REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Editorial
Aloha Means Hello and Goodbye
Megan A. Conway, PhD
Review of Disability Studies: An International Journal Editor-In-Chief
Hawaii, United States

      In the summer of 2001 I was a new faculty member at the Center on Disability Studies 
(CDS), University of Hawaii, literally fresh off the boat from Berkeley, California and still 
calling myself "Dr. Conway" with awe and pride after years of pursuing my doctorate-or-die. 
I was chipper, passionate and dumb. I landed in Hawai?i as all Haoles do with preconceived 
and completely wrong ideas about life in Paradise and an irrational fear of giant cockroaches. 
And as a disabled white woman from the land of Crip Freedom and Pride, I was also in for an 
additional shock when confronted by prejudice and inaccessibility. Complaining about my 
rights under the Americans with Disabilities Act got me nothing but mute stares, mulish put 
offs and a muttered "show some Aloha." You think?

      I came onboard CDS to coordinate a federal grant focused on transition, but my 
somewhat (at the time) hidden passion was Disability Studies. I had nabbed the job at CDS 
partly via a connection between my Berkeley mentor Susan O'Hara and longtime Disability 
Studies Quarterly (DSQ) Editor David Pfeiffer, who was settling into semi-retirement in 
Hawaii and was pleased to have me increase the number of faculty with disabilities at CDS 
from 1 to 2. We were soon joined by fellow Cripstar Steven Brown, and felt ourselves almost 
overrepresented at our center then comprised of 100 faculty and staff.

      By 2003 David had been forced (by his account) to relinquish his editorship of DSQ 
and had decided to start a new journal, the Review of Disability Studies: An International 
Journal, with me and Steve as Assistant Editors. I was excited by the prospect of learning 
about academic publishing and the wild world of Disability Studies under David's tutelage. 
And then David died. I did not know David well personally, just had a great deal of respect 
for him professionally, but I do remember watching the canoes paddle out with his ashes on 
board thinking, quite selfishly, "now what"?

       Now what was the inaugural issue of RDS, published in December of 2004, 
conceived of and assembled by David and executed with great enthusiasm and limited 
experience by Steve and me. It was a gargantium issue, with 27 articles, essays, creative 
works, book reviews and notes from the field. Contributors (in addition to the three noble 
editors) included legends and novices, the now living and the now passed: Mark Sherry, 
Reiko Hyashi & Mariko Kimura, Mary Fleming & William Ross, Adam Corrico & Leonard 
Jason, Jennifer Coles, Janice Dewey & Megan OHare, David Connor, Beth Omansky, Alex 
Lubet , Steven Gilson & Elizabeth DePoy, Mark Medoff, Jillian Weise, Tanis Doe, Ottmar 
Paul, Jean Johnson and Steven Taylor. I really have no idea how or why we put together such 
a big baby, but it was a good baby and the beginning of a creative project that has sustained 
me through professional hardships and joys for the past 15 years.

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      As you may have guessed by now, I am leading up to a goodbye. After 18 years with 
the University of Hawaii and 15 years in various editorial roles with RDS culminating with 
Editor-In-Chief, I am heading back to California and handing over the reins of RDS to 
someone new. The baby is now a teenager and ready to try new things. I know that our 
wonderful Editorial Board, Review Board, Editorial Assistant, and new leadership will keep a 
steady course and maintain RDS' relevance in the ever growing field of Disability Studies. I 
leave the particulars of the "now what" for the new Editor.

      If you have made it this far in my monologue about the humanization of an academic 
journal, you might be curious to know what I am doing next. I am leaving academia for a bit, 
or forever, time will tell, to work in the "real world". Sometimes we have to move back to 
move forward. Sometimes we have to say goodbye to say hello.
      
Aloha Means Hello and Goodbye by Megan A. Conway is licensed under a 
Creative Commons Attribution 4.0 International License. Based on a work at 
https://rdsjournal.org. Permissions beyond the scope of this license may be available at 
https://www.rds.hawaii.edu.
      
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REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Research Article
Autism in Saudi Arabia: Present Realities and Future Challenges
Mona F. Sulaimani, PhD & Dianne M. Gut, PhD
Ohio University, Patton College of Education
Ohio, United States

Abstract: Despite improvements in the services provided to individuals with autism, some 
third world countries continue to struggle to provide services to individuals with autism. In 
this paper, the impact of culture on people's understanding of autism in the Kingdom of Saudi 
Arabia (KSA) is highlighted, as well as how its influence impacts the provision of necessary 
supports needed by individuals with autism. Using a historical context, the paper outlines the 
unique challenges presented by the culture and how these contribute to difficulties 
government agencies encounter in providing children with autism and their families with 
services.

Keywords: Autism; Disability; Special Needs; Culture; Service; Kingdom of Saudi Arabia

      The social conception of disability has been a topic of discussion across many 
countries and cultures with one major concern and challenge being how to best meet the needs 
of people with disabilities. With recent developments in technology and healthcare in many 
developed countries, knowledge and treatment interventions for diseases and genetic 
conditions have increased. However, developing countries are still working to improve their 
health sectors in an attempt to address the challenging health issues faced by their citizens, 
and disability is among the many issues with which they continue to struggle.

      The number of people with disabilities is rapidly growing in some countries. 
According to the World Health Organization (WHO, 2011), prevalence rates in low income 
countries was 11.8% as compared to 18% in high income countries, when measured by 2004 
gross national income per capita. "The burden of childhood disability as a public health 
problem in these areas of the world remains relatively unrecognized" (Shawky, Abalkhail, & 
Soliman, 2002, p. 61).

      In some cases, the development of special education in third world countries has been 
slow and challenging. Prior to 1958, in the Kingdom of Saudi Arabia (KSA), parents had full 
responsibility for caring for their disabled children (Alquraini, 2011). In 1958, some students 
who were blind or had visual impairments began receiving educational services in schools 
referred to as scientific institutes (Salloom, 1995). Later, in 1962, the Department of Special 
Learning was established by the Ministry of Education and has since been providing 
educational and rehabilitation services for individuals who are blind, deaf, and those with a 
range of cognitive abilities (Al-Kheraigi, 1989; Alquraini, 2011).

      Cultural values and beliefs may impact the development and delivery of services for 
disabled children. Specifically, Al-Jadid (2013) suggests difficulties associated with research 
related to the current conception of disabilities in Saudi Arabia include shame, a lack of 
understanding of the causes of disabilities, and a reluctance to use the term disability, in 

---PAGE 3---

attempts to protect individuals and their families from potential stigma. In some cases, 
traditional and less scientific views regarding the range of abilities and needs (Alqahtani, 
2012; Ravindran & Myers, 2012), can impede early diagnosis and intervention. One of the 
most challenging issues encountered by experts, families, and policy makers, is the growth in 
the number of individuals being diagnosed with autism spectrum disorders (ASD).

      Similar to other socially constructed limiting conditions, individuals with ASD require 
special supports and services. Students with autism can exhibit "communication and language 
deficits, cognitive disorders, sensory processing deficits, and stereotyped behavior" (Webber 
& Scheuermann, 2008, p. 3). Therefore, in the current environment in the KSA, providing 
accommodations, services, and the necessary treatments can be demanding and stressful for 
family members (Zeina, Al-Ayadhi, & Bashir, 2014) and service providers (Al-Jadid, 2013).

      Not only families, but, special education professionals encounter unique challenges 
associated with the current understanding and provision of services related to autism (Taha & 
Hussein, 2014). In addition to the ongoing search for causes of autism, the controversy over 
treatment options, and the range of services provided to individuals with autism have sparked 
many heated debates. There is a continuing disagreement over whether the treatment options 
are worthy of investment, and whether healthcare companies should cover the full range of 
treatments for individuals with autism. Specifically in the United States, there are debates 
about whether health care companies should pay for medical coverage for disabled 
individuals, the effectiveness of medications and other treatment options, and the specific 
causes of autism; while third world countries still struggle with more basic issues of services 
for individuals with autism (Taha & Hussein, 2014). This paper identifies issues related to the 
diagnosis of autism and provision of services for individuals diagnosed with autism in the 
Kingdom of Saudi Arabia. Additionally, we describe how services for individuals with autism 
have been viewed by those in the field of special education within the Saudi context.

      Despite its status as a relatively new field in Saudi Arabia, special education services 
have improved in the last decade. This article examines how the improvements have 
specifically affected individuals with autism. To provide the necessary context, we begin with 
a brief description of Saudi Arabia, highlighting the major social, political, and geographical 
aspects of the country. Next, we examine how autism is understood and defined in Saudi 
Arabia and how this definition impacts the ability of government agencies to provide the 
necessary services for individuals with autism. To understand the challenges that government 
agencies face in Saudi Arabia, a historical overview of the improvements that have been 
made, provide a context for the current state of available services for individuals with autism. 
We explore and critique the services available to individuals with autism in Saudi Arabia, 
providing insights into the pace of service development. Finally, we make recommendations 
based on the current knowledge and within the contextual limitations of the Kingdom of Saudi 
Arabia.

      Autism is characterized by differences in social-emotional reciprocity such as in back 
and forth conversation, limited sharing of emotions, interests, affect and response, and the 

---PAGE 4---

apparent absence of initiation of social interaction. Children with autism may also experience 
differences in motor coordination, intellectual disability, attention, and physical health issues 
such as gastrointestinal disturbances and sleep disorders (American Psychiatric Association, 
2013).

Saudi Arabian Context

      The Kingdom of Saudi Arabia is located in Western Asia in the Middle East and 
occupies approximately 80% of the Arabian Peninsula between the Persian Gulf and the Red 
Sea. It is bordered by Jordan, Iraq, Kuwait, the Persian Gulf, Bahrain, Qatar, the United Arab 
Emirates (UAE), Yemen, and Oman. It is populated by over 33 million people (United 
Nations, 2017), and despite its immense oil wealth still "faces enormous problems of access to 
health care" (Al-Salehi, Al-Hifthy, & Ghaziuddin, 2009, p. 341; Salhia, Al-Nasser, Taher, Al-
Khathaami, & El-Metwally, 2014).

      Due to inconsistent availability of health and specialized care in developing countries, 
many conditions are often overlooked that would typically be identified in developed 
countries (Salhia et al., 2014). This can be attributed to several factors, including a limited 
availability of services, inexperience with identification, lack of exposure to specific 
conditions, and a "lack of appropriate training among in professionals" (Al-Salehi, Al-Hifthy, 
& Ghaziuddin, 2009, p. 345).

Beliefs of Causes

      According to survey results reported by Almana, Alghamdi and Al-Ayadhi (2017), the 
majority of Saudis have heard about autism and have some general knowledge of it. Their 
results indicated that the Saudi community paid less attention to the organic causes of autism, 
as they believe it to be a psychiatric process. Only a few identified pregnancy complications 
as the cause, and most believed that with proper intervention, children with autism could 
outgrow it.

      Research supports an association between autism and parental age, as parental age 
increases the risk of having a child with autism increases (Salhia et al., 2014). Delayed speech 
is the first noted characteristic among children diagnosed by child psychiatrists, and speech, 
behavioral, and pharmacological therapies are the most used therapeutic interventions for 
Saudi children diagnosed with autism (Al-Zaalah, Al-Asmari, Al-Malki, A-Shehri, & Al-
Moalwi, & Mostafa, 2015).

      While most Saudi people have some general knowledge of autism, there is much 
confusion surrounding its organic causes. Since the Department of Special Education and 
Saudi Arabian government are ensuring students with disabilities receive special education, it 
is important that more awareness about autism be widely disseminated to ensure more 
students receive special education services and parents receive necessary supports.

---PAGE 5---

Prevalence

      While exact figures are not available, anecdotal reports suggest an increase in the 
prevalence of autism in Saudi Arabia. One recent report estimated that there were 42,500 
confirmed cases of autism in 2002 and that many more remained undiagnosed (Al-Salehi, Al-
Hifthy, & Ghaziuddin 2009, p. 341).

      Based on a sample of 49 consecutive referrals to a teaching hospital in Riyadh, Saudi 
Arabia in an early prevalence study, Al-Salehi, Al-Hifthy, and Ghaziuddin (2009), determined 
males outnumbered females by a ratio of 3 to 1, using the 1994 DSM criteria for the diagnosis 
of autism. Additionally, they reported that age of onset was likely before 3 years of age, 
however, they were not able to substantiate this assumption due to limited available 
information. They did note that females were older when evaluated. A more recent systemic 
review by Salhia and colleagues (2014) reported prevalence rates that ranged from 1.4 to 29 
per 10,0000 people in the region. In a review of literature from member countries of the Gulf 
Cooperation Council (GCC) in the Middle East, which includes the KSA, Kelly et al., (2016) 
reported lower prevalence rates when compared to western countries, however, the 
discrepancy may be due to underdiagnosis and reporting in Saudi Arabia (p. 160).

      The GCC regional prevalence estimates differ from those reported by the Center for 
Disease Control and Prevention which indicate that in the United States, 1 in 68 or 14.7 per 
1,000 children aged 8 years or older have been diagnosed with autism. Gender studies indicate 
that 1 in 42 boys and 1 in 189 girls have been diagnosed with ASD (Li, Fallin, Riley, Landa, 
Walker, Silverstein, & Hong, 2016).

Support for Autism

      In 2004, the Saudi government began developing special education services by 
investing in research and encouraging universities to open special education programs to train 
professionals capable of providing services to those in need (Prince Salman Center, 2004). 
While this has been the case, all disabled individuals have not received the same levels of 
attention in Saudi Arabia, with those diagnosed with autism among them. In fact, in 1993, 
private individuals initiated the first program for individuals with autism (Al-Aoufi, 2011, p. 
9). It was not until 2004 that the government started its first program serving those diagnosed 
with autism.

      Within public schools in Saudi Arabia, the special education department has opened 
special schools which care for children diagnosed with mild to moderate intellectual 
disabilities. Other students included in the program include those with autism and hearing 
impairment (Aldabas, 2015). Such schools provide students with special education services 
and resources. Moreover, the government has passed several laws to ensure that disabled 
students receive an appropriate and free education (Aldabas, 2015). Although serving 
individuals diagnosed with autism has recently received more attention, it remains a major 
challenge the government, special education professionals, service providers, and families 
must address.

---PAGE 6---

      With the initiation of government-sponsored programs, policy makers created an 
avenue for families to receive services for their autistic children with centers specifically 
designed to provide diagnosis, intervention, and support. As demonstrated in the literature, the 
impact and importance of early diagnosis and intervention is critical for children with a 
variety of disabilities, including autism (Corsello, 2005). When detected at an early age, early 
interventions that address the symptoms and characteristics of autism are incredibly fruitful. 
Al-Aoufi (2011) states, "Children with developmental delay who are exposed to early 
intervention programs are more likely to gain more coping strategies than later in life" (p. 72). 
Early intervention programs are useful for providing both diagnoses and strategies that 
promote a more positive long-term outcomes for children.

Benefits of Governmental Programming

Early Intervention

      One of the Saudi government's most significant efforts related to autism, was to create 
early intervention programs. Recognizing the importance of early intervention, the Saudi 
government established intervention programs to help both individuals with autism and their 
families. As with any new initiative, there are supporters as well as critics. Supporters applaud 
the interdisciplinary nature of services, early diagnostic services, and benefits of parental 
training, which are addressed in the following sections.

Interdisciplinary service

      Those in favor of early intervention programs for individuals with autism tout their 
interdisciplinary nature. Al-Aoufi (2011) notes, "Early intervention is multi-disciplinary 
service, where more than one intervention approach or service could be provided for the child 
and the family as required" (p. 71). The interdisciplinary nature is meant to address the range 
of abilities related to autism by providing, "psychological services, diagnosis and assessment, 
consultations, transportation, family training, occupational therapy, speech therapy, dietary 
therapy, medication therapy, behavioral modification therapy and play therapy" (p. 71).

Diagnosis

      The early intervention programs established by the Kingdom of Saudi Arabia also 
provided increased access to diagnostic services. The availability of these services ensures the 
detection of a range of disabilities at an early stage. Once a diagnosis is made, professionals 
can begin to develop an individualized strategy designed to support the individual's unique 
needs. Proponents are hopeful the government will expand its programming to address the 
needs of more individuals and disabilities across all parts of the country (Alotaibi & Almalki, 
2016; Alquraini, 2011). As proposed by Al-Aoufi (2011), the Saudi government must 
continue to establish additional special education programming that would provide services to 
individuals with special needs in general, and individuals with autism in particular (p. 50).

Parent training

      Another beneficial service related to autism provided by the Saudi government is that 
of parent training. Supportive of findings from Alotaibi and Almalki (2016), who reported 

---PAGE 7---

parents' primary concern was a need for information, early intervention programs in Saudi 
Arabia contain a component to help train parents of children with autism to address their 
range of abilities and develop strategies to support their children's development. These 
programs also provide children with therapies, "to remedy current developmental problems, in 
order to stop its re-occurrence and to provide the families with an action plan in order to help 
these children" (Al-Aoufi, 2011, p. 7). Interestingly, the 80 parents who participated in the 
Alotaibi and Almalki (2016) study, rated a need for information greater than a need for 
support or community services.

Challenges of Governmental Programming

      As previously mentioned, there has been some criticism of the development of 
government-sponsored services for individuals with diagnosed conditions. Criticism focuses 
on a lack of access to services, limits on the number of individuals that can be served, delays 
in diagnosis, and limited knowledge which are addressed in the following sections.

Lack of Access

      While many individuals have been able to take advantage of government-sponsored 
diagnostic services, others have been critical of the limits associated with these services 
related to autism. Al-Masoud (2011) points to an inability to accurately diagnose autism due 
to classroom teachers and parents' inability to recognize the hallmark characteristics of ASD. 
Additionally, even though efforts have been made to provide diagnostic services through early 
intervention programs, the process can still be confusing which limits its effectiveness. 
Moreover, with the increasing number of individuals being diagnosed with autism, additional 
challenges can be anticipated.

Limited Availability of Services

      Unfortunately, once an individual is assessed and diagnosed, there is no guarantee 
services will be available. Al-Aoufi (2011) reports, "The number of individuals 
accommodated is minimal compared to the existing number of individuals with autism" (p. 
51). Despite the best intentions of policy makers, limited access to services has posed a 
challenge and has been one of the major barriers for early intervention programs (Alotaibi & 
Almalki, 2016; Salhia et al., 2014). With the increasing numbers of people diagnosed with 
autism and continuing issues of access to services, there is a need to expand capacity and 
expertise to provide services to ensure the success of special education intervention programs 
for individuals with autism and broaden their reach.

Delayed Diagnosis

      As previously noted, the earlier a diagnosis is made, the more positive the outcomes, 
due to professionals' abilities to identify key issues and develop a clear plan of action to 
mitigate or eliminate the negative impacts. Seif Eldin, Habib, Noufal, Farrag, Bazaid, Al-
Sharbati, Bader, Moussa, Essali, and Gaddour (2008) describe autism and the long-term 

---PAGE 8---

challenges delays in diagnosis can cause. They posit these delays "in many Arab countries has 
led to excess impairment and burden to affected children and their families" (p. 281).

      In addition, early intervention services can also be complicated by inaccurate 
diagnoses. Autism is often misdiagnosed in Saudi Arabia when compared to other physical 
and mental conditions (Alqahtani, 2012, p. 15) which can lead to delayed or ineffective 
interventions. Additionally, the diagnosis process is not always clear. Al-Aoufi (2011) reports 
that, "participating mothers expressed specific concerns about the confusion over diagnosis" 
(p. 291). Such confusion can also lead to delays in the provision of services, resulting in less 
than optimal progress for children diagnosed with autism.

