Fake News and Disability Culture

There are a lot of articles right now about spotting "fake news." Some of them also try in a slightly wider way to explain how to evaluate the reliability, political bias, and professionalism of various news sources. Here are three decent examples:

6 Quick Ways to Spot Fake News
Kim LaCapria, Snopes.com - January 21, 2016

How to Spot Fake News
Eugene Kiely and Lori Robertson, FactCheck.org - November 18, 2016

10 Ways to Spot a Fake News Story
Melanie Radzicki McManus, How Stuff Works - December 19, 2016

What about disability content on the internet? Are we at risk of falling for fake news stories on disability topics? It's easy to single out anti-vax articles and ableist trolls, but what about the subtler forms of deception and sensationalism? What is the proper role of skepticism in a community that values believing what people say about their own experiences? Are we as good at spotting bad disability journalism when its conclusions do agree with our beliefs? What signs should we look for to sift the good stuff from the garbage in disability media?

I have three suggestions:

1. Recognize the disability version of "click bait."

“Click bait” is content designed to get you to click on a splashy, emotional headline or picture, often for the purpose of earning advertising money. Everybody who writes and posts on the internet wants to be widely read, but some people and businesses focus exclusively on making money by generating clicks, any way that they can. The most common forms of disability click bait include:

- Highly emotional appeals, usually to pity, sentimentality, or ridicule.
- Candid photos and videos of disabled people, (especially children), who likely did not give consent to being photographed or written about.
- Instructions to "Like," or "Share," especially when doing so is equated to prayer.

2. Approach moral / political outrage carefully, especially when your first instinct is to agree.

Healthy skepticism is important, but in disability culture and activism it’s tricky. We also want to accept disabled peoples' stories, even the horrific and "unbelievable" ones. Sometimes, things really are that bad. Nevertheless …

- Ask yourself basic critical questions about claims of extreme ableism or abuse. Does this story seem credible, given what you know about how the world works, based on your own life experiences, based on what you know about the reality of ableism?
- Remember that there is often a difference between the facts … what happened … and what it actually means.
- Do some research into the details of disability issues, and try not to panic over predictions of imminent doom. We may in fact be at a unique moment of real danger for the disability community, but the strengths we had before November 8 we still have, and political change is still hard, messy, and slow … even the bad stuff.
- Be skeptical, but don’t be an asshole about it.

Don't try to debunk stories you doubt, and don’t try to “expose” individuals who write about terrible personal experiences. Remember that in the disability community, really bad things really do happen. Meanwhile, maintain a healthy, base-level skepticism as you read, and add your positive and negative assessments to your evolving thinking about disability issues and ableism.

3. Ask who is speaking.

- Is the author disabled? What is their credibility on disability issues? Being disabled doesn’t mean someone is automatically right about disability matters, and non-disabled people often have spot-on insights, but direct experience and privilege should be included in your assessments.
- Are disabled people quoted or paraphrased in articles about disabled people? This is, or should be, “Nothing about us without us” in action.
- Again, remember, believing peoples’ stories isn’t the same thing as accepting their conclusions. Give individuals the benefit of the doubt. Focus your critical work on their ideas and conclusions.

These tips are only about methods and telltale signs. No matter what the external factors are, in the end you still have to evaluate the disability content itself.

Weekly Reading List: "Drive By Lawsuit" Edition

On Sunday, December 5, “60 Minutes” ran a story about what it described as “dive by lawsuits,” people suing businesses for ADA accessibility problems in order to make money. The story prompted a lot of anger, frustration, and writing from the disability community. It was one of those rare instances of everyone in the disability talking about the exact same thing for a whole week or more. Here is a collection of articles I read …

What’s a “drive-by lawsuit”?
Anderson Cooper, 60 Minutes - December 4, 2016

This is the story that started the week-long-and-counting discussion. Aside from the content and tone of the story, I think there are two factors that intensify feelings about it. First of all, it’s “60 Minutes,” a respected and widely viewed investigative news show that still has a lot of influence with curious but not always highly informed viewers. True, the show also has a parallel reputation for hyperbole and for sometimes engaging in “gotcha” shock journalism. But on the whole, if “60 Minutes” covers a thing, most people assume there’s something to it. Secondly, the story is led by Anderson Cooper, who is widely liked and trusted by a mass audience, but also specifically liked and respected by people with a generally left-wing, progressive point of view. Cooper is one of the few well-known journalists who maintains mainstream respectability and progressive credibility. If Anderson Cooper thinks something is wrong in a segment of the progressive community, something must really be wrong.

