Bad Ideas About Disability

Photo of a yellow diamond road sign reading BAD IDEA

I spent some time this morning in an exasperating Twitter discussion about disability terminology. A man started off angrily objecting to the #CripTheVote hashtag for being offensive, and quickly moved on to rejecting almost every common disability term ... including simply “disability” ... as out of date, offensive, negative, etc. The only thing remotely like a workable terminology he would accept was “special needs,” which made some sense since he said he was an educator. I should also point out that the man said he is hearing impaired, which gives his opinion on the subject some authentic credence.

Soon the conversation between him and about 5 other disabled folks boiled down to an absolutely ironclad, and in his view moral belief that “disability” itself doesn’t exist, since everyone has unique abilities and disabilities. I think I am paraphrasing him more or less accurately.

Both views ... about disability terms and about disability itself ... are familiar to me. Both are generally well-intentioned ideas put forward by people who sincerely believe they have a progressive understanding of disability. However, both are also, in fundamental ways, regarded as bad ideas by significant portions of the disability community.

This particular man happened to be extremely obnoxious and condescending, but in a way that is beside the point. He was being obnoxious about ideas that at least some polite and fair-minded people also sometimes advocate. The discussion has prompted me to start working on a new series of blog posts on the most prominent and influential bad ideas about disability.

I don’t mean bad behavior, intentionally offensive language, or simple ignorance. I won’t be citing “ableism” as one of those bad ideas, because it’s much too broad. I won’t include random theories tossed off by someone in the course of a freewheeling conversation. I’m talking about relatively specific, well-intentioned, carefully thought out, and widely circulated ideas about disability that are, unfortunately, bad.

And what do I mean by bad? Since I want to steer clear of categorical judgements like right or wrong, accurate or inaccurate, I’ll count a disability idea as “bad” if it meets one or more of the following criteria:

  • It makes a sizable percentage of actual disabled people angry or uncomfortable.
  • It fails to accomplish its intended purpose.
  • It tends to lead people ... intentionally or unintentionally ... towards behavior that is harmful to disabled people.

I’m not quite ready to dive in full force on this series. I plan to take my time with it. So over the next few months, my tentative plan is to explore these three bad ideas about disability:

1. Using euphemisms for disability ... (e.g., differently-abled or special needs)

2. Espousing the idea that disability doesn’t really exist.

3. Asserting that there is a limit to the amount of support and accommodation disabled people should expect from society.

If you want to nominate another bad idea about disability, along these lines, feel free to leave a note in the comments.

Modest Goals

Picture of an ice hockey goal net

“Disability Awareness.” For some it’s a blanket term covering all the aspirations disabled people have for social acceptance and having our needs accommodated. For others, it’s hopelessly vague, and in practice, meaningless. For a long time, I haven’t had much use for disability “awareness” myself, until just recently.

As disability activists have struggled to pass key legislation and defend the imperfect supports disabled people already have. Disability culture strives for full representation and a wholesale redefinition of disability. Meanwhile, I have started to feel like it might be useful to rethink the basics. We have pretty good ideas of where we want laws and institutions to be regarding disability in society, but achieving those goals seems like a tall order. Is there a more basic set of goals we can achieve on a person-to-person level? Should we aim a bit lower in the short term, and adjust our expectations with people … non-disabled and some disabled people too … who aren’t quite equipped yet to deal with the ambitiously ideal world we are working towards? If expecting people to get it all perfectly right with us is correct but unrealistic right now, what can we reasonably expect?

The more I think about it, the more convinced I am that any actual goals we have for “disability awareness” need to be modest, at least for the foreseeable future. That seems logical, if a little bit uninspired.

So what, exactly, are some modest, realistic goals? What can and should we hold people to, (even perfect strangers and disability newbies), with confidence and assertiveness, and without having to put them through a ten-part disability seminar?

1. Understand and accept that some forms of praise and sentimentality make us uncomfortable. Of course you mean it in the kindest, most positive way. Most of us like specific praise for the work we have done, or our objective accomplishments and efforts. But random praise from strangers and casual acquaintances, simply for living and functioning, usually make us feel awkward. It's a little like being gushed over by the teacher in front of the whole class. And almost none of us likes it when people talk to us with that sweet, saccharine voice normally reserved for infants and adorable pets.

