What's The Problem?

Last week, the President of RespectAbility, a disability rights organization currently focused on disability issues in the U.S. elections, posted this on her Facebook page:

It’s cliche I know, but my first response, literally, was to say “What the fuck?!” … under my breath because I was sitting in a public place when I read it. The second thing I said was, “Oh, no, no, no!” because this wasn’t the first time she had said or done something racist, while trying to make a point about something else.

Later that day, she deleted the post, but if you don’t think better of an offensive Facebook post within a half an hour or so, deleting it tends to do more harm than good. Instead of saying, “Wow, did that come out wrong, sorry about that!” she went into defense mode. It was definitely going to be a thing, and it deserved to be.

The next day, she was quoted in a CNN article about Hillary Clinton’s recent speech on disability policy, and basically reiterated what she’d said in her Facebook post, that white people who care about disabled people are going to be key to Clinton’s election. I don’t know whether she said this to the reporter before or after her Facebook post, but the effect was a kind of “sorry / not sorry.” She deleted the post, then said basically the same thing in a news article.

On Sunday morning, I was one of a long list of people who received an emailed apology from Ms. Mizrahi. As it turned out, on Friday she had issued the following public apology on the RespectAbility website:

 

This was, at that point, “the least she could do.” ***

So, what, exactly, is the problem?

I’m not highly qualified to say. I am a white man. I am disabled, and have been all of my life, but I am also privileged … socially, educationally, and, most of the time, economically. On top of that, despite over 20 years in the disability rights movement, and a lifetime being a left-leaning liberal, my understanding of how race and disability relate to each other is pretty thin. That right there is, I think, a clue about the nature of the problem.

Still, you don’t need a doctorate in sociology to spot the most obvious offense in the post … the implication that white people’s votes matter more than other peoples’ votes. And when challenged on this, Mizrahi doubled down by repeating the other side of that coin … that Black people and other people of color can be counted on to vote Democratic, and what’s really important is that white Trump supporters who have disabled family or friends might cross over and vote for Hillary Clinton because of Trump’s disrespect of disabled people.

Whether or not these are sound predictions and valid strategies, (more on that later), can we at least agree that it’s gross and unhelpful to underscore and celebrate taking minority voters for granted, while pining for and prizing the votes of white racists?

But this is only the most overt problem. It also reveals and reinforces deeper issues that transcend one person or incident.

There is a history of racism in the disability rights movement. On one level, this is not surprising or even especially scandalous, since the disability rights movement in the United States is rooted in American culture, which includes both intentional and habitual racism. We like to think that disability rights is a special and virtuous movement, and it is, but it’s not so special that it is immune from all prejudices.

In fact, there is a unique and insidious kind of racism in the disability community, even to this day. Specifically:

1. Until very, very recently, the projected, carefully crafted face of the movement has been overwhelmingly white. The word “erasure” can sound like jargon to the average observer, but it really means something. When you don’t see people like you in popular culture, in school, in workplaces, or in a movement you care about and want to be a part of, it can be a barrier as solid as stairs to a wheelchair user. And when someone in the movement says something that seems to validate your lesser status and invisibility, it really is like a slap in the face. You don’t have to be “over sensitive” or “PC” to feel the pain.

2. This “whiteness” of the disability rights movement also relates to one of the more questionable aspirations of the movement ... a quest to make disability rights some kind of crossover social justice movement, easy to support and palatable even to conservatives, bigots, and people who disapprove of protest and diversity. It’s tempting to make disability somehow “post racial,” and a stand-alone issue, but since disability and other minority communities overlap, this doesn’t even make any sense. Nevertheless, I think that in a lot of ways we keep trying to pull this off, sometimes deliberately, often without realizing that’s what we are doing.

3. For what it’s worth, in addition to being an odious goal, I don’t think there’s much to it. There is little evidence that apolitical people, conservatives, or racists suddenly learn to love and understand social justice because they or a member of their families have a disability. They might engage in necessary self-advocacy, and that’s not nothing, but when it’s time for systemic activism, solidarity, and yes … voting … people who aren’t into those things to begin with usually find other things they need to be doing, regardless of their personal experiences of disability. And political ideology usually wins out over practical experience in the voting booth, too, even among disabled voters. That may change someday. It may be starting to change this year. But it’s definitely too early to cut allies lose because we think we’ve assembled a new voting bloc.