The Real Problem with “Drive-By Lawsuits”
Kim Sauder, Crippledscholar - December 5, 2016

Kim Sauder’s blog is usually a good place to start for a thorough deconstruction of something bad happening in or two disability culture. She’s quick on the uptake and her analysis is always sharp.

Anderson Cooper: What Were You Thinking?
David Bekhour, Medium - December 7, 2016

This is probably the most heartfelt and personal of the many “open letter” type responses aimed specifically at Anderson Cooper. As noted above, it hurts extra hard that this was an Anderson Cooper story.

True Activists Don’t Just “Drive-by”
Emily Ladau, Rooted In Rights - December 9, 2016

I’m glad someone pointed out in a detailed way that some ADA lawsuits really are odious and motivated by greed. There IS a problem here. What I especially appreciate is the point that whether or not “drive by” lawsuits are corrupt, they are undoubtedly bad, neglectful advocacy.

Here’s what 60 Minutes Got Wrong About the ADA: Everything
Robyn Powell, XOJane - December 12, 2016

This is another great followup article on the “60 Minutes” story, highlighting the “small details matter” aspect of accessibility, and providing a link to CBS’s response to critics.

Action Alert: Anderson Cooper’s ADA Attack on 60 Minutes
National Council on Independent Living - December 7, 2016

I am not usually a fan of “Action Alerts” in response to bad things in popular media and culture. It often feels too close to some sort of legislation or censorship of ideas. On the other hand, if crafted well, a call to action like this one by NCIL can focus public attention on media shortcomings, and maybe encourage better coverage in the near future.

A Bit Of Local Advocacy

A little over a week ago, the local newspaper where I live published an article about a community forum on New York State’s plans for reforming and all but phasing out sheltered workshops. The exact directives and lines of authority are a bit murky, but the article mainly focuses on the idea that due to the Olmstead decision, a well-known sheltered workshop in Plattsburgh, my home town, is being forced to adopt changes that threaten its survival. What caught my eye, of course, was the headline:

Advocates for disabled: Integration not the answer
Tom Marble, Press-Republican - May 5, 2016

“Oh, crap!” I thought. I had a pretty good idea before I even read the thing which agency or type of agency was probably involved, and what the message would be. It was our local ARC, named the Advocacy and Resource Center, which runs a sheltered workshop called Champlain Valley Industries, (CVI). And the article basically recounted a bunch of CVI staff, workers with disabilities, and families saying, in effect, “Please don’t close the workshop. I like working here!” with an added implication that with unemployment a big problem around here as it is, how in heck are these people supposed to get a normal job? How is it an improvement for them to be kicked out of productive work in a safe, sociable environment and then not be able to get a job at all?

The overall point seemed to be that the big bad State is ruining things as usual, sticking their noses in and touting pie-in-the-sky ideas that have no relation to the way things really are.

I'll stipulate that this workshop probably IS safe. It's certainly nothing like those horror story places where people are virtually imprisoned, plucking dead chickens for pennies a day, housed in unsanitary bunk houses, exploited for huge profits. It's not like that. However, it is a highly regulated workplace, cut off from the wider community, and I'm not at all sure socializing is encouraged in the actual workshop. It's more likely that being chatty and having fun is carefully documented as inappropriate behavior, and taken as clinical evidence that these workers aren't ready for mainstream work. But the important thing is that they have something to do and a place to go during the day, which is quite a win-win for everyone ... or so the reasoning goes.