Limited Knowledge

      A lack of informed public regarding autism can be challenging and have adverse 
consequences. Alqahtani (2012) asserts that, "The lack of information about autism among 
parents may contribute to a failure to provide appropriate treatment and help" (p. 15). With no 
or even limited knowledge about autism, parents may rely on a cultural (i.e., unscientific) 
understanding of physical and mental disabilities. Frequently, a lack of information also leads 
to a reliance on informal treatments. For instance, Alqahtani reported that many of the females 
interviewed in his study believed the causes of autism to be cultural, resulting in treatments 
based upon cultural beliefs. In these cases, culturally-based treatments are viewed as the 
appropriate way to treat autism because of a lack of parental knowledge regarding autism. To 
these individuals, "Informal treatments are chosen because they are perceived as healing the 
source of symptoms rather than the symptoms themselves" (p. 21).

      Additionally, as is still the case in many western contexts, it is clear from the language 
used in the literature that the KSA still holds to a medical model of disability. Disabled 
individuals (Barclay, 2017) are still considered in need of medical intervention. Until social 
conceptions of the range of abilities within the disabled community are addressed, true 
inclusive approaches and alternative perspectives will have limited traction.

Limited Resources

      While government-sponsored intervention programs are purported to help educate 
families with individuals with special needs, a lack of available professionals in these 
intervention programs has been a major challenge. While professionals are supposed to 
provide support in this regard, Al-Aoufi (2011) found the "internet was the parents' first 
choice to obtain information about autism and its treatment" (p. 290).

      Finally, Al-Aoufi (2011) outlined additional challenges that face early intervention 
programs in Saudi Arabia. Such challenges included the (a) limited collection and use of 
accurate statistics on the number of individuals with disabling conditions, including those 
with autism; (b) shortage of experts and qualified professionals to develop effective services 
and the ability to work efficiently with individuals with disabling conditions; (c) limited 
programs for raising the general public's awareness about disabling conditions, their causes 

---PAGE 9---

and methods of prevention and remediation; (d) lack of local research within the disability 
field; and (e) the lack of an organized training and counseling program that offers education 
and support for families of individuals with disabilities.

External Obstacles to Governmental Efforts

      The shortcomings of intervention programs in Saudi Arabia have been identified and 
delineated, however there are additional factors that may play a role in the effectiveness of 
government-sponsored programs that are outside of its control.

Cultural Issues

      It is common for each culture to have its own response to unfamiliar conditions, 
disabilities, and diseases (Alqahtani, 2012; Zeina et al., 2014). Some within the Saudi culture, 
being less familiar with the causes of autism, have attributed autism to superstitious causes, 
which has impacted efforts to improve the quality of special education services. The beliefs 
and practices regarding the potential and treatment of individuals with autism are different 
from one culture to another and change over time (Ravindran & Myers, 2012). Culture 
influences key aspects of the diagnosis and treatment process and affects the likelihood that 
individuals seek help, what treatments to use, available resources, and relationships between 
families and professionals. Daley (2002) suggests the treatment approaches that work and are 
culturally accepted in the West may not be the same approaches accepted and used to treat 
children (or adults) with ASD in other parts of the world.

      In the West, potential causes of autism are identified based on science, and various 
treatments are available which include behavioral, cognitive, pharmaceutical, sensory, 
relational, vitamins, and diet therapy. However, in other cultures, the causes of autism might 
be still regarded as 'Karma, 'Allah's will,' or 'the will of God' which results in non-scientific 
treatments such as acupuncture and/or herbal medicine (Kelly et al., 2016; Ravindran & 
Myers, 2012).

Lack of Research

      Improvements in intervention programs require research exploring the effectiveness of 
these programs. In Saudi Arabia, a lack of research contributes to the lack of quality services 
provided to individuals with autism (Kelly et al., 2016). Al-Salehi and Ghaziuddin (2009) 
found that deterioration in the quality of services provided to individuals with autism can be 
attributed to an under-representation of topics such as autism, addressed in child psychiatry 
publications. The lack of research on ASD has created a major challenge in efforts to evaluate 
and improve the services provided to individuals with autism. With additional research, the 
government could generate accurate prevalence rates, analyze effective interventions, and 
provide suggestions for how intervention programs can be improved and expanded, thereby 
achieving their stated goal of improving outcomes for individuals diagnosed with autism.

---PAGE 10---

Recommendations

      The Saudi government has experienced challenges in providing supports and services 
to individuals diagnosed with autism. Despite recent efforts, there is a need for more research 
and improved services. Without research into the efficacy of supports and services, the ability 
to make evidence-based decisions and recommendations is limited. Research evaluating the 
system of supports and services can identify shortcomings of intervention programs and 
support new developments addressing the needs from those most closely involved.

      There is also a need for more investment in the recruitment and training of 
professionals to ensure that individuals with autism are receiving timely and appropriate 
services. Additionally, intervention programs can make use of new technologies to improve 
services. Creating a database of information regarding the characteristics, potential causes, 
available services for individuals with autism, and advice for parents whose children have 
been diagnosed or may be at-risk for autism, can help educate the general population about 
autism.

      The Internet has been useful in supplying information about other physical conditions 
and disabilities. Abo El-Soud, Hassan, Kandil, and Shohieb (2010) describe websites that "are 
especially developed for disabled persons. Some of these websites are e-learning application 
for the disabled people" (p. 56). Additional recommendations include the distribution of an 
"e-learning module that was developed to support library staff training in disability 
awareness" (p. 56). Technology would also be beneficial in this regard to facilitate training for 
both professionals and family members.

      Finally, to address the social construction of disability which underpins attitudes 
towards individuals diagnosed with autism and perpetuates conditions that serve to disable 
rather than enable, the KSA should adopt a more aggressive stance and promote inclusive 
environments and practices. Principles of Universal Design for both the environment 
(Iwarsson & Ståhl, 2009) and for learning (Rose & Meyer, 2006) should be adopted and 
implemented across the Kingdom, combined with an informational, social media blitz to 
increase understanding of the range of abilities that exist in society and how individuals can 
encourage full participation of all citizens.

Conclusions

      Despite the efforts of Saudi Arabian government-supported programs and the support 
such programs have provided to individuals with autism and their families, these programs 
still have a long way to go. Experts have criticized governmental programs for delayed 
diagnoses, misdiagnoses, limited availability of services, and a lack of knowledge of the 
general public. Despite the criticisms, anecdotally, government-sponsored intervention 
programs still provide some positive outcomes for those who are able to access their services 
and are worthy of praise. Addressing their shortcomings coupled with the adoption and 
encouragement of a more inclusive approach to the full range of abilities, will enhance the 
available services and subsequently improve outcomes for individuals diagnosed with autism 

---PAGE 11---

in Saudi Arabia and their families.

Mona F Sulaimani, PhD, Ohio University, Curriculum & Instruction Department of Teacher 
Education, Special Education. She holds a B.S. in Art Psychology from King Abdul-Aziz 
University; M.Ed. in Special Education - Early Childhood Intervention Specialist - from Ohio 
University; and Ph.D. Curriculum & Instruction in Special Education from Ohio University.

Dianne Gut, PhD, currently serves as the Assistant Chair of the Teacher Education 
Department. Her primary research interests include social and academic interventions for 
students with disabilities, and mentoring for preservice and in-service teachers. She holds a 
B.S. in Education from Cleveland State University; M.Ed. in Special Education from Notre 
Dame College of Ohio; and a Ph.D. in Special Education and Learning Disabilities from the 
University of North Carolina at Chapel Hill.

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impairment and disability: Theoretical, ethnohistorical and methodological 
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Disability Research.

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and disability: A review and focus on autism. Journal of Child and Family Studies, 21, 
311-319. doi:10.1007/s10826-011-9477-9

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(2014). Systemic review of the epidemiology of autism in Arab Gulf countries. N 
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Seif Eldin, A., Habib, D., Noufal, A., Farrag, S., Bazaid, K., Al-Sharbati, M., Badr, H., 
Moussa, S., Essali, A., & Gaddour, N. (2008). Use of m-chat for a multinational 
screening of young children with autism in the Arab countries. International Review of 
Psychiatry, 20(3), 281-289.

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disability in Jeddah, Saudi Arabia. Pediatric and Perinatal Epidemiology, 16, 61-66.

Taha, G. R., & Hussein, H. (2014). Autism spectrum disorders in developing countries: 
Lessons from the Arab world. In V. B. Patel, V. R. Preedy, & C. R. Martin (Eds.), 
Comprehensive guide to autism (pp. 2509-2531). Springer New York.

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  Autism in Saudi Arabia: Present Realities and Future Challenges by Mona F. 
Sulaimani & Dianne M. Gut is licensed under a Creative Commons Attribution 4.0 
International License. Based on a work at https://rdsjournal.org. Permissions beyond the scope 
of this license may be available at https://www.rds.hawaii.edu.
      
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REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Research Article
Playing with Normalcy: A Disability Material Culture Analysis
Fady Shanouda, PhD & Karen K Yoshida, PhD
University of Toronto, Dalla Lana School of Public Health
Toronto, Canada

Abstract: We recast a toy figure as a cultural agent of various interlocking and hegemonic 
discourses, and in particular, explore how normative discourses are reflected in material 
objects. We suggest that the Toy Gymnast represents and reinforces these discourses and 
therefore influences how children learn that normative bodies are desirable.

Keywords: Disability; Toy; Childhood

Introduction

      We play with them and learn from them, but as pedagogical artifacts, toys are much 
more than just playthings. In this paper, we explore the significance of toys in educating 
disabled children about their bodies and their agentic capacities. We explore the role of toys 
as cultural and pedagogical agents of interlocking and hegemonic discourses. In particular, we 
focus our analysis on the normative and eugenic discourses in a single child's toy - the Toy 
Gymnast. Through a historical analysis of the representation of "ideal/normal" bodies in this 
toy, we illuminate how these discourses infiltrated a variety of cultures and continue to be 
embedded in everyday and commonplace objects. In exploring disability in an object often 
unassociated with experiences of difference, we seek to demonstrate the potential and 
complexity that a Disability Studies perspective provides to the analyses of everyday objects. 
Here, we follow Ott's (2014) claim that disability material culture is found everywhere - and 
thus, in everything.

      During the course of our research in 2011, we discovered the toy among a collection 
of materials from one participant (who we have given the pseudonym Lynn) who was part of 
a larger project on the experiences of Canadian polio survivors1 (Yoshida & Shanouda, 2015; 
Yoshida, Shanouda & Ellis, 2013). In attempting to preserve memories of their time in the 
hospital or the rehabilitation center, participants, in addition to keeping iron braces and other 
medical materials, also intentionally kept items that might be similar to those collected and 
stored by non-disabled adults: stuffed teddy bears, porcelain dolls, bronzed baby shoes, 
photos of their younger selves, and childhood paintings and writings. We consider the relation 
between experiences of disability, race, gender, and heteronormativity and these childhood 
objects, which are often considered devoid of disability.

      The Toy Gymnast (Figure 1), was a gift Lynn received when she was approximately 
ten years old and seeking treatment for the effects of polio in the hospital during 1949-1950. 

---PAGE 15---

Figure 1. The Toy Gymnast, circa 1940s. Photo credit, Karen Yoshida, 2009.
 

What follows is a detailed description we developed of the Toy Gymnast:

Between two thin steel A-shaped frames - with another thin steel bar between them 
(resembling a swing set) hangs a white, plastic, male figure. His hat, hair, face, shirt, 
pants, and shoes are painted on. His hat is red and sits flat on his head covering the 
majority of his blond hair. His arched eyebrows are spaced perfectly equidistant; his 
brown/black eyes are open. His cheeks are painted rosy and his lips are pursed. His 
chest is covered by a sleeveless shirt with a low neckline. The majority of the figure is 
made up of his legs, painted in blue, and which deceivingly start under the figure's 
chest. The ends of the plastic figure's legs depict shoes, painted in red. The figure is 
symmetrical, but disproportionate. A small mechanical winder is attached to the 
bottom of one of the A-shaped frames. When wound, the figure spins around the bar 
like a gymnast.

Lynn describes her time as a child playing with the object:

I'm not sure who gave me that [the toy object] but it was given to me when I was in 
the hospital. And I used to, you know, just play with it quite a little bit. And I don't 
know; I have no idea who gave it to me. Cause I had so many things given to me at the 
time. But it was, you know, something I used to play with. There's a little bar at the 
top; you can make him go around that if it's lower, or whatever. Sometimes he just 
sways; sometimes he goes over the bar and things like that. That was one of the things 
that was given to me at the time (Yoshida & Shanouda, 2015; Yoshida, Shanouda, & 
Ellis, 2013).

---PAGE 16---

      Although she was given many things in the hospital, in response to our request Lynn 
selected this item as one of five of the most important objects to her during this time. The 
other items included a pair of salt and pepper shakers, a bride and groom doll set, and a couple 
of other dolls. The fact that she retained the gymnast for over 60 years confirms its 
significance as a cherished material object and as a vehicle for recalling memories of her time 
in the hospital, experiences of pain/triumph and fear/joy.

      Her experiences in the hospital as a disabled person are tied to Lynn's other identities 
at the time, as a young, white, woman from a middle-class family. Her disability is constituted 
in relation to those experiences, and to the materials around her. As Ott (2014) argues, 
"disability depends on the person, the environment, and the activity" (p. 121). Therefore, in 
analyzing this disability material culture object, we are cognizant of how the toy represents 
dominant gendered, racialized, and heteronormative discourses. We suggest that these 
discourses were powerful forces that contributed to Lynn's knowledge of herself and that 
other participants also learned about themselves through their interactions with toys and other 
materials from their childhood. However, the toys also had the effect of teaching children 
about their agentic abilities to act upon the material objects around them.

Disability Material Culture

      We approach material culture from the perspective of James Deetz (1996), an 
American historical archaeologist. To Deetz, material culture is not culture per se, but 
product. Deetz (1996) states that:

Culture is socially transmitted rules for behaviours, ways of thinking about and doing 
things... All such behaviour is reflected in subtle and important ways in the manner in 
which we shape our physical world (p. 35).

      Material culture is usually linked to the study of artifacts, however, Deetz (1996) 
advocates for a broader definition of material culture, emphasizing how our 'world' is the 
product of "our thoughts, that sector of our physical environment that we modify through 
culturally determined behaviour" (p. 35). This definition of material culture is more 
encompassing and allows us to include everyday objects. According to Deetz (1996), objects 
such as a common pin, ceramic dishware, headstones, cuts of meat, the scientific breeding of 
livestock, all of these things are enacted according to culturally derived ideals.

      Deetz (1996) also includes our bodies and language as part of material culture. With 
respect to bodies, material culture is interested in all aspects of kinesics or human motion, for 
example, parades, dancing, work, etc. For Disability Studies scholars, this is especially 
significant as the body is so often the site where disability is read. However, by including the 
physical-social environments that disabled people live in, we reframe disability not simply as 
an individual experience, but also a socially produced phenomenon. It is in the interaction 
with everyday objects, including the kinesics of the body, that disability is produced.

      McVeigh (1996) adds to Deetz's (1996) conceptualization of everyday objects by 

---PAGE 17---

arguing that the insidiousness of the everyday object is in its ubiquity. McVeigh (1996) refers 
here to the gendered messaging communicated to women in the everyday 'cute thing' in 
Japanese culture, which he argues is pervasive. McVeigh's (1996) conceptualization of 
cuteness as everywhere and, therefore difficult to locate and unpack is similar to the 
conditions that surround the concept of normalcy. Normalcy, as the prototypical condition of 
the human body and experience, is omnipresent; so much so, that to be normal is considered 
an optimal and attainable reality. The illusion of normalcy, that it is within one's grasp, is one 
of the most powerful and insidious qualities of the concept. This message, much like gendered 
messaging described by McVeigh (1996), is uninterrupted and communicates beliefs about 
bodily ideals in everyday objects, such as toys.

      Finally, the materials around us, the things we interact with, also have an impact on 
our understanding of the world. As Brown (2001) suggests, objects "...circulate through our 
lives, we look through objects (to see what they disclose about history, society, nature, or 
culture-above all, what they disclose about us) ..." (emphasis in original, p. 4). Like windows, 
objects allow us to look through them to understand something about what is happening 
around us, and also maybe within us. Brown (2001) also argues, however, that we often fail to 
contend with the 'thingness' of objects, until they fail to work or operate as intended. Still, in 
breaking, fracturing, or disintegrating, things reveal themselves to us - remind us of their 
value and incite us to consider our connections to them in what Brown (2001) calls, "subject-
object relation" (p. 4). We contend that such reminders help us to understand how things act 
upon us, and how we act upon and with them.

      Examinations of disability material culture exist in the extant literature. Take for 
example, Ott's (2002) examination of the history of prosthetics in the U.S. and halifax's 
(2014) lyrical exploration of wearing/experiencing boots with lifts - describing it as, "the 
particular embodiment, that disability is embodied consciousness" (p. 7). Consider also 
Parrott's (2005) exploration of the objectification and agency of decorating bedrooms and 
self-decorating through clothing and accessories of patients in a psychiatric unit. Both 
Yenika-Agbaw (2011) and Narduzzi (2013) explore how seemingly innocent representations 
of disabled and non-disabled characters in children's literature are imbued with ableist 
discourses that privilege normative bodies often at the expense of disabled and non-normative 
bodies. There have also been large scale exhibitions of disability material culture. Whatever 
Happened to Polio? (n.d.), is a multimedia exhibition that tells the story of polio in the United 
States, including the impact of the disease on American society. Also, Out from Under, is an 
exhibit of 13 disability material culture objects, which present examples of disability struggle 
and resistance throughout Canadian history from the perspective of disabled people (Frazee, 
Church, & Panitch, 2016). This exhibit is now part of the permanent collection in the 
Canadian Human Rights Museum in Winnipeg, Manitoba.

      Our examination, in addition to contributing to the extant literature, also invites 
scholars to consider objects often unassociated with disability. We hope this close 
examination, a treasure hunt for disability, will foster deeper analyses of the underlying 
political and cultural projects that constitute disability as unwanted, incomplete, and 

---PAGE 18---

disposable. While we could give credit to these ideas to a number of historical events, 
including the Industrial Revolution, the World Wars, and other contemporary global events, 
we suggest that the hegemonic notion of normalcy, which constitutes disability as inferior, is a 
result of the international reach of the eugenics project.

The Construction of Normalcy

      The eugenic project reached far beyond the brick and fenced walls of the concentration 
camps in Germany during the Second World War. Snyder and Mitchell (2006) remind us that 
the eugenics project was international in scale, it's racist and ableist ideologies stretching far 
back into the 18th century and whose affects we continue to experience today. In addition to 
state practices that enforced eugenic ideologies, including the mass institutionalization and 
sterilizations of those deemed 'unhealthy' and 'feebleminded' and the eradication of hundreds 
of thousands of disabled people, the eugenics project was also a cultural project that 
constituted the characteristics, measurements, and even possibilities of a healthy, active, and 
productive human body. This normal body, supported by pseudo-science and a complex 
system whose goals were carried out by its advocates (Davis, 2006), influenced the 
construction and manufacturing of everyday objects and materials. The effort to eradicate 
difference throughout many Western societies in these first decades of the 20th century meant 
that many cultural objects were embedded with normative and hence eugenic ideologies 
(Cogdell, 2004).

