Monday, January 20, 2014
Is It Okay To Call Myself “Disabled”?
Lately I’ve been seeing a lot of angst on disability and chronic illness blogs about what people can and can’t call themselves … what groups they should and shouldn't claim membership in. Part of it is people wanting to get it right, and part of it is that people seem unduly worried about some anticipated shaming should they get it “wrong”.
I’m not sure what happened. Maybe people have been burned in comments sections or Tumblr discussions. Maybe our college diversity programs and disability studies departments have educated people just enough for them to be scared to death, but not enough to carry on a safe, respectful, open discussion. I feel like people need to take a breath or two and relax a bit about labels and group membership or classification.
Emotionally, my advice is: Calm down fer fucksake!
Having unburdened myself of that, here are a few more thoughts that I hope might be useful or at least not harmful:
Most of the people I’m referring to here have some kind of “conditions” … physical, mental, or both … that they think might “count” as a disability or as a chronic illness.
They don’t want to claim either label inappropriately, because it will be perceived as “appropriating” another group’s identity, which is viewed as terribly insulting and deeply embarrassing when called out.
People are aware of this concept of “privilege”, which seem to some people like another rhetorical land mine that could blow up at any minute, if someone perceives that their problems and barriers are just way less significant than their social or economic advantages.
They may also be naturally, internally doubtful about whether they really want to think of themselves and identify themselves as “disabled” or “chronically ill”. If you are at a stage where you are seriously wondering if you belong to one of these groups, then you haven’t yet crossed that line, and crossing it on purpose is a big deal. It can be an enormous relief, or it can feel like an admission of defeat.
All of this would suggest that maybe there are no legitimate concerns at all about privilege, appropriation, or inappropriate labeling. The problem is, there are people who are truly on the wrong track regarding what disability and chronic illness are. Some have interesting but ultimately empty theories about how “everyone has some kind of disability”. Others have an agenda to expose posers, or debunk whole categories of disability. So, there is some justification for those of us who are disabled or chronically ill to be at least somewhat vigilant about the terms of these identities.
On the other hand, it’s hard and unfair to be too vigilant. The entire subject of physical and mental impairments or conditions is messy and full of gray areas. There are few, if any sharp distinctions or usable rules to determine who is or isn’t “disabled” or “chronically ill” or “a spoonie” or whatever.
If we want people to accept us on our own terms, we ought to be prepared to accept other people on theirs, even at the risk of misjudging people or situations from time to time.
There ARE, however, some common-sense boundaries between conditions that put a person in one or more of these groups, and those that are just personal attributes. One good question to ask is whether the condition you are looking has a large influence on your day to day life. Do you have to think about it and plan around it every day, or several times a week? Do you have to do things differently from most people because of the condition? If so, then it may very reasonably be called a disability or chronic illness.
No matter what your conditions are, how you label them or yourself is, in the end, up to you. People are free to agree or disagree with your decision. Some may even be angry or aggressive in trying to persuade you to see it their way, or to make you feel bad about your interpretation. But it’s up to you, provided you are at least in the ballpark, using a common-sense perspective as described above.
In the meantime, try to listen to everything people say, check yourself for personal agendas and prejudices, don’t take things too personally, and don’t be afraid to say what you want to say … and ask what you feel you need to ask.
Sunday, January 19, 2014
Powerful, On-Topic Music Video
I saw this on AmputeeOT’s Facebook page. Really beautiful and powerful.
P.S.: I'm a bit slow on the uptake with some kinds of music, so it took me a little bit to figure out that this is a home-made lip-sync video of a song by Pink. I'm even more impressed.
P.P.S.: The young woman in the video is Krystal, and she has some other good videos on her YouTube site about her below knee prosthetic.
Website Changes
- I added my picture and rewrote the blog description, both of which you’ll find a the top of the right-hand column.
- I cleaned up and updated my list of Disability Blogs, found lower down in the right-hand column.
- Tabs at the top of the blog, just under the title banner, for my other pages, including an About Me page, and the beginnings of a list of Resources on disability-related issues. Also, you will find collections of all the disability-related Video and Photos I’ve posted, with links to original sources where applicable.
- Please take a few moments to vote in two polls, near the bottom of the right-hand column. One asking how you are connected to disability issues, the other asking what kinds of social media and other Internet services you use regularly. It helps me to have an idea of what my readers are looking for, and whether I should do more with other platforms, like Pinterest, Google+, YouTube, etc.
More changes are probably on the way, because tweaking the settings and adding widgets has become something of a nervous habit. It’s also a nice way to “do something” with the blog when I can’t think of something to write!
Weekly Wrap-Up
Sunday, January 12, 2013
Monday, January 13, 2013
Tuesday, January 14, 2013
Wednesday, January 15, 2014
Thursday, January 16, 2014
Friday, January 17, 2014
Saturday, January 18, 2014
Saturday, January 18, 2014
People Just Don't Know
Michael Wilson, New York Times - January 17, 2014
A disability activist in the heat of the moment might say that both of the things that Frederick Brennan suffered … the robbery and being stranded in a snowstorm … were crimes. I don’t think that would be quite right. However, I really wonder which of these two misfortunes was more harmful to Mr. Brennan. That might be too close to call.
The article reinforces what I think is a very major theme in everyday ableism. People just don’t understand the logistics of living with disabilities. My guess is that it never occurred to the police involved that getting to their station and back might be extremely difficult … or perhaps impossible … for a guy in an electric wheelchair. I’ll bet that when the officer called for the bus, he figured his job was done … not realizing how often lift-equipped buses are late or never come. Not realizing that an immediate response accessible transit vehicle is basically a unicorn, especially in New York City. And if he didn’t make those mental connections, then he didn’t have a chance to wonder if a young man, new to the City, might be extra vulnerable when that City was in the midst of an epic snowstorm.
