Things Disability Activists Shouldn’t Do

“Please don’t!” in bold black letters, next to a yellow smiley face, on a white background

I hope this list of “don’ts” isn’t just a list of my personal pet peeves. I tried to focus on bad and harmful habits that are at least somewhat common among disability activists, especially new ones. I’ve also tried to stick to ideas and rhetorical practices that are specific to the disability community … not just annoying personal qualities anyone might have. And while I personally disapprove of them, I hope people will read this list as helpful, not scolding. I have done most of these things at some point in my life as a disabled person. I probably still do some of them sometimes now. None of us is perfect. But at least we should have some idea of where perfection might be found, and where it decidedly can’t.

So, if you’re going to do disability activism, here are some things to avoid:

Don’t complain about “other minorities” having more power, recognition, support, etc. than disabled people.

I can’t count how many times I’ve heard a disability activist complain about the disability community’s lack of recognition and power by implying that other “minorities” are somehow better off than “we” are. First of all, it’s not true. Second, our movements and communities overlap. There are disabled people who are also people of color, LGBTQ+, immigrants, etc. So our “groups” aren’t even totally separate. Finally, justice isn’t a limited commodity to fight over, and resenting other peoples’ perceived status or advantages is corrosive, offensive, and pointless.

Don’t compete for power, recognition, and support with people who have disabilities that are different than yours.

This is another variation on the same habit of zero-sum competition. “Severely” disabled people think more “mildly” disabled people hog all of their their resources, and vice versa. Every disease and condition wants to be considered the top priority, and simultaneously viewed as the most disadvantaged. Different disabilities do include different experiences, hierarchies do unfortunately exist between disabilities, and total unanimity among disabled people is neither possible nor even desirable. But deliberate competition and resentment between disability groups for shares of a supposedly limited pie is terribly destructive, and helps exactly nobody.

Don’t try to improve perceptions of your disability by saying that it’s better than having some other kind of disability,

“It’s my legs that don’t work. There’s nothing wrong with my mind!” may be the ugliest and yet most common line of argument disabled people use to sidestep stigma and bolster their social status … as if people who DO have “something wrong with their mind somehow deserve prejudice and condescension. Disability activists should fight ableism, not try to doge it or deflect it onto others.

Don’t accommodate people with some kinds of disabilities and then make accommodating others a lower priority.

This should be obvious. If you believe non-disabled people should make things accessible to your disability, then you should do all you can to make everything you do accessible to people with any disability. And yet, disability organizations regularly treat certain accommodations as extras or ad-hoc “if requested.” This is an especially common problem for people with intellectual disabilities, as well as for blind and deaf people.

Don’t attempt to craft a more “positive” image of disability by centering people perceived to be more conventionally attractive or appealing.

This practice of handing leadership and the proverbial microphone to the kinds of disabled people thought to be most appealing and relatable … white, young, physically disabled, (not mentally or intellectually), and verbally articulate … is at least somewhat understandable from a conventional P.R. perspective. But it is also deceptive, exclusionary, and wasteful. It’s a rarely questioned or even acknowledged practice that the disability community, in particular, needs to think about a lot more than it does.

Don’t try to police who should and shouldn’t qualify as “disabled.”

People with chronic illness, mental illness, and learning disabilities are often regarded as marginal or provisional “members” of the disability community … and not just by non-disabled people. If a person has a condition of any kind that they have to think about and adapt to every day, and if they are affected by ableism, (even misplaced ableism), then they should be considered disabled, with no caveats or asterisks. Disability is more than wheelchairs.

Don’t judge or disparage individual disabled people for choices they make for themselves in their own lives.

This is tricky. It’s fine to criticize fellow disabled activists for activism tactics and disability ideas you disagree with. But it’s a good, unifying rule of thumb to hold back any disapproval you may feel for any disabled person’s individual life choices. For example, a disabled person living with their parents or in a nursing home, choosing not to learn how to drive or pursue employment, the words they choose to describe their own disabilities, and whether and how they may strive for medical cures and therapies, should be off limits for individual judgment. As disabled people, we should all be fully aware of the many complex forces, circumstances, and reasons each of us has for doing the things we do in our own personal lives … and the utter folly of judging how any one disabled person handles their life.

Don’t dismiss other disabled people’s claims of ableism simply because you happen to think their specific claim might not be valid.

Some disabled people experience far more ableism than others. Those of us who are disabled but also benefit from generally good social status and support sometimes find it hard to believe just how horrifically some disabled people are treated. Skepticism is good! But some of us take a little too much pride in grilling other disabled people about their own stories. You don’t have to believe everything another disabled person says, but there’s essentially no value in loudly disbelieving them in a public way. And there is really no down side to giving fellow disabled people the benefit of the doubt. Also, really, really bad stuff does happen to disabled people, even if nothing so terrible has ever happened to you.

Don’t try to claim that you can’t possibly be ableist, or do or say an ableist thing, because you yourself are disabled.

Ableism is woven into the fabric of society. Disabled people are members of society. So it’s not only possible for disabled people to harbor some ableism, it’s unsurprisingly common. And having a disability doesn’t make anyone immune to being ableist. You, too might be ableist from time to time. It’s not good, but it’s not the end of the world either. Just realize it, deal with it, and try to do better.

What other “don’ts” would you suggest for disability activists?

Monthly Disability Reading List - September 2019

DISABILITY THINKING - Monthly Reading List

Three things about disability I read last month …

No, Bringing Back Mental Institutions Won’t Stop Mass Shootings
Maggie Koerth-Baker, FiveThirtyEight - August 27, 2019

It’s always helpful to review the hard data disproving the connection between violence and mental illness. So many people think it’s just common sense, but it just isn’t.

