What’s Love Got to Do With It? An Argument Against Institutionalizing People with Severe Physical Disabilities

Abstract:

This article, based on the author’s experience, takes a critical look at the basis for the bias toward nursing home placement for people with severe physical disabilities. The author writes that the roots of such institutional bias lie in anti-Black racism and ableism. She lists parallels in the federal responses to Hurricane Katrina and the COVID-19 pandemic as examples of a “politics of disposability” for vulnerable and invisible communities. She longs to end her fear of being placed in a nursing home, and places hope in the work of disabled activists and allies committed to the community presence and participation of disabled people.

Key Words:

disability, disability justice, Medicaid, home- and community-based services, community-based care, nursing homes

The social worker at the rehabilitation hospital entered my room looking grave. We had become friends, so I thought perhaps there was something in his personal life that was troubling him. He sat on the ledge next to a window. There was a bird feeder on the other side of that window. I could watch birds when I wasn’t in therapy. Jim started talking, telling me there were concerns about my safety. My Multiple Sclerosis (MS) symptoms, mainly muscle spasms and tremors, weren’t getting better and I had experienced some falls in the bathroom while in rehab. He reminded me of the verbal commitment I’d made a week or so earlier to make my personal safety a priority. He paused, took a deep breath, and recommended that I transfer from the rehab hospital to a nursing home. I would be safe there, he said.

I lived in a fog over the following weeks. I couldn’t attend to the shock and grief of those around me as a plane flew into twin towers in New York. I couldn’t watch the news reports and would spend the next year uncovering what happened on that September day. The world as we knew it could have been ending. My fog vanished a few weeks later as the EMTs pushed me on a gurney into a nursing home. I was immediately greeted by the smells of unwashed humanity and the screaming of a ventilator alarm. I knew right then that I was not in a safe place.

Why Community-Based Care Is Important, or When Keepin’ It Real Goes Horribly Wrong

It is probably no surprise to Generations journal readers that there’s a bias toward placing severely disabled people in nursing homes (O’Brien and Elias, 2004) when community-based care is, most often, preferred, less expensive, and of better quality. I have much more agency when managing the women who come into my home than I do when interacting with nursing home staff. The above conversation I had with the social worker was only one of many similar conversations.

I have been in and out of nursing home care for twenty years, and lost count of how many nursing homes I’ve lived in. All of the placements were “voluntary,” meaning I agreed with the recommendations for nursing home placements because I had inadequate help at home or, as was the case in my first decade of placements, I didn’t know programs existed that could help me stay in my home. Each time, the person recommending the placement assured me that being in a nursing home would solve whatever insurmountable problem I was facing. It would be a place of safety. It would be a place where I would not be isolated. It would be a place where I could get rehab at a slow pace.

Each time, the facilities fell short of the promises. Not just one facility, but at least 20 facilities in different parts of the country. None of them felt safe. All of them were isolating. The pacing for rehab in nursing homes is slow. There seems to be little incentive for getting people back into their homes and communities.

Olmstead Launches the Trend Toward Community-Based Care

Much of the conversation around deinstitutionalization has concerned people with mental illnesses. While there exists a bias toward institutionalizing people with severe physical disabilities, I believe this institutionalization bias is even stronger toward people with mental illnesses. The push toward community-based care got a boost from two institutionalized women with mental illnesses, culminating with the Supreme Court’s Olmstead decision, which mandated community based care, when appropriate, for people with disabilities.

On June 22, 1999, Supreme Court Justice Ruth Bader Ginsburg read the decision on this case. The case came to the court when two Georgia women remained institutionalized years after their doctor deemed them medically stable and ready for discharge (Ginsburg et al., 1999). They both lacked community-based care services, which had contributed to several institutional stays. The women were told that they had to wait until funds were available for them to get the community services they needed.

The court decided that people with disabilities should live in the setting most appropriate to the individual’s needs. Under Olmstead, community-based care is the default, with three stipulations. First, professionals must support the disabled person’s desire for community services. Second, the individual must not object to community-based services. And finally, community-based services must be a reasonable accommodation when compared to others in a similar situation.