      In relation to children, Smith (2004) argues that eugenics entered the home and the 
early days of a child's life through the capturing and categorizing of baby pictures and the 
'family album.' Sir Francis Galton (as cited in Smith, 2004), the man who coined the term 
'eugenics,' developed two family albums for parents to document everything about the 
family, including a specific section on the 'ailments and illnesses' of the family. Smith (2004) 
writes that Galton considered the "rise and fall of families [to be intricately tied and 
statistically important to] the rise and fall of the races" (Smith, 2004, p. 363). While eugenics 
may have entered the home through the organization and classification of the family album, it 
stayed current and influential by infiltrating the child's toy chest. Ott (2014) describes how 
toys and baby books are, "powerful eugenic records that reinforce an aspiration to 'normalcy' 
and provide parents with ways of monitoring their children's development and physical 
capabilities" (p. 132). The toy specifically, she argues, "can be read as reinforcing cultural 
beliefs about the undesirability of diversity in bodily difference" (Ott, 2014, p. 132). We can, 
therefore, classify the toy, any toy, as a disability material culture object. These toys are 
rooted in eugenic ideology: eliminate 'defectiveness' and ensure control over the evolutionary 
process.

The Toy Gymnast

      The following is a disability material culture analysis of the Toy Gymnast. We recast 
this object as a cultural agent of various interlocking and hegemonic discourses, and in 
particular, explore how normative discourses are reflected in material objects. We suggest that 
the Toy Gymnast represents and reinforces these discourses and is therefore, one influence on 
how children learn that normative bodies are desirable. We trace the toy's origins and its 

---PAGE 19---

connection to national and international stages, the circus, the freak show, and the Olympics 
to demonstrate how commonplace and everyday objects are imbued with normative and 
eugenic discourses. Finally, and without negating the problematic discourses represented in 
the toy, we consider how it might also have helped children cope with their new 
circumstances in the hospital while teaching them about their capacity to act upon and shape 
the world in ways that could benefit them.

Object's origins

      To start accumulating some of this toy's history, we began by searching for academic 
articles or other academic texts that describe the history of the toy; no such source was found. 
We then searched for other texts that describe the history of the toy; again, to our knowledge, 
no such document existed. However, in our online search for secondary sources we 
discovered two patents for toys similar to the Toy Gymnast. Moreover, we consulted with 
other sources of information and found further connections to the toy at The Strong National 
Museum of Play (Hogan, 2011). The curator's interpretations at The Strong and the two 
patents we discovered help to tell a speculative history of the toy.

Figure 2. Crandall's The Acrobats, circa 1867. Courtesy of The Strong, Rochester, New York 
(Hogan, 2011).

 

Image Description: Four small wooden figurines stacked on top of each other, three figures on 
the bottom row and one on the top row, much like a cheerleading pyramid. Beside the 
pyramid of figurines is a wood box where they are stored with the text, "Crandell's Building 
Blocks. Crandell's Great Show, THE ACROBATS. Full of Fun and Frolic, and Most Brilliant 
in Costume. Will exhibit at the house of the purchaser Afternoon and Evening. NO 
POSTPONEMENT ON ACCOUNT OF WEATHER MATINEE EVERY MORNING. 
Admission Free, Children Half-Price."

---PAGE 20---

      Hogan (2011) provides us with a starting point to understand the fascination with 
acrobatic and gymnastic toys. She suggests that these toys originated as products meant to 
represent circus acts and trapeze performers. She argues that Charles M. Cardnall, the 
inventor of "The Acrobats" (Figure 2), was inspired by the circus acts that were an extremely 
popular form of entertainment in North America and Europe throughout the later part of the 
18th and early 19th centuries (Hogan, 2011). 'The Acrobats' are miniature wooden figurines 
meant to stack on top of each other much like a cheerleading pyramid. While this object has 
no physical resemblance to the Toy Gymnast, it does represent both acrobatic and gymnastic 
talent, which is evocative of the object under study. More importantly, 'The Acrobats' provide 
a reasonable explanation for the fascination and popularity of these toys, the circus.

      The first incarnation of Jacob Schwennesen's toy invention - a toy similar to the one 
Lynn was gifted - was invented in 1872 (see Figure 3). The figure in this invention was 
connected to two wooden sticks by a short, loose string, which was threaded between the 
figure's hands. Opposite from the figure, the player would squeeze the ends of the sticks, and 
the figure would then spin around the string in whimsical and silly ways. This toy, much like 
Cardnall's 'The Acrobat,' was meant to portray the capabilities of a gymnast.
Figure 3. The Patent Drawings for Jacob Schwennesen's Toy Invention, circa 1872 
(Schwennesen, 1872).
 

Image Description: A patent drawing of a small figure attached by a string to two wooden 
sticks, which when squeezed force the figure to spin around on the string. The drawing 
includes the text, "JACOB SCHWENNESEN. Improvement in Toys. No. 127, 927. Patented 
June 11, 1872. Witness [signature of two witnesses] and Inventor [signature of three 
inventors]."

---PAGE 21---

      Mechanical versions of the toy were not far behind. In fact, the patent for H. L. 
Brower's first automatic toy was in 1873-just one year after Schwennesen's original patent.

Figure 4. The Patent Drawings for Henry. L. Brower's Invention, circa 1873 (Brower, 1873).
 

Image Description: A patent drawing of a small figure attached by a string to two wooden 
sticks, which when squeezed force the figure to spin around on the string. The drawing 
includes the text, "H. L. Brower. Automatic Toys. No. 140,883. Patented July 15, 1873. 
Witness [signature of two witnesses] and Inventor [signature of two inventors]". This version 
includes a more stable base, and a widening mechanism.

Brower (1873), the inventor, describes the toy:

I make [sic] a toy image of an athlete with a bar capable of being revolved and 
oscillated and combine therewith clock-work and peculiar gearing which gives the bar 
such motions as [sic] induces a variety of fantastic movements. The figure if formed 
with a catch at the junction of one or both the arms with the body, to prevent an 
unnatural backward movement. The figure actuated by the mechanism performs partial 
or complete revolutions alternately in opposite directions around the bar under 
conditions which cause the movements to vary irregularly at nearly or quite every 
oscillation (p. 1).

---PAGE 22---

      In addition to explaining how the toy works, what is especially fascinating about 
Brower's (1873) explanation is that he notes how the new mechanism now produces a more 
realistic representation of human movement. The toy figure no longer moves in fantastical 
ways; 'unnatural backward movement' has been eliminated. One must wonder why a toy 
would require such restrictions. It suggests that the toy is more than a plaything, rather, that 
meaning and knowledge are being conveyed and communicated between the player and the 
toy.

      In addition to limiting the toy's movements to represent more humanist features, the 
toy's physical appearance also shifted during this time to closely resemble a human boy/man. 
We credit this shift to the changes in manufacturing material. With the introduction of plastics 
and specifically celluloid (between 1870-1920) we found that figures became more human 
like and representative of ideal human forms (Figure 5).

Figure 5. Antique USSR Child Mechanic Celluloid Toy Gymnast, circa 1950s. Courtesy of 
Global Antiques (n.d.).
 

Image Description: Between two thin steel A-shaped frames - with another thin steel bar 
between them (resembling a swing set) hangs a white, plastic, male figure. A small 
mechanical winder is attached to the bottom of one of the A-shaped frames. When wound, the 
figure spins around the bar like a gymnast.

      In Figure 5, the body is now more refined, with slightly bent arms at the elbow, more 
refined legs showing kneecaps and calf muscles; the face is given depth with sculpted cheeks 
and nose. The body depicted here is a well-formed, strong, white, male, gymnast. Although 
there are slight variations between Lynn's Toy Gymnast and the toy in Figure 5, they are still 

---PAGE 23---

very similar in style and composition. However, Lynn's Toy Gymnast was mostly likely 
manufactured in Japan during its occupation by the U.S. in the 1940s (1945-52). The toy in 
Figure 5 was manufactured in Russia during the 1950s. After the 1930s we found that many 
figures had the same or similar features and that they all began to represent a single ideal body 
type: male, white, strong, and symmetrical. The toys all had perfectly shaped or sculpted 
arms; smaller higher waists; larger, further apart open eyes; and, proportional long legs. We 
found this to be an international phenomenon with objects discovered from around the world 
all having the same or similar features.

      There are versions of the Toy Gymnast still sold today. At the time of publication, 
Hasbro has a version of the toy called, 'Fantastic Gymnastics Game.' This version allows the 
player to mechanically swing the figure back and forth on a bar and then release the figure in 
an attempt to 'stick a landing' on a velcro mat. This toy more accurately depicts the 
movements of modern or contemporary gymnasts in popular arenas, like the Olympics.

Playing with Normalcy

      Any examination of the Toy Gymnast must start with the circus. In addition to being a 
major source of entertainment in the late 18th and 19th centuries, the circus also embodied all 
the curiosity and potential of human capacity that marked this time in history (Assael, 2005). 
Much of this curiosity was about the body itself, it's potential strength and flexibility and its 
limitations or exceptionalities. Visitors to a circus would explore the human strength and 
agility of gymnasts, acrobats and contortionists and at the same time wonder, gawk, and stare 
at the fat, disabled, hairy, tall, and deformed bodies of the freak show. Freak shows were, after 
all, a major part of many famous circuses, such as those developed by P.T. Barnum (Garland 
Thomson, 1996). The circus and freak show, in sharing the same space, under the same big 
tent, offered opportunities for comparison and reinforcing of notions of ideal versus undesired 
bodily traits. The significance of the circus in relation to the freak show reinforces our thesis 
that the gymnast, and its representation in the toy, embodies hegemonic normative and 
eugenic discourses that constitute the normative body as desirable.

      These normative discourses, embedded in the plaything, transform into expectations. 
This has both real and symbolic impact on the player and one's understanding of disability, 
movement, and capacity, especially when one is playing with such a toy in the hospital. Varga 
and Zuk (2013), argue that books, toys, and other pedagogical tools have the ability to shape a 
player or child's experience and understanding. The Toy Gymnast depicted an ideal human 
figure that symbolically perpetuated and promoted normative expectations about the body and 
movement (Davis, 2006). The toy, as a symbolic representation of normalcy, shaped the 
participants' desired body. This is reinforced given the location, the proximity of the toy to 
the hospital, which is often a site for practices of normalcy.

      We include in these practices all of the efforts undertaken to correct bodies effected by 
polio: surgical procedures, the casting of limbs, fusing of ankles, the use of hot wool towels 
which preceded the stretching of muscles (an often-painful experience as recalled by 
participants), and the rubbing of cocoa butter onto paralyzed legs to promote greater 

---PAGE 24---

movement. Lynn and her family, like others, subjected themselves to various procedures to 
achieve or try to achieve normalcy:

I was walking with two braces and the crutches, but I was walking [...]. Now from 
that [10 years old] until I was about 18 or 19, I think probably [...] - in and out of [the 
hospital]. And they did umpteen surgeries there (Yoshida & Shanouda, 2015; Yoshida, 
Shanouda, & Ellis, 2013).

      Her use of the word "umpteen" meaning "countless" or "innumerable" suggests that 
corrective surgeries became a commonplace and regular practice for Lynn and her family. In 
other parts of her interview, she recalls the many visits she made to the hospital throughout 
her young life. Our suggestion of the real and symbolic impact of normative discourses is 
especially revealing in Lynn's case - however, this should not be considered anecdotal 
evidence. Of the 36 participants interviewed for our larger study, 24 of them had at least one 
surgery, with 11 participants describing having to undergo multiple corrective surgeries as 
children. Certainly, many of the surgeries were necessary; however, participants also 
described some of the surgeries as 'utter failures,' 'experiments,' and as 'unwanted.'2

      Moreover, the hospital, as the site where play was taking place, was not a welcoming 
space for bodies of difference. Lynn articulates this well. When asked if they traveled by 
wheelchair in the hospital, Lynn reveals the extent to which walking was not simply the most 
desired outcome, but the expected one:

No, no. No wheelchairs. I was never, ever put in a wheelchair. They didn't even have 
such things, in the hospital. Maybe they did for transporting. But see you were 
expected to walk. If you didn't walk, you were in bed. And that was it. [...] And I 
remember getting up on my braces the first time and standing on crutches being pretty 
proud of myself. And my Mom and Dad just almost in tears seeing me there. But 
that's what it was. I mean you either walked or you didn't do anything, you were in 
bed. But there was NEVER a thought of anybody using a wheelchair. At least when I 
was there; now that was the way we were (Yoshida & Shanouda, 2015; Yoshida, 
Shanouda, & Ellis, 2013). 

      By removing wheelchairs and enforcing the desire to return to a supposed normative 
state, to walk again, hospitals ensured that bodies out of bounds would strive to reclaim their 
normalcy. This expectation was part of an emerging rehabilitation philosophy shaped by the 
aftermath of the Second World War (Anderson, 2011). Medical ideology of bringing back 
individuals to complete and healthy bodies was in many ways mirrored in the effort 
throughout Western countries to rebuild the nation state. Therefore, the disabled body, the 
body out of bounds, needed to be brought back in line with the image of the nation state as a 
healthy body (Garland Thomson, 1997; Lacom, 2002).

      Nation building, according to Davis (2006) refers to a process of constructing a strong 
and powerful national image by perpetuating the dominance of the normal in everyday 
civilian lifestyles, including reinforcing normative body types and movement. The toy 

---PAGE 25---

contributed to this dominance of normalcy by being a representation of what the body should 
look and act like, much like the gymnast in the circus (Davis, 2006). In fact, as Assael (2005) 
argues, the circus was a site of 'consolidated patriotism' where the theater of war was on 
display and patriotic representations were available for mass consumption. Thus, the toy body 
can be seen as a metaphor for the robustness and capacity of the national body. If one did not 
fit this image, or if one's body was different from this form, (e.g. disabled, disfigured, other) 
then they were thought not to be able to contribute to society and were also seen as a potential 
burden on the nation (Davis, 2006).

      The importance of a normative body to nation-building is also reflected in the 
Olympic movement. After all, the Toy Gymnast depicts an athlete and its continued 
popularity, even the existence of the toy, after both the circus and freak show lost their appeal 
in the late 19th century can be tied to the success of the sport at the largest athletic tournament 
in the world, the Olympics. Of course, the Olympics have always represented a normative 
ideal, but not more so than in 1936 when it was held in Berlin, Germany, just before the start 
of the Second World War. McFee and Tomlinson's (1999) analysis of Leni Riefenstahl's film 
Olympia of the 1936 Berlin Olympic Games and selected aspects of Reifenstahl's film 
Triumph of the Will of the 1934 Nazi Party Nuremberg Congress-demonstrate how 
Riefenstahl's emphasis on a visual celebration of the human body -using classical Greek 
antiquity- provides a representation of innocence. In addition, it diverts attention away from 
the racist and ableist values, and ideologies that are reproduced in the film. Specifically, the 
film in its opening scenes depicts a Greek landscape, with statues of antiquity that transform 
before our eyes into 'live Aryan bodies,' white, naked, strong, muscular, symmetrical and 
athletic. These figures throw the discus and the javelin, and we see the torch relay move 
through different regions in Europe before it reaches Berlin. According to McFee and 
Tomlinson (1999), the torch relay serves to link Berlin (and we suggest, by extension, the 
Nazi regime) with that classical past. While there is no accompanying commentary, the film 
speaks volumes about the type of body that is to be celebrated. We cannot ignore the fact that 
at the same time the Olympics were taking place, thousands of disabled people were being 
rounded up in Germany to be institutionalized and sterilized. An estimated 300,000 - 400,000 
disabled people were sterilized before and during the Second World War, including 
individuals diagnosed with feeblemindedness, schizophrenia, and epilepsy (Snyder & 
Mitchell, 2006; United States Holocaust, n.d.). This does not include the hundreds of 
thousands of disabled people who were murdered by the Nazis during the Second World War.

      The Berlin Olympic Games also hosted a shattering moment for the 'science' that 
constituted whites as racially superior - Jesse Owens' four Olympic gold medals. This was a 
significant moment in history that reflected negatively on the Nazi Regime which had spent so 
much time and money ensuring a victory for their athletes. Still, Jesse Owens' victory at the 
Olympics was not reflected in American material culture, especially in the figures and images 
that represented athleticism. For decades after Owens' wins, children's toys continued to 
depict prominent individuals as singularly white. Negative depictions of black people in 
children's literature and the racist embodiment of black people in the Golliwog would 

---PAGE 26---

continue for decades. Wilkie (2000) provides some clarification on this matter, suggesting that 
"toys not only mirrored societal ideals that emphasized Aryan features (blond, blue-eyed, fair-
skinned), but also reflected racial stereotypes" (p. 105). The Toy Gymnast, as we described 
before was always depicted as white, even when manufacturing of the toy was not in Western 
countries. By ensuring that these pedagogical tools also reflected ideal physical features, the 
toy reproduced normative portrayals of whiteness and ensured the representations of white 
supremacy persisted. Although it may seem like an overstatement to constitute such authority 
onto a toy, any attempt to extricate the toy from the racial discourses it represents is 
problematic. Varga and Zuk (2013) make this especially clear when they argue that to 
"...disentangle the discourse of white childhood racist representation... [without 
acknowledging this action as,] ...an assertion of racial power [is] to reinstate a hierarchical 
order of human values that serves white interests" (p. 665). In the banality of playing with the 
Toy Gymnast, racist discourses are reproduced and racial hierarchies, which were equally 
inscribed onto society through the eugenic project, are reflected.

      Others may suggest that a young woman playing with a figure so overtly masculine 
may be a moment of subversion. Young women did of course play with dolls and other 
traditionally female playthings in the hospital. Lynn is a primary example of this as she played 
with both dolls and the Toy Gymnast. However, to understand how heteronormative 
discourses might play out in this particular moment it is essential to consider Lynn's gender in 
relation to her disability. Lynn's femaleness might have prevented closer inspection or 
surveillance of the items she was playing with, and as such, she may have been able to play 
with toys traditionally for both male and female players. In fact, as Grant (2004) argues, it was 
young men's interactions with playthings during this time that was of particular concern for 
medical authorities. Grant (2004) argues that boys who played with dolls or other traditionally 
female items, could become subject to medical or clinical intervention; to prevent them from 
becoming 'sissies.' Additionally, disabled bodies, including Lynn's at the time, have a long 
history of being denied sexual experiences (Shakespeare, Gillespie-Sells, & Dominic, 1996). 
These dominant assumptions persist about disabled people's inability to participate in sexual 
experiences (Kauffman, Silverberg, & Odette, 2003). Lynn, at the time of acquiring her 
disability would have been thought of as 'damaged goods' (Phillips, 1990), and therefore, 
both marriage and children would have been unthinkable and often times cautioned against. 
The same heteronormative expectations that exist for the rest of society do not always come 
into play for disabled people. Here, disability offers scholars an interesting limitation to 
heteronormative discourses; what happens when sexuality is considered not only 
inappropriate and dangerous, but also impossible?

      The male representation of the Toy Gymnast, however, is still an important 
consideration in this analysis as it helps illustrate how normative and gendered discourses 
interlock. Thomas (2003) suggests that Barbies and other traditionally female playthings were 
culturally associated with gendered ideals of passivity, nurturing, and submission. These are 
not traits or characteristics commonly associated with the promotion of normalcy. In fact, a 
Disability Studies perspective draws us to consider how the Toy Gymnast, in enacting 

---PAGE 27---

heteronormative male ideals-such as stoicism, perseverance, and self-reliance-was a 
purposeful gift that sought to instill in the player a drive to walk again, heal, and be active. 
After all, what was being asked of these children was not for them to care or nurture their 
bodies. Rather, quite the opposite. Like an athlete or a soldier, they were being asked to 
contort, manipulate, and essentially push their bodies to the edge. The Toy Gymnast was 
meant to inspire such movement and passion, swinging, rotating, swaying, always patterned, 
in flow, and in keeping with the pace. Furthermore, playing with dolls, which young women 
did in the hospital might have been a way for them to practice traditional female traits such as 
care, and express the affection and support they may have desired from family and medical 
staff who were pushing them so hard.