Do All Disabled People Think The Same?
Jubilee, YouTube - September 1, 2019

The answer is “Of course not!” but it’s fun to see it dramatized by real disabled people in fun exercise.

Marca Bristo, Influential Advocate for the Disabled, Dies at 66
Glenn Rifkin, The New York Times - September 8, 2019

When I was starting out working at a Center for Independent Living, just starting to learn about the Disability Rights Movement, Marca Bristo was one of the first names I learned, and the first personal story I heard about.

Banana slicers and pre-peeled oranges: “useless” products can help people with disabilities
s. e. smith, Vox.com - September 20, 2019

One of the most useless stages almost every disabled person goes through is judging ourselves lazy for using even the simplest conveniences, helpers, and shortcuts to make our lives easier. It’s so wrongheaded, so wasteful, and so, so common. But it doesn’t come naturally. We learn it from the blithely judgmental attitudes of the society around us.

Will You Still Love Pete, tomorrow …
Rebecca Cokley, Medium - September 23, 2019

I have watched a lot of reaction videos where YouTubers watch and react to “Game Of Thrones.” They all love Tyrion. Most reactors’ admiration for the character, and for Peter Dinklage, seems deep and nuanced, and neither condescending nor sentimental. So I am cautiously optimistic that Dinklage and his character Tyrion really have broken some ground that won’t be covered up again.

"Once More, With Feeling"

Picture of an old TV set with four disability symbols on the screen

Spoiler alert, and while we’re at it, nerd alert …

This post is mainly a bit of self-indulgent fun.

A little over four years ago, I posted a comparison between two ways of parenting kids with disabilities, and Joyce and Giles’ approaches to “parenting” a vampire slayer on the TV show Buffy The Vampire Slayer.

Just recently, I re-watched one of my favorite “Buffy” episodes, “Once More, With Feeling,” which…

(SPOILER!, SPOILER!, SPOILER!)

… is a musical episode in which the main characters are under an enchantment that makes them involuntarily sing about the many difficult secrets they have been keeping from each other.

The songs sampled below are about several things, some of which have nothing at all to do with disability, even by analogy. But my “disability thinking” radar kept on pinging, so I thought I’d share. If you haven’t seen the show, read on or don’t, it’s up to you. But really this is going to be best for readers who are are familiar with Buffy The Vampire Slayer and have seen “Once More, With Feeling.” So …

(SPOILER!, SPOILER!, SPOILER!)

Depression

In the episode’s opening song, Buffy essentially sings about depression:

Every single night, the same arrangement,
I go out and fight the fight.
Still I always feel this strange estrangement,
Nothing here is real, nothing here is right.

I don’t want to be
Going through the motions,
Losing all my drive.
I can’t even see
If this is really me
And I just want to be … alive!

Later the story, what Buffy is experiencing gets even more clear. And what I especially like is that her song includes how part of depression is having to cope with how others react to it, and how we end up worrying about that while we’re coping with our own emotions:

I touch the fire and it freezes me.
I look into it and it’s black.
Why can’t I feel?
My skin should crack and peel!
I want the fire back!

So one by one, they turn from me,
I guess my friends can’t face the cold.
But why I froze, not one among them knows.
And never can be told.

And near the end of the story, Buffy lays it all out and shares how she’s really been feeling, whether her friends can handle it or not:

Life’s a show, and we all play a part.
And when the music starts.
We open up our hearts.

Where there’s life, there’s hope.
Every day’s a gift.
Wishes can come true.
Whistle while you work.
So hard. All day.

Give me something to sing about!
I need something to sing about!

Still my friends don’t know why I ignore
The million things or more
I should be dancing for.

All the joy life sends.
Family and friends.
All the twists and bends.
Knowing that it ends.
Well, that depends …

Unexpected Love

Tara’s love song for Willow has a layer of darkness, but the first part of it speaks beautifully about finding love and kinship when you thought you might never find either. This is something people with disabilities often experience, especially those of us who grew up with disabilities. Internalized ableism is powerful:

I lived my life in shadow, never the sun on my face.
It didn’t seem so sad though, I figured that was my place.
Now I’m bathed in light. Something just isn’t right.

I’m under your spell.
How else could it be, anyone would notice me?
It’s magic, I can tell.
How you set me free, brought me out so easily.

I saw a world enchanted, spirits and charms in the air.
I always took for granted, I was the only one there.
But your power shone, brighter than any I’ve known.

Standing In The Way

Giles, who is Buffy’s “Watcher,” her trainer and teacher, has over several seasons also become Buffy’s surrogate father. In his song, he worries that his deep desire to smooth her very difficult path has caused him to hinder her full maturity and independence. It’s something I know my parents struggled with at times. And I suspect a lot of parents of kids with disabilities will find Giles’ feelings familiar:

You’re not ready for the world outside.
You keep pretending, but you just can’t hide.
I know that I said that I’d be standing by your side,
But I…

I wish I could say the right words to lead you through this land,
Wish I could play the father, and take you by the hand.
Wish I could stay … but now I understand
I’m standing in the way.

I wish I could lay your arms down, and let you rest at last.
Wish I could slay your demons, but now that time has passed.
Wish I could stay … your stalwart standing-fast,
But I’m standing in the way.
I’m just standing in the way.

So I’m curious … what pop cultural artifacts resonate for other disabled people? Which TV shows, movies, or songs give you insight into the disability experience or reflect how you feel about it? Share if you like in the comments below.

Click here for all the lyrics to “Once More, With Feeling

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”

“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 life 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. Allies are important!

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.