2. Know that disabled people, to varying degrees, have to deal with discrimination that can be personally annoying, but also sometimes life-altering and life-threatening. We call it “ableism,” and though the word may be new to you … and maybe sounds a little contrived … it describes a real thing with real-life consequences. We don’t all experience it in the same way, or to the same degree, but all of us do experience it.

3. Recognize that disabled people are under a lot of social pressure to be cheerful and uncomplaining ... brave soldiers and inspirational examples to others. That means that reacting to disabled person’s personality and tone is more complicated than simply liking and praising disabled people who are sweet, and disliking or disapproving of disabled people who seem grouchy and dissatisfied. If we are hard to live with sometimes, we often have reason to be. And when we are unending rays of sunshine, that can sometimes hide how things really are for us.

4. Unless you are in a specific official position that explicitly requires you to determine somebody’s disability, you should just believe what people say about their disabilities. Anyone can be a liar or self-deluded, but it's particularly obnoxious for disabled people to be constantly doubted and questioned by random people for no good reason.

5. No, we haven’t fully decided what to call ourselves. At the moment, there seems to be a tie between “person with a disability,” and “disabled person.” The best thing for non-disabled people to do in most situations is accept what each of us chooses for our preferred terminology, and leave it at that.

6. If you’re non-disabled, don’t try to “educate” a disabled person about disability. It may be well-meaning, and you my well be right, but it’s presumptuous in a very personal and fundamental way to try to explain our disabilities to us. In fact, even if you are disabled yourself, be very careful and humble about “correcting” another disabled person's views about disability.

None of this is beyond an ordinary person’s ability to understand, or at least practice in everyday interactions. It doesn’t require a background in sociology. You don’t have to be politically progressive. And you don’t have to have a disability, or have a disabled person in your family. At the bottom of each of these goals is a simple thing that may require some effort and the occasional reminder, but needs little in the way of knowledge or education: Treat disabled people as people with agency, unique stories, and human perspectives of their own. And then act accordingly.

It's not too much to ask.

Disability Thought Of The Week: Disgust

Icon of a white silhouette head with a word cloud inside containing words associated with disability thinking, against a light blue background

While meeting with the U.S. Winter Paralympic Team, President Trump praised the Paralympics as “inspiring,” but “hard to watch.” Most people I have contact with feel that he meant that watching disabled athletes do their sports is painful in some way. I have also read suggestions that in context, Trump meant that since he’s so busy, it was hard for him logistically to watch the Paralympics, not that he disliked watching them.

I can’t read President Trump’s mind. Given the circumstances, I actually think these two interpretations are about equally likely to be correct.

However, I can’t help thinking that it would be thoroughly consistent with what we pretty well know about Trump if he really did mean watching disabled athletes is sad, pathetic, or gross to him. Trump strikes me as a man strongly driven by disgust … by visceral reaction against anything he perceives to be ugly, dirty, abnormal, or tainted. He seems to feel this way about immigrants, … especially brown-skinned, non-European immigrants. He also tends to use words like “disgraceful” and “disgusting” a lot to describe anything he disapproves of. This suggests his main mode of judgment is very physical, as opposed to intellectual, ideological, or moral.

Then there’s the much-discussed example of his very physical mocking of Serge Kovoaleski, a visibly disabled reporter, during the 2016 Primaries. That was also an incident where a more benign interpretation was possible, but more unlikely the longer you look at it and get to know Trump’s reactions in various situations. I never thought that incident was much of a big deal, even though I'm pretty convinced he was mocking the man, just like a playground bully. Policies and actions mean a lot more to me, and in a weird way, outright jeering at disabled people tends to be less shocking to actual disabled people than it is to non-disabled observers. Still, this Paralympics comment has me thinking again.

My take is that it's not crucially important how he meant the statement. The incident is, if nothing else, an important reminder that there are still lots of people who aren’t just uninformed about disabled people, but also find disabled people disgusting, physically upsetting, in a very instinctual but profound way. I suspect that Trump is one of those people. I may be wrong. But it’s not actually saying much to suggest that Donald Trump might be disgusted by disabled people. Lots of people are! You don’t even have to be especially evil or hateful to be repelled by watching disabled people on TV or meeting them in person. You can even be disgusted by disabled people, and admire them at the same time.

That’s how ableism works sometimes!

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.

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.

