Editorial
An Entry for the Irish Sporting Pages: Remember Susan O'Hara
Megan A. Conway, PhD
RDS Editor-In-Chief
      I sat down to coffee with one of my students the other day, started dishing out advice, 
and realized that I was her mentor. And the scary thing was, she was actually listening to me. 
Throughout my life I have had the good fortune to know other people with disabilities who I 
have looked up to and who have given me the strength to persevere when things seemed 
impossible. Realizing that I have come of an age where I can and should do the same for 
others is sobering.
Photo below is of Megan and Susan at the DSP Graduation in 1992.
One of my dearest mentors and friends, Susan O'Hara, just passed away this summer at the 
age of 80. I first got to know Susan thirty years ago when she was Director of the Disabled 
Students Program (DSP) at UC Berkeley and I was an enthusiastic and overwhelmed 
Freshman. Susan, a polio survivor, gathered a group of disabled students together on a regular 
basis to discuss disability issues on campus and offer advice on how to address them. The 
advice I remember most is, "What are YOU going to do about it?" She encouraged us to 
identify specific problems that we all shared, think through solutions, and act collectively on 
those solutions. It seems cheezey to say this, but Susan "empowered" us. She made us feel 
like whatever life dished up, we could do something about it.
      Susan saw the funny side of things that were also unfair or exasperating. A favorite 
story of mine was her description of first coming to UC Berkeley and visiting the "dorm" for 
students with severe physical disabilities. Instead of being housed with other students, their 
dorm was literally a wing of the campus hospital. "When I rolled in there I expected to see a 
bunch of sick people," said Susan, "But the first thing that happened was somebody handed 
me a paper cup of Scotch and I thought to myself, 'hmmmm, these folks are definitely not 
sick!'" She was soon to direct Berkeley's first residential program for disabled students, 
which moved out of the hospital and into an actual dorm, but she recognized the wonderful 
irony of the sense of autonomy that students felt from having their own space even if it was in 
a hospital wing.
      I last saw Susan a year before she died after she had been confined to her bed for 
several years due to illness. I will be honest, when I walked into her room I did expect to see a 
sick person. "Guess what?" she bubbled conspiratorially as I poured tea and selected from an 
assortment of cookies on the table next to her bed, "Word has it that Queen Elizabeth is going 
to step down and pass over Charles to make William King!" "Umm, are you sure about that?" 
I scrolled through the internet looking for a reputable source for this information. "Yes, my 
attendant told me so this morning. Can you imagine? What does Charles think about THAT?" 
"I'm sorry Susan but I can't find anything that confirms that story is true." "Oh no," she 
crowed, "It looks like I have been the victim of fake news!"
      Susan, of unabashed nosy Irish stock,  used to call the obituaries the "Irish Sporting 
Pages." She loved to read the stories of other people's lives, or rather what their friends and 
loved ones thought were the stories of their lives.  She was always modest about her own 
accomplishments; her leadership in establishing one of the first supported living university 
residential programs for students with severe disabilities, her years working to advocate for 
(and exemplifying) independent living, her travels abroad, her volunteer work for a Bay Area 
philanthropic Foundation, her passion for and contribution to the UC Berkeley Disability 
Rights and Independent Living Movement Oral History Project, and of course the many 
dozens of young (and old) people like me who she mentored and encouraged.
      I bid you "adieu" Susan. If any one of us can contribute half as much material to the 
Irish Sporting Pages as you did, we will have accomplished much. But we still have time to 
work on our entry.
      
 
An Entry for the Irish Sporting Pages: Remember Susan O'Hara by Irish Sporting Pages: 
Remember Susan O'Hara Megan A. Conway is licensed under a Creative Commons 
Attribution 4.0 International License. Based on a work at http://rdsjournal.org. Permissions 
beyond the scope of this license may be available at https://www.rds.hawaii.edu.
        
Research Article
Disability Policy and Wheelchair Users' Accessibility in Jordan
Mohammad Ali Mulazadeh, PhD & Talal Soliman Alharbi, PhD
University of Kwazulu-Natal 
Coventry University & Al-Areen Engineering Consultants
Abstract: The main purpose of this article was to evaluate wheelchair users' access to public 
buildings in Jordan. The key assumption was that accessibility to public buildings in Jordan 
did not meet the needs of wheelchair users. Field observation method was applied using the 
accessibility checklist of Americans with Disabilities Act Accessibility Guidelines (ADAAG) 
as a tool to collect data from a randomly selected sample of 30 buildings in Amman city. 
Quantitative analysis was used and results show that the average level of accessibility 
compliance of the surveyed buildings was too low (23%) to meet the needs of wheelchair 
users. The study concluded that little progress has actually been achieved in terms of 
environmental accessibility, which implies that Jordan's disability policy was not successful 
in creating accessible environments in which wheelchair users' equal rights of access to 
education, employment and basic services is guaranteed. The conclusion also sends a clear 
message to professionals and decision makers that despite the existence of disability 
legislation, wheelchair users are still facing physical and social barriers that prohibit their 
access to public buildings. In other words, law without recognition of the rights of people with 
disabilities tends to become ineffective.
Keywords: Disability; Accessibility; Wheelchair User; Social Inclusion
      Literature suggests that social exclusion is more apparent for those with mobility 
limitations as long as their equal rights of opportunities are not recognized by the wider 
society (Barnes, Mercer, & Shakespeare, 1999; Giddens, 1993). Creating an accessible built 
environment as such, cannot be achieved without societal recognition of the equal rights of 
people with disabilities to that of their peers. If this were achieved it would lead to their 
inclusion into mainstream society. This was also asserted by Napolitano (1996) who believed 
that securing access for people with disabilities to the built environment and their presence in 
the social sphere will enviably contribute to the acceptance and appreciation of their problems 
by the wider community. He added that:
"Being able to use the environment is about more than being able to 'get about'. At 
a deeper level it is about a sense of belonging. Until the environment supports 
mobility impaired people's participation with dignity and pride intact, this sense 
will continue to evade them" (Napolitano, 1996, p. 34).
This quotation sustains the theory behind the social model of disability which advocates that 
attitudes towards inclusion should go hand in hand with the design and construction of the 
built environment in order to give equal rights of accessibility to people with disabilities. 
Hisser (1995) who himself is a wheelchair user, emphasizes that the inaccessibility of public 
facilities "may cause disabled people to be alienated, ill, poor and marginalized" (p. 56). He 
recommended that wheelchair users' accessibility of basic needs, services, basic education, 
and employment would guarantee their integration into mainstream society.
Disability Policy in Jordan
      Following the proclamation of the 1981 International Year of Disabled Persons 
(IYDP) by the United Nations, large numbers of countries in the developed and developing 
world including Jordan, have initiated Acts to reduce the negative attitude of society towards 
people with disabilities and to assure their rights of equal opportunity with peers (Eleweke, 
1999). 
      According to Article 9 Convention on the Rights of Persons with Disabilities, 
accessibility (CRPD) means:
"To enable persons with disabilities to live independently and participate fully in all 
aspects of life, States Parties shall take appropriate measures to ensure to persons with 
disabilities access, on an equal basis with others" (CRPD, 2006, p. 8).
Although the Conversion came into force on 3 May 2008, and has 160 signatories and 175 
parties which includes 172 states the vast majority of people with disabilities who live in 
developing countries including Jordan are still waiting to practice their full rights of 
accessibility.
      Within the context of this societal negative attitudes towards people with disabilities in 
Jordan, the poor accessibility of built environments was not far from expectation. As such, it 
is too difficult if not impossible, for disability law to change the attitudes of society and 
actually guarantee the equal rights of participation or equalization of opportunities for people 
with disabilities in developing countries.
      The change of societal concepts according to Vasey (1989) can have a direct impact 
on the creation of built environments while negative perception can adversely affect 
environments and render them inaccessible. He asserts that "the attitudes of a given society 
must change if a disabled person is to realize his/her dream of being ... integrated into 
mainstream culture" (Vasey, 1989, p. 6). The change must begin within the home as early 
education of a child with a disability is an influential factor in shaping the future reactions of 
the child.
       Jordan, which is officially called 'The Hashemite Kingdom of Jordan' is a Muslim 
Arab country in the Middle East with a population of more than 9 million in 2016 that has a 
high rate of disability. It was estimated that the population of people with disabilities in 
Jordan would reach 600,000 people by 2016, half of whom are living in the capital city of 
Amman (Nabawy, 2012). Nearly one third (27%) of people with disabilities are physically 
disabled and have no access to basic services, and are destined to be either isolated or more 
reliant on others (HCD, 2011). In response to this up surging number of people with 
disabilities, outcomes of Jordan's government has initiated a policy in 1993 which was later 
advanced into Law No. 31 in 2007. This policy calls for the recognition of equal rights of 
people with disabilities and made public and private sectors liable by the law to create 
accessible built environments. Assessing the outcomes of Jordan's disability policy and its 
outcomes in terms of creating accessible public buildings in which wheelchair users can use 
public spaces and live independently is important and is the focus of this study.
Purpose of the Study
      This study was undertaken in order to define the degree of accessibility compliance of 
public buildings in Jordan, and the implication for wheelchair users' access to education, 
employment and basic services. The findings of this study can be used as a reliable index 
against which the effectiveness of Jordan's disability policy can be evaluated.
Method
      Field observation method based on the checklist of the Americans with Disabilities 
Act Accessibility Guidelines (ADAAG) were applied to collect data from a randomly selected 
sample of 30 buildings in the city of Amman. The collected data was analyzed quantitatively 
from auditing the accessibility of public buildings. The access audit technique proved to be an 
essential technique by which accessibility of public buildings are measured and recorded 
(Ormerod, 2005). Buildings from all categories, public or private, that are involved in 
providing public services were categorized as public buildings. Government's published and 
unpublished materials were also used to link the findings of this study with the actual 
condition of wheelchair users' access to education, employment and basic services. 
Procedures
      The checklist of ADAAG is amended to fit this study and be used as the standard tool 
for measuring the accessibility compliance of buildings in Jordan. The checklist was modified 
in order to cover six accessibility areas including: parking, ramps, entrances, accessible 
routes, toilets and lifts. For two reasons the ADAAG was used for auditing the sample 
buildings and facilities. First, its suitability, reliability and applicably were approved by a 
number of published studies (McClain, Beringer, Kuhnert, Priest, Wilkes, Wilkinson, Wyrick, 
1993; McLain, 2000; Useh, Moyo, & Munyonga, 2001; Rivono-Fisher, 2004). Secondly, 
Jordan's disability law and its associated National Building Code (NBC) were short of 
providing any quantified accessibility standards to guide or assist constructors for 
implementation, and research for measuring the degree of accessibility compliance of 
buildings.
      The buildings' managers were approached before beginning the survey and informed 
about the purpose of the research, confidentiality of the data to be collected, and the caution 
that would be taken not to hinder or impede the activity of the building in query during 
surveying. After getting the buildings managers consent, data was collected through direct 
observations and measurements.
      The authors were assisted by four volunteer students who were briefed and provided 
with measurement tools to carry out the survey. The compliance of an 'area of accessibility' 
in or about a building is measured in terms of its accessibility and closeness to the ADAAG 
standards. If the properties of an area of accessibility for instance, a ramp matches Section 
4.8.2 of the ADAAG standards then its compliance degree would be satisfactory. The same 
procedures were used to calculate other 'areas of accessibility' based on the ADAAG 
guideline.
      Calculating the degree of accessibility compliance of each building was however, 
obtained by dividing the number of available facilities complying with ADAAG standards 
over the total number of required accessible facilities in each building. For example, if 
ADAAG standards require five accessible parking places in a particular building but there was 
only one available, then the compliance of the building in terms of accessible parking is 20%. 
Accordingly, accessibility compliance of a building lacking any particular service area would 
be zero or non-compliant. 
Findings of the Study
      To begin with parking spaces, nearly 70% of the 30 buildings lacked accessible 
parking or zero accessibility and only 6 buildings had parking spaces with more than 50% 
accessibility compliance that matched the ADAAG standards. The same condition was found 
regarding accessible routes or footpaths connecting the parking to the entrances. The average 
compliance of the routes was almost absent (0.8%). For example, the width of the route 
connecting the parking and the newly constructed headquarter of the Court of Justice in 
Amman was too narrow to accommodate two pedestrians or allow wheelchair users to 
negotiate the path safely - let alone two wheelchair users meeting each other (Figure 1). The 
findings imply that construction regulations of buildings suggested by the Jordan's disability 
law and its relevant NBC were either neglected or ill-defined with regard to accessibility for 
people with disabilities. 
 Figure 1. Photo of narrow path entering the Court of Justice. 
      Nearly 80% of the buildings (23 out of the 30) had either substandard or no ramp 
installed for wheelchair access. For example, in some cases, an unsafe iron sheet with a steep 
slope was installed as a temporary ramp which was far from being within the required 
standard (Figure 2). Only 23% of the buildings have provided ramps which were close to the 
required standards reaching 50-100% compliance.

Figure 2. Photo of Iron sheet used as a ramp in a hospital in Amman.
      
      
      
      
      
      
      
      
      

      The majority (80%) of doors entrances in all buildings had clear opening width 
(815mm) and a high level of accessibility compliance between 50%-70% but none of the 
buildings were 100% compliant with the applied standards. On the contrary, except for one 
accessible toilet in the HCD building, the rest of the buildings' toilets were either substandard 
or no toilet was designed to be accessible for wheelchair users. Most of the toilets were found 
without a grab bar mounted on the wall and no washbasin at a suitable height. Doors opened 
outward and had no standard space for turning a wheelchair. Lifts in half of the buildings were 
either absent or substandard and in the remaining buildings the lifts satisfied the required 
standards for compliance. 
Findings of Education Buildings
      Secondary data revealed that the illiteracy level of people with disabilities is 
significantly higher (30.5%) than that of the national illiteracy rate of 9.3% (DOS, 2004; 
HCD, 2011). This big difference can be attributed to the inaccessible educational buildings 
that prohibit students with disabilities from entering them. The lack of/or unsafe ramps low 
compliance of lifts (11.6%), toilets (6%) parking (21.6%), and routes (25%) have all acted as 
barriers to enter educational buildings, which makes it more difficult for students with 
physical disabilities to enter and navigate the buildings. 	
Findings of the Workplace
      The facilities for people with disabilities in the workplace were found to be worse than 
that of educational buildings. For example, Jordan's NBC obligates constructors to install 
ramps in all buildings and lifts for buildings of more than four floors. However, accessibility 
compliance of ramps and lifts in most workplace buildings were found to be very low.
      According to the ADAAG standards, accessible areas such as parking should be close 
and connected by accessible paths to the main building. However, the average accessibility of 
parking areas in workplaces including hospitals were rather low (21.5%) and located far from 
the main buildings. The distance of parking areas however, in the majority of observed 
buildings was much greater than the defined standard of 50m and lacking accessible paths. A 
number of accessible parking spaces had no symbol or sign to indicate that the parking is 
designated for people with disabilities though existence of such a sign cannot prevent the non-
disabled from occupying the designated spaces.
      A report by Malkawi (2015) in Jordan, confirms that the employment rates of people 
with disabilities in both public and private sectors showed little improvement and remained 
between 0.5% and 1%. Azzeh (2015) has also reported a high rate (48%) of unemployment 
among physically impaired people in Jordan which can be attributed to the low accessibility 
compliance of both educational (22%) and workplace (25.5%) buildings. Inaccessibility of 
workplaces has caused wheelchair users to remain jobless for longer periods of time than the 
rest of the working age groups.
Findings of Cultural and Recreational Buildings
      A number of the recreational centers, such as parks, public libraries, mosques, and 
cinema halls had no ramp at the entry gate, which renders them inaccessible. The Grand 
Mosque and its toilets and ablution area were inaccessible ( Figure 3). An ablution area is 
considered as the prerequisite step before entering a mosque for praying. Nevertheless, the 
condition of internal doors and corridors and their components such as width and handrails 
were in a satisfactory condition.
Image 3. Photo of grand mosque with no ramp.
 
      The stadium was the only recreational area which seems to have an accessible ramp 
inside the building. However, there was no ramp to connect the main road to the inside ramp 
beyond the gate that seems to be permanently locked for unknown reasons (Figure 4).

Figure 4: Photo of no ramp to connect the main road to the gate of the stadium.







      The findings demonstrate that in spite of the implementation of disability laws in 
Jordan, the inaccessibility of public buildings and relevant services remain unchanged leading 
to under education, unemployment, and social exclusion of a majority of people with 
disabilities.
Discussion
      Middle East Arab countries, regardless of their multifaceted economic position, are 
prohibiting wheelchair users from accessing public buildings despite the existence of 
disability legislations (Hall & Imrie, 1999). With no exception, the overall results of the 
accessibility auditing of public buildings in Jordan show that the average accessibility 
compliance of all buildings was only 23%. This low average implies that not much has 
actually been accomplished in the field of wheelchair users' accessibility to the public 
buildings in Jordan. 
      Clause 1, Section E, Article 4, of the disability Law of Jordan for example, 
emphatically stresses on "inclusive environment that provide the freedom of movement and 
equal rights of accessibility for all" (Jordan Disability Law, 2007, p. 5). Article No. 32 of the 
National Building Code has also obliged public and private constructors to apply the building 
regulations concerning people with disabilities in 'all new buildings and old buildings 
wherever possible (World Bank, 2005, p. 16). 
      Nevertheless, the HCD which was given power by the law in order to enforce the 
standards and tackle the inaccessibility problems by follow-up observation and evaluation has 
failed in enforcing the standards even in its own headquarter building. The gradient of a ramp 
which was installed in the entrance of the HCD main building was too steep for a wheelchair 
user to negotiate without a companion or people help (Figure: 5).
      
Figure 5. Photo of a substandard ramp in the entrance of HCD main office.








      
      The results are not surprising when it comes to developing countries. The findings of a 
comparative study carried out by Welage & Liu (2011) for example, show a meaningful 
difference in the level of accessibility compliance of public buildings among developed and 
developing countries. The study by Welage & Liu (2011) indicated that the average 
accessibility compliance of buildings in developing countries including Zimbabwe, UAE, 
Turkey, Nigeria, and Jordan (added by the authors) is far less than the average accessibility 
compliance of buildings in the USA (Figure 6). 
Figure 6. Accessibility compliance percent of buildings by country - Jordan (30%), 
Nigeria (29%), Turkey (55%), UAE (52%), USA (78%), Zimbabwe (54%)
Source: Welage & Liu (2011) and field survey in Jordan.






      Without exception, the level of accessibility compliance of most buildings and their 
relevant services were too low to provide wheelchair users' equal rights of access to 
education, employment, and basic services.
      The consequence does not seem to be limited to Jordan's legislation as Gleeson (2001) 
stated that "achieving the goals of human rights is still hampered by ineffective legislation 
inaccessible design regardless of political concern" (Gleeson, 2001, p. 259). In line with 
Gleeson (2001), and Kitchin & Law (2001, p. 288) also consider that the absence of 
accessible toilets "not just undermine social justice and disabled people's rights of citizenship 
rather disregards their health and dignity problems as well". Anderson and Kitchin (2000, p. 
167) have also found it "vital for designers and architects, during the building processes, to 
take into account the difficulties experienced by disabled individuals throughout the course of 
their daily activities. This is true because environmental design is "the legal driver for curbing 
discriminatory situations by removing barriers" (Casserley & Ormerod, 2003, p. 153). 
      Accessibility of public buildings was found to be extremely limited in a manner that 
no one of the 30 surveyed buildings had a higher level of accessibility compliance than 58%. 
This means that Jordan's disability legislation has failed in achieving its set target of creating 
an accessible built environment. Consequently, wheelchair users have no option but suffering 
more isolation and social exclusion.
      In summary, a change in the living condition of people with disabilities, requires 
initial changes to the culture as a prerequisite for the change of societal attitudes. Change of 
culture and attitudes of a society is a long-term process that may take generations before 
people with disabilities are accepted and truly integrated into mainstream society. In other 
words, attitudinal changes cannot happen overnight or be dictated by legislation alone. Rather, 
re-education and greater understanding of the diversity of people's lives is the key to removing 
the discrimination and oppression of people with disabilities. In order to understand the 
people they are designing for, and appreciate the frustration of people with disabilities, 
designers, decision makers, and architects should have sufficient awareness of the societal 
attitudes toward disability. The designer should involve end-users in determining the design 
and contributing some of the expertise needed (Imrie & Hall, 2001).
Conclusion
      In conclusion, the results of this study show that not much has actually been done in 
the field of wheelchair users' accessibility of public buildings in Jordan. A key finding of the 
research indicates that overall low (23.8%) accessibility compliance of public buildings has 
created considerable difficulties for wheelchair users in reaching their daily needs. Based on 
this finding, it can be concluded that the Jordanian disability policy was not successful in 
providing wheelchair users with equal opportunities in accessing education, employment and 
basic services.
      The results confirm that the environmental standard recommended by the ADAAG 
was not enforced by Jordan's disability law. This is because the prevailing social negative 
attitude towards disability has curtailed the creation of an accessible environment. The 
problem of an inaccessible built environments goes far beyond physical barriers leaving 
wheelchair users with no option but to be socially isolated.
      It is right to conclude that policy formulation cannot achieve its goals unless the wider 
society becomes aware of and recognizes the equal rights of opportunities for people with 
disabilities with their peers. In other words, law or regulation cannot be a success or make a 
difference on the ground unless they are accompanied by changes in societal attitude towards 
people with disabilities.
      The findings of this research send a clear message to the planners, designers and 
decision makers that they were unsuccessful in bringing about what they have promised. Their 
efforts instead should focus on the inclusivity method in order to pave the way for wheelchair 
users' social integration and their fullest participation in socio-economic activities. 
      This conclusion may also alert professionals and officials to the fact that effective 
implementation of a law in a society where negative attitudes towards people with disabilities 
is dominant is deemed to be difficult if not impossible. Accordingly, imposing a set of rules 
and standards which have no credentials in the belief and culture of a society, undoubtedly 
cannot achieve the expected results. 	
Message for Policy Makers and People with Disabilities
      Creating a barrier -free built environment is a prerequisite step towards the ultimate 
goal of social inclusion which can preserve human dignity and contribute to the socio- 
economic advancement of society. In order to avoid discrimination against people with 
disabilities, designers should consider the participation of end users (wheelchair users) during 
the design process in order to create a 'wheelchair friendly' environment. The findings of this 
research might also be helpful in broadening the vision of legislators and building designers in 
Jordan and other similar countries in the region and stimulating them to strive for equal 
opportunities and adequate service provision. 
Mohammad Ali Mulazadeh, PhD is an Associate Professor in Urban Planning focusing on 
Urban land-use, housing development and disability and Environmental Accessibility. As a 
multidisciplinary researcher and a lecturer he worked with Chamran University in Iran, 
London South Bank University in UK and University of Kwazulu-Natal in South Africa 
where he was retired. email: mmulazadeh@yahoo.co.uk, Tel: 00447716429252
Talal Soliman Alharbi, PhD is the CEO of Al-Areen Engineering Consultants and research 
fellow in Coventry University focusing on Urban Planning, disability, accessibility and 
adaptability of Built Environment. As an experienced researcher and environmental 
Developer he has participated in many KSA's national projects to create a suitable 
environment for all.
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Disability Policy and Wheelchair Users' Accessibility in Jordan by Mohammad Ali 
Mulazadeh & Talal Soliman Alharbi is licensed under a Creative Commons Attribution 4.0 
International License. Based on a work at http://rdsjournal.org. Permissions beyond the scope 
of this license may be available at https://www.rds.hawaii.edu.
        