Many view Olmstead as an outgrowth of the Independent Living Movement, begun in the 1970s. It is important to note that the tenets of independent living and the tenets of Olmstead are at odds over self-efficacy. While independent living advocates for the consumer to decide the appropriate setting, the consumer is only a partial decision maker in Olmstead. Medical care providers can hold sway over whether or not an individual lives in the community, underlining the assumption that people with disabilities cannot make good decisions for themselves.

For this article, I’d like to focus on people with chronic physical illnesses. Those of us with chronic illnesses have a particular, if not tenuous, connection to the disability community and to issues of disability justice, an intersectional way of looking at justice for disabled people that acknowledges all the factors—gender and gender representation, race, class, etc.—that contribute to our oppression.

Our reliance upon medical care can make us vulnerable to institutionalization as well as vulnerable to isolation from other disabled people. When in 1991 I was diagnosed with MS, doctors routinely discouraged MS patients from interacting with other sick and disabled people, often saying the interactions would be unfruitful and depressing. Had I listened to this advice, I would have missed out on forming a community with a wide range of sick and disabled people. And I would have missed out on vital information that allowed me, time and time again, to return home from institutional care.

I am also using analyses that focuses on anti-black racism. Why? As attorney and disability activist Rebecca Cokley says, anti-black racism and ableism are “roots of the same tree” (Kendi, 2021). Many of us who are sick and disabled can’t separate race and disability into two neat packages. I am never “just” disabled and never “just” Black. And my interactions in medical spaces or in nursing homes are never focused on one identity over the other.

The Current Situation or What Had Happened Was …

According to the Centers for Disease Control, there are 1.4 million Americans living in nursing homes. Out of that number, 14 percent are Black and 5 percent are Latinx (Harris-Kojetin et al., 2019). Those numbers became even more significant when the COVID-19 pandemic hit, and scores of people who lived in nursing homes died, some in secret, as nursing homes were closed to outside visitors and some legislators sought to minimize the nursing home death count (Sexton, 2021).

It wasn’t until May 2020 that nursing homes were forced to submit the number of COVID-19 infections and deaths at their facilities (Bunis, 2020). Reporters from The New York Times knew they would be hindered if they relied solely upon government-endorsed numbers, so they started tracking their own numbers (The New York Times, 2020). They saw that facilities with higher concentrations of Black and Brown residents also had higher concentrations of COVID-19 infections and deaths (Gebeloff et al., 2020).

I watched the death count rise and numbers unfold as if I were in the middle of a nightmare, aware of the horror, while simultaneously aware of my dream state.

I discharged myself from a facility only months before the lockdown. I had no way of knowing a pandemic and lockdown were coming, but I was quite aware of the nursing home conditions that led to the massive death count. Employees weren’t paid well and were forced to work shifts at other facilities. I remember having conversations with one worker who would come to my room, open my bathroom door and sit shielded behind the door. There her supervisor wouldn’t see her sitting and resting her aching arthritic knees. She wanted to retire, but couldn’t afford it.

Another worker came to work every day with a bright smile and brightly polished nails. It wasn’t until much later that she confided she was homeless and living in a shelter. She continued her work and I would get periodic updates from her. I celebrated with her as she saved enough money to buy a used car. No longer would she have to take the bus and Uber to get to work. She could start saving toward an apartment.

Employees also had inadequate benefits and sometimes opted to come to work sick. I witnessed a stomach virus sweep through a facility in Ohio just days after a worker came to work ill and interacted with residents. Many people don’t know that there are some infections that occur almost exclusively in congregate settings (Montoya and Mody, 2011).

Parallels in COVID-19 and Hurricane Katrina Federal Responses

In trying to figure out how we got to this point, it is important to look at the ways in which the United States has treated vulnerable communities. This examination will provide clues to societal values and political focus. When looking at issues around the U.S. response to the COVID-19 pandemic, parallels are often made between the current pandemic and the flu pandemic of 1918. And there are certainly documented parallels in how newly formed urban Black communities, created as Blacks traveled north to escape southern racism and joblessness, were unjustly scapegoated for the spread of that flu (Gamble, 2010), as Asian Americans have been unjustly scapegoated for the spread of COVID-19. But, I don’t believe we have to look back that far for clues.