The day the article came out, I think, I happened to be talking or emailing with Robert Poulin, who is the Executive Director of the North Country Center for Independence, where I used to be the ED. He said he was going to work on a response and asked if I wanted to work on it with him. I was happy to do that, and today the Press-Republican posted our “In My Opinion” online. The article will be out in print tomorrow.

In My Opinion: Sheltered workshops not the answer
Robert Poulin and Andrew Pulrang, Press-Republican - May 17, 2016

Incidentally, another local disability activist reminded me last week of a Press-Republican article in 1993, about another community forum where the ARC brought lots of it’s “clients” to protest another effort towards more community integration … in that case a plan to fold the ARC’s buses into a county-wide combined fleet open to everyone. This, of course, would have meant people with developmental disabilities riding the bus with non-disabled people, and just about everyone who spoke were against it, though most of them put it in terms of losing a service, not directly objecting to integration. There is a similar dynamic at work now with the sheltered workshop issue. They don’t directly oppose having a better job or getting paid more, it’s just that they don’t want to loose a thing they have, whatever it is, for any reason.

The reminder of that hearing triggered vivid memories. It was the first time I saw how internalized ableism among people with disabilities sometimes motivates us to oppose things we should not oppose. It’s also the first time I really understood that the “disability community,” like every community, doesn’t have agreed upon opinions about things. The most you can say, I think, is that those of us who are engaged in disability policy issues by choice share a fairly predictable and distinctive set of ideas about disability. Those of us who aren’t engaged, or are engaged only when forced to be, are much harder to predict, and more likely to be swayed by fear of change.

Ironically, we share most of the same negative experiences of ableism and being “screwed” by ham-fisted “authorities,” but we come to different conclusions on what to do about it.

I also want to say that it was a real pleasure to work with Robert on our response.

Throwback Thursday

One year ago in Disability Thinking: Hospital Blogging! Part 5

Last year, I spent a week in the hospital with pneumonia. I blogged about the experience, and exactly a year ago today, I posted this wrap-up after coming home. My hospital experiences have been mostly decent, so why do so many disabled people have terrible histories with hospitals? One of my theories is that in most case that go bad, everything starts out just fine. Then something happens … a staff member pisses off the disabled patient, or the disabled patient pisses off the staff. Trust and respect are almost immediately destroyed, and are replaced by the worst stereotypes the disabled patient and staff have of each other. Disabled people are nit-picky whiners, manipulative, secretive, over-vigilant, and spoiled. Doctors and nurses all hate disabled patients, disapprove of them, and want to bang them all in nursing homes at the least excuse. Once things start to go bad, it’s very hard to get them to go in the other direction. That’s what I think happens. I don’t know how to fix it, and I’m acutely aware that I’m lucky it hasn’t happened to me … yet.

Two years ago in Disability Thinking: Questions Not Asked

Yes, there is a pattern here and it seems like disability bloggers are well aware of it. Every April, we get a flurry of heartwarming news stories about disabled kids being invited to the high school prom by non-disabled students who are presumed to be doing it as an act of kindness or charity. And then a relatively small handful of disability bloggers and commenters try to remind everyone that disabled kids are human beings and not motivational characters in other peoples’ morality plays. We probably sound really sour and cynical. But I really think it’s hard to dismiss these more specific questions about the journalism side of the routine. It’s pointless and probably kind of mean to vent our frustration on the students, families, or maybe even the schools involved. But journalists are supposed to ask questions, even about “good news” stories, and these are important questions that could yield truly interesting answers. We’re all still waiting for a real story about disabled kids, high schools, and the prom.

Throwback Thursday

One year ago in Disability Thinking: “Two Ways To Improve Disability Journalism”

These suggestions hold up pretty well, especially the second one. Journalists of all kinds absolutely need to stop doing stories about disability issues and disabled people without in some way quoting or fairly describing the views of disabled people. And the key is realizing that talking to parents and professionals doesn't count. Their voices and perspectives are important, but they are not the same as the voices and perspectives of disabled people.

