Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

I am sitting next to Sylvia (a pseudonym), an 81-year-old Jewish woman with dementia, in the Alzheimer’s Special Care Unit of Cedarwood Care Center, a skilled nursing home in the Chicago area. It is February of 2019 and I have been conducting ethnographic research at Cedarwood for nine months. During that time, I have built a strong relationship with Sylvia, who, has a long-term psychiatric disability in addition to dementia. Although her aphasia (a condition affecting speech and language understanding) is significant, Sylvia loves to talk and laugh. She also enjoys singing, and her favorite song is “My Bonnie.” She appreciates physical affection, such as holding hands, hugging, or kissing on the cheek. Sylvia is always complimentary to those around her, often telling others that they are wonderful or beautiful. As we sit together in one of the common areas, Sylvia and I talk and hold hands. Suddenly, a social worker rushes into the room and announces she is here to assess the progression of Sylvia’s dementia. She then says, “I’m going to say three words and I want you to repeat them. Bed, sun, horse.” Sylvia is silent.

The social worker stands and declares loudly that Sylvia “just kind of stares at you” and is “pretty far gone.” She then leaves the room, scribbling the apparently poor outcome of Sylvia’s evaluation in her notebook. I then write down, in my own field notes, how much the social worker’s assessment missed or overlooked about Sylvia and who she was as a person. 

Ageism and Ableism

The social worker’s limited view of Sylvia and her focus on decline rather than capacity is reflective of ageism and ableism—interconnected systems of oppression that dehumanize the lives of old people with disabilities. As noted in Lewis (2020) and my own work, these systems of oppression define the “normal” or “ideal” body and mind as non-disabled, youthful, and capable of meeting social norms and standards in terms of intelligence, productivity, communication, and behavior.

Institutionalization

One of the most insidious manifestations of ableism and ageism is institutionalization. Many old people with disabilities fear nursing homes and other forms of institutional care. A recent poll from the Nationwide Retirement Institute revealed that more than 50% of adults age 50 and older fear living in a nursing home and view it as a fate worse than death (Mercado, 2019). These fears are not unfounded. Although only approximately 5% of people aged 65 and older are in nursing homes at any given time (Family Caregiver Alliance, 2015), an estimated 58% of adults will receive nursing home care after age 50 (Hurd et al, 2014).

Institutional, Cultural, and Social Levels

Ageism and ableism are often not examined together, but examining institutionalization through a critical lens illustrates how ageism and ableism affect people with disabilities at institutional, social, and cultural levels. Residents are often denied autonomy, freedom, and self-determination and are subjected to various forms of harm, including neglect, abuse, financial destitution, forced dependence, and exclusion from their communities and society. Like Sylvia, they are not valued for their capacities, roles, and relationships. Instead, they are labeled, dismissed, rendered invisible, and dehumanized. 

Critical analysis also uncovers how social, cultural, economic, and political forms of ageism and ableism lead to institutionalization. Nursing home care is the only option for many elders, particularly for people in what Twigg (2004) refers to as “deep old age.” The Family Caregiver Alliance (2015) estimates that as many as one in eight people over the age of 85 reside in nursing homes. As old people increasingly acquire disabilities, they often need more assistance than informal caregivers can provide. Although activism and advocacy have resulted in the majority of Medicaid funding being spent on home and community-based care, 47% of funds are still allocated to nursing homes and other institutional settings. Consequently, old people with disabilities are “still disproportionately served in nursing facility settings” (Accius & Flinn, 2017). Rather than fully fund home and community-based services, the federal government and states have elected to fund these services only partially, resulting in limited waivers and long wait lists. Conversely, there is often no wait list for a nursing home, which creates an institutional bias.

There is little recognition that being placed in a nursing home results in isolation, destitution, and possibly neglect and abuse. 

Culturally, institutionalization is viewed as appropriate and essential for some old people with disabilities. There is little recognition that being placed in a nursing home results in isolation, destitution, and possibly neglect and abuse. There is also little awareness that increased funding for home and community-based services and greater support for care workers and caregivers could limit or even eradicate the necessity of nursing homes. Even as the COVID-19 pandemic ravaged nursing homes through the United States, resulting in disease and death for residents and care workers, there was limited outcry and no mass movement to end institutionalization. Disability and elder rights advocacy groups did increase their efforts to end institutionalization during the pandemic, but little support from government, the public, or media ensued.

These social, cultural, economic, and political factors reveal how ageism and ableism work together to maintain the existence and acceptance of institutionalization, despite the significant number of people who express a strong desire to “age in place” in their homes and communities.

Other Systems of Oppression

As noted by Lewis (2020) and in my dissertation work, ageism and ableism are grounded in white supremacy, colonialism, heteropatriarchy, and capitalism. Old people with disabilities who are further marginalized by race, gender, and class and are at an increased risk of institutionalization.

Although nursing home residents are still predominately white, people of color are increasingly likely to be confined to nursing homes while their white counterparts, with greater financial resources, opt for assisted living and community care (Feng et al., 2014). People of color are also more likely to be in for-profit nursing homes, with lower quality of care and a higher risk of disease and death (Miles & Yoshizaki-Gibbons, 2020).

Women are more likely to be institutionalized than men, given their longer lifespans and lack of social and structural support. According to the Family Caregiver Alliance (2015), up to 75% of nursing home residents identify as women.

Those aging with disabilities are more likely to experience long-term poverty, denial of resources, and environmental and social barriers. Disabled elder* Corbett O’Toole terms this “the poverty to nursing home pipeline” (Yoshizaki-Gibbons, 2021).

O’Toole explained: “As I've aged, I've become more visibly disabled, so I am dealing with more ableism, more often, and also, my fears of institutionalization are becoming much more real, cause now I am in more categories of risk for institutionalization. When I could walk, I felt like I was safer…I was less likely to be seen as somebody who should be in a nursing home. Now that I'm not walking anymore and I use a powerchair, I feel like … the number of ways [the nursing home industry] can get me [is increasing], and then the poverty just makes it all worse.”

Thus, nursing homes and other forms of institutionalization illustrate how ageism and ableism intertwine with other forms of systemic oppression. This leads to increased vulnerability for old people with disabilities who are marginalized by race, gender, and class.

Moving Forward

The COVID-19 pandemic raised questions for many people about the necessity of nursing homes, and disability and elder rights movements continue to fight for the closing of institutions in all forms, but more work remains to be done. Increased understanding of ageism and ableism and efforts to eradicate these interlocking systems of oppression will support these movements.

Sadly, Sylvia died a few months after the COVID-19 pandemic began. Her memory has solidified my belief that we can imagine and create a society in which people with disabilities are not subject to the same fate in old age. We deserve communities in which people with disabilities can not only survive, but thrive.

*Note: Impact generally uses person-first language, but O’Toole uses the term disabled elder.