The Network of Occupational Therapy Practitioners with Disabilities and Supporters (NOTPD) is an independent organization and member of the AOTA-recognized Multicultural, Diversity, & Inclusion Network. The NOTPD advocates for equal access and inclusion of all occupational therapy practitioners, students, and members of the public in AOTA-sponsored events, programs, and services as well as in the occupational therapy profession as a whole. The NOTPD serves as a voice for its members on disability issues and is a resource on disability culture, legislation, and advocacy. The NOTPD's ultimate goal is to make AOTA members and the occupational therapy profession world leaders in respecting and promoting equal access and inclusion of all people.
Chair: Sandy Hanebrink; email@example.com
Nearly 1 in 5 people in the United States have a disability. About 56.7 million people—19% of the population—had a disability in 2010, according to a broad definition of disability, with more than half of them reporting the disability was severe, according to a comprehensive report by the U.S. Census Bureau (2012).
The report, Americans with Disabilities: 2010, presents estimates of disability status and type. According to the report, the total number of people with a disability increased by 2.2 million from 2005 to 2010, but the percentage remained statistically unchanged. Both the number and percentage of those with a severe disability rose, however. Likewise, the number and percentage of those needing assistance also both increased. (U.S. Census Bureau, 2012).
The U.S. Department of Labor (DOL; 2015) reports that in 2015, people with disabilities represent 19.8% of the population versus people without disabilities, at 68.2%. Yet the unemployment rate for people with disabilities is 11.2%, versus 5.6% for people without disabilities. People with disabilities are the most over educated, under-employed and unemployed population in the world.
People with disabilities are an uncategorized health disparities population and are not included in federal requirements and public health disparities data. Current federal law does not consider individuals with disabilities as a “medically underserved population.” It also does not include disabilities under requirements for cultural competence and fails to recognize disabilities under any federal program that addresses health disparities (Centers for Disease Control and Prevention [CDC], 2011).
Overall, people with disabilities have been reported to experience fair or poor health approximately four times more often than their peers without disabilities. In addition, a disproportionate percentage of people with disabilities experience the social determinants of poor health (CDC, 2011).
“The existence of a disability culture is a relatively new and contested idea. Not surprising, perhaps, for a group that has long been described with terms like ‘in-valid,’ ‘impaired,’ ‘limited,’ ‘crippled,’ and so forth. Scholars would be hard-pressed to discover terms of hope, endearment or ability associated with people with disabilities” (Brown, 1994).
Disability culture is the catalyst to the foundation of occupational therapy and what is now the American Occupational Therapy Association. Without disability, the occupational therapy profession would not exist. Critical to becoming culturally competent in practice is to not only view disability in a medical context of conditions we must treat, but also to embrace disability in a social context as another identifier and one of many cultures in itself.
“Similar to today, the United States faced many problems at the beginning of the 20th century, including war, immigration, industrialization, exploitation of workers, poor schools, and inadequate medical care. However, despite the daunting list of problems, the Progressive Era represented a time of great optimism and confidence in the idea that societal problems could be successfully addressed through progressive reforms. The reformers were people with strong views about democracy and social justice, and they held a firm belief in the power of science to influence proposed social, educational, and medical reforms” (Schwartz, 2009, p. 682). Among these reformers were the founders of the occupational therapy profession, including but not limited to Eleanor Clarke Slagle and George E. Barton.
Eleanor Clarke Slagle was a leader in social reform and an advocate for individuals with disabilities working to ensure social justice and engagement in occupations. Slagle stated, “Covering a period of years of interest in the unfair social attitude toward the dependency of mentally and physically handicapped, followed by lectures on Social Economics by Professor Henderson, Chicago University, Jane Adams, Hull House, Julia Lathrop, now of the Children’s Bureau…I took up [in] 1910 special courses in occupations and educational methods…” (Slagle, n.d., p. 1). She helped lay the foundation of the occupational therapy profession to work to ensure inclusion of individuals with disabilities and their full participation in meaningful occupations.
“George Barton came to believe in the healing power of occupation through his own personal experience. In 1901, Barton learned he had tuberculosis. In 1912, he developed gangrene on his left foot while doing an environmental survey, and following surgery he developed hysterical paralysis on the left side of his body” (Schwartz, 2009, p. 684). “Through his own journey of self-healing Barton learned the value of occupation. This experience led him to dedicate the rest of his life to helping others achieve the physical, emotional, and financial recovery that he had achieved” (Schwartz, 2009, p. 685). An architect by trade, he worked to ensure that the environment was accessible and conducive to promoting healing and participation by those with disabilities or illness.
