Weekly Reading List

I’ve got to cut down on the blogging breaks. It’s hard to get back into the daily habit. A rundown of articles I’ve read recently is a good way to get back in shape, though.

Why do I think I’m autistic …

Lydia Brown, Autistic Hoya - December 12, 2015

As far as I know, I am not autistic, but I am fascinated with the way autism is understood, misunderstood, and often grossly misinterpreted. One of the biggest hangups people have about autism seems to be the idea that autistic people are, by definition, impenetrable and unknowable. In that light, personal testimonies from autistic people about what it’s like to be autistic should be absolute gold, especially to parents of autistic kids and other people who want to help autistic people. Sadly, few people who say they are deeply invested in the “problem” or “epidemic” of autism seem to read or take seriously the actual words of autistic people. I can even understand that a bit when it comes to some of the more defiant, challenging, or poetic things I’ve read by autistic writers, even though they’re great, too. But this is such a matter-of-fact description, largely free of judgment, that I can’t believe it isn’t required reading for everyone connected in any way to an autistic person. With, clear, accessible things like this available for anyone to read, the biggest mystery to me about autism is why it’s considered a mystery at all.

Disabled Model Invited to Speak About Diversity Couldn't Get to Podium Because There Was No Wheelchair Ramp

Shelia Cosgrove Baylis, People Magazine - December 11, 2015

In many ways this is a pretty standard story of bonehead disability discrimination. I call it “bonehead” discrimination because it is both unintended and completely, easily avoidable. I am including this article on the list because it’s so unusual to see a disability story that is entirely about accessibility … and not at all teary or heartwarming … and in a popular magazine read by people who mostly aren’t tuned in to disability issues. It’s even better that readers probably won’t feel sorry for Ms. Jay, but will instead be angry right along with her. That’s absolutely central to the difference between the Medical Model and Social Model approaches to disability … the difference between “misfortune” and “injustice.”

By the way, at some point I’m going to have to do a post about what “unintended” actually means in the context of disability discrimination. I think this incident might be a good starting point for that conversation.

ISIS issues fatwa to exterminate disabled children, 38 cases of babies killed through lethal injection or suffocation

Alfred Ng, The New York Daily News - December 14, 2015

I hesitate to post this item, because there is so much fear and hysteria around ISIS, and with some justification. One the one hand, I'm a bit suspicious about the sources of this story ... mostly virulently anti-Muslim groups and tabloids like The Daily News. On the other hand, I have no trouble imagining that a group like ISIS might, in fact, institute a horrible policy like this. Totalitarian regimes based on hatred, that are focused on human nationality or affiliation as if the group is an organism that can be pure or poisoned seem to lead to a particularly extreme form of disability rejection. If the "nation" matters more than the individuals who make it up, then ordinary ableism can easily become a mandate for elimination. The parallels to Nazi Germany are pretty obvious.

I also think it's interesting that ISIS may be connecting disabled children in their territories with "foreign" fighters ... people from other countries who join ISIS. Is that the only way they can rhetorically explain the presence of disability in the "perfect" little world they are creating?

Still, we should be at least a little cautious. By all accounts, the Imperial German Army behaved truly horribly in the opening months of the FIrst World War. That doesn't alter the fact that the Allied countries didn't whip up a bunch of preposterous anti-German propaganda anyway.

Georgia accused of breaking federal law by segregating students with disabilities

Rachel Stockman, WSB TV 2 Atlanta - December 7, 2015

Stories like this make it harder and harder to maintain the sober, sophisticated take on disability rights, wherein everyone acknowledges that most disability discrimination is accidental and everybody accepts disabled people now. If that’s true, then why do segregated programs and facilities for disabled people still exist … not just in isolated pockets, but endorsed and supported by entire states? It’s hard to escape the conclusion that a critical mass of people in any given area or state still, basically, don’t want disabled people around, getting in the way, and sucking up resources from normal, proper people. I have no call to be regionally snobbish about Georgia, either. My state, the vaunted Empire State, still sends at least some students to separate schools. They even have a catchy acronym like Georgia’s GNETS … in New York it’s the Board of Cooperative Educational Services, BOCES.

The Disability Cliff

Samuel Bagenstos, Democracy, A Journal Of Ideas - December 16, 2014

I have had a weird sort of attitude problem for many years about parents of disabled kids who get really scared and angry when they realize that seamless, comprehensively planned services for their disabled sons and daughters won’t automatically extend into adulthood. First of all, I tend to think that the problems themselves are not as terrible as they are often portrayed. Adult disability services are fragmented and you have to do a lot of planning and advocacy to make them work, but they are there and they do work for lots of people. Second, the outrage parents express about this has a tinge of privilege and entitlement … “How dare you all walk away as soon as my child turns 21!” Like I said, I have an attitude problem about this. That’s why I found this article so valuable. It finally really convinced me that the “Disability Cliff” is real, and that it’s a lot worse than it needs to be. Support services for adults with disabilities should be a lot simpler, easier to access, and secure. And Sam Bagenstos’ article explains precisely how. It’s a long read, but well worth the effort.

