Fear
One of the least understood aspects of life with disabilities and the texture of the disability community is fear.
Non-disabled people, who lack direct experience of life with disabilities, often assume that disabled people are, and should be, fearful — in the sense of being timid, risk averse, or weak — as a natural consequence of their disabilities. But when disabled people actually express fears tied to ableism, abusive practices, or bad public policies, they are often dismissed as over-anxious, irrational, or even delusional.
It’s one of the most common contradictions of being disabled. One day you are assumed to be fearful — the next, your actual fears are dismissed.
It’s also important to note that the fears involved here are different from incidental worries about everyday matters, or the mild background anxieties everyone has about the future. On top of these, disabled people can face unique, disability-rooted fears about existential threats. In this context, existential threat means, “a threat to a people’s existence or survival.” That is, threats to disabled peoples’ very existence — literally their lives, or more figuratively their whole way of living.
This may mean a disabled person’s fear of dying, or of some catastrophic life change. In many ways, the fear of some catastrophic life change is existential. It’s a fear of losing life as you know it.
Here are a few more specific examples of things disabled people fear, for themselves and their fellow disabled people:
Losing autonomy
This fear is not just about losing the ability to do things for yourself, but loss of control over both the details and direction of your everyday life. It’s one of the core fears of disability itself, especially for people who aren’t disabled themselves. It’s one of the biggest reasons non-disabled people fear becoming disabled. With the right support services and technologies, people who are already quite significantly disabled can still be fully independent. But that means they can lose independence too, even if their disabilities don’t change, from occurrences and decisions that are out of their hands and not even related to their actual disabilities.
For example, a quadriplegic who lives independently may fear a day when they can’t find or pay for home care, or their wheelchair breaks down and can’t be repaired or replaced in a timely fashion.
These fears are existential because they are about the very foundations of disabled people’s everyday lives and independence.
Not being listened to or taken seriously
One of the most significant types of ableism is the tendency to believe that disabled people can’t be relied upon to understand their own situations or relate accurate, rational accounts of what is happening to them. Put another way, disabled people are sometimes regarded as “unreliable narrators” of their own lives. This may seem like something less than an existential fear — a loss of respect maybe, but not life-changing or threatening. But people with disabilities constantly struggle for basic adult credibility. And when it’s lost, other pieces of their lives can start to collapse.
One of the most damaging ways this plays out is in health care, where people with certain disabilities and chronic conditions are much too frequently taken less seriously, or simply not believed. This can lead to inappropriate treatment and worse medical outcomes. It’s important to note too that this kind of erosion of credibility is multiplied and layered for people with disabilities who are also from other marginalized communities, such as people of color, women, and LGBTQ+.
Even disabled people who seem to be respected and treated well at present can harbor a deeper fear of someday being ignored and dismissed in ways that fundamentally undermine their practical independence and internal human integrity.
Poverty
People with disabilities are already more likely to live in poverty, or close to it. Over the last several years, disabled people have had 11 to 12 percent higher rates of poverty than non-disabled people. And while poverty rates in general go up and down with the economy, the gap stays remarkably wide even in the best of times. Also, many of those disabled people who aren’t poor now are always just one or two misfortunes or “wrong moves” away from it. And being poor doesn’t just threaten disabled people’s lives and safety. It cuts off most of the usual avenues for improvement, and drastically degrades their everyday quality of life.
For instance, a disabled person who has a job may lose it at any time. This can happen due to ordinary economic conditions of course, but also for more specific reasons like health changes, outright disability discrimination, or lack of workplace accommodations. At the same time, many disabled people who do work fear that by earning and saving too much they will lose some or all of the medical and financial benefits so many still need in order to bolster their health and financial stability.
Poverty is life threatening, both in the literal sense, and in its tendency to destroy a disabled person’s carefully built sense of stability and basic comfort.
Pain and suffering
This is in some ways the most abstract of these fears, but also the most concrete. It’s the fear not of occasional pain and sickness, even when it’s especially bad — but of pain and sickness that just goes on and on and may never end. There is also often a well-justified fear of chronic conditions that are beyond either the medical profession or society’s capacity or willingness to resolve them or make them livable.
Not all disabilities involve chronic, debilitating pain or sickness. But some do. And the tools to deal with them are often not as straightforward, available, or even allowed as purely practical accommodations like ramps for wheelchair users, audio books for the blind, or Sign Language interpreting for Deaf people.
This kind of fear is intensified by all too common misunderstanding, outright disbelief, and lack of cooperation from the medical professionals and legal authorities — who can for various reasons deny treatment, and in recent years criminalize pain relief. Unfortunately, this fear is one of the reasons why at least some disabled and chronically ill people seek the “right” to end their own lives. Lack of adequate support and understanding prompt some disabled people to weigh and actually “choose” between different existential fears — fighting one type of fear by giving in to another. It’s an unacceptable but not sadly recurring trade-off.
Preventable death
Catching, suffering, and dying from Covid-19 continues to be one of the most fundamentally existential fears faced by people with disabilities in the last 50 years. It’s not just the medical fear of catching Covid, or of having a worse outcome with it because of disability or chronic illness. It’s the clear sense that from the beginning, medical and government authorities simply haven’t cared enough to protect medically vulnerable people — and in fact may deep down believe there’s something natural happening if more elderly, disabled, and chronically ill people die.
Early in the pandemic, at least one lawmaker explicitly suggested that some vulnerable people should be content to die, if it means fewer disruptions to the economy and other people’s personal freedom. Now, most of the American public, even progressives and the Centers for Disease Control, which high risk communities once looked to for a more humane approach to battling Covid, appear to want to downplay the pandemic, while doing little more than voice vague concern for what that means for high risk people. Fear of Covid itself is bad enough. Fear of being deliberately abandoned to Covid is what feels existential to disabled and chronically ill people.
It’s not just Covid of course. Many people with disabilities and chronic illnesses fear death or disaster from unexpected sources, or from threats they know all too well, but few others recognize. These fears can at times be exaggerated. They can also be distorted, or misread, or unnecessarily debilitating. But none of these fears are irrational for people with disabilities. It’s also important for non-disabled people in particular to understand that most disabled people don’t spend all day, every day, in a state of terror. Most of the time, these are background fears. They are profound in their implications, but only impact our general outlook in certain situations. On the other hand, severe, specific threats like Covid-19 are much more than anxieties for people with disabilities — especially when fewer of their fellow citizens take the threat seriously.
All of us need to acknowledge, understand, and believe in the validity of disabled people’s existential fears. The point isn’t to feel sorry for them, or persuade disabled people not to be afraid, but to help address the situations and forces that produce their fears.
