According to the Centers for Disease Control and Prevention (CDC), 61 million adults in the United States live with a disability. That’s roughly 26 percent of adults living in the United States.
And yet, these numbers are likely a great underestimate. As Dr. Kathleen R. Bogart explains, individuals may be reluctant to identify as disabled. She writes: “In a series of studies, my colleagues and I conducted a survey of factors related to disability identity and disability pride. The first study surveyed 1,105 adults online. Of those people, 710, or 64 percent, indicated they had any type of health condition or impairment. Of the 710 people who had health conditions, only 12 percent of people agreed or strongly agreed that they considered themselves to be a person with a disability. Experiencing stigma was the strongest predictor of identifying as disabled.”[i]
The role of disability stigma
Throughout history, disabled people have been stigmatized. Disability has been linked to disease and helplessness, and in some cultures, disability is associated with ancestral curses.
These stigmas commonly turn up in ableist language, also referred to as disablist language. Jamie Hale, CEO of Pathfinders Neuromuscular Alliance explains, “There’s a sense when people use disablist language, that they are seeing ways of being as lesser. It is often not a conscious attempt to harm disabled people, but it acts to construct a world-view in which existing as a disabled person is [negative].”[ii]
As described by the University of Washington Healthy Aging and Physical Disability Rehabilitation Research and Training Center, disability stigma is evidenced in several ways, including the following:
- Social Avoidance – People with disabilities may be left out of social activities, or they may find that friends become more distant after they develop a disability. People may be hesitant to make eye contact or start a conversation with someone who has a visible disability.
- Stereotyping – People with disabilities may be presumed to be helpless, unable to care for themselves, or unable to make their own decisions. People with one disability, such as a speech impairment, may be presumed to have other disabilities they don’t have, such as an intellectual disability.
- Discrimination – People with disabilities may be denied jobs, housing, or other opportunities due to false assumptions or stereotypes about disabilities. This still occurs today, despite disability rights laws such as the Americans with Disabilities Act (ADA).
- Condescension – People with disabilities may be coddled or over-protected due to perceptions of their helplessness.
- Blaming – People may be blamed for their disability, or accused of using their disability to gain unfair benefits.
- Internalization – People with disabilities may themselves adopt negative beliefs about their disability and feel ashamed or embarrassed about it.
- Hate Crimes and Violence – People with disabilities may be targeted in hate crimes. They are more likely to be victims of physical or sexual violence than people without disabilities.[iii]
Disability stigma has led to devastating consequences. For example, in the 1927 case of Buck v. Bell, the U.S. Supreme Court upheld the state of Virginia’s right to forcibly sterilize Carrie Buck, a young victim of sexual assault, who was considered unfit to procreate. The state had deemed her “feebleminded.” The case, which paved the way for 30 other states to enforce such laws, was called a victory for America’s eugenics movement.[1]
Estimates conclude that somewhere between 60,000 to 70,000 Americans were forcibly sterilized during the 20th century.[iv][v] The victims of state-mandated sterilization, like Buck herself, were labeled “mentally deficient.” Other victims were Deaf, blind, had physical impairments, BIPOC, poor people, and “promiscuous” women.”[vi]
Disability and elder abuse
The CDC has identified that nearly two in five older adults, age 65 and older, have a disability.[vii] Studies have shown that nearly one in two older adults with cognitive impairment experiences abuse.[viii] Older adults with physical disabilities are also particularly susceptible to abuse. Research has found that 30 percent of adults with disabilities who used Personal Assistive Services (PAS) (e.g., activities associated with daily well-being, comfort, safety, appearance, and community interaction) reported one or more types of mistreatment—physical abuse, verbal abuse, financial abuse—by their primary provider.[ix][2]
Despite these high rates of abuse perpetrated against older disabled adults, tailored services are lacking to support survivors. According to the American Association on Intellectual and Developmental Disability, “disability-based organizations have historically not planned for the challenges faced by older people with intellectual and/or developmental disabilities and are not prepared to address these unique needs, including providing education and training on mitigating the risk of elder abuse and neglect for a potentially more vulnerable population of older people.”[x] Similarly, domestic violence and sexual assault agencies and aging services networks may not be fully equipped to support the varying needs of older survivors with disabilities.
