5 Difficult Questions Disabled People Struggle With Every Day
COVID-19 has done many things to people with disabilities. Along with visiting higher rates of death and suffering on us, as well as just plain fear, it has also highlighted some of our unique strengths. One of them is our ability to face and navigate difficult dilemmas few others face quite the way we do. But strengths usually come with a cost.
Non-disabled people who want to understand disabled people better would do well to think about the conflicting forces we have to struggle with every day. Everyone has to deal with hard choices in life. Disabled people have to contend with them more than most. And while we can often choose options that are better for us, in so many cases, there are no entirely right choices available. Here are 5 questions most of us who have physical, cognitive, or mental disabilities struggle with on a regular basis. It’s not always in these exact words. We’re not always aware of these inner debates. But the themes and implications are very real and alive to all of us.
1. “Should we push ourselves to do more, or rest and conserve our energies?”
Do we use a handicapped parking permit so we don’t have to walk or wheel so far to get to our shopping? Or, do we make a point to park further away, because we think our disability isn’t “bad enough” to justify using an accessible parking space, or because we’ve been told that exercise is good for us? Do we intentionally limit some of our productivity and experiences in order to focus on more important and enriching tasks? Or, does physical or mental exertion prove somehow that we’ve “overcome” our disabilities, or that we aren’t as disabled as other disabled people?
This question of where and how to allocate our efforts is one of the reasons why so many disabled people question the value of “hard work” as it is typically understood. Disabled people are often praised more for highly visible effort than we are for the usefulness of our actual achievements. So we have to decide whether to work hard to achieve a constructive purpose, or try to prove some kind of “toughness” to ourselves and others. There are social punishments and rewards either way. We may be seen as lazy if we give up some activities so we can do others. Meanwhile, we are sometimes labeled stubborn and inflexible if we “insist” on doing things “the hard way.”
We debate this question every day, every time we face a new task –– whether small and short-term, or large and long-term. A lot seems to ride on these choices. And we are pulled in opposite directions both within ourselves, and by outside pressures –– from society at large and even people closest to us.
2. “Should we avoid inaccessible places and events, or go anyway and do whatever is necessary to get in and participate?”
For wheelchair users and others with mobility or sensory disabilities, it makes practical sense to stick with restaurants, stores, and offices that are accessible, and avoid those that aren’t. Why waste time, energy, and money going to places where we know we can’t get in or receive adequate service? It’s bad enough to find out at the last minute that a festival or craft fair isn’t fully accessible. Intentionally going places that can’t serve us equally seems self-defeating.
But avoiding inaccessible places and events is also self-limiting. We are supposed to have equal access to all public goods and services. That’s what disability rights laws are for. Simply staying away from inaccessible places and events risks giving tacit consent to our own exclusion. And it’s good to periodically confront barriers, to remind people that inaccessibility and disability discrimination are real problems that need fixing. Plus, in some cities, neighborhoods, and towns, we have no choice. If there are no fully accessible grocery stores, doctor’s offices, or schools, we have to contend with inaccessible places. Our ability to “vote with our dollars,” as the free market tells us we should, is often extremely limited by a simple lack of more accessible alternatives.
On the other hand, when we do have a choice, not going to places and events we know are inaccessible can be an effective kind of boycott. It’s a principled refusal to give business to discriminatory businesses and institutions. This can be especially effective if we can get family and friends to follow suit, and if we are willing to let those facilities know why they are losing our business. But even proactive, empowering advocacy like this has downsides. It’s tiring to adhere to a strict routine designed to consistently confront accessibility problems. And this kind of day-in, day-out activism can become a counterproductive obsession, or devolve into just another kind of empty disability bravado.
When disabled people complain about the way our communities are still inaccessible, 30 years after the Americans with Disabilities Act, we are sometimes told to stop whining and “do something about it.” Which of course makes some sense. But many of those who toss off this advice have only a sliver of insight into the balancing act involved in being a strong, consistent advocate –– while trying to live our lives with some efficiency and enjoyment.
3. “Should we complain about casual ableism, or brush it off?”
When a friend or funny uncle thinks it’s witty and clever to call out to a person using crutches, “Hurry up, slow poke!” how should a disabled person respond? What should an electric wheelchair user do when a stranger yells, “You got a license for that thing?” –– for the fifth time the same day? What are people with communication and sensory disabilities supposed to do when people they have to deal with are unable or unwilling to even try to understand what they are saying?
There are hundreds of specific choices involved in dealing with the many kinds of everyday ableism. But they all boil down to two basic options: confrontation or toleration. Traditionally, the standard tactic recommended for most disabled people was to “fit in” and “get along,” to shrug off “minor” personal ableism, like jokes and insensitive comments and actions –– maybe even laugh along. Don’t be offended. Don’t take yourself too seriously. Disabled people even bought into this and recommended this “easy-going” approach to each other. Some of us still do.
