Plan to avoid failures
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Being disabled is exhausting. It requires daily planning that other people don’t have to do. And yet most of the “disability awareness” content offered during Disability Pride Month and other occasions tends to emphasize the capabilities and resilience of people with disabilities, and avoids any suggestion of pity or unique challenges.
There’s good reason for this: it’s important to counter the low expectations of disabled people that drive much of ableism. Many disabled people have a strong desire to project a positive image to the wider community, to themselves, and to each other. And it can be difficult to find ways to talk about the real barriers disabled people face without sounding self-pitying or pleading.
But it is worth reflecting from time to time on what makes the daily life of disabled people different. The point is not to elicit sympathy or empathy. The goal is to foster practical knowledge about the lives of disabled people, to better anticipate their needs, and to ensure that their requests for accommodation are more easily accepted and met, rather than doubted, criticized or rejected.
Every person with a disability has different disabilities, experiences, and needs, and disabled and able-bodied people have more in common than they do differences. But here are seven things that disabled people have to think about every day that most able-bodied people don’t think about:
1. How far will you need to wheelchair, walk or travel?
When you go shopping, you have to get from your car (or subway, bus, taxi, or friend’s car) to the grocery store and, of course, pick up your purchases and go home. When you have to run errands, like doctor’s appointments, business meetings, or benefits appointments, you often have to get from the office you were supposed to go to to the office you were supposed to go to. These appointments rarely go as planned, and if there are obstacles, you have to plan for those too.
Wheelchair users have to worry about whether the ground is flat and smooth, or whether there are stairs, safely constructed ramps, etc. Many people with mobility impairments walk, but still have similar concerns about routes, not just distances. On the other hand, people with visual impairments have to think about navigation – how to get from place to place in unfamiliar environments that may be complex and full of unexpected obstacles.
The everyday tasks of “getting around” and “running errands,” which most people perform almost automatically, require a lot of planning and thought for people with disabilities, which can be cognitively taxing and emotionally stressful just as much, if not more, than the physical ones.
2. Is transportation easily accessible, on time, and reliable?
Many people with disabilities drive and have their own cars. However, many people with disabilities do not own cars. They must rely on public transportation, taxis, services like Uber and Lyft, or getting transportation from family or friends.
When you have a mobility disability, any task outside the home requires more than your own capabilities, forcing you to ask yourself whether the transportation provided by others is available where you are going, will run on time, is available at all, etc. Despite your best efforts, even the slightest misstep by others or the transportation system can throw your entire plan into disarray.
As a result, for people with disabilities, even running a simple errand in their own town can be as complicated and exhausting as a day of air travel in a crowded airport.
3. Is there somewhere to sit?
Getting tired and going somewhere isn’t so bad if there’s a place to sit and rest when you arrive. But for people with disabilities, it’s never certain there will be a chair, a bench, or even a wall to lean against. This is an especially pressing concern at outdoor events, farmers’ markets, amusement parks, and large, unfamiliar buildings like hospitals, government offices, schools, and shopping malls.
Being sure in advance that there will be a place to rest will make the whole outing better and more doable. Not knowing or knowing that there is no suitable place to rest can lead people with disabilities to abandon their plans or cut the outing short abruptly.
4. Can I go to the toilet?
This is a particular issue for wheelchair users and others who require extra space and accessibility to use the toilet safely and with dignity.
On the positive side, this is one of the most accessible accessibility issues for people without disabilities. It’s easy to understand. The importance is clear. What is less known is the pain and risk most people who use wheelchairs experience by “putting up” when there are no accessible restrooms, and the decision they make to simply not go, not participate in whatever it is. The lack of accessible restrooms can prevent a person with a disability from eating at a restaurant, attending a meeting, voting at a polling place, or attending a family reunion.
It’s also important to keep in mind that testing restrooms for accessibility in advance is difficult. Wheelchair users are often told in good faith that a restaurant or event has an accessible restroom. Only later do they find out that the restroom was poorly designed or insufficiently accessible for users with certain disabilities. Turning out an accessible restroom is not accessible is a particularly frustrating, restrictive, and demeaning “bait-and-switch” tactic, and people with disabilities know it all too well.
5. Is the place crowded, noisy or chaotic?
Anyone with walking, wheelchair use or balance difficulties should be concerned and wary of the expected crowd size and atmosphere.
It is not deliberate violence or calculated disruption that is of concern. The greatest risk is the careless, absent-minded, random or drunken movements of people who take a certain degree of physical confidence and stability for granted. Few people realise how dangerous it can be for disabled people to feel safe in confined spaces with large numbers of people.
This isn’t just an issue for people who use wheelchairs, canes, crutches, or walkers. People who are hearing impaired must be mindful of excessive noise and the need to sight-line to see printed instructions and sign language interpretation (if provided). Blind and visually impaired people also must figure out how to move safely through crowded places. And people with sensory disabilities, including those with autism, may have very different tolerances for noisy crowds.
Many people with disabilities want to be social, but being in a crowd requires a lot of thinking and planning.
6. Will I earn or save a little too much this month?
Not all of what ails disabled people are physical and immediate problems. Some of the worst problems are bureaucratic. They’re more abstract, technical, and arbitrary. But they can do far more harm than ruin a disabled person’s day. They can upend a disabled person’s entire life and independence.
For example, people with disabilities who rely on government benefits or health care but want to work and save must worry about accidentally losing their eligibility for assistance. This is a classic disability conundrum: they may be more financially stable and more profitable by not working, or by working less, than by working and striving for some degree of financial independence.
In the United States, we have rules designed to allow a gradual transition from welfare benefits to complete independence. But working a few more hours or earning or saving a few more dollars a month can mean losing Medicaid, Medicare, Social Security, or other benefits like food stamps or heating assistance. Disability income isn’t enough to make up for that loss. And even if you don’t lose your benefits entirely, you’re still at risk of overpaying and could end up in staggering, demoralizing debt that takes years to repay. All of this complicates and sometimes upends the calculations most people make about making a living, living by a work ethic, and pursuing a satisfying career.
Making too much money and saving too much is a paradoxical problem that millions of disabled people not only know firsthand, but can only obsess over.
7. Will you encounter people who stare, make ableist comments, or simply refuse to engage with you at all?
As many disabled people will readily acknowledge, the world today is a friendlier place for people with disabilities than it was in the past. Interpersonal discrimination against people with disabilities — insensitive remarks, rude stares, and outright discrimination — is far less common than it was 50 years ago, or at least has changed a lot.
But most disabled people also know that they can encounter ableism at any time and in any situation. This can be merely an annoyance, or it can suddenly become devastating and emotionally traumatic in interactions with people who reveal they still have an instinctive problem treating disabled people respectfully and appropriately.
A perfectly accessible appointment, errand, or event can be ruined by an awkward or demeaning encounter. Ability discrimination by others is ever-present in the minds of people with disabilities.
One of the best ways to help people with disabilities is to do everything in your power to chip away at their list of worries, and the first step is to learn about them. It helps to simply remember that no matter how successful a person with a disability may appear on the surface, there’s a lot of planning and strategy behind it.