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Weekly Reading List

Dealing With Accidental Discrimination

Ari Ne’eman, Sometimes a Lion - November 30, 2015

What can I say? When Ari Ne’eman explains something it is explained, in crystal clear, easy to understand language. Here, he describes and explains the difference between “disparate treatment” discrimination and “disparate impact” discrimination, walks the reader through some sticky conflicts of accessibility and accommodation, and provides a balanced perspective on “reasonable accommodation” and “undue burden.” Along the way he manages to be very sensible about the difficult balance in disability advocacy between assertiveness and flexibility. This kind of thing is essential for newcomers to disability rights, and invaluable as a refresher for old-timers.

We’ve tried to smooth disabled peoples’ path back to work. Why isn’t it helping?

Lydia DePillis, Washington Post Wonkblog - October 23, 2015

This article is a little out of date, since the immediate solvency problem for Social Security Disability has been remedied, and a few reforms are on their way. However, the fundamental problems cited in the article remain. Overall, it’s a very detailed, balanced view of what’s wrong with income support for disabled people in the United States. That said, there are two issues I still feel are not sufficiently dealt with by advocates on any side. First, I don’t think there’s enough recognition that different disabilities do tend to suggest different kinds of employment outcomes for the people who have them. No disability is an absolute impediment to employment, but some disabilities make full self-sufficiency and consistent employment more difficult than others. Second, reform advocates are naturally reluctant to say what may need to be said. Any meaningful reform to encourage employment will probably cost the government more, not less, at least for awhile. I think it’s a fantasy for anyone to think that we can put massive numbers of disabled people back to work and thus enjoy instantly massive savings.

BBC 100 Women: Fighting the disability taboo in Pakistan

Shaimaa Khalil, BBC - November 27, 2015

Here’s a perfect example of a bona fide inspiring story that isn’t “Inspiration Porn.” I am really coming to think that the key difference is who’s doing the talking. When the narrator, writer, social media poster, etc. is talking admiringly about a third-party disabled person, or about other people being nice to a disabled person, it tends to veer into “Inspiration Porn.” When the disabled person speaks for him or herself, it feels different, less sentimental, more empowering and real. The content here is a bit sappy, and if someone else was saying them about her, I’d probably resent it. But hearing it from her directly makes all the difference.

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Weekly Reading List

Life got in the way yesterday, so I’m a little late with my weekly run-down of disability articles I read last week.

You think holiday air travel sucks? Try flying while disabled. On American Airlines.

Sawyer Rosenstein, Boing Boing - November 23, 2015

Nightmare stories of disabled air travel often read like laundry lists of countless little screws ups that add up to one big fiasco. Somehow, the moral of the story never comes, or amounts to “Acme Airlines sucks” or “do better.” It’s hard to translate what on the surface seems like personal bad luck into prescriptions for systemic change. However, after reading this account, I wonder if there are any airlines or airports who hire full-time troubleshooters specifically for disabled passengers. It just seems like they have all of the systems and equipment needed, but half the time or more the people involved can’t seem to make them work in the right place and right time. Maybe that requires a staff person or two whose only job is to whizz around an airport as needed solving the logistical problems. They would have to have the recognized authority, of course, to compel all the other staff to cooperate. Is anything like this in place? Has anything like this been suggested?

Why I’ve Had it With “The Mighty”

Meriah Nichols, A Little Moxie - November 16, 2015

This blog post by one of the better-known disability bloggers attempts to dissect a rather “inside baseball” issue for the disability blogger community. What do we make of a website that seems to be trying in an admirable way to bridge the gap between people with disabilities and parents of kids with disabilities, aka, special needs parents? Can a disability-centered website do justice both to disability issues and the disability experience, and also provide a forum for parents of disabled people to share their innermost struggles and doubts? I admire “The Mighty” for trying, but like Meriah Nichols, I am often repelled by the results. There are some great articles by disabled writers, and some very good ones by parents. But there is just as much tear-jerking inspiration porn, and worse, disturbing articles where parents bear their souls and tell us … all of us … all of the ugly feelings and thoughts that run through their minds on the bad days. Like Meriah, I think there’s a place for that, but that the people who run “The Mighty” need to think more carefully about what they are doing. Intentionally or not, they have created a “space” where parents and disabled people meet, and it often reveals how big the gap can be between these two experiences. I think they need to do a better job of refereeing and reflecting on this gap, instead of just publishing everything and chalking up the clashes to ordinary differences of personal opinion. The other problem is that “The Mighty” is, in fact, mighty. It has a veneer of credibility and professionalism that gives it an outsized voice, and probably misleads casual readers into thinking it is some kind of authoritative voice on all things disability. In fact it’s something much more complicated and specific.