Research Article
Can We Say They are also Beautiful? Disability is not a Curse
Mahtab Ahmad, PhD
Bahauddin Zakariya University, Population Welfare Department 
Abstract: Throughout the world negative connotations and scapegoating of individuals with 
disabilities is far too common. The purpose of this article is to examine the history that shows 
how persons with disabilities are viewed, and ends with suggestions on how to improve this 
perception in countries where these productive citizens may not be fully valued. A critical 
review was conducted by dividing the definition of disability into five different perspectives 
(historical, religious and theological, legal, socio-cultural, and developmental), and concludes 
that when viewed through an international lens, traditional dogmas continue to exist. The 
belief that disabilities are 'divine punishments', and any subsequent miseries related to the 
disability are attributed to misdeeds from a past life. Beliefs that foster this negative 
perception support mistreatment and allow for the continuation of unfounded negative 
stereotypes. Understanding and exploring these beliefs is considered the first step in changing 
these negative perceptions. 
Keywords: Body; Beauty; Disabilities; Religion; Stigma; Negative Connotations
Introduction
      Most people would agree that we live in a world where beauty is often measured by a 
person's physical characteristics. The emphasis on physical attributes are often highlighted in 
the media where portrayals include the picture of 'perfect body' and belief, starting in 
childhood, that those who do not meet this expectation can be ignored or degraded. According 
to the phenomenology of perception, an intimate connection between body, experience, and 
image is pre-requisite faith for looking 'perfect' as loss of a body part can be devastating for 
self-identity (Landes, 2012; Merleau-Ponty, 1945). Some individuals have defined 'perfect' as 
a state of being where all of the facets of the individual are portrayed without flaws, blemishes 
or defects (Fontaine, 2003). This intense focus on the physical appearance of a person points 
out flaws and develops a 'belief' in the gap between 'ability and disability.' If first 
impressions guide any future interactions, individuals with disabilities could be viewed 
negatively and treated harshly stopping others from wanting to seek further contact thereby 
blocking the ability to see the inner qualities and intellectual giftedness of the person.
      Seeing these limited portrayals of beauty can also lead people with or without physical 
disabilities to believe that they too need to have the perfect body and will strive to achieve it. 
Working hard to meet this standard of having the perfect body can leave people feeling 
inadequate and frustrated. It can also help to determine the type of person that is sought for a 
mate or life partner as well as those active socially and in community. When a selected partner 
does not meet this expectation, they may be rejected or treated with disdain (Fontaine, 2003; 
Mekoosha, 2006). As society developed from an agrarian one to more industrialized, the 
social and community exposure has increased and with these changes so has the potential to 
stigmatize someone for their physical attributes. The connection with such stereotyping was 
assigned to women in particular, recognizing them with the faith and desirability based on 
their beauty (Goffman, 1963).
      Due to the intense pressure of industrialization and mass performance those 
individuals that were not able to keep-up were perceived as different and were segregated. 
This type of segregation was described as aesthetic anxiety and highlighted the tendency of 
'public morality' to reject deviations from normal physical appearances (Hahn as cited in 
Oliver, 1989, p. 8). This meant that presenting as aesthetically pleasing was somehow 
connected to the assumption that the individual was also efficient and effective in his/or her 
capabilities (Goffman, 1979). Supporting this belief countries adopted Galton-led approaches 
that mainly focused on creation and use of intelligence tests designed to screen-out those who 
were more intelligent from those who were not (Lewis, 1989). 
      Furthermore, the negative perception of individuals with disabilities was further 
fostered through medical science with the assumption that any form of diversity in the human 
body was undesirable. This assumption, sanctioned by the medical field, offered a means to 
get rid of such 'anarchic bodies' (Peters, 1994). This left such people to be viewed negatively 
and constructed socially as carrying an unusual genetic character; allowing these individuals 
to become primary targets for discrimination. Historically, women in particular were targeted 
and scrutinized with the belief that these women should refrain from the reproduction of 
imperfect bodies (Fontaine, 2003; Frohmader, Storr, Cooper & Fontaine, 2000). 
Unfortunately, this type of negative thinking that 'disability breeds disability' resulted in 
various discriminatory practices. And it highlighted the popularity of genetic testing, abortion, 
and sterilization to avoid the possible reproduction of 'faulty' bodies (Kaplan, 1994; Pastina, 
1981; Peters, 1994). This assumption was later supported further by the discovery of DNA in 
the 1950s which opened new ways to access for understanding about the workings of a body, 
and to justify the creation of a physically-perfect human. However, given advances in medical 
science, either unintentionally or not, about how perfection can be identified has supported 
myths of disability being viewed negatively in many societies (Peters, 1996).
      Images of the ideal body supported by portrayals and expectations of modern society 
often exclude individuals with what is perceived to be a 'non-perfect' body. This exclusion 
involves social situations and ties that do not match with the ideal body stereotype. These 
occurrences of exclusion can affect the person's physiological, sociological and emotional 
aspects, which can lead to what some have termed as a syndrome of mental rejection (Ganai, 
1994; Gardner, 2002). This over-valuation of what is considered the physical ideal has left 
those with what are considered 'non-normative' bodies treated with the stigma of being 
viewed as unproductive, imperfect and useless. Since they can become the target of social 
rejection these persons with 'non-normative' bodies may be ignored and avoided by others 
(Ferreira & Guimarães, 2003; Furnham, Badmin & Sneade, 2002). If not supported by close 
relationships and family the social rejection could in turn end in their 'social death' and it is 
witnessed more or less everywhere in the world (Humphrey, 1999).
      Beyond the question of impairment and functional limitations, critical disability theory 
views disability as an issue of social values and institutional priorities that who and what gets 
valued, and who and what gets marginalized (Pothier & Devlin, 2006). The theory asks to 
interrogate a system of justice that is based on a politics of faith "just us" (the so called abled-
bodied). The World Health Organization (WHO, 2011) stressed this concern by reporting that 
15% of the world's population was being discriminated against purely based on the fact that 
they had 'non-normative' bodies. This physically present body-wise bias has led to the 
scapegoating of individuals with non-normative bodies. The purpose of this article is to 
examine the literature to explain how perceptions and beliefs about the body image have 
influenced what is considered physically and emotionally 'non-perfect', and how it relates to 
helping all individuals to maintain accepted and productive roles in society.
Methodology
      This topic was researched based on secondary data retrieved from a variety of sources: 
websites, books, doctorate dissertations, and articles on history and attitudes towards 
disability. Body; Beauty; Disabilities; History; Religion; Negative Connotations; Social 
Stigma; Disability Rights; Discrimination; and Development were used as "keywords" for 
searching literature on various aspects related to this study.
      In order to better understand the distinction between normal and abnormal; pure and 
impure; and healthy and unhealthy; Stiker (1997/2005) argues to look at religious and 
supernatural and moral and medical worldviews. The disability studies theory is a synthesis of 
social constructionism and critical theory that places disability in resisting notions of stigma 
and gives a way to examine barriers by applying social, cultural, religious, historical, and 
philosophical perspectives to study disability in a society (Cory, White & Stuckey, 2010). So, 
the literature retrieved from various sources was examined to gain insight on the subject 
matter and information from less-authentic sources was discarded. The literature then by 
sorting out into five different perspectives: historical, religious, legal, socio-cultural, and 
developmental was critically reviewed and analyzed to conclude the situation.
Review and Discussion
Historical Perspective
      It is believed that a critical part of the foundation of western civilization can be better 
understood by examining the beliefs of the ancient Greeks. Their philosophical, architectural 
feats and artistic endeavors have had a profound effect on the culture of the entire world 
(Devonport, 1995, as cited in Barnes, 1997; Risebero, 1979). It is often overlooked, however, 
that the Greek economy had a history of violence that flourished on slavery and was based on 
an overtly patriarchal and hierarchical foundation. Early Greek society has been universally 
renowned for asserting personal rights and ensuring that people were treated with dignity. 
However, these courtesies were only extended to Greek males, which generally ignored the 
rights of women and non-Greeks and thus enabled this civilized society to justify oppression 
and exploitation. Since the Greeks lived in turbulent times and were often prone to war, 
military service for Greek men was obligatory. Greek society was composed of semi-
autonomous city states and these areas often remained engaged in war against each other as 
well as with other neighboring areas. To some extent this was assumed necessary in order to 
maintain a constant supply of able-bodied slaves (Cahn, 1990; Russell, 1981). Hence, 
infanticide of sickly, weak or disabled infants was widespread and to avoid the loss of 
physical prowess and productivity in some states it was mandatory (Tooley, 1983). A 
reflection of the expectation of male supremacy and concentration on physical attributes is 
outlined in detail in a section entitled 'How to recognise a child that is worth raising' from a 
gynecology manuscript written by a Greek physician, Soranos, in the second century AD. 
      Unfortunately, recognizing individuals with disabilities as a personal flaw is not 
limited to early Greek societies. Perhaps, ancient Greek society profoundly affected others to 
continue to shape western society in the same manner (Stiker, 1997/2005). In Roman societies 
for example individuals with physical disabilities were portrayed as jesters serving at the 
pleasure of nobility in the Roman Empire (medieval courts). This was also followed by the 
acts of their infanticide during the Renaissance. Infants and those with physical abnormalities 
were drowned and burned during the Spanish Inquisition, or kept in cellars in correctional 
institutions. Another notable area in history was the Nazi German era with quotes such as 
'exterminated disabled and impaired persons first' providing another example of how these 
perceptions have been supported over time (Greenwood, 1996). The philosophy in Nazi 
Germany that supported the extermination of the disabled was the perception that impaired 
bodies were unproductive and caused an extra burden on society (Imrie, 2001). Thus, for Nazi 
Germany the punishment and ostracism of disabled individuals was considered as a solution 
suitable for the society. During the Holocaust in Europe, nearly 100,000 children and adults 
with disabilities were killed as they were considered morally bad or genetically flawed. Many 
other examples of unfair treatments can be found throughout the history (PACER Center, 
2004; Wray, 2002).
      Though, it was beyond the scope of this article to explore all historical trends many 
countries and societies supported this belief of inferiority. For example, in America, this was 
evident in the 1800s where in colonial America an 'Institution for Idiots' was founded in 
Massachusetts in 1848 along with the dehumanization in the orphanages of the nineteenth-
century.
      To summarize, it can be argued that there are breaks in how we have historically 
viewed disability but the older worldviews continue to shape our present view, so it is 
important to use history to illuminate the present (Stiker, 1997/2005).
Religious and Theological Perspective
      Religion and religious beliefs provide the foundation for many of our societal beliefs. 
Using religious dogma and power to explain the unknown means the teachings can have the 
power to control behavior. Religious lessons guide what people believe to be true, and how 
they should act in accordance with these beliefs (Goldberg, 2006). Thus, the public and 
private behaviors are often governed by these codes of conduct described in religious law. For 
example, in biblical prophecies such as 'The Jesus healed the lame and blind' (New 
Testament Stories, 2005, pp.100-101), if these religious teachings are examined it can provide 
an understanding about disability, and how images of deformed bodies have been displayed. 
In fact, religion has been entangled with secular power and polity to exploit its relationship 
with the establishment to effect well.
      The religion in discussion here is limited to the three versions of Abrahamic traditions: 
Judaism, Christianity, and Islam, and Hinduism based on Hindu theology. Judaism, 
Christianity, and Islam fall under the umbrella of the Abrahamic traditions as all three 
recognize the historical figure Abraham and his descendants as central figures in their faith 
and beliefs. There is significant overlap in the sacred texts of each faith and in each of them 
evidence can be found related to the treatment of people with what are often considered non-
normative bodies.
      The Yahweh stories are considered central in Hebrew tradition. In the Yahweh stories, 
disabilities are generally documented as negative degradations of the 'perfect' body. These 
disabilities are perceived as divine punishments. People with physical impairments were 
considered impure and a potential threat for bringing pollution to their surroundings and other 
people (Hentrich, 2007). Jewish law describing the need for perfection in both the sacrificial 
object and the preparer of the sacrifice is well discussed in this regard (Miles, 2002a, 2002b). 
      The David stories also communicate negative images and roles for people with 
disabilities in society. Meribaal, one of the sons of Saul, was spared from being killed with the 
notion that he was no threat to David because he had a physical disability (lame/or crippled) 
that would legally exclude him from assuming the throne (Schipper, 2006). Meribaal's 
inability to rule is unclear. Yet it seems that purity law associated with the religious practice 
was responsible for his disqualification, and his disability lead to beliefs related to the status 
of reduced manhood.
      In addition, after assuming power in Jerusalem, David banned persons with disabilities 
from the temple (Hentrich, 2007). Whether it was due to revenge from those who opposed 
him or because of the issues of 'purity and pollution', the writings of this nature continued to 
provide a foundation for marginalizing persons with disabilities in multiple aspects of social 
life (Bishop, 1995).
      Christianity is believed to get its roots from the Hebrew bible as the Old Testament 
became a separate religion with the birth of Jesus. The New Testament contains stories of 
what happened during and after the birth of Jesus and the themes outlined are rooted in social 
expectations (Miles, 2001). Disability carried a markedly different meaning and function in 
the New Testament. Rather than simply considering disability as a punishment, people with 
impairments became a medium for God to communicate messages of mercy and power. As 
explained in the book of John people are born with impairments in order to provide 
opportunities for God to demonstrate his power. They are not manifestations of the sins of 
their parents (Miles, 2001, 2002b). Moreover, there is long history of showing both negative 
and positive attitudes towards disability with the interpretation and reinterpretation of the New 
Testament on a regular basis for centuries.
      For instance, it has been widely misapprehended and caricatured that in sixteenth 
century a renowned reformer Martin Luther made remarks about babies with impairments 
based on his belief that they were not actually human babies but rather incarnations of devil 
(Miles, 2001). Indeed many disabled persons were receiving humble attention and a kind 
treatment from the services of Church but for curing and healing purposes, in which the goal 
was 'normalization' of the bodies of persons with disabilities (Eiesland, 2009). No doubt the 
most famous and sacred saying that Jesus heals the wounds by forgiving sins served as basis 
of social reforms for improving the lives of individuals with non-normative bodies. Yet, the 
overwhelming interpretations of the Jesus narratives contributed to set disabled people apart 
from society by creating an implicit message that those who are not healed or cannot be 
healed are not like us.
      The word Islam means submission to the will of God. Muslims believe that one is born 
in the body that the God bestows on one to have, otherwise they all are equal. Only God is 
perfect. Physique matters less in Islamic lessons. Therefore, to dishonor or exclude people 
based on their non-normative bodies from life is an act against the will of God (Miles, 2002b). 
Impairments are considered normal aspects of the human experience. Although health is 
benevolence from God, disease, disability, pain and suffering are not divine punishments or 
wrath. These happen only to test patience and commitment of believers with the faith as well 
as with God. Those who observe patience here in this life will receive a great reward in the 
Hereafter (Islam, 2009). The Quran not only calls for inclusion of such people in social life 
but also gives them concessions in various obligations and commands for their social 
protection in several ways. The Holy prophet Muhammad (peace be upon him) behaved 
decently with disabled people by showing his humbleness to their particular circumstances, 
and commanded not to consider such things which should stand in their way of leading to live 
a normal life (Pervez, 2014).
      Besides such provisions in religion, the symbolic use of various types of infirmities in 
the interpretations of religious lessons provides a justification for people (to some extent) to 
turn their back on the disabled individuals. And in Muslim societies they are disregarded in 
various walks of life for one or the other reasons and often treated pathetically. Several 
demeaning titles are used to undermine them. For instance, in a Muslim society like in 
Pakistan although a compatible faith- and intellect-oriented reflection is well documented 
(Khan, Watson & Chen, 2017) instead of calling the actual names, the disabled are often 
called by demeaning titles at public places. A glimpse of those titles used as a routine matter 
with regard to a disability is as follows:
?	Langra - (a person with mobility impairment)
?	Kana - (a person with visual impairment of one eye)
?	Andha - (a person with visual impairment of both eyes)
?	Tounda - (a person with hand or arm impairment)
?	Gounga - [a person unable to speak (Dumb)]
?	Behra/Dora - [a person with hearing impairment (Deaf)]
?	Pagal/Kamla - (a person with mental retardation/ intellectual disability)
      As a result, disabled people often fear coming out at public places and mingle with 
social as well as religious gatherings. In addition, the concept of Jinns behind intellectual 
disabilities largely prevails in rural belts (Alam, 2014). In some other Muslim majority areas 
in West Africa, harmful practices of infanticide and trading in body parts of children with 
disabilities rooted in local traditional beliefs have also been documented (see Kumar, 2013).
      Hindu mythology connects physical differences in appearance to the actions 
performed in a past life. For instance, mental and physical sufferings are considered as 
consequences of past inappropriate actions (Whitman, 2007). The stories in Hinduism 
portrayed disabilities negatively by showing people with disabilities as cruel and evil. The 
stories of a blind king Dritarashtra and the lame Shakuni are documented evidences in this 
regard. Lord Vishnu refused to wed a woman because of her being dark and disfigured by 
saying that disabled people have no place in Heaven. He preferred to marry off the woman to 
a tree (Bhambani, 2003; World Bank, 2007).
      In a World Bank survey (2007), half of the respondents believed that disability was a 
curse of God; and thus, disabled people were being denied their entry to temples in extremist 
parts of India (T.A.A, 2013). An identical situation appears in Buddhism as well where 
disabled persons are considered as those who "berated and laughed at those bowing to 
Buddha's" (Buddhist Text Translation Society, n.d.). These individuals are being punished 
now for those misdeeds within a past life. The idea of 'karma' has created a further deception 
in this regard with the super-added suffering of disabled individuals beyond their physical 
sufferings. They are demeaned by giving a title as 'Mongol' (Bualar & Ahmad, 2009). The 
Confucius and Zoroaster theologies also regarded them as 'children of a caring God' - the 
underlying meaning that they have abnormal bodies with 'weak minds' (PACER Center, 
2004).
      There is no single founder in Taoism and Shinto mythology. Taoists believe in 
harmony among nature and humans in an uncertain world with changing ambiguities. For 
Taoists, a main goal of healing is harmony and balance of the yin and yang which can 
reinforce prejudice against disability. According to Taoism, disability results from a 
'disharmonious fusion of nature and man' (Lam, Tsang, Chan, & Corrigan, 2006). Hence, an 
individual with a disability can expose an imbalance, and a problem that needs to be fixed and 
realigned. We can uncover the social meanings of disability in ancient Japan by looking at the 
representative tales of Shinto mythology. According to the ancient tales of the Kojiki and 
Nihonshoki, Hiruko is the first child of Japan's creation god and goddess and is born with a 
physical disability. He is deemed 'a no-good child' by his own parents and therefore, is cast 
away into the ocean (Goto, 2004; Yokota, 2015).
      Sikhism asks for truthful living, contentment, humility and compassion, attainable 
through meditative practice and selfless charitable service. Those who choose to be initiated 
into the Sikh way of life are known as 'Khalsa': meaning 'pure ones'. While talking about 
their spirituality, the first Sikh Guru Nanak (1708) is reported as saying "I am blind, mute, 
crippled and totally lacking in understanding; O God, Preserver of all, please preserve me!" 
(Guru Nanak p. 530, line 1cited in Disability Forum, 2005). It seems referring disability to an 
inability (Hussian, 2005; Sandhu, 2005).
      In other words, the cause of impairment in spirituality is concerned with spiritual 
power. Hence, it develops a pathetic fallacy to address the issue with spiritual maneuvers, 
such as exorcism and faith-healing (Kristiansen, Vehmas, & Shakespeare, 2009). 
Legal Perspective
      The word disability was coined approximately 500 years ago in the legal field 
(Hasnain, Shaikh, & Shanawani,2008). In legal systems, social inequality and rule of law are 
closely related, and the court of law is an arena that is known both to produce and reproduce 
social inequality (Lundberg & Simonsen, 2015). The core concept of intersectionality is the 
entanglement of various differentiating social categories and their impact on individuals, 
social practices, institutions, and cultural beliefs of power relations (Gullikstad, 2013).
      The early laws in ancient societies: Greek, Roman, Arab, and Chinese provided sets of 
compensation schemes with precise payments for the loss of a body part but without taking 
into account the loss of ability to perform specific tasks or jobs. For instance, in Arab law, the 
price of compensation for loss of a body part was fixed according to the worth and value of 
the part. For instance, the loss of a penis was compensated by the amount of length lost, and 
the value of an ear was based on its surface area. In the same manner, all other early 
compensation schemes were also consisted of injury-specific compensation schedules 
(Guyton, 1999).
      Later in more modern times, secular charity took part in addressing disabled people, 
and as a result, disability started gaining legal status to some extent. Greenwood (1996) 
revealed that development and placement of the English Poor Law 1601, the German social 
legislation in 1880, the workers' compensation laws in 1920s, and the Social Security 
Disability Insurance Program in the United States were the first partial legitimizations of the 
inevitable impairment and disability.
      The English Poor Law of 1601 was the first legal response to disability which 
secularized the protection of persons with 'special needs', and scrutinized vagrants getting 
charity together with the people of 'special needs', and categorized needy people on a work-
based system which helped to define disability but narrowly. In actuality, with this law, 
Queen Elizabeth's government only divided the needy into three groups. The disabled persons 
were placed in the group labeled 'helpless poor'. However, the words chosen for labeling the 
group and their tones themselves are indicative of demeaning stereotypic notions against 
disability.
      Although the German social legislation of Bismarck in the 1880s was not so much to 
control vagrancy, its state-sponsored welfare notion based on social hierarchy and hierarchy 
and labor mobility bureaucratized disability with the essence of invalidity and compensatory 
insurance. Social security laws and old-age benefits followed with the medicalization of 
disability i.e. the physician certification of the severity of impairment (Greenwood, 1996). 
Three laws were passed: the Health Insurance of Workers Law of 1883 which provided 
protection against the temporary loss of income as a result of illness; the Accident Insurance 
Law of 1884 that aided workers injured and impaired during job; and the Old Age and 
Invalidity Insurance Law of 1889 to provide a pension annuity for workers who attained 70 
years of age for retirement. However, these laws remained focused only on covering the top 
segments of the blue-collar working class. They were not addressing impairments and loss of 
"abilities" other than in the result of injury. In the United States, in 1930s, the Social Security 
Disability Insurance was adopted to insure those who could not work due to infirmities that 
were not related to work. It was the first initiative to recognize and address disability - the loss 
of ability to perform specific tasks or jobs, yet half-heartedly (Guyton, 1999).
      Guiding principles, in review of the ancient literature, were whether and eventually in 
what ways, ancient systems provided legal protection and secured rule of law for disabled 
people. The development of social policies and 'democratization' in western societies at that 
time only led to increased awareness of the relation between disability and social justice 
(Kermit, Mjøen, & Olsen, 2011; Petersilia, 2001).
      Later in the newly emerging economies, these laws gave new direction and now 
attention was given to finding a better definition of what actually constituted a disability and 
who would qualify as a disabled person. In 1981, the United Nations (UN) declared the 
International Year of Disabled Persons with the aim of promoting recognition and acceptance 
thereby declaring a time-frame in which a series of "Decades for Disabled Persons" were 
identified, and several agencies such as the International Labour Organization (ILO), and 
World Health Organization (WHO) came forward to act on this.
      Initially, the WHO provided a threefold model for Classification of Impairments, 
Disabilities, and Handicaps (ICIDH) and referred to "impairment" as a defect, "disability" as 
a functional limitation, and a "handicap" as an inability to fulfill social roles. Twenty-years 
later, the WHO (2001) presented a revised model for classification of functioning, disability, 
and health - the International Classification of Functioning (ICF) trying to differentiate 
between "body function and structures" and "activities and participation." Both the models 
provided medical experts as the authority based on the fact that they dominated the 
categorization of a disability.
      In addition to models defining disability, laws protect fundamental rights and justice in 
which theoretically, no citizen is above the law. There are several principles pertaining to 
legal protection for individuals with disabilities. Likewise, one should be able to defend one's 
rights and not be deprived of any opportunity in public domain. In a wider sense, legal 
protection is laws whose enactment should be in line with human rights (Kjønstad & Syse, 
2005), such as proclamation of the Convention on Rights for People with Disabilities 
(UNCRPD) in 2006 to reaffirm their rights, respect, and dignity. And states both in the North 
and South by ratifying have made their national policies for disabled people.
      However, these legislations have served more as agencies to control disability as a 
social problem rather to fulfill the real notion of its successful integration and acceptance in 
society. For instance, every state has a 'lip-servicing' national policy for protecting the rights 
and dignity of disabled people. But the so called 'court of law' has left disabled people pity 
for an unending struggle for their dignity and rights. Deaf and people with intellectual 
disability are vulnerable with regard to have a meaningful access to 'legal system' for claim of 
their rights (Pravda, 2011).
Socio-Cultural Perspective
      The socio-cultural theories emphasize that citizenship is not just an issue of individual 
status; it is also a practice that positions individuals in the larger community. This substantive 
approach raises questions of exclusion, obligations, liberty, equality, belonging, agency, 
identity, personhood, social recognition, and self and others (Kabeer, 2002).
      By analyzing the literature in this perspective it is easy to see people with a disability 
can be viewed negatively within a society. One revealing statement was made by the founding 
Father St. Hopkins, who had cerebral palsy, 'My hands may tremble; my heart does not' (see 
NCLD/Y, 2016). It is true; assumptions about any group of people can lead to stereotyping or 
stigmatization in human society (Kleinman, 2006). The traits and values of a certain group 
can be subject to predominant stereotypical reproductions that are based on class, caste, belief, 
and racism stemming from the belief that to be accepted the person must present as physically 
-fit. Stereotypical impressions and beliefs such as this lead to people with disabilities being 
considered a burden rather being capable of a productive existence. 
      When the dubious 'aesthetic sense' of the able-bodied person is considered not only 
ideal but also necessary for social acceptance and productivity the confidence of the person 
with a disability can be affected. Ellis (2000) pointed out that "modern society is averse to 
risky bodies and anxieties about the corporeality of the body revolve around concerns of 
preserve independent bodies, of health, fitness, and youth" (p. 17). As a result, cultural 
expectations that confirm Ellis's argument reinforce efficacy of what is normal and creates 
barriers to those who are facially disfigured and not able to present an expected body-wise 
aesthetic appearance.
      Imrie (2001) by quoting Hawkesworth denoted such persons as 'dirty', 'disordered', 
and 'object of disdain' and this lack of desirability pushes them back into the shadows and 
away from mainstream society. Nothing could be further from the truth, however, and this 
devaluation upon looks alone takes away for an individual's ability to present how he/or she 
actually feels and what can be contributed.
      Habitus of disabled people is termed as 'dys-appearing bodies' a deviation from bio-
medical norms (Leder, 1990); and, is rarely believed to be included in policies and plans 
(Mitchell, 1996). Thus, the physically disabled are often believed to be out of place and 
regarded only as a figure of fun and ridicule (Imrie, 2001). Marks (1999) by drawing attention 
to "the particular habitual way of relating to environment the body adopts" argued that 
impaired bodies are symbolically marked out that deprives life opportunities and in turn 
influences their social standing. Likewise, Miles (2007) pointed out that people with non-
normative bodies in rural Punjab were facing a stigma of labeling them as 'untouchables'. It 
indicates that disability is still a taboo in societies with unsteady progress made towards 
disability rights.
      In short, meshing of these socio-cultural values, attitudes, and political practices of the 
able-bodied have differentiated persons with a disability as abnormal human beings. As a 
result, this perception of inferiority or punishment as brought about purposefully by the 
divine, has left no space for such persons in a community as well as in the hearts of masses.
Developmental Perspective
      No doubt, social theories and theories of justice have contributed to addressing the 
issues of disability and have evolved with a range of frameworks and models to deal with 
disability either medically or socially that are designed to ameliorate its effects on individuals 
with a disability. These different understandings of the relationship of impairment to 
limitation inform two contrasting approaches to disability and development. When the 
contributions of these two approaches are summarized, a picture is presented that has tried to 
address disabled persons by considering them either more or less as permanently dependent 
on society rather than ensuring their free will and fair access and success.
      Throughout history, the pioneer medical model has viewed disability and impairment 
as an intrinsic 'problem' that belongs to the individual. When viewed as a personal problem - 
means societal support is not needed. The model ignores or underestimates the contribution of 
social and other environmental factors to the limitations faced by people with disabilities 
(Davis, 2002; Shakespeare, 2006). For instance, if not being able to work is a personal issue 
or a result of divine choice when a wheelchair user is unable to get into a building because of 
steps or a stair it is viewed as the problem of the individual not that of the stair or steps. 
Hence, the rehabilitation approach is followed with such arrangements that leave people with 
disabilities in isolation from treatment to education such as recommending them to stay at 
home and receive separate schooling. The premises postulated in these rehabilitation 
approaches particularly in developing societies, have adversely affected and led persons with 
disabilities to become passive recipients or beggars.
      In contrast, the social model of disability developed in the 1970s by activists in the 
Union of the Physically Impaired Against Segregation (UPIAS) understands disability as a 
relation between an individual and his/or her social environment: the exclusion of person with 
certain physical characteristics from major domains of social life. Such exclusion is 
manifested not only in deliberate segregation, but in a built environment and organized social 
activity that restricts the participation of individuals labeled as disabled. For instance, the 
social model sees the stair or steps as a disabling barrier and hence, considers society as the 
factor that disables the people (Oliver, 1996).
      More moderate versions of the social model maintain their emphasis more on social 
causes while insisting on the interactive character of disability (Altman, 2001; Bickenbach, 
1993). It draws an idea of 'inclusive' society by advocating for adjustments focusing on 
maintaining a disabled-friendly physical environment in the homes or in helping with 
transportation as well as the various destinations. Besides being a dominant paradigm for 
understanding disability, the social model is however, less concerned with the innate 
desirability of disabled persons. Several critics argued that extreme versions of the social 
model implausibly deny or undermine the role of impairment itself as a source of 
disadvantage (Anastasiou & Kauffman, 2013; Shakespeare, 2006; Terzi 2009).
      To summarize, the medical as well as the social model both rest on a false dichotomy 
of biological impairments and social limitations where biological impairment and social 
exclusion are deeply interwoven and difficult to tease and deal apart (Martiny, 2015). Hence, 
the disabled people particularly in developing world are living invisibly in their community 
besides with the possession of some sort of compensatory resources.
Conclusion
      From the literature critically reviewed from various perspectives, it becomes evident 
that historically, the powerful effect of physical appearance on how individuals were 
evaluated remains prominent in how they were identified and subsequently treated. This is 
highlighted by the widespread belief that physical-attractiveness stereotypes have largely 
prevailed where attractive humans are believed to possess various desirable qualities, whereas 
those whose appearance was less pleasing were viewed negatively.
      It is clear that spirituality and religious beliefs create the foundation for interpretation 
of events and the meaningful experiences that are attributed to individuals with or without 
disabilities (Mathewes, 1995). Starting with the belief that human beings are created in the 
image of God, it postulates that every human being is sacred and should be treated with 
dignity (Pyne, 1999). Yet, the brief and incomplete interpretations of the sacred texts and 
theological religions (some of them presented above) make it more complex for believers. 
Some believers struggle and when interpretations are ambivalent and contradictory, myths 
about inferiority can be propagated. Through misinterpretation these lessons and readings can 
foster the dogma that disabilities are 'divine punishments' that could mislead people to hate 
and turn their back on people with disabilities except lip-servicing. As a result, this negative 
connotation leads impaired bodies to be ridiculed (Imrie, 2001).
      Similarly, stressing socio-cultural ideals seeking and praising body-wise perfection 
and achievements, creates a fear of people with a disability that ultimately leads to 
stigmatizing those with body-wise deficiencies as 'deviants' by the culture. The purpose of 
this article was to highlight some of the perspectives that can help people to better understand 
the foundations of the pre-conceived notions that they may hold and how these beliefs can be 
to the determinant of disabled people. It is clear that many of these negative stereotypes are 
deeply ingrained in a culture and will not easily be transformed. Proper education and 
awareness, however, may be the first step to starting to change some of these negative 
perceptions. Getting a better understanding as to why people feel and act as they do is the 
second step, then allowing all people to recognize the inner beauty of people with non-
normative bodies, which in-turn will free them from the 'cult of normalcy' (Reynolds, 2005). 
Once a proper religious education and awareness is extended, it will help to bolster a 
religiously defensible sound: "God loves people regardless of their physical appearances and 
genetic makeup, and we should do likewise" (Peters, 1996). Thus, people can come to 
acknowledge the belief that disabled people are also beautiful and disability is not a curse; an 
environment ripe for practice and policy change will result.
Mahtab Ahmad, Ph.D., after completing his PhD in the Regional and Rural Development 
Planning Field of Study at the Asian Institute of Technology, Thailand, has served as an 
Assistant Professor/Coordinator of the Department of Sociology at Bahauddin Zakriya 
University Bahadur Campus, Layyah, Pakistan, and is currently serving in Population Welfare 
Department/visiting faculty at BZU Campus, Layyah. His research interests include 
Community Development; NGOs & Development; Education & Development; Aging & 
Disability; Population & Health; and Conflict & Development. <mahtabdgk@gmail.com>
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Can We Say They are also Beautiful? Disability is not a Curse by Mahtab Ahmad is licensed 
under a Creative Commons Attribution 4.0 International License. Based on a work at 
http://rdsjournal.org/index.php/journal/article/view/796. Permissions beyond the scope of this 
license may be available at https://www.rds.hawaii.edu.
        
