Weekly Reading List

/

Five more good things about disability I read last week …

Escaping The Disability Trap
Alia Wong, The Atlantic - June 15, 2016

The Atlantic has been publishing some good disability articles lately. This one gives a little too much credence for my taste to the idea of returning to some degree of Special Ed segregation. However, it does credit to all sides of the perpetual debates over the goals and methods of Special Education. It seems to me that a key problem is that “education” and “preparation for paid jobs” aren’t the same thing, but are typically dumped together into the same activity, location, and personnel. At a certain limited stage of secondary school or young adulthood, specific work-related training in partially self-contained environments might be a good idea. But social and physical segregation of disabled students away from non-disabled peers is terrible for their more broadly defined education. Also, it’s a real problem when mainstream programs of any kind do inclusion badly, and the response is to basically relieve them of the responsibility to include, by re-creating these segregated, “specialized” programs. I understand that parents have to put their children’s needs first, but at some point we have to stop rewarding bad institutional behavior. And the racial disparity is disgusting. In my area, the same sort of thing goes on class-wise, too. It’s kids from poor, “low-class” families who seemed to be more quickly shunted off to Special Ed and purely vocational programs. There’s a lot wrong in education of disabled kids, despite there also being a lot of reasonably good ideas and plenty of reasonably smart, decent people involved.

Pope Francis needs to do more than kiss the disabled
David Perry, Crux - June 14, 2016

I am neither a Catholic nor a Christian, but I grew up in the Presbyterian Church, and I continue to be interested in religion, theology, and religious culture. I agree completely with David’s analysis here. Churches’ traditional response to disability is mostly “medical model.” Yet, I wonder if it’s different enough to warrant formulating a third major model of disability, alongside the Medical Model and Social Model. Maybe call it the Religious Model or Spiritual Model. It’s not very medical, really, and it’s not oriented towards equal access and social justice, either. It’s about a sort of metaphysical, mystical, metaphorical understanding of disability. It’s a habit of thinking about disability and disabled people in abstract, symbolic ways that are foreign both to activists and to doctors and therapists. This is something to think about …

Dear(ly Departed) Julianna
Emily Munson, Emilymunson.com - June 15, 2016

It is heartbreaking that Julianna died. One thing that makes it particularly wretched for the rest of us is that it is so difficult to explain to most people why it’s so terrible that her parents allowed her to refuse treatment for what was probably, in the end, an entirely survivable acute illness. But here Emily Munson provides some fascinating legal background I wasn’t aware of … specifically the “Rule of Sevens,” which either dictates or, I guess, guides when children, teens, and young adults should and shouldn’t be making their own medical care decisions. Using our own lives with disabilities to persuade another disabled person or her family that their lives can be as great as ours, is both a noble endeavor and presumptuous. Yet, to me, the age issue ought to have trumped everything else. A 5 year old should simply not be allowed to refuse medical treatment. I’m not saying nobody under 5 should ever have medical treatment withheld … just that a 5 year old is not mature enough to weigh the pros and cons, especially when most adults can’t seem to grasp that even “severe” disabilities are livable.

‘Finding Dory,’ Disability, and Me
Elizabeth Pucciuto, The Daily Beast, June 19, 2016

Damn. I just basically recommended “Finding Dory” to a friend with disabilities, because of the good disability themes I had heard about. It sounds as if it might be another case of the gulf between author’s (possible) intent and audiences’ (actual) reaction. As long as the proper signals are given and others obscured or muted just right, people still assume it’s fine to make fun of intellectually disabled people. So even in a film apparently intended on at least one level to deliver a progressive portrayal of some disabilities, it’s fine to play others for laughs. I guess that’s still the way it is now. Ableism is real, ‘y’all, and it is literally everywhere.