Where is the Line between Inspiration and Inspiration Porn?

Marissa Stalvey, Curlability - August 6, 2015

When It Comes to Inspiration Porn, “Role Model” Is My Most Effective Anti-Inspirant*

Ingrid Tischer, Tales From The Crip - November 19, 2015

I have mostly given up trying to write a complete examination of “Inspiration Porn,” partly because I lost all of my notes and drafts in a cloud mishap, but also because lots of people are doing a good job of it themselves. These two articles dig into the question quite well, each highlighting different aspects of the phenomenon. On issue I think has still been under-discussed is the personal taste reactions people have to sentimentality. If I do pick up the topic again, that may be my angle.

The State of Americans with Disabilities

John Hockenberry, The Takeaway - November 20, 2015

This is a great followup to the Minneapolis Star-Tribune’s excellent investigative series on disability segregation in Minnesota. Also, if you haven’t heard of or heard much of John Hockenberry, this edition of his radio show, The Takeaway, is a good opportunity to catch up with one of the most interesting and wide-ranging voices of the disability community. Hockenberry’s book, Moving Violations: War Zones, Wheelchairs, and Declarations of Independence, influenced me a great deal back when I was just entering the deep end of disability rights and independent living.

#AbleistScript: Pointless Venting, Or A Sign Of Hope?

Where’s Your Dog? - November 9, 2015

I had trouble at first figuring out this blogger’s point of view on the #AbleistScript hashtag. Was he or she for it or against it? Obviously, for it, but with an understanding and interest in how others may perceive and misperceive it, especially non-disabled people. I think it’s perfectly fine for disability bloggers to say, essentially, “I don’t care what others think, this is for us, our community.” However, I also think it’s important for us to stay anchored to “mainstream” opinion, even when those opinions are inherently flawed and uninformed. And that’s what this blog post does. I’m going to read more from this blogger for sure.

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Weekly Reading List

Failing The Disabled (Project Overview)
Minneapolis Star-Tribune - November 8, 2015

There's only one link on this week's Weekly Reading List, because it will take you to a unified series of five articles by the Minneapolis Star-Tribune, examining how outdated policies and practices in Minnesota affect the lives of disabled people there. It's a brilliant series, and we need to see more journalism like this all over the country. It is heart-rending, but not in the usual way for disability articles where you feel pity for the disabled people. Instead, you feel angry at the backwards thinking, bureaucratic laziness, and abject, ignorant fear that keeps these policies going. The series is a remarkable blend of no-nonsese investigative journalism and deeply emotional human interest, a combination rarely seen in disability stories. It IS possible to write emotionally resonant stories about disabled without lapsing into "inspiration porn."

I am massively impressed.

I would only add one note. The abuses and stupidities described in these three articles are products of bad systems, not just bad people. Please don’t think that group homes, sheltered workshops, and the like can be just fine, as long as you find just the right people to run them. Good people go in with great intentions, but the systems overrule them. They are flawed, and it’s time to abandon them, not keep trying to make them a little nicer.

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Weekly Reading List

Hate crime against disabled people rises 41 per cent in one year

Caroline Mortimer, The Independent - November 8, 2015

The statistical aspect of this reminds me a bit of the panic over “skyrocketing” rates of autism, which are mostly due to better identification of autism that has always been prevalent. It’s unlikely that the actual rate of occurrence of hate crime has gone up 41 percent in one year. More likely that in the last year, reporting has gone up and maybe followup and record-keeping have improved. In a way, that’s good news. That said, it’s still a terrible problem, and hate crime against disabled people may, in fact, be on the rise. It’s hard to tell. I also wish the article had mentioned something about why people commit hate crimes against disabled people. I sometimes get the feeling that people writing about this leave out the content of peoples’ prejudices, because talking about their beliefs seems to endorse them. How can there be a “because” for something so terrible? I think there’s always a “because.” It’s probably a bullshit “because,” but people rarely do things for literally no reason. And knowing what people are thinking can help us fight and counter their thinking. Otherwise, we’re just condemning and groping in the dark for answers.

It Gets Better: Surviving the Bullies

Karin Willison, Free Wheelin’ Travel Blog - September 4, 2015

Re: my comments above … I really appreciate Karin mentioning the reasons her school bullies gave for why they did what they did:

“ … the girls tried to blame me for being bullied. They said it was my fault because I looked weird and did things they thought were strange.”

