Posted on Jul 29, 2022

What do you really need to know about disability? If you’re not disabled yourself, and don’t have a child, spouse, brother or sister, or parent with disabilities, how knowledgeable and up to date on disability issues are you expected to be?

When the Americans with Disabilities Act passed 30 years ago, expectations were lower than they are today, but not much. One of the undisputed strengths of the ADA is that it provided fairly detailed guidelines for how to accommodate a wide range of physical and mental disabilities. More importantly, it established what “equal opportunity” and “reasonable accommodation” means for people with disabilities. This gave millions of Americans, most for the first time, a clear set of principles on how to treat disabled people right, or at least fairly. For disabled people, this marked the successful end of a long first stage of the disability rights movement ... establishing that disability itself was as much a social, political, and human rights matter as it was a medical concern. For most Americans not already familiar with disability matters, it formed a solid base for building workable and humane relationships with disabled people they would come to know much better in the years to come.

But now in 2020, the question remains — what should ordinary people know about disability? How much should non-disabled people be held accountable for knowing, and what should disabled people still expect to have to explain? There are no definitive answers or boundaries. The ADA still offers the best guidelines. But 30 years later, we have all learned a bit more, and our thinking and expectations about disability have evolved.

Here are five things every person probably should probably understand today about disabled people and disability issues.

1. There are many different kinds of disability, and no one disability is any “better” or “worse” than another.

There are scores of specific conditions, and several broad types of disability. Each condition is different, and calls for different responses. They all produce some combination of practical barriers, medical and mental hardships within, and social hurdles and stigma imposed from the outside, from other people and social practices and systems.

Disability is vastly diverse, but disabled people share much in common. Unfortunately, there is also a widely understood if not officially acknowledged hierarchy among these disability types.

People with physical and sensory disabilities are often granted a somewhat higher social status, with comparatively less stigma and a quicker and easier acceptance by non-disabled society. Even when physical disabilities appear to be “severe,” people still tend to draw a distinction between physical disabilities and those that affect “the mind.”

Meanwhile, people with cognitive impairments are too often assumed to be less capable and more in need of supervision. They are in general more valued and appreciated than they once were, but are still treated less like full human beings with real agency than other disabled people.

People with learning disabilities ... and other less visible disabilities of all kinds ... are sometimes accepted, but more often doubted and accused of faking or exaggerating their conditions.

Even while public efforts to fight mental health stigma move forward and make progress, people with mental illness are the most often feared and despised among disabled people. Mental illness is still widely associated with violence and unpredictability. And lately, it has been casually and increasingly used as a rhetorical stand-in or explanation for political extremism and offensive beliefs, and in more than one political direction.

These divisions are of course fluid, and not everyone buys into them. There is much more recognition now that these hierarchies are invalid and destructive. However, it is important to be aware of how durable assumptions are, and to resist them, actively. It doesn’t help the cause of disability justice and equality to say, “Sure, you’re in a wheelchair, but at least there’s nothing wrong with your brain.”

2. All people with any disability should be treated with respect at all times.

Disabilities are different, and call for different responses.

People with physical and mobility impairments need decent canes, walkers, wheelchairs, and above all, barrier free homes and neighborhoods. Some also need everyday personal help to do everyday self-care tasks. Visually impaired, blind, hearing impaired, Deaf, and non-speaking people need adaptive devices, and understanding and patience from others to allow them the space and time to navigate the world, and to communicate and be heard. Intellectually and developmentally disabled people, as well as people with traumatic brain injuries and similar conditions may need a variety of support services and the freedom to use them without being controlled and confined by them. People with learning disabilities need the freedom to use the methods that work for them best. People with chronic illness or pain need understanding, and a bedrock acceptance of their invisible but very real disabilities.

As many disabled people and their allies point out, “one size doesn’t fit all” when it comes to responding to different disabilities. But crucially, different disabilities don’t justify different human rights, standards of respect, or basic priorities.

Regardless of the type and degree of disability, communicate with adults as adults.

Regardless of the type and degree of disability, disrespect, insults, and physical and emotional abuse are equally unacceptable regardless of type and degree of disability.

Regardless of the type and degree of disability, everyone is entitled to choices and the ability to exercise as much personal control they can, on their own or with assistance.

Finally, whatever support disabled people need, no matter how much, we all need to make sure that higher support needs don’t lead to depersonalization or abuses of power.

3. Disabilities can be hard, but they aren’t always terrible.

Most disabled people experience hardships directly and indirectly related to their disabilities. But many disabled people find that most of these hardships come from other people and the environment they live in, not their disabilities themselves.