Occupational therapy’s founders included advocates and individuals with disabilities who believed all people had a place in society. They were not only promoters of occupation, they were promoters of disability culture and helped pave the way, in a sense, for the disability rights movement and the growing recognition of disability culture today.
Disability culture cannot be defined by one specific description or language. It is a complex blending of art, performance, expression, and community. Within this culture, the word ‘disabled’ has been re-purposed to represent a social identity of empowerment and awareness. Like many civil rights movements in the past, disability culture challenges the norms of society, and seeks to counter oppressive entities such as medicalization and institutionalization. Its core values as a culture are reflected in art, conversation, goals, or behaviors. These core values often include: "an acceptance of human differences…; an acceptance of human vulnerability and interdependence…; a tolerance for lack of resolution, for dealing with the unpredictable…; and disability humor—the ability to laugh at the oppressor and our own situations, …however dire" (Gill, 1995, p. 165). Disability culture is unique in that it crosses all economic, age, gender, religious, race, and ethnic barriers. It encompasses many disabilities. No one is considered exempt from becoming disabled.
Disability culture also encompasses the disability rights movement. Like other civil rights movements, it took advocates from within and outside the culture to unite and advocate for societal change. As a result, key legislation was enacted to support the rights of individuals with disabilities. Today, the Rehabilitation Act of 1973, Fair Housing Act, Individuals with Disabilities Education Act, Ticket to Work & Workforce Investment Act, Air Carrier Act, Architectural Barrier Act, and Americans with Disabilities Act (ADA) play an integral role in creating opportunities and ensuring access and inclusion for individuals with disabilities in the U.S. and through the United Nations Convention on the Rights of People with Disabilities globally.
In 2015, we celebrate the 25th anniversary of the ADA. The U.S. has come a long way, but still has so far to go before realizing the full intent of this legislation. The occupational therapy profession, much like other professions, continues to struggle with implementing this legislation. This is ironic as our profession began because of social injustice and the experience of one of the founders, who through therapeutic intervention, regained participation in occupation and became respected as a leader and contributing member of society.
Most health professionals are confident that their hospitals, institutions, and equipment are accessible. However, there is growing evidence that individuals with disabilities may receive inequitable care due to lack of accessible facilities, equipment, information and accommodations (McGuinness, 2013). The same holds true for students and professionals with disabilities, in that they do not always have the same success or opportunities, and struggle to achieve career goals due to attitudinal and physical barriers.
To achieve competence in disability culture, individuals can explore a number of resources including, but not limited to, the culture itself, legislation, disability rights, resources on different disabilities, the arts, and publications specific to occupational therapy and disability. Engaging in disability culture, advocating, and ensuring that everyone can Live Life to Its Fullest, including students, occupational therapy professionals, clients, and all individuals in our communities, is every occupational therapy practitioner’s responsibility. It is what we are and what we do as a profession.
The following resources will help you begin your journey in understanding disability culture. The NOTPD continues to build this Toolkit and are available to assist you. Please share your resources with us. We welcome you to join our network: http://www.notpd.org/join-notpd/
Brown, S. E. (1994). Investigating a culture of disability: Final report. Retrieved from http://dsq-sds.org/article/view/343/433
Centers for Disease Control and Prevention. (2011, January 14). CDC health disparities and inequalities report—United States, 2011. Morbidity and Mortality Weekly Report (Suppl.), 60. Retrieved from http://www.cdc.gov/mmwr/pdf/other/su6001.pdf
Gill, C. (1995). A psychological view of disability culture. Disability Studies Quarterly, 15(4), 16–19.
McGuiness, K. (2013, March 1). ADA-ready. Retrieved from http://www.hfmmagazine.com/display/HFM-news-article.dhtml?dcrPath=/templatedata/HF_Common/NewsArticle/data/HFM/Magazine/2013/Mar/0313HFM_FEA_CompOps
Schwartz, K. B. (2009). Reclaiming our heritage: Connecting the founding vision to the Centennial Vision [Eleanor Clarke Slagle lecture]. American Journal of Occupational Therapy, 63, 681–690.
Slagle, E. C. (n.d.). Experience of Eleanor Clarke Slagle. Bethesda, MD: Wilma West Library Archives.