Learning agentic capacity

      To continue this line of thought and as a way to avoid, what Baxter calls, "the imperial 
practices of adults", that is the possibility of only discussing the object as it is reflected from 
the perspective of older individuals, we want to consider the possibility of the toy as an 
element that helped children cope with their changing circumstances (as cited in Brookshaw, 
2009, p. 380). Moshenska (2008) describes how children's collections of shrapnel during the 
Second World War, for both play and trading may also be read as a means of coping with the 
ravages of the War. Collecting and then playing with these once violent objects, Moshenska 
(2008) argues that this might have been a way for children to mitigate their experiences of 
war. We could argue that much like the children in war-torn Britain, but not analogous to 
those experiences of war, children affected by polio also relied on the material objects around 
them to make sense of and cope with the new conditions of their bodies. Although not 
shrapnel, toys and things they received from parents, siblings, and family members meant a 
considerable amount during this transition when many were forcibly confined to beds or iron 
lungs. The Toy Gymnast, powerful, muscular, mobile, the antithesis to the majority of the 
children's experiences of their bodies at the time, in addition to promoting a particular 
discourse of normalcy may also be read as a tool that helped mitigate polio-children's new 
circumstances. After all, the Toy Gymnast, mobile as he may be, also required the act of a 
child to move him. His actions and representation, although clearly hyper-normative, were 
also dependent on others and not without limitations. Moshenska (2008) theorizes that the 
collecting, ordering, and trading of shrapnel was about children's attempts to regain a sense of 
power, specifically in relation to controlling the material that was causing the fear and death 
around them. Unlike shrapnel, the materials of disease, and specifically of polio, were out of 
reach for most children. Wheelchairs, stethoscopes, leg braces, cribs/beds, iron lungs as well 
as the hospital rules were not easy for children to manipulate, although they tried. One 
participant described spitting games from the confines of her crib and tossing balls back and 
forth and making staff retrieve them when they were dropped. Children in iron lungs, who 
only had the capability of using their mouths or face to manipulate the world around them, 
often used mirrors attached to the iron lung to communicate with each other and to play. 
Although they were confined, children did find ways to act upon and control the space around 
them, even in small ways, like in their ability to wind-up the mechanism that allowed the Toy 
Gymnast to sway. We suggest that in having this capacity to act upon the world around them, 

---PAGE 28---

children learned about their agentic capabilities. The agency they learned, through playing 
with toys and other objects in the hospital, would prove to be beneficial as they grew up and 
had to actively navigate an inaccessible and often discriminatory society. The Toy Gymnast 
therefore was a site of learning both about how their bodies were different and could be 
classified as broken and non-normative (and in need of repair), but also how they could reject 
those discourses (however difficult) and act upon the material elements around them to 
change them to fit their needs. We return to Lynn, one final time for an example of how this 
worked. As Lynn expressed earlier, using a wheelchair was not an option in the hospital and 
for most of her life she adopted similar normative discourses, of perseverance and 
independence by opting not to use a wheelchair. However, Lynn did eventually decide to use 
a wheelchair in her place of employment. Her decision allowed her to continue to work and 
she negotiated its use in the workplace. Lynn does not attribute her use of the wheelchair later 
in life to playing with a Toy Gymnast as a child, nor are we arguing that this is the case. 
Rather, we are contending that as powerful and omnipresent as heteronormative discourses are 
in society and in the material things around us, especially around children, disabled people did 
push back against those discourses and practiced an agentic force that allowed them to 
advocate for access to work, love, life...and play.

Conclusion

      We present in this paper a demonstration of the potential a Disability Studies 
perspective offers to material culture analyses. Although disability was an immanent part of 
the contextual history of this object, we have demonstrated the breadth and depth that a 
disability material culture analysis can provide to scholars. In addition to considering the 
gendered, racialized, and heteronormative features that are represented in the Toy Gymnast, 
and the spaces within which children were playing with it, we must also consider what 
messaging is being communicated to children about bodies of difference. The messaging that 
reinforces bodies of difference as inferior, incapable, or that more subtlety encourages 
normative and unattainable representations of the body need to be rejected and critiqued.

      We cannot ignore the fact that this Toy Gymnast, for long parts in its history was 
made from celluloid, a highly flammable and combustible material that was later banned from 
use precisely because of its dangerous properties. We contend that there may be no better 
metaphor for the illusion of normalcy than to be compared to such a hazardous and precarious 
material. Normalcy is ultimately a harmful concept that does little else but create division in 
society and isolates those who fail to meet its unattainable standards. For those of us who are 
different, other or disabled, normal has always been an illusion, a mirage of significant 
proportions, with a devastating and deadly history. We have read this history onto the Toy 
Gymnast, a seemingly innocent plaything given to a child as a means to keep them company 
during their stay in the hospital. However, as we have demonstrated, the toy was also a 
cultural agent imbued with various hegemonic discourses that have, for those who played with 
it, both symbolic and real impact.

---PAGE 29---

Fady Shanouda, PhD, Candidate at the University of Toronto. His research focuses on 
mapping disabled and mad students experiences of disclosure in higher education. Fady has 
published scholarly articles on issues related to Canadian disability history, disabled 
children's experiences in primary school in the 1950s, and on barriers related to e-voting and 
online voting for disabled people. 

Karen K. Yoshida, PhD, is a Full Professor in the Department of Physical Therapy and a full 
member of the Graduate Department of Rehabilitation Sciences, the Dalla Lana School of 
Public Health, University of Toronto. She received her Ph.D. in Community Health 
(Sociology of Health/Disability) and has been an active part of the disability community for 
over 25 years.

Acknowledgement

This research was supported by the Social Sciences and Humanities Research Council of 
Canada [grant number 410-2009-2272], awarded to Karen K. Yoshida as Principal 
Investigator." If no, can you add this sentence to end the first endnote? The first endnote will, 
therefore, look like this: "This paper is part of a larger academic-community research project 
that focuses on documenting the oral life histories of Canadians who contracted polio prior to 
1955 (see Yoshida & Shanouda, 2015; Yoshida, Shanouda & Ellis, 2013). This research was 
supported by the Social Sciences and Humanities Research Council of Canada [grant number 
410-2009-2272], awarded to Karen K. Yoshida as Principal Investigator.

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Endnotes

      1. This paper is part of a larger academic-community research project that focuses on 
documenting the oral life histories of Canadians who contracted polio prior to 1955 (see 

---PAGE 32---

Yoshida & Shanouda, 2015; Yoshida, Shanouda & Ellis, 2013).

      2. Our research discovered other treatments used to combat polio including serums, 
nasal sprays marketed as preventative measures, and even the Globe and Mail (1953) reported 
on a San Francisco treatment that used non-poisonous snake venom.

Playing with Normalcy: A Disability Material Culture Analysis by Fady Shanouda & Karen 
K. Yoshida is licensed under a Creative Commons Attribution 4.0 International License. 
Based on a work at https://rdsjournal.org. Permissions beyond the scope of this license may be 
available at https://www.rds.hawaii.edu.
      
---PAGE 33---
      
 REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Research Article
'With Hope to Help Ourselves and Others': The Impact of Disabled 
People's Organisations on the Lives of Persons with Disability in 
Uttarakhand, North India
Michelle Leung, MD (1), Alexandra Devine, PHP, MPH (1), Lawrence Singh (2), 
Teem-Wing Yip, FAFPHM, FACRRM, PHM, MBBS (1), Nathan Grills, PhD, MPH, MBBS 
(1,3)
(1) The Nossal Institute for Global Health, Melbourne School for Population and Global 
Health, The University of Melbourne, Australia 
(2) HOPE Project, Agnes Kunze Society, Dehradun, India
(3) Australia India Institute, The University of Melbourne, Australia
Melbourne, Australia and Dehradun, India

Abstract: This study conducted in Uttarakhand, North India aims to contribute evidence on 
the effectiveness of Disabled People's Organisations in a low and middle-income context. 
Key domains reported by participants included: increased social connectedness, personal 
development, livelihood, improved sense of community, and participation within the family.

Keywords: Disabled People's Organisations; Persons with Disabilities; Inclusion

Background

      Disability is a complex and evolving concept. The conceptualization of disability 
outlined in the United Nations Convention on the Rights of Persons with Disabilities 
(UNCRPD) is perhaps the most salient and representative of persons with disabilities. It 
defines persons with disabilities as "those who have long-term physical, mental, intellectual or 
sensory impairments which in interaction with various barriers may hinder their full and 
effective participation in society on an equal basis with others" (United Nations, 2006, Art. 1).

       The barriers mentioned in the Article 1 of the Convention on the Rights of Persons 
with Disabilities (CRPD) may include limited awareness of disability or negative attitudes 
within communities; inaccessible buildings or transport; lack of access to information in 
accessible formats; or policies that do not promote equal participation by persons with 
disabilities (United Nations, 2006).

      Stemming from the disability rights movement in the 1970s, the rights-based approach 
to disability emphasizes the dignity of persons with disability and their right to enjoy life on 
an equal basis with others (GIZ GmbH & CBM, 2012). The rights-based approach to 
disability inclusion recognizes that persons with disabilities have the same rights as persons 
without disabilities within society, such as the right to basic health care, thus embodying a 
paradigm shift away from the previous social welfare response to disability (Kayess & 
French, 2008). Moreover, this approach supports the implementation of the CRPD as it 
empowers people to know about their rights and increases the capacity and accountability of 
individuals and institutions to address barriers to attaining these rights (GIZ GmbH & CBM, 

---PAGE 34---

2012). 'Nothing about us without us,' a negotiating slogan adopted by the International 
Disability Caucus, is the principle in which the CRPD represents continual partnering 
between the United Nations (UN) and persons with disabilities (Kayess & French, 2008). 
Disability-inclusive practices envisions that persons with disabilities can fully participate in 
all aspects of society and have the potential to significantly contribute to their families and 
communities (CBM Australia, 2012).

      Disabled People's Organisations are established by and for people with disabilities. At 
the board and membership levels, DPOs are controlled by a majority of persons with a 
disability (at least 51%) (PWDA, 2017). The role of DPOs is to provide persons with 
disabilities with a voice of their own, identify needs, express views on priorities, evaluate 
services and advocate change and public awareness (PWDA, 2017). As a key pillar in the 
response to global disability, DPOs act to promote participation and wellbeing through 
activities such as advocacy, service provision and social support.

      Community-based rehabilitation (CBR) is a strategy developed by the World Health 
Organization (WHO) following the 1978 Declaration of Alma-Ata. The purpose is to 
strengthen DPOs and provide equal opportunity and social inclusion for all persons with 
disabilities. This strategy promotes collaboration between persons with disabilities, 
community leaders, and their families to ensure inclusion and participation of persons with 
disabilities (WHO, 2017). Thus, CBR highlights the importance of DPOs in promoting 
inclusion. CBR is visually represented by the CBR Matrix (WHO, 2010) and consists of five 
key components, including: health, education, livelihood, social and empowerment (see 
Figure 1).

Figure 1 Community-Based Rehabilitation Matrix (WHO, 2010) 
 
Image Description: The diagram of the 'CBR Matrix' includes five key components 

---PAGE 35---

representing health, education, livelihood, social and empowerment. Each key component 
includes sub-key components. The 'HEALTH' key component includes five sub-key 
components: promotion, prevention, medical care, rehabilitation, and assistive devices. The 
'EDUCATION' key component includes five sub-key components: early childhood, primary, 
secondary & higher, non-formal, and lifelong learning. The 'LIVELIHOOD' key component 
includes five sub-key components: skills development, self-employment, wage employment, 
financial services, and social protection. The 'SOCIAL' key component includes five sub-key 
components: personal assistance, relationships marriage & family, culture & arts, recreation 
leisure & sports, and justice. The 'EMPOWERMENT' key component includes five sub-key 
components: advocacy & communication, community mobilization, political participation, 
self-help groups, and Disabled People's Organizations.

      Since 2007, the Nossal Institute for Global Health has supported the development of a 
network of community health programs in North India, collectively referred to as the 
Community Health Global Network - Uttarakhand Cluster. The Uttarakhand Cluster has 
helped its members co-operate on activities such as health worker training, linking with the 
government health system and organizational strengthening. It has also collectively increased 
access to resources to improve the provision of community-level health and development 
services. Further, the Uttarakhand Cluster has developed a strong focus on improving the 
participation of persons with disabilities in their communities and promoting health and 
wellbeing. To support this, member organizations of the Uttarakhand Cluster have assisted 
persons with disabilities in forming networks and ultimately DPOs. The two DPOs studied 
here were formed as a result of people with disabilities coming together and realizing the need 
to work together. Samvedna non-governmental organization (NGO), representing the 
Uttarakhand Cluster, helped support the establishment of these nascent DPOs by facilitating 
training of the DPOs members in organizational management, their rights under the UNCRPD 
and advocacy options. The Samvedna NGO, henceforth referred to as the facilitating NGO, 
also organized learning visits to other DPOs and guided the DPOs through the complex 
process of applying for official DPOs registration. None of the facilitating NGO staff were 
members or leaders of the DPOs.

       A previous process study found that the formalization of the DPOs was supported by 
initial efforts to promote community awareness of the rights of persons with disabilities, and 
financial and human resource support were provided through the Uttarakhand Cluster and 
local village leaders. Facilitating NGO staff worked with DPOs members to help them 
develop skills in effective group leadership; establishment of organizational practices and 
governance structures; advocacy and community awareness raising training; fundraising; and 
support to create more accessible environments. Local village leaders (Pradhan) provided the 
DPOs with a space to meet (Young, Grills, Reeve, Devine, & Singh, 2016). Networking and 
peer-exchanges between DPOs, whereby DPOs members of one group spent time with a more 
established DPOs to observe and learn from their practices. This enabled peer-led information 
sharing and fostered collaborative relationships between DPOs (Young et al., 2016). 

      Whereas the previous research has described the formation of DPOs, in this study we 

---PAGE 36---

aimed to contribute to the understanding of the effectiveness of DPOs in a low and middle-
income context and the impact of DPOs on the lives of persons with disabilities and their 
families.

Methods

      This qualitative study involved conducting semi-structured interviews and focus group 
discussions (FGD) - between February and March 2017 - across two study sites (of 15 DPOs 
sites) in Uttarakhand, North India. Ethics approval was received from the University of 
Melbourne Human Research Ethics Committee (HREC) and the local ethics committee of the 
Community Health Global Network (CHGN). In consultation with the facilitating NGO, the 
two sites selected were considered feasible for conducting the research, as well as, ensuring 
geographical representativeness and demographics of the study population. The first study site 
was located in the plains region of Dehradun District, with the second site located in the 
mountain region of Tehri Garhwal District (see Table 2 and 3 for demographics of the sites).

Table 2 Demographics of the two DPO sites

DPO 
study 
site
Location
Month/year of 
first group 
meeting
Number of 
DPO members 
at site
Age 
range
Location
1
Tehri Garhwal
January 2015
32
18-61
Samvedna Centre, Thatyur
2
Dehradun District
May 2015
44
18-70
Aarohi Sweet Shop, Badripur

Study Population

      The study population were persons with disabilities currently participating in the 
DPOs, their family members and facilitating NGO staff (see Table 3 for demographics of 
study participants). The facilitating NGO staff were experienced in community mobilization 
and in working with people with disabilities.

      Persons with disabilities were purposively sampled for interview in consultation with 
the facilitating NGO staff and DPOs members. The research team ensured a representative 
sample of age, gender, and type of disability, as well as, representation from people with 
different levels of involvement and inclusion in the DPOs activities. Family members that 
were recruited for interviews, were selected in consultation with persons with disabilities 
being interviewed. The NGO leaders helped identify the appropriate facilitating NGO staff to 
be interviewed. The sample consisted of twenty persons with disabilities currently 
participating in the DPOs, eight family members of persons with disabilities who have 
participated in the program, and 14 facilitating non-governmental organization staff. All 
participants were 18 years of age or older.

---PAGE 37---
      
Table 3 Demographics of Study Participants
Type of 
interview
Total number 
of participants
Gender
Age
Type of disability
Tehri Garhwal District 

SSI (person 
with 
disability)
9
6 Male
3 Female
18-61
-Physical impairment: 4
-Sensory impairment: 2
-Intellectual impairment: 1
-Mixed impairment: 2
SSI (family 
of person 
with 
disability)
6
2 Male
4 Female
18-49

FGD
8
4 Male
4 Female


Dehradun District

SSI (person 
with 
disability)
11
6 Male
5 Female
18-70
-Physical impairment: 8
-Sensory impairment: 0
-Intellectual disability : 3
-Multiple impairment: 0
SSI (family 
of person 
with 
disability)
6
2 Male 
4 Female
19-53

FGD
6
2 Male
4 Female
32-55


Data Collection

      The lead researcher conducted all semi-structured interviews and focus group 
discussions in English with the support of two Hindi-English translators. With the informed 
consent of all study participants, the semi-structured interviews and focus group discussions 
were recorded with an audio recording device. The duration of the semi-structured interviews 

---PAGE 38---

was 20 minutes, and focus group discussions was one hour. The focus group discussions and 
semi-structured interviews were held at DPOs meeting sites or in participants' homes when 
accessibility to meeting sites were difficult.

      The two Hindi translators received one-day of training, which involved familiarization 
with the process of informed consent, semi-structured interviews and focus group discussions 
question guides. Question guides were iteratively developed in consultation with the staff of 
the facilitating NGO in India and disability researchers in Australia. Interviews were 
transcribed in real time and translated into English. Written or verbal consent was obtained 
from all study participants.

Analysis

      Inductive thematic analysis was used to analyze the data. In this 'bottom up' method, 
the patterns observed in the data were used to generate themes (Braun & Clarke, 2006).

      This technique was chosen, as this coding approach is data driven, and avoided fitting 
data into analytic pre-conceptions or pre-existing coding frames, thus generated some 
unanticipated insights. Three research team members were involved in familiarization with 
the transcribed data, coding (organization of the data), identification of patterns, generation of 
themes, and finally discussion and reconciliation of any differences. From the patterns that 
emerged from the data, the research team generated 6 themes that were representative of the 
participants' responses. Moreover, the barrier, enabler, outcome model, was utilized as an 
organizing framework for the analysis. This method involved sorting and grouping the 
recurring ideas of participants' responses (from the semi-structured interviews and focus 
group discussions) into the categories of barriers, enablers and outcomes within each 
generated theme (see Table 1).

Results

      Six themes characterized the impact of the DPOs on the lives of persons with 
disabilities and their families (see Table 1). These themes covered the domains of 1) social 
connectedness, 2) personal development, 3) participation within the community and family, 4) 
inclusion of previously excluded groups, 5) access to services, and 6) livelihoods. Study 
participants described barriers and enablers related to the overarching themes as experienced 
by persons with disabilities and their families. 

      The barriers identified by the participants were a mixture of barriers related to the 
broader lived experience of disabilities, as well as, barriers experienced by some participants 
in relation to their participation in the DPOs. Some of these barriers have been reduced 
through participation in the DPOs, while other barriers require ongoing action to address. 