There are startling parallels between the Hurricane Katrina response and the COVID-19 pandemic response. The parallels between President Bush’s response to Katrina and President Trump’s response to COVID-19 are so eerily close, in some cases, it might lead one to believe that the former presidents consulted with one another. While this is highly unlikely, below I list parallels:

• Both administrations hired inexperienced people who were ill-equipped to respond to disasters or pandemics.
• Both administrations defunded or disbanded agencies designed to address disasters or pandemics.
• Both administrations had advance notice of the disaster/pandemic, but failed to respond.
• Both administrations engaged in “PR tactics” to minimize disaster/pandemic and demonize/minimize its victims.
• Both administrations engaged in cronyism, allowing the well-connected to profit from disaster/pandemic.
• Large numbers of people of color, elders, and people with disabilities died as a result of an insufficient response to disaster/pandemic.

It is important to look at these parallels to decipher clues to the underlying theoretical framework. And while neither the Bush nor the Trump administrations created ableism or an institutional bias, they were informed by frameworks already in place and operated out of those frameworks. This is the reason why, I believe, both administrations were so startlingly similar in their disaster responses. They were operating out of the same framework.

Cultural critic and university professor Henri Giroux writes of a politics of disposability that renders some groups as disposable and in a constant state of emergency while living in spaces of invisibility. According to his book, Stormy Weather: Katrina and the Politics of Disposability (Giroux, 2016), if the group lives in a state of chaos and is invisible, it is easy to create a narrative for that group that justifies their conditions.

While COVID-19 infection rates and deaths soared among people of color and nursing home residents, they were overtly and covertly blamed for this by reports that included information on underlying conditions or age (Centers for Disease Control and Prevention, 2021). The subtext was that you were safe if you took care of yourself and weren’t too old. If you didn’t take care of yourself or were old, well, what else could you expect?

With Katrina, a lax, then militaristic response was justified because those remaining in New Orleans were painted to be drug addicts who remained behind intentionally for easy access to drugs.

While Giroux was specifically writing about the politics of disposability and referring to people who are poor and black, the analysis holds for people who are disabled. One only has to pay casual attention to social media for barometer readings of the constant state of emergency within the disability community:

Sound the alarm. There's a pandemic that threatens resources and people with disabilities might not have the same access to care as non-disabled people.

Sound the alarm. It becomes increasingly difficult throughout the pandemic for some people with disabilities to maintain care at home. Disabled people post online that they are unable to get out of bed because they either don’t have a caregiver or some piece of equipment needs repair.

Sound the alarm. Someone is having a health crisis and can’t get their medications because it’s being incorrectly touted as a COVID-19 cure.

Sound the alarm. There is a massive and prolonged power outage in Texas, threatening the lives of many. Home care and social service agencies rush to assist clients without power. Hashtag activists rush to raise money to help. As with all the crises, some were saved. And some were not.

It is easy to be active on social media and be well-informed of current events and still have no inkling of the daily struggles of invisible communities. Some journalists may have the consciousness to interview people with a range of genders and ethnicities, but overlook talking to disabled people. The narrative created as a result of this invisibility is that there's nothing to be upset about when scores of disabled people die. Most of them were going to die or even wanted to die anyway.

The Risks Inherent in Disabled Spaces and Safety Concerns

The politics of disposability is only one facet of the framework designed to contain and erase disabled people. Another facet concerns disabled space and the nature of the congregate spaces inhabited by disabled people. Inspired by the work of Ibram X. Kendi, space racism, he writes in How to Be an Antiracist, (Kendi, 2020) is the assumption that Black spaces are inferior to White spaces.

Our former president gave an audiovisual example of this type of thinking when he referred to African countries as “shithole countries” (Dawsey, 2018). This space racist statement was meant to conjure images of uncivilized Black people wandering around scantily clad and living in abject poverty. It undergirds the thinking that slavery in the United States wasn’t that bad and ultimately saved Black Americans from savagery. When the coded language is applied to Black spaces in the United States, words like “urban” and “inner city” are used. These spaces are dangerous, haunted by young Black super predators and poor, dangerous public schools. There is no thought given to the systemic and intentional policies that created the truth beneath the exaggerations in Black spaces. And no mention is made of Black spaces that create safe havens for Blacks from white racism.