Throwback Thursday

Mr. Peabody and Sherman, classic cartoon characters, in front of an elaborate wall of machinery, the "Wayback Machine" time machine. Mr. Peabody is a white dog with glasses, Sherman is a red haired boy with glasses

Three years ago in Disability Thinking: The Zimmerman Verdict and Ableism
July 14, 2013

Holy cow! My naïveté on whether ableism can lead to police killing disabled people is stunning and embarrassing. That was only three years ago. However, I still think the rest of my analysis holds. One way or another, it boils down to the fact that disabled people are allowed a much narrower range of behaviors and reactions that are considered “normal.” Most often, this leads to fairly ordinary kinds of personal conflicts and annoyances, but in certain situations it can lead to much bigger consequences, including death. I’m not suggesting we should adopt a siege mentality. Just that we should never forget that some of us have less compensating social privilege to shield us, and that it doesn’t really take much for any of us to be in real danger, often when we can’t reasonably anticipate it.

Two years ago in Disability Thinking: “Freakshow” Trailer
July 14, 2014

American Horror Story: Freakshow turned out to be kind of a dud, in my opinion. It had some good things going for it, from a disability standpoint. But it also had a ton of plain exploitation and ridiculous disability camp. Ultimately, it was kind of a wash in terms of positive or negative disability depiction, because the show overall wasn’t very good … even in comparison with other American Horror Story seasons … so it had little impact, good or bad. The video I embedded two years ago isn’t active anymore, so I’ll embed another here, so you can get a taste of why for a short while, the show was a hot and divisive topic in Disability Culture. Also, check out the Disability.TV Podcast episode on AHS: Freakshow.

One year ago in Disability Thinking: It’s Refreshing
July 14, 2015

I have two notes to add. First, the article I originally linked specifically talks about ADA lawsuits, and does so approvingly, which is rare. Usually news coverage of ADA lawsuits assumes that most of them are frivolous, pushed by greedy lawyers and unhinged lone-wolf activists. Mr. Pfeffer offers here a strong defense of lawsuits as essential for making the ADA work. Second, while we should still value occasional validating pieces like this by non-disabled writers, we should also acknowledge that there’s something rather galling about the fact that non-disabled writers about disability still are granted more credibility than actual disabled people writing about disability. It’s another sign of how deeply ableism is woven into the public consciousness.

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.

Throwback Thursday

Mr. Peabody and Sherman, classic cartoon characters, in front of an elaborate wall of machinery, the "Wayback Machine" time machine. Mr. Peabody is a white dog with glasses, Sherman is a red haired boy with glasses

Three Years Ago in Disability Thinking: “The Onion” Nails It

Yesterday I sent a blog post to the Center for Disability Rights in which I explored varieties of really ugly ableism. One of them is the idea that disabled people are lavished with loads of help and special privileges that, by implication, other people envy and resent them for. This is sort of a minor version of that. It’s interesting to me that this is not something that really occurred to me three years ago when I read the “Onion” piece. Instead I focused on mixed feelings as a disabled person about when to use assistance and whether or not it makes me feel guilty. It’s a perfectly valid perspective. I often feel that way and so, I think, do most disabled people. But it’s also classic internalized ableism. No doubt others around us are hating us a little for our “sweet deal,” and instead of resisting that, we wonder, deep inside, whether they might be right. The other missing thing here? Airport assistance is rarely as generous and seamless as the satire assumes.

Two years ago in Disability Thinking: “Let Us Now Praise Famous Men”

I don’t have much to add to what I wrote in 2014. I will just say that in the last several months I have seen in even greater detail the gulf between the two worlds … almost two universes … of disability non-profits. The difference is that the more traditional, charity-model agencies and the newer, more activist-oriented organizations seem to be clashing more often and more deliberately. Where they used to bump into each other occasionally, almost by accident, they now seem to be choosing more carefully when to collaborate and when to take each other on over differences in philosophy and certain critical markers of policy. I think this is probably a good thing. Differences make a difference, and if they are significant, they are worth challenging and arguing over. I’m not saying I relish it or that I’m particularly good at it. I think it’s important though.

Weekly Reading List: Air Travel Edition

Illustration of a two-engine airliner viewed face-on in flight, with a blue sky background and a few wispy white clouds

Games They Play
Athena Stevens, Center for Disability Rights - June 10, 2016

The Others: The Disabled and United Airlines
Brian Rivera, Medium - June 6, 2016

Get Wheelchair Travel Tips on Airports and Plane Flights: check-in, security, aisle chairs and more!
Wheelchair Traveling - October 25, 2012

All Wheels Up, Inc.

