3 Weekly Disability Reads

Every Sunday I post links to three things about disability that I read, heard, or viewed over the previous week, with some notes on why I found them interesting and worth sharing.

December 7-13, 2020:

1. Calling for Home Care
New York Caring Majority - December 2020

This is the rare disability advocacy video that successfully blends often competing priorities and impulses. It highlights both the struggles of underpaid and under-recognized home care workers, and the people they serve. Both the care givers and care users have a voice and they support each other, instead of just one group speaking on behalf of the other, or in some sort of passive conflict for focus. And the video itself invokes the viewer’s emotions and dramatizes the stakes, without appealing to pity.

2. Rebecca Lamorte’s Subway Accident Launched Her Political Career
Rebecca Lamorte, Teen Vogue - December 7, 2020

Over the last few years, Teen Vogue has been giving a lot of space and quality writing to disabled people and disability issues. This piece is a great example. The writer’s story is broadly relatable, and the message about disability is right on target. Again, you feel something for Rebecca’s situation. Yet, you’re left not with a useless sadness, but with a better understanding of what actually makes life unnecessarily hard for people with disabilities. The article also demonstrates the direct connection between disability and politics. It’s a connection disability activists are already familiar with, but which can still feel radical to the casual observer. There can’t be too many stories like this.

3. Why autism training for police isn’t enough
Elissa Ball & Jaclyn Jeffrey-Wilensky, Spectrum - November 26, 2020

Debates over what to actually do about police violence against disabled people – especially autistic people and people of color – usually involve simple binary conflict. On one side are advocates who promote “police training” as a simple, straightforward answer to what are often viewed as tragic misunderstandings. On the other side are those who view “more training” as worse than useless – as misleading diversions from the real problem, which is the police profession’s core hostility to people of color and anyone perceived to be even slightly strange or threatening. This article won’t satisfy anyone. But at least it gives due consideration to many angles on the issue, with a focus on what might actually be done that would be actually worth doing.

3 Weekly Disability Reads

Every Sunday I will be posting links to three things about disability that I read, heard, or viewed over the previous week, with some notes of my own added.

Week of November 29 to December 6, 2020:

1. If You Are Going to Talk About Neurodiversity, Get It Right
EJ Willingham, Divergent by EJ Willingham - December 4, 2020

It’s good to see the most common arguments against “neurodiversity” dealt with in detail, instead of just being condemned. I’m also on the lookout for good explorations of the other ways that parents of kids with disabilities end up ignoring or opposing disabled adults. It’s not just about different understandings of autism, although that’s probably where the conflict is most intense. There are other things going on in parents’ minds and emotions ... and in disabled adults’ minds and emotions too … about all kinds of disabilities and disability issues. Since we should be tighter allies than we are, it’s a problem well worth deep thought and discussion.

2. Dongle Or No Dongle?
Tourettes Hero - November 1, 2020

This is a particularly effective exploration of what advocate Liz Jackson calls “Disability Dongles” ... i.e. cool looking gadgets that are supposed to help disabled people but really don’t. This article in particular provides some essential advice for anyone with an idea for a new disability device or product. It mostly boils down to making sure actual disabled people are involved. It’s no guarantee, but it’s a good rule of thumb for any disability venture.

3. The Crown's learning disability storyline highlights painful lack of progress
Nicola Clark, The Guardian - November 26, 2020

I thought knew a lot about the Windsors, but in this season of Netflix’s “The Crown,” I was frankly astonished to see the story of several members of the Royal Family’s in-laws, (the Bowes-Lyons), who were intellectually / developmentally disabled – or as they are termed in the UK, “learning disabled.” Here I think it’s actually kind of an advantage that “The Crown” is understood to be somewhat to very factionalized. Whether or not anyone in the Royal Family was ever actually shocked and appalled by Nerissa and Katherine being stuck in squalid institutions for their entire lives, as they apparently really were, it’s helpful to witness the Princess Margaret “character” being so outraged about it. What hit me hardest and in the best way was when Margaret’s mother, Queen Mary said, “It’s complicated,” and Margaret replied, “No, it’s not! It’s wicked, and it’s cold-hearted, and it’s cruel!” To me, this is the answer to every rationalization of outdated or inhumane approaches to disability policy and services. People are always saying, “It’s complicated,” and we keep saying, “No, it’s not!”

Monthly Disability Reading List - October 2019

The three best things about disability I read last month …

Lavender Bath and Body Works hand sanitizer is my secret weapon for getting around
Kelly Dawson, Vox.com - October 22, 2019

A fascinating way of exploring coming of age with a disability, and some of the gritty physical barriers and interactions disabled people have to live with every day. It’s also a remarkably honest description of the downside of growing up with disabilities in a supportive, but sheltered environment that can be shattered in adulthood.

10 Disability Policy Questions Every Presidential Candidate Should Answer
Rebecca Coakley, Center for American Progress - October 15, 2019

This article ably answers the question, “What disability issues should we pay attention to in the 2020 Election?” It could also serve a template for candidates who want to build disability policy platforms.

What Ableism Cannot Have
Kathleen Downes, The Squeaky Wheelchair - October 4, 2019

A personal, moving, and ultimately optimistic take on what ableism is and what it does to disabled people.

Because I’m a Grown-ass Man
Mike Ervin, Smart Ass Cripple - October 22, 2019

As usual, “Smart Ass Cripple” gets to the heart of things we mostly already know, but sometimes have a hard time expressing. In this case, it’s why people with disabilities on the whole don’t like being “taken care of” in nursing homes and other “facilities.” It’s pretty simple really.

My Disabled Body Isn’t a ‘Burden.’ Inaccessibility Is
Aryanna Falkner, Healthline - September 23, 2019

Another excellent exploration of ableism, accessibility, and “accommodations” … and the informal, cultural and emotional barriers disabled people face, even when formal accommodations are technically available.

Things Disability Activists Shouldn’t Do

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

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"

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:

Opening number of the famous musical episode

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:

Sung Buffy, Spike, Sweet, Giles, Xander, Anya, Tara, Willow

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:

DISCLAIMER: NO COPYRIGHT INFRINGEMENT INTENDED!!! I don't own anything. Life's a show and we all play a part And when the music starts, We open up our hearts It's all right if some things come out wrong. We'll sing a happy song And you can sing along. Where's there's life, There's hope.

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:

Sung by Tara

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:

Sung by Giles

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?”

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!