So, in addition to Mizrahi’s wording and phrasing being offensive on its face, it revives this old, offensive, and highly questionable strategy, which has had a long and, frankly, embarrassing history in the disability community.

Finally, this seems to relate also to a wider strategy in some liberal and Democratic Party circles … the never-ending effort to “win back” the white racists and social conservatives who left the party when it committed to civil rights in the 1960s and ‘70s. It’s not that anyone literally says it, but prioritizing and messaging speak loudly. People of color are in the bag for “us” and our Holy Grail is to find just the right “wedge issues” to persuade white racists, who fundamentally despise us and everything we stand for. As the saying goes, good luck with that.

It’s one thing to understand your enemy, find a little common ground, and chip away at their periphery. It’s quite another to treat your friends like ho-hum garbage and beg your enemies for approval that never comes. It’s offensive and pathetic … and it doesn’t work.

*** Note: Ms. Mizrahi posted a longer apology after most of this commentary was already written. While there is more there than her one-line apology from last Friday, it doesn’t alter any of the points I have made here. I hope it’s clear that the problem I’m addressing isn’t, in fact, only about one person or a single “mistake,” but rather a case of backsliding into an old, divisive formulation that threatens the small but precious progress we have made to make our movement truly inclusive.

Petition

Cartoon style drawing of a petition

I’ve been too busy today to write a longer post, so it’s a good opportunity to share a worthwhile petition. It’s asking the President, (I’m not sure why, but whatever), and the U.S. Patent Office to cancel the trademarking of the term “Invisible Disabilities,” which a nonprofit organization got for itself and is actively stopping anyone else from using.

As this Daily Dot article points out … and should be obvious anyway … “invisible disabilities” is a generic term widely used for a very long time to categorize various disabilities that aren’t apparent to others. This organization, the Invisible Disabilities Association, is basically meant to address the concerns of people with invisible disabilities, so they’re more or less on topic. The problem is that they are trying to claim ownership of a widely used descriptive term that is also viewed by many people to be an identity … something like an ethnicity. Either way, it’s ludicrous and ungenerous, and they certainly didn’t creatively come up with the term, so I have no idea how or why the Patent Office allowed the trademark to go through.

At some later date I might have more to say about the organization itself, which also happens to have a rhetorical style that I find a bit creepy and off-putting. I there may be structural and philosophical reasons for that, but I want to explore the role sentimentality in disability discourse. Is the sweetness and cheerleading approach wrong, or is it just a different cultural and emotional perspective on disability that I personally don’t like?

Three Threats: 2. Police Violence

"Danger" sign, white letters inside a broad red oval, surrounded by a rectangle of black

From a July 6, 2016 blog post:

“Over the next few days, I plan on writing a series of posts about what I believe to be three of the most dangerous and imminent threats to disabled people in America today. By "threats" I don't mean garden-variety injustices, or everyday ableism ... even though some days they seem to eat away at our souls. I'm talking about specific measures or trends that threaten our actual survival. And by "survival," I mean our economic viability, our physical and psychological independence, and our lives and safety.”

On July 11, I tried to describe and explain Populist Backlash. I planned to focus on "Re-Institutionalization" as the second of the Three Threats. However, while I am still quite worried that disability policy could, in the next few years, veer back towards a new segregation, instead I'm going to talk about a more imminent threat: the risk of injury or death in encounters with law enforcement.

***

I was going to start with a carefully-assembled rundown of recent events to prove that this is actually an active threat, and not just an over-publicized series of unfortunate mishaps. Instead, I suggest simply reading the two articles linked below. The second one is also mentioned and linked in the first. Both together provide what feels like a complete overview of how police violence specifically affects people with disabilities, in ways that often combine with racial bias, sexism, hobophobia, and transphobia, but are also distinguishable from them.

