Throwback Thursday

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Picture of the time machine from the film Time MachineOne year ago in Disability Thinking: Stella Young’s Letters. 

Just a few days after I posted this pice about Stella Young’s “Letters to my younger self” and “Stella Young’s Letter to Herself at 80 Years Old, she passed away. What a loss, and what an emotional week or two it was for a lot of disabled people around the world. It still seems sort of inconceivable that she’s not still blogging, Tweeting, and speaking to us all. 

Two years ago in Disability Thinking: Best Protest Idea Ever. 

This is just  photo worth sharing and re-sharing, that makes a quiet but loud and clear point about accessible parking.

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Disability Day

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United Nations symbol, white lines against a dark blue backgroundToday is the annual United Nations International Day of Persons with Disabilities, which has included a whole slate of UN sponsored speakers and events, and a whole lot of social media activity calling attention to disability as an important identity and issue world-wide. As “day-days” go, it’s definitely a step or two above the scores of semiofficial days commemorating postage stamps, snack foods, and other trivia. This is really A Thing.

This year’s themes for the day are:
  • Making cities inclusive and accessible for all
  • Improving disability data and statistics
  • Including persons with invisible disabilities in society and development
The first thing that came to my mind is the status of the UN Convention on the Rights of Persons with Disabilities. The United States signed the treaty, but the Senate hasn’t ratified it, so our participation in it isn’t actually in effect. Most other countries in the world have fully ratified this disability rights treaty. The United States is in fine company balking at fully endorsing … along with Libya, Chad, Uzbekistan, Kyrgyzstan, and North Korea. A few more Senators should probably get over their bizarre superstitions about UN officials micromanaging parents’ relations with their disabled kids, and ratify the damned treaty already. The United States is the world’s leader in disability rights … it really is. It’s about the last country on Earth that should worry about disability rights being included in international law.

Click Here for a map showing the signatory and ratification status of all participating countries.

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Giving Tuesday

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Picture of a potted plant with a dollar symbol on it being watered by a hand holding a watering can
Today is Giving Tuesday, which I guess is a special day meant to follow the commercialism of Black Friday, Small Business Saturday, and Cyber Monday, by encouraging people to give to charities. It reminded me of a post I wrote in May, about how to choose a disability-related charity:

Disability Thinking - May 13, 2015

I tried in that post to be fairly neutral on what kind of disability work is most valuable, and instead focused on effectiveness and simply being aware of what kind of disability-related goals you want to support. In other words, I didn’t really make any value judgments. Today I’m going to go ahead and talk about what kinds of disability work I value, and why.

There are four main kinds of non-profit disability work I will list them in order of my personal preference.

Advocacy and Policy

- Helping disabled individuals fight discrimination, improve physical accessibility, and navigate bureaucratic barriers.

- Shaping all kinds of policies, regulations, and laws in ways that expand opportunities and make life better for disabled people.

Advocacy and Policy are my top priorities. I believe that most of the problems disabled people face are systemic rather than personal, and that making better policies and practices regarding disabled people does the most long-term good for the most people. It also happens to fit my personality, which is unsentimental and analytical, so I just "like" advocacy and policy wonkery more!

Services and Support

- Helping disabled people solve everyday problems directly and indirectly related to their disabilities.

- Providing disabled people with the financial support, technology, and direct personal assistance to achieve and maintain their independence.

Services and support address individual needs, especially when they are tailored to each person's situation and directed as much as possible by the person using the service. I feel it is important to support these services because individuals should not have to wait for that perfect accessible world in order to enjoy independence and fulfillment. I'm not into fancy, elaborate programs, and I'm dead set against segregated, sheltered ones. But certain basic services, like income support and home care, are massively valuable.

Awareness

- Informing people about disability issues and the experience of living with disabilities.

- Increasing social acceptance and reducing prejudice against disabled people.

Although social acceptance is important, and being treated cruelly because of your disability is terrible, I am skeptical about the effectiveness of most kinds of "disability awareness" campaigns. For one thing, I'm never quite sure what, exactly, people mean by "awareness." Disability awareness campaigns also tend to be rather simplistic, setting too low a bar for what it expects from people.

Medical Research

- Learning more about specific medical conditions that produce disabilities.

- Developing therapies and cures that might lessen or cure disabilities.