Table 1 Summary of Overarching Themes Related to the Impact of DPOs 

Theme 1
DPOs created an opportunity for socialization and connectedness
Barriers
-Negative attitudes of community towards persons with disabilities, thus 
leading to social isolation.
-Lack of support from community for persons with disabilities.
Enablers
-Opportunity to develop friendships with other persons with disabilities and 
NGO staff through DPOs, thus leading to enhanced confidence that improves 
other relationships, such as with family.
-Mentoring of DPOs members by facilitating NGO staff.
-Social gatherings between neighboring villages.
Outcomes 
-Mutual understanding and peer support for individuals with disabilities, "I 
am not alone." 
-Peer support for family members of persons with disabilities.
Theme 2
DPOs empowered persons with disabilities
Barriers
-Limited previous opportunities that promoted self-confidence and 
independence.
Enablers 

-Exposure visits to shopping malls.
-Support to develop skills that develop independence (e.g. self-care skills).
Outcomes 
-Increased self-confidence.
-Learning skills for increased independence.
-Increased skills for self-advocacy.
-Improved recognition of role and responsibility within the family.
Theme 3
DPOs increased involvement within the community and family
Barriers
-Negative societal attitudes and stigma associated with disability.
-Lack of community support.
-Lack of family support.
-Expectation of DPOs as a service delivery.
Enablers
-Attending DPOs meetings.
-Gaining knowledge at DPOs meetings.
Outcomes 
-Sharing knowledge with the village.
-Understanding about disability and the beneficial role of DPOs.
-Greater acceptance and respect from family and community.

---PAGE 39---

Theme 4
DPOs promoted inclusion of previously excluded groups into the community
Barriers
-Gender norms in some communities.
-Communication barriers.
-Attitudinal barriers.
-Venue accessibility for persons with disabilities.
-Geographical accessibility to villages for facilitating NGO staff.
Enablers
-Building relationships with family members.
-Installation of ramps for wheelchair access.
-Female NGO staff traveling in pairs to remote villages.
Outcomes 
-Relationships between DPOs members and the facilitating NGO staff that is 
established on trust.
-Inclusion of previously excluded groups such as women.
-Persons with hearing impairments and intellectual disability remain 
excluded.
-Persons with disabilities in geographically isolated settings still encounter 
difficulty in attending DPOs meetings.
Theme 5
DPOs increased access to government services and resources
Barriers
-Lack of awareness of persons with disabilities in the existence of services.
-Limited access to services.

Enablers
-Facilitating NGO staff provided knowledge about services.
Outcomes 
-Increased usage of disability-specific services.
-Meeting material needs.
-Developing relationships with health professionals.
Theme 6 
DPOs contributed to livelihoods of persons with disability
Barriers
-DPOs meeting times interfering with work.
-Lack of opportunities for persons with disabilities to work.
Enablers
-Income generating activities.
-Tailored meeting times to fit agricultural work schedule.

---PAGE 41---

Outcomes
-Increased access to income, savings, and jobs.
-Opportunity to work is not universal across DPOs sites.

Theme 1: DPOs Created an Opportunity for Socialization and Connectedness

      Involvement in the DPOs provided persons with disabilities with opportunities to form 
social connections with other persons with disabilities and staff of the facilitating NGO. Prior 
to joining DPOs, persons with disabilities often experienced social isolation, and lack of 
support from the village and broader community. One DPOs member expressed, "[my] 
thinking has changed. I used to stay at home alone. There was no one like me. Now I come to 
the DPOs meeting, and was encouraged" (male with a physical disability, aged 30, Dehradun 
District). 

      After becoming involved in the DPOs, persons with disabilities were able to recognize 
that there were other persons with disabilities. Participants described the relief of discovering, 
often for the first time, that there were other persons with disabilities living in their 
communities who had shared similar circumstances and challenges. As a result, they no 
longer felt that they were alone and they felt a sense of connectedness with their peers. For 
example, one DPOs member commented, "Before joining DPO, I used to feel uncomfortable 
when going out. After joining DPO, I feel DPO members are my family" (female with an 
intellectual disability, aged 24, Dehradun District). 

      Facilitating NGO staff also highlighted that the DPOs increased the visibility of 
persons with disabilities in the community. Six out of the six NGO staff members from 
Dehradun district agreed that the increased visibility encouraged others to participate, "Seeing 
other persons with disability in DPO meetings motivates [other] persons with disability to 
attend" (facilitating NGO staff member, Dehradun District).

      Family members also reported they found comfort and a sense of connectedness in the 
realization that there were other families in the community that has a family member with a 
disability. One father for example commented, "My son sits with other children with [a] 
disability. I feel good that my son isn't the only child with disability and no longer feel sad" 
(father of DPOs participant with a physical disability, Tehri Garhwal). 

Theme 2: DPOs Empowered Persons with Disability

      Prior to joining the DPOs, participants described that their lives were negatively 
affected by anxiety and a lack of self-confidence. After joining the DPOs, many participants 
reported that they had experienced what can be described as personal growth. This included 
increased self-confidence, gaining independence, and improved capacity for self-advocacy. It 
was noted that DPOs members who were more frequently involved in DPOs activities were 
more likely to report on increased self-confidence and the feeling of empowerment.

---PAGE 42---

      Persons with disabilities and their family reported that activities organized through the 
DPOs, such as support to develop self-care skills and community outings, helped develop 
independence and fostered a sense of empowerment among persons with disabilities. As 
described by one family member, "She has learnt her signature and can go to the bank alone. 
[She] goes everywhere alone" (sister-in-law of DPO participant with a physical disability, 
Dehradun District). The self-confidence of persons with disabilities were also enhanced when 
four individuals from the Dehradun District mentioned they had positive interactions with 
other community members during DPOs community outings, "People in the mall respected us 
a lot" (female with a physical disability, aged 25, Dehradun District). 

      Increased self-confidence and empowerment gained through participating in the DPOs 
enabled participants to engage in other aspects of their communities, including the area of 
self-advocacy. This was most pertinently described by a participant in his newfound 
confidence and desire for taking ownership in advocating for persons with disabilities and 
leaving a legacy:

Initially, I didn't talk to neighbors. Now I can even talk to Chief Minister of 
Uttarakhand. [I am] more confident...I thought, what will we as persons with 
disability do? Used to wait for time to pass. Now, I think we have to do something, so 
the world can remember us (male with a physical disability, aged 30, Dehradun 
District). 

      As highlighted by the following quote, in some cases, the confidence gained through 
the participation in the DPOs had a profound impact on the lives of persons with disabilities, 
"After joining DPOs, I have confidence, [I] can do. I started a business, got married, have 
daughter" (male with a physical disability, aged 25, Dehradun District).

      Further, not only did the independence of persons with disabilities improve, but it also 
improved the families' confidence in the capacity of their family members with a disability to 
be independent and participate in their communities, "Before joining DPOs, my sister did not 
clean herself, not dress herself. After joining DPOs, she has learnt independent care skills. In 
preparation for attending DPOs meetings, she dresses herself, takes bath" (sister of DPOs 
participant with an intellectual disability, Tehri Garhwal).

Theme 3: DPOs Increased Involvement within the Family and Community
      Prior to the presence of DPOs, persons with disabilities reported there was limited 
understanding of disability within their communities and that they would often experience 
stigma and discrimination. This resulted in persons with disabilities remaining isolated within 
their homes. Facilitating NGO staff also highlighted that during the process of formalizing the 
DPOs, there was resistance from families and other community members to the idea of 
establishing DPOs and supporting the participation of persons with disabilities. For example:

Family members of persons with disability were unwelcoming and denied that PWD 
needed help. [They asked] what can you do for my family?...We had to explain that 

---PAGE 43---

the motive for joining DPOs is to gain rights, join community, gain resources and 
knowledge about government schemes (facilitating NGO staff member, Tehri 
Garhwal).

      Participants reported that DPOs continue to promote positive attitudes towards 
disabilities within their communities, this includes improved understanding within the 
community and support from families with disability members to participate in DPOs. 
Additionally, the DPOs provide a platform for persons with disabilities to learn about their 
own rights, as well as, acquire health promotion information. DPOs participants highlighted 
that they are now confident to share the knowledge they have learned with their communities. 
This demonstration of knowledge and confidence has further shifted the mindset of the 
community, with family members interviewed highlighting this as a positive impact. The 
initial skeptical attitude adopted by the village regarding the utility of the DPOs was reversed 
when the village could see positive change in the lives of persons with disabilities due to their 
involvement in the DPOs, "Before joining DPO, villagers and family used to tease my son, 
and didn't call my son by name. Now the village and my family call my son by name" (father 
of DPOs participant with a physical disability, Tehri Garhwal).

      "Initially, [the] village was cynical about what DPO could do. But now [the village] 
can see change in persons with disability, [so they are] no longer cynical" (mother of DPOs 
participant with an intellectual disability, Dehradun District).

      As a result of the village and family members developing an understanding about 
disability and the beneficial role of DPOs, persons with disabilities reported they were now 
more likely to be treated with acceptance and respect within their families and the wider 
community. As described by one DPOs participant, "[the] village used to make fun of PWD, 
they didn't ask PWD, 'How are you?' [the] village now respects PWD and accepts them as 
equals" (female with a physical disability, aged 40, Tehri Garhwal). 

Theme 4: DPOs Promoted Inclusion of Previously Excluded Groups

      During the early stages of the establishment of DPOs, facilitating NGO staff reported 
that they encountered difficulty in including some persons with disabilities. In particular, 
some family and community members were resistant to the inclusion of persons with 
disabilities from the local Muslim communities; persons who are Deaf or hard of hearing or 
with other communication difficulties; and persons with an intellectual disability. Some of 
these families and community members acted as gatekeepers and barriers to inclusion.

      In the plains region of Dehradun District, all facilitating NGO staff participating in the 
focus group discussion (FGD) interviews described the difficulty of engaging the Muslim 
community. For example, "Initially, when facilitating NGO staff approached the homes of 
Muslim persons with disabilities, the Muslim males rejected the female staff. After being 
rejected, the staff members expressed feelings of anxiety and nervousness" (facilitating NGO 
staff member, Dehradun District). Facilitating NGO staff described the importance of 
gradually building the trust with the Muslim community and family members of persons with 

---PAGE 44---

disabilities in order to gain their support to encourage their family members to participate in 
the DPOs. 

      Facilitating NGO staff also described ongoing efforts to develop relationships with 
persons with an intellectual disability and their families. While this was reported to have 
improved the participation of some persons with an intellectual disability within the DPOs, 
facilitating NGO staff acknowledged this participation is still reliant on the support of family 
members and/or support persons, "It is difficult to communicate with persons with intellectual 
disability if they are not with their caregiver or family member" (facilitating NGO staff 
member, Tehri Garhwal). The inclusion of persons who are Deaf or hard of hearing was 
reported to be prevented by the lack of the use of sign language by other people who are Deaf 
or hard of hearing, facilitating NGO staff, and the broader community.

      All facilitating NGO staff commented that during the early stages of the DPOs 
formation process, physical accessibility was a major barrier to participation of persons with 
disabilities. Difficulty in the physical accessibility of the surrounding areas also affected both 
persons with disabilities traveling to DPOs meeting places, and staff of the facilitating NGO 
traveling to the homes of persons with disabilities. Since becoming aware of barriers in the 
accessibility of DPOs meeting sites, participants reported that DPOs have been collaborating 
with the staff of the facilitating NGO to try and improve the accessibility of meeting spaces, 
for example through the construction of ramps. However, persons with disabilities in 
geographically isolated villages still encountered difficulty in attending DPOs meetings.

Theme 5: DPOs Increased Access to Services and Resources

      Before the formalization of the DPOs, persons with disabilities reportedly experienced 
very limited access to disability-specific and general health services. Through participation in 
the DPOs and the support of facilitating NGO staff, persons with disabilities and their families 
reported learning about government programs, such as the disability certificate which enables 
a person to receive a pension. Facilitating NGO staff were reported to have assisted persons 
with disabilities to register for these available entitlements. As such, one DPOs member 
remarked that, "after joining DPOs, problems were sorted, including disability certificate, 
pension" (male with a physical disability, aged 28, Tehri Garhwal). 

      DPOs members, often with the help of facilitating NGO staff, accessed other health 
care services including acquiring hearing aids, leg prostheses and wheelchairs. One DPOs 
member commented that through the DPOs, he had developed relationships with health 
professionals, including doctors and physiotherapists, who were then able to promote the 
health seeking behavior of DPOs members. Examples were also shared of DPOs members 
working together to mobilize help for material needs of their members, "DPO organized the 
repairing [of] the family house and railing. To prevent falling when she has a seizure. This 
convinced her to join the DPO" (sister of DPOs participant with a physical disability, Tehri 
Garhwal).

---PAGE 45---

Theme 6: DPOs Contributed to Livelihoods of Persons with Disabilities

      Some DPOs were reported to have had a focus on income generating activities for 
their members. For example, "We collect monthly money for savings to deposit at bank to 
help other members" (female with a physical disability, aged 40, Tehri Garhwal). Similarly, as 
highlighted by another participant, "[We have] learned candle making, organic rubbish 
composting, paper earrings, apron making" (female with a physical disability, aged 25, 
Dehradun District). For some participants, this has led to access to some income, savings and 
skills for acquiring a job. 

      However, the opportunity to work was not universal across both DPOs sites. Whereas 
in the mountainous region of Tehri Garhwal, many persons with disabilities were reported to 
be involved in agriculture work, opportunities for agricultural livelihoods or other work was 
reported to be limited in the plain districts of Dehradun. Participants in these areas reported 
they were disappointed that their participation in the DPOs had not improved access to more 
livelihood opportunities for persons with disabilities. One person with a disability reported for 
example, "DPO has given me hope to help ourselves and others, but I have not seen any 
changes. I would like to see changes, since disability is a barrier to work. Disability prevents 
work. I want to see us do our own work" (male with a physical disability, aged 42, Dehradun 
District). 

Discussion

      This study demonstrated that participation in DPOs can have a positive impact on the 
lives of persons with disabilities and their families. Key areas where impact was found 
included: social connectedness, personal development, livelihood, community, and 
participation within the family.

      The functioning of the DPOs evaluated in this study was supported by the framework 
presented by the CRPD, particularly the convention's role in detailing the rights of persons 
with disabilities and setting a code of implementation. We found evidence that DPOs have 
contributed or are contributing to Article 8 through awareness raising; Article 25 through 
access to health; Article 27 through work and employment; Article 30 through the 
participation of cultural, recreation and leisure (United Nations, 2006). 

      The beneficial outcomes of DPOs in this study had effects across the five pillars of the 
WHO CBR Matrix, particularly in advancing health, empowerment, and social inclusion 
(WHO, 2010, 2017). This study showed that the activities of the DPOs were beginning to 
address the major objectives of the CBR, including; 1) ensuring that persons with disabilities 
maximize their physical and mental abilities, thus becoming active contributors to the 
community; and 2) activating communities to promote and protect the human rights of 
persons with disabilities through changes within the community, for example, by removing 
barriers to participation. This was achieved through the combined efforts of persons with 
disabilities, their family and facilitating NGO staff.

---PAGE 46---

      Literature supporting that DPOs can improve participation of persons with disabilities 
in the community can be found (Young et al., 2016). In a study in India, it was similarly 
observed that self-help groups were an avenue for persons with disabilities to emerge from 
social isolation and engage in collective development and welfare (Kumaran, 2011). In 
addition, there were findings that DPOs challenged negative societal attitudes, resulting in 
greater acceptance of persons with disabilities in the village. This suggests that social 
connectedness of persons with disabilities with the broader community is beginning to occur. 

      Participating in activities conducted by facilitating NGO staff, included learning self-
care skills and exposure through visits to a local mall. This enabled persons with disabilities to 
acquire skills and increased their self-confidence. The experience of empowerment, via 
participation, is consistent with other studies involving individuals with psycho-social 
disability in a low- and middle-income context (Carroll et al., 2016; Dhungana & Kusakabe, 
2010). 

      Similar to what has been described in a study conducted in Nepal (Morrison et al., 
2015), the DPOs in this study enabled persons with disabilities to experience greater 
acceptance from their family and greater engagement with their community. Participation in 
DPOs enabled information sharing about disabilities, which challenged and re-oriented 
previous negative attitudes. Moreover, there was evidence that groups of individuals, such as 
persons with an intellectual disability, who were previously excluded from participating in 
DPOs, but are now beginning to be included in the DPOs. These previously excluded groups 
not only included persons with an intellectual disability, but individuals from the Muslim 
community. Staff of the facilitating NGO reported that greater inclusion has been achieved 
due to DPO's addressing barriers to participation. Consistent efforts from facilitating NGO 
staff had reached out to previously excluded groups and their family members, which resulted 
in the DPOs gaining a greater understanding of the needs of these previously excluded groups. 
These needs included understanding the most effective way of communicating, building trust 
and affirming DPOs as an accessible space for all persons with disabilities (Polu & Nelson, 
2015).

      Our study found that DPOs enabled greater access to health and disability-specific 
services, consistent with the experiences of DPOs in other countries, for example Brazil 
(Deepak et al., 2013). During DPOs meetings, facilitating NGO staff informed DPOs 
members and assisted access to these services, including accessing disability pensions and 
mobility aids. Due to their tangible nature, access to health and disability-specific services 
was reported by many DPOs members as motivation for joining the DPOs. Upon participating 
in the DPOs, persons with disabilities then realized that service provision was not the only 
role of DPOs, and utilized the DPOs for activities such as advocacy and social inclusion. 

      The priority of income generation was a strongly voiced finding in this study. Our 
study showed that DPOs play a critical role in providing opportunities for persons with 
disabilities to improve their livelihood. By providing a supportive space, DPOs enabled 
persons with disabilities to engage and cooperate with peers in the common goal of 

---PAGE 47---

undertaking income generating activities. Opportunities for improving livelihood were not 
uniform across the two DPOs sites. DPOs members in the mountain region were typically 
engaged in agricultural work; however, several male DPOs members in the plains desired to 
work but felt they had no means to achieve this objective. They expressed that DPOs should 
be doing more to provide for this particular unmet need. Although the purpose of DPOs is to 
promote participation and wellbeing, it does not always translate into providing avenues for 
employment. A study conducted in India found that self-help groups had a vital role in 
facilitating persons with disabilities to work together for their collective welfare and 
livelihood (Morrison et al., 2015).

      The barriers encountered by the DPOs in this study are acknowledged in literature. For 
example, in a study conducted in Bhalki, India, physical inaccessibility to venues is noted as a 
major barrier to attendance of persons with disabilities at DPOs meetings (Deepak et al., 
2013). In our study, we found that while venue accessibility can be improved by DPOs, it is 
difficult to improve the accessibility to geographically isolated villages. 

      Lack of family and community support is commonly recognized as a significant 
barrier hindering persons with disabilities from participating in DPOs. As highlighted by a 
study in rural Nepal, we found that DPOs working alongside families to raise awareness about 
the benefits of DPOs attendance and participation addressed this barrier (Morrison et al., 
2015).

      Overall, the findings were consistent between the two DPOs sites. However, some 
differences existed. It was observed that the DPOs located within the plains region of 
Dehradun had members who were more motivated to participate in self-advocacy and in 
income-generating activities - some willing to take ownership of roles (e.g. President, 
Secretary, Treasurer) within the DPOs itself. This might be explained by the greater amount 
of time availability to actively engage in DPOs activities in plains populations as compared 
with DPOs members in the mountain region, who were often restricted by agricultural work 
commitments. 

      Difficulty in physically accessing DPOs venues may also be a contributing factor to 
the level of participation of persons with disabilities in DPOs activities. Moreover, education 
levels of DPOs members in the mountain region were generally lower than DPOs members in 
the plains region (see Table 3 for demographics of study participants), which may partly 
explain the difference in participation between the two contexts. This observation is consistent 
with the findings of a study in rural Nepal that described that some participants attributed their 
lack of education to difficulty in interacting and engaging in groups (Morrison et al., 2015).