I recently started watching YouTube videos of high-end air travel experiences. There’s something almost obsessively indulgent about vicariously enjoying a luxury flight from London to Los Angeles, or flying to New Zealand with a couple of fun, carefree young travelers lucky enough to to get a Business Class upgrade. The only thing I’d like better would be videos of disabled people traveling this way, with this kind of pampering and enjoyment. I've seen wheelchair travel videos on YouTube that are basically "how to" guides, like the video linked above, but none that show either really good wheelchair flying experiences, or any that document how badly things can and often do go wrong.

Of all the consumer service businesses, airlines may be the worst when it comes to accommodating customers with disabilities, especially significant mobility impairments. The only wheelchair users I have met who haven’t had at least one spectacularly bad experience with air travel are those who have never flown.

There are probably several reasons for this.

Airlines aren't known for flawless service as it is, at least for passengers flying Coach. While the industry does manage to move millions of people a week over miraculous distances, with just a tiny number of catastrophic failures, most fliers with or without disabilities have stories about being treated like cattle, or worse.

It’s also undeniably true that the way airliners are designed makes real, independent accessibility extremely difficult, at least from the airlines’ perspective. Aircraft aisles are narrow, and the only way to accommodate peoples own wheelchairs in-flight would be to remove seats, which is something airlines simply can’t fathom ever doing … except for the notable fact that First Class sections are comfortable precisely because they put in fewer seats.

Finally, based on the articles linked above, it appears that airlines cope with the accessibility and accommodation requirements that are imposed on them by dividing responsibility among several adjunct service providers. Flight attendants aren’t responsible for getting disabled passengers on and off planes. Wheelchairs are handled by baggage people who have no contact with the wheelchair users themselves, or even the airlines. There are probably mundane business reasons to run things this way, but intentionally or not, it also everyone involved with deniability. Everyone is responsible and nobody is responsible.

The upshot is that disabled people, especially those with wheelchairs, almost have to expect to be treated terribly, and possibly suffer significant physical and financial harm, if they attempt to fly as freely as everyone else does. It seems like no amount of advance preparation and perfect self-advocacy has much effect at all on outcomes. Sometimes everything works our fine. Sometimes everything goes wrong. It’s a crap shoot with at best even odds.

Aside from the physical failures, disabled people also end up feeling that they are simply not wanted. By and large, it just seems like airlines would rather that disabled people didn’t fly at all. They certainly don't seem to try very hard to make disabled passengers feel welcomed, or to feel that anything but absolutely essential air travel is ever a good idea. And for what it's worth, I think a lot of non-disabled frequent fliers feel the same way. Read an article on the perils of flying with a disability, and if there's a comment section, someone will post something to the effect that people who can't hack flying shouldn't fly.

When a restaurant has steps to get in or an accessible restroom blocked by delivery boxes and highchairs, it’s still possible to believe that the staff do want you as a customer, but are just too ignorant or apathetic to make it work when it counts.

But when these enormous airline businesses with massively expensive, highly complex systems, and a remarkable record of moving millions of people all over the globe, in the air, at hundreds of miles per hour, safely … when they can’t manage to get a wheelchair off a plane without breaking it … it sure seems like they fundamentally would prefer you’d just stay home.

This is where we run into the hard limits of civil rights laws. If you can force or partially coerce a restaurant to be accessible, chances are the people running the place will then at least go ahead and make a personal effort to give you a good dining experience. But when you force an airline to provide accommodations they basically believe are infeasible, they’re going to do it in the most grudging and negligent way they can get away with. It’s their conscious or unconscious way of doing it under protest and sending the signal that you’re not wanted.

If that makes it all sound hopeless, I don’t mean it to be. Affordable air travel is a miracle. I, personally, have never had a really bad flying experience because of my disabilities. But I can walk. I can fend for myself with just a tiny bit of extra help. As far as the airlines are concerned, I'm not really disabled ... just a bit high maintenance. I have traveled with wheelchair users though, and the callousness, stupidity, and low-tech-ness involved astounded me.

It seems to me the best answer is some combination of creating more space so wheelchair users can fly in their wheelchairs, and making all airline personnel directly responsible for ensuring positive outcomes with disabled travelers … passing the buck absolutely not allowed.