Again, it’s a piss-poor reason, but it tells us something. It suggests, to me anyway, that some kids really can’t handle any kind of difference, and will latch onto anything they can to differentiate themselves and establish and ironclad pecking order. I’m know sure how that understanding helps, but it certainly makes it less personal, at least in retrospect. Maybe it also points to the reason why schools should spend more time getting kids to be comfortable with difference. That’s important, because there are lots of people who regard this effort as “political correctness” or “indoctrination.” I think it’s important to connect the dots between bullying and prejudice. It’s not just a kid thing, as Karin also points out in her discussion of more recent bullying she experienced online. On a side note, I wonder if bullying in online discussion groups is an indicator of a different problem … people who literally don’t know any other way to make an argument than to hurl insults?

Why disabled people like me fear medically assisted suicide (Commentary)

Stephanie Woodward, Syracuse.com - November 6, 2015

This is my new favorite editorial against assisted suicide. It’s hard-hitting, but also humane. It doesn’t lean too heavily on a “slippery slope” argument. We are going to have to be good at explaining ourselves on this issue. Being in favor of assisted suicide is at this point a full-fledged part of the progressive policy agenda. I think that’s a big mistake, but I can understand why progressives tend to support it. It’s not that we have an opposite view, we have sort of a side view, a change the subject view. Progressive see it as a personal choice issue. We see it as an existential issue and a priorities issue … because there’s more intense support for people who want to die than there is for services that help people want to live. For the moment, I think the best we can do is keep raising the disability angle. People tend to forget the disability angle on just about everything.

Caring for an adult child with a disability is equal parts love and fear

Erica Curless, The Spokesman-Review - November 8, 2015

I posted this in the comment section of this article:

“This article raises some important issues for people to think about. However, one option isn't even mentioned ... gradually transitioning to a situation where Blaine is assisted by paid in-home staff. Since his father is, thankfully, relatively healthy, there is at least some time to do this. When he passes away, Blaine could then have 2 or 3 familiar staff who could see to his needs as his father does now. It would also allow his father to care for himself and get a bit of rest. The way it's presented in the article, the only choice for families of significantly disabled sons or daughters is a) provide total care, solo, forever, or b) put them in a nursing home. That's a false choice, and it would have been helpful if the article had informed readers that there are other options and models for long term, care.”

On Smarm

Tom Socca, Gawker - December 5, 2013

This article isn’t related in any direct way to disability issues. I re-read it last week because I made a mental connection between what the article describes as “smarm” and something I’ve been thinking a lot about, “Inspiration Porn.” Ultimately, I don’t think the two concepts match up very well. There’s a bit of an overlap, but not as significant as I imagined it might be. However, I do think Socca’s observations are very interesting, and may include important ideas to consider for Disability Culture. How much of the opposition we fight uses Smarm, and do we use Smarm too?

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Weekly Reading List

In which I try to find a link between 5 very different disability-related articles from last week ...

Applebee’s Employee With Autism Reportedly Unpaid for a Year

Melissa McGlensey, The Mighty - October 21, 2015

Applebee's Apologizes for Not Paying Employee With Autism

Gillian Mohney, Good Morning America - October 22, 2015

Brooklyn Mother Fights for Changes After Disabled Son Misses Graduation by One Point

Elizabeth Harris, New York Times - October 19, 2015

Disabled student's death sparks outcry over memorial

Daniel Bethencourt, Detroit Free Press - October 22, 2015

Special ed teacher quits: ‘I just cannot justify making students cry anymore’

Valerie Strauss, October 25, 2015

I chose all five of these articles because they all feed into this feeling I have about how mainstream journalists and even some more specialized disability outlets cover instances of apparent disability injustice.

A key thing I think we all tend to miss is the role of directionless stupidity and incompetence. I really think disabled people suffer more from bureaucratic confusion, and from systems too complex for ordinary people to run effectively, than we do from ableism and discrimination. Every so often, we run into people who operate from fundamentally misguided ideas about disability, and people who just can't stand dealing with disabled people. More often, though, we deal with over-worked offices led by besieged managers who above all want a bit of job security and to get through a week straight without undue stress. They don't  mean us any harm, but many of them long ago gave up doing us any real good.

A few seem to be especially rudderless dealing with people experiencing intense emotions, like the school principle who apparently couldn’t manage to say “Yes, of course let’s do it,” while explaining that the requested moment of silence would have to be carried out with due deliberation and care. How did such a simple situation get so out of hand? And I find myself sympathizing with the fed up Special Ed teacher, but also craving more concrete information on exactly what directives she is talking about.

This is all terrible, of course, but I think it's a different kind of problem from naked disability prejudice and outright corruption, which is how these incidents usually get covered.

