What Defines Members Of The “Disability Community?”

Five different-colored stick figures representing five types of disabilities

The do we mean when we talk about the “disability community?”

Most obviously, we are talking about disabled people. Here is my own definition of what counts as “disabled” … https://disabilitythinking.com/disabilitythinking/2017/9/23/whos-disabled?rq=Definition%20disability

/“If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.”/

But, if I have absorbed one thing over the last several years of disability blogging and immersion in online disability culture and activism, it’s that being one of the disabled population isn’t the same thing as being a part of a disabled community.

Sometimes, when people refer to the “disability community,” they do actually mean the total population of all disabled people, however they define disability. But often I think what we are really talking about is people with disabilities who have a certain approach and orientation to disability as an experience , and towards other disabled people. When we say, “The disability community is concerned about ___,” what we usually mean is that a group of disabled people with some degree of unity and common viewpoint have an opinion about something … not that all disabled people think a certain way.

Now, as soon as you start talking about who is and isn’t part of a “community,” you sound like you are making judgments and encouraging elitism. Maybe that’s unavoidable. All I can say is that I try to keep that to a minimum. Being part of the disability community isn’t necessarily a good thing, and not being involved in it isn’t necessarily bad or inferior. It’s just a different way of being with your disability.

So, what makes a person part of the “disability community?”

First of all, there are a few criteria that are often implied, but I want to reject.

• You don’t have to know or “follow” certain famous disability activists, celebrities, or online “influencers.”

• You don’t have to be a liberal, a Democrat, or a progressive.

• You don’t have to adhere to a strict list of approved positions on key disability issues.

• You don’t have to use only certain approved words and phrases to talk about disability.

Some people may treat these as requirements, but I don’t think they should be. But I do think it’s useful to note some of the common characteristics of disabled people who are in the disability community … in addition to actually having disabilities. For example:

• Whether or not they actually use the word “disabled” or “disability,” they are comfortable identifying themselves in some way as disabled. They don’t insist that their disability is unimportant.

• While they may work to improve their general health and everyday capabilities, they don’t spend much time trying to hide, lessen, or cure their disabilities.

• They know other disabled people and are interested in meeting others. They regularly share and discuss their disability experiences with other disabled people.

• They feel some kind of instinctive emotional kinship with other disabled people.

• They recognize that at least some of the difficulties of living with disabilities come from external factors, such as ableism, discrimination, inaccessibility, and bad policies and practices.

• They are open to the idea of working with other disabled people to make live better for all people with disabilities, not just to solve their own individual problems.

• They have an interest in connecting with other disabled people, disability advocacy groups, and disability culture … in person or online.

• They recognize that to at least some extent, people with many different kinds of disabilities share common experiences, common priorities, and the same basic human rights.

• They have definite opinions and beliefs about disability and disabled peoples’ place in society. These opinions may evolve, and sometimes change, but they are always an important part of their thinking.

How do you describe being a member of the disability community?

A note here about non-disabled people …

My feeling is that family, doctors, therapists, teachers, counselors, and other service provides aren’t part of the disability community unless they have disabilities themselves. Otherwise, the term ally should apply … and that label shouldn’t be treated lightly or like some kind of second prize.

A Poll I’d Like To See

Illustration of poll question boxes with a red check mark

I think it’s time for a new opinion poll of the disability community.

One of the frustrating things about disability writing, social media, and activism, is never being sure how much of the “disability community” is actually interested, or would even agree with what we’re saying and doing.

As disability activists, we take a lot of stands and priorities based on our own convictions, but backed up by rather vague ideas and instincts we have about what the disability community looks like and how most disabled people actually think. We may have sound ideas about what is important in disability policy and social progress. But we know surprisingly little about how many of our fellow disabled people actually share our views.

The Gallup organization did an opinion poll of disabled people many years ago, but I haven’t seen anything quite as thorough since. And as I recall, that poll didn’t ask much about how disabled people think about their disabilities, or really explore the differences in perspective that may be tied to different kinds of disabilities, different lengths of time having disabilities, and exposure to “disability culture.” So here are some poll questions I would like to see asked of the broad disability community, by professional pollsters who know how to gather accurate data on public opinion.

