Weekly Reading List: Children & Youth Edition

A lot of my disability reading this week had to do with kids ...

Beating of Disabled Teenager Highlights a Crime That Often Goes Unpunished
By Mitch Smith and Richard Pérez-Pena, New York Times - January 6, 2017

Whenever another case of horrific individual cruelty against a disabled person comes to light, my first instinct is to want to put it into context. And I don't mean mitigating context. In cases like this, I mean remembering that these situations and acts aren't super-rare, and the youths who did it aren't evil unicorns. They reflect fairly common ableism that's usually muffled by layers of social norms that these kids apparently lacked or rejected, on that day, for a hundred reasons we'll probably never really know. Like many other disabled people whose comments I've read, I am just as upset that this case got so much attention mainly because white supremacy apologists and racism deniers hyped it for their own purposes. It's all a fucking mess.

The Life of a Disabled Child, From Taunts to Hate Crimes
Margaret Carlson, New York Times - January 6, 2017

This is hard to read because there's a lot of disability thinking in it that is just past expiration date. Veteran NYT columnist Margaret Carlson is on the right side of things here, and she's sincere. But once again the actual disabled person, in this case her brother, appears as an abstraction, and her concept of systemic progress is a decade or two old. Still, I'm glad she chose to add her thoughts and experiences to the conversation.

What About Dignity and Respect? When Our Disability Attitudes Fail Us
Ellen Stumbo - January 6, 2017

I keep meaning to go back and try to say something useful about the conflict, (maybe disconnect is a better word for it), between "Special Needs Parents" and disabled adults. Ellen Stumbo makes an incredibly moving and helpful contribution here. Her courage to be self-critical suggests that maybe it's time for a disabled adult to write something that endorses what she says here, but also questions some of the stridency and self-righteousness we often convey when we write about the tone and practices of disabled kids' parents.

Schools Get Guidance On Restraint, Seclusion
Michelle Diament, Disability Scoop - January 6, 2017

I only hope that all this effort by the Education Department doesn't get flushed in the first 100 days of the Trump Administration, during some kind of "clean sweep" of "regulations and mandates." On the bright side, you can reverse laws and eliminate regulations, but you can't as easily suppress good ideas. Once spoken and documented, continue to exist regardless.

Three Tips to Make Classrooms Mobility Device Friendly
Zachary Fenell, Think Inclusive - July 9, 2016

What I love about this article from last summer is that the advice in it comes from disabled adults who were asked to suggest ways to make school better for disabled kids. While we obviously don't have all the answers ... and our perspectives can become skewed by either nostalgia or trauma ... we have been there, and as adults we have the tools to interpret our experiences the way many kids can't yet for themselves. It is truly surprising how seldom disabled adults are asked to weigh in on how best to raise, nurture, and educate disabled kids.

Disability Podcasts ... Updated

It’s been awhile since I posted about disability podcasting. That’s partially because there is still surprisingly little of it out there. What I mean by “little of it out there” is that there are few podcasts by disabled people posting episodes regularly. My own podcast’s checkered, inconsistent history is a good example. I also get the feeling that the same creative impulse that prompts people to do audio podcasts is being channeled more into making YouTube videos. Still, there are a couple of newish disability-themed podcasts I listen to that are worth your time.

The Accessible Stall

Emily Ladau and Kyle Khachadurian are friends who have different disabilities, and subtly different ways of thinking about disability and disability issues. Actually, sometimes the difference isn’t subtle, though their disagreements never become unfriendly. Basically, this is the podcast to listen to if you want to explore the pros and cons of different schools of thought on disability. It sounds serious, and it is in intent, but the dialog itself is fun and surprisingly light. This is a great podcast for anyone in the disability community, but maybe especially for people just beginning to think about disability issues in a deeper way.