For example, I would bet real money that in the Applebee's case, there was a miscommunication about overlapping responsibilities between the company and the state Vocational Rehabilitation program, which the Mighty article mentions but the Good Morning America story does not. It's a piss poor situation, but it may not have been anyone's intention to rob the worker, or to do so because they figured they could get away with not paying a disabled person. It may have been exactly that, but it doesn't look like anyone really tried to find out. If they did, we didn't get to know about it, and so we're left with the worst possible interpretation. All interpretations here are bad, but deliberately not paying a guy is worse than not realizing it's time to take over paying him from some other agency

At least the New York Times identified the real unfairness of the graduation story. At first, it sounded like a pissed off Mom on her high horse because her son failed ... by a fraction ... to graduate. The key isn't that he didn't get a diploma. The issue is that non-disabled students are allowed to graduate when their scores are on the borderline, but for some reason disabled students are denied that cushion. Maybe nobody should be allowed to skate by with test scores a point or two below passing, but if you're going to allow some people to do it, don't deny it specifically to disabled kids, some of whom really probably deserve a break when it comes to standardized tests. The story mentions this, but again, doesn't really emphasize it as much as the mother's anguish, which is real, but kind of beside the point.

I guess that sums up most disability journalism right now ... covering the story, but missing the bigger point.

Addendum: I forgot to mention that according to GMA article on the Applebee's flap, the company sent an apology, to the worker's parents. Did they apologize to him? This is going to be the subject of another blog post, I'm sure.

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Weekly Reading List

Notes on last week’s reading …

Federal Disability Employment Hits Record

Shaun Heasley, Disability Scoop - October 19, 2015

This is clearly a good thing, but in what sense? More jobs for disabled people is more jobs for disabled people. How many of the people who got these jobs would have gotten private sector or local government jobs if the federal jobs hadn’t been made available? I’m guessing quite a few, since the job market for disabled people is pretty thin. Plus, federal jobs have some of the features that disabled people value most, like job security and excellent benefits. And then there’s the commitment by the government to employ disabled people as a good in itself, a commitment that’s very rare in other workplaces. What I’d really like to know is how much of a dent does 100,000 newly employed disabled people make in the overall unemployment rate for disabled people?

Wait, disability model what?

Cheryl Green, Who Am I To Stop It - October 14, 2015

Thank God for Cheryl Green for stating the obvious, because for some reason it rarely gets said. Those two main models of how to understand disability are useful, but not doctrines. Mixing them is just fine, as long as you are thinking about what you are doing and what you’re trying to say. Disability activists need to say so more often, because people can get awfully uptight about the Medical Model / Social Model dualism.

It's time for a new understanding of disability, especially in the arts

Lane Harwell, Fox News Opinion - October 14, 2015

The article is fine, nothing radical, and the goal is worthy, but you can tell from the comments that it's out of place in a Fox publication. This man is encouraging arts organizations to include more disabled artists at all levels, but commenters hear this as a mandate forcing disabled people to participate in the arts. How they get that from the article is beyond me.

I’m Not Here For Your Pity Or Your Punch Lines

Emily Ladau, The Disability Dialog - October 15, 2015

This kind of thing rarely happens to me, but that's partly because I'm a bit of a hermit. More about this after the next article listing …

Time Drains Away

Bill Peace, Bad Cripple - October 14, 2015

I get impatient and judgmental of fellow disabled people's outrage at these predictable instances of ableism. Then I remember that if stuff like this happened to me half as often as it does for others, I would be in a constant state of fury. What people who complain about disabled people being cranky fail to grasp is that in most cases, the ill-temper they actually see in us is us being hugely restrained. And as I say, I forget this, too.

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Weekly Reading List

There’s good stuff to read every week …

Iain Duncan Smith tells disabled people to work their way out of poverty

Jon Stone, The Independent - October 6, 2015

Employment is a fairly simple issue for disabled people. Most of us want good, well-paying jobs, but way too many of us aren't gainfully employed at all. There are both internal factors and external factors for this. In the disability community, we usually focus more on the external factors, like discrimination.

Benefits are important to disabled people, too. When we need them, we really need them, and it can be galling when we have to defend that need in the face of both specific skepticism and anti-benefits / austerity ideology.

The real nightmare is when people like Iain Duncan Smith try to use our desire for employment as a justification for cutting and narrowing benefits. We are told that the benefits system keeps us under-employed, and we know that in a sense, this is true. The difference is that we recognize it as the structural problems of an outdated system, while politicians ... usually conservative ones ... see it as a moral issue of benefits bankrolling laziness and complacency. Yet they are starting to learn to speak our rhetoric, suggesting that tightening and cutting benefits will somehow, magically, liberate us to achieve our employment dreams.