What questions would you ask if you could design a comprehensive disability opinion poll?

What kind of disability do you have?

1. Cognitive
2. Physical
3. Mental / Psychiatric
4. Sensory (Visual / Hearing)
5. Autism
6. Chronic Illness / Chronic Pain

How did you become disabled?

1. Born with obvious, identifiable, and more or less lifelong disabilities.
2. From illness or accident.
3. Always had a disability, but just recently identified or explained.

How do you locate your disability?

1. It is very specific to one two aspects of my body, mind, or functions.
2. It involves most of my body, mind, or everyday functions.

How do you experience your disability the most? (Rank from least to most relevant to you)

1. As a medical condition requiring treatment.
2. As a social condition requiring legal protections and work against prejudice.
3. As a practical problem requiring accessibility and accommodations.
4. As an economic problem requiring financial opportunity and security.

How old are you?

Which state do you live in?

What kind of community do you live in?

1. Urban
2. Suburban
3. Rural

What is your annual income?

What best describes your employment status?

1. Not employed for pay
2. Work, but not for pay
3. Work, but for less than minimum wage
4. In a sheltered workshop or regulated work program
5. No outside work, just personal self-care and day to day chores
6. Part time work for pay
7. Full time work for pay
8. Occasional or seasonal work for pay
9. Freelance for for pay

Is it a current desire / priority for you to work for pay more than you do?

Do you rely on government benefits for any of your monthly income?

How do you pay for health care?

1. Private health insurance
2. Medicare
3. Medicaid
4. Mainly out of pocket, through fundraising, or using free care when available

What is your living situation?

1. In my own home / apartment, without help.
2. In my own home / apartment, with regular help.
3. In my parents’ home.
4. In a nursing home, group home, or other regulated facility.
5. With roommate(s)
6. Don’t have a regular home / shelter.

Are you married / living with a romantic partner?

How do you get around your community?

1. Drive
2. Walk / wheel as a pedestrian
3. Taxis or public transportation
4. Specialized disability transport
5. No regular means of getting around

How long have you had your disability?

Do you participate in disability conversations and reading online?

Do you have friends who have disabilities?

Do you participate in any kind of disability issue advocacy, in person or online?

And of course it’s always useful and important to ask some demographic questions …

How do you identify yourself in terms of race and / or ethnicity?

How do you identify yourself in terms of gender?

How do you identify yourself in terms of sexuality?

How do you identify yourself in terms of religion?

How do you identify yourself in terms of politics or ideology?

How do you identify yourself in terms of social and / or economic class or status?

Not So Brilliant Maybe?

I’ve been thinking a lot this week about disability “innovations” that aren’t as great as they seem to be. For example:

Special ID cards and police registries for disabled people

Parents of autistic and developmentally disabled children have been pushing for practical solutions to the risk of police violence against their disabled kids. One of the more popular ideas is creating I.D. cards developmentally disabled, and deaf people can carry that explain to police that they are disabled, and so may not behave in expected ways when confronted by police.

Grid of four different disability symbols with a light bulb image over them

This is one of those disability-related “innovations” that can seem practical and sensible, but only if you have a certain kind of idea about what the problem actually is. If disabled people’s tragic encounters with police are solely about miscommunication and lack of information about specific disabilities, then informational I.D. cards make sense.

However, if you factor in deeper, more entrenched ableism, and especially racism, then I.D. cards seem not only inadequate, but possibly dangerous.

Police are first and foremost people, who live in the present society, and carry the same kinds of ingrained prejudices other people have. These prejudices may be slightly reduced or short-circuited by training, but it’s doubtful at best that they can be completely undone. In tense law-enforcement situations, police officers may not take the time to read and absorb the information on an I.D. card, and may in any case react on instinct, complete with lifelong prejudices. And it’s certainly not unheard of for people in positions of authority to doubt the validity of people’s “special” claims of disability. Just look at the doubts people have about paperwork, insignias, and “certifications” for service animals and “handicapped” parking. People are suspicious that these things are obtained dishonestly. It’s not hard to imagine an officer thinking that a disability I.D. card might be misused.