In Sickness + Health

I have only just started digging into this podcast’s back catalog, but I’m pretty sure I’m going to learn at lot from it. In Sickness + Health explores what you might call the chronic illness sector of the broader disability community, focusing on how we actually think about and relate to our bodies when they don’t work as designed … or when they actively rebel against us. I tend to gravitate more towards the social, political, and practical aspects of disability culture, yet my own disabilities very much fit into the more medically involved chronic illness zone. So this podcast is probably perfect for me. At the same time, it also seems to do a good job of connecting the very personal physical and emotional aspects of disability with the social and political dimension. Basically, I am very intrigued. I’ll be listening more in the near future.

Note: I am also adding this as an update to a post I did back in August, 2014: Disability Podcasts.

Weekly Reading List

Welcome to the first Weekly Reading List of 2017.

2016 People of the Year: The Resisters
Josie Byzek, New Mobility - January 1, 2016

This is an interesting format for a disability rights news article ... a series of profiles of key individuals involved in a specific issue. Besides that, the public relations fight against the "Me Before You" film was definitely one of the bright spots of 2016, even if the film itself was one of the year's darkest moments for disabled people. And tying it in with other aspects of "better dead than disabled" trends is astute and important.

Defending Health Care in 2017: What Is At Stake in New York State
Families USA Fact Sheet - December, 2016

Whatever happens to health care programs on the federal level, people are probably first going to notice real-life changes in each state, and it's going to play out differently in each one. The sooner we come to grips with that layer of the issue, the better.

Disabled Community Weighs In On Ride Sharing
Dave Lucas, WAMC Northeast Public Radio - December 29, 2016

I have to admit that I'm not sure myself how feasible it is for services like Uber and Lyft to provide equal service to wheelchair users. Guide dogs and providing reasonable personal assistance, absolutely. That should be no problem at all. But a certain segment of the wheelchair using population needs adapted vehicles, and that's a tough thing for a loosely organized group of contractors bound by an iPhone app to provide. What I can't stand though is lawmakers saying that accessibility and equal service are detailed to be worked out later. We know from experience that details are never worked out later. They have to be worked out from the start, no matter how hard it seems.

I had a lump in my breast. So why did the radiologist focus on my disability?
Susan S. Turner, Washington Post - January 1, 2017

I don't mind doctors, nurses, and medical technicians being curious about my disability. Within reason, I am happy to "educate" them. I think what we're all looking for is a modicum of courtesy and self-awareness, along with a recognition that our disabilities aren't always at the center of our medical problems. Sometimes, disabled people are just plain sick.

Tips for Creating a Home for Aging Owners
Kaya Laterman, New York Times - December 30, 2016

It's good to see a high-quality article in the New York Times on making homes accessible, and the aging connection is obvious. I just wish there wasn't still such a divide between articles on "aging in place" and articles on "accessibility for the disabled." They call for the same steps, even if they aren't exactly the same topic.

Top Ten Posts of 2016

Inspired by a New Year’s Eve Top Ten post by fellow disability blogger Vilissa Thompson, here are the Top Ten posts of 2016 here at Disability Thinking:

10. Three Threats To Disabled People Today
July 6, 2016

9. Independence Day
July 4, 2016

8. What's The Problem?
September 27, 2016

7. I Used To Think ...
August 16, 2016

6. Looking Ahead To The 2016 Paralympics
July 5, 2016

5. Growth Attenuation
March 25, 2016

4. Disputing "Ableism"
January 22, 2016

3. #CripTheVote: Notes On "Crip"
March 29, 2016

2. Weekly Reading List, March 28
March 28, 2016

1. Disability Etiquette In 3 Questions
August 6, 2016

Disability Blogging Resoultions

A blog post by my favorite political blogger had the exact opposite of its intended effect on me. It has encouraged me to blog some New Year's Resolutions. I will, however, try to follow Atrios' advice and set resolutions for myself, rather than sanctimoniously pushing them on others.