‘Rosemary: The Hidden Kennedy Daughter,’ by Kate Clifford Larson

Meryl Gordon, New York Times - October 6, 2015

I never idolized the Kennedys, but I don't take any sort of pleasure in finding out more bad things about the family. It makes me kind of uneasy to think that people will read this as simply more fodder for political partisans to prove that the Kennedys were horrible. One reason I do want to read this book about Rosemary is that I'm curious whether what happened to her was worse because she was a Kennedy, or whether her experiences were actually kind of typical for mentally or intellectually impaired people of her time. My guess is that her life was pretty typical, but made somewhat worse by Joseph Kennedy's ambition and patriarchal arrogance.

Sticks and Stones

Karin Hitselberger, Claiming Crip - October 6, 2015

This is a heartbreaking account of bullying, and it raises a question I have thought about for a long time. How much disability-related bullying is really about disability, and how much is disability just another of many meaningless excuses for bullying? My guess is that bullies are gonna bully. If there's no disability, it'll be something else ... like the color and cut of a dress. The reason this matters is that it calls into question how useful increasing "disability awareness" really is. I can easily imagine high school students who would never make fun of a fellow student's wheelchair, but see no contradiction in mercilessly teasing the same student's hair, shoes, or accent. Kids and teens are very good at missing the point.

What exactly do we need to be Aware of?

Disabilitybusters - October 9, 2015

I am generally on board with “disability awareness” skepticism (see above). I also prefer discussing policy more than the human relations stuff. However, while I agree with what’s in this article, the way the way the awareness vs. issues conflict is framed here a little too stark. Sometimes, “awareness” does fool us into thinking we are doing something, while it distracts us from dealing with more “substantive” disability-related problems. I don’t think it’s usually a deliberate dodge though, and understanding something about the disability experience can help keep policy discussions on track.

It’s time we dispelled these myths about autism

Steve Silberman, BBC Future - October 6, 2015

There can't be enough articles, interviews, and reviews of Steve Silberman's book about neurodiversity and the massive mischaracterization of autism.

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Weekly Reading List

For this week’s list, I picked 5 excellent pieces that I would describe as “Disability 101.” They don’t break any new ground or dig deep into disability culture, but together they would make a good introduction to modern disability life and thinking.

Access issues persist for disabled

Elizabeth Cooney, The Boston Globe - October 5, 2015

This article covers just about all of the main concepts required to understand what “accessibility” is really about. It’s not just a bunch of obscure, nit-picky regulations. Each rule and each measurement standard relates directly to how disabled people live, and have a direct affect on whether or not we can get around in our own neighborhoods, towns, and cities.

Five Questions to Stop Asking Wheelchair Users Immediately (and What You Can Ask Instead!)

Karin Hitselberger, Claiming Crip - October 1, 2015

There are lots of disability etiquette lists out there, covering pretty much the same things. What makes this one notable is that Karin offers “dos” for each one of her “don’ts.” I think that’s something we forget to do much too often.

Emergencies Should Not Come Down to Survival of the Fittest

Emily Ladau, The Disability Dialog - October 2, 2015

Emily does two very important things here. She raises the very difficult and extremely important issue of what happens to disabled people in personal and public emergencies. In doing so, she also underscores the fact that disabled people, ourselves, are equally responsible for planning emergency response, or failing to do so.

Able cause: meet the champion of Britain’s disabled drivers

Andrew English, The Telegraph - October 2, 2015

At first I didn’t quite understand what this woman does, but when I finally got it, I was fascinated. It seems there’s a program in the UK that gives disabled people some kind of allowance specifically for transportation. You can use the money to pay bus fares, subway rides, or a driver. Or, you can use the funds to help buy or modify a car to make it drivable. Obviously, the amount of the allowance is crucial, and I wonder if you can choose to save up the allowance for a bigger purchase. But the model sounds great because each person can decide how to use the funds in a way that works best for them.

Teenage Years and CP

Alexander Presthus, CP Experience - September 30, 2015

Boy, did I nod my head a lot while reading this! Even though Alex focuses on Cerebral Palsy, what he says here I think is totally valid for youth with all kinds of disabilities. Parents of disabled kids should read this blog, too.