Even more simply … what do we expect could happen when a developmentally disabled, autistic, or deaf person, with a gun pointed at them, moves to retrieve and show an I.D. card? Would police be reassured when a suspect puts their hands in their pockets or into a purse for their I.D. in a high-tension situation? And yeah, it’s only sensible to ask, what if the person is also black?

Disability I.D. cards seem to be another solution thought up by people with a basic trust in authority and rational communication … neither of which is very reliable in police encounters these days.

Wheelchairs that climb stairs

A few tech inventors have been trying for years to perfect and market a stair-climbing wheelchair. People who are excited about them seem to have one or two main reasons for their enthusiasm:

1. They are fascinated by new, high-tech solutions to the problem of poor accessibility. They’re cool!

2. They gravitate towards individual solutions that don’t depend on broader and seemingly harder to achieve improvement in physical accessibility,

Pessimism about the social goal of universal accessibility leads them to seek a personal way around the problem.

Meanwhile, it’s interesting and possibly significant that non-disabled people seem overall to be more interested in stair-climbing wheelchairs than actual wheelchair users.

Then there is the implied evasion of the social responsibility to promote general accessibility. If these cool wheelchairs somehow become standard equipment for wheelchair users, maybe we can all stop worrying about accessibility. Intentionally or not, this reinforces the idea that disability is a personal problem that disabled people are responsible for adapting to, not a social problem for society as a whole to deal with.

The problem is that these wheelchairs are only ever likely to be practical and affordable for a handful of wheelchair users. They are no use at all for people who are mobility impaired but aren’t wheelchair users, and no use to people who can’t afford these wheelchairs’ huge price tags. Also, they don’t seem practical for anything but climbing stairs. They don’t look suited for everyday wheeling around, especially in confined spaces like small homes or along narrow pathways.

Finally, they just don’t look safe, do they?

Retail businesses staffed by disabled workers

I got into a lengthy Twitter discussion this week about a “feel good” news story focused on an ice cream shop in Texas where most of the employees have developmental disabilities. Are these kinds of retail businesses designed to employ disabled people a big improvement over sheltered workshops? Are the owners praiseworthy innovators in the field of disability employment?

The only fair answer is “maybe” and “sometimes.”

It is of course possible for someone to start a business with the deliberate aim of providing paid jobs to disabled people in a public, mainstream environment that’s essentially the same as other retail businesses … and for the right reasons. If they pay Minimum Wage or above, don’t claim the legal right to pay less, provide avenues for advancement, include non-disabled workers in the mix, and include at least some disabled people in ownership or management, it could be a good thing.

But these crucial factors are rarely addressed in the inspiring “human interest stories” done about them, the ones that usually come at the end of a nightly news program to make you feel good. Journalists especially should look much more critically at how disability-related employment ideas actually work, and what the owners are really doing. Do they participate in media stories in order to promote general improvement in hiring disabled people in all workplaces? Or, are they taking a bow for being a humanitarian? Does the story focus on the actual disabled workers and how they feel about their jobs? Or, is it all about grateful parents and community leaders heaping praise on a charitable enterprise?

And what are we to think when the owner says something like this, from the article linked above?

“It amazes me … how hard it is to get good help, especially in an economy like this where you’re paying $10 an hour for busboys and they’re not sticking around,” says Landis. “The answer to me is the special needs population.”

This should be a big red flag for possible exploitation, intentional or not.

Are the disabled workers paid less than $10 an hour because their disabilities and prejudice in the job market make it impossible to find a better paying job?

Do disabled employees “stick around” because they feel they have no other options, and everyone in their lives tells them they should be grateful for having a job at all?

How do we draw a distinction between touting the quality and reliability of individual disabled workers, and “selling” disabled people as cheap, easy to handle employees … who won’t quit no matter what?

Any of these “innovations” can be valuable to some disabled people, in some very individual and very specific situations. The problem comes when they are offered as a panacea for deeper problems that society just doesn’t wish to deal with … problems like accessibility of the infrastructure, ableism and racism, and the balance between business profitability, fair labor practices, and a living wage.