Here are my Disability Blogging Resolutions for 2017:

1. I will maintain a consistent weekly and monthly schedule.

This means posting a Weekly Reading List every Monday, a regular blog post on some disability topic every Friday or Saturday, a Disability Blogger Linkup the second Friday of each month, a Monthly Wrap-Up once a month, and an occasional Throwback Thursday repost from the Disability Thinking archives. It’s less than I used to post, but I am busier lately. If I can manage it, quality and consistency at this point is probably better than quantity.

2. I will write more about my own experiences with disability and the evolution of my disability thinking.

To start with I want to do more “I Used To Think …” posts, exploring specific ways my thinking about disability changed from one stage of my life to another. Beyond that, I want to share more about my personal disability experiences, and bring those experiences to bear more often in posts about current disability issues and culture.

3. I will make my writing about disability issues and activism more accessible.

To be honest, this one is also a little bit of a suggestion for other disability bloggers too. I think that one probably harmless way we can “reach out” to people who aren’t dialed in to disability issues … both non-disabled people and disconnected disabled people … is to cut down on the activist and sociology jargon, and when we do use it, explain it. There are good, solid reasons to use terms like “ableism,” “intersectionality,” “eugenics,” “erasure,” "inspiration porn," etc. They give names to real-life experiences that are otherwise hard to describe and pinpoint. But, these terms also tend to widen the gap between people who are active in disability issues and culture, and those who aren’t. Often, the crucial difference is education, or lack of it, and integration in a supportive disability community … or the reverse and very common experience of isolation in forest of non-disability. It’s not just terminology. I want to at least try to make what I write informationally and conceptually accessible to people outside the active disability blogging and activist communities. Being mindful about terminology is just one fairly easy place to start. We’ll see how it goes. And I invite readers and fellow bloggers to give it a try, too.

This seems like a doable list of resolutions. Please feel free to hold me to these commitments as the new year progresses!

Weekly Reading List

There's interesting disability stuff to read every week, even during the holidays ...

5 “Quad Tricks” for Managing a Day at Home Solo
Alex Ghenis, New Mobility - December 22, 2016

I'm surprised there aren't more articles like this. In the next few years we are going to have to fight for every hour of home care to prevent a mass return to nursing homes. But being able to manage on your own for a few extra hours can make a big difference when the only practical alternative is total loss of independence.

Getting fuel with a disability: Not as easy as pushing a button
John Hult, Sioux Falls Argus Leader - December 26, 2016

Compare this ADA story with the "60 Minutes" piece on "drive by lawsuits." This local newspaper story starts from a similar place ignorance, but instead of sniffing out perceived corruption, it proceeds with a more open attitude of curiosity: "Shouldn't this thing work better? How is it actually supposed to work? Huh! People are sort of trying, but maybe following the letter of the law isn't enough." It presents a problem but doesn't single out villains, and as a result, it's easier to see the possibility of reasonable solutions and better results.

Love Crimes
Mike Ervin, Smart Ass Cripple - December 18, 2016

All I ever do is gush with praise for Smart Ass Cripple posts, because they usually leave no room for further comment other than to say, "You have to read it." So ... if you have ever given a moment's anguished thought to the phenomenon of parents deliberately killing their disabled child and being treated sympathetically in public perception, then you have to read this.

Individuals with disabilities more likely to be employed in states with expanded Medicaid
Mike Krings, Medical Press - December 22, 2016

I would like to read something about this in a less obscure publication, but I am adding it to my list because it pinpoints something that I think doesn't get enough focused attention. Steady employment is usually viewed as the gold standard way of getting steady health insurance, but the opposite is also true. Stable health insurance is an important key to getting and keeping a good job, especially when you have disabilities.

Becoming Disabled
Michael M. Weinstein, The New Yorker - December 22, 2016

If you are steeped in disability culture and activism already, you might find this personal disability story / review laced with low-grade ableism. Yet, this New Yorker article could function as a good and philosophically accessible introduction to the deeper meanings of disability, both the practical and emotional sides of the experience. I'm glad to see this small trend of disability topics being discussed in relatively sophisticated ways in "higher end" but mainstream publications.