Research Article
Aversive Ableism: Modern Prejudice Towards Disabled People
Carli Friedman, PhD
Council on Quality and Leadership
Abstract: The aim of this study was to examine the patterns of explicit (conscious) and 
implicit (unconscious) disability prejudice. The majority of participants were implicitly 
prejudiced against disabled people despite having low explicit prejudice. This pattern is in 
alignment with aversive ableism - disability prejudice was present among those who meant 
well.
Keywords: aversive ableism; prejudice; ableism
      Unlike the historically prominent medical model of disability that frames disability as 
an individualized problem one "suffers" from and needs treatment for (Linton, 1998), the 
ideological shift to the social model conceptualizes disability as something that is socially 
constructed-a form of social oppression. Under this model, Barnes and Mercer (2003) 
"conceptualize disability as a form of social oppression akin to sexism and racism, although it 
exhibits a distinctive form, with its own dynamics...as a historically and culturally specific 
form of social oppression" (p. 18). Abberley (1987) also argues that the social model or social 
theory of disability is strongest when it is based on the concept of oppression. Abberley 
discusses oppression as socially created disadvantages that are placed upon disabled people. 
This includes the recognition of the social origins of impairment, and opposition to the 
economic, social, environmental, and psychological disadvantages imposed on disabled 
people.
      Systemic discrimination, which is rooted in history, constitutes a significant amount of 
the oppression disabled people face. Barnes (1997) suggests, "To appreciate fully the extent 
and significance of the oppression of disabled people an understanding of history and its 
relationship to western culture: the central value system around which western society is 
clustered, is vital" (p. 4). According to Barnes, one of the important tenets of ancient Greek 
and Roman society was citizenship. The creation of the civilized man justified oppression 
because the creation of this category (civilized) also created an opposite; it made others, such 
as disabled people, uncivilized and justified their unequal treatment as such (Barnes, 1997). In 
early Christian and Jewish culture impairments were viewed as God's punishment for 
wrongdoing (Barnes, 1997). In the 16th century, plagues, poor harvests, and reduced church 
wealth pressured the State to intervene in poverty (Barnes, 1997). In doing so, the first poor 
laws created a distinction between deserving and undeserving poor. Industrialization, which 
began in the 18th century, brought a period of enlightenment that emphasized science and 
reason (Barnes, 1997). Barnes argues this is where disability in its current form emerged as a 
result of productivity, medicalization, and the creation of normality.
      In more recent history, disabled people were first addressed as a class by United States 
policy that defined them as sickly, such as ugly laws or "unsightly beggar ordinances" 
(Schweik, 2009, p. 140). Developed out of fear, these policies suggested purpose was to 
prevent people from getting disease by making sure they did not gaze upon those who were 
"ugly;" they also served to keep disabled people out of sight (Schweik, 2009). Another 
example of disability discrimination is when disability was used to justify the oppression and 
unequal treatment of women and other social minority groups in America (Baynton, 2001). 
According to Baynton, in the past Black people were seen as a disabled race in terms of 
biology because they were thought to have weaker organs and "suffered" from conditions 
such as Drapetomania, which caused enslaved people to run away. Moreover, suffragettes 
argued, "They were not disabled...and therefore were not proper subjects for discrimination" 
in order to win the right to vote (Baynton, 2001, p. 34). The linking of Black people and 
women with disability revealed not only an attempt to portray these groups as weak but also 
served to reinforce stereotypes of disability as unfit and therefore deserving of "less than."
      Although these historical examples may seem like ignorant decisions of the past, 
disabled people still face pervasive discrimination. For example, about 50% of disabled 
people experience poverty (Fremstad, 2009). The unemployment rate for disabled people has 
never been below its pre-civil war rate of 70% in the United States (Russell, 2000). To this 
day, disabled people are still forcibly sterilized for eugenic reasons (Alexander & Gomez, 
2017; Garland-Thomson, 2017; Tilley, Walmsleya, Earlea, & Atkinsona, 2012). [Similarly, 
women of color are still forcibly sterilized for eugenic motivations (Johnson, 2013; Krase, 
2014; Nittle, 2017) that parallel Bayton's (2001) discussion of a portrayal of a 'disabled race' 
above, indicating traditional forms of prejudice and discrimination are far from resolved.] 
These are just a few examples of how disabled people are commonly discriminated against on 
both individual and systemic levels. Indeed, ableism, which Linton (1998) defines as 
"discrimination in favor of the able-bodied," including "the idea that a person's abilities or 
characteristics are determined by disability or that disabled people as a group are inferior to 
nondisabled people" (p. 9), still occurs today, although perhaps less often in the form of 
extremely overt policies such as ugly laws. Instead, many disabled people face subtle 
discrimination which is embedded in structures and social systems (Chen, Ma, & Zhang, 
2011; Doyle, 2002; Keller & Galgay, 2010; Proctor, 2011; Rojahn, Komelasky, & Man, 
2008). Ableism manifests itself through institutional, systemic, and subtle discrimination, 
however research has tended to focused less on subtle and implicit (unconscious) prejudice - 
everyday prejudice (Harpur, 2011; Keller & Galgay, 2010; Linton, 1998; Thompson, Bryson, 
& de Castell, 2001). Fortunately, disability's theoretical and policy designation as a social 
minority, analogous in some ways to race, allows for other theories about discrimination to be 
investigated for relevance to disability.
Social Psychology Research on Modern Racism
      The field of social psychology has examined different forms of modern implicit racism 
at length. Beginning in the 1950s the field changed to view prejudice as a normative process 
thereby shifting the focus away from pathology. As a result, this wave of study saw prejudice 
as existing in a large majority of people rather than a small subset of the deviant population 
(Dovidio, 2001; Gamst, Liang, & Der-Karabetian, 2011). Doing so birthed major research 
theories on unintentional and subtle modern biases such as those examined by symbolic1 
racism and aversive racism theories.
      Unlike old-fashioned racism that looked at overt and dominant prejudice, symbolic 
racists believe racial discrimination is no longer a serious problem, disadvantaged Black 
people are just unwilling to take responsibility for their lives, Black people are demanding too 
much too quickly and thus going beyond what is "fair," and the special treatment of Black 
people is not justified (Henry & Sears, 2002; McConahay & Hough, 1976; Sears & Henry, 
2003, 2005; Sears, Henry, & Kosterman, 2000). Symbolic racism is rooted in abstract beliefs 
about socialized values, which Black people supposedly violate (Henry & Sears, 2002, 2008; 
McConahay & Hough, 1976; Sears et al., 2000). In order to be subtle and not overt, symbolic 
racism is typically expressed through symbols such as opposition to busing for integration. 
Symbolic racism is related to racial antipathy and conservative values, especially because "it 
is based on the belief that Blacks violate key American values, particularly the idea of 
individualism, the belief in working hard to get ahead in life" (Henry & Sears, 2008, p. 111). 
As a result, it is not uncommon for symbolic racism to influence political attitudes (Henry & 
Sears, 2008). However, symbolic racism operates separately with conservatism:
"General conservatism and traditional racial prejudice are psychologically separable 
and distinctive, but symbolic racism is grounded about equally in both. That is, 
symbolic racism is the glue that links political conservatism to racial prejudice" (Sears 
& Henry, 2003, p. 264).
      Unlike symbolic racism that looks at subtle discrimination that exists among 
conservatives, aversive racism theory specifically focuses on those people who are 
progressive and well-meaning yet still participate in biased actions or thought (Dovidio, 
Pagotto, & Hebl, 2011; Gaertner & Dovidio, 1986; Gaertner, Dovidio, Nier, & Hodson, 
2005). Aversive racists are those who believe they are not prejudiced-in fact, egalitarian 
values are important to their self-image-yet feel discomfort around Black people. When 
situations are not ambiguous and norms for behavior are well defined they will not participate 
in prejudiced acts or hold prejudiced beliefs; in fact, they may go out of their way to appear 
non-prejudiced in these situations (Dovidio & Gaertner, 2008; Gaertner & Dovidio, 1986, 
2005). However, aversive racists act in prejudiced ways in ambiguous situations where it is 
harder to be "caught" being racist (Dovidio & Gaertner, 2008; Gaertner & Dovidio, 1986, 
2005; Gaertner et al., 2005; Murrell et al., 1994). Thus, this form of racism theory examines 
aversive racists' anxiety and discomfort around Black people, how this prejudice is 
inconsistent with their self-concepts, and the rationalized disassociated products of these 
inconsistencies.
Modern Disability Prejudice
      Mainstream narratives portray disabled people in many harmful ways. For example, 
disabled people are commonly portrayed as pitiful, helpless, and bitter. These portrayals stress 
that disability is inherently negative and problematic and accordingly assumes disabled people 
are incapable and resentful. These portrayals of disability also inform nondisabled people's 
attitudes towards disabled people. Although they may hold these problematic and negative 
views about disability, nondisabled people often simultaneously associate positive socially 
desirable traits to disabled people. These positively held beliefs are problematic not only 
because they create unfair expectations but also because they tend to impact how nondisabled 
people interact with disabled people. Thus, disability is located at an intersection unique to 
most social minority groups in that disabled people are both viewed negatively and often 
treated with particular care. These layers of attitudes are why it is particularly important to 
examine the complexities of disability attitudes and ableism.
      Disability attitudes may appear positive thus making disability prejudice more hidden 
in its modern form. As disability prejudice can be confusing because it is almost always 
exclusively implicit rather than explicit (conscious), aversive racism theory may be a great 
window to examine it. I theorize that nondisabled people's interaction with disabled people is 
more likely to be prejudiced in an aversive rather than symbolic fashion because social norms 
dictate it is not acceptable to discriminate (at least overtly) against disabled people - people 
would look 'bad' doing so. Social norms also dictate helping those in inferior and pitiable 
positions; people see disabled people as more deserving of help and positive treatment 
(Appelbaum, 2001; Garthwaite, 2011; Imrie & Wells, 1993; Stewart, Harris, & Sapey, 1999). 
Thus, the aim of this study was to establish a construct of aversive ableism by examining the 
patterns of explicit and implicit disability prejudice. To do so, this study operated under the 
following hypothesis: the majority of participants will be prejudiced in the aversive ableism 
pattern. This hypothesis was examined by comparing scores of participants on the explicit 
Symbolic Ableism Scale (SAS) and the Disability Attitudes Implicit Association Test (DA-
IAT). A regression of explicit and implicit prejudice was conducted with linear, quadratic, and 
cubic components in order to explore the best-fit form of the relationship. Then, participants' 
scores were categorized into prejudice styles using an adapted version of Son Hing, Chung-
Yan, Hamilton, and Zanna's (2008) two-dimensional model of prejudice.
Methods
Participants
      Since it was expected that disability prejudice most commonly operates implicitly, 
different groups of participants were used to maximize the presence of different types of 
implicit prejudice. That is, to try to get the widest range of implicit prejudice instead of those 
who are all very prejudiced. Participants were graduate and undergraduate students recruited 
through a large diverse urban university. Graduate students were working towards a doctorate 
or master's degree in a disability related field, while the undergraduate students came from a 
wide variety of disciplines across the university but were taking an undergraduate level course 
related to disability. It was theorized that these participant groups would produce a spectrum 
of implicit prejudice because of their varying relationships with disability. It was expected 
that the graduate students would serve as the 'low norm' as they would have lower implicit 
levels of prejudice or favor disabled people because of their interaction with disability studies 
and the disability community. Students in undergraduate level classes self-selected to take 
disability courses so it was expected they would have somewhat less implicit prejudice than 
the general population but it is likely they still have implicit prejudice because they are less 
likely to have the depth of understanding of disability studies graduate students.
      To determine the minimum necessary sample size, an a priori G*Power analysis was 
completed using G*Power 3.1 (Erdfelder, Faul, & Buchner, 1996; Faul, Erdfelder, Buchner, 
& Lang, 2009; Faul, Erdfelder, Lang, & Buchner, 2007). As the aim was to have large 
variation in D scores (DA-IAT), for the G*Power calculation the group means used were from 
-.65 to .65; M = 0, SD = .44; power (1 - ß) = .95; a = .05. The analysis indicated that a total 
sample of 35 people would be needed for the large effect size (?2 = .93). To strengthen the 
research, the goal was to have about 100 people complete the study. However, size was 
dependent on who volunteered for the study, thus we had 84 participants. Participant 
demographics can be seen in Table 1.
 
