Saturday, June 21, 2014
Two Takes on Terminology: Supplemental
Here’s an appropriate TED Talk to go with the post below. TED Talks have become kind of annoying, but every now and then a really good, relevant one comes along.
Two Takes on Terminology
Girl With The Cane - June 21, 2014
Smart Ass Cripple - June 19, 2014
At first glance, these two articles on disability terminology seem like they might be very similar. Read them through and you will find they are quite different. And yet, think about it again, and you’ll find they both grapple with the same phenomenon. While words like "disability" are seen by a lot of people as negative, there is also something deceptive and grimy about the supposedly positive alternatives people try to use ... like "differently abled" and "physically challenged".
I suspect that the root of the conflict is that people have radically different understandings of language itself. For some, words mean what they appear to mean, their meanings are fixed, and that's it. For others, words' meanings evolve, words mean different things to different people, and we can shape what words mean … especially when they are meant to describe our own experiences.
The debates will probably go on forever, and maybe that's okay. It's another way for us to deepen our understanding of disability ... whatever you want to call it.
The debates will probably go on forever, and maybe that's okay. It's another way for us to deepen our understanding of disability ... whatever you want to call it.
Friday, June 20, 2014
Music For A Friday Evening: 25 Years Ago ...
I’ll try to keep my comments from sounding too much like an old fart on YouTube.
It’s hard to describe the mixture of feelings watching old video clips from the 1989 Moscow Music and Peace Festival. First of all, it happened in that really short few years when the Russia was still the Soviet Union, a nominally Communist superpower, but in the process of more or less voluntarily loosening up and generally saying “fuck it” to the whole world domination thing. Then of course there are the hair bands. On of them was Bon Jovi, which is still a going concern, but one of my favorites for a little less than a year was, oddly, Cinderella. Let’s just say I think their music aged a lot better than their look. Two years later, the likes of Nirvana took over everything, and I’m not sorry … but I still sort of get a kick out of these guys once in awhile. And it really does look like those Soviet kids are having a great time. I wish things could have gone smoother for them.
Join The Lexicon Project!
There is something I would like to add to the Disability Thinking Blog, and I’d like some help with it.
One of my favorite blogs for general political discussion, from a particular point of view (generally liberal / progressive), has a three-part “Lexicon”, which gives funny, insightful “definitions” for all sorts of formal and informal terms related to politics, and particularly how politics are discussed on the Internet. You can check them out at these links:
Balloon Juice Lexicon:
What I have in mind is a similar Lexicon for disability-related issues, culture, and Internet discourse. Here are some of the terms I'd like to start with:
Disability Lexicon
Ableism / Disableism
People First Language
Spoon Theory / Spoonie
Handicapped
Differently-Abled
Appropriation / Appropriative
Intersectionality
Medical Model
Social Model
Reasonable Accommodation
Accessibility
Universal Design
Autism Speaks
Neurotypical
Intellectual Disability
Retarded
Advocacy
Center for Independent Living
Assisted Living
Olmstead
ADA / Americans with Disabilities Act
Nursing Home
Home Care
Personal Assistance Services
Sheltered Workshop
Supported Employment
Developmental Disability / Developmentally Disabled
Special Needs
IEP / Individualized Education Plan
Special Education
Vocational Rehabilitation
Physical Therapy
Occupational Therapy
Assistive Technology
Devotee
Microaggression
Stimming
I’d like it if all the definitions could have a somewhat humorous, sarcastic tone, but also be more or less accurate. Or, at least accurate from a more or less “social model”, “crip culture” perspective. For that reason, I have mostly left out disability types, since I can’t really think of any sarcastic things to say about them at the moment.
Would anyone like to take a stab at any of these definitions? Would this even work? Should use a different approach … maybe straightforward, without sarcasm?
Thought Balloons
Wouldn’t it be great if people in real life had thought balloons you could see while talking to them, especially in tense chess game situations like job interviews? I wonder what we disabled people would read in job interviews if we has such powers, so we could see all that goes unsaid?
"You might be “adequate” for the job, but you can’t really be the best, can you?"
“The last thing I needs is to hire another 'high maintenance' employee."
"I feel awkward and anxious around you."
“If I hire you, sooner or later, I'll say or do something wrong that will get me in trouble."
"You say you can do the job but I don’t think you really know what you’re talking about."
"There’s something strange, something a bit 'off' about you that I just can’t place, and I don’t know how to ask you about it.”
"How can you possibly do this job with the disability you have?”
The next question is, what would employers read in our thought balloons?
Thursday, June 19, 2014
A Disability Show for Netflix?
I think I may have posted about this before, but after watching Season Two of “Orange Is The New Black”, the thought has come up again. Could someone develop a short-run TV show, along the lines of “Orange Is The New Black”, that focused on people with different kinds of disabilities and life experiences? I’m thinking that a nursing home or “day program” might be a good setting. Key elements might include:
- A new arrival who has lived independently with disability for his or her whole life, but wound up here due to hard times, extremely bad luck, and / or a sudden loss of autonomy.
- Disabled people who don’t want to be there, and are stuck because of lack of resources, domineering families, bureaucratic red tape, or lack of strong motivation to get out.
- Disabled people who “like” the institutional setting, because it feels safe and allows them to escape adult responsibilities.
- Conflict between people with different disabilities … those with lifelong disabilities vs. new disabilities, physical disabilities vs. cognitive, old vs. young, etc.
- Idealistic staff who push their own ideas and don’t really listen to what the disabled people want.
- “Burnt out” staff who actually do respect and care about the disabled people, but have been beaten down by a wrongheaded system and are out of ideas.
- A constant blend of interpersonal conflict and over-arching systemic corruption. Like the OITNB prison, the nursing home or day program would be depicted as flawed by its very nature, with small redemptive elements that can never be fulfilled because of how the system is structured.
The only way I could see any of this working would be if the characters were deeply developed and conflicted. Standard disability tropes would either have to be banished altogether, or else introduced then radically undermined as we got to know them as people. I think that the OITNB technique of using flashbacks to give us the background on characters might also work very well for this kind of disability story.
Another key I think would be for viewers to have an idea of what they’d be watching going in, and be sort of up for it, and then be blown away with how much more complex the stories and characters turn out to be. And, it would have to be written by someone intimately familiar with the specific issues and corruptions of the disability “industry”.
What would you like to see in a high-quality disability-themed TV show?
I Need To Talk About Tywin and Tyrion ...
I’ll try to avoid spoilers, but I feel the need work out some end-of-season “Game Of Thrones” thoughts.
Maybe I