But what happens when Blackness intersects with disability? How does the concept of space racism apply? As with most racist ideas, contradictions abound. The reason Black spaces are inferior is because they don’t include whiteness and deter the (presumed) goal of Black assimilation into whiteness. The presence of disabled bodies in Black spaces further hinders this assimilation. The assimilationist goal is an able-bodied goal. It is not the goal of having Black crips [slang for cripple, a term being reclaimed by disabled people] become more like white crips, though that could be the goal in some multiracial disability spaces.

Then there’s the assumption of disability incompetence within able-bodied spaces. When I hear a push for me to volunteer myself for institutionalization, as I did in that first conversation at the article’s start, I always hear discussions around safety. It is assumed that because my symptoms are unpredictable they will one day sneak up on me and I will be unable to care for myself. Or if my symptoms are not controlled, I will fall or make some poor choice and injury will somehow sneak up on me.

There is not, in these discussions, any thought given to accommodation or how I might safely remain at home, how I might increase aide hours to accommodate my needs, or even something as simple as how I could use a keyless entry to make sure aides or emergency staff can enter my home when I am unable to answer the door. No. All because the ableist and white supremacist vision of how my riding amuck in the streets with a power chair keeps able-bodied Blacks from their (supposed) desired goal of whiteness. And all because our society’s obsessions around safety reside adjacent to space racism.

In her book, All About Love: New Visions, bell hooks (hooks, 2018) writes of this safety obsession: “The growing number of gated communities in our nation is but one example of the obsession with safety. With guards at the gate, individuals still have bars and elaborate internal security systems. Americans spend more than thirty billion dollars a year on security. When I have stayed with friends in these communities and inquired as to whether all the security is in response to an actual danger I am told ‘not really,’ that it is the fear of threat rather than a real threat that is the catalyst for an obsession with safety that borders on madness” (hooks, 2018).

The audiovisual example of this obsession shows up in videos of Mark and Patricia McCloskey, a St. Louis couple who stood on their front lawn brandishing guns while peaceful racial justice protestors walked by their house. The protestors were headed to the mayor’s house who lived in the couple’s neighborhood. According to videos, a few (white) protestors tried talking with the couple, but the crowd mostly ignored the armed couple and there was no evidence that anyone threatened them.

Yet, in subsequent interviews, the McCloskeys spoke of danger and their fear of being killed. The former president touched on this combination of space racism and safety obsession, as his campaign tried to win the hearts of suburban white women. He repeatedly spoke of keeping affordable housing (and therefore, danger) out of the suburbs. Using logic informed by space racism and safety obsession, if able-bodied and White only keeps one marginally safe, disabled and Black must be shielded.

And what of the disabled spaces? The shielding that nursing homes provide comes at a heavy cost. Life in a nursing home calls for the surrender of adulthood. All of whatever income one has goes to the nursing home. The resident is given a $40 per month allowance for toiletries. What if I use my allowance to go to a movie with a friend? That friend has to come inside the facility, sign me out, leave their phone number and vow to have me back within two hours. The reason for this two-hour rule, I’ve been told, is because the nursing home is responsible for me. This reasoning always baffles me.

Parents are responsible for their adolescent children and somehow maintain that responsibility when the adolescent is left to their own devices for more than two hours. Ain’t I at least an adolescent? The truth of the rule could be Medicaid regulations, which reason that if someone is capable of being on their own for more than two hours, they don’t need nursing home care. Perhaps Medicaid regulations are correct in this one instance. There are better options to nursing home care for those of us who choose to be at home.

Vision for the Future, or A Love Supreme

In the midst of the pandemic and while scores of disabled folks were dying in nursing homes (Centers for Medicare & Medicaid Services, 2021), there were calls for nursing home reform. Reforming what exists presumes systemic benevolence and that nursing homes are a nicely paved super highways that only need some potholes covered. I hope I’ve shown that the links between ableism and racism are deadly. It’s not just a pothole or two. The entire highway system is flawed and needs to be demolished and rebuilt.