Four Essays by People of Color on Disability and Policing
David Perry, How Did We Get Into This Mess? - August 2, 2016

Charles Kinsey's Story Is About Race. It's Also About Ableism
Finn Gardiner, Manuel Díaz , Lydia X. Z. Brown, Sojourners - July 27, 2016

These incidents are horrifying and almost always morally infuriating as well. It's terrible when disabled people are hurt or killed by police, and it's an outrage that there is almost always a mix of implicit biases, ignorance of basic facts about disabilities, and unjustified fear involved. But, does this really qualify as one of the top three threats disabled people face today? I think it does, and here is a rough sketch of why I do:

- Disabled people have probably always been at unique and distinct risk of police violence. Armed police expect people to look and behave in certain ways, and disabled people, by definition, often can’t conform, even when we want to. Deaf people may not respond to verbal commands. Autistic people may recoil from unexpected engagement or challenge. Physically disabled people can look or sound drunk or drugged. The risk has always been there. It just hasn’t been as recognized as it should be, by police or by disabled people themselves.

- An apparent increase in incidents, and more immediate publicity about them, makes us more aware of the possibility that catastrophic things could happen to us, specifically in encounters with police. This further erodes any sense of safety and acceptance we may have or think we have as disabled people. People who are disabled and black, or gay, or trans, or any combination of other oppressed identities may be more tuned into this danger. Many of us, though, live more sheltered, privileged lives in which our disabilities seem on most days to be relatively minor social inconveniences. For most of my life, it would have never occurred to me, a white, straight male, that police might one day drastically misunderstand me, leading to tragic consequences. Seeing this happen more often, and seeing how nonsensical it is when it does happen, has stripped away a good deal of my unconscious sense of invulnerability. I have always expected condescension. I have only recently begun to worry about my physical safety.

- There may still not be a high probability that any given disabled person will be hurt or killed by police. But any probability is too much, when the consequences are so dire.

- I say "probably," but I don't think we really know. It's a crisis if you know of a threat but have no real idea of it's size or likelihood. We know the consequences. We have some ideas about the causes. But that is about all we know, and that by itself is terrifying.

- Each new incident adds to a sense of danger that probably makes more actual incidents more likely to happen. Everyone is on edge, which does not help.

The main debate about this within the disability community is whether "better police training" can help, or whether it's a comforting but ineffective distraction from broader changes in policing. I think which is the right answer matters less than acknowledging that it is a serious question.

It is tempting, even seductive, to offer up an annual sensitivity training with PowerPoint handouts and call it a problem solved. If mandatory training can reduce the number of people hurt or killed, I'm all for it. Still, we can't separate out this slice of the wider problem of police violence and deem it somehow lesser, or easier to solve ... because it probably isn't. It's not only a serious threat to disabled people today, it's a long term one.

Sagamihara

Illustration of Japanese flag with white wheelchair symbol in the middle of the red dot, red drop of blood below it, and caption reading: Mourning those killed at Tsukui Yamayuri En. End hate against disabled people"

I want to write about the intentional murder, by planned, methodical stabbing, of 19 disabled people, in a “facility” in Sagamihara, Japan, by a former worker at that facility. I want to write about it, but I don’t want to just repeat everything so many others in the disability community have already said. So, here is a list of links to the articles, essays, and blog posts I have read so far:

#CripTheVote: Violence & Disability
Alice Wong, Storify - July 25, 2016

Note: This Twitter chat happened before the incident in Japan, but it couldn’t be more relevant to it.

Ableism is not “bad words.” It’s violence
Lydia Brown, Autistic Hoya - July 25, 2016

Ableism is Deadly: Mass Murder in Japan
William Peace, Bad Cripple - July 26, 2016

Violence, Disability, and the Lessons of Sagamihara
David Perry, Pacific Standard - July 26, 2016

Japan, Hate and 12 days
Dave Hingsburger, Of Battered Aspect - July 26, 2016

This Is What Disability Erasure Looks Like
Emily Willingham, Forbes - July 27, 2016

Ableism, Violence, and Sagamihara
Alice Wong, Disability Visibility Project - July 27, 2016

I will add this …

I think one reason why neither news media nor social media really seemed to know what to do with this massacre is that there's a certain idea people have about ableism, or disability-based prejudice.