Two years ago in Disability Thinking: “3 Kinds Of Ableism”

It is probably time for me to revisit what Ableism means. I've been thinking lately that one of the problems with "ableism" and "ableist" as words is that like "racism" and "racists, they have become insults instead of descriptions. In the case of ableism, I think this is partly because when people think of "ableism" they picture a caricature that looks and sounds like a middle school bully ... a horrid, scowling creep who shouts insults at the boy in a wheelchair during lunch and laughs at their girl who has trouble speaking easily in class. Ableism is a lot more varied and complex than that. Otherwise kind, decent people do ableist things all the time. They overlook ableism every day. And they have ideas about disability that are basically ableist, but they don't recognize them as such. More about this soon, I think.

Growth Attenuation

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.

Keep Your Eyes On The UK

There’s probably going to be some kind of engineered showdown over funding Social Security Disability here in the United States. Disability activists are going to be pulled in a few different directions. Should we join the effort to “reform” the program and risk validating benefit cuts and narrowing eligibility? Or, should we line up to defend the program as it is, and miss the opportunity to reduce work disincentives and make other improvements we’d actually like to see?

Before we get too far down the road, we should pay careful attention to what’s been happening with “welfare” cuts in the UK, including cuts specifically affecting disabled people:

"One thing the welfare bill accomplishes is to put people who have failed a fitness to work test on to the same payment as people who have passed it, like some tent-revivalist preacher tipping sinners out of wheelchairs and screaming “Walk!” Who would have thought that electing people who hate the welfare state to run our welfare state could go so badly? In practical terms this change means people with things such as MS and Parkinson’s will lose £30 a week. That extra £30 a week was there because, sometimes, chronically ill people’s bodies don’t work so well and they might have to get a bus or a cab or pay the babysitter to stay for an extra hour so they can get to and from the latest humiliation from the Department for Work and Pensions."

This is from an angry article in The Guardian about the Labour Party, the UK’s main left-of-center party that historically has fought for the welfare state and defended the UK’s poor and working class. It’s roughly … and I mean very roughly … equivalent to the US’s Democratic Party. Yet, apparently they are pretty much going along with the Conservative Government’s austerity policies, which include a two-faced stance on disability policy.

Publicly, they use the language of empowerment and confidence in disabled peoples’ ability to work and be self-sufficient, while policy-wise they cut benefits and make everyone who gets benefits prove to poorly-trained bureaucrats that they really do need their government support. Meanwhile, they nudge and wink and tisk-tisk about “welfare scroungers."

It sounds familiar. The same kind of thing could easily happen here, if we aren’t very careful.

By the way, £30 a week, £120 per month, is equivalent to almost almost $47 per week, $187 per month. That's more than the cost of a few lattes.

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I Was So Young ...

This morning, a disability activist here in Plattsburgh emailed a bunch of people this Op Ed piece I wrote for the Plattsburgh Press-Republican newspaper about the Americans with Disabilities Act, just before it was signed into law on July 26, 1990.

When I saw what it was, I had a moment of dread. I couldn’t remember writing it, and I wondered if it would be embarrassing. In fact, it’s not bad.

On thing I noticed is that there are actually very few people making the libertarian argument against the ADA anymore. Apart from a few think-tank theorists, hardly anyone uses the ADA as an example of government overreach anymore. That’s a good thing, but also a bad thing. It’s good that we mostly don’t have to deal with ideological opposition anymore. But it’s also disturbing because it is further evidence that most people don’t see the government as an active participant … a cheerleader maybe, but nothing anyone feels afraid of anymore.

Any residual venom seems to be reserved for a few lawyers, and for disability activists.

Anyway, enjoy this pre-ADA, pre-Web, pre-Blog, pre-Disability Thinking snapshot from the archives.

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It's Refreshing

Why disability rights is everyone's business

Jeffrey Pfeffer, Fortune - July 14, 2015

Here we have a rare and refreshing thing. A business expert writes an article advocating stronger enforcement of disability rights laws, and it is published on a business magazine’s website.