Table 1: Demographic of Sample
Demographics of Sample
Characteristic
n
%
Gender
 
 
 
Woman
71
84.5
 
Man
12
14.3
 
Neither
1
1.2
Age range
 
 
 
18-25
66
78.6
 
26-33
14
16.7
 
34-40
2
2.4
 
41-48
1
1.2
 
49-56
1
1.2
Disability
 
 
 
No
67
79.8
 
Yes
14
16.7
 
Prefer not to say
3
3.6
Race
 
 
 
White
32
38.1
 
Asian or Pacific islander
22
26.2
 
Hispanic or Latino/a
16
19
 
Black
6
7.1
 
Middle Eastern
4
4.8
 
Interracial
3
3.6
 
Other
1
1.2
Education level
 
 
 
Undergraduate
68
81.0
 
Graduate
16
19.0
Political orientation
 
 
 
Liberal
48
57.1
 
Conservative
8
9.5
 
Other
28
33.3

Instruments
Disability Attitudes Implicit Association Test
      One of the most prominent implicit methods is the Implicit Associations Test (IAT), a 
projective method (Greenwald, McGee, & Schwartz, 1998). The IAT presents participants 
with two target-concept discriminations (e.g., Black and White) and two attribute dimensions 
(e.g., pleasant and unpleasant). Participants must categorize stimuli as belonging to the 
categories in different stereotype congruent and incongruent combinations. By measuring 
reaction time the IAT is able to examine associations - the quicker the reaction time, the 
stronger the association between groups and traits (Karpinski & Hilton, 2001).
      The DA-IAT (Greenwald et al., 1998) is the most prominent disability related IAT. 
The DA-IAT is similar to the standard IAT, except it uses symbols to represent 'disabled-
persons' and 'abled-persons' target-concept discriminations and word stimuli for 'good' and 
'bad' attribute dimensions. For example, the wheelchair symbol represents disabled people 
while someone skiing represents a nondisabled person. Several studies have shown the DA-
IAT's construct validity (Aaberg, 2012; Pruett, 2004; Pruett & Chan, 2006), discriminant 
validity (White et al., 2006), and reliability (Pruett, 2004; Pruett & Chan, 2006; Thomas et al., 
2014). Moreover, research has shown that even when participants try to fake an IAT, faking is 
evident (Cvencek et al., 2010). The IAT has built in safeguards against participants selecting 
at random or trying to fake. The updated scoring algorithm includes eliminating any trials 
with response latencies of greater than 10,000 milliseconds (Greenwald et al., 2003). 
Moreover, any subjects who have 10% or more trials less than 300 milliseconds will be 
removed (Greenwald et al., 2003). 	
Symbolic Ableism Scale
      The Symbolic Ableism Scale (SAS) (Friedman & Awsumb, in press) was used to 
measure participants' explicit bias. The SAS presents participants with thirteen statements 
about disability on a seven-point Likert scale (from strongly disagree to strongly agree). For 
example, one item is: "disabled people are demanding too much from the rest of society." The 
SAS has been found to have good construct validity (Friedman & Awsumb, in press).
Procedure
      After approval from the university's Institutional Review Board, this study was 
administered to participants on a unique website. After being presented with the informed 
consent, participants received instructions about the DA-IAT; they were told to push the 'E' 
key if the stimuli belonged in the categories listed on the left and the 'I' on the right. They 
were told to do this as quickly as possible but with the least amount of errors. If participants 
placed stimuli to the wrong side a red X appeared in the middle of the screen until they made 
the correct choice.
      The DA-IAT involves seven blocks (rounds) of categorization tasks. In the first DA-
IAT practice block the screen shows only the target-concept discriminations with 'abled-
persons' on the left of the screen and 'disabled persons' on the right. Participants were 
presented with 20 trials of randomized disabled and abled-persons stimuli in the middle of the 
screen and were asked to sort them accordingly. The second practice block is similar; 'good' 
is on the left of the screen and 'bad' is on the right and participants sort the related good and 
bad stimuli for 20 trials. For block three both 'abled-persons' and 'good' are on the left and 
'disabled persons' and 'bad' are on the right. They were then presented with all the stimuli 
options for 20 trials. Block four is exactly the same except it lasts for 40 trials. Block five, 
which lasts 40 trials, is also a practice block where only 'bad' is listed on the left and 'good' 
on the right and they were only presented with good and bad stimuli. This gives participants 
the opportunity to get used to the switched location of these two attribute dimensions. Block 
six begins the stereotype inconsistent items. For both block six and seven 'disabled persons' 
and 'good' are on the left and 'abled-persons' and 'bad' are on the right. They are presented 
with all of the stimuli again. Block six includes 20 trials while block seven includes 40. 
Participants were randomized to receive either this order of blocks or stereotype inconsistent 
items in block three and four (disabled persons and good and abled-persons and bad) and then 
consistent in blocks six and seven (disabled persons and bad and abled-persons and good). 
      After completing the DA-IAT, participants completed the SAS. The IAT was 
administered before the SAS to avoid any possible priming. Finally, participants answered 
questions about their demographics.
Analysis
      SPSS 21 was used for all analysis. The implicit D scores from the DA-IAT were 
analyzed using the updated IAT scoring procedure (Greenwald et al., 2003). D scores were 
produced for each participant based on their response latencies in stereotype consistent and 
stereotype inconsistent blocks. Scores of implicit prejudice (DA-IAT) reported the strength of 
preference for nondisabled or disabled people. D scores larger than .14 reveal a preference for 
nondisabled people over disabled ones (Aaberg, 2012; Greenwald et al., 2003). Scores of .15 
to .34 reveal a slight preference for nondisabled people, .35 to .64 a moderate preference, and 
.65 and greater a strong preference (Aaberg, 2012; Greenwald et al., 2003). Negative values of 
the same values above reveal preferences for disabled people, and scores from -.14 to .14 
reveal no prejudice (Aaberg, 2012; Greenwald et al., 2003).
      Explicit measures of the symbolic ableism seven-point Likert scale were first reverse 
scored when applicable and then recoded from one to seven to zero to one in accordance with 
the SAS. An explicit disability prejudice SAS score was calculated for each participant using 
the mean score of these Likert items.
      The relationship between implicit and explicit prejudice was examined using linear, 
quadratic, and cubic regressions to determine the best-fit form of the relationship. Then, in 
order to determine types of prejudice present in alignment with Son Hing et al.'s (2008) two-
dimensional model of prejudice participants' explicit and implicit scores were categorized as 
high and low. There are no standardized cut-offs for high and low for explicit and implicit 
prejudice levels; Son Hing et al. (2008) comment, "a potential problem with this approach [of 
classifying as explicit and implicit scores as high and low] is that cut-off scores are sample 
specific and malleable" (p. 983). For this reason, implicit scores were cut-off based on the 
moderate prejudice level (.35) according to IAT standards. The SAS cut-off used was the mid-
point equivalent on the Likert scale (.50). After the explicit and implicit scores were 
categorized as high and low, profiles from Son Hing et al.'s (2008) two-dimensional model of 
prejudice were used to categorize types of prejudice: high explicit and high implicit are 
symbolic prejudiced; high explicit and low implicit are principled conservatives2; low explicit 
and high implicit are aversive prejudiced; and, low explicit and low implicit are truly low 
prejudiced.
Results
      The mean of all participants' (n = 84) explicit scores was .31 (SD = .13) (moderate 
explicit prejudice). Figure 1 details the density and distribution of the explicit prejudice 
results. The results on the Shapiro-Wilk's test were not significant suggesting the scores were 
normally distributed.
 
Figure 1. Beanplot of explicit prejudice. The beanplot's shape details explicit prejudice's 
density while the beans mark the distribution of scores. The beanplot indicates most people 
scored within .2 and .4 on the SAS.
      On the DA-IAT, the participants had a mean D score of .45 (SD = .44) (moderate 
preference for nondisabled people). This score was significantly different from zero according 
to a one-tailed t-test (t(81) = 9.28, p < .001), indicating an implicit preference for nondisabled 
people. In this study 79.3% (n = 65) of participants preferred nondisabled people, 9.8% (n = 
8) preferred disabled people, and 11% (n = 9) had no preference. The majority of participants 
strongly preferred nondisabled people; see Figure 2 for the distribution of scores. It should be 
noted two participants' D scores were excluded from the analysis. One participant's D score 
was excluded because it was an extreme outlier that affected the normality and caused a failed 
Shapiro-Wilk test. The other participant's D score was excluded because of an error rate 
greater than 30%3, suggesting they were not following instructions or did not understand the 
task.
 
Figure 2. Implicit preferences for nondisabled and disabled people. The figure indicates the 
majority of people preferred nondisabled people, with fewer people scoring as having no 
preference, or preferring disabled people.
      A centered regression analysis was conducted to evaluate the relationship between 
explicit and implicit scores and the prediction of the implicit scores from the explicit scores. 
The variables have a quadratic relationship, which was significant F(2, 79) = 5.31, p = .007. 
The regression equation for predicting the implicit scores from the explicit scores is
      Implicit Score = .52 + .98(Explicit Score - .31) - 4.41(Explicit Score - .31)2
      For example, according to the model, a person with an explicit score of 0 would be 
expected to have an implicit score of -.21 (slightly prefer disabled people), an explicit score of 
.25 would indicate an implicit score of .45 (moderately prefer nondisabled people), and an 
explicit score of .50 would suggest an implicit score of .55 (moderately prefer nondisabled 
people). Both the explicit mean deviation score and the quadratic term were significant at t = 
2.46, p = .016 and t = -2.00, p = .049 respectively. Although statistically significant, this 
model only predicts 12% of the implicit scores so it is still a fairly weak relationship.
      In order to determine types of prejudice present in alignment with an adapted version 
of Son Hing et al.'s (2008) two-dimensional model of prejudice participants' explicit and 
implicit scores were categorized as high and low. Using these criteria participants' scores 
were then grouped into symbolic ableist (high explicit, high implicit), principled 
conservatives (high explicit, low implicit), aversive ableist (low explicit, high implicit), and 
truly low prejudiced (low explicit, low implicit). Participants were classified as 5 symbolic 
ableists, 44 aversive ableists, 2 principled conservatives, and 31 truly lowly prejudiced 
(Figure 3).
      
       
Figure 3. Styles of prejudice (n = 82). This figure shows the breakdown of participants' 
ableism types; the majority of participants fell into the aversive ableist category with fewer 
truly low prejudiced, symbolic ableist, or principled conservative.
Discussion
      Reconceptualizing ableism in a less dichotomous nature can help us reframe ableism 
to better capture, and in the future change, the complexities of everyday unconscious 
microaggressions that are so detrimental to disabled people. In order to help complicate 
current understandings of ableism - to interrupt a dichotomous understanding of ableism in 
which one is prejudiced or not - this study established the construct of aversive ableism by 
examined the patterns of explicit and implicit prejudice using an adapted version of Son Hing 
et al.'s (2008) two-dimensional model of prejudice. Doing so was a necessary first step so that 
the intricacies of these complex and multidimensional forms of prejudice can be mapped and, 
ultimately, reduced.
      It was theorized that nondisabled people's interaction with disabled people is more 
likely to be prejudiced in an aversive (low explicit, high implicit) rather than symbolic fashion 
(high explicit, high implicit) because social norms dictate it is not acceptable to discriminate 
(at least overtly) against disabled people. In alignment with the study's hypothesis, findings 
revealed although explicit scores were fairly low, suggesting people consciously held (or 
recognized holding) little prejudice, the majority of the participants preferred nondisabled 
people implicitly, indicating they were indeed prejudiced. This pattern is in alignment with 
aversive ableism. Using this model, the majority of participants were aversive ableists (54% 
aversive ableists, 38% truly low prejudiced, 6% symbolic ableists, and 2% principled 
conservative). Our findings indicate many people are more prejudiced against disabled people 
than they understand or recognize; in fact, our findings suggest that this may be the most 
common type of modern prejudice - those who feel positively but hold negative attitudes 
about disabled people.
      Now that the two-dimensional concept of aversive ableism has been documented, all 
aspects of how this prejudice operates must be understood. A necessary next step to build 
upon and map this concept is for research to now explore the differentiations between 
aversive ableism and aversive racism. The subtle experiences of discrimination disabled 
people face are particular to them because of both their unique history and their present-day 
experiences as a discriminated against social minority. On the basis of common disability 
narratives and stereotypes, there will be some differences between aversive racism and 
aversive ableism both in context and expression; aversive racism cannot just be "applied" to 
disability. These disability narratives are not only harmful but also differentiate disabled 
people from other social minority groups. For example, the inspiration narrative that dictates 
that everything disabled people do is inspirational because they must 'overcome' their 
disability is harmful for disabled people because it implies either that they are not normal or 
that they achieve monumental tasks 'despite' their disability. Not only does this not reflect the 
lived reality of most people, it also creates unattainable expectations for disabled people by 
perpetuating the myth that their true disability is a bad attitude instead of institutional barriers 
(Tighe, 2001). Another disability narrative that most likely interacts with aversive ableism is 
pity. Although having pity for someone is not inherently negative, the pity narrative is 
harmful for disabled people because it assumes that they are inherently tragic because of their 
disabilities, that they are incapable, or that they are victims (Reid, Stoughton, & Smith, 2006). 
These factors, among others, separate disabled people and the discrimination they face from 
other social minorities. For this reason, their experiences will be unique. Aversive ableism is 
not likely just to be aversive racism by another name applied to another group; rather, it likely 
builds on an understanding of prejudice often too subtle to articulate in rapid social interaction 
but which affects the group immensely. These layers of attitudes are why it is particularly 
important to examine nondisabled peoples' explicit and implicit attitudes about disability, 
especially how they may differ from similar forms of racism. Aversive racism has useful 
lessons for disability; however, it also raises many points of difference between race and 
disability that suggest a need for a unique concept of aversive ableism that is ultimately 
unique from aversive racism.
      This study's evidence of aversive ableism is one of the first steps in developing the 
construct of aversive ableism. However, aversive ableism, like aversive racism, is a complex 
concept that is beyond the scope of just one study. Future research can "examine prejudice as 
it relates to unambiguously meaningful behaviors and among relevant populations... to make 
progress in this debate" (Payne, Krosnick, Pasek, Lelkes, Akhtar, & Tompson, 2010, p. 368; 
von Hippel, Brener, & von Hippel, 2008). This includes examining how it may differ from 
aversive racism theory as suggested above but also future aversive ableism studies could 
benefit from expanding to larger groups of participants from wider backgrounds. For example, 
one possibility for future study of aversive ableism is to focus on different groups such as 
direct support professionals or families of disabled people that interact with disabled people 
yet may hold aversive attitudes.
      Another avenue for the future to explore is the relationship between political 
orientation and symbolic and aversive ableism. The differentiation between conservatives and 
liberals' disability prejudice may be less clear-cut than with racism because of complex 
attitudes towards disabled people and social norms that portray disabled people as deserving 
of positive and favorable treatment. Conservative 'pull yourself up by your bootstrap' 
individualism and dislike for welfare systems may certainly interfere with their views of 
disabled people; however:
"Unlike the experience of many minorities, opposition to disability rights seldom has 
been marked by overt displays of bigotry or hostility; and politicians have often been 
included to provide sympathetic endorsements for the goals of disabled persons, even 
when they have shown strong resistance to the claims of other disadvantaged groups" 
(Hahn, 2005, p. 42).
      Moreover, as Berdein (2007) found principles are not consistent across people, and 
some conservatives apply and abandon their principles differently depending on race, the 
differentiation between principled conservatism and symbolic ableism needs to be explored 
more in depth.
      Although this study has uncovered many aspects of aversive ableism, it is not without 
its limitations. One major limitation of this study was related to the subject pool. Because of 
financial restrictions this study's participants were all students. Although there is a precedent 
for using university students as participants, especially in social sciences research, students 
are young and more often from middle class backgrounds (Peterson, 2001; Peterson & 
Merunka, 2014; Walpole, 2003). Despite recruitment occurring at a very diverse urban 
university, it is possible the results would be different if it had been possible to have random 
subjects from the general population. Similarly, although the study aimed for an even gender 
breakdown, the majority of participants were women. This may have implications as women 
in Hirschberger, Florian, & Mikulincer's (2005) study had more favorable attitudes towards 
disabled people than men. This study took place in an university environment; it is possible 
aversive ableism is enacted differently in these settings than in the real world. This subject 
pool is also limited by the volunteer basis of its participants. There is a chance of self-
selection bias as a result. Similarly, another limitation of this study was that participants were 
more educated about disability than the general population. This is tied to a potential selection 
bias because all participants are in disability related courses. It is likely that the general 
population of disabled people would have more implicit prejudice (Nosek, Smyth, Hansen, 
Devos, Lindner, Ranganath, & Banaji, 2007) and therefore significantly less people would fall 
into the 'truly low prejudice category.'
      Once research has shown a more in depth understanding of aversive ableism, work can 
begin to reduce this subtle yet common form of disability prejudice. Aversive forms of 
prejudice are not so easily reduced because people already believe they are being egalitarian - 
they are not motivated to change because they do not realize they are prejudiced (Gaertner & 
Dovidio, 1986, 2005). Gaertner et al. (2005) explains, "Like a virus that has mutated, racism 
may have evolved into different forms that are more difficult not only to recognize but also to 
combat" (p. 385). While its inevitability is often assumed, the social devaluation of disabled 
people is not inevitable and can be reduced, although not easily (Gill, 2000; Susman, 1994). 
Although according to literature on aversive racism simply telling people they are prejudiced 
is not an effective intervention, in terms of reducing aversive racism, the most prominent 
intervention is the common ingroup identity model, which in recognizing the role of social 
categorization, uses the positive consequences of ingroup membership and recategorization 
instead of trying to reduce the negatives of outgroup membership (Dovidio & Gaertner, 2004; 
Dovidio, Gaertner, Anastasio, & Sanitioso, 1992; Gaertner & Dovidio, 2005; Murrell et al., 
1994). Future research should examine if the common ingroup identity model is also a useful 
intervention to reduce aversive ableism. In the meantime, at the very least, it may be more 
fruitful for people to critically examine ones' own privileges and prejudices than to do 
nothing. Certainly, no harm is going to come from figuring out how one is committing 
microaggressions and consciously trying to change ones' behavior.
      Many participants in this study believed they viewed disabled people positively. Yet, 
the types of discrimination and prejudice that have been evidenced for so long in literature 
were still present among people who meant well. This pattern of prejudice - aversive ableism 
- may be one of the most prominent forms of ableism today. In order to combat it, we must 
first understand it. This study took one of the first steps by establishing aversive ableism as a 
two-dimensional construct, and reconceptualizing ableism as a spectrum. Next, the hard work 
of disrupting these unconscious processes can begin. Doing so is necessary to end the social 
oppression of disabled people.
Carli Friedman, PhD. is the Director of Research at The Council on Quality and Leadership 
(CQL). She received her PhD in Disability Studies from the University of Illinois of Chicago. 
Her research focuses on ableism, meaningful community inclusion, and quality of life.
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Endnotes
1. This category includes both the concepts of symbolic and modern prejudice. While at one 
time they were considered separate, the significant bulk of the literature now considers them 
the same thing (Henry & Sears, 2008). Thus, it is referred to as symbolic prejudice throughout 
this manuscript for clarity.
2. Son Hing et al. (2008) describe principled conservatives as those who truly value the 
abstract conservative ideas, which causes them to dislike policies that stray from tradition. 
Principled conservatives score high on explicit racial prejudice because "they cherish the 
values confounded with the content of the MRS [modern racism scale]" and low on implicit 
racial prejudice because they discriminate against both racial groups equally implicitly (Son 
Hing et al. 2008, p. 973). However, Son Hing et al. (2008) note "principled conservatism 
might not be a race-neutral ideology; rather racism and conservatism could be linked because 
both are used to legitimize hegemony" (pp. 972-973). 
3. Although there is no standardized overall error rate for removal, 30% was selected because 
it was the most frequent cut-off point found among IAT literature. Of the 20 IAT manuscripts 
found that discussed their exact overall error rates the cut-off points ranged from error rates 
greater than 15% to greater than 40%; the median was 30%, the mode was 35%, and the mean 
was 28.4% (Chen et al., 2011; Cvencek, Greenwald, & Meltzoff, 2011; Cvencek, Meltzoff, & 
Greenwald, 2011; Dionne, Gainforth, O'Malley, & Latimer-Cheung, 2013; Enea-drapeau, 
Carlier, & Huguet, 2012; Greenwald & Farnham, 2000; Huang, Wang, & Shi, 2009; 
Ilavarasu, Rajesh, & Hankey 2014; Karpinski & Hilton 2001; Karpinski, Steinman, & Hilton, 
2005; Ma, Chen, Zhou, & Zhang 2012; Maison, Greenwald, & Bruin 2001; Nosek et al,. 
2007; Nosek, Banaji, & Greenwald 2002; Ratliff & Nosek 2010; Sabin, Marini, & Nosek, 
2012; Teachman, Gapinski, Brownell, Rawlins, & Jeyaramet al., 2003; Thomas, Doyle, & 
Vaugh, 2007).

  
Aversive Ableism: Modern Prejudice Towards Disabled People by Carli Friedman is licensed 
under a Creative Commons Attribution 4.0 International License. Based on a work at 
http://rdsjournal.org/index.php/journal/article/view/811. Permissions beyond the scope of this 
license may be available at https://www.rds.hawaii.edu.
        
