If your picture of disabled people lies somewhere between brave, cheerful soldier and grumpy, demanding advocate, you might consider adding another perspective. More than any time in the last 50 years or so, people with disabilities are afraid.
In the heat of politics and the scramble for policy attention, saying your group faces threats to its very existence can seem like calculated rhetoric. But for disabled people, it’s no exaggeration. We are literally afraid for our lives, and our fears are both concrete and specific.
As the 2020 Election enters its final stage, candidates at all levels need to do more than just acknowledge disabled people’s fears. They need to understand them, and address them in ways that offer more than vague reassurance.
The first step is to understand what disabled people mean when we say we are afraid. It’s not really about our disabilities. Though some disabilities are by themselves progressive or life-threatening, plenty of people with more or less stable and manageable disabilities are afraid for their lives due to outside social, legal, and economic factors.
Many of us live secure, prosperous lives, and face relatively little ableist stigma. Yet, most disabled people at one point or another feel afraid of their position in society. This should not be a surprise. Even the most outwardly successful and admired among us often harbour a nagging feeling that we are in the way, a burden, not really wanted. If nothing else, our history reminds us.
Within the memory of people still living today, deliberate public policy in the United States kept disabled people physically away from mainstream society through institutionalization and encouraged the elimination of disabled people from society through forced sterilization.
And among Nazi Germany’s first Holocaust victims were disabled people subjected to the next logical step — state-sanctioned killing. The Nazi Aktion T4 program engaged in bureaucratized, medicalized “mercy killing” of physically and mentally disabled people deemed “life unworthy of life,” and “useless eaters.”
Clearly, disabled people’s existential fears are not solely driven by our own personal demons. And while certain specific threats are well in the past, the many advances in rights and acceptance disabled people have made in recent decades doesn’t mean we don’t face other threats today.
Disabled people are alternately anxious and terrified by Covid-19 from at least two distinct angles. First, because of our underlying medical conditions, we are at higher risk of catching Covid-19 and getting extremely sick or dying from it.
Second, the circumstances many of us are in make it harder for us to avoid Covid-19. There’s not much anyone can do about the first problem, but the second is both more horrifying and more solvable.
As of April, about 27% of infections and deaths from Covid-19 were people in congregate care — nursing homes, group homes, larger institutions, and psychiatric facilities. And in a recent article in The Nation, Sara Luterman cites Centers for Disease Control data indicating that by the end of July, 40% of U.S. Covid-19 deaths were in institutions, all of them nearly by definition disabled. This isn’t solely the result of negligence or bad management. The danger is built into the setting itself.
It’s hard enough to protect yourself from a pandemic if you have your own place with regular home care coming in, but it’s exponentially harder, if not impossible to isolate if you are in a nursing home or other congregate-care facility, regardless of its quality.
Then there is the equally terrifying possibility that if we do get sick, we may be refused medical treatment for Covid-19 because of state or local triage policies. This is one of those rare but significant instances where negative assumptions about the viability or value of life with disabilities can directly threaten our lives. The fact that this may only happen in a “worst-case scenario” is hardly a comfort, since Covid-19 has already proven to be the worst-case scenario.
Finally, disabled people are confronted daily with the fact that the more the pandemic is mishandled overall, and the more people deny it or refuse to take precautions, the more everyday danger we face. A new infectious disease is frightening all by itself, and for everyone. Combined with incompetence, political posturing, and deep medical ableism, Covid-19 turns many of disabled people’s previously theoretical fears into concrete, realistic, and very immediate threats.
The specifics vary a little, but the pattern is horribly familiar. Strangers, neighbours, or even family see someone “acting strangely” or “erratically.” Anxiety about this is usually amplified further if the person is Black, or activates other bigotries, such as homophobia or transphobia. Someone calls the police — “See something, say something,” right? The police arrive with their own preconceptions and fears, and either no knowledge of mental health and other disabilities or just enough garbled “knowledge” to amp up their own anxieties. The person doesn’t answer commands as expected, moves, and another disabled person lies dead for essentially no reason other than a mix of fear and intersecting prejudices.
Since strictly-defined records aren’t consistently kept, it’s hard to say exactly, but studies over the last several years suggest that between a third and a half of people killed by police have some kind of physical, sensory, intellectual, or mental disability. We also know that many, if not most of the Black people killed by police in recent years, and in the past, also had disabilities, strongly suggesting additional links between racism and ableism in police violence.
It is especially tricky to talk about this, but absolutely essential.
For one thing, conventional wisdom has always held that disabled people, presumed to be vulnerable, should turn to police for protection from random crime and cruelty. At the same time, many sub-groups of disabled people have long had the opposite experience of being profiled by police as a danger to the public, or as some kind of public nuisance, and treated accordingly. In particular, people with mental health disabilities, autism, and virtually any disabled person of colour, gay, or transgender disabled person have ample reasons from personal experience to fear the police as sources of either vindictive punishment for “noncompliance,” or just deadly misunderstanding.
People also disagree over the nature of the problem itself. The common understanding of police violence against disabled people breaks down into two main interpretations. In one view, police killing of disabled people is the result of tragic mistakes based on simple ignorance about disability, suggesting a need for more police training, and carefully coaching disabled people to somehow avoid danger.
The other view is that the problem is another facet of much deeper systemic prejudices, some unconscious, some intentional, that are only fixable through fundamental changes in the role and power of the police, and in society’s deeper understanding of race and disability.