U.S. Census Bureau. (2012). Americans with disabilities 2010. Retrieved from http://www.census.gov/prod/2012pubs/p70-131.pdf
U.S. Department of Labor. (2015). Current disability employment statistics, March 2015. Retrieved from http://www.dol.gov/odep/
ADA Anniversary Toolkit
ADA Technical Assistance & Other Resources
Disability Culture in NYC (arts)
Disability and Health (CDC)
Disability & Health Data System
Disability History Museum
Disability World (A web-zine of international disability news and views)
Films Involving Disabilities
Disability Social History Project
Health and Health Care Disparities Among People with Disabilities
Independent Living Institute
National Centers for Health Statistics, Classifications of Diseases and Functioning & Disability
NCOA Tip Sheet: Engaging People with Disabilities in Evidence-Based Programs
Rehabilitation Research and Training Centers on Aging with a Disability Healthy Aging RRTC
Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD)
Vaccine Protocols for Health Professionals http://www.cdc.gov/flu/professionals/acip/2013-summary-recommendations.htm and http://www.hopkinsmedicine.org/mandatory_flu_vaccination/faq.html#Exceptions
Disability History: An Important Part of America’s Heritages
Employment and TBI
VA database on PSTD Use the search term “employment”
Assistive Technology Industry Association including Friends of ATIA Newsletter and Quality Indicators for Assistive Technology Listserv
Resources for Deaf or Hard of Hearing
Resources for Improving Health Care to Deaf and Hard of Hearing People is a project of the Centers for Medicare & Medicaid Services (CMS), Gallaudet University, and the Delmarva Foundation for Medical Care. This project provides resources for community members, professionals, and students. The Standards of Care for the Delivery of Mental Health Services to Deaf and Hard of Hearing Persons may be of particular interest.
The Gallaudet Research Institute (GRI) researchers gather and analyze data concerning the demographic and academic characteristics of deaf and hard of hearing populations, primarily to provide information needed by educators in the field.
Substance and Alcohol Intervention Services for the Deaf (SAISD), Rochester Institute of Technology, provides substance abuse recovery resources for consumers, their families and friends, and providers. SAISD offers a National Directory of Alcohol and Other Drugs Prevention and Treatment Programs Accessible to the Deaf.
National Association of the Deaf (NAD) is a membership organization with a mission "to promote, protect, and preserve the rights and quality of life of deaf and hard of hearing individuals in the United States of America." NAD has a position statement, Mental Health Services For People who are Deaf and Hard of Hearing, that may be of particular interest to Occupational therapy practitioners.
Hanebrink, S. (2000, August 28). ADA consulting opportunities. OT Practice, 5(17), 12–15.
Hissong, A. N. (2008, July 28). Occupational therapy’s role with farmers with disabilities or disease. OT Practice, 13(13), CE-1–CE-8.
Loukas, K. M. (2005, March 21). Sports as occupation: A sports camp experience for children who are blind or have visual impairment. OT Practice, 10(5), 15–19.
Cooper, R. A. (1997). Awareness of disability culture in research. Technology and Disability, 7(3), 211–218.
Duncombe, L. W. (1997). Cultural considerations in the development of children with disabilities: implications for future work potential. Work: A Journal of Prevention, Assessment, and Rehabilitation, 9(1), 65–70.
du Toit, S. (2008). Using the Model of Human Occupation to conceptualize an occupational therapy program for blind persons in South Africa. Occupational Therapy in Health Care, 22(2–3), 51–61.
Francisco, I. (2002). Occupational therapy and people with intellectual disability from culturally diverse backgrounds. Australian Occupational Therapy Journal, 49, 200–211.
Kirshbaum, M. (2000). A disability culture perspective on early intervention with parents with physical or cognitive disabilities and their infants. Infants and Young Children, 13(2), 9–20.
Levasseur, M., & Desrosiers, J. (2007). Comparing the Disability Creation Process and International Classification of Functioning, Disability and Health models. Canadian Journal of Occupational Therapy, 74, 233–242.
Pogrund, R. L. (2002). Early focus: Working with young children who are blind or visually impaired and their families. New York: AFB Press.
Smith, D. L., & Hilton, C. L. (2008). An occupational justice perspective of domestic violence against women with disabilities. Journal of Occupational Science, 15(3), 166–172.
Susman, J. (1994). Disability, stigma and deviance. Social Science & Medicine, 38(1), 15–22.
Stucki, G., Cieza, A., & Melvin, J. (2007). The International Classification of Functioning, Disability and Health (ICF): A unifying model for the conceptual description of the rehabilitation strategy. Journal of Rehabilitation Medicine, 39, 279–285.
World Health Organization. (2008). The right to health: Fact sheet 31. Retrieved from http://www.ohchr.org/Documents/Publications/Factsheet31.pdf