Research Article
Parents With and Without Disabilities: Demographics, Material 
Hardship, and Program Participation
Rajan Anthony Sonik, PhD, JD, MPH
Health Equity Research Lab, Cambridge Health Alliance, Harvard Medical School
 Susan L Parish, PhD, MSW
Bouvé College of Health Sciences, Northeastern University
Monika Mitra, PhD, MSW
Lurie Institute of Disability Policy, Heller School for Social Policy and Management, 
Brandeis University
Joanne Nicholson, PhD
Geisel School of Medicine at Dartmouth, Dartmouth-Hitchcock Medical Center
Abstract: To compare demographics, material hardship, and public benefit program 
participation among parents with and without disabilities, we analyzed data from the 2008 
Survey of Income and Program Participation. Households led by parents with disabilities were 
significantly more likely to experience hardships despite also being more likely to receive 
public benefits. Policy recommendations include greater outreach regarding these programs to 
parents with disabilities and more generous benefit levels. 
Keywords: Disability; Parents; Economic Hardship
      People with disabilities represent between 12.6% and 18.7% of the US population 
(Brault, 2012; Kraus, 2015) and face significant economic insecurities throughout the lifespan 
(Ghosh and Parish 2013; Parish et al. 2008; Parish et al. 2010; Parish, Rose and Swaine 2010, 
2010; She & Livermore, 2007; Author et al., 2016a). For example, Peiyun She and Gina 
Livermore (2007) found that having a work-limiting disability for even less than one year is 
associated with increased odds of not meeting all expenses, not making rent or mortgage 
payments, not paying utility bills, not seeking needed medical care, not seeking needed dental 
care, and being food insecure in the United States. Similarly, having a child with a disability 
is associated with an increased likelihood of lacking a telephone, not being able to pay rent, 
postponing medical care, postponing dental care, and being food insecure (Parish et al. 2008; 
Sonik et al. 2016a).
      Notably, these findings persist even when families with disabled household members 
receive public benefits (Sonik et al. 2016a; Sonik, Parish, and Rosenthal 2016b). These 
findings indicate that the benefits provided by current programs may not be fully sufficient to 
meet the complex needs of people with disabilities. This conclusion is supported by evidence 
from programs such as the Supplemental Nutrition Assistance Program, which has been 
shown to partially but incompletely alleviate food insecurity (Gregory, Rabbit, & Ribar, 2013; 
Mabli & Ohls, 2015; National Research Council, 2013; Nord & Golla, 2009; Ratcliff et al., 
2011[1] [RS2] ; Shaefer & Gutierrez, 2013). Families experience sharp increases in food 
insecurity prior to initial receipt of benefits, followed by modest but incomplete reductions in 
food insecurity after benefits are received (Gregory et al., 2013; National Research Council, 
2013). As a result, in cross-sectional analyses, receipt of Supplemental Nutrition Assistance 
Program benefits is counterintuitively associated with greater levels of material hardship, even 
after adjusting for income (e.g., Alaimo, Briefel, Frongillo, & Olson, 1998; Cohen, Ohls, 
Andrews, Ponza, Moreno, Zambrowski, & Cohen, 1999; Jensen, 2002; Ribar & Hamrick, 
2003; Wilde & Nord, 2005; Gregory et al., 2013; National Research Council, 2013). 
Similarly, among low-income families that include children with disabilities, those receiving 
Supplemental Security Income benefits were more likely to experience food insecurity (Rose-
Jacobs et al., 2016[3] [RS4] ). In another study, a subpopulation of families including 
individuals with developmental disabilities had both heightened levels of program 
participation and widespread moderate-but not extreme-forms of material hardships (Sonik 
et al. 2016b).
Disability and Parenthood
      Despite hardships documented among people with disabilities more broadly, parents 
with disabilities have received minimal study in terms of demographic and economic 
descriptions. Social and legal barriers to successful parenthood among people with disabilities 
are, however, well documented. For example, a review of existing child protection laws across 
the 50 states and the District of Columbia found that 37 contained language indicating that 
parental disability is a basis for terminating parental rights (Lightfoot, Hill, & LaLiberte, 
2010). Almost all of these statutes specifically identify mental illness and intellectual and 
developmental disabilities (though often with outmoded language), and several statutes focus 
on physical disabilities as well (Friesen, Nicholson, Kaplan, & Solomon, 2009; Kaplan, 
Kottsieper, Scott, Salzer, & Solomon, 2009; Lightfoot et al., 2010). A comprehensive report 
by the National Council on Disability (2012) found multiple formal and informal challenges 
to parenting for people with disabilities, ranging from a medical provider culture that 
discourages fertility for women with disabilities (including encouragement of sterilization, 
especially among women with psychiatric disabilities), to cultural and statutory biases in the 
family court and child welfare systems against providing parents with disabilities access to the 
same parental rights afforded to parents without disabilities.
      Consequently, parents with disabilities in general have a heightened risk of losing 
custody of their children (National Council on Disability, 2012). Individuals with particularly 
stigmatized disabilities such as mental illness have been reported to experience custody loss at 
even higher rates, with some estimates of removals occurring 80 percent of the time (Joseph, 
Joshi, Lewin, & Abrams, 1999). Moreover, children removed from parents with disabilities, 
as compared to children removed from parents without disabilities, stay in foster care longer 
and receive fewer formal supports for reunification with their parents (Lightfoot & DeZelar, 
2016). Related to this phenomenon, parents with mental illness who lose custody of their 
children have reported confusion with the process and are, at times, even unclear about where 
their children live (Sands, Koppelman, & Solomon, 2004).
      Given the relationship between poverty and interventions by state child welfare 
agencies (Eckenrode, Smith, McCarthy, & Dineen, 2014), poverty and material hardship 
among parents with disabilities are potentially related to the direct challenges to their parental 
rights just noted (i.e., cultural and statutory biases). However, few studies have examined the 
economic well-being of individuals with disabilities, let alone public benefit participation 
among these parents. The most recently reported nationally representative estimates regarding 
parents with disabilities found that 6 percent (4.1 million) of parents co-residing with their 
minor children had disabilities (Kaye, 2012). This study reported that 30 percent of parents 
with disabilities had income below the federal poverty line and 16 percent of these parents 
received Supplemental Security Income benefits, a federal means-tested programs for low-
income, low-asset individuals with work-limiting disabilities (Kaye, 2012). No other 
measures of material hardship-such as food insecurity and unmet expenses for other 
essential items-or of public assistance utilization-such as benefits from the Supplemental 
Nutrition Assistance Program (formerly the Food Stamps Program)-were presented (Kaye, 
2012). Also, comparisons to parents without disabilities were not made in this report.
      Other studies focusing on subsets of the disability community or with smaller samples 
have found high levels of hardship beyond income poverty. For example, Alison Luciano, 
Joanne Nicholson, and Ellen Meara (2014) found that, nationwide, parents with serious 
mental illnesses were almost twice as likely as parents without any mental illness to have 
income below the federal poverty level (30% versus 17% for mothers and 17% versus 9% for 
fathers). In a sample of Supplemental Security Income recipients, parents with mental illness 
were twice as likely as parents with other disabilities to be unable to pay their rent and 76 
percent more likely to experience food insecurity (Sogar, 2016). In addition, qualitative 
studies involving low-income mothers with disabilities reported severe experiences of 
material deprivation, even when receiving benefits from social safety-net programs (Magaña, 
Parish, and Cassiman 2008; Parish, Magaña, and Cassiman 2008). Perhaps relatedly, parents 
with mental illness were more likely to report having fair or poor health when compared to 
their counterparts without mental illness (Luciano, Nicholson, & Meara, 2014). Overall, the 
number of parents with disabilities and their degree of vulnerability indicates that the well-
being of this population is a serious public health concern.
      Broadly, parenthood is a key life event for which people with disabilities lack full 
inclusion. Understanding the economic vulnerabilities in this population may be critical to 
understanding the supports needed to achieve more inclusive policies for parents with 
disabilities.
Research Questions
      The patterns of economic deprivation and program participation observed among the 
general population of people with disabilities suggest that parents with disabilities may face 
similar challenges. If so, these hardships may, in unique ways, interact with and exacerbate 
the social and legal challenges to the rights of parents with disabilities more broadly. 
Therefore, to better understand the material needs of parents with disabilities, we used data 
from the nationally representative Survey of Income and Program Participation to pursue the 
following research questions: (1) how do parents with and without disabilities of varying 
severities compare on individual characteristics?, (2) how do parent households compare on 
measures of material hardships and program participation?, and (3) are there any relationships 
between parental disability status and material hardships?
Methods
Data
      The longitudinal Survey of Income and Program Participation is representative of the 
non-institutionalized population of the United States (US Census Bureau, n.d.). We utilized 
data from wave 6 of the 2008 panel of the survey, which was collected between May and 
August of 2010. In addition to core questions relating to income, demographic information, 
and program participation, wave 6 contained extensive sets of topical module questions 
regarding disability status and material hardships. The detailed information provided in these 
modules allow for differentiation of disabilities into severe and non-severe categories and for 
examination of multiple domains of material hardship (Brault, 2012; Stoddard, 2014).
      The Survey of Income and Program Participation provides several weights that allow 
for estimation of the number of people or households who are represented by each surveyed 
person and household (Westat, 2001). Person-weights can be used to calculate descriptive 
statistics for individual-level variables, such as race and gender. For household-level 
variables, such as the percentage of households experiencing specific material hardships, 
household-weights can be used. For variance estimations, the Survey of Income and Program 
Participation recommends using Fay's modified balanced repeat replication method (Westat, 
2001). To prevent respondents from small geographic areas from being identifiable, the 
Survey of Income and Program Participation alters its primary sample units by combining 
them into larger variance strata and then splitting each stratum into two variance units. Fay's 
method is therefore recommended for variance estimation because it is able to account for 
both halves of the strata that are generated. Resulting variance estimates are nominally 
conservative (Westat, 2001).
Sample
Parent analysis
      We identified co-residing parents with and without disabilities caring for their minor 
children (biological, step, or adopted) using several steps. First, we identified individuals who 
were heads of households or the spouse or partners of heads of households who lived with at 
least one of their minor children (n = 17,578). We limited our sample of parents to those who 
were heads of households or the spouses or partners of heads of households because of the 
additional financial responsibilities assumed by individuals in this role and in order to limit 
data to a maximum of one parent or parenting-pair per household (e.g., if a parent/head of 
household lived with his or her sibling and sibling's child, the sibling would be excluded). 
Next, among the parents identified in the first step, we identified those without disabilities (n 
= 15,636), those with non-severe disabilities (n = 743), and those with severe disabilities (n = 
1,199), using criteria described by the US Census Bureau in its estimates of the prevalence of 
people with disabilities in the United States (Brault, 2012). The US Census Bureau criteria 
identifies disabilities relating to various physical tasks, aspects of communication, activities of 
daily living, instrumental activities of daily living, intellectual and developmental disabilities, 
mental health conditions, and work-related disabilities (Brault, 2012). The exact definition 
involves nearly 100 variables, but in general severe disabilities are identified as those 
involving total functional limitations or leading to a need for assistance from others (Brault, 
2012). These initial two steps were used for person-specific estimates, such as demographic 
information.
Parent-household analysis
      Identifying the category of parenting households involved separate steps, depending 
on whether the identified parent(s) lived (i) without a spouse or partner, (ii) with a spouse or 
partner who was the biologic, step, or adoptive parent of a child in the household (meaning 
they were also a parent in the individual analysis), or (iii) with a partner who was not a parent 
of any kind to any child in the household (meaning they were not a parent in the individual 
analysis) (Figure 1). In the first scenario, a single parent, the disability status of the parent 
(none, non-severe, or severe) was also the status for the household. In the second scenario, in 
which there were two parents, several outcomes were possible: (a) if one parent or both 
parents had a severe disability, the household was assigned severe disability status; (b) if one 
parent had a non-severe disability and the other parent had either a non-severe disability or no 
disability, the household was assigned non-severe disability status; and (c) if neither parent 
had any disability, the household was assigned a status of no disability. Finally, the third 
scenario, a parent living with a nonparent partner, had several possible outcomes as well: (a) if 
the parent had a severe disability, the household was given severe disability status; (b) if the 
parent had a non-severe disability and the nonparent partner had either a non-severe disability 
or no disability, the household was given non-severe disability status; (c) if both the parent 
and the nonparent partner had no disabilities, the household was given a status of no 
disabilities; (d) if the parent had a non-severe disability and the nonparent partner had a severe 
disability, the household was excluded (n = 2); and (e) if the parent had no disability and the 
nonparent partner had any type of disability, the household was excluded (n = 88). We 
excluded households in these latter two situations because it was not clear what, if any, 
caregiving responsibilities the nonparent partners held, making conceivable equally strong 
arguments for these households to fall into different categories. Ultimately, we identified 
8,380 no-disability parent households, 633 non-severe-disability parent households, and 1,116 
severe-disability parent households. This approach yielded three mutually exclusive 
households types, and ensured that there were no duplicated households across categories.

Measures
Dependent variables
      We explored sociodemographic characteristics, economic and material hardship 
prevalence, and public benefits program participation. Individual-level sociodemographic 
factors included, age, gender, race and ethnicity, marital status, health status, and educational 
attainment, and whether or not any of the children in the parent's home had any disabilities. 
As with adult disability, child disability status was also determined based on criteria described 
by Matthew Brault (2012). Household-level economic factors included income, employment 
status, food insecurity-identified through methods developed by the United States 
Department of Agriculture (Nord, 2006), child food insecurity, whether there were any unmet 
expenses or service needs due to income (including expenses deemed essential, needs to see a 
doctor, needs to see a dentist, utility expenses, and rent or mortgage payments), whether the 
telephone or other utility services had been disconnected, whether the family had been evicted 
because of unpaid rent or mortgage payments, and whether the home had any conditions 
problems (including malfunctioning plumbing, infestation with pests such as rats or mice, 
leaking roof or ceiling, broken windows, cracks in walls or ceiling, holes in the floors, or 
exposed electrical wires). Finally, we examined household-level receipt of benefits from 
Supplemental Security Income, the Supplemental Nutrition Assistance Program (both 
generally and among income-eligible families with income below 185% of the federal poverty 
level), Temporary Assistance to Needy Families, and unemployment insurance.
Independent variables
      For each dependent variable we ran two sets of bivariate analyses: (i) comparing non-
disability parents and households to non-severe-disability parents and households, and (ii) 
comparing non-disability parents and households to severe-disability parents and households. 
We generated two dummy variables as the independent variables, one for each of these 
comparisons. For logistic regressions, we used separate dummy variables that were indicators 
of non-severe-disability household status and severe-disability household status.
Covariates
      In logistic regression analyses, we controlled for age, gender, race and ethnicity, 
marital status, health insurance status, health status, income, education, and employment 
status. In addition, given the added vulnerability noted in past studies among households 
including children with disabilities (Parish et al., 2008; Sonik et al,. 2016b), we controlled for 
whether or not any children in the household had a disability. Finally, given evidence that 
families seek public benefits after material hardships arise (Gregory et al., 2013; National 
Research Council, 2013), we did not adjust for public benefit program receipt as these were 
likely temporally external to any potential relationships between parental disability status and 
material hardships. As such, they would be inappropriate to include in cross-sectional models.
Analyses
      Stata (Version 14.0) was used to conduct all statistical calculations. We conducted 
bivariate comparisons on all sociodemographic, economic, and program participation 
variables. Stata utilizes adjusted Wald tests for weighted mean comparisons and corrected 
Pearson's ?2 tests for weighted percentage comparisons, both of which involve F statistics. In 
addition, we conducted weighted multivariate logistic regressions to examine the relationship 
between household parental disability status and selected material hardship factors while 
adjusting for sociodemographic factors.
Results
Parents With and Without Disabilities
      We estimated that 10.3 percent (95% CI: 9.8%, 10.9%) of parents co-residing with 
their minor children had disabilities; 4.0 percent (95% CI: 3.7%, 4.4%) had non-severe 
disabilities and 6.3 percent (95% CI: 5.8%, 6.7%) had severe disabilities (Table 1). Socio-
demographically, the sample of parents with non-severe disabilities had a similar gender and 
racial and ethnic makeup as the parents without disabilities, but these groups differed on all 
other variables (Table 1). Compared to parents without disabilities, parents with non-severe 
disabilities were significantly less likely to have ever married (86% versus 90%, p < 0.001) or 
live with a spouse or partner (79% versus 87%, p < 0.001). In addition, parents with non-
severe disabilities were more than seven times as likely to have fair or poor general health 
than parents without disabilities (23% versus 3%, p <0.001), they were less likely to have a 
high school (85% versus 89%, p < 0.001) or college degree (25% versus 34%, p < 0.001), and 
they were more likely to have children with disabilities (26% versus 11%, p < 0.001) (Table 
1). Parents with severe disabilities experienced similar differences when compared to parents 
without disabilities, though with larger effect sizes (Table 1). In addition, parents with severe 
disabilities were significantly less likely than parents without disabilities to be men (61% 
versus 54%, p<0.001), non-Hispanic white (59% versus 63%, p < 0.001) or Asian (3% versus 
5%, p = 0.01), and they were significantly more likely to be non-Hispanic black (16% versus 
10%, p < 0.001) (Table 1).
Table 1. Parent demographicsa
 Variable
 Parents without 
disabilities
 (n = 15,636)
 Parents with 
non-severe 
disabilities
 (n = 743)
 Fb (for 
comparison to 
parents without 
disabilities)
 Parents with 
severe 
disabilities
 (n = 1,199)
 F (for 
comparison to 
parents without 
disabilities)
% (SE)
 89.7 (0.3)
 4.0 (0.2)
 n/a
 6.3 (0.2)
 n/a
Age (mean), years (SE)
38.8 (0.1)
40.0** (0.4)
7.9
41.5*** (0.3)
67.5
Women, % (SE)
54.2 (0.2)
58.3 (2.0)
3.8
61.5*** (1.3)
25.8
Race/ethnicity, % (SE)





 Non-Hispanic white
63.0 (0.7)
62.1 (2.0)
0.2
58.9* (1.7)
5.5
 Non-Hispanic black
10.4 (0.4)
11.6 (1.4)
0.9
15.9*** (1.2 )
26.4
 Non-Hispanic Asian
4.6 (0.2)
4.0 (0.7)
0.5
3.0* (0.5)
6.4
 Non-Hispanic, other
2.4 (0.2)
2.9 (0.7)
0.6
5.5*** (0.9)
25.0
 Hispanic
19.7 (0.5)
19.1 (1.7)
0.0
16.7* (1.3)
4.0
Family status, % (SE)





 Ever married
90.4 (0.3)
86.3*** (1.3)
14.3
83.9*** (1.2)
35.1
 Divorced
6.5 (0.2)
10.7*** (1.3)
16.2
12.7*** (1.1)
51.4
 Lives with spouse or 
partner
86.6 (0.3)
79.0*** (1.7)
27.6
72.1*** (1.5)
139.9
Health status, % (SE)





 Excellent
33.6 (0.5)
13.0*** (1.2)
138.6
4.9*** (0.8)
271.6
 Very good
40.7 (0.5)
29.0*** (1.9)
32.0
10.6*** (1.0)
354.4
 Good
22.5 (0.5)
34.9*** (1.7)
55.1
27.6*** (1.2)
15.5
 Fair
2.9 (0.2)
18.2*** (1.6)
381.6
36.1*** (1.8)
1,451.6
 Poor
0.2 (0.0)
5.0*** (0.8)
420.1
20.9*** (1.5)
2,850.7
Educational attainment





 High school/GED or more, % 
(SE)
89.3 (0.4)
85.4** (1.4)
9.2
79.8*** (1.4)
71.9
 Bachelor's degree or more, % 
(SE)
33.7 (0.5)
24.6*** (1.9)
20.4
15.2*** (1.1)
163.2
Any children (<18 
years) with disabilities 
in home, % (SE)
11.3 (0.4)
26.1*** (2.0)
99.7
30.4*** (1.7)
264.1
a All values weighted; b For comparisons of weighted means (e.g., income), STATA conducts adjusted Wald 
tests, and for comparisons of weighted percentages (e.g., gender), STATA conducts corrected Pearson's ?2 
tests. Both produce F statistics; * p<0.05; ** p<0.01; ***p<0.001.

Parent Households With and Without Disabilities
      Among households that included parents co-residing with their minor children, we 
estimated that 16.2 percent (95% CI: 15.4%, 17.0%) met our definition of a parent-disability 
household; 6.0 percent (95% CI: 5.5%, 6.7%) were non-severe-disability parent households, 
and 10.2 percent (95% CI: 9.5%, 10.9%) were severe-disability parent households (Table 2). 
Economically, non-severe-disability parent households had significantly less income on 
average than non-disability parent households ($64,762 versus $73,874, p < 0.001) and were 
more likely to have income below 100 percent of the federal poverty level (22% versus 18%, 
p = 0.04) (Table 2). Non-severe-disability parent households were also approximately twice as 
likely to experience any measure of food insecurity (any food insecurity: 23% versus 11%, p 
< 0.001; very low food insecurity: 8% versus 3%, p < 0.001; child food insecurity: 8% versus 
5%, p < 0.001) (Table 2). Non-severe-disability parent households were also two to three 
times as likely than non-disability parent households to be unable to pay for various critical 
expenses (such as rent or mortgage payments: 20% versus 10%, p < 0.001) and to experience 
problems with their housing conditions (such as having infestations with rats or mice: 17% 
versus 7%, p < 0.001) (Table 2). These households were also significantly more likely to 
receive Supplemental Security Income and Supplemental Nutrition Assistance Program 
benefits (Table 2). Severe-disability parent households also had significantly less income than 
non-disability parent households (e.g., their mean income was $46,300, p < 0.001), in addition 
to facing elevated rates of unmet expenses and poor housing conditions (Table 2). Effect sizes 
were again larger for severe-disability parent households on income, public benefit 
participation, and most material hardship measures.
       
Table 2. Material hardship and program participation among households of parents with and 
without disabilitiesa
 Variable
 Parents 
without 
disabilities
 (n = 8,380)
 Parents with 
non-severe 
disabilities
 (n = 633)
 Fb (for 
comparison to 
parents 
without 
disabilities)
 Parents with 
severe 
disabilities
 (n = 1,116)
 F (for 
comparison to 
parents 
without 
disabilities)
% (SE)
 83.8 (0.4)
 6.0 (0.3)
 n/a
 10.2 (0.3)
 n/a
Mean Income, $ (SE)
 73,264 (931)
 64,394*** 
(2,341)
 14.1
 46,300*** 
(1,638)
 177.3
FPLc category, % (SE)





 < 100% FPL
18.2 (0.4)
21.6* (1.7)
4.2
35.2 *** 
(1.8)
98.9
 100-199% FPL
20.5 (0.5)
22.4 (1.7)
1.2
28.2*** 
(1.4)
34.0
 200-299% FPL
17.7 (0.5)
19.3 (1.8)
0.7
16.7 (1.2)
0.5
 = 300% FPL
43.5 (0.6)
36.6*** 
(1.9)
12.7
20.0*** 
(1.3)
178.4
Employed and working % (SE)
80.8 (0.5)
74.9** (1.9)
10.2
35.1*** 
(1.6)
873.6
Health insurance status, % (SE)





 Uninsured
20.0 (0.5)
18.4 (1.6)
0.9
20.1 (1.4)
0.0
 Medicaid and/or Medicare
10.0 (0.4)
16.9*** 
(1.6)
24.4
38.5*** 
(1.7)
505.0
 Any private
69.9 (0.6)
64.8** (1.9)
7.8
41.5*** 
(1.8)
204.1
Food security, % (SE)





 Low or very low food security
11.3 (0.4)
23.0*** 
(1.9)
66.4
29.3*** 
(1.5)
196.4
 Very low food security
3.4 (0.3)
7.9*** (1.1)
31.4
13.3 (1.1)
166.1
 Child food insecurity
4.9 (0.3)
8.2*** (1.1)
12.3
11.2*** 
(1.1)
47.9
Unmet expenses/needs, % (SE)





 Unmet essential expenses
18.6 (0.5)
34.0*** 
(1.9)
79.8
43.3*** 
(1.5)
347.3
 Unmet need to see doctor 
7.0 (0.3)
14.6*** 
(1.6)
39.4
186.6*** 
(1.3)
164.9
 Unmet need to see dentist
8.9 (0.4)
18.4*** 
(1.6)
58.9
23.1*** 
(1.3)
209.2
 Unmet utility expenses
12.8 (0.4)
24.3*** 
(1.7)
63.0
31.4*** 
(1.6)
215.8
 Utilities shut off
2.2 (0.2)
4.5*** (0.9)
11.6
6.8*** (0.8)
66.8
 Telephone disconnected
4.6 (0.3)
9.3*** (1.0)
29.6
13.1*** 
(1.3)
74.6
Housing security, % (SE)





 Unpaid housing payments 
10.4 (0.4)
20.3*** 
(1.6)
50.2
22.5*** 
(1.3)
115.8
 Evicted from home
0.5 (0.1)
1.2* (0.4)
4.9
0.9 (0.3)
2.0
Housing conditions, % (SE)





 Plumbing not working
1.5 (0.2)
4.0*** (0.8)
20.2
1.5*** (0.2)
32.9
 Pests (rats, mice, etc.)
7.1 (0.3)
16.6*** 
(1.6)
67.2
12.5*** 
(1.1)
38.2
 Leaking roof or ceiling
4.0 (0.2)
8.2*** (1.1)
23.1
8.8*** (0.8)
60.6
 Broken windows
2.8 (0.2)
6.0*** (1.0)
22.8
7.8*** (0.9)
61.9
 Cracks in walls or ceiling
2.3 (0.2)
7.3*** (0.9)
61.5
5.8*** (0.6)
52.3
 Holes in floor
0.5 (0.1)
1.6** (0.6)
11.3
1.6*** (0.4)
18.7
 Exposed electrical wires
0.5 (0.1)
1.0 (0.4)
2.5
2.5*** (0.5)
40.8
Public benefitsd, % (SE)





 SSI
2.2 (0.2)
5.2*** (1.1)
16..9
17.9*** 
(1.2)
549.3
 SNAP
15.8 (0.5)
23.2*** 
(1.7)
24.0
40.8*** 
(1.7)
277.9
 SNAP (if < 185%FPL)e
39.0 (0.9)
48.3** (3.2)
8.2
60.4*** 
(1.9)
91.8
 TANF
1.9 (0.1)
2.6 (0.7)
1.1
8.3*** (1.0)
140.2
 Unemployment
6.5 (0.3)
6.4 (1.1)
0.0
9.9*** (0.9)
16.4
a All values weighted and at household level; b For comparisons of weighted means, STATA conducts 
adjusted Wald tests, and for comparisons of weighted percentages, STATA conducts corrected Pearson's 
?2 tests. Both produce F statistics; c FPL: Federal Poverty Level d SSI: Supplemental Security Income; 
SNAP: Supplemental Nutrition Assistance Program; TANF: Temporary Assistance to Needy Families; e 
Those below 185% FPL are income eligible for SNAP; * p<0.05; ** p<0.01; ***p<0.001.

Relationships between parental disability status and material and housing hardships
      Table 3 and Table 4 present the results of logistic regressions for selected material 
hardship and housing hardships, respectively. After adjusting for various sociodemographic 
factors, non-severe and severe-disability household status was significantly associated with 
each hardship variable except for being evicted. Evictions appeared to be a relatively rare 
event (0.5% for non-disability households, 1.2% for non-severe-disability households, and 
0.9% for severe-disability households). Income was highly associated with all tested hardship 
variables (Table 3 and Table 4). Counterintuitively, employment status was positively 
associated with several of the tested hardships, including having an unmet need to see a doctor 
(adjusted OR = 1.37 [95% CI 1.12, 1.67]), having utility services terminated (adjusted OR = 
1.71 [95% CI 1.22, 2.39), and having unpaid housing rent or mortgage payments (adjusted 
OR = 1.29 [95% CI 1.08, 1.54]) (Table 3 and Table 4). Finally, the household's child 
disability status was associated with all outcomes except for child food insecurity and 
evictions (Table 3 and Table 4).


 Table 3. Associations between parent disability status and selected material hardships, 
adjusting for controlsa

Child food 
insecurity
Unmet need to 
see doctor
Unmet need to 
see dentist
Utilities (gas, 
electricity, or oil) 
shut off
Household parent 
disability statusb




Non-severe parent 
disability
1.5* (1.09, 2.07)
1.97*** (1.46, 
2.66)
1.99*** (1.56, 
2.53)
1.64* (1, 2.68)
Severe parent 
disability
1.68** (1.21, 
2.34)
2.21*** (1.74, 
2.81)
2.07*** (1.63, 
2.65)
2.14** (1.37, 
3.33)
At least one child with 
disability
1.2 (0.91, 1.59)
1.5*** (1.26, 
1.79)
1.41*** (1.2, 
1.65)
1.89*** (1.37, 
2.59)
FPLc




< 100% FPL
3.38*** (2.4, 
4.75)
2.19*** (1.65, 
2.91)
2.25*** (1.73, 
2.92)
2.89*** (1.64, 
5.1)
100-199% FPL
2.9*** (2.07, 
4.06)
1.92*** (1.42, 
2.6)
2.33*** (1.79, 
3.02)
1.68 (0.99, 2.85)
200-299% FPL
1.86** (1.25, 
2.77)
1.81*** (1.35, 
2.44)
2.08*** (1.62, 
2.67)
1.62 (0.99, 2.64)
Employed and 
working
1.16 (0.93, 1.44)
1.37** (1.12, 
1.67)
1.15 (0.94, 1.39)
1.71** (1.22, 
2.39)
a Weighted logistic regressions were used; odds ratios (95% confidence interval) reported; if two parents 
were both associated with a household type, the value for the parent head of household was used (see 
Figure 1); only select covariates are presented (the other covariates were age, gender, race/ethnicity, 
divorced status, health status, health insurance status, and educational attainment); b Reference: no parent 
disability; c FPL: federal poverty level; reference: = 300% FPL; * p<0.05; ** p<0.01; ***p<0.001.