Throwback Thursday

I haven't done one of these in awhile. Here is a short post I wrote two years ago today:

Best Article On The ABLE Act
December 22, 2014

The ABLE Act still prompts head-scratching, and I have yet to meet anyone or read anything by a person who is using it. It still seems like a good thing, and slow implementation of these kinds of things is pretty standard. But I also suspect that most disabled people and affected families don't really know what it is or how it's actually supposed to work, apart from a core group of relatively affluent families who are already pretty familiar with setting up tax-free savings accounts.

Now there's apparently a new law just passed that allows disabled people to set up their own Special Needs Trusts, rather than depending on parents or guardians to do it for them. Like the ABLE Act, Special Needs Trusts are meant to help disabled people accumulate and set aside reserve funds for disability-related needs, without affecting eligibility for basic support benefits like SSI and Medicaid. So, this, too, is a good thing, especially since the new provision is specifically meant to underscore that these things aren't just for caregiving families, they're for self-directing disabled adults, too.

Overhanging all of these helpful steps towards good sense and financial stability, there's a much simpler kind of fix ... simply push back the time limits, earnings limits, or both, by a whole lot. Make it so disabled people don't even start losing benefits they are otherwise qualified for until they're making, like, $70,000 per year. Or, remove the time and income limits completely, and add an income surtax that kicks in at higher incomes for disabled people who use government support and health care. Because any of us could earn big bucks one year, be unemployable next year, and be working half time or a few hours a week the year after that, based on the ups and downs of our disabilities, and other factors. Let us keep the stability of benefits while we build on that base ... and if we do really well, make us pay some back through the IRS, but keep the eligibility going.

Anyway, that's what I would do, if I was in charge of everything.

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.

I Used To Think ...

I have been toying with starting a new post series on how my thinking about disability has changed over the years. Something like this …

During Thursday’s #CripTheVote Twitter chat, a troll spent some time mocking what we were doing. It was mostly standard-brand conservative ridicule of “Social Justice Warriors.” But at one point he identified himself as a “fellow” disabled person, and specifically criticized us for being proud to be disabled. He said he’d never be “‘pathetic enough” to be proud of his disability. I didn’t respond, because I didn’t want to help him derail the conversation, but I wanted to ask, simply, “Why not? Why AREN’T you proud to be disabled?”

I used to think it was really clever and important to view my disabilities as totally separate from me as a person. I completely bought into "person first" language … not because I thought I had to remind people that I was a PERSON with disabilities, but because to me it was critically important that I was a person WITH disabilities. Disability was a “thing” that I “had.” I viewed my disabilities as very real things that affected my life, but insisted that they were sort of like add-ons, discrete attributes, not significant aspects of who I was.

That’s how I thought about disabilities from about age 22 to about four years ago, aged 45. I was fully politicized, understood and supported the Social Model of disability, and by and large felt either positive or neutral about my own disabilities. Yet, the idea of disability as an identity was more of a theoretical construct than a reality for me. I didn’t see the logic of disability identity until I started blogging, and encountered so many people who not only felt that their disabilities WERE integrated parts of their identities, but were adamant about it in an affirmative, even joyful way.

I still don’t think a lot about my own identity. It doesn’t feel that important to me, personally as a topic to puzzle over or crow about. However, I do see now how disabilities have shaped my identity, at least in the sense of my place and profile in society. And I feel like I understand a lot more how important it is for disabled people to embrace their disabilities, not just drily acknowledge them.

In future “I Used To Think …” posts, I will probably write about:

- The time in my life when the LAST THING I wanted to do was work any job related to disabilities.
- When I “discovered” the disability rights movement.
- My changing perspective on diplomacy and assertiveness in disability activism.

I would also love to hear about other peoples’ major changes in their disability thinking.