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Weekly Reading List

Slave Wages for the Disabled

Elizabeth Picciuto, The Daily Beast - September 23, 2015

(Almost) Everything You Need to Know About Sheltered Workshops: Part 1

(Almost) Everything You Need to Know About Sheltered Workshops: Part 2

Ari Ne’eman, Sometimes A Lion - September 20 & 26, 2015

Lawsuit leads to regular jobs for people with disabilities

Kathleen McLaughlin, SF Gate - September 26, 2015

States Work to Help People With Disabilities Find Work

Sophie Quinton, The Pew Charitable Trusts / Stateline - September 17, 2015

All 5 articles deal with employment of disabled people, in particular, the increasingly outdated practice of routing them into lesser, lower-paid, “sheltered” employment. This is a foundational issue for the disability rights movement. It’s also a sort of litmus test for service providers and others who want to be our allies. Are they willing to recognize that yesterday’s way of doing things … though maybe the best we could do at the time … may not be acceptable anymore? Can they turn their back on familiar ideas and assumptions, and embrace a new outlook? It’s not as easy as it sounds in a blog post, but it is essential.

Plus, as Ari Ne’eman points out, disabled people, too, need to take a leap now and then, and we don’t always step up and do it right away.

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Weekly Reading List

I read some things last week ...

Anti-vaxxers like Trump aren't just wrong: they promote bigotry toward people with autism

Dylan Matthews, Vox.com - September 17, 2015

Dylan Matthews continues to do great and necessary work on autism at Vox.com. He is autistic, and has written at least one other major piece for Vox explaining the neurodiversity view of autism. I also found a short article he wrote 3 years ago for the Autistic Self Advocacy Network. The best thing about this is that Vox isn't a publication about disability, and Matthews usually writes about other things. So although the subject is important to him, he has both an insider and outsider voice, interested, but objective. Of course, it helps that there is the new book Neurotribes for him to write about, and presidential candidates to say stupid things about autism as well.

Leaving NCD: Accomplishments and Disappointments from Five Years of Public Service

Ari Ne’eman, Sometimes a Lion - September 17, 2015

(Almost) Everything You Need to Know About Sheltered Workshops (Part 1 of 2)

Ari Ne’eman, Sometimes a Lion - September 20, 2015

Speaking of autistic voices being crystal clear on difficult topics, Ari Ne'eman has started a blog. He is the Director of the Autistic Self Advocacy Network, and has just finished a term on the National Council on Disability. His first two posts are complex and wonkish, but also quite readable. Everyone interested in disability issues in public policy is probably going to love Sometimes a Lion.

Disability and the Five Temperaments Part 3a: Miscellaneous Observations and Discussion

FlutistPride’s Blog - September 15, 2015

FlutistPride is a frequent commenter here at Disability Thinking. She mentioned working on a series of posts on the "Five Temperaments" but I wasn't sure what she meant by "Five Temperaments," and it took me awhile to get around to reading the posts. I am so glad I finally did. The descriptions of each "temperament" are so accurate and relateable they're spooky. I mean that in a good way, though there may be moments of discomfort here, for disabled people, family, or service providers. I guess you could say this is a trigger warning. You may feel like one or two of your deepest secrets has been found out, or that some habits of yours you thought were utterly baffling and unique turn out to be pretty simple and predictable. But do read. It's all worth thinking about.

I Grew Up Not Talking About My Disability. I Want to Change That for Others

Helen Rutherford, The Mighty - September 15, 2015

I'm glad this article appears in The Mighty, which seems to skew heavily towards readers who are parents of disabled children. I'm glad, because Rutherford's message is as important to parents as it is to adults with disabilities. Disabled youth need disabled role modes. Also, just because a disabled child or teen seems happy and well-adjusted, doesn't mean they actually are. This is one reason why so many of us balk at images of disability that emphasize how brave, cute, or cheerful disabled people are. We get the mistaken message that in order to be accepted, we have to be happy and low-maintenance. It's an understandable confusion, with really unfortunate and unnecessary effects that parents can do a lot to prevent.

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Weekly Reading List

Sometimes it’s good to take a break from the policy monkery and identity navel-gazing, and revisit the fundamentals of life with disabilities.

Asking for Help: 3 Tips

Alex Ghenis, New Mobility - September 11, 2015

When I first saw this article, I expected either a lesson in politeness or a scolding of disabled people who are too proud to ask for help. Instead, Ghenis effectively balances the practicality of asking for help in a pinch, with recognition that pride and independent accessibility are still important. I especially appreciated the idea that “Respectful Thanks” means both respect for the person who helped you, and also for yourself.

Why We Need to Reshape What It Means to Be a Person With a Disability

Hannah Zack, Huffington Post - September 4, 2015

This young woman has a better grasp on how she feels about her disability than I did until much later in my life. Even so, it’s hard to identify how her experiences match up with her suggestion. Her encounters with ableism seem to involve very specific misconceptions, while she attributes all of it to a very broad devaluation of disabled people that she says must change. I agree with her, but I get the feeling people will continue to do and say annoying things, even if they think better of us. It’s all a work in progress.