By the way, I found the comment from Mr. Brennan’s boss interesting. There’s a blame-the-victim tone to what he said about Mr. Brennan being unwilling to ask for help. Underlying the comment is another common, and faulty assumption … that there is always help available and ready to serve, we just have to ask for it. Sometimes that’s true, and a lot of us do probably wait too long before asking. But just as often, asking for help results in bewilderment and sudden bouts of catastrophic incompetence, in which cases we are no better off logistically, and twice as pissed off.
Most of the modern, western world still doesn’t know how to deal with significantly disabled people. That’s a fact of life for us, and a fact that most people don’t really realize.
Disability On Downton Abbey … Nerdy Followup
A week ago, I posted about the different ways that the hit TV show “Downton Abbey” uses and depicts characters with disabilities. I’m happy to say that the piece got me my very first “Internet Honor”. I am now, officially, “Cousin Andrew”.
You see, at least half of my enjoyment of “Downton Abbey” comes not from watching the show, but from listening to a podcast about the show after each episode. The podcast is “Up Yours, Downstairs” - [Facebook Page]. As the name suggests, husband and wife podcasters Tom Schneider and Kelly Annaken love the show, but have a keen appreciation for how ridiculous it can be. So, their episode recaps are very snarky, and tons of fun. That said, at the right times … like what happened to Anna in last week’s episode … Kelly and Tom’s emotional responses are very real and heartfelt. It’s a great combination.
Kelly and Tom refer to their listeners, collectively, as “Cousins”, because of the important role that Cousins have played in the plots of “Downton Abbey”. At the start of each podcast, they read “Telegrams” (emails) and “Carrier Pigeons” (Tweets) from “The Cousins”, and name one of the writers “Cousin Of The Week”. After I posted about “Downton Abbey”, I Tweeted about it to Kelly and Tom (@5maggiesmiths). They, in turn, talked about it on their next podcast, and gave a very kind endorsement … concluding by naming me, “Cousin Of The Week”.
It’s a silly thing, but as a longtime listener and “Downton Abbey” fan, I was thrilled.
By the way, Kelly and Tom have occasionally made some astute comments themselves on the disability aspects of “Downton”. Most memorably, in their very first podcast, recapping the very first “Downton” episode, they commented that the naked prejudice against Bates’ disability demonstrated the need for the Americans with Disabilities Act. I was impressed that they, a. knew about the ADA, and b. made the right kind of connection with one of the least understood parts of the ADA, the employment discrimination sections.
So, cheers to Kelly and Tom, from Cousin Andrew.
The Derrick Coleman Duracell Ad
I’m sure all you football fans have seen this ad dozens of times already. My high school friends in Washington State probably know it backwards and forwards at this point! But do read this great discussion of why and how this is such a rare and valuable exercise in disability awareness:
Rachel Cohen-Rottenberg, Disability and Representation - January 17, 2014
For myself, I just want to underscore how brilliant and crucial it is that Colman first identifies his disability not as a hearing impairment, but as other peoples' inability to communicate with him.
For myself, I just want to underscore how brilliant and crucial it is that Colman first identifies his disability not as a hearing impairment, but as other peoples' inability to communicate with him.
Friday, January 17, 2014
Thursday, January 16, 2014
Customization!
Roc Morin, The Atlantic - January 15, 2014
"With these prostheses, Sophie enables her customers to conceal their absences and blend in. But the artist also caters to another kind of clientele: amputees wanting to stand out.”
There is definitely something important about disabled people who think to “trick out” their adaptive gear … their prosthetic limbs, their crutches, their braces, their wheelchairs. After visiting dozens of websites and blogs per day for over a year, I get the sense that it’s mostly people who would be into tattoos and brightly dyed hair whether they were disabled or not. What I really wonder is whether it works at all to encourage people new to disability to think about personalizing their stuff. This could be adults who become disabled and are in the early to mid rehabilitation process, or kids and teenagers with visible disabilities who might be agonizing over the stigma of being different. Customizing adaptive equipment can be a tremendously liberating thing, giving people a way to embrace their disability and make it a coherent part of who they are … not some foreign addition at odds with their self-perception.
Wednesday, January 15, 2014
Nothing Is Worse
Lynn Arditi and Linda Borg, Providence Journal - January 15, 2014
Fuck this shit.
I don’t think there’s any aspect of the disability rights / disability policy world that makes me angrier than when people with developmental disabilities are herded like cattle into sheltered workshops and “day programs”, where they either waste away on entirely useless, easily managed pursuits, or help produce products that actually are sold in the real economy, while making sub-minimum wage.
Look, it’s entirely true that just because a disabled person is capable of performing a job, doesn’t mean a job can always be arranged for him or her. But in theory, nobody in our cutthroat economy has as much individual support and coaching available to them than people with developmental disabilities. Yet, so often that help is, in fact, theoretical. Why that is, I still don’t know, and I’ve been observing it … admittedly on the margins … for over 20 years.
In some ways, it’s too bad it takes a Justice Department Civil Rights ruling to shake up these complacent setups. Better ideas and better practices are all out there, in full and effective use. All these musty institutions have to do is embrace them. On the other hand, since change doesn’t seem forthcoming through other avenues, I’m extremely grateful that the U.S. Justice Department is pursuing these cases aggressively.
It can’t happen soon enough.
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