Having a disability is tiring. Every day you have to plan for things that other people just don’t have to.
Most “disability awareness” content, for Disability Pride Month and other occasions, tends to emphasize disabled peoples’ capabilities and resilience, while avoiding anything that suggests pity or inherent hardship.
There are solid reasons for this. It’s important to counteract the low expectations for disabled people that drive much of disability discrimination. Many disabled themselves want very much to project positivity, to the broader community and themselves as well. And it’s hard to figure out how to talk about the real barriers disabled people face, without sounding self-pitying or pleading.
But it’s worth revisiting now and then exactly what makes everyday life different for people with disabilities. The point isn’t to generate pity, or even empathy exactly. The goal is to foster practical knowledge of disability life, so disabled people’s needs might be better anticipated, and so their requests for accommodation are more readily accepted and met, rather than doubted, picked apart, and denied.
Every disabled person’s disabilities, experiences, and needs are different. And disabled and non-disabled people are still more alike than they are different. But here are seven things disabled people have to think about everyday – things that most non-disabled people simply don’t:
1. How far will I have to wheel, walk, or navigate?
When you go shopping, you have to be able to get from your car, or subway, bus, taxi, or a friend’s car, into the grocery store, and of course back with your purchases. When you have an errand to run – like a doctor visit, business meeting, or benefits appointment – you often have to get yourself from the office you thought you were supposed to visit to the office they say you’re supposed to go to. These kinds of appointments rarely go as planned, and when you have a disability, you have to plan for that too.
Wheelchair users have to worry whether surfaces will be level and smooth and if there are stairs in the way, with or without safely constructed ramps. A lot of people with mobility disabilities do walk, but have similar concerns about pathways, along with distance. People who are blind or visually impaired people need to think about navigation — how to get from place to place in unfamiliar environments that may be complex and full of unexpected barriers.
Everyday “walking around” and “taking care of business” that most people do almost without thinking takes a lot of planning and care for people with disabilities. This can be as cognitively taxing and emotionally stressful as it is physically wearing.
2. Is accessible, timely, reliable transportation available?
Many disabled people drive and have their own accessible vehicles. But a lot of disabled people don’t, and must depend on public transportation, taxis and services like Uber and Lyft, or rides from family or friends.
When you have a disability that affects mobility, every task outside your home involves more than not just your own capabilities. It forces you to ask whether transportation provided by other people is going to be available where you are going, whether or not it’s going to be on time, and if it’s genuinely accessible. Despite your own best efforts, the tiniest failures by other people and systems can throw all of your plans into chaos.
As a result, when you have disabilities the smallest errands in your own town are often as complicated and exhausting as a day of air travel in crowded airports.
3. Will there be a place to sit down?
It’s not so bad tiring yourself out to get somewhere if there’s a place to rest when you arrive. But disabled people can never be quite sure there will be a chair, a bench, or even a wall to lean against. This is an especially urgent concern for outdoor events, farmer’s markets and amusement parks, or at large, unfamiliar buildings like hospitals, government buildings, schools, and shopping malls.
Being confident ahead of time that there will be a place to rest can make a whole outing better and more accessible. Not knowing, or knowing there won’t be suitable places to rest, can easily prompt a disabled person to curb their plans, or suddenly cut an outing short.
4. Will I be able to go to the restroom?
This is a big one, especially for wheelchair users, or anyone who needs extra space and accessibility to use the toilet in a safe and dignified way.
On the plus side, it’s one of the accessibility concerns that is itself most accessible to non-disabled people. It’s easy to understand. The importance is obvious. What’s probably less well known is the decision-making process where most wheelchair users have to weigh the pain and even risk of “holding it” if there isn’t an accessible restroom, versus simply not going, not participating in whatever the thing is. Lack of an accessible restroom really can prevent some disabled people from eating at a restaurant, attending a meeting, voting at a polling site, or attending a family reunion.
It’s also important to note that restroom accessibility is difficult to test beforehand. Wheelchair users are often told in good faith that a restaurant or event will have an accessible restroom. Only later do they find that it’s improperly designed, or not accessible enough to be usable by them, with their particular disabilities. The “accessible” restroom that isn’t accessible is a particularly frustrating, limiting and humiliating “bait and switch” that people with disabilities know all too well.
5. Will the place be crowded, noisy, and chaotic?
Anyone with difficulty walking, wheeling, or balancing has to be concerned and vigilant about the size and mood of anticipated crowds.
The worry isn’t so much deliberate violence or calculated chaos. It’s mostly the careless, inattentive, random moving about of people who are used to a certain level of physical confidence and stability. It’s people who are mostly unaware of how precarious it can be for people with disabilities to simply be safe in a confined space with lots of other people.
This isn’t just a concern for people who use wheelchairs, canes, crutches, or walkers. Deaf and hard of hearing people have to worry about excessive noise, and sight lines to see Sign Language interpreting, (if it’s even provided). Blind and visually impaired people have to think about navigating crowded spaces safely too. And people with sensory issues, including many people with autism, can have widely varying tolerances for crowds.
Most disabled people want to socialize. But they have a lot of extra things to think about and try to plan for when crowds are involved.
6. Will I earn or save a little too much money this month?
Not all of disabled people’s worries are so physical and immediate. Some of the worst problems are bureaucratic. They are more abstract, technical, and arbitrary. But they can do far more than ruin a disabled person’s day. They can upend a disabled person’s whole life and independence.
For instance, disabled people who depend on government benefits and healthcare, but want to work and save, have to worry about accidentally losing eligibility for support. It’s a classic disability conundrum. Not working, or working less, can be more financially stable, if not more lucrative, than trying to work and develop some degree of financial independence.
There are rules designed to allow a gradual transition from benefits to full self-sufficiency. But a few more hours of work, a few more dollars earned or saved per month can still mean losing Medicaid, Medicare, Social Security, or other benefits like Food Stamps or heating assistance – while the disabled person is not close to being able to pay for the benefits lost. And if benefits aren’t fully lost, there is still the risk of overpayments, which can set up staggering, demoralizing debts that take years to pay off. It all complicates and even sometimes turns upside down the calculations most people make about earning a living, living by a work ethic, and pursuing a satisfying career.
Earning and saving too much money is a backwards problem that millions of disabled people don’t just know firsthand, but have no choice but to obsess over.
7. Will I encounter someone who stares, makes ableist comments, or refuses to deal with me at all?
As many disabled people will readily admit, the world is usually a friendlier place for people with disabilities than it used to be. Interpersonal ableism – like insensitive comments, rude staring, or outright discrimination – is much less common, or at least much different, than it was for disabled people 50 years ago.
But most disabled people also know that they can run into ableism any day, any time, in any situation. This can include anything from merely annoying to emotionally traumatizing interactions with people who, out of the blue, turn out to have gut-level problems dealing with disabled people politely and appropriately.
Any fully accessible appointment, errand, or event can be ruined by an awkward or insulting encounter. Other people’s ableism is never far from disabled people’s minds.
One of the best ways to be helpful to people with disabilities is to do whatever is in your power to whittle away at this list of worries. And the first step is knowing about them. It helps just to remember that whatever level of success a disabled person might show on the surface, there’s a ton of extra planning and strategizing behind it.
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