       
Table 4. Associations between parent disability status and selected housing hardships, 
adjusting for controlsa

Unpaid housing 
payments
Evicted from 
home
Plumbing not 
working
Pests (rats, mice, 
etc.)
Household parent 
disability statusb




Non-severe parent 
disability
1.86*** (1.46, 
2.36)
2.05 (0.93, 4.48)
2.3** (1.38, 3.83)
2.27*** (1.78, 
2.89)
Severe parent 
disability
1.63*** (1.27, 
2.08)
1.04 (0.4, 2.74)
1.84* (1.07, 3.18)
1.34* (1.01, 1.77)
At least one child 
with disability
1.46*** (1.21, 
1.77)
1.26 (0.64, 2.51)
1.53* (1.08, 2.16)
1.82*** (1.51, 
2.19)
FPLd




< 100% FPL
3.27*** (2.53, 
4.23)
9.38*** (3.23, 
27.23)
3.29*** (1.9, 
5.71)
1.47** (1.16, 
1.87)
100-199% FPL
2.43*** (1.99, 
2.96)
5.55** (1.96, 
15.74)
1.87 (1, 3.52)
1.58*** (1.29, 
1.93)
200-299% FPL
1.6*** (1.27, 
2.02)
3.12 (0.76, 12.82)
1.53 (0.83, 2.81)
1.15 (0.91, 1.45)
Employed and 
working
1.29** (1.08, 
1.54)
1 (0.52, 1.91)
1.13 (0.78, 1.64)
0.91 (0.73, 1.12)
a Weighted logistic regressions were used; odds ratios (95% confidence interval) reported; if two 
parents were both associated with a household type, the value for the parent head of household was used 
(see Figure 1); only select covariates are presented (the other covariates were age, gender, 
race/ethnicity, divorced status, health status, health insurance status, and educational attainment); b 
Reference: no parent disability; c FPL: federal poverty level; reference: = 300% FPL; * p<0.05; ** 
p<0.01; ***p<0.001.

Discussion
      We present new estimates of the sociodemographic characteristics, material hardship 
experiences, and level of public benefit program participation among parents with and without 
disabilities of differing severities and their households. Our estimates for parents with 
disabilities differ somewhat from those presented by H.S. Kaye (2012). For example, we 
estimate that 82 percent and 19 percent of parents with disabilities had high school and 
college degrees, respectively, whereas Kaye (2012) reported these figures to be 77 percent and 
13 percent. We also estimated that 10 percent of parents had disabilities, compared to the 6 
percent reported by Kaye (2012). One potential explanation for these differences is that 
Kaye's estimates were derived from analyses of the American Community Survey, which 
uses a different definition of disabilities than the Survey of Income and Program Participation 
(Stoddard, 2014). The former defines disability as having serious difficulties in one or more of 
six areas (hearing, vision, cognitive function, ambulation, self-care, or independent living) 
(Stoddard, 2014), whereas the latter uses a more complex algorithm to differentiate 
disabilities into broader domains (communicative, mental, and physical) and includes both 
what it considers "severe" and "non-severe" functional impairments (Brault, 2012).
      Beyond these initial figures, we found that the households of parents with 
disabilities-either non-severe or severe-experience poorer health and poorer outcomes 
regarding a host of economic and material hardships when compared to parents without 
disabilities. This was true even while controlling for many possible confounders. Moreover, 
given the correlations found between income and disability status (Table 2) and the 
relationship between income and economic outcomes (Table 3 and Table 4), income may 
have captured a significant portion of the variation in the outcome variables originating from 
disability status.
      Also, we found this trend of worse outcomes to persist for the subset of parents with 
severe disabilities despite the relatively elevated use of public benefits in their households. 
This trend is consistent with previous findings suggesting that public benefit programs may 
alleviate hardship, but such benefits do not eliminate hardship (Shaefer & Gutierrez, 2013; 
Sonik et al., 2016b). We found this to be true for parents with non-severe disabilities as well, 
despite their being a relatively closer match to parents without disabilities in race, ethnicity, 
employment status, poverty status, and public benefit program receipt. For example, despite 
the fact that the households of parents with non-severe disabilities experienced below-poverty 
income only about 20 percent more frequently than the households of parents without 
disabilities, they experienced twice the prevalence of food insecurity. This indicates that 
mechanisms beyond traditionally examined socioeconomic factors are driving at least some of 
the material hardship differences among these families. Similarly, our finding that being 
employed was positively associated with certain hardships is unexpected. It is possible that, 
once controlling for income and health insurance status, being employed versus not implies a 
greater risk for falling into a gap between eligibility for public benefit programs and having 
sufficient earned income to avoid hardship.
      Given the high direct and indirect health care costs experienced by families including 
members with disabilities (Mitra, Findley, & Sambamoorthi, 2009; Parish, Shattuck, & Rose, 
2009), one potential mechanism leading parents with disabilities to experience excess 
economic difficulties may be increased health care costs that drain otherwise similar 
resources. Our findings that households led by parents with disabilities are more likely than 
those led by parents without disabilities to have unmet medical and dental needs supports this 
theory. An important caveat to this argument, though, is that data for this study were collected 
in 2010, before the Affordable Care Act fully came into effect. Future studies should examine 
whether parents with disabilities-and in particular those with non-severe disabilities-have 
experienced any reduction in their health care costs in recent years and what effect this may 
have had on the prevalence of material hardships among these families.
Limitations
      The Survey of Income and Program Participation relies on self-reported data. Given 
biases associated with disability status, and in particular parental disability status (National 
Council on Disability, 2012), underreporting potentially limited our ability to examine the full 
population of parents with disabilities. However, because the Survey of Income and Program 
Participation assesses disability through questions about activity- and function-specific 
impairments rather than potentially charged labels (Brault, 2012), effects from underreporting 
are likely to be minimal. In addition, despite moderate to large sample sizes, our analyses may 
still have lacked adequate power to detect differences between groups in their experiences of 
low frequency events such as evictions. Finally, we did not explore the potential effects of 
having one versus two parents with disabilities. Doing so would make identifying appropriate 
comparisons to single parent households and households with parents without disabilities 
difficult, and the sample size was insufficient to examine this degree of granularity.
Policy implications
      Several public benefit programs are either explicitly provided to people with 
disabilities, such as the Supplemental Security Income program, or have more flexible 
program rules for recipients with disabilities, such as the Supplemental Nutrition Assistance 
Program (SNAP, 2013). Any additional assistance provided by these programs appears 
insufficient to meet the needs of households that include parents with disabilities. Based on 
our findings, both uptake levels and the amount of benefits provided appear to be at issue. 
More than 60 percent of income-eligible households led by parents with severe disabilities 
receive Supplemental Nutrition Assistance Program benefits. Although uptake for this group 
was one and half times greater than it was for households led by parents without disabilities, 
they still experienced two to three times the level of very low food security and child food 
insecurity. These two factors may be related, as families needing assistance may be less likely 
to seek benefits that they perceive will only partially alleviate the problem they are trying to 
solve. A combination of greater outreach to parents with disabilities and more generous 
benefit levels may be warranted.
      Affordable and safe housing policies also appear not to meet the needs of parents with 
disabilities. We found that parents with disabilities were significantly more likely to 
experience a host of housing condition problems, such as pest infestations, that are likely 
detrimental to health and well-being. An associated problem was that one in five of these 
families-twice the rate for families without parents with disabilities-had unpaid rent or 
mortgage payments, signifying a likely lack of mobility or options for ensuring improved 
living conditions. Given the already-vulnerable health status of parents with disabilities, 
unstable and unsafe living conditions are likely to increase health problems and, ultimately, 
health care utilization and costs. For these reasons, more robust sustainable housing policies 
are needed and should contain special considerations for families that include people with 
disabilities.
      Finally, the excess material and housing hardships experienced by parents with 
disabilities may interact with already-biased social and legal systems with regard to child 
custody. For example, court systems following inherently biased family law policies are 
unlikely to see the harsher living conditions faced by parents with disabilities as anything but 
confirmation of beliefs that question the appropriateness of parenting with disabilities from 
the start. Consequently, efforts to reform family policies to make them more accommodating 
to parents with disability will likely need to be made in concert with efforts to alleviate the 
hardships experienced by these families if they are to be successful.
Rajan Anthony Sonik, Health Equity Research Lab, Cambridge Health Alliance, Harvard 
Medical School
Susan L Parish, Bouvé College of Health Sciences, Northeastern University
Monika Mitra, Lurie Institute of Disability Policy, Heller School for Social Policy and 
Management, Brandeis University
Joanne Nicholson, Geisel School of Medicine at Dartmouth, Dartmouth-Hitchcock Medical 
Center
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Parents With and Without Disabilities: Demographics, Material Hardship, and Program 
Participation by Rajan Anthony Sonik, Susan L Parish, Monika Mitra, & Joanne Nicholson is 
licensed under a Creative Commons Attribution 4.0 International License. Based on a work at 
http://rdsjournal.org/index.php/journal/article/view/822. Permissions beyond the scope of this 
license may be available at https://www.rds.hawaii.edu.

        
Creative Works
On Dance and Aging: An Interview with Berlin-Based Researcher-
Dancer Susanne Martin
(with RDS Multimedia and Creative Works Editor, Raphael Raphael)
Raphael Raphael, PhD
RDS Associate Editor of Creative Works and Multimedia
University of Hawaii at Manoa
Abstract: In this interview with Susanne Martin, she considers ways in which she combines 
her artistic practice as dancer with her theoretical research to better understand aging and 
dance.
Editors' note: This interview was created in February and March of 2018 via email. I was 
first exposed to the work of Susanne Martin in an artist panel organized by Jean Marie 
Casbarian last summer (2017) during a residency I attended with Transart Institute at 
Uferstudios in Berlin. I was inspired by Susanne's unique approach to her research on aging 
and dance. She leverages both the living experience of performing in a body and more 
traditional forms of research. Her unique path as researcher/artist surely invites us all to 
think about different ways in which we might tap our whole experiences in our work and 
research. Where relevant, her responses here occasionally include links to experience some of 
her research/performance firsthand. -RR
RR: How can dance contribute to our knowledge about the experience of aging?
SM: Contemporary dance has the potential to question or dismantle stereotypical body and 
age-related values and images that are not only a part of dance but also our everyday culture 
(Albright 1997, Lipscomb and Marshall 2010, Ross, 2007).
I have been interested in images and narratives of age(ing) as a choreographer since 2003. I 
was thirty-five then. Since then I have created and performed several characters, male and 
female, dance amateurs and dance professionals between fifty and seventy-five years of age, 
as well as less character-based deconstructions of age(ing). One could say that this was a quite 
young age for making age(ing) the major topic and inspiration for one's artistic work. I argue, 
however, that a premature age(ing) consciousness and concern is rather symptomatic for the 
dance world's relationship to age(ing). Imagined as well as actually experienced age limits 
and exclusions start already in childhood, especially in places where the competition and 
selection-oriented tradition of ballet, with its strict physical norms, has a strong influence on 
the educational and professional structures of dance (Schwaiger, 2012; Wainwright and 
Turner, 2006).
Dance as an art form, as a profession, as a field of knowledge and a field with very particular 
and specialized bodily practices, has a peculiar relationship to age(ing). Western theatre dance 
has often focused on youthful physicality and, as such, takes part in an unquestioned 
marginalization of older bodies. However, dance, and specifically contemporary dance, is also 
a site for questioning and inventing new ways of experiencing and presenting human bodies in 
movement (Benjamin, 2010; Brayshaw and Witts, 2014; Hoghe, 2005). Therefore, 
contemporary dance also has the potential to question or dismantle stereotypical body and 
age-related values and images that are not only a part of dance but also our everyday culture 
(Ann Cooper Albright 1997, Valerie Lipscomb and Leni Marshall 2010, Janice Ross 2007). 
The ways in which this potential can be realized, and indeed, is already being realized is the 
subject of my PhD thesis Dancing Age(ing) that I published in 2017.
Dance is known to be a field with very short career trajectories. Research on the work realities 
of professional dancers shows that "although [dancers] thought they could continue until their 
late thirties, on average they actually stopped dancing professionally in their early to mid-
thirties" (Baumol, Jeffri and Throsby 2004, p. 4). Dancing Age(ing), however, reveals that the 
idea of a natural decline of ability does not hold as reason for the traditionally short career of 
performing dancers in Western artistic dance. I argue that the dominant understanding of 
age(ing) in the dance profession naturalizes a supposed youthfulness and reiterates an 
oversimplified "progress-peak-decline" narrative that glosses over underlying issues of 
debilitating power structures and the problems of a generally underfinanced professional field. 
Therefore, in the sense of being confronted with ageist norms and often being involved in 
"process[es] of implicit aging self-stereotypes" (Levy and Banaji, 2002, p. 62) since 
childhood, I argue dance artists to be experts of social or cultural age(ing) (Woodward, 2006) 
already by early midlife.
To bring it back to my personal development: age and questions of being either too young or 
(more often) of being too old have been an issue in my dance life probably since my first 
dance classes at the age of six. At the age of thirty-five, when many dancers leave the 
professional field, I started to engage with age(ing) questions artistically. Then, at the age of 
forty-two I embarked on the adventurous trip of doing a PhD research in dance on 
"Rethinking Age(ing) in and through Improvisation Practice and Performance," so the subtitle 
of my thesis. [It's important] that I did not enter a PhD program as a way out of the dance 
profession. I wanted to continue being a performer. I decided for academic research because I 
realized that it is possible by now to conduct PhD research as a practicing artist and with a 
focus on the artistic methods and practices I developed as dance artist. What is called a 
practice as research methodology in the UK (Nelson, 2013) and artistic research in continental 
Europe (CARPA 1 2009) allowed me to clarify and deepen my ongoing enquiry into 
questions of age(ing) while also continuing to clarify and deepen my artistic practice of 
improvisation and performance making. On the one hand, I researched the working strategies 
of improvisation experts (including myself) that support them to make dance improvisation 
their life-long artistic practice. On the other hand, I identified specific performance strategies 
in current dance making that offer an audience images and narratives of age(ing), which divert 
from stereotypical youth/age dichotomies. I identified performance works that do not repeat 
the hierarchical contrasting of strength versus weakness, fresh potential versus tiring 
stagnation, talented or rampant youth versus either demented or wise old aged. Furthermore, 
through the two solo performances I created as artistic outcomes of my research (The 
Fountain of Youth and The Fountain of Age), I developed myself some specific deconstructive 
strategies to stage age(ing) in ways that critically question and complicate dominant concepts 
and representations of age(ing). (See excerpts of the performances here: 
https://vimeo.com/130871033; https://vimeo.com/142264906)
RR: What can dancing do that writing cannot?
SM: Dance as a stage art form can show us bodies, movements, and physical relationships 
that remind us of the actual uniqueness, quirkiness, and tenderness of having and being a 
body. Dance reminds us of how precarious and in process of constant change we are as we go 
through life, through a day, or from one movement to another. Writing can do that as well, I 
am doing it right now. However, doing or watching dance activates other receptive channels 
and allows for other kinds of experiential moments. I have always loved the doing of dance; 
my pleasure in watching dance is still growing, as well as my satisfaction in reading and 
writing about it.
RR: What is the role of improvisation in your practice and how does it connect to your 
understanding of aging?
SM: I define my own dancing and performance-making as improvisation-based, because for 
me improvisation has always been a major reference point, a training focus, and an 
intellectual stimulation. It is also at the heart of my teaching. At the beginning of my research 
on age(ing) there was the obvious observation that many of the renowned improvisation 
focused dance artists keep developing their practice far beyond their forties and even fifties 
and sixties (see for example Anna Halprin performing on her ninety-fifth birthday: 
https://www.annahalprin.org/recentnews). The apparent age-friendliness of improvisation led 
me to dig deeper and ask what it is that makes this practice age-friendly? From interviews and 
participant observations with improvisers aged between forty-six and sixty-three I filtered a 
range of shared strategies through which they support their life-long dance practice. On a 
theoretical level this led me to try to articulate the nomadic subjectivities (Braidotti, 1994) 
that come to the fore when movement artists continue to engage with the claim of 
improvisation, namely to work creatively with what is present here and now throughout the 
changes of the body and the changes of life. In Dancing Age(ing) I, therefore, argue that the 
practice of improvisation offers an implicitly critical position to the traditional youth-
orientation of Western dance and to the ageist undercurrents that impact contemporary culture 
in general.
RR: How would you describe your current practice?
SM: I am a dancer who choreographs, I am a choreographer who improvises, I am an 
improviser who researches, I am a researcher who enquires age(ing) from the perspective and 
with the methods I developed as a dancer. During the PhD research I focused my artistic 
practice quite strictly on soloing. Since I completed my PhD and the book, I could finally 
open myself again to a range of artistic collaborations. I am involved in a variety of 
performance projects with improvisers from the fields of dance and music. I co-
choreographed a piece for eight young semi-professional performers (Von der Schönheit und 
Seltsamkeit des Anlehnens) with my colleague Eliane Hutmacher. After years of being 
exclusively interested in people of at least my age and older this was an exciting excursion 
into foreign territory. Besides all this, I am working on the format of danced lectures, which 
means to present my research on age(ing) through a mix of speaking and dancing. In other 
words, at each academic conference I spend at least half of my presentation time dancing. I 
use my live, always age(ing), always precarious body to create an experiential moment for my 
audience. I have danced already in university corridors and around enormous desks in tiny 
lecture rooms. How to make such a danced lecture an intellectually satisfying and 
experientially relevant moment for my academic colleagues is probably the most exciting 
challenge I gave myself lately. (See a recording of a danced lecture: 
https://vimeo.com/album/3608339/video/242220635)
RR: Are there particular works by others that inspire your practice?
SM: I am still inspired by the improvisers who informed Dancing Age(ing), Ray Chung, 
Rosalind Crisp, Katarina Eriksson, Julyen Hamilton, Andrew Morrish, and Kirstie Simson. 
They are my colleagues, friends, and teachers. They keep finding unique ways to continue 
their particular artistic practices, to stay inspired, to trust change, and to play with what is 
available to them at each moment.
RR: What are you most excited about now in your practice?
SM: There is a strong sense of new beginnings, which I enjoy. I will teach a contact 
improvisation workshop in Ukraine soon. I am excited about teaching at the moment and I 
have never been to the Ukraine, so that is wonderful. And I am just about to start a post-
doctoral research on improvisation and embodied knowledge. This will be my next very 
exciting journey into and through a continuously changing here and now.
Susanne Martin, PhD is a Berlin-based artist and researcher in the field of contemporary 
dance and performance. She works internationally as soloist and in collaborative settings. Her 
artistic practice and research focuses on improvisation, contact improvisation, narrations of 
the aging body, humor and irony in dance, artistic research methods, and improvisation-based 
approaches to learning, knowledge production and knowledge dissemination. Her book 
Dancing Age(ing): Rethinking Age(ing) in and through Improvisation Practice and 
Performance has been published by transcript in 2017. www.susannemartin.de
References
Albright, A. C. (1997). Choreographing difference: The body and identity in contemporary 
dance. Middletown: Wesleyan University Press.
Baumol, J. W., Jeffri, J., & Throsby, D. (2004). Making changes: Facilitating the transition of 
dancers to post-performance careers. Research Project. [online]. Available from: 
http://www.cpanda.org/data/a00191/changes.pdf [Accessed 2 January 2013].
Benjamin, A. (2010). Cabbages and kings: Disability, dance, and some timely considerations. 
In A. Carter & J. O'Shea (Eds.) The Routledge Dance Studies Reader. London: 
Routledge. pp. 111-121.
Brayshaw, T., & Witts, N. (2014). The Twentieth-century performance reader. Third Edition. 
Abingdon: Routledge.
Braidotti, R. (1994). Nomadic subjects: Embodiment and sexual difference in contemporary 
feminist theory. New York: Columbia University Press.
CARPA 1. (2010). How does artistic research change us? Proceedings of a conference, 
Performing Arts Research Centre, Theatre Academy Helsinki 2009. [online]. 
Available from: 
http://www.uniarts.fi/sites/default/files/CARPA_1_proceedings%20%282%29.pdf 
[Accessed 7 March 2018].
Hoghe, R. (2005). Den körper in den kampf werfen. In G. Klein & W. Sting (Eds.) 
Performance: Positionen zur Zeitgenössischen Szenischen Kunst. Bielefeld: 
Transcript. pp. 51-57.
Levy, B. R., & Banaji, M. R. (2002). Implicit ageism. In T. D. Nelson (Ed.) Ageism: 
Stereotyping and Prejudice against Older Persons. Cambridge: MIT Press. pp. 49-75.
Lipscomb, V. B., & Marshall, L. (eds.). Staging age: The performance of age in theatre, 
dance, and film. New York: Palgrave Macmillan. pp. 11-26.
Nelson, R. (Ed.) (2013). Practice as research in the arts: Principles, protocols, pedagogies, 
resistances. Basingstoke: Palgrave Macmillan.
Ross, J. (2007). Anna Halprin: Experience as dance. Berkley: University of California Press.
Schwaiger, E. (2012). Ageing, gender, embodiment and dance: Finding a balance. New York: 
Palgrave Macmillan.
Wainwright, S., & Turner, B. S. (2006a) 'Just crumbling to bits'? An exploration of the body, 
aging, injury and career in classical ballet Dancers. Sociology, 40(2), pp. 237-255.
Woodward, K. (2006). Performing age, performing gender. Feminist Formations, 18(1), pp. 
162-189.
  
On Dance and Aging: An Interview with Berlin-Based Researcher-Dancer Susanne Martin by 
Raphael Raphael is licensed under a Creative Commons Attribution 4.0 International 
License. Based on a work at http://rdsjournal.org/index.php/journal/article/view/867. 
Permissions beyond the scope of this license may be available at https://www.rds.hawaii.edu.
 