It’s the idea that ableism is somehow a less severe form of prejudice that comes more from ignorance, unfamiliarity, and bad social habits than from real fear, superiority, or hate. It's a comforting idea, because it suggests that there is a simple solution to ableism … not easy to accomplish maybe, but easy to imagine. It’s the idea that ableism can be fixed by better, more refined etiquette.

Certainly, education and awareness can help with the most common and merely annoying aspects of ableism. You might be able to get some people to stop saying unintentionally upsetting things about disabled people. Most people disapprove of being mean to disabled people. That’s why Donald Trump’s juvenile mockery of a disabled reporter’s unusual voice, appearance, and movements is such a political winner for Democrats. However, the roots of ableism are much deeper and insidious than personal insensitivity, and more harmful by far than hurting disabled peoples’ feelings. Ableism is based, in part, on a belief that disabled people don’t belong. We are defective. We are untidy. We get in the way. We demand more than our share. We make people sad.

Even when we are praised, it’s usually because we have managed to overcome these supposedly inherent flaws to become less disabled, less what we are, and more what people are supposed to be like. That leaves the underlying premise unquestioned.

As several of the writers linked above note, terrible acts like what happened in Japan this week can’t be dealt with straightforwardly because most people hold some of the very same beliefs that motivated this man, even if they don’t act on them as he did. The man was apparently regarded as “insane” and briefly hospitalized, not because he believed as he did, but because the social norms that usually keep these views in check were not working with him. He is now easily dismissed as an anomaly ... horrifying, but unique. This allows his fundamental view of disability to go mostly unexamined, and allows everyone else to view his actions as having no broader meaning, no message other than “Dear gracious me!”

His actions do have broader meaning. His beliefs are quite common, even though for most people they are diluted and fleeting. I am not worried that attacks like this will start happening all over the world now … though that is a possibility. I am more worried that the beliefs about disability that motivated them will continue to generate less spectacular acts that are, in aggregate, even more harmful and far more commonplace.

We all need to realize that ableism is just as bad as every other ‘-ism’. Ableism isn’t different, or special, or only about lack of courtesy. As William Peace says in his blog post linked above says, "Ableism is deadly." It is deadly even when it doesn’t actually kill.

*Note: I got the illustration above from the Twitter account of Carly Findlay @carlyfindlay. I don't know where she got it, but it seemed massively appropriate.

Three Threats: 1. Populist Backlash

Danger sign, white block letters inside horizontal red oval, surrounded by black rectangular background

From my July 6, 2016 blog post:

“Over the next few days, I plan on writing a series of posts about what I believe to be three of the most dangerous and imminent threats to disabled people in America today. By "threats" I don't mean garden-variety injustices, or everyday ableism ... even though some days they seem to eat away at our souls. I'm talking about specific measures or trends that threaten our actual survival. And by "survival," I mean our economic viability, our physical and psychological independence, and our lives and safety.”

***

Let's start with Populist Backlash.

In this particular election year, it seems right to start with Populist Backlash. Since the term is made up of two distinct words, I’ll start by trying to define them.

Stock photo of a middle aged white bald man with beard and mustache, looking very angry, pointing an accusing finger at the viewer

“Backlash” is a reaction against recent social changes. It is inherently conservative, (Keep things the way they are!), and often reactionary, (Go back to the way things were!). Some people join in backlash because they have always opposed social change. Others get revved up when they feel that social change has “gone too far,” or when social change previously thought to be essentially harmless suddenly seems to threaten the majority’s status and equilibrium.

The word “Populist” implies a movement coming from the “lower” levels of society, rather than elites. Populism can be positive or negative, but in the American political context the term carries a negative connotation, because so much American “populism” has included explicit racism, anti-semitism, and other kinds of scapegoating … blaming other low-status groups for your problems instead of the systems and leaders who are actually responsible.

So, “Populist Backlash” is a movement against resented social change, by people who are themselves of relatively low status, who suffer real or perceived losses of status and privilege, and who vent their frustrations on other low-status or minority groups. It’s important to note, too, that while Populist Backlash doesn’t come from elites, it is very often co-opted and used by elites for their own purposes.

How does this relate to disabled people?