Growing Up Disabled
Jessica and Lianna, The Disabled Life - May 23, 2016

I really only included this cartoon in order to introduce the Tumblr site it’s on. It’s also got a Twitter feed as well. Jessica and Lianna are sisters who both have physical disabilities, and create these fantastic cartoons about what it’s like to be young, disabled women. They remind me just a bit of the work of John Callahan, one of my earliest Disability Culture influences.

Weekly Wrap-Up

/

Disability Blogger Link-Up

/
Illustration of a grey computer keyboard with a red wheelchair symbol on the center key

It’s Disability Blogger Link-Up time!

If you’re new here, the idea is to collect lots of really good, interesting pieces of writing on disability topics, for the most part by people with disabilities. I post a linkup every other weekend, and each runs from late morning on Friday and closes at Midnight on Sunday. Once a linkup is closed, you can’t post to it anymore, but the links all stay active, essentially forever. If you miss one linkup, there will be a new one in a couple of weeks.

If you like, browse all the past Disability Blogger Link-Ups here.

As always, to make the links easier for visitors to browse, in the “Your name” blank, please type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.
Your URL = Link to your article.

Then click the "Enter" button. That's it!

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, July 1, 2016.

Throwback Thursday

/

One year ago in Disability Thinking: Diagramming Disability Issues

I was going to try to place the top five disability issues and disability policy proposals from the #CripTheVote survey into this disability issues mapping tool I whipped up last year. The map / chart / thingy has two scales that intersect to form a big square with a plus sign in the middle … Low Stakes to High Stakes on the horizontal, Rights to Benefits on the vertical. When I tried placing these issues and policy ideas, I found I that I need another measurement scale … something like Disabled to Non-Disabled. It would measure how much the issue or idea is led or initiated by disabled people themselves, and how much it is led by traditional, non-disabled people and ideas. I haven’t figured out how to graph all of this in one place, and show where all these disability issues are in relation to one another. I’ll do it one of these days. In the meantime, here are the issues I’m trying to map out this way:

Disability Issues

1. Health Care
2. Civil Rights / Discrimination
3. Accessibility
4. Employment
5. Housing

Disability Policy Ideas

1. Hire and appoint more disabled people to government and policy-making positions.
2. Pass the Disability Integration Act to promote independent living instead of nursing homes.
3. Require disability awareness training for law enforcement.
4. Ban payment of sub-minimum wage.
5. Defend Social Security and Medicaid / Medicare against political attacks.

Seeking Recommendations

/

I’m not sure how many people visit the Disability Thinking Links page. I want to update it though, so if you don’t mind, I’d appreciate it if you would have a look at the blogs, websites, and YouTube channels I have listed already, and recommend some you think I should add. I am especially interested in more YouTube “Vlogs” by people with disabilities. Talk to me in the comments!

What, Exactly, Is #CripTheVote?

/
#CripTheVote logo, with title in rainbow colors, and picture of ballot box with four disability symbols on the front

I’m working on a thing today, so here is a terrific video presentation by Alice Wong about #CripTheVote. She explains what #CripTheVote is, our goals for starting it, and how it works. You also catch a look at my mug and Gregg Beratan’s

I forget sometimes that at lot of people think Twitter is either silly or nasty, and that others take a dim view of online “slacktivism” in general. I understand why, I guess, but it seems to me that Twitter and other social media are perfect for activism that mainly is about fostering a conversation. It also encourages political participation among people who may not have the ability or resources to do physically taxing, in-person activism.

I’m prejudices of course, but #CripTheVote has been fun so far, and the election conversations have been a lot more civil and substantive than what’s been happening elsewhere. If you haven’t already … even if you think you’re not “into politics” … check #CripTheVote out.

Weekly Reading List: Air Travel Edition

/

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

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

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

All Wheels Up, Inc.

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

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

There are probably several reasons for this.

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

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

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

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

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

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

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

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

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

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

Birthday Break

/

I'm going to skip posting today, (except for this), and tomorrow. I'll be back Monday with a Weekly Reading List. By the way, if you click the link here you can see all of the Weekly Reading Lists.