       
Creative Works
Stories Our Bodies Tell: The Phenomenology of Anecdotes, Comings Out, 
and Embodied Autoethnographies
Slava Greenberg, PhD Candidate
Tel Aviv University
Abstract: The essay seeks to explore body-focused phenomenological writing in disability 
studies and film theory throughout publicly shared anecdotes, coming-out narratives, and 
embodied autoethnographies. Through the author's own bodily experiences in academia, 
particularly writing, attending conferences, and teaching, Greenberg bridges the gaps between 
the disciplines through an embodied autoethnographic phenomenological methodology 
inspired by film scholar Vivian Sobchack.
Introduction
      In this essay, I explore body-focused phenomenological writing in disability studies 
and film theory, through publicly shared anecdotes, coming-out narratives1, and embodied 
autoethnographies. Through my own experiences in academia, particularly in writing, 
attending conferences, and teaching, I explore the collaborative contribution of two 
disciplines, disability and film studies, to the articulation of the corporeal being in the world. 
In the following two sections, I carry on the important work of introducing film and disability 
scholarship to each other, through a 'coming out' methodology. As opposed to 'inspiration 
porn', meant to motivate temporarily able-bodied audiences, embodied 'coming out' 
narratives offer transformative responses and engagements. I argue that these experiences of 
the body inter-subjectively touch other bodies beyond cognitive perception, in other words, 
our bodies communicate with other bodies beyond our awareness. My intention is to gather 
these scholars around my writing table, while respecting and regarding their own bodily 
intentionality towards their own desks and chairs.
      Sara Ahmed's Queer Phenomenology (2006) is resting on my too small desk next to 
my laptop. The image on its cover, a wooden desk and chair superimposed on a blue sky, is 
prompting me to write these words. Throughout the book, Ahmed addresses her writing desk 
as well as those used by other philosophers. Ahmed's desk is experienced through her 
gendered and socialized body:
"It is here [the writing table] that I will gather my thoughts. It is here that I will write, 
and even write about writing. This book is written on different writing tables, which 
orient me in different ways or which come to "matter" as effects of different 
orientations. On the tables, different objects gather. Making a place feel home, or 
becoming at home in a space, is for me about being at my table. I think fondly of 
Virginia Woolf's A Room of One's Own. How important it is, especially for women, to 
claim that space, to take up that space through what one does with one's body. And so 
when I am at my table, I am also claiming that space, I am becoming a writer by 
taking up that space" (p. 11).
      Like Holden Caulfield in Catcher in the Rye, I, too, think about the authors of my 
favorite academic and fiction books; unlike Caulfield, however, I do not necessarily seek their 
'real life' friendship. Rather, I imagine them sitting at their desks writing the words I am now 
reading. Specifically, I think about them orienting towards their chairs. Sometimes, when 
given enough clues, I can even sense them stretching their bones or stroking their lower back, 
like I do. 
      The politics of feminist and the queer practice of inserting oneself into a narrative was 
eloquently phrased by disability rights activists in the slogan: "Nothing about us without us." 
First person narratives, anecdotes, and 'coming out' stories have long been popularized by 
literature and film, yet have only recently been accepted in academia, particularly by the 
discipline of anthropology, as autoethnographies. Feminist (Averett, 2009; Boylorn, 2013; 
Ettore, 2017; Griffin, 2012) and queer (Adams & Holman Jones, 2008, 2011) anthropologists 
claimed that multiple perspectives subvert the idea of a unified 'truth', and advocated for self-
examination, due to its potential to describe social contexts from the margins. The 
vulnerability of the speaker/writer's body, which is usually neglected in academia, is brought 
forth in various forms when exposing oneself to readers, conference participants, students, and 
colleagues. Whether the motivation is to critique, disrupt, reclaim, or rethink social orders, the 
common phenomenological effect of such writings is to transcend embodied vulnerability 
through intersubjectivity.
      During the past decade, in which I have been engaged in film studies and disability 
studies, I encountered various uses of personal stories, anecdotes, and memories incorporated 
into research. The relative acceptance of subjective experiences as evidence in an academic 
study is more natural to disability studies than to film studies, arts and humanities, excluding 
some philosophical movements, and primarily phenomenology. Disability studies are rooted 
both in the social sciences and in the disability rights movement, which, I argue take personal 
experiences more seriously than do humanities and arts scholars. Disability studies scholars 
positioned in English and Literature departments, in particular, have long been familiar with 
the transformative powers of autobiographies and autoethnographies focused on disability. 
      In their book about autobiographies, Smith and Watson (2010) identify sixty 
autobiographic sub-genres. They include autosomatography/autopathography, characterized 
by personal narratives challenging stereotypes about people with disabilities, but describe 
them as unique form of autobiography. They cite Thomas Couser, who suggested that these 
narratives may also be referred to as "anti-pathologies"; in his experience, the motivation to 
write first-person narratives is to de-pathologize the self. Couser defined "autosomatography" 
as distinct from third-person narratives not written by people with disabilities themselves. 
First-person narratives critique social constructions of the disabled body and employ counter-
narratives of survival and empowerment, thus redefining the individual body outside the 
social stigma and the medical discourse. Moreover, Couser suggests that there are diseases 
and disabilities that have inspired more autobiographic writing than others. Most prominent 
are narratives about breast cancer, HIV/AIDS, deafness, and paralysis, and most recently, 
narratives about blindness, depression, and autism (Smith & Watson, 2010, pp. 261-262).
      Disability studies scholars affiliated with the humanities have also used personal 
experiences of disability to various degrees in their research, emphasizing diverse 
embodiments. Tobin Siebers, for example, used first-person anecdotes as both evidence and 
as a platform for philosophical and social discussions. In his Disability as Masquerade (2004) 
Siebers shared his experience with airports, as a means to discuss 'passing', or in this case 
failing to 'pass' as disabled: 
"In December 1999, I had an altercation at the San Francisco airport with a 
gatekeeper for Northwest Airlines, who demanded that I use a wheelchair if I wanted 
to claim the early-boarding option. He did not want to accept that I was disabled 
unless my status was validated by a highly visible prop like a wheelchair. [...] The 
incident was trivial in many ways, but I have now adopted the habit of exaggerating 
my limp whenever I board planes. My exaggeration is not always sufficient to render 
my disability visible gatekeepers still question me on occasion but I continue to use 
the strategy, despite the fact that it fills me with a sense of anxiety and bad faith, 
emotions that resonate with previous experiences in which doctors and nurses have 
accused me of false complaints, oversensitivity, and malingering" (p. 1).
      'Passing' and non-passing, and other responses to ableist stares were also addressed by 
Rosemarie Garland-Thomson, Carrie Sandahl, and other prominent disability studies scholars. 
In her book Staring: How We Look (2009), Garland-Thomson shared her own and others' 
bodily experiences of being stared at by children, and being asked about missing limbs. 
Sandahl (1991) used her memory of posing for a medical textbook as a child in her critique of 
the performativity of disability: "I submitted to being photographed, running my mother's 
words over and over in my head, fighting the urge to lower my arms and cover my nakedness. 
I remember the male photographer's silhouette behind the camera and how I was praised 
('good girl') for my compliant performance. I was also told that my face would be concealed 
when the photos appeared in the textbook, so no one would know it was me. I came to 
understand that my defective body could be separated from 'me,' that my body was not really 
'me'" (p. 11). In recent writing, embodied experiences are even more apparent in disability 
studies scholars' research such as Janet Price and Margrit Shildrick (2002), Alison Kafer 
(2013), Ellen Samuels (2017), and others. In these works, the body becomes a compass for 
understanding diverse beings in the world. 
      In film theory, as in the humanities, it is unusual to write about a subjective 
experience, unless you are analyzing an aesthetic representation in a text. Prominent 
exclusions are phenomenological and affect film theories, which seek to explore spectatorship 
and spectators' bodies, and thus involve personal perception. Linda Williams, for example, 
opens her seminal "Film Bodies" essay by explaining the motivation for the study through an 
anecdote about her son's perception of horror films: "When my seven-year-old son and I go to 
the movies we often select from among categories of films that promise to be sensational, to 
give our bodies an actual physical jolt. He calls these movies 'gross'. My son and I agree that 
the fun of 'gross' movies is in their display of sensations that are on the edge of respectable. 
Where we disagree and where we as a culture often disagree, along lines of gender, age, or 
sexual orientation is in which movies are over the edge, too 'gross'" (Williams, 1991, p. 2). 
Williams then uses the insight she gained from watching films with her son in the study of 
their possible effects on their differently gendered and aged bodies. Such anecdotes are rare in 
film theory; generally, film scholars address subjective experiences, self-representation, and 
bodily sensations only when describing their representation on screen, and not as self-
experienced.
      A prominent exception to this generalization is film scholar and phenomenologist 
Vivian Sobchack. Over decades of writing, Sobchack established a methodology of embodied 
autoethnographies. Her book, The Address of the Eye (1992) "...is often cited as the most 
rigorous of the film-phenomenology books, and indeed she does meticulously explore 
Merleau-Ponty's work in particular..." (Branigan & Buckland, 2015, p. 354). In What My 
Fingers Knew (2004c) Sobchack explains the motivation for inscribing one's body into the 
text: "Nearly every time I read a movie review in a newspaper or popular magazine, I am 
struck once again by the gap that exists between our actual experience of the cinema and the 
theory that we academic film scholars write to explain it - or, perhaps more aptly, to explain it 
away [...] Contemporary film theory, however, has generally elided both cinema's sensual 
address and our own 'corporeal-material being' as film viewers until quite recently." 
Sobchack's body is an integral part of her experience of the film and her analysis of Jane 
Campion's 1993 The Piano:
"Despite my 'almost blindness,' the 'unrecognizable blur,' the resistance of the image 
to my eyes, my fingers knew what I was looking at - and this in advance of the 
objective 'reverse' shot that followed and put those fingers in their 'proper' place 
(that is, where they could be objectively seen rather than subjectively looked 
through). [...] From the first (although I didn't 'know' it until the second), my fingers 
comprehended that image, grasped it with a nearly imperceptible tingle of attention 
and anticipation and, off-screen, "felt themselves" as a potentiality in the subjective 
situation figured on-screen. And this before I re-cognized my carnal comprehension 
into the conscious thought: 'Ah, those are fingers I am looking at'" (Sobchack, 
2004c, p. 53).
      As I will show in the second part of this paper, Sobchack teaches us that our bodies 
possess knowledge beyond our cognitive or intellectual comprehension. This concept is 
further explicated in her most autobiographic/autoethnographic writing, which focuses on 
living with a prosthetic leg. In her "Living a 'Phantom Limb': On the Phenomenology of 
Bodily Integrity" (2010); "A Leg to Stand On: Prosthetics, Metaphor, and Materiality" 
(2004); and "Choreography for One, Two, and Three Legs: A Phenomenological Meditation 
in Movements" (2017); Sobchack offers a phenomenological autobiography of living with a 
disability, through which she articulates the corporeal and bodily experience of being in the 
world. 
Bodies, Tables, and Podiums, or: What Film Scholars Need to Learn 
from Disability Studies
      In anthropology, autoethnographies are openly social and political. Reed-Danahay 
(1997) defines autoethnography as a form of self-narrative that places the self within a social 
context. Autoethnography is both a method and a text, as is ethnography. Autoethnography is 
also more accessible and can be done by either an anthropologist who is doing 'home' or 
'native' ethnography, or by a non-anthropologist/ethnographer. It can also be done by an 
autobiographer who places the story of his or her life within a story of the social context in 
which it occurs (p. 9). In their Autoethnography: Understanding Qualitative Research (2015) 
Tony E. Adams, Stacy Holman Jones, and Carolyn Ellis provide four main motivations to 
write an autoethnography: the first is to critique, make contributions to, and/or extend existing 
research and theory. The second is to embrace vulnerability as a way to understand emotions 
and improve social life. The third is to disrupt taboos, break silences, and reclaim lost and 
disregarded voices. The fourth is to make research accessible to multiple audiences (p. 36). 
While anthropology's ethnographies use personal narratives to mobilize readers, the anecdotes 
and coming-out narratives seek to touch audiences and evoke reflexivity, a renewed 
awareness. 
      However unpopular personal narratives are in film studies research, they are in fact all 
around us in varying degrees: at national conferences, in classrooms, toilets, and in faculty 
lounges. We interact, share, and disclose subjective and sometimes intimate aspects of our 
lives. Moreover, we often use personal stories to convey complex messages, to declare our 
positions, publicly acknowledge what had been personal, and take responsibility for our 
actions. Mostly, we choose to do so willingly, as a means of communicating intimately, 
despite any possible negative effects or vulnerability. Last summer, a colleague organized a 
film conference that was open to the public, and invited me to present my research on short 
avant-garde animations about disability. Shortly after the premiere of a new web series, 
Spectrums (Ezra & Launer, 2017), about the Israeli trans* community, he asked me to present 
my analysis of a few episodes instead, which would give him a chance to screen the series at a 
large cinemateque theater. This rather common interaction put me in a difficult position; at the 
time, I had not yet publicly 'come out' as trans*. While it had always been my choice as to 
when, where, and to whom I came out, this situation meant that I had to choose between 
closeting myself or come out very publicly, at a time and place set by someone else. Also, 
refusing the offer would have meant excluding an important series from a conference wherein 
it deserved to be screened, discussed, and dare I say honored. Furthermore, refraining from 
presenting on trans* issues when given the chance was something I perceived as not standing 
behind my community. This was an opportunity to educate; I simply could not have said no. I 
enjoyed watching and researching the series and its unique cinematic style, and its infinite 
possibilities of trans* temporalitis, and I enjoyed thinking about how it draws from both queer 
and crip (quip) themes. However, I was very anxious (mainly dysphoric) while writing; my 
thoughts were often scattered, and I was stressed about the deadline. When I presented, I was 
more nervous than I was the first time I ever presented at a conference. My voice and legs 
were shaking, my palms were sweating, and I was not sure that anything I was saying was 
even coherent. However, only now that I am narrativizing this experience do I realize that it 
had become a 'coming out' story, one of many. 
      Coming out narratives appear in personal stories and anecdotes and are infrequently 
incorporated in academic publishing, and presented in classrooms and conferences. Although 
our subjective ways of being in the world find themselves in our theories, only a few people 
willingly and publicly acknowledge that fact, and what that way of being means for them. 
Public acknowledgements are performative, not only in the sense that they rely on former 
comings out, but also in provoking responses. Acknowledgements, direct declarations, as well 
as personal stories are noticed. And they are political tools, forcing visibility on what is 
otherwise erased. Coming out narratives are a part of the broader authoethnographic 
methodology. Anthropologist Tony E. Adams (2011) writes about his experiences with 
coming out: "There was the student who, the week after I came out to the class, wrote in a 
course paper that she likes women but refuses to talk about it with anyone, and the student 
who told me that his mother and father said he was "no longer their son" and kicked him out 
of their house. [...] In classrooms and my office, on the street, in restaurants and bars, and at 
festivals and church, I never know when I will hear struggles with the closet, coming out, and 
same-sex attraction" (p. 28). Adams focuses on what this performative declaration does to the 
'audience', particularly their effects on people who share his identity. As these public 
acknowledgments provoke response, ethical questions of responsibility surface. Adams 
addresses privacy issues: "...these experiences require me to use great care: ethically, I must 
protect the privacy of these persons by masking or altering identifying characteristics such as 
circumstance, topics discussed, and/or race, gender, and name. Persons with same-sex 
attraction encounter many personal and social pressures; consequently their identities need to 
be protected, especially if their experiences are being used in ways they never may want or 
know" (ibid). However, in this essay, I attempt to explore the transformative effects of 
disclosures, and the responses that they invoke.
      After attending several annual meetings of the Society for Cinema and Media Studies 
(SCMS), and sensing the lack of a conversation about disability studies' place in it, I 
organized a panel to address this under-representation. Seeking to engage the more 
philosophy-inclined film scholars, I invited Prof. Laura U. Marks, well-known for her 
profound work on embodied aesthetics, phenomenology, and postcolonial theory, to respond 
to the panel and offer possible connections between film philosophy and crip theory. The 
panel, entitled Cripping Film Theory: What Can We Learn about Spectatorship from 
Disability Studies? sought to offer new theoretical approaches to cinematic spectatorship 
using disability studies and crip theory. Film theory has tended to privilege the seen over the 
heard and other bodily senses, although, as experienced spectators we know that "When we 
watch a film, all our senses are mobilized, and often, depending upon the particular 
solicitations of the film, ... our naturalized sensory hierarchy and habitual sensual economy 
are altered and rearranged" (Sobchack, 2000). The panel suggested that disability studies may 
offer new perspectives on rethinking spectatorship, and expand vision-centric film theories. 
Kathleen McHugh's presentation focused on touching and tasting and further complicated 
cinema studies' theories of the gaze through Rosemarie Garland-Thomson's articulation of the 
stare. Allison R. G. Ross presented a queer and crip analysis of visual and mainstream 
visuality techniques. Specifically, she focused on how discourses which seek to "erase" or 
"correct" disabled or non-normative bodies or non-heteronormative sexual identities by 
rendering them "legible," "functional" or "cured," are challenged by works which 
problematize these discourses. (Rebecca Sanchez was supposed to make a presentation about 
the embodied language of Chaplin's work through critical deafness, but unfortunately could 
not attend.) I presented three short animated films that offer an antidote to the social 
organization of vision, and above all, to the supremacy attributed to vision in the experience 
of spectatorship. I suggested that what crip theory may teach film scholars, especially through 
accommodative forms, is that our differently-abled bodies go beyond traditional 'watching' 
and 'listening' in cinema.
      This was also the first SCMS conference to include a land acknowledgement in the 
program, which the chairs were asked to read before presenting the panel. For those familiar 
with disability studies conferences, this is a standard presentation, followed by a disability 
statement. This new addition called attention to the absence of the disability statement. While 
it is now common knowledge that accessibility means ramps and toilets, even when 
everything is seemingly made accessible, the potential users of these are imagined to be solely 
attendees; no one seems to envision that speakers might be disabled. In a recent Feminist Film 
conference I presented, for example, the building, hall, and toilets were wheelchair accessible. 
However, the stage was an elevated structure with a podium, a table and five chairs with 
several steps leading to it. No presenters at that conference used wheelchairs, so the organizer 
and participants did not have to address this potential issue. Another feminist conference that I 
attended celebrating a feminist nongovernment organization's thirty years of activism 
resolved this problem creatively. Although the organizers called ahead to ensure that the 
building had accessible halls and toilets, the theater's representatives neglected to mention, or 
it simply did not occur to them as necessary to say, that the stage was not accessible. Only 
when the first presenter who uses a wheelchair was about to get to the stage did the organizer 
realize that it was inaccessible. In an activist context and nonacademic setting, the organizers 
asked everyone to leave the hall and move into the lobby where they reset the microphone, 
and brought out some chairs. What I imagine would have happened at the aforementioned 
academic feminist film conference given the same set of circumstances, is that they might 
have seated the presenter below the stage, thus rendering the speaker partially visible or 
entirely invisible to the audience. However, this disembodying of the disabled body is but a 
radical case of disregard of the body. If we examine the podium, a central artifact in the 
conference stage design, for example, we find that it functions as an eraser or concealer of the 
body; it is meant to illuminate and enhance cognitive/intellectual perception. Designed to 
make it easier for the speaker to read notes, hold a glass of water, etc. and amplify the 
speaker's voice with and microphones, the modern podium does so effectively only for those 
who happen to fit standardized bodily norms.
      In film studies, the arts, and humanities, we are not supposed to speak about our 
subjective perceptions nor the corporeal aspects of our bodies. We may use anecdotes, analyze 
bodies on screen and in narratives; but directly sharing our bodies' histories is not yet 
legitimate. I often see colleagues and friends sneaking out during fascinating discussions 
because their bodies physically ache from the sitting position. They each hide their need to 
stretch, lie down, walk, and move their bodies. Others, myself included, are overloaded by the 
enhanced sensory, intellectual, or social stimuli, and thus seek quiet dark spaces in which to 
relax. We meet at the line to the only accessible and gender-neutral toilets, and only there are 
we free to speak about our bodies. Public coming out narratives, sharing personal experiences, 
and body histories are more appreciated in disability studies, for the most part, than they are in 
film, arts and humanities, as noted. Critical examinations of the body, and the self in social 
contexts are the fundamentals of disability studies' philosophy and methodology.
      What happened after the SCMS panel was yet another example of the transcendental 
effect of embodied coming-out narratives. In Laura U. Marks' very thorough response to the 
panel, she 'came out' as having mirror-touch synesthesia, a condition of sensual empathy. A 
week after the conference, I was teaching a class in which I presented Marks' book The Skin 
of the Film (2000). A student interrupted the conversation and described sensations similar to 
those shared by Marks herself and identified as mirror-touch synesthesia, although I never 
mentioned it nor was it in the book. Similarly, every time I teach Vivian Sobchack's What My 
Fingers Knew (2004), and screen Samantha Moore's animated documentary, An Eyeful of 
Sound (2010), at least one student comes out as having synesthesia. These experiences are 
evoked by sensual and body diversity and a conversation about them. Our bodies' knowledge 
engages with other bodies in ways beyond our intellectual perception.
      Following my presentation and coming out at the panel at the Cinemateque that I 
mentioned, I met a former student who took my Body in Cinema class several years ago, also 
a trans* person. He shared my part in his coming out narrative, through a memory of my then 
butch presence. He also remembered me recommending J. Jack Halberstam's Female 
Masculinity (1998), which was my own inspiration. The language in which our bodies spoke 
to each other's was not yet narrativized; however, it was inter-subjectively perceived beyond 
language. Sharing our bodies' histories in research, conferences, and classrooms evokes 
intersubjective responses beyond our awareness, because our bodies bear knowledge of their 
own. Disability studies' contribution to the disciplines of film, arts and humanities results in a 
renewed awareness of the different forms and shapes our bodies take in researching, writing, 
teaching, and interacting with the world. Disability studies forces us to acknowledge our 
diverse ways of reaching our writing desks, and to defy the admiration of disembodying 
podiums and the types of bodies that they accommodate.
Phenomenological Autobiography of Living with a Disability, or: 
What Disability Scholars Need to Learn from Film Scholars
      A decade after the conceptualization of the medical and social models in disability 
theory, Tom Shakespeare and Nicholas Watson (2002) argued that these models created a 
dichotomy between impairment, which is perceived as personal and embodied, and disability, 
which is defined as a social issue. They suggest that we let go of these models, and instead, 
focus on disability embodiment and disability as an identity. Such emphasis will enable a 
constant undermining of the dualism of impairment/disability, and proposes the investigation 
of the body as a new starting point for disability studies (pp. 22-28). Film scholar and 
phenomenologist Vivian Sobchack theorizes her embodied autobiography and complicates the 
assumed perception of a 'fundamental philosophy.' Sobchack's writing may also be read 
within the embodiment model of disability studies, as she examines her body's intentionality 
towards the world in various situations: sitting through epic historic films in Surge and 
Splendor (1990), her fingers, skin, nose, lips, tongue, and stomach in What My Fingers Knew 
(2000), and all other parts of her body in The Address of the Eye (1992). In her book, Carnal 
Thoughts (2004c), Sobchack thoroughly explores the phenomenology of living with a 
prosthetic leg.
      Sobchack articulates her own concepts, methodology, and style, which derive from her 
embodied phenomenology. In three of her essays, Sobchack (2004c, 2010, 2017) addresses 
the phenomenology of living with a disability directly, without it being foreshadowed by film 
analysis, nor used as metaphor. Her methodology provides theoretic and often poetic 
frameworks for investigating disability through bodily autobiographies. Sobchack offers an 
"intimate laboratory" through which she theorizes the phenomenological autobiography of 
living with a disability. Rather than discuss the articles chronologically, I propose a 
phenomenological order, illuminating the multiplication of organs. The three essays propose a 
supposedly counter-intuitive experience of amputation resulting in gaining a phantom limb, a 
prosthetic, and a cane. Not only is 'losing' a leg not narrated as a tragedy in Sobchack's 
philosophy, her body's transformations and shifting intentionalities position the disabled body 
as closer to the renewed awareness that phenomenological philosophy strives to achieve. 
      In Phantom Limb, Sobchack creates a vocabulary to describe embodied experience 
through disability. Like many disability scholars, and a few film scholars, Sobchack sets the 
grounds of her field by means of an anecdote about an encounter with a child, who gazed at 
her:
Shortly after my amputation, at the supermarket on crutches, I was confronted 
by the curious gaze of a lone little girl, probably not much older than three. 
'Where's your arm?' she asked. 'You mean leg', I replied. She stared at the 
empty space beneath my skirt and persisted: 'Where's your arm?' 'You mean 
leg', I said again, trying to think of an explanation that would be 
comprehensible to a toddler: 'My leg got sick. I had to take it to the hospital.' 
As she was pondering this, her mother appeared and the child pointed at me and 
asked, 'Where's her arm?' Clearly embarrassed more by the social situation 
than by her child's anatomical mistake, the mother nonetheless dealt with the 
supposed gaucherie of the former by apologizing for the latter. 'I'm really 
sorry', she said, 'I broke my arm last year. It was in a cast for a while and must 
have made quite an impression on her.' (Indeed!) (Sobchack, 2010, p. 55).
      This anecdote serves as a springboard to discuss our limited knowledge of our own 
bodies. A similar anecdote about a child's stare, shared by an interviewee, was used by 
Rosemarie Garland-Thomson for a different theory: "'[I]n the past I have responded quite 
unfairly to staring people. One tiny child once asked me where my leg was, and I (sort of fed 
up that day) looked down and FREAKED OUT! 'Oh my God!' I exclaimed, 'I had it this 
morning!' Now I simply tell them I was sick and the doctor took it off and wait to see if they 
have any other question" (Gerald-Thomson, 2009, p. 89). For Gerald-Thomson, 'starees' feel 
responsible for educating a child about tolerating human differences or indulging a child who 
does not yet know not to stare. For Sobchack, the gazer inter-subjectively orients our 
awareness of our bodies. The anecdote thus allows for both an embodied and a critical 
discussion - central to both film and disability scholars - about absence and excess, real and 
phantom. Furthermore, social movements are discovering that it is no longer possible to think 
in Cartesian/Kantian ways about the body and society. Social interaction is intercorporeal, as 
well as intersubjective (Merleau-Ponty, 1962, as cited in Hughes & Paterson, 1997, p. 340).
      Phantom Limb focuses the phenomenon of the transforming body, or a 
phenomenology of becoming disabled. Sobchack's articulation of the corporeality of the 
phantom limb echoes disability studies scholar Ellen Samuels' embodied autoethnography in 
Six Ways of Looking at Crip Time (2017). Samuels uses her bodily history to explain crip time 
as broken time: "It requires us to break in our bodies and minds to new rhythms, new patterns 
of thinking and feeling and moving through the world. [...] It insists that we listen to our 
bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the 
body away from us while also pushing it beyond its limits. Crip time means listening to the 
broken languages of our bodies, translating them, honoring their words" (Samuels, 2017, np). 
Samuels and Sobchack seek new words to describe the body. Although striving to articulate a 
physical disability, Sobchack focuses on its invisible aspects the phantom/real sensations. 
Such narratives, concepts, and acknowledgements reinforce the claims made by people with 
invisible disabilities, most prominently the Mad Studies movement, but also people dealing 
with chronic pain and fatigue, who struggle to provide evidence of their experiences. These 
"intimate laboratories," as defined by Sobchack, further undermine present/absent, 
real/imaginary dichotomies that film and humanities scholars seek to challenge.
      In "A Leg to Stand On" (2006), Sobchack addresses the materiality of disability and 
its lived aspects involving gender and class. The essay may be interpreted as aligned with 
feminist criticism of universal phenomenology, such as that posited by Simone de Beauvoir, 
Luce Irigaray, Judith Butler, and Sara Ahmed. They criticized the universalistic position and 
the basis of "the fundamental philosophy" presented by phenomenologists like Edmond 
Husserel and Maurice Merlau-Ponty. Examining Merleu-Ponty's supposedly gender neutral 
and generalizing position in his later work about the body, Beata Strawaska (2006) argues that 
the problem in the universalistic approach is that it aims to present a wholesome theory of 
bodily experience based on the (male) norm or (male) standard (pp. 92-93). The relations 
between the disabled body and the social aspects of gender, class, and race have been 
thoroughly discussed by disability studies scholar Alison Kafer (2013). Kafer analyzes 
various studies which suggest that people of color (POC) and underprivileged populations are 
treated more aggressively due to the inaccessibility of quality treatment for chronic illness. 
Kafer concludes, that 'some futures (and some bodies) are more protected than others' (p. 34). 
      However, Sobchack's works dig to the base or root of embodiment, and focus on the 
corporeality of the flesh. Sobchack shares the 'unsexy' details of her prosthetic leg: "... my 
full (and rather ordinary) 'AK' leg cost no less than US $10,000-$15,000, since a top-of-the-
line carbon fiber 'BK' prosthesis used for sports competition (with a special Flex-Foot its 
inventor also calls the "Cheetah Foot") costs at least US $20,000 per leg. Should I wish it 
(which I don't), I could request that my HMO approve the purchase and fitting of the latest 
Bock 'C-leg' one in which microprocessors, strain gauges, angle detectors, hydraulics, and 
electronic valves 'recreate the stability and step of a normal leg.' [...] On the other hand (or 
leg?), the health maintenance organization (HMO) might refuse me not only because the "C-
leg" costs US $40,000-$50,000 but also because I'm a woman of a certain age who is 
generally perceived as not needing to be so 'well equipped' as someone who is younger (and 
male)" (Sobchack, 2004b, p. 219). These details are meant to ground the material of a 
prosthetic, its mundane reality, and relations with her body. However, the phenomenological, 
social, and institutional relations discussed by Sobchack are also transformative: "...my 
consciousness, for example, altered at times by a heightened awareness not only of such 
things as the availability of 'handicapped' access and parking but also of the way in which 
city streets, although still the same objective size, have subjectively expanded in space and 
contracted in time so that responding to traffic lights now as I cross the street creates a 
heightened sense of peril and anxiety I never felt before my amputation" (pp. 219-220).
      Sobchack describes prosthetics materially, and argues against using it [only] 
metaphorically or figuratively. "...somehow, somewhere, in all this far-reaching and 
interdisciplinary cultural work (and with the exception of disability studies), the literal and 
material ground of the metaphor has been largely forgotten, if not disavowed. That is, the 
primary context in which 'the prosthetic' functions literally rather than figuratively has been 
left behind as has the experience and agency of those who, like myself, actually use prostheses 
without feeling "posthuman" and who, moreover, are often startled to read of all the hidden 
powers their prostheses apparently exercise both in the world and in the imaginations of 
cultural theorists" (p. 208). However, even in disability studies, prosthetics may sometimes be 
used as metaphors, albeit with well-intended purposes such as in Narrative Prosthesis: 
Disability and the Dependencies of Discourse (Mitchell & Snyder, 2000).
      In "Choreography for One, Two, and Three Legs," Sobchack further rejects the 
boundaries of the body parts and re-organizes concepts of embodiment through prosthetics, 
canes, and intersubjective relations with other bodies:
When the music slowed, my prosthetist came to my table and asked me to dance. My 
first reaction was, in no small part, terror. Not only was my body suffused with 
memories of dancing badly in public even before I had a prosthetic leg, but it was also 
stiffened by the fear of falling - or was it flying? 'I can't', I said. But Steve would not 
take 'no' for an answer. 'You can', he said. (Candoco, indeed!) And he pulled me up 
from the table, took my cane from my hand and hung it on my chair, and, putting my 
hand on his shoulder and his around my waist, he moved me into a space on the dance 
floor. 'Listen to the music and trust me', he said - and I realized that, unlike all those 
teenage boys whose lead I refused to follow, I could - and I felt myself relax, yield to 
the music and the rhythm and the improvisational give and take of the bodily 
movement we made together. I forgot to look at my feet. I forgot to think 
choreographically - that is, in specific terms of my individual steps and also ahead of 
them. And although, unlike Catherine Cole, I did not end this dance with a pirouette 
on one leg, for the moment I did displace focus on my bodily immanence to the 
transcendent ensemble of our movement and I really began to waltz (2007, p. 196).
      Sobchack's multiple legs - flesh and prosthetic, 'real' and phantom, canes and other 
people's shoulders extend the body in a corporeal sense. This inherent intentionality towards 
other bodies conjures the feminist co-dependence with a crip 'touch ethics.' 
      Also applying Merleau-Ponty's writing about the intersections between senses and 
intersubjectivity, Janet Price and Margaritt Shildrick (2006) explore these concepts regarding 
a possible 'touch ethics'. Merleau-Ponty's famous example of the intertwining of senses was 
touching hands; the hand touches and is touched simultaneously. The touching hands model 
has already been thoroughly re-interpreted by feminist scholars, yet further exploration of the 
concept through disability studies offers an additional layer of meaning to corporeal 
experience. Price and Shildrick examine the touching hands anecdote by placing a person with 
a movement disability on the receiving end of the touch and a complete stranger on its giving 
end, or a person with a hearing or visual disability who uses touch to get attention, orientation, 
or recognition. Moreover, the clinical encounter between doctors and people with disabilities 
invokes intimate touch within an unequal power relationship (Price & Shildrick, 2002, p. 70). 
Despite the power relations invested in bodies touching, what phenomenological philosophy 
offers through the intersectionality of senses is that absolute mastery is not possible. Price and 
Shildrick ask further, "What does it mean to hold a hand that has temporarily lost sensation 
that cannot press back in return? Why does your own hand suddenly feel clumsy in its 
gestures?" (p. 72). Through the reversibility of touch, "...we are in a continual process of 
mutual reconstruction of our embodied selves." Thus, the instability of the disabled body is an 
extreme instance of all bodies (ibid). Finally, Price and Shildrick conclude, "...if we fully 
accept both the phenomenological notion of the inseparability of bodyliness and being-in-the-
world, and the postmodernist contention that not only the subject but the body itself is 
discursively constituted and maintained, then it is necessary to rethink what would actually 
make a difference to those with physical disabilities. The disintegrity and permeability of 
bodies, the fluctuations and reversibility of touch, the inconsistency of spatial and 
morphological awareness, the uncertainty of the future, are all features that may be 
experienced with particular force in the disabled body, but are by no means unique to it" (pp. 
73-74). They suggest an ethics that acknowledges "...the constitutive relationship between 
the embodied subject and the world, the notion that our subjectivity consists in a becoming in 
a world of others" (p. 63). What we can learn from feminist critics, they argue, is to replace 
exclusionary models with ideas of embodied subjectivity, "...which is actively and 
continuously produced through social interactions with other body-subjects." However, these 
interactions are also enacted through our "bodies and their mutually constitutive effects one 
on another [...] the post-conventional perspective demands recognition that our sense of self, 
and how we orient ourselves to the world, is irrevocably tied up with the bodies of those 
around us" (Price & Shildrick, 2002, p. 63).
      Film theoretician Vivian Sobchack's phenomenology further complicates concepts and 
methods of investigating the human body, which are essential to both film theory and 
disability studies. Sharing her vocabulary, perception, and articulation of embodied 
autobiographies with disability studies' scholars and students may provide a philosophical 
methodology stretching the limits of anthropologist autoethnographies. Moreover, by 
conceptualizing diverse embodiments, the universal premises of "the fundamental 
philosophy," Sobchack's embodied autoethnography offers a seat at a desk once imagined as 
accommodating only able-bodied-white-cis-men. 
Toward Possible Conclusions
      Disability Studies scholar and anthropologist Amy Shuman (2012) talked in an 
interview about the democratic participation brought forth by the Americans with Disabilities 
Act (ADA), and questions about access that were consequently raised: "If we believe that a 
democracy brings everyone to the table, then literally how do you bring everyone to the table? 
Sometimes it's a question of access to the table, being able to see, hear or understand what's 
going on at the table. So people with intellectual disability are at the last frontier, because we 
don't expect them to be at the table." She concluded that it would be interesting for people to 
ask themselves "why they wouldn't be interested in disability studies. What's not relevant 
about it?" Seeking to raise these questions, I have brought film and disability scholars around 
my own table, hoping it accommodates their perceptions and allows room for their insights of 
being in the world.
      Embodied autoethnographies offer both film and disability scholars a methodology to 
examine their bodies more intimately, and get reacquainted with the ways in which it surfaces 
in our writing. By focusing on our differently abled bodies while we read and write, teach, 
listen and speak, take to a podium at a conference, or what toilets we use on breaks, 
universalistic perceptions of being in the world are further challenged. These disability 
autoethnographies offer new means of rethinking our bodies, beyond socially constructed and 
policed dichotomies of mind/body, lack/excess, real/phantom, etc.. Embodied autobiographies 
remind us that our bodies do not merely orient our being in the world, but also determine our 
understanding of 'being' and the 'world.'
      Finally, practices of sharing our bodies' histories, through anecdotes, coming out 
narratives, autobiographies, or autoethnographies, do not only expose an emotional 
vulnerability; rather they speak to other bodies in an intersubjective language beyond 
cognitive comprehension. And while we still find limits in pursuing our intentionalities and 
orientations towards chairs, desks, podiums, stages, or simply toilets - the anecdotes, comings 
out, statements, and acknowledgements - stretch out to bodies in undermined, uncharted, and 
inexplicable ways.
Slava Greenberg is a Ph.D. candidate in the Steve Tisch School of Film at Tel Aviv 
University, where he teaches film theory, media, and disability studies. Slava wrote his master 
thesis on Body in Conflict: The Disintegrated Body in Israeli Post-Second- Intifada Films. His 
dissertation research focused on short avant-garde animation, disability, and spectatorship. He 
has presented chapters from the dissertation in film and disability studies conferences and 
publications (Animation, Frames, Jewish Film and New Media, and contributed a chapter to 
Documentary and Disability). Slava's current research conjures Trans* Studies and Crip 
Theory in documentary film.
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Endnotes
1.	I use 'coming out' narratives, borrowed from queer theory, to describe any form of 
declarations of one's invisible identity (LGBTQI or invisible disabilities).