Disabled people are more visible, accommodated, and assertive in society than they were decades ago. Fewer of us live in institutions. Still too many do, but far fewer than used to. You see disabled people more often in everyday life, where we used to be almost invisible. Disability issues still don't get the attention they should, but accessibility, inclusion, and simple non-discrimination are at least recognized and more or less permanent priorities. Disabled people have over the last 30-40 years gone from virtual nonentities in society, dealt with only privately by their families and physicians, to permanent, named members of the broader community. That is a big change, even though we sometimes forget it. And how we view ourselves from the inside is different from how others see us.

From the outside, it can appear that disabled people are entitled to many benefits, privileges, and social sympathies that other underprivileged people can’t seem to get for themselves. People are just minimally "aware" enough to know that there are now more laws and programs designed to meet the specific needs of disabled people. Meanwhile there are fewer such arrangements than there used to be to help people who have other kinds of problems, like under-employment, low income, and discrimination. While disabled people have these problems, too, we at least have programs that are supposed to help us with those things. Non-disabled people mostly don't. They used to, but remember that in the United States, generic "welfare" has been mostly dismantled, shattered into dozens of tiny, narrowly targeted programs that are hard to qualify for and full of holes.

We disabled people know, of course, that even our own targeted programs look far better on paper than they do in real life. Our civil rights laws lack practical teeth. Benefits are hard to get and even harder to maintain with any assurance. The better service models we've developed are almost all vastly under-funded and, therefore, minimally and randomly implemented. But this doesn't matter to people who don't know any of this. To them, it looks like we get everything and they get nothing, even though they feel like they have just as many problems and barriers to deal with, if not more. We even get our own damned parking spaces!

Frustration about these supposedly unearned advantages, coupled with the dark allure of disobeying the dictates of “Political Correctness” can lead people to be shockingly nasty and abusive towards people with disabilities. Actually fighting for better policies to address inequality requires coherent, carefully-tended ideologies and lots of wonky knowledge. Lashing out at your "disabled" neighbor who gets a monthly government check for "doing nothing" is easy. Especially if they look and talk weird. Especially when they, (we), do nothing but complain about not having any power or support.

And now, we have savvy politicians telling people that lashing out in this way isn't impolite. It's not gross or hateful. No! It's honest, brave, admirably non-conformist!

So what? This kind of naked hatefulness against disabled people isn't all that common. Disabled people are far from the favorite scapegoat for Populist Backlash. Immigrants, black people, LGBTQ people, and women seem to share that dubious honor. Is this really a big enough problem to be a danger, not just an annoyance or personal trauma? For one thing, lots of disabled people are also black, gay, immigrants, and / or women. So, for many of us, ableism is just one of a half dozen or more active angles of attack we experience every single day. Ableism may not be the worst, but it doesn't have to be.

The other problem is that this close, personal resentment and unleashing of anger can very quickly lead to harmful policies that would affect far more than our feelings. Scapegoating disabled people, even only occasionally, can jump in a second from purely social and rhetorical, to the very concrete. Especially during an election year ... especially THIS election year ... we need to watch out for hate becoming proposals. We need to be wary of cuts to disability benefits or narrowing of eligibility. We need to be on the lookout for attempts to make the ADA even weaker than it already is. We need to worry that giving people permission to use unthinkable language about disability will help unleash unthinkable policies that will harm disabled people.

This happened in the United Kingdom when budget cuts targeted to disabled people were made politically feasible, even politically attractive, partly by amped-up anger at “benefits scroungers.” As a bonus, political validation of the idea may have, in turn, fueled more hate, setting up a frightening, destructive cycle. It hasn't really happened here yet, but it could.

Where does this backlash come from, and why?

Again, the Populist Backlash I am talking about generally comes from poor and working class people, not primarily from so-called elites. Certain elites will harness it, and they are usually the ones to channel resentment into action, but when they do, they are still mainly relying on non-elite sentiment. Most elites are too polite, or too politic, to partake directly.

Although Populist Backlash against disabled people is almost completely based on misinformation and prejudice, it is weaponized by actual suffering, both emotional and material. As already noted, non-elites feel screwed, and in many ways they are. The problem is that it's easier, somehow, to blame other screwed people who look, speak, and act differently, and who are close at hand, than to blame murky, distant corporations, politicians, and obscure policy structures.