I don't do much to celebrate my birthdays, but removing one more item off my daily to-do list for a couple of days feels like a nice treat. I love blogging, but I don't always love coming up with new things to say, so ...

What “Girls” Does Better Than “Me Before You”

/
TV still image of a middle aged blonde woman sitting in a wheelchair, talking and gesturing

After weeks of reading and participating a bit in discussions about “Me Before You,” (the book and the movie), and its severely problematic view of disability in general and assisted suicide specifically … after engaging with this for so long, I only remembered yesterday that a recent TV show told a somewhat similar story, with a lot more depth and a much different outcome.

*Spoilers ahead!*

I did a Disability.TV Podcast episode last year about a storyline on HBO’s “Girls,” in which one of the main characters, Jessa, becomes a personal assistant for a woman named Beedie, an older, successful art photographer who uses a wheelchair. I’m not sure, but I think the Beedie has Multiple Sclerosis. After awhile working with and getting to know Jessa, Beedie says she wants to die and asks Jessa to obtain the necessary drugs. As in “Me Before You,” her reasons are a bit sketchy. She mentions pain, but has shown little evidence of it interfering with her life. By most objective measures, even factoring in her disability, Beedie has a good life. As does Will in “Me Before You.”

Anyway, Jessa objects to being asked to help Beedie kill herself. Jesse’s objections carry real conviction, but in the end she respects Beedie’s “choice.” She gets the drugs, and seems resolved to sit by Beedie’s bedside and hold her hand as she dies. At the last minute, though, Beedie cries out that she’s changed her mind, and Jessa basically leaps across the bed to the phone to call 911.

Some time later … days? weeks? … Beedie’s daughter shows up, pissed as all Hell about what happened, certainly very angry with Jessa, this random hippie chick her mother hired to take care of her. She’s determined to bring her mother Beedie home with her and take care of her herself. Again, Jessa objects, and is ready to fight for Beedie’s right to live where she wants and do what she wants. She also can tell, as we can, too, that while Beedie’s daughter is basically right about the suicide attempt and Jessa’s role in it, she is also a royal pain and a control freak who will take over Beedie’s life if she’s allowed, and make her miserable. Yet, Beedie lovingly but firmly calms Jessa down and says she’ll go with her daughter.

It’s far from a satisfying ending, but throughout the story, you really get a sense that Beedie is a strong person who goes through a crisis, and is willing to make difficult choices, but will never really lose control or self-respect.

This “Girls” story doesn’t have a clear anti-assisted suicide message, or a pro one either. It’s all ambiguity. Yet, Beedie decides to live, which makes it 100% less harmful than “Me Before You.” I also think the “Girls” story correctly links the appeal for some of assisted suicide, with the importance of choice in the lives of people with disabilities. The links are a bit tangled, but they are there. Plus, Beedie and Jessa are much more real, complex, relatable characters than Will and Lou seem to be, by far … and sketched out in a fraction of the time, in literally a handful of scenes over two half-hour TV episodes.

Assisted suicide doesn’t have to be a pop culture taboo. It can be discussed in a realistic and life-affirming way … or at least a non-death-affirming way. It can be done. It has been done.

Throwback Thursday

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

Three years ago in Disability Thinking: Disability In The News

I still have my Google News page set to give me articles related to “disability” and “disabled,” but I’m pretty sure the tone and content of the articles I see have changed since 2013. Anecdotally, it feels like the most common themes now are:

* Disability activists’ reactions to depictions of disability in news and pop culture.
* Disabled people getting involved in the elections.
* The pros and cons of reforming and transforming various kinds of disability services

There are still always stories about shocking abuses and heartwarming acts of individual kindness, but they don’t seem to dominate “disability news” the way they used to. In the meantime, the more progressive, disability-centered sides of these discussions are usually present, if not in a story itself, then soon after.

So, based on my entirely unscientific personal survey, I think that the coverage of disability issues is significantly better now than it was three years ago.