Parent's Magazine: I’m an Adult With a Disability: Here’s Why I’m Optimistic About Kids With Disabilities Today

The word “PUBLISHED” spelled out on wooden letter cubes

I’m an Adult With a Disability: Here’s Why I’m Optimistic About Kids With Disabilities Today
Parents Magazine - August 20, 2019

This turned out to be a bit more optimistic than I usually am about disability matters, at least on a day to day, short-term basis. But there is little point directing pessimism towards disabled kids’ families. And I really AM optimistic about the long-term future of disabled people. Disability culture and our place in society is generally moving in the right direction.

Monthly Reading List - June 2019

Disability Thinking - Monthly Reading List

The best things about disability I read last month …

An Open Letter to Lupita Nyong’o and Black Filmmakers
Imani Barbarin, Crutches & Spice - April 7, 2019

This is a necessary post that explains why disability representation is so important in movies, and how the ableism experienced by black disabled people is unique and distinct from either ableism or racism by themselves.

People With Disabilities Face Challenges Campaigning
Abagail Abrams, Time - June 12, 2019

Ms. Abrams does a terrific job exploring the current state of disability in politics, while introducing a new National Council on Independent Living program aimed at helping disabled people run for office.

It’s Perfectly OK To Call A Disabled Person ‘Disabled,’ And Here’s Why
Brittany Wong, HuffPost Life - June 14, 2019

Everyone who writes anything about disability eventually tries to explain our terminology wars. But this one is worth reading. It might be the definitive word on the words we use.

2020 candidates: none of them have accessible websites for disabled people
s.e. smith, Vox.com - June 26, 2019

This article not only highlights the fact that campaign websites aren’t accessible. It also gives a very good overview of disability issues in politics to show why campaign website accessibility is more than a technicality.

The Olmstead Decision & Me
Alice Wong, Disability Visibility Project - June 26, 2019

It’s hard to explain the nursing home vs. home care issue in a clear and emotionally resonant way. If you know someone who needs to understand, this is a great start.

Rooted In Rights: Here’s Some Free Advice for Presidential Candidates on How to Talk About Disability

The word “PUBLISHED” spelled out on wooden letter cubes

Here’s Some Free Advice for Presidential Candidates on How to Talk About Disability
Rooted in Rights - June 25, 2019

An effort to put together the disability community’s varied and sometimes contradictory feelings about disability rhetoric, and offer candidates some practical advice on how to talk about disability right.

Monthly Reading List - May 2019

Disability Thinking - Monthly Reading List

The best things about disability I read last month …

Are You Inspired by That Disabled Person or Shocked They Were Included?
Imani Barbarin, Crutches & Spice - May 30, 2019

Inspiration Porn, in all its many varieties, never seems to die. This “America’s Got Talent” performance promoted the latest version, and Imani Barbarin is on it with a crystal clear explanation of one of the reasons why it’s a problem, and an impassioned “Stop it!” for both popular culture and everyday participants in social media.

Tyrion Lannister, Dwarf Identity, and the Struggle for Agency
Dr. Joseph Stramondo, Rooted In Rights - May 21, 2019

The end of the long running TV epic “Game Of Thrones” renewed and complicated debates over the meaning and impact of the show’s iconic disabled characters. This is a particularly interesting look at probably the show’s most loved and admired character.

Disabled people need more ramps, not more fancy new gadgets
s. e. smith, Vox.com - April 30, 2019

Innovative technology has always been viewed as one of the keys to independence for people with disabilities, and for good reason. But there definitely is at least a sub-genre of disability gadgets that miss the mark, mainly because what disabled people need most often doesn’t match up with what looks awesome to non-disabled people.

“It’s a Spectrum” Doesn’t Mean What You Think
C. L. Lynch, The Aspergian | A Neurodivergent Collective - May 6, 2019

This is one of the most helpful explanations I have seen so far of the “neurodiversity” view of autism. Given how contentious the competing views are, explainers like this are incredibly valuable.

Taking Up Space - New Mobility
Reveca Torres, New Mobility - May 1, 2019

A lot of internalized ableism boils down to disabled people feeling ashamed for “taking up space.”