  
Stories Our Bodies Tell: The Phenomenology of Anecdotes, Comings Out, and Embodied 
Autoethnographies by Slava Greenberg is licensed under a Creative Commons Attribution 4.0 
International License. Based on a work at 
http://rdsjournal.org/index.php/journal/article/view/883. Permissions beyond the scope of this 
license may be available at https://www.rds.hawaii.edu.
       
Best Practices
Inclusive Economic Strategy For People With Disabilities:
Proactive Management, Organizational Change: A Reasoned 
Approach to Disability
Bachir Kerroumi, PhD
Laboratory LIRSA
Abstract: The answers to the problem of employment of people with a disability in 
businesses have often focused on social issues. However, the context which determines the 
inclusion process mainly depends on project management within organizations. Our purpose 
is the analysis of favorable factors in management strategies and approaches to people with 
disabilities.
Keywords: effective management, managing inclusion, social model
Introduction
      For any organization, managing people with disabilities involves the setting up of a 
strategy to manage the diversity of the productive potential of every individual (Allen, 1994). 
First, this requires the development of a reasoned approach to disability, by understanding its 
nature and identifying its possible consequences, both positive and negative, in order to 
implement appropriate techniques and expertise to compensate for the disability in the context 
of any given job. Secondly, it is important to analyze the set of tasks entailed in a job, both to 
measure the compatibility of a person's skills with these activities, and to highlight ways in 
which the employee with a disability may cooperate with his/her able-bodied colleagues. An 
example of this process would be identifying exchanges of work tasks to allow the person 
with a disability to reach the same level of productivity as other members of the team. A 
deliberate effort is needed within the team to develop strategies aimed at the inclusion of 
people with disabilities, avoiding their isolation. For this purpose, the measures needed to 
ensure accessibility and inclusion within an organization require the involvement of 
managers, since they must be put at the center of inclusive processes for people with 
disabilities. Disabled people's skills and potential productivity must make up the core of any 
action plan to reach the goal of genuine inclusion. 
      The advent of new technologies (Burgstahler, Comden, Lee, Arnold, & Brown, 2011), 
namely the ergonomic adaptation of working tools (assistive ware, ergonomic desks, 
computing braille display) allows specific tasks to be carried out by workers with disabilities. 
For example, the fact that people with disabilities in management positions bring added value, 
both for productivity and innovation, is already well established (Mitra, 2006). Colleagues 
with a disability in managerial positions have proved their worth in many organizations. They 
work at all levels, develop their own strategies for compensation, with or without technical 
support. Their disability often forces them to develop additional skills to balance the 
disability, whether physical or sensory. Hence physically colleagues with disabilities might 
dynamically optimize their concentration and acquisition of new skills in relation to their 
work. Similarly, visually impaired colleagues might reorganize work methods with perhaps 
more emphasis on abstract concepts. In the workplace, people with a disability, backed with 
their differences, directly or indirectly bring richness in methodology across organizations.
In-Work Training and Promotion
      In-work training is seldom used as a leverage tool to promote the inclusion of 
employees with disabilities in managing strategies (Allen, 1994). There are many obstacles to 
this possible path to promotion. For example, the burden of legal and administrative 
regulations creates a micro-market of training specially designed for people with disabilities, 
in which choices become far too limited (Schur, Kruse, Blasi, & Blank, 2009). Failure to 
develop continuing education or training is a hindrance to career development. The lack of 
strategy with respect to recruitment of persons with disabilities in typical work situations 
(conventional labor market) is obvious. The vast majority of people with disabilities who have 
higher education qualifications come late to a full-time professional work, whether in the 
private or public sector (Schur et al., 2009). According to the European Union Eurostat 
statistics published in 2011, 47% of people with disabilities are working, compared with 66% 
of people without disabilities. In most countries of the European Union, 24 out of 28, (see 
Eurostats) the lack of fundamental equal rights such as the disability discrimination legislation 
for education and employment (Mitra, 2006) is a key explanatory variable.
Analysis and Suggestions
      In the context of policies based on voluntary choices rather than legal enforcement, it 
would be wise to carry out an audit on the management of human resources with respect to the 
inclusion of employees with disabilities. It is worth analyzing organizational procedures in 
relation to the application of legal regulations (Mintzberg, 2013). This evaluation must take 
into account the following points:
?	Recruitment mechanisms which consider the specific needs of the person with a 
disability;
?	The approach of management towards disability (differentiated management or 
management integrated into the global strategy);
?	Involvement of employees with a disability at the heart of all services;
?	The benefits of dynamic management strategy of people with disabilities for all 
employees (Riddell, Edward, Weedon, & Ahlgren, 2010);
?	Ergonomic approaches to work settings and equipment (defined by productivity or 
limited to the adaptation of equipment);
?	The role of the workplace doctor (compulsory in France although optional for most 
European countries), its involvement in recruitment processes and redeployment must 
only focused on health aspects;
?	The redeployment process (based on medical diagnosis or skills assessment);
?	The impact of perceptions of employees with a disability on the behavior of their 
peers.
      The findings from this evaluation will be used to identify the strands of work needed 
to achieve the goal of employing people with disabilities at the heart of organizations in the 
best possible way: to meet labor needs effectively and to develop an efficient managerial 
strategy in relation to abilities (Mintzberg, Lampel, Quinn, & Ghosha, 2003). The framework 
for carrying out such an audit must take into account, the elements making up a global 
strategy for managing human resources, as well as, changes of approach that will help 
integrate employees with disabilities and avoid any possible isolation. In this way, the 
inclusion initiative can effectively pay off, and bring genuine progress to a global strategy. 
The central leverage points on which the project must rest upon are: 
?	Methods used to recruit employees with disabilities;
?	Know-how with regard to redeployment and re-training of employees;
?	Systems to support in-work training;
?	Ergonomics that are truly integrated into the work organization;
?	A policy consisting in predicting needs before they arise;
?	Subcontracting to the specialized disability sector (associations, cooperatives, 
specialized companies).
Objectives of the Management Initiative
      The targets in this dynamic management process are multiple and convergent:
?	Setup a policy based on voluntary rather than legal action, whilst making an effort for 
the short-term to meet national legal requirements and, consequently, to comply with 
those regulations which promote positive action for the employment of people with 
disabilities (Jones, 1997).
?	Balance recruitment and redeployment to introduce real equity in career development 
and establish the principle of non-discrimination inside organizations, to avoid all 
discrimination on grounds of disability (Shakespeare & Watson, 2002). So managers 
must achieve a greater presence of employees with a disability in each social and 
professional categories (Barel & Fremeau, 2013).
?	Change behaviors towards people with disabilities by bringing appropriate know-how 
to bear in the fields of management systems for disabled employees (Burkhauser, 
Schmeiser, & Weathers, 2012).
?	Consequently, by being of fundamental importance, these organizational techniques 
should hold a high priority in job retention initiatives. 
?	Create active cooperation between all the players to allow each one to participate 
effectively: Human resources management, direction and services, social partners and 
external specialized organizations involved in systems for inclusion in training: 
associations of rehabilitation, training centers, universities, job-seeking 
organizations...
Critical Factors
      Recruitment, in-work training and career development.
      It is important to restore the balance of representation of social and professional 
categories "workers, technicians, management" (Sen, 2002, pp. 659-666) within work 
organizations by recruiting employees with a disability.
      In-work training, known as an employees' right, is one essential tool for improving 
promotion of workers with disabilities. Whether specialized or mainstream, in-work training 
is also a tool for integration that will benefit all aspects of an employee's career progress. It is 
one of the success factors of integration. 
Redeployment
      Qualitative and ethical redeployment requires a job-retention procedure which takes 
into account the employee's status and previous career. In order to facilitate the roles redesign, 
an Integration and Redeployment Unit must be created in the Human Resources Department. 
This unit must have a high priority in accessing the budgets controlling the resourcing of 
workplace design and equipment, in-work training and skills assessment.	
Workplace Design and Accessibility
      Workplace design is a new specialization which arose from a study of ergonomics. It 
has gradually grown to include other disciplines such as computing, technical support, human 
assistance, etc. Working interfaces adaptation for employees with disabilities is necessary to 
achieve an autonomy similar to that of their colleagues without disabilities (Feldman, 2004).
      Experts have agreed on a definition of needs for workplace design (Florey & Harrison, 
2000) based on an analysis of the tasks to be carried out, leading to a set of specifications for a 
given role (Klimoski & Donahue, 1997). The practical strategy, experimentally developed by 
these experts, resolves technical problems and has led to a positive evolution of technical, 
mechanical, electronic and computer-based supports. It requires a mutual agreement and a 
sharing of experiences, through a formalized procedure using an organization's intranet, 
particularly between employees with a disability and internal technical support staff.
      In short, the success of the managers' undertaking, depends on the ability of 
improving technical accessibilities but also on the capability of keeping employees with 
disabilities regularly informed about technical assistance in relation to their work tasks. 
Accessibility, and the mobility of employees with disabilities at the heart of the work 
environment requires two complementary approaches: one based on the respect of regulations 
on building and workplace design, the other linked to an organization. The convergence of 
these two approaches meets the global needs of freedom of movement, security and comfort 
of all employees. 	
      Education of employees in work environments and the role of Health and Safety 
committees.
      The success of disabled people inclusion and integration depends on the perceptions of 
all the players in the working environment. Human Resources Departments must inform and 
raise awareness among operational services and trade unions to contribute to the development 
of a positive culture (Schur et al., 2009) about the social representation of people's 
differences. Training modules and education about the best ways of creating welcoming 
environments for employees with disabilities must be in place across an organization. In the 
same way, information and education of those in charge of apprentices must be ensured. 
Conclusion
      There are several categories of factors that further integrate people with disabilities 
into work organizations integration into work organizations. First, there is a need for 
establishment of a strategic management policy on employment and abilities, which would 
take into account the specificities of each employee category (women, men, young people, 
experienced and over 50 ...). Without this proposal, i.e. the creation of a management 
principle linking overall human resources and their potential, the management initiative for 
integration of people with a disability is at risk of falling into social welfare or even into 
charity. 
      It is crucial to establish education and information targeting all groups with 
responsibility within the organizational structure. This education must emphasize the abilities 
and potential of disabled people. Similarly, information about disability must be rationalized, 
to avoid any confusion with sickness or stages of illness. The players in this mission could be 
a member of the Human Resources department, a service director or somebody in charge of 
maximizing productivity. These stakeholders are more likely to create an inclusion initiative 
based on a productive capabilities system. In addition, the role of the workplace doctor (where 
applicable) must be strictly limited to diagnosis and identification of incompatibilities linked 
to impairments (for instance making decisions on behalf of people with disabilities or the 
managers). Counseling not decision-making. So if the organizational structure is well defined, 
regarding those who are involved in the process, then the inclusion initiative will be anchored 
into the culture and central concerns of the organization. 
      The obstacles to this process are often psychological, and linked to fear of the 
unknown. They can easily be overcome if those in power show a genuine will to change. 
Depending on what strategy is adopted, i.e. social, charitable or managerial, able-bodied 
colleagues will react either one way or the other. Often, people facing ignorance tend towards 
imitation (Shakespeare & Watson, 2002). So when we come face to face with employees with 
a disability we must above all avoid falling into a special behavior, often based on pity. In the 
long-term, we would run the risk of causing them to lose their dignity. It should be obvious 
that this type of relation is not natural, and long experience, study and observation on the 
ground, have confirmed its damaging effects (Colella, 2001). It has been especially well 
demonstrated (Kuznetsova, 2012), in English-speaking countries and Northern Europe, that 
behaviors, inherently linked to competence, mutually benefit employees with a disability and 
those working with them. Good practice begins with a successful implementation of the in-
house integration initiative, even if all the necessary know-how is not yet in place. Initially, 
cooperation may work only in one direction, that is, from the specialized partners to the 
organization, and not the other way. This way, the work organization will acquire all the 
necessary techniques to apply the initiative. It is worth noting that this initiative must be 
turned into dynamic action in order to achieve a real evolution either social, economic or 
technical. Above all, a fundamental mistake to avoid is not to create a parallel system for 
recruitment or redeployment. That will isolate employees with disabilities and keep them tied 
into medical or social models whose effectiveness has never been proven. Advice to managers 
would be the following: remember that the inclusion of employees with disabilities is part of 
the global strategy for any organization. It must be part of any framework for high quality 
organizational management. From a process perspective, in terms of productivity, this 
approach will improve the performance of systems such as formal management, as a lever for 
change and proactive strategy. Consequently, both recruitment and job-retention plans for 
people with disabilities must be embedded in social and economic framework.
Bachir Kerroumi, PhD Researcher-Associate of laboratory LIRSA in CNAM Paris, France.
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Inclusive Economic Strategy For People With Disabilities: Proactive Management, 
Organizational Change: A Reasoned Approach to Disability by Bachir Kerroumi is licensed 
under a Creative Commons Attribution 4.0 International License. Based on a work at 
http://rdsjournal.org/index.php/journal/article/view/829. Permissions beyond the scope of this 
license may be available at https://www.rds.hawaii.edu.
Dissertation Abstracts
Dissertation & Abstracts v14i4
Compiled by Jonathon Erlen, University of Pittsburgh
Edited by Megan Conway
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      REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL
Volume 14 
 Issue 4


Page 1

      
      REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL
Volume 14 
 Issue 4


Page 1