Next Steps for DPOs, the Uttarakhand Cluster and Broader Community: 
Implications for Scaling-up DPOs

      To improve participation of persons with disabilities in the DPOs, and ultimately 
enable persons with disabilities to realize their rights to participate in society on an equal basis 
with others, DPOs should continually address the barriers identified through this study. To 

---PAGE 48---

enable greater inclusion of persons who are Deaf or hard of hearing and persons with an 
intellectual disability. In addition, DPOs should continue activities that promote inclusion of 
marginalized groups of persons with disabilities in society. These activities could include 
facilitating NGO staff training of DPOs members in effective communication with individuals 
who are Deaf or hard of hearing and persons with an intellectual disability. Facilitating NGO 
staff members therefore need to build their own capacity to work with persons with an 
intellectual disability.

      DPOs should increase physical accessibility of DPOs meeting venues for persons with 
a physical disability, particularly for individuals from geographically isolated settings. A 
possible strategy is to alternate DPOs meeting venues to allow all DPOs members an 
opportunity to meet closer to their homes. This could be arranged with the help of the local 
village leadership and in discussion with DPOs members and facilitating NGO staff. 

      To address DPOs members desiring more opportunities to improve their livelihood, 
DPOs should continue to work with facilitating NGO staff to better understand the barriers to 
livelihood opportunities for persons with disabilities in the plains districts. Subsequently, local 
solutions should be developed to address barriers to livelihoods. Further research could 
explore how DPOs can support DPOs members in opportunities for income generation. 

      As a result of the positive findings from this study, which showed that activities such 
as information sharing and exposure through visits to malls were effective ways for persons 
with disabilities to engage with their community, we recommend that DPOs should continue 
to encourage persons with disabilities to participate in self-advocacy activities. 

Limitations

      Ideally, if the research team would have included persons with disabilities, this may 
have yielded more insightful and in-depth responses. A selection bias may have occurred, as 
field managers helped researchers recruit participants. There may have been a tendency for 
the inclusion of participants who were more confident and had direct positive experiences at 
the DPOs. The nature of FGDs may not facilitate equal contributions from all participants.

      It is difficult to know how far these findings could be generalized. Even within our 
study, there were differences between the two study sites. However, our findings were largely 
consistent with findings from other studies on the effect of DPOs. Yet given the limited 
published evidence on the effect of DPOs, and given their widespread use in disability and 
development, it is imperative that other research is done to formally assess the impact of 
DPOs in alternative contexts. 

      The findings in this study were predominantly positive about the benefits of 
involvement in the DPOs. However, due to the power differential from the researchers' 
socioeconomic, cultural and educational backgrounds, participants may have felt the need to 
please the interviewer and give the 'right answers'. On the other hand, common themes of 
areas of impact emerged and they were supported by multiple participants from different 

---PAGE 49---

geographical areas. 

Conclusion

      The study of the DPOs in Uttarakhand, North India determined that participation in 
DPOs had a positive impact on the lives of persons with disabilities, particularly for 
promoting social connectedness, personal development and livelihood. While participation in 
DPOs provides many benefits to persons with disabilities, many individuals still prioritize 
work as a core objective and an unmet need in the opportunities provided by DPOs. Many 
findings from this study were similarly described elsewhere in the literature, suggesting the 
findings might have currency when applied to other LMIC contexts. Further research may 
explore how DPOs can continue to better include individuals with hearing impairments and 
intellectual disability. 

Acknowledgements

      This study was supported by a grant from CBM India. We would like to thank all 
participants. The partners in the DPOs project were the University of Melbourne, CHGN 
Uttarakhand cluster and Public Health Foundation of India. Thank you also to Raj Kumar and 
Pooja Bhatt for coordinating logistics of DPOs site visits; Nicole Butcher and Alex Miles for 
assistance in editing this manuscript. 

Declaration of interest statement

The authors report no conflicts of interest.

Michelle Leung, MD, is a medical resident at Eastern Health, and was a MD student at the 
University of Melbourne, Melbourne School of Population and Global Health.

Alexandra Devine, PHP, MPH, is the Senior Research Officer, Disability Inclusive 
Development at the University of Melbourne, Melbourne, School for Population and Global 
Health, Nossal Institute for Global Health.

Lawrence Singh, is the Managing Direct at the Agnes Kunze Society, HOPE Project in 
Dehradun, India.

Teem-Wing Yip, FAFPHM, FACRRM, MPH, MBBS, is a Public Health Physician, Public 
Health at the University of Melbourne, Melbourne, School for Population and Global Health, 
Nossal Institute for Global Health.

Nathan Grills, PhD, MPH, MBBS, is an Associate Professor, Public Health Physician, and 
NHMRC Postdoctoral Fellow, Public Health at the University of Melbourne, Melbourne 
School for Population and Global Health, Nossal Institute for Global Health, and the Australia 
India Institute.

---PAGE 50---

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disabilities: Practical lessons from Bangladesh, Development in Practice, 25(8), 1182-
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	persons-with-disabilities.html

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'With Hope to Help Ourselves and Others': The Impact of Disabled People's 
Organisations on the Lives of Persons with Disability in Uttarakhand, North India by Michelle 
Leung, Alexandra Devine, Lawrence Singh, Teem-Wing Yip, & Nathan Grills is licensed 
under a Creative Commons Attribution 4.0 International License. Based on a work at 
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---PAGE 52---

REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Research Article
Job-Related Challenges of Teachers with Physical Disabilities in 
Kumasi
Moses Danso-Afriyie, MS, Isaac Owusu, MA, Reindolf Anokye, MS, 
& Wisdom Kwadwo Mprah, PhD
Kwame Nkrumah University of Science and Technology
Kumasi, Ghana

Abstract: This study aimed to establish the job-related challenges of Teachers with Physical 
Disabilities (TWPD) within the Kumasi Metropolitan Education Unit in Ghana. Twenty-one 
(21) TWPDs completed the study. A cross-sectional study design was used and an interview 
guide was utilized to solicit responses. Thematic content analysis was employed in analyzing 
the data collected. Relative to the nature of impairment, 'pain' and 'weakness' emerged in 
relation to impairments associated with TWPDs. 'Mobility on school compound' and 'writing 
on the board' were specific task related challenges encountered by TWPDs. However, 
additional job-related challenges existed in the form of attitudinal barriers. Due to the 
prevailing job-related challenges, most TWPDs had employed specific coping mechanisms to 
offset some of the challenges. Prominent among these coping mechanisms were being 
dependent on others for physical support and taking frequent breaks from tasks that were 
physically demanding. Overall, most TWPDs asserted they felt disadvantaged compared to 
their colleagues without physical disabilities due to the numerous job challenges they 
encountered. In light of these, it is recommended that the Ghana Education Service (GES) 
should profile the respective work-related challenges of TWPDs to come up with policies and 
interventions that would gradually eliminate these challenges.

Keywords: Job-Related; Challenges; Teachers; Physical Disabilities; Kumasi

Introduction

      The term 'physical disability' (PD) is defined broadly to cover a wide range of 
disabilities and health-related issues, including both congenital and acquired disabilities 
(Belson, 2003). Conditions that may pass for physical disabilities include muscular dystrophy, 
leg-length discrepancies, amputations, third-grade nerve injuries, spinal cord injuries and 
chronic fatigue syndrome. Other conditions such as cerebral palsy, spina bifida, arthritis, 
multiple sclerosis, stroke and auto-immune diseases could lead to physical disabilities. PD 
typically manifests in the form of restrictions in physical activities including walking, ability 
to negotiate obstacles, difficulties with using common tools and equipment and easy 
fatigability (Cockerham, 2007).

      According to the World Health Organization (2011), of the one billion of the world's 
population that has a disability, 80 million of them live in Africa, 737,743 of those in Africa 
live in Ghana (Ghana Statistical Service, 2012). Nearly 150 million persons with disabilities 
in the world experience extremely dire difficulties in life.

      Persons with Physical Disabilities (PWPD) have different job-related experiences that 

---PAGE 53---

typically depend on the type of job and availability or otherwise of barriers/facilitators. 
Generally, PWPDs tend to face fewer challenges with jobs that are not physically demanding 
compared to jobs that demand more physical effort (Bredberg, 1999). The foremost challenge 
of most PWPDs relative to their jobs has to do with access to the workplace. The presence of 
barriers in the form of staircases, lack of elevators, lack of handrails and ramps at the 
workplace implies PWPDs expend more effort in reaching their respective offices. In research 
by Erb and Harriss-White (2002), the majority of PWPDs surveyed admitted to the presence 
of barriers that hindered their entry to their respective points of work. In a similar survey by 
Ghai (2003), women with physical disabilities conceded the presence of facilitators would 
greatly improve accessibility to their respective workplaces. On some rare occasions, the lack 
of accessibility to workplaces resulted in PWPDs being dependent on other co-workers to 
access their respective offices (Jeffery & Singal, 2008).

      Kalyanpur (2007) found that teachers within the New Delhi metropolis felt the lack of 
physical facilitators within their respective schools and the metropolis hampered their 
performance relative to classroom work. In research by Obiozor (2010), some teachers with 
disabilities felt that less was expected of them at their respective workplaces due to their 
disabilities. Although this attitude might appear empathic, most of the TWPDs felt it was 
because they were thought of as 'weak'.

      Teachers play a huge role in shaping and mentoring students not just for academic 
success, but for life in general. Challenges that have the potential to negatively impact the 
competence or work of teachers are likely to undermine the aforementioned mentorship role 
and endanger the academic success of students. Thus there is a need to thoroughly assess the 
job-related challenges of teachers with disabilities to proffer long-term solutions that would 
enhance the competence of these teachers as well as ensure their students do well 
academically.

Methods

Study Site

      The Kumasi Metropolitan Education Unit (KMEU) is responsible for 551 schools 
within the Kumasi metropolitan area in Ghana. These schools are made up of 158 
kindergarten schools, 205 primary schools, and 188 junior high schools. There are over 4,000 
teachers working in the metropolitan unit. TWPDs constitute of less than 1% of all teachers 
within the unit. The KMEU serves as the administrative center for these schools and ensures 
that the teaching and learning in these schools is consistent with the dictates of the Ghana 
Education Service (GES).

      Additionally, the Metropolitan Education Unit enforces the policies of the GES related 
to compensation of teachers with disabilities. Teachers with physical disabilities are entitled 
to a 'disability allowance' that is paid monthly as part of their monthly remuneration. 
However, there are no teacher-specific policies that are directed towards making the job of 
teachers with physical disabilities any friendlier at the Metropolitan Education Unit level. Job-

---PAGE 54---

related challenges of teachers with physical disabilities are typically reported to the highest 
school authority for remedial actions.   
 
Study Design and Approach

      A cross-sectional design and a qualitative approach was adopted for the study. Cross-
sectional design allows for studies to be conducted over a relatively shorter period of time and 
are usually cost-effective (Hatch, 2002). With respect to this study, a cross-sectional design 
was the best approach. A major disadvantage of cross-sectional design is the fact that the 
timing of the snapshot might not be representative of the study population (Creswell, 2009).

      Relative to this research, the emphasis was put on unearthing the 'meaning' of the 
work-related challenges of teachers in an in-depth manner. Thus the choice of a qualitative 
approach was the best option as it allowed for a free-flowing narrative in which teachers 
thoroughly expressed themselves. Additionally, adopting a qualitative philosophy allowed for 
more probing questions that the researcher might not have initially considered. The job-related 
challenges of TWPDs is a complex issue that ranges from the obvious such as physical 
barriers to the very subtle such as difficulties in using teaching materials. Other advantages of 
qualitative research include the fact that it is not limited to rigidly defined variables and draws 
on the compelling experiences of respondents (Creswell, 1998).

Study Population and Inclusion Criterion

      The study population consisted of all teachers with physical disabilities within the 
Kumasi Metropolitan Education Unit. The Metropolitan Education Office keeps information 
of all teachers with physical disabilities for policy and management purposes. Additional 
inclusion criterion involved teachers having practiced for at least a year. This was to ensure 
respondents had some level of experience in the rudiments of their work. Further to this, the 
aforementioned inclusion criterion raised the chances that respondents would have 
encountered some challenges relative to their work.

Sampling Technique and Size

      A purposive sampling technique was employed in this study to select teachers with 
physical disabilities. The aforementioned sampling technique allows a researcher to reach 
his/her targeted sample over a relatively short period of time, while allowing for a variety of 
research designs to be utilized (Morse et al., 2002). With respect to this study, TWPDs were 
the target participants and due to their relatively low numbers, a purposive sampling approach 
allowed for the majority of them to be included in the study. The disadvantages of purposive 
sampling include possible researcher bias in selecting participants and the lack of 
representativeness relative to the sample (Kuckartz, 2014).

      For qualitative research, samples must be large enough to allow for all unique 
perspectives on an issue to be covered. However, if the sample becomes too large, the data are 
likely to be repetitive and subsequently, superfluous.

---PAGE 55---

      The sample size for this study was based on the concept of saturation as espoused by 
Morse (2001). By this concept, saturation is achieved when adding more respondents to the 
study that does not add any new perspective to the information collected. With respect to this 
study, no new perspectives were discovered beyond the first 21 respondents. Relative to the 
nature of impairment, 'pain' and 'weakness' were repeated by three (3) respondents beyond 
the 21st respondent. Other issues that were repeated by the aforementioned respondents 
included challenges with mobility on school compounds and difficulties with teaching 
materials.

Research Instruments

      The study utilized an interview guide. Information relating to demographic 
characteristics of respondents was sought using closed questions while those related to the 
specific objectives of the research utilized open-ended questions. A major advantage of using 
an interview guide is the fact that it allows for easy flow of the conversation between the 
researcher and respondent while giving the opportunity for the researcher to ask more probing 
questions (Creswell, 1998). More probing questions were asked based on respondents' 
answers to specific questions. The essence of the probing questions was to unearth the 'true' 
meaning of respondents' answers which is consistent with qualitative research.

Report on the Pilot Study

      A pilot study was carried out to test the overall feasibility of the study as well as 
streamline the questions in the interview guide. The pilot study was carried out at the Ejisu 
Juaben Municipal Education Unit with 10 teachers with physical disabilities completing the 
interview schedule. It was discovered that respondents experienced varying impairments that 
were mainly associated with an arm or leg. Pain and weakness were the major manifestations 
of the underlying impairments. Pain, in particular, was discovered to interfere with the 
activities of TWPDs and on certain rare occasions, halted the execution of specific physical 
activities. The majority of respondents felt the impairment they experienced did not interfere 
with most of their job-related activities. A common improvised method employed by 
respondents in overcoming difficult physical activities involved soliciting the help of pupils.

      Physical barriers confronting TWPDs included inaccessible classrooms and a general 
lack of reasonable accommodation within classrooms. Specifically, staircases, non-adjustable 
seats, fixed writing boards were common physical barriers cited by TWPDs. Overly 
sympathetic behaviors from colleagues and students, students' fixation on teachers' physical 
disabilities, lesser expectations from higher authorities were some of the major attitudinal 
barriers pilot respondents admitted to. Most pilot respondents believed that the policies of the 
Ghana Education Service on TWPDs hardly addressed the challenges within the classrooms. 
In terms of the aforementioned challenges on the performance of TWPDs, most respondents 
felt the challenges did not negatively impact their overall competence as teachers.

      Overall the pilot study informed a re-arrangement of the questions in the interview 
guide to allow for a better flow of the conversations based on respondents' answers. 

---PAGE 56---

Additionally, it allowed the researcher to anticipate the explaining technical terms such as 
disability and impairment.

Field Data Collection

      Data collection for this study took approximately two months to complete. The 
interviews took place within the premises of respondents' respective schools. TWPDs chose 
the most convenient time to have an interview with the researcher. The interview sessions 
usually lasted 30 minutes per respondent with an audio recording of the entire session. 
Respondents first completed demographic questions, followed by the nature of their 
impairment and finally job-related challenges. Grey areas were clarified based on respondent's 
probing questions. Similarly, based on the respondent's answers, the researcher probed further 
in instances where answers lacked clarity.

Data Management and Analysis

      To ensure the integrity of data, all audio recordings were played back on the same day 
of recording by the researcher to ensure clarity of responses to questions. Additionally, all 
recordings were uploaded on google drive for backup purposes, safe-keeping, and easy 
retrieval.

      Data analysis involved thematic analysis that utilized the six procedures; 
familiarization with data, forming initial codes, identifying themes within codes, reviewing 
themes, naming themes and creating the final report.

      In the familiarization with the data stage, all audio recordings were transcribed 
verbatim into written format. Generating the initial codes involved identifying recurring 
patterns within the transcribed data. These recurring patterns were not based on mere words 
but based on the 'true' meanings of respondents' answers to questions. Within the initial 
codes, themes were further identified and the relationship between themes identified. 
Reviewing the themes involved establishing a link between the themes and the literature 
review undertaken for the research. This was to ensure that there was literature to support and 
expand the generated themes. The final report of the thematic analysis is reported in the next 
chapter and is consistent with research objectives.

Validity

      To ensure the validity of the interview guide, questions were made consistent with the 
study objectives. Questions were reworded in line with established concepts of disability and 
challenges usually encountered by persons with physical disabilities. Questions were 
exhaustive enough to cover all study objectives and put in simple clear language. Further to 
this, the research questions of previous studies related to the challenges of persons with 
physical disabilities by Bredberg (1999); Horstman et al. (2008); and Jeffery and Singal 
(2008) were thoroughly studied to ensure some of the questions asked in these previous 
studies were consistent with those in this study.

---PAGE 57---

Reliability

      The aforementioned pilot study ensured the reliability of the research instrument 
(interview guide). Grey areas of the interview guide were thoroughly rephrased and made 
consistent to ensure respondents were in no doubt as to the meaning of the questions. These 
grey areas were considered for modification whenever at least two pilot respondents sought 
clarity on a particular question. Specific questions that were modified to improve consistency 
included those related to attitudinal barriers, policies of the GES and the perceived 
disadvantages TWPDs encountered.

Ethical Consideration

      Ethical approval was sought and granted by the ethics committee of the Committee on 
Human Research, Publications and Research (CHRPR) of Kwame Nkrumah University of 
Science and Technology. Ethical approval was also sought and granted by the Kumasi 
Metropolitan Education Unit. Respondents and the researcher signed an informed consent 
form. The consent form detailed the process of the research, potential benefits as well as the 
potential harm that could arise from it. Pseudonyms were used to mask the identities of 
respondents while ensuring participants could be reached in case further clarification on 
responses was needed. Further to this, respondents were assured of their right to withdraw 
from the study at any time if they wished.

      Proper record keeping and storage ensured confidentiality of data related to 
respondents. Additionally, transcribed data were kept on the researcher's computer with a 
password.

Results

4.1 Socio-Demographic and Disability Characteristics of Respondents

      Table 1 presents the socio-demographic and disability characteristics of respondents. 
Males formed the vast majority (71.43%) of respondents. Less than a quarter (23.81%) of all 
respondents had a Diploma qualification, the remainder had a Bachelor's (61.90%) or a Post-
Graduate (14.29%) qualification. Lower-limb (leg) disability (71.43%) was the most prevalent 
form of disability. Nearly half (47.62%) of all respondents did not use an assistive device. 
However, lower limb assistive devices were the most commonly used (38.09%).