A lot of things feed into Populist Backlash, including basic ableism, but it also relies on the idea of scarcity. It's the idea ... the unquestioned assumption really ... that all good things in society are in short supply. When one group "gets," others necessarily "lose." If disabled people are better off, someone else may be suffering. Maybe it's me.

At the moment, Populist Backlash is more of a warning sign than a danger. But we should absolutely view it as a very serious warning sign of a very real danger, not just to our identity or peace of mind, but to our actual lives.

Next in this series: Re-Institutionalization.

Three Threats To Disabled People Today

Danger sign, white block letters inside horizontal red oval, surrounded by black rectangular background

Over the next few days, I plan on writing a series of posts about what I believe to be three of the most dangerous and imminent threats to disabled people in America today.

By "threats" I don't mean garden-variety injustices or everyday ableism ... even though some days they seem to eat away at our very souls. I am referring instead to trends that threaten our actual survival. And by "survival," I mean our economic viability, our physical and psychological independence, or our lives and safety.

There are more just three serious threats of this caliber, but these are the three I've decided to write about first. I can already think of two or three more I could add, and I might do that in another series in a few weeks. For now, here are the three "dangerous and imminent threats" I'm going to look at, starting in a few days:

1. Populist Backlash

2. Re-Institutionalization

3. Legalization of Assisted Suicide

Stay tuned, and feel free to join in with comments.

Growth Attenuation

Photo of a man with his forehead planted onto an open laptop computer's keyboard

Here is the article that started it all:

Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?
Genevieve Field, New York Times Magazine - March 22, 2016

Here are two great responses to it, in tweet form:

No, @NYTmag, #AbleistViolence is NOT ok!
Alice Wong, Storify - March 23, 2016

Language, Framing, and Perspective in Reporting on Disability
Kayla Whaley, Storify - March 23, 2016

This New York Times Magazine article has occupied my thoughts for most of the last few days. It purports to examine the ethics of parents of significantly disabled children choosing a medical "treatment" that stops their growth, both in size and in sexual maturity. In effect, it renders them physically permanent children. If there are people who don't immediately get why this is wrong and extremely creepy, nothing I say is going to make any difference. Plus, others have done a great job of responding already.

Still, I've got this blog, so ...

It begins and ends with consent. As described, this "treatment" is only used on children who are intellectually disabled and don't communicate. In other words, they can't give consent to such drastic procedures, both because of their age and, more significantly, their disability.

Anticipating an objection: It's not the same as parents giving consent for a child to have life-saving heart surgery. This "treatment" is in no way necessary to a disabled child's better health, and is not even close to being "life saving." At best it is exactly the kind of optional but consequential procedure that would normally absolutely require informed consent ... but in these cases, the children can't give consent and aren't even asked.

In fact, it's hard to imagine parents daring to ask a fully conscious, communicating child whether they would agree to have their growth stopped and adulthood cancelled, to make them easier to care for. But why not? If it's all about physical convenience, what difference does their intellect make? I'd never say never, but I think even supporters of this procedure would shudder to look an 8 year old son or daughter in the eye and say, "Look, we really think it's for the best if you just don't grow up. You'll be a lot easier to take care of if you stay small and never experience puberty. Okay?" It's too horrific to contemplate, but it's the only acceptable situation I can think of in which to discuss this sort of thing. The only reason any parents even consider this is that their children's cognitive and communication disabilities spare parents the obligation of asking them. But that's exactly why it's unthinkable.

Let's look at this another way. Here you have what are reputed to be the most "severely" disabled children living. Their parents decide that to make caring for them easier, they're going to mess with the one thing they can still do more or less like other people, grow and develop into adults, in body if not entirely in intellect or conventional maturity. They've got one thing that makes them like other people, and you take that away from them, too.

A few more thoughts:

How much help is this "treatment" anyway? It makes a child easier to move around, but that seems like a pretty small benefit to get for radically and permanently altering your child's body chemistry and development. It would be less traumatic and just as useful to bolt sturdy grab handles onto their sides, so they can be carried like a briefcase.

Hysterectomies too? Really? Do we detect a bit of weird sexism thrown into the mix? Are they castrating boys as well? I guess as long as you're tinkering, you might as well mess around with their sexuality, too, because monthly periods are unpleasant and erections are ... what? awkward and embarrassing?