Addressing barriers and the role of disability pride
Disabled survivors are often not believed when they report abuse because of ageist and ableist assumptions about mental and physical ability. One powerful way to counteract disability stigma is by challenging ableism in yourself, your agency, and your community. Start seeing disability as a social identity. Listen to the disability community and commit to understanding and valuing their experiences, perspectives, and concerns. Checking your ableist assumptions and being aware of the words you use each day is also a necessary step in disrupting ableism. Along with addressing attitudinal barriers like ableism and stigma, it is also critical to understand and address other barriers that prohibit older disabled survivors from accessing healing supports and services. These include:
- Communication barriers (e.g., using small print or creating content that is not accessible to screen readers; videos that don’t include captioning)
- Physical barriers (e.g, insufficient walkway or doorway space; steps)
- Policy barriers (e.g., programs or activities that don’t comply with laws and regulations requiring programs that they be accessible to people with disabilities)
- Programmatic barriers (e.g., lack of accessible equipment or services)
- Social barriers or social determinants of health (e.g., older adults with disabilities are more vulnerable to violence and abuse because of perceived or actual disabilities or vulnerabilities)
- Transportation barriers (e.g., lack of accessible or convenient public transportation)
For additional information, visit the Centers for Disease Control and Prevention: Common Barriers to Participation Experienced by People with Disabilities.
This July, during Disability Pride Month, we at NCALL join others in raising awareness and visibility of individuals with disabilities. We also see Disability Pride Month as an important opportunity to challenge and confront ableism, advocate for improving accessible practices and resources, and promote inclusion.
Find additional resources:
National Disability Rights Network
A note about the graphic that accompanies this blog. The image depicted is the Disability Pride Flag, which was designed by Ann Magill, a disabled creator. She describes the flag’s components and composition:
- The Black Field: Mourning for those who’ve suffered and died from Ableist violence, and also rebellion.
- The Zigzag Band: How disabled people must move around and past barriers, and our creativity in doing so.
- The Five Colors: the variety of Disability, our needs, and experiences (Mental Illness, Neurodiversity, Invisible and Undiagnosed Disabilities, Physical Disability, and Sensory Disabilities). Blue: mental illness disabilities; Yellow: Cognitive and intellectual disabilities; Green: Sensory perception disabilities; Red: Physical disabilities.
- The Parallel Stripes: Solidarity within the Disability Community, despite our differences.
[1] Eugenicists believe that “the human race can be improved by controlling reproduction as a way of “cleansing” the human gene pool of negative or less desirable traits found in “less desirable” people, particularly those with developmental disabilities, mental illness or those who were considered ‘immoral’ or had criminal histories.”[1]
[2] For additional statistics on the prevalence of abuse targeting older adults with disabilities, please see the National Center on Elder Abuse Research Briefs: Abuse of Adults with a Disability (2012) and How at Risk for Abuse Are People with Dementia? (2011).
[i] How Disability Pride Fights Ableism: Reflections on the 30th anniversary of the Americans with Disabilities Act, Kathleen R. Bogart, Psychology Today, August 10, 2020. https://www.psychologytoday.com/us/blog/disability-is-diversity/202008/how-disability-pride-fights-ableism
[ii] The harmful ableist language you unknowingly use, https://www.bbc.com/worklife/article/20210330-the-harmful-ableist-language-you-unknowingly-use
[iii] University of Washington Healthy Aging and Physical Disability Rehabilitation Research and Training Center http://agerrtc.washington.edu/info/factsheets/stigma
[iv] Ibid.
[v] The Supreme Court Ruling That Led to 70,000 Forced Sterilizations, NPR. https://www.npr.org/sections/health-shots/2016/03/07/469478098/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations
[vi] The Supreme Court Ruling That Led To 70,000 Forced Sterilizations, NPR. https://www.npr.org/sections/health-shots/2016/03/07/469478098/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations
[vii] The Centers for Disease Control and Prevention, Disability Impacts, ALL of US, https://www.cdc.gov/ncbddd/disabilityandhealth/documents/disabilities_impacts_all_of_us.pdf
[viii] Mosqueda, L., Burnight, K., Gironda, M. W., Moore, A. A., Robinson, J., & Olsen, B. (2016). The abuse intervention model: A pragmatic approach to intervention for elder mistreatment. Journal of the American Geriatrics Society, 64(9), 1879-1883.
[ix] Oktay, J., & Tompkins, C. (2004). Personal assistance providers’ mistreatment of disabled adults. Health & Social Work, 29(3), 177-188.
[x] https://www.aaidd.org/news-policy/policy/position-statements/aging#.WSJAVRMrKRs
Written by Sara Mayer, M.A., Communications Coordinator, National Clearinghouse on Abuse in Later Life