Table 1 Socio-Demographic and Disability Characteristics of Respondents
       
Age in years (Mean ± SD)
40.20 ± 4.5 
Gender
       
Male
15 (71.43%)
Female
6 (28.57%)

---PAGE 58---

Years of practice (Mean ± SD)
Highest educational attainment
 15 ± 6.41
       
Diploma
5 (23.81%)
Bachelor's degree
13 (61.90%)
Post-graduate degree
3 (14.29%)
Teaching Level
       
Primary
9 (42.86%)
Junior High
12 (57.14%)

A body part with disability
 
Upper limb (arm)
5 (23.80%)
Lower limb (leg)
15 (71.43%)
Trunk
1 (4.76%)
Type of assistive device
 
None
10 (47.62%)
Arm support
1 (4.76%)
Leg support
8 (38.09%)
Wheelchair
2 (9.52%)
      
Nature of Impairment and its Effects Among Teachers

      Relative to how the underlying impairment was manifested, two major themes 
emerged; 'pain' and 'weakness'. The majority of respondents felt that pain was a major 
debilitating factor in their respective physical disabilities. Respondents gave different 
accounts of the type of pain and the associated weakness they experienced. While some 
respondents described the pain as sharp and shooting, others suggested the pain they 
experienced was dull and aching. For some respondents, the occurrence of pain was 
occasional; while others explained the pain was more persistent and disrupted their everyday 
activities. Oduro stated that:

The feeling of pain from my right leg is the most difficult symptom I experience; the 
pain is present most of the time and I do not have to exert myself to experience it.

---PAGE 59---

      Kofi stated:

I experience a dull aching pain that makes me weak in the left elbow and shoulder 
when I raise my arm; the pain is usually severer in the mornings compared to other 
times of the day.

      Most respondents with lower limb physical disabilities further alluded that the pain 
experienced in the affected limb typically radiated to the lower back as well. This 
phenomenon, they believed was due to the compensatory mechanisms they adopted in order 
to overcome the physical challenges associated with their respective disabilities. Mansa 
reaffirmed:

Due to the state of my right leg being shorter than the left, I tend to put more weight 
on the right half of my body. This has resulted in my spine taking a more curved 
appearance and as a result, I feel lots of pain in my lower back.

      Additionally, the vast majority of respondents believed the pain and associated 
weakness affected their overall physical endurance to such an extent that they were unable to 
cope with numerous everyday physical activities. As noted by Kwame:

Due to the constant pain and weakness in my left thigh, I do not feel fit at all as I 
easily get tired walking the shortest of distances.

      Beyond the symptoms associated with the primary impairment, another trend that 
emerged was pain and weakness that were associated with the use of assistive devices and 
compensatory mechanisms. For example, a good number of respondents with lower limb 
physical impairments who utilized axillary crutches as assistive devices reported experiencing 
painful shoulders due to pressure from the axillary crutches as Kwadwo highlighted:
Aside from the pain from my leg, I do experience lots of pain from my right shoulder 
due to the fact that I have been on these crutches for several years.

Job-Related Challenges of Teachers

      In relation to the specific job-related tasks that proved most challenging, 'mobility on 
school compound' and 'writing on the board' emerged as major themes. Teachers explained 
that they encountered numerous physical barriers within school compounds that impeded their 
movements between classrooms. Prominent among these physical barriers were uneven 
floors, lack of concrete floors, lack of ramps, and presence of staircases at the entrances to 
some classrooms.

      Uneven floors generally made the use of assistive devices very difficult. On some 
occasions, the imbalance it produced led to the tripping of some teachers on axillary crutches, 
with the potential for serious injury. Amponsah succinctly explains:

My biggest job-related challenge is movement on the school compound with my 
crutches, the uneven floor makes me lose balance occasionally and I have actually 

---PAGE 60---

fallen thrice since I started work.

      Additionally, respondents explained that the lack of concrete floors in some schools 
made it extremely challenging to use assistive devices as well as increased their chances of 
tripping. This situation was made worse on days when it rained, as there was virtually no grip 
between the floor and the tip of walking aids. The lack of ramps on school compounds made it 
extremely difficult for teachers to navigate their way around school compounds. Among 
respondents, wheelchair users complained the most about the lack of ramps on school 
compounds; however, teachers who utilized crutches equally explained the lack of ramps and 
presence of staircases posed serious ambulatory challenges for them. Afia, who uses a tricycle 
propelled with the upper limbs, asserted:

With my tricycle, I usually have to switch to crutches and get the assistance of another 
person before I am able to negotiate the staircase in front of my classroom.

      With respect to the challenges of writing on classroom boards, nearly all respondents 
admitted to one challenge or the other. For respondents on axillary and elbow crutches, the 
relatively higher placed boards meant they were unable to have the maximum support of their 
respective assistive devices as they had to stretch to write on the board. Akenten captured this 
as:

Writing on the board poses a lot of problems for me as I have to lift my arm from my 
elbow crutches while I reach for the board; this makes me feel highly unstable with 
respect to my balance.

      For respondents who utilized wheelchairs, the situation was even worse. They 
admitted to being able to use only the lower margins of writing boards within their respective 
schools due to the fact that the writing boards were fixed and not adjustable.

      Beyond task-specific challenges, other challenges for teachers with physical 
disabilities existed, mainly in the form of attitudinal barriers. However, most teachers 
admitted stigmatization of their respective conditions was rare at the workplace. Rather, it was 
an avalanche of 'sympathy from colleagues and students' that they believed negatively 
affected their respective work. This overly sympathetic attitude, they asserted, led to 
colleagues, students, and superiors expecting less from them. As captured by Kwame:
Consistently when I present my lesson notes to the headmaster, he tends to pass it off 
quickly while he does a lot of criticism on that of my colleagues. Initially, I felt it was 
because my notes were better, only to detect that I committed the same errors as my 
colleagues.

      Most teachers felt the attitude of expecting less from them generally made them feel 
helpless and acted against building their confidence. Sympathetic behavior from other 
teachers and students often came in the form of unsolicited physical support. Teachers 
complained that on most occasions when they tried some physical tasks, there were numerous 
colleagues and sometimes students on hand to take over. While a few teachers with physical 

---PAGE 61---

disabilities thought this attitude was beneficial to them, the majority felt it negatively 
impacted on their confidence in terms of executing physical activities.

      With respect to specific Ghana Education Service (GES) policies towards teachers 
with physical disabilities, most respondents thought they were woefully inadequate. Beside a 
paltry 'disability allowance' that is paid as part of their monthly salary, teachers felt the 
barriers hampering their work in their respective schools were hardly addressed. Teacher 
specific challenges such as inaccessible classrooms due to the lack of ramps, non-adjustable 
writing boards and inaccessible washrooms that had been reported to the GES by headmasters 
had largely not been addressed. Teachers explained that headmasters often alluded to the fact 
that the GES does not have readily available funds to eliminate the aforementioned barriers, 
but with the introduction of inclusive education, most of these barriers would be removed. 
However, with the passage of time and the deadline for all schools to be fully inclusive having 
expired, teachers are yet to see any concrete measures relative to the removal of work-related 
barriers.

Coping Mechanisms Adopted by Teachers

      Teachers admitted to employing numerous improvised methods to overcome the 
difficulties associated with specific work-related tasks. 'Support from colleagues and 
students' and 'taking frequent breaks' were the major themes that emerged. Teachers admitted 
to being dependent on colleagues on occasions when they had to negotiate physical barriers to 
their respective school compounds. This dependence often came in the form of physical 
support which occasionally required more than one colleague. Kumi stated:
To make my way to the staffroom, I usually have to wait on my colleague who 
sometimes calls in a second colleague due to the fact that the staircase leading to the 
room is quite expansive.

      With respect to making maximum use of the writing boards, teachers who reported 
difficulties admitted soliciting the support of students. These students often wrote on the 
board for the teachers while class was in session.

      Taking occasional breaks from specific tasks was equally an effective strategy used by 
some teachers in order to overcome specific work-related tasks. These teachers explained that 
they often took breaks to relieve themselves of the severe discomfort they felt in performing 
those activities. Teachers generally admitted the aforementioned improvised methods were 
often successful but came at a huge cost. As Kumi stated:

Due to the fact that I mostly wait on my colleagues before accessing the staffroom, I 
usually lose several minutes and sometimes a whole hour of work at the office.

---PAGE 62---

Effects of the Challenges on the Work of Teachers with Physical Disability in 
the Kumasi Metropolitan Education Unit

      Professionally, teachers generally felt they were 'somehow disadvantaged' due to their 
physical disabilities. They recounted numerous opportunities they missed due to their 
respective physical disabilities. Opportunities for professional development, workshops and 
seminars were missed because school authorities felt they were too physically demanding for 
TWPDs. Additionally, teachers felt their chances of a transfer to a desirable school were 
greatly reduced as the school would have to be closer to their residence. Oforiwa emphasized 
that:

There are some few schools within the metropolis with great opportunities that would 
have enhanced my career, but they are quite far from my residence and as such 
working there would be challenging.

      The vast majority of teachers equally felt they wielded less influence in terms of 
exerting control of their respective classes. This they believed was due to their limited 
mobility which sometimes made it difficult for them to enforce class rules. Additionally, they 
admitted the fact that they depended on students to run numerous errands did impact on 
enforcing strict class rules. Yaw put it as:

I honestly find it difficult strictly enforcing the class rules, as a rule as I generally have 
a liberal relationship with the majority of my class members; they help me out on a lot 
of physically demanding tasks.

      In spite of the numerous improvised methods teachers employed to minimize the 
effects of their respective physical disabilities; most teachers believed they would have 
performed a lot better on their respective subjects if the appropriate physical facilitators were 
in place. Kwadwo explained that:

My job as a mathematics teacher demands I write a lot of illustrations on the board; 
due to the relatively higher position of the board, I am forced to stand over extended 
periods of time. This makes me very tired and affects my overall performance.

      In relation to punctuality, most teachers asserted they were usually 'punctual' despite 
the numerous physical barriers they encountered. Adopted strategies to avoid lateness 
included setting off early and avoiding congested areas when heading for their respective 
schools. Further to this, most teachers admitted their respective physical disabilities rarely 
made them miss school.

      In spite of the several challenges, most teachers felt they were 'competent' in their 
respective roles. They explained that the stellar academic performance of their respective 
classes was proof that the underlying physical impairment and associated challenges had not 
affected their competencies. Personally, most teachers admitted to being 'confident' of their 
abilities as teachers and recounted how they are able to partake in organizing co-curriculum 
activities such as sports. Kumi asserted:

---PAGE 63---

I honestly believe I am as competent as any of my colleagues; over the past years 
students taking my course have generally done well and I am able to accomplish most 
co-curriculum activities assigned me.

Discussion

      The high incidence of pain among TWPDs is consistent with the findings of Wade and 
de Jong (2000) who reported pain to be one of the most common debilitating occurrences 
affecting persons with physical disabilities. The issue of pain has a number of implications. 
Firstly, the uncomfortable nature of pain could further derail the levels of physical functioning 
of affected teachers as more effort is expended on routine activities when working through the 
pain barrier. Thus a vicious cycle sets in which TWPDs who find physical functioning quite 
demanding are further compromised by pain. This is likely to give rise to fatigue with the 
potential to impact on the overall work performance of affected teachers. This phenomenon 
probably explains why the majority of TWPDs who experienced pain equally reported 
weakness as a concomitant debilitating factor. Secondly, as posited by Muse (2002), long-
term pain has the potential to make affected persons irritable, short-tempered and impatient. 
The aforementioned negative attributes could undermine their work and more importantly, 
negatively impact the academic performance of their respective students.

      Pain associated with the usage of assistive devices could cause TWPDs to use those 
devices less frequently. It is also possible for some TWPDs to completely abandon such 
assistive devices (Phillip & Zhao, 1993). Indeed, this could be responsible for the relatively 
higher number of respondents in this study who did not employ an assistive device. As posited 
by Ostir et al. (2002) assistive devices generally enhance the functional independence of 
persons with disabilities by providing additional support, boosting feelings of safety and 
raising confidence. Thus in both instances, affected teachers are likely to lose some level of 
functional independence and are likely to depend on the physical support of others with long-
term negative implications for their respective jobs. Additionally, non-usage of assistive 
devices could give rise to more compensatory gait mechanics such as 'stooping' with the 
possibility of inducing more pain.

      The general absence of physical facilitators such as walkways, ramps, curb ramps and 
handrails within the environs of TWPDs could equally account for nearly half of respondents 
who did not use assistive devices. As asserted by Sah (2010), assistive devices should be 
coupled with the provision of facilitators to allow for the optimal physical functioning of 
PWPDs. For example, teachers using wheelchairs, walkways would ensure there was 
sufficient space for mobility while curb ramps would ensure they were able to join adjoining 
roads. In the absence of these facilitators, the use of a wheelchair for mobility is extremely 
difficult and on some occasions, virtually impossible. Accommodations for teachers, 
including ramps and better flooring, would help students as well as visitors to the school. As 
such they can be perceived to be more cost-effective than they might seem if the focus was 
only on teachers.

---PAGE 64---

      As asserted by Bredberg (1999), PWPDs generally find jobs that are 'physically 
demanding tough to cope with'. Teaching, by its very nature, demands constant interaction 
with students and the school environment that may prove physically demanding. Difficulties 
with mobility on school compounds due to the lack of facilitators suggests that affected 
teachers were less mobile on campus due to possible discomfort associated with mobility. 
This could have a negative impact on building interpersonal relationships with colleagues. 
Such interpersonal relationships are important for teachers to share ideas and relieve job-
related stress. As espoused by Mayo et al. (1999), in the absence of interpersonal relationships 
at work, feelings of depression and helplessness could set in and negatively impact the work 
of teachers. On occasions where affected teachers are obliged to move, such as having a class 
in an adjacent block, uneven floors, and lack of ramps could raise the risk of tripping with 
possible injuries that could derail the health of the affected TWPDs. As reaffirmed by the 
Heart and Stroke Foundation (2017), facilitators do not only ensure better physical 
performance by PWPDs but ensure their safety as well.

      On the other hand, the lack of facilitators such as ramps, as deduced by Jeffery and 
Singal (2008), could force teachers to be dependent on other people for their mobility. These 
teachers are likely to be stranded or lose precious time on the days that these persons are not 
readily available. Further to this, teachers, being dependent on other people for mobility feeds 
into the perception that PWDs (including affected teachers) are helpless and mask the issue of 
a lack of facilitators.

      Additionally, decreased mobility among TWPDs, as suggested by Horstman et al. 
(2008), could give rise to physical deconditioning in which the affected teachers' physical 
endurance further diminishes due to the lack of physical activity. This could have long-term 
negative implications for affected teachers' ability to move, even when utilizing assistive 
devices.

      The widespread issue of difficulties with using the writing board is of grave concern as 
it is a basic tool of communication between teachers and students. Teachers in wheelchairs 
who utilized only the lower margin of the writing boards suggests that these teachers had only 
a limited space to share information with students. In the absence of teaching assistants, these 
teachers are likely to utilize the services of some students in writing out notes on the board. 
This unorthodox approach would likely have a negative impact on teaching and learning. The 
student who volunteers to write on the board would have to make extra time to write out 
his/her personal notes. This has the tendency to affect the general class organization as well as 
burden those students who volunteer to write on the board. For teachers who felt unstable on 
their crutches due to the fact that they had to stretch to reach relatively high writing boards, 
the situation puts them at risk of falling due to the lack of body balance created. Moreover, 
affected teachers were likely to be fatigued as it takes more physical effort to maintain their 
balance without the maximum support of their crutches.

      Improvised methods by TWPDs such as taking occasional breaks suggest these 
teachers took a longer time to accomplish work-related tasks. On occasions where time was 

---PAGE 65---

limited, affected teachers were likely not to accomplish these tasks with the potential to affect 
their overall performance as well as that of their students.

      As asserted by Minow (1990) sympathetic behavior towards PWDs are usually 
founded on the perception that such persons are helpless. Sympathetic behavior from 
colleagues and school authorities expecting less from TWPDs could negatively impact their 
overall competencies as teachers. For example, lesson notes are strictly planned based on 
curriculum content, student needs, and teaching strategies. Subsequently, if these lesson notes 
are not thoroughly inspected by the appropriate authorities as admitted by some respondents, 
teachers are bound to develop a lacklustre attitude towards such an important exercise. With 
the passage of time, this lackluster attitude becomes entrenched and has the potential to 
negatively impact affected teachers' professionalism. Additionally, students' academic 
performance could suffer if teachers' competencies are compromised.

      Sympathetic behavior towards PWDs tends to discount their contributions and 
frustrates their efforts in improving their work output (Nambissan, 2000). For hardworking 
TWPDs who get results, the sympathetic behavior could mean they are not appreciated as 
their outputs are never critically examined. Subsequently, there is no motivation to improve.

      The lack of policies by the Ghana Education Service (GES) to address specific 
problems encountered by TWPDs implies these problems are likely to linger on over the long 
term. As the regulatory body responsible for the management and development of schools and 
their human resources, the lack of clear-cut policies on catering for the needs of teachers with 
disabilities implies school authorities are at a loss as to whether to report on barriers 
hampering such teachers. For school authorities who take the initiative to report on such 
issues, the lack of clear-cut policies on supporting teachers with disabilities means the GES 
does not have the budget to support such reports. The reports become mere formalities and 
over time, school authorities are likely to give up and not forward these reports to the GES. 
With respect to TWPDs, this situation creates a feeling of hopelessness and could lead to 
psychological problems alongside the pertaining physical challenges. The disability allowance 
paid to TWPDs does little to solve the numerous challenges confronting teachers as they are 
meant for personal use while the majority of the aforementioned challenges confronting 
teachers are job-related.

      The general feeling of being disadvantaged by TWPDs is a testament to the 
widespread barriers (both physical and attitudinal) they faced relative to their jobs. The 
numerous professional development opportunities missed by TWPDs points to the fact that 
school authorities view the challenges confronting these teachers as emanating from them and 
not due to the lack of facilitators, alluding to the normal-abnormal categorization as espoused 
by Lányi et al.(2004). In the aforementioned categorization, the barriers associated with 
disability (including physical challenges) emanate from the individual person with a disability 
and the expectations for he/she to cope.

      TWPDs admitting to having less control of their respective classes due to their lack of 
mobility within classrooms have far-reaching implications for their respective jobs. Firstly, 

---PAGE 66---

the situation of lack of class control could lead to students not having the full import of 
lessons as a class could potentially be easily disrupted. Additionally, classroom misbehavior 
such as avoidance of work, clowning, harassing classmates, verbal abuse and defiance could 
become entrenched with the passage of time. The aforementioned misbehavior on the part of 
students would most likely negatively impact on the academic performance of students while 
creating the impression TWPDs were not up to the task.

      Subject-specific challenges of TWPDs due to the lack of physical facilitators could 
demotivate teachers and affect students' enthusiasm towards those subjects and subsequently 
their academic performances on those subjects. Despite teachers believing they were 
competent and alluding to the stellar academic performances of their respective students, the 
existence of subject-specific challenges implies students' performance in these subjects could 
improve if the associated barriers were eliminated. Additionally, the persisting physical 
challenges in teaching these subjects could force affected teachers to adopt less stressful 
postures towards those subjects. For example, in the classic case of Nkansah the mathematics 
teacher, taking a seat and utilizing the lower margin of the writing board would be more 
comfortable than the prolonged standing he has to endure. However, this is likely to 
negatively impact on his lesson delivery as teaching mathematics requires writing out 
systematic illustrations in order for students to comprehend the concepts.

Limitations

      A major limitation of the study is the fact that the relatively small numbers of TWPDs 
available in the Kumasi Metropolitan Education Unit would not allow for the application of 
probability sampling, thus limiting the extent to which the study findings could be 
generalized. Also, there are no such studies on TWPDs available in developing countries to 
compare with the findings from this study.