This fundamental difference in the understanding of police violence generates conflicting solutions. Easy fixes are attractive, but probably ineffective, or worse. More effective and enduring solutions require much more difficult conversations and broader social changes.
But whatever the cause or cure, the fear is real and realistic — and calls for more than token gestures and glib “awareness” campaigns from all of us, especially our elected officials.
Should people with terminal, excruciatingly painful illnesses have the right to kill themselves, with a doctor’s help? What about people with “severe” disabilities and no options insight for a better life?
The disability community is somewhat divided on this, much like society as a whole. Some see it as an individual choice, a civil rights issue primarily for people deemed “terminally ill,” with no special implications for disabled people. The “right” and “dignity” of suicide for disabled people is even romanticized in popular culture, or at least idealized. The novel and film “Me Before You” are only among the more recent examples.
On the other hand, the most recognized opponents of assisted suicide focus on the idea that it violates a fundamental “right to life” or the inherent “sanctity” of life, and essentially moral, religious take on the issue. This leaves some progressively-minded disabled people with a dilemma. Many of our would-be political allies advocate a deeply disturbing policy change that undermines our personhood, and perhaps our lives. Meanwhile, our rights are often defended by people we don’t necessarily trust, who disagree with us on virtually every other issue we care about.
But there is another movement against assisted suicide that comes from a specific disability perspective that is more practical and focused on its broader social impact. It is an essentially secular, disability-based argument that making suicide legal, especially for people who exist in the grey areas between severe disability, chronic pain, and terminal illness, will lead to a broader devaluation of disabled people’s lives, and provide an implicit “out” for a society that doesn’t want to invest in long term care for people with significant disabilities.
It also often feels like a very short step from a disabled person claiming a “right to die” in a positive sense, and disabled people feeling pressured to die due to the day to day struggles of disability going unaddressed, and a sense of being a “burden” to their families.
This is how even debating assisted suicide contributes to disabled people’s overall sense of fear and danger. Even though it is supposed to be a personal choice, it is too easy to see it morphing into a social obligation, if not a legal mandate.
This is an especially potent fear for people who already feel socially unwanted or trapped in poverty. The “liberalization” of assisted suicide laws may be more of a passive threat than Covid-19 or police violence, but it both depends on and feeds into the deadly devaluation of disabled people’s lives.
Caregiver murder ...
Finally, we must contend with a phenomenon that is both feared and oddly accepted in the popular consciousness: family members murdering the disabled people they care for.
Again, the scenario is familiar.
A parent kills their disabled child, or a non-disabled person kills their disabled spouse. Then they blame a combination of despair and exhaustion from years of difficult caregiving, worry about what will happen when the caregiver dies leaving the disabled person helpless and alone, and a supposed lack of services.
Whatever the details of the specific story and rationale, the public reaction is usually the same. Local and national news covers the death as a terribly sad, but understandable tragedy.
The perpetrator is presumed to have been under unimaginable pressure, which explains, if not excuses their act of murder. Sometimes, the murderer’s sentence is even lessened or muted because it’s understood that their actions were born of love, frustration, and fear.
“The system” is blamed for failing them, and their child’s disability is assumed to be the ultimate cause.
The feelings and motivations are complex, but the message is also clear. Disabled people are a burden, and in some cases, our death is the only answer to the bind our existence creates for others.
For the past several years, the Autistic Self Advocacy Network has held an annual “Disability Day Of Mourning” to highlight, grieve, and protest the killing of disabled people by caregivers.
Disabled people who are aware of this trend can’t help feeling personally horrified and hurt. Even if it doesn’t threaten us directly, the deadly pattern and the way it is so often excused makes us feel unsafe and unwanted, again.
Candidates for office need to at least understand all of these threats and remember that disabled people’s fears are not unfounded.
Policy approaches …
What can be done to alleviate not just these fears, but the real-life situations and beliefs that feed them? Here are some suggestions that this year’s candidates should consider:
• Any policies that improve the overall handling of Covid-19 will lessen the danger to people with disabilities. The sooner the virus is stamped out, the sooner disabled people will feel confident again about reintegrating into their communities.
• We need new policies and strong judicial enforcement to make it clear that it is not acceptable to use disability status to reduce or deny medical treatment, including in public health emergencies like Covid-19.
• The disability angle must be included in any actions taken to address police violence.
• Police training on disability issues may be worth doing for its own sake, but the content must be right and authentic. And “more training” cannot be allowed to take the place of deeper solutions that address the racism, ableism, and the unchecked power of police in American life.
• Candidates of all parties and ideologies need to resist the call for legalization of assisted suicide, even if it is popular with some of their base voters. At the very least, candidates should understand all of the angles on this issue, including disability rights arguments.
• We might consider new sentencing guidelines, and making judicial appointments that make it harder to mitigate the punishment of caregivers who kill.
• It’s essential for all addressing all of these dangers to improve data collection specifically on crimes against disabled people, including disabled people who are marginalized in other ways.
Not every disabled person is afraid every day. But some of us truly are and for good reason. Most of the rest of us live with at least an undercurrent of existential dread. It’s a fear not of our disabilities themselves, but of a society that shows in so many direct and indirect ways that we are not quite as valued and protected as we are constantly told we are.
The good news is that there are specific things that can be done to alleviate those fears and the threats that inspire them. Candidates, please take note.
This is the third article in a series on disability issues that could influence disabled people’s votes in the U.S. General Elections this coming November.