I value all kinds of scientific research, and in some cases, better therapies and treatments can improve disabled peoples' everyday lives. Too often, though, the search for a "cure" seems like a boondoggle. The rhetoric for these campaigns is often so negative about disability itself that they actually make it harder for us to achieve social acceptance. Basic research should be funded objectively, not based on who has the saddest stories, the cutest poster child, or the slickest marketing team.

I'll add one more recommendation, which was also in my May blog post ...

There are few more important principles of the disability community than: “Nothing about us without us.” Whenever possible, support disability organizations led by disabled people, with disabled on their boards, and disabled people in upper management and on service-providing staff. If nothing else, you should seriously question the commitment and relevance of a disability organization that resists or downplays inclusion of disabled people in leadership roles.

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Weekly Reading List

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Picture of a multicolored stack of books
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.

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.

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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Disability.TV: Reboot Update

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I am working on the first episode of the new, shorter, rebooted Disability.TV Podcast. It will be on one of my favorite episodes of one of my favorite TV shows, The West Wing, Season 6, Episode 9, “Impact Winter.” It’s a favorite because it includes a few of the best, most truthful, complex, and triumphant senses of disability in all of television. Here’s what Netflix says:

“As Bartlett and his staff arrive in China for a critical meeting, the president is still suffering the paralyzing effects of multiple sclerosis.”

The podcast should be ready to post in mid December. Join me in exploring a President Bartlett's first full encounter with MS.

Here is a tentative podcast schedule for the first half of 2016:

January

The Cage / Menagerie Conundrum 
Season 1, Episode 1, “The Cage”
Season 1, Episode 11 & 12, “The Menagerie, Parts I & 2”

February

Chief Ironside, Peer Counselor 
Season 1, Episode 11, “Light At The End Of The Journey” 

March

Tyrion’s Prison Conversations 
Season 4, Episode 8, “The Mountain and The Viper” 

April

House’s Leg
Season 1, Episode 21, “Three Stories”

May

Character Profile: Mickey Abbott

June

Character Development Instrument
Season 1, Episode 1, “Pilot” 

If you have any thoughts on these or other TV shows with disabled characters, send an email to: apulrang@icloud.com. Or, contact me with Twitter or Facebook. I would love to include

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Weekly Reading List

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

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?

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.

Marissa Stalvey, Curlability - August 6, 2015

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.

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.

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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Disability Blogger Link-Up

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The word Blog surrounded by related words in a word cloud

Oh my goodness, it's time for another Disability Blogger Link-Up! Share a disability-related blog post or article here, any time between Friday, November 20 and Midnight Sunday, November 22, 2015. And of course, read what others have posted. 

To make the links easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the address of the item you are posting. So: 

Name = Title of your article. 

Your URL = Link to your article. 

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

Go ahead and post, read, and enjoy! This Link-Up will close at Midnight Eastern on Sunday. The nextDisability Blogger Link-Up will start Friday, November 20, 2015.


Throwback Thursday

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Picture of the time machine from the film Time Machine
Two years ago in Disability Thinking: “Should I Stay Or Should I Go?”

I still agree with what I said in this post about the dilemmas of advocacy in different situations. Two years later though, I would add one more thought. These kinds of no-win situations we find ourselves in when confronted by unnecessary barriers and ableism are part of ableism itself. We shouldn’t have to agonize over whether to complain when there is real, concrete reason to do so. And one reason we do have to weigh our words so carefully is that we as disabled people are often held to an impossible standard of perfectly calibrated behavior. If we stay quiet, it’s taken as either consent or weakness. If we complain, we are grumpy malcontents or attention-grabbing egomaniacs. If we stay quiet at first, and complain later, well, why didn’t we say anything earlier!?

One year ago in Disability Thinking: Shovel Ready

Our city got closer than I ever thought possible to seriously considering making sidewalk snow and ice removal a city responsibility. It’s interesting that the strongest opposition came from the city employees who would be most responsible if the city did take over the job. I can see how they would want to doge that thankless job. On the other hand, it would expand their dominion, so to speak, and if they did a good job, it would enhance their careers. But that requires an optimistic, activist government point of view, whereas most of Plattsburgh’s top level civil servants seem to have a Ron Swanson* philosophy regarding local government work. So, depending on how the weather actually turns out, it looks like we’ll have another winter of patchy compliance and many more days of disabled people being “snowed in” for no good reason.

* Don’t get me wrong, I adore the Parks & Recreation character. Ron Swanson is a sweetheart of a guy. And some of our city officials are absolutely nice, decent people. I’m talking about their perspective on local government.

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