But it’s becoming more socially accepted and approved now to confront ableism, even when it’s just a “harmless” bit of “good-natured” fun. This is partly thanks to specific advancements in thinking about disability rights. It’s also a product of the way today’s broader culture is becoming more attuned to all forms of social injustice. Whatever else people may think about today’s intensified focus on language and behavior towards marginalized people, it has at least begun to allow them to stick up for themselves in ways that have a chance of being understood and accepted. As a result, disabled people finally have truly viable choices of how to respond to ableism. We don’t have to just take it and smile so people will feel comfortable with us.
Still, for most disabled people it’s a difficult, sometimes agonizing choice either way. Each time we let yet another comment or exclusion go is more painful. Any individual instance might be merely annoying, but it accumulates. And the repetitiveness and sheer predictability of most everyday ableism tends to make it more galling, not less. On the other hand, asking people to stop their little jokes, forcing them to think more deeply about how hurtful they can be, can feel like a huge and very personal risk. Is it worth making a small stand over a relatively insignificant insult, when it might sow family conflict, or poison a valued friendship? Is it worth insisting on more courteous and accessible service if it creates a fuss in public? It’s better to have choices, but that doesn’t make choosing easy.
4. “Should we ask for help and accommodations, or try to do without them as much as possible?”
How badly do we have to need that jar of peanut butter on a high shelf to bring us to ask a stranger or a store clerk to get it down for us? How far wrong do things have to go at work before a disabled employee really feels able to ask for accommodations? How far behind does a disabled college student have to get before they risk the bureaucracy and humiliation of asking for extended test time or other “special” arrangements?
Despite much greater awareness of ableism and disability rights, disabled people today often still feel passively encouraged to be “low maintenance.” This is especially true in high-stakes settings like education, health care, and employment. It’s an uncomfortable truth so ingrained in us that it rarely has to be stated: almost any disability can be accepted, as long as we don’t let it inconvenience anyone. Most disabled people understand this, even if we don’t fully accept it. So there are very obvious incentives to either do for ourselves, or else quietly leave things undone.
At the same time, if we fail at something, or literally fall on our face, someone will inevitably criticize us for not having asked for help. And of course, failure brings its own punishments, in lost opportunity, damaged reputation, and both physical and emotional harm. Asking for help and accommodations is part of life for most disabled people. We often pay a price for it, in unnecessary hassle and, for too many of us, in embarrassment and shame. Asking for help, even when it’s freely given, also requires us to reveal invisible disabilities, or explain seemingly obvious ones. And that carries its own risks of more discrimination down the line. But if we try to go it alone all the time, we pay another kind of price, also with important short and long-term implications.
In some ways, whether and when to ask for help is a simple calculation. Logically it should be based solely on our actual functional abilities, our carefully considered priorities, and the practicality and quality of help available. But we can’t ignore the extra costs imposed by ingrained ableism, and by ableist habits in the institutions we deal with –– and in ourselves as well.
5. “Should we talk about our disabilities with others, or avoid revealing or mentioning them?”
Again, people generally find it easier to accept and overlook our disabilities if we don’t talk about them much. People are often curious, but curiosity isn’t always the same thing as interest. They want their burning questions about wheelchairs, dyslexia, Sign Language, or chronic pain answered, but they rarely want to hear about how we experience our disabilities. And even fewer want to know much about the ableism and discrimination that makes our disabilities so much more difficult to live with than they have to be.
Most people would rather we kept information about disabilities to ourselves –– except when they believe they really need our information and insight. Businesses, professionals, and government offices have varying ideas about how much they need to know about us in order to serve us. Friends and coworkers may sometimes decide out of the blue that it’s time for us to share, and resent it a little if we won’t. Most annoying of all is when someone is called out for ableist behavior, and their response is to demand that we “educate them” –– as if it’s our responsibility to equip them to treat us better. Of course there is a logic to this. Sometimes we are better qualified to inform people about disability issues. But all too often it feels more like an imposition than an opportunity. At the very least, it adds another layer of complexity to difficult decisions we all have to make about discussing our own disabilities.
There are pros and cons to being open about our disabilities and sharing our feelings about them. In some ways that’s unavoidable. It’s the many ways our sharing can be misused that creates the dilemma. We can never really be sure when our sharing will pay off and be of real value, and when we will come to regret it.
Difficult choices like these come with the territory. They are inherent in having disabilities. However, most of these no-win situations are that way at least partly because of the mixed-up and contradictory expectations that the largely non-disabled, ableist world imposes on us, often without realizing they are doing it. What disabled people need is social space and acceptance of our choices –– and less rigid expectations for how disabled people are supposed to deal with the difficult choices involved living with disabilities.