And what's the deal with calling these kids "Pillow Angels?" Nobody explicitly says they do this thing specifically in order to keep their son or daughter a perpetually cuddly child. But, with all the sentimentalizing and infantilizing language they use, it seems like in at least some families there are bizarre ideas, obsessions, and mythologies of childhood in play. Maybe the parents are just freaked out at the thought of providing all this intimate care to a big, hairy guy or a fully developed woman's body. Nothing cute or cuddly about that, right?

Why don't these parents, doctors, and "ethicists" fight this hard and tenaciously for better support services, for families and for adults with significant disabilities? I get that activism doesn't come naturally to everyone, but is turning your child into a permanent baby doll really better than advocating for better funding or working to pass better long term care legislation? Are we really going to say that massive body alteration is an acceptable substitute for decent disability services and social justice?

The most important thing missing from the New York Times Magazine article is that for disabled people it is a personal attack on our personhood, even when it's not happening to us personally. This point is critical, because counter-critics will say that vocal disability activists can't speak to the issue because our disabilities aren't like these kids' disabilities. First of all, there are many of us who are as physically disabled as them, who can really speak to this quite directly. Plus, we have all experienced at some point in our lives the horror of feeling that control our lives and bodies has been deliberately taken out of our hands, by others, precisely because we are disabled. And the "others" doing the taking are almost always either experts with medical degrees that outrank us, or loved ones who, after all, only want the best for us. You simply can't discuss this dispassionately and insist it's purely practical or an interesting head-scratching moral dilemma. The emotional, even existential component is essential.

About all we get in the article is that disability activists are shaming these parents on social media. So instead of having a valid point of view based on personal experience, we are just another gang of cranky online social justice warriors who are making parents feel bad.

We are talking here about using unnecessary medical procedures to make social policy, with dire and to some extent unknown consequences for real human beings ... without their consent.

Yes, it all comes back to consent. Every other argument is moot. You can't do this to people ... any people ... without their informed consent. If you can't get consent from the person most affected, then don't do it. End of discussion.

Unless, of course, we decide that severely disabled kids who don't communicate aren't actually people. Maybe they're something else? If that's the case, then it's all good! Is that, in fact, what we're saying? Is that what we want?

On a more personal note:

I don't get truly angry much. When I read about some injustice or bad policy affecting disabled people, my anger usually dissipates pretty fast as I think about all the arguments and counterarguments, put myself in other peoples' shoes, play Devil's Advocate, etc. I intellectualize things, probably too much. In this case, I started out kind of bemused, ("Wait, what???), and the more I thought about it the angrier I got. That means something.

Day Of Mourning

Single lit candle against a dark background

Disability Day of Mourning Vigil Sites
Autistic Self Advocacy Network - February 27, 2016

I decided to do something a little different this year for the Disability Day Of Mourning. I asked myself whether at any time during the 23 or so years I worked in the Independent Living Movement I knew first-hand of a disabled person who died as a direct result of some form of disability prejudice or “ableism.”

What do I mean by dying of ableism?

I don’t mean dying because of a random, unavoidable illness, injury, or accident. I don’t mean dying "naturally" from a progressive disability. I also don't even really count dying in a risky situation that the disabled person chose to put him or herself in. A certain subset of professionals tends to focus on bad "outcomes" that could be prevented, but only by imposing unacceptable restrictions and surveillance that many disabled people deliberately reject. So when a disabled person dies free and happy, I mourn, but I don't necessarily feel there's been an injustice.

No ... In keeping with the theme of the Disability Day Of Mourning, I am talking about dying due in part to something preventable, something that didn’t have to be the way it was, a situation the disabled person tried to change, and based on prejudiced beliefs about disability itself.

I can think of at least two disabled people I knew through my ILC work who I think probably died because of systemic failures influenced by systemic or personal ableism. Neither situation was the kind where one could bring legal action, but I definitely had that feeling of, "that shouldn't have happened." Also, I don't think I ever knew or worked with anyone who was deliberately murdered, but sometimes the distinction is hard to pin down in retrospect.