Conclusion

      In conclusion, the numerous job-related challenges TWPDs encountered in this study 
mirror the challenges of PWPDs in Ghana in which issues of disability and disablement are 
often not prioritized by policymakers. This is often exacerbated by cultural stereotypes in 
which PWDs (including TWPDs) in general are seen as helpless and needing the support of 
others. Thus a vicious cycle is created where the absence of facilitators make TWPDs more 
vulnerable, and consequently, adopt unorthodox means of overcoming the barriers to their 
respective jobs. This, in turn, reinforces the stereotypes against them and masks the real issues 
militating against their respective jobs.

Recommendations

      In light of the findings of inadequate policies by GES, it is recommended that the 
GES, in addition to collecting information on TWPDs, should profile their respective work-
related challenges. This profiling would give a vivid description of the varied and respective 
physical challenges that could form the basis of long-term policies towards eradicating the 

---PAGE 67---

numerous barriers that confront these teachers. Additionally, the profiling would allow for 
prioritizing some challenges over others in the face of a limited budget. For example, issues of 
accessibility to the workplace could be prioritized over classroom challenges if it is 
discovered more teachers have challenges with accessing the workplace. Thus with the 
passage of time, most barriers would be removed in order of their respective frequency of 
occurrence among teachers. This profiling should commence as soon as feasible and should 
directly involve officers of the GES and TWPDs.

      Secondly, the GES, with its' specialist disability staff could embark on sensitization 
programs on the concept of reasonable accommodation within the various schools. This 
would ensure stakeholders (including teachers, headmasters, and Parent-Teacher 
Associations) contribute to interventions that would ensure the gradual removal of the 
numerous barriers confronting TWPDs. For example, PTAs of the respective schools could 
possibly raise funds to procure adjustable writing boards that would cater for the difficulties 
associated with writing boards confirmed by some TWPDs. This sensitization program could 
be carried out once a year by the respective schools within the metropolitan education unit.

      With respect to the avalanche of sympathetic behavior towards TWPDs, advocacy on 
the social construction of disability would help improve stakeholders' attitudes towards 
TWPDs. Stakeholders should be made to understand that if the appropriate facilitators are in 
place, TWPDs could be physically independent. Thus the avalanche of sympathy is 
misdirected as TWPDs are not primarily responsible for the physical challenges encountered. 
Disability campaigners, for example Disability Talkers in Kumasi, would be a very 
appropriate body to embark on the aforementioned advocacy. This could be done through 
seminars periodically and should commence as soon as feasible.

      The finding that TWPDs missed out on a number of professional development 
opportunities suggests forming a self-help group, this could work to increase their chances of 
professional development. Firstly, the self-help group could lobby organizers of teacher-
related workshops and seminars to make provisions for TWPDs while engaging school 
authorities to nominate them for such endeavors. Additionally, self-help groups could enable 
TWPDs to share valuable experiences that would enhance their roles in their respective 
schools. The self-help group could be formed as soon as feasible.

      Furthermore, the problems related to difficulties with writing on the board, could be 
handled with technological accommodations that are now relatively cheap to provide. The 
Ministry of Education could support this initiative by making the technologies available.

Moses Danso-Afriyie, MS, is a young man who was born in a small community known as 
Kwamang within the Bekwai Municipality of the Ashanti Region of Ghana. He is a teacher by 
profession, who has been teaching Information and Communication Technology for the past 9 
years at the Junior High School Level in Ghana. He currently holds a Master of Science 
degree in Disability, Rehabilitation and Development.

Isaac Owusu, MA, is presently a lecturer at the Kwame Nkrumah University of Science and 

---PAGE 68---

Technology. His research interest areas include disability studies and inclusion. He has 
published articles in peer-reviewed journals in Disability and Public Health.

Reindolf Anokye, MS, is a Social Worker, Social entrepreneur and a Biostatistician. He 
studied social work, sociology and history at the University of Ghana and has recently 
completed a Master of Science degree program in Disability, Rehabilitation and Development 
at the Kwame Nkrumah University of Science and Technology. He is presently pursuing a 
PhD program at Edith Cowan University in Australia. Reindolf Anokye does research in 
social policy, social work, disability and health.

Wisdom Kwadwo Mprah, PhD, is a lecturer at the Centre for Disability and Rehabilitation 
Studies, Department of Community Health, School of Medical Sciences, Kwame Nkrumah 
University of Science and Technology, Kumasi, Ghana. He holds a Diploma (Education), 
Bachelor of Arts (Geography), and Master of Philosophy (Geography) from the University of 
Cape Coast, Ghana, and PhD (Disability Studies) from the University of Illinois at Chicago, 
USA. Dr. Wisdom Kwadwo Mprah has conducted research, both locally and internationally, 
in the areas of Education and the Sexual and Reproductive Health experiences of Persons with 
Disabilities. He is also interested in the participation of persons with disabilities in 
employment and politics. He has published in more than 15 peer-reviewed journals and is also 
a reviewer of the African Journal of Disability, Disability, CBR & Inclusive Development, 
British Journal of Visual impairment and International Journal of Inclusive Education. He is 
an active member of the Ghana National Association of the Deaf and the Ghana Federation of 
Disability Organizations and has tremendously impacted on the operations of these 
organizations.

Disclosure Statement

No potential conflict of interest was reported by the author.

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Job-Related Challenges of Teachers with Physical Disabilities in Kumasi by 
Moses Danso-Afriyi, Isaac Owusu, Reindolf Anokye & Wisdom Kwadwo Mprah is licensed 
under a Creative Commons Attribution 4.0 International License. Based on a work at 
https://rdsjournal.org. Permissions beyond the scope of this license may be available at 
https://www.rds.hawaii.edu.
      
---PAGE 71---

REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Creative Works
Ku Kanaka: Stand Tall
A Conversation with Filmmaker Marlene Booth
(with RDS Multimedia and Creative Works Editor, Raphael Raphael)
Raphael Raphael, PhD
Review of Disability Studies: An International Journal Associate Editor of Creative Works 
and Multimedia, University of Hawaii at Manoa
Guatemala

Abstract: In this short interview, filmmaker and educator Marlene Booth discusses her work 
on the documentary Ku Kanaka: Stand Tall about the life of disabled Native Hawaiian activist 
Kanalu Young. She also discusses her friendship with Young as well as her own creative 
practice.

RR: What initially inspired you to create Ku Kanaka: Stand Tall?

MB: I had worked with Kanalu Young on an earlier film, Pidgin the Voice of Hawai?i. As we 
were finishing that film, Kanalu passed away. I found myself thinking about Kanalu and how 
he became the man he was. Eventually, I decided that I wanted to make a film about him.

RR: Can you say a bit about your personal experience knowing and working with 
Kanalu before creating a film about him?

MB: I first met Kanalu in 2000 when we both served on a panel judging film proposals for 
possible funding. Our reactions to potential projects were quite similar, and I approached 
Kanalu after the panel asking if he would consider working together on a documentary film. 
Without a second's hesitation, he said, "yes!"

It took us a while to find a topic and to establish a rhythm in our work - he was teaching full 
time at the University of Hawai'i - I was new to Hawai'i and working as an independent 
filmmaker. Initially we thought we would make a film about the rebirth of the Hawaiian 
language. After we did a considerable amount of research on that topic, Kanalu, who loved 
the Hawaiian language, changed his mind. He felt strongly that we should produce a film 
about Pidgin English in Hawai'i, a topic I knew little about. When I asked him why he wanted 
to change the focus of our film from Hawaiian to Pidgin, this very proud Hawaiian man 
answered, "Without Pidgin, I would cease to be whole."

The power of that response struck me, and in fact, we changed the subject of our film to focus 
on language and identity in Hawai'i. Pidgin: The Voice of Hawai'i became in many ways 
Kanalu's loving homage to the fusion language of Hawai'i's working people including 
Kanalu's father, George, and many members of his extended family.

Working with Kanalu was wonderful and challenging. Kanalu?s physical condition was 
always changing. Though we had hoped that he would be able to conduct interviews for the 
film, he was unable to go on location. He had developed pressure sores and needed to spend 

---PAGE 72---

his non-teaching time in bed healing. He held court - and office hours for his students - in his 
bedroom, and I would meet him there to talk about the film, about Hawaiian history, and 
about language and identity. He insisted that I sit in on his course, "Hawai'i: Center of the 
Pacific," so I could learn the basics of Hawaiian history and culture. Later, he encouraged me 
to sit in on his seminar about Hawaiian institutions.

We became friends through his teaching me about Hawai'i, both formally in his classes and 
informally as we talked story in his bedroom office.

As Noelani Goodyear-Ka'opua says in the film, "He saw himself as a student and a teacher at 
the same time." He was always learning and teaching.

RR: I would like to ask you a bit about the journey of creating this film:

      RR: How long did it take to bring the film from concept to completion?

      MB: It took about four years to bring the film from concept to completion.

      RR: What were some of the main challenges in bringing it to life?

MB: There were two main challenges in bringing Ku Kanaka: Stand Tall to life, and 
they were in some ways related. The first challenge was finding the funds to make the 
film. I wrote several grant proposals applying for funding, and I didn't always succeed 
the first time around. When I was rejected, it often seemed as though readers of my 
proposals could not 'see' the film I envisioned, and, frankly, it took me a while to see 
and write persuasively about the film I wanted to make.

The other big challenge was my finding my way through an abundance of materials - 
interviews with Kanalu, still photos, writings, recollections of family, friends, 
colleagues, teachers, creative writings - to find a story that felt true to Kanalu. In this 
journey, Kanalu's great friend and colleague, Jon Osorio, was a huge help. He knew 
Kanalu well and he knew Hawaiian history well, and he was able to see - and to help 
me see - the connections in the life stories of both.

RR: The portrait you present of Kanalu as a teacher, a learner and an activist is unlike 
anything viewers are likely to have ever seen. What would you like viewers to come away 
with as far as their deepened understanding of Kanalu's life and his activism and the 
ways in which disability was part of that?

MB: I'd like viewers to come away understanding that Kanalu's activism defined his identity 
as a Native Hawaiian man with quadriplegia. In the early years following his diving accident, 
he became a leader in the beginnings of the wheelchair sports movement in Hawai'i. He loved 
being part of a group of people whose lives looked like his - he was a beloved member of a 
large, extended family - and when the Hawaiian Movement grew, he found even more room 
for himself as a proud Native Hawaiian patriot with a disability. Being both disabled and 

---PAGE 73---

Native Hawaiian expanded his life, and he was grateful to see and live in the world through 
that expanded vision.

RR: Turning to some of your creative choices in the film: In other dominant 
representations of disability in film, the accident that precipitates a person's disability is 
often presented very dramatically. For example, in Me Before You (2016), when the main 
character is hit by a motorcycle, the audience is treated to a loud screech, a wide shot of 
the motorcycle approaching the character, and a medium close-up of the character 
turning in slow-motion all in a span of a few seconds. Ku Kanaka: Stand Tall treats 
Kanalu's life-changing accident very differently: Kanalu's accident is connected to a 
shot of a boy diving into the ocean as a calm ukulele track is played in the background. 
The transition to the details about the aftermath of the accident is signaled by the fading 
out of the ukulele track and a low, yet soft boom noise. Can you share with readers a 
little bit about your creative choices here as the director of not presenting the moment of 
Kanalu's accident in a highly dramatic way?

MB: In deciding to present Kanalu's diving accident the way I did, I was influenced by my 
friend Katharina Heyer, a wonderful professor of political science and disability studies who 
dissuaded me from putting Kanalu's accident front and center in the film. Kanalu's diving 
accident took place in the calm waters of the Pacific - in the same place we see the young 
divers in the film - and once he hit his head, it took his young friends a while to understand 
that he had been injured. The accident changed Kanalu's life forever, but he understood it as 
both a sudden, dramatic change and a change which took years to assimilate. In his own life, 
his disability was a fact because Kanalu's disability was visible; he didn't need to talk about 
it. For him, I think, his accident meant loss, acceptance, and assimilation to a new identity. 
His ability to assimilate newness, not just in identity but in ideas too, made him a person open 
to all kinds of people, ideas, and approaches to living. To have overdramatized his accident 
would have misrepresented who Kanalu was.

RR: Were there any other aspects of his life that you set out to consciously present 
differently from how disability is frequently presented in film and media? (Perhaps 
including some things that are frequently overlooked or ignored and perhaps excluding 
others?) 

MB: Because Kanalu's disability was visible he did not need to talk about it. You knew upon 
seeing him that he was in a wheelchair. Seeing Kanalu physically made an impact. When he 
entered a room in his electric wheelchair, you heard him coming. Once you saw him, you saw 
him expertly maneuver his chair. If he was part of a presentation that called for the Hawaiian 
protocol of chanting, it was his voice that drew your attention. If you heard him lecture, you 
paid attention to his eloquence and speaking voice and to his wit. There was so much about 
Kanalu that was large and broad. Disability was one of those things.

If I'd known before he passed away that I would be making a film about him, I would have 
filmed him more with other people. He commanded a group, not by assuming control but 
because other people looked to him to lead. He was smart, kind, compassionate, funny, 

---PAGE 74---

stubborn, honest, and fair. Though he occasionally nodded off - don't we all? - to be in his 
presence was to be with someone alive on all burners. He was alert to other people, and he 
always listened in a way that let you know you had been heard.

RR: Can you speak a bit to the ways in which Kanalu connected his own embodied 
experience with the native Hawaiian experience?

MB: Kanalu felt that if he, a man in a wheelchair, could be an activist, so could anyone. I'm 
paraphrasing here, but he once spoke of language and history as weapons in a war for cultural 
survival. At the same time, he also spoke of the Hawaiian movement as being broken and in 
need of repair, and he compared himself to that. He felt he understood Hawaiian trauma in his 
being since both he and his nation had suffered trauma and emerged with an identity tempered 
but with resilience. As Jon Osorio says in the film, "the kind of trauma imposed on our people 
could be compared to the trauma of Kanalu's accident. You could say that it really changed 
the trajectory of where we were headed as a nation, as a people." Of course, Kanalu's accident 
changed his trajectory too, and he would have argued it was that change that made him who 
he was.

RR: Thinking about your own larger practice as an artist and teacher (and perhaps 
your own mission(s) in your work), how do you place your film Ku Kanaka: Stand Tall 
within this?

MB: I learned from Kanalu in making Ku Kanaka: Stand Tall that there are embodied 
languages, every bit as eloquent as those we speak. I like to tell stories. All my films in some 
way deal with language, identity, and stories of extraordinary people whom we may often 
overlook. Ku Kanaka: Stand Tall taught me through Kanalu's story, that identity is complex, 
multi-dimensional and, in the best case, expansive.

RR: Is there anything else you would like to add about the film?

MB: Kanalu was someone who, though he loved being on stage, did not like to call attention 
to his accomplishments. He drew a distinction between American rugged individualism and 
what he called Hawaiian rugged groupism. He loved that groupism and understood that not 
only his life but his sense of himself depended on it. Without his family, his students, and his 
Hawaiian community, he would not have been able to recover and move forward with 
confidence. He felt that his accomplishments--and they were many--came about not by his 
effort alone but by the constant embrace of those who knew he acted not for self-
aggrandizement but for the betterment of all.

RR: Any upcoming/current project(s) you are most excited about that you would like to 
mention?

MB: At the moment I'm busy working on getting Ku Kanaka: Stand Tall into classrooms and 
other settings where people with stories similar to Kanalu's can use it. Within reason, I'm 
happy to go anywhere to speak about Kanalu and the film.

---PAGE 75---

For institutions subscribing to Kanopy, Ku Kanaka: Stand Tall is available at the following 
link: http://www.kanopy.com/product/stand-tall-ku-kanaka

The DVD of Ku Kanaka: Stand Tall and streaming options are also available at New Day 
Films: https://www.newday.com/film/k%C5%AB-kanakastand-tall

Ku Kanaka: Stand Tall A Conversation with Filmmaker Marlene Booth by 
Raphael Raphael is licensed under a Creative Commons Attribution 4.0 International License. 
Based on a work at https://rdsjournal.org. Permissions beyond the scope of this license may be 
available at https://www.rds.hawaii.edu.
      
---PAGE 76---

REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Notes from the Field
Call for Proposals - CONNECT #PacRim2020
Genesis Leong
University of Hawaii at Manoa, Center on Disability Studies
Hawaii, United States

The University of Hawaii at Manoa, Center on Disability Studies, in the College of 
Education, is accepting presentation proposals to be featured at the 35th Annual Pacific Rim 
International Conference on Disability & Diversity at the Hawaii Convention Center, March 
2-3, 2020. Submissions are being accepted from June 1, 2019-December 1, 2019 at 
www.pacrim.hawaii.edu.

The theme of the conference is CONNECT to Create Opportunities. Pac Rim 2020 will 
connect individuals in the field of disabilities, to build relationships and partnerships between 
Hawaii and the global community.

Pac Rim 2020 will feature presentations that showcase best practice, research, and community 
policies & planning to improve outcomes for individuals with disabilities. Presentation 
formats include: 2-hour poster presentations, 30-minute shared presentations, 60-minute 
breakout presentations, multi-hour interactive workshops, keynote speakers, and much more. 
Conference topics include:

-INCLUSION An inclusive community promotes and sustains a sense of belonging; it 
values and practices respect for the talents, beliefs, backgrounds, and ways of living of 
its members.

-EMPLOYMENT Employers and human resources staff need help understanding 
reasonable accommodations;, and expectations for employment must be raised through 
specific training and supports.

-HEALTH & WELLBEING A balanced lifestyle and optimal health is a goal for us 
all throughout our lives. At-risk groups have difficulty finding balance because the 
focus may be on disability and not holistic and healthy lifestyle.

-POSTSECONDARY EDUCATION Many factors influence a successful transition, 
these include the type and severity of impairment, environmental barriers and 
supports, personal characteristics, socioeconomic status, and expectations.

-PRE-K to GRADE 12 EDUCATION With shortages of certified special education 
teachers, inappropriate student-to-teacher ratios, and classrooms with diverse-needs, 
students don't always receive the necessary individualized supports to facilitate their 
learning, development, and transitions.

To register for #PacRim2020 Early Bird Registration, visit www.pacrim.hawaii.edu or contact 
prreg@hawaii.edu, call 808-956-8816, or fax 808-956-4437.

Call for Proposals - CONNECT #PacRim2020 by Genesis Leong is licensed 
under a Creative Commons Attribution 4.0 International License. Based on a work at 
https://rdsjournal.org. Permissions beyond the scope of this license may be available at 
https://www.rds.hawaii.edu.
      
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REVIEW OF DISABILITY STUDIES: AN INTERNATIONAL JOURNAL, Volume 15, Issue 2

Dissertation Abstracts
Compiled by Jonathon Erlen, University of Pittsburgh
Edited by Megan Conway

Surviving and Thriving: An Integrated Critical Theory of Chronic Pain from Stories of Urban American Indians Living with Chronic Pain. Duwe, E. A. G. ProQuest Dissertations & Theses, 2016. [Ph.D. Dissertation] United States: Illinois: University of Illinois at Urbana-Champaign. Publication Number: 10609649

Muslim and Catholic Perspectives on Disability in the Contemporary Context of Turkey: A Proposal for Muslim-Christian Dialogue. Ilgit, A. ProQuest Dissertations & Theses, 2017. [S.T.D. Dissertation] United States: Massachusetts: Boston College. Publication Number: 10284375

Voices at the Intersection: Exploring the Roles of Race and Gender in the Pedagogies of Black Male Special Educators. Fenton, P. E. ProQuest Dissertations & Theses, 2017. [Ph.D. Dissertation] United States: Florida: University of Miami. Publication Number: 10269515


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