Working for this bit of justice isn’t just something nice to do for crips. I believe it is a source of salvation for our democracy. Hannah Arendt writes, “Terror becomes total when it is independent of all opposition” (Arendt, 1985). Knowing that I could disappear in the dark of night is a form of terror. I inhabit this terror, knowing I am always one ER visit away from disappearing. Our democracy rests with your discomfort over that fact. You have the privilege of engaging with your discomfort or you may turn away.

What’s love got to do with any of this? I would like to think that the push toward community-based care is grounded in love. Not that smarmy, super sweet, marshmallow-fluff stuff that makes people utter “aawww,” when they see me, as if they’re watching YouTube puppy and kitten videos.

Not the kind of questionable, theology-based love that inspires people to offer prayers for me while I shop for fresh produce.

Rather, it is a kind of love that fuels the righteous indignation that activists are so concerned about my presence and my participation in community that they are willing to create easily accessible structures needed for me to remain a vital part of community. This viscous love will not allow anyone to sit comfortably while the invisible and vulnerable die. To me, this is not a naive wish for tolerance or a craving for acceptance.

My yearning for this “love justice,” as poet Grace Paley (Bowen, Paley, Saunders, 2017) called it, acknowledges the fact that cynicism can grow from a heart broken. And my heart is broken almost daily by constant and relentless reminders of how disposable I am. Yet my revolutionary response for a broken heart is to not allow cynicism and lowered expectations to flourish. I carry my broken heart in my hands and nurse it. I will be free. I will be happy. I will be in community with you. Please join and be in community with me.

Elaine Shelly, MS, is a freelance journalist and filmmaker. She is working on a documentary examining healthcare access and Black women in the United States.

References

Arendt, H. 1985. The Origins of Totalitarianism. New York: Harcourt Brace.

Bowen, K., Paley, N., and Saunders, G., eds. 2017. A Grace Paley Reader: Stories, Essays, and Poetry. New York: Farrar, Straus and Giroux.

Bunis, D. 2020. “Nursing Homes Ordered to Disclose COVID-19 Cases, Deaths.” AARP. Retrieved July 22, 2021.

Centers for Disease Control and Prevention. 2021, May 13. “Underlying Medical Conditions for Clinicians.” Centers for Disease Control and Prevention. Retrieved July 22, 2021.

Centers for Medicare & Medicaid Services. 2021. “COVID-19 Nursing Home Data.” Retrieved July 22, 2021.

Dawsey, J. 2018. “Trump Derides Protections for Immigrants from 'Shithole' Countries.” The Washington Post, January 12. Retrieved July 22, 2021.

Gamble, V. N. 2010. "There Wasn't a Lot of Comforts in Those Days: African Americans, Public Health, and the 1918 Influenza Epidemic.” Public Health Reports 125(Suppl 3): 114–22.

Gebeloff, R., et al. 2020, May 21. “The Striking Racial Divide in How Covid-19 Has Hit Nursing Homes.” The New York Times, May 21. Retrieved July 22, 2021.

Ginsburg, R. B., et al. 1999. OLMSTEAD V. L. C. Legal Information Institute. Retrieved July 22, 2021.

Giroux, H. A. 2016. Stormy Weather: Katrina and the Politics of Disposability. Abingdon: Routledge.

Harris-Kojetin, L., et al. 2019. Long-Term Care Providers and Service Users in the United States, 2015–2016. Retrieved July 22, 2021.

hooks, b. 2018. All About Love: New Visions. New York: William Morrow, an imprint of HarperCollins Publishers.

Kendi, I. X. 2020. How to Be an Antiracist. New York: Random House Large Print.

Kendi, I. X. 2021. “Be Antiracist with Ibram X. Kendi.” Audio Podcast, June 8. Retrieved July 22, 2021.

Montoya, A., and Mody, L. 2011. “Common Infections in Nursing Homes: A Review of Current Issues and Challenges.” Aging Health 7(6): 889–99.

O’Brien, E., and Elias, R. 2004. “Medicaid and Long-Term Care.” Retrieved July 22, 2021.

Sexton, J. 2021. “Cuomo Still Underreporting the Total Count of COVID Nursing Home Deaths,” February 12. ProPublica. Retrieved July 22, 2021.

The New York Times. (2020, June 27). “Nearly One-Third of U.S. Coronavirus Deaths Are Linked to Nursing Homes.” The New York Times. Retrieved July 22, 2021.