What’s more, the writer, a non-disabled person who gained his initial insight through a temporary impairment, makes a stronger, simpler, more insistent case for disability rights laws than a lot of disability journalists, bloggers, and activists. Well, better than me anyway. I tend to hedge my advocacy posts with all sorts of caveats and acknowledgements of opposing views, something I think a lot of us are conditioned to do.

We have to keep reassuring the “average reader” that we are rational and realistic. We know our issues rarely make it to the front burner. We know “most people” don’t really understand, so they can’t be blamed. We have learned to live with unnecessary injustice. We’re not happy about it, but we’re not surprised.

Maybe that’s why laypeople and newcomers to disability issues can sometimes speak with a clearer, louder voice. What they lack in authority they make up for in fervor and sheer astonishment. They see, more clearly and emotionally that than some veterans of the struggle, that disability discrimination and inaccessibility at this point isn't just wrong, it is surprising, and it's bizarre.

It doesn't happen that often, but when a non-disabled journalist does a disability story and instead of crying tears of pity, instead asks, basically, "Why the hell are things still so shitty for these people?"... well, it's refreshing.

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Dueling Accessibility Stories

In Marshall, Minn., Main Street is rising up against flurry of disability suits

Matt McKinney, Minneapolis Star Tribune - May 18, 2015

Access for the disabled: Demanded by law, often ignored in practice

Kate Ross, Minneapolis Star Tribune - May 19, 2015

I applaud the Minneapolis Star Tribune for giving space to “both” sides of an accessibility debate.

It does seem like objectively, what’s going on with this “non-profit” is pretty shady … suing businesses for ADA violations as their main source of funding. I can imagine an organization doing something similar in a more productive way. If they chose their targets with more care, restricted them to larger, better resourced businesses, or offered settlements involving ADA compliance rather than just cash payments. Apart from the possibility of being a straight-up ripoff, it seems like the people running this organization have the kind of tunnel vision you sometimes see in disability activists, where they literally don’t perceive how the general public views the issue. It’s one thing to decide you don’t care, and pursue what’s right no matter the consequences. It’s another thing entirely to assume everyone will understand, because how could they not?

On the other hand, it’s worth wondering whether the business owners profiled in the first article are truly innocent victims, whether they are woefully ignorant of the ADA, or maybe just don’t give a damn about accessibility. Is this guy closing his bowling alley because he can’t afford to run it anymore due to the lawsuit, or is it out of spite? Maybe he was going to close it anyway, and he’s using the occasion to give a public “f-you” to people he sees as whiny busybodies.

The second article, published the next day, reminds readers that accessibility is a real issue, and that continued failure to make a business accessible 25 years after the law passed is a violation of the law. We may question the motives of the plaintiffs, but that has nothing to do with the guilt or innocence of the defendants.

I also found it interesting that the second article is by a young woman who had a short-term disability. In fact, her arguments are the usual, standard, pro-accessibilty material. They read like she has just done some research on a new subject for her … which seems to be the case exactly. Her editorial also brought up those old frustrations a lot of disabled people feel when a “newbie” describes their shock to discover that accessibility is still a problem today. Sometimes it seems like we disabled can repeat our complaints forever, but it doesn’t sink in until a non-disabled, temporarily disabled, or newly disabled person “discovers” the issue. In this case, that’s okay, because this article coming a day after the first serves a valuable purpose, in just the right way.

As far as I’m concerned, this is the issue. The Americans with Disabilities Act has been federal law for almost 25 years. I can’t imagine a single business, program, facility, or government entity that can legitimately excuse lack of accessibility by claiming ignorance. All of the facts and information you need to comply are freely available on the Internet. If you care enough to spend an hour browsing, you can at least figure out what you need to do. It takes a little more thought and consultation to decide how to proceed, but that’s pretty easy, too.

Suing businesses for personal gain or punitive fines isn’t the best way to do advocacy, in my opinion. On the other hand, I don’t feel sorry for any of the businesses that find themselves targeted, if they are, in fact, not accessible. There’s been plenty of time and opportunity do fix this. Just get on with it.

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