Five things I've learnt watching football as a disabled fan

Rob Crossman, The Telegraph - September 15, 2015

I enjoyed getting a taste of English football culture … which seems to be fundamentally different from other sports fandoms. But the real reason I posted this article here is item 5. People still question whether “ableism” is real, just as others unfortunately also doubt the current relevance of “racism.” If anyone tries to tell you that disabled people aren’t systematically treated like a different species, ask them to explain why sports mascots and other giant costume characters glom onto disabled people at every opportunity. And don’t say it’s harmless. It’s certainly a lot better than a beating, or losing a job opportunity, but let’s not underestimate the power of public humiliation, okay?

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Weekly Reading List

What Was the Telethon?

Kevin Gotkin, Medium.com - September 5, 2015

Brilliant article on telethons, what they did and what they meant. I look forward to Paul Longmore's book. I am especially curious to see if he discusses how other cultural factors contributed to making the telethon the way it was. For instance, I wonder if the exclusive focus on research and cures might have been partly a result of Jerry Lewis' generation seeing so many truly dread illnesses successfully cured by scientists. For awhile there, it seemed like we could cure anything. Also, Jerry Lewis came out of a very specific tribe of entertainers who in the peak years of the telethon gave it a certain Vegas-y, Rat-Pack-ish, tough-guy sentimentality. The Labor Day Telethon always felt like a swanky, boozy charity event bankrolled by a mobster. In short, it was kind of gross and creepy, quite aside the insulting way it talked about disability and disabled people.

We've called autism a disease for decades. We were wrong.

Dylan Matthews, Vox.com - August 31, 2015

Dylan Matthews interviews Steve Silberman, author of the new book, NeuroTribes: The Legacy of Autism and the Future of Nerodiversity. Matthews is autistic, which he has occasionally mentioned before in his Vox.com articles. Vox.com itself is a general interest news website that specializes in "explainer" journalism, with an emphasis on making complex and obscure issues understandable. It has also been a strong champion of debunking popular myths and prejudices through careful, objective examination of data. That's one of the reasons I think this article, in this publication, is so important. Vox.com doesn't endorse "fringe" theories just to be trendy or make people feel good, so it lends further credibility to the neurodiversity understanding of autism. Of course, Matthews' own experience lends considerable credibility as well.

Does Down Syndrome Justify Abortion?

Mark Lawrence-Schrad, New York Times - September 4, 2015

This article provides a pretty good map of how the ethics and rhetorics of abortion and disability intersect and intertwine in complicated, often unpredictable ways. Two things in the article stand out to me. First, I am not surprised but I am very discouraged that Lawrence-Schrad and his wife's doctors responded to their decision follow through on the birth of their Down Syndrome child with “raised eyebrows.” He doesn’t say anyone actively tried to talk them out of it, or talk them into an abortion, but total neutrality is the lesson I first learned from talking to pro-choice people. Pro-choice people just aren't supposed to encourage people to have abortions, or not to have them. The second thing I come away with is that we need better education about disabilities for maternity professionals. I mean life with disabilities, not just the medical details of disabilities themselves.

Helping struggling seniors and disabled

Timothy Canova - August 30, 2015

For years, politicians of both major parties have spoken as if it was obvious that reducing or limiting entitlements like Social Security has to happen. Recently, however, a growing number of economists and even a few politicians have been suggesting that maybe we need to increase Social Security. Expensive though it may be, Social Security also delivers a lot for the money. For one thing, it has virtually eliminated extreme poverty among the elderly. And while we justifiably complain about how meager and limited life can be for disabled people on Disability or SSI, I think we all realize that without these benefits, the our poverty rates and the intensity of our suffering would be much, much worse than they are. The Miami Herald's proposals here aren't that dramatic, but it's notable to see a mainstream newspaper openly endorsing measures that would increase, not reduce the cost of entitlements ... because doing so might just be necessary to avert a true economic and human disaster. It's never been particularly cool in the disability activist community to campaign for more benefits. We tend to prefer fighting for civil rights and other supports partly on the assumption that our greater independence will save everyone money. I still think that's true to an extent, but I am starting to think we may need to gear up to fight for basic support pretty soon. And teaming up with seniors might be a good idea, too.

Tories promise improved disability grant amid turmoil over urinating candidate

The Canadian Press / The Globe And Mail - September 7, 2015

It’s interesting as an American to read about disability policy in the Canadian elections. I wish the article was more informative. I’d like to know more about this Disability Savings Grant. It sounds like a characteristically conservative benefit program that says, “If you have money, we will allow you to save it tax-free.” However, the article doesn’t explain the program much. I also noted that none of the comments are about the policy, because nobody knows a thing about disability policy. Okay, there’s also that unrelated peeing in a cup thing which I guess is much more fun to comment about. But still, doesn't anyone have a anything to say about the Prime Minister’s proposal or the program it relates to?

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