The Day Of Mourning is for people with disabilities deliberately killed because of their disabilities and how their murderers perceived them. I think that's a good criteria for an event like this. However, I also think it's worth remembering disabled people who died "accidentally," but sort of not ... who died not because of who they were as disabled people, but because of the way things are for disabled people.

Inspiration Without Inspiration Porn

Green highway-style road sign reading InspirationFirst read this …

Charles Roberts, America News - November 11, 2015

… and marvel at the stunning insensitivity it took for this woman to congratulate herself for doing a good deed, after “stubbornly” overruling a disabled veteran who said several times he didn’t need or want her help, and forcibly helping him anyway. It takes a lot for a news item to stun and offend me personally, but this one had me swearing aloud to my iPhone.

Now read Dominick Evans’ terrific blog post about the story:

Dominick Evans - December 16, 2015

Yes, it’s “Inspiration Porn” again. Why are we so bothered by people who are just trying to be kind? Why won’t we leave it alone?

Because it keeps happening, it’s genuinely disturbing, and people keep finding ways to make it even worse.

Still, I hate being a sourpuss. Just because I loathe sentimentality, doesn’t mean that all sentiment is wrong. Just because I don’t exist for your inspiration, doesn’t mean it’s wrong to feel inspired by whatever happens to inspire you. The alternative to Inspiration Porn isn’t gross negligence, like stepping over a disabled man choking to death in a McDonalds. There are decent, acceptable ways to be decent, kind, and helpful to disabled people.

Can you do a "good deed" for a disabled person without offending them?

Is it possible to do inspirational stories about disabled people without being smarmy and condescending?

Yes and yes!

First ask, "Can I help you?", and then respect the answer. And if the answer is "No thank you," or even just plain "NO!", don't take it personally. How each disabled person answers depends on many factors. I’m not often asked if I need help. When I am, I usually say, “No thank you, I’ve got it” because I’ve got it. Sometimes I say, “No thanks,” then pause a moment, survey my situation, and say, “Actually, yeah, that would be great, could you …?” and then I tell the person exactly how they can help. Sometimes, I say, “Yup!” right away, and hand them the whatever that I’m trying to carry while inching my way down some stairs. The point is, it’s fine to ask, I call the play, and the only really offensive thing is if you don’t listen to my answer.

What about pictorial depictions of bravery, kindness, perseverance, inspiration, like Facebook memes or YouTube videos?

Never snap a photo, never shoot a video about a disabled person without the disabled person's consent. It doesn’t matter that you admire the thing you are depicting. It doesn’t matter that you do it to make people happy or uplift them, or teach them a lesson about gratitude. What matters is the result, and if the disabled person isn't on board with the situation or being used in your little morality play, any good you think you’re doing will be undone.

Above all, make sure the disabled person has a voice in the story or scenario or whatever it is you’re focused on. If you write about an actual, named, identifiable disabled person, ask the disabled person to comment and include what they say. You’ll discover pretty quickly whether they think the situation is amazing and remarkable, or pretty standard and nothing to crow about. And that should be your guide on how to think about it, too. Follow the disability rights movement motto: "Nothing about us without us."

If you focus on a disabled person overcoming adversity, ask questions about that adversity and why it is there. Stories of individual courage and character are uplifting, but disability discrimination and hardships don't happen in a vacuum. The problems disabled people face usually come from or are made worse by the bad choices and neglect of actual people and institutions that should be challenged. Battling institutional ableism doesn’t translate so easily to cute Facebook posts that make people go, “Awww!” but that’s part of the point. And anyway, fighting discrimination IS inspiring!

Finally, remember that not every disabled person craves "going viral." Most disabled people just want to get on with life. Believe it or not, many of us strongly prefer anonymity! Most importantly, we all want to be treated as people, with three full dimensions, unique points of view, and complex feelings, not cardboard cutouts employed to symbolize abstract values, or tools to make you feel swell and become Internet-famous.

But what if I can’t follow all these conditions and still tell my story?

Simple … just don’t tell the story! Sometimes, a little restraint is the best, most uplifting gift of all.

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Return Of The "Pool Noodle?"

Photo of a child's feet in sneakers standing on a one-step platform with a while cane for the blind out in front

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."

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