It can help to think of a pie chart. For each person at different times, there is a different ratio between direct suffering from a disability, and indirect hardships imposed by other people’s ableism, systemic failures, and lack of accessibility. Some days, chronic back pain, sudden muscle spasms, or loss of mobility is much worse than physical barriers or interpersonal ableism. Other times, we can cope well with our impairments, but struggle gain access to the places we need to go, and process emotionally the onslaughts of insensitive, ableist comments that can come seemingly out of nowhere.

There is absolutely a lot disabled people endure and have to work through, but much of it is entirely unnecessary pressure from the outside. Disability hardships are real, but they don’t have to be, and everyone can help reduce them by the way we treat disabled people and accommodate their impairments.

It’s also important to note that a lot of the emotional and inspirational “takes” on disability that are so popular in social media memes and motivational writing depend on this mistaken and corrosive notion that disability is fundamentally a natural tragedy to be overcome. It’s not. It’s also off-base and unhelpful to casually poach disabled people’s hardships and experiences, run them through a simplistic, ableist filter, and use them as all-purpose motivators and object lessons for human courage and perseverance.

Disability isn’t a single, definable experience, and disabled people aren’t here to be anyone’s reality check or kick in the pants.

4. Some disabled people benefit from privilege, others not so much.

As the disabled “Game Of Thrones” character Tyrion Lannister says so succinctly, “If you’re going to be a cripple, it’s better to be a rich cripple.” Earlier in the story, he also acknowledges the benefits of his social status, noting that had he been born to an ordinary family instead of a noble one, he’d likely have been killed at birth. Disabled people of all backgrounds share many experiences, but intersecting inequalities break through as well and have a huge influence on how we all live with our disabilities.

Since so many of the hardships of disability are external to disabled people themselves, money and social status can do a lot to make living with disabilities easier and richer, both literally and figuratively. Privilege can’t by itself cure disease, lessen pain, or erase physical barriers and ableism. But money can pay for personal help, adaptive equipment, and a host of other material cushions to make life secure enough for a chance to be safe, fun, and fulfilling. And the social status of being white, male, heterosexual, cisgender, educated, or a host of other privileged identities can and often is used by disabled people to lessen the daily drag of ableism. Those who can’t have to endure multiple prejudices and barriers that not only overlap, but are additive.

This can often explain why some people with seemingly comparable disabilities thrive, achieve, and use the best technologies and techniques to live independent and fulfilling lives, while others are stuck in dependence, confinement, poverty, and stagnation. Of course personality, courage, and values play a role with all disabled people, but not nearly as much as most of us would like to think. This is important for two reasons.

First, it’s a much too common mistake and a cruel misjudgment to use “positive” examples of “admirable” disabled people to shame disabled people who are struggling.

Second, it should alert everyone to the fact that more disabled people could be independent and happy if their material and social conditions were improved. This is something we can all accomplish together, not just through changing our attitudes, but through changing policies that affect disabled people. But we have to commit to it and follow through.

5. What most disabled people want most deeply is to be seen, heard, believed, and taken seriously.

Visibility is a complicated matter for disabled people. One of the great ironies of living with disabilities is that while our disabilities are often impossible to miss, we ourselves often feel invisible and long to be noticed and acknowledged. At the same time, some of us work just as hard to not be noticed, to hide or sideline our disabilities in hopes of being seen and accepted for our other qualities. However, what we all share is a need to be acknowledged, as human beings like everyone else, and as people with very real and distinct disabilities.

One of the most common forms of ableism disabled people experience is not being believed. This happens most often for people with less visible disabilities, who need understanding and accommodations, but are so often outright regarded as fakers. But it happens to some degree to all disabled people. Somehow, things that we say about our experiences aren’t accepted as true the way they are for non-disabled people. We say we are happy. Impossible! We say we need help. But have we really tried to do it ourselves? We talk about disability discrimination. But how bad can it be really?

Above all, there is the constant feeling, sometimes sharp and specific, most often vague and hard to pin down, that we just aren’t seen as completely real. We feel either ignored, our accomplishments erased, or we are praised in ways that make us feel like kindergarteners getting a gold star. Some of this may be inside ourselves, a symptom of “internalized ableism.” But it also comes from a pervasive feeling we get from others that we are, fundamentally, not normal, not fully present. That’s why visibility, trust, and authentic respect is so important to us.

This is what you need to know about disabled people. For details beyond this … the how tos and specific accommodations … just ask disabled people themselves, when you need to. You’re not expected to know everything about disability, or to get it right every time. But standards are higher than they once were, and a little effort is both appreciated and, frankly, expected.

Original article: 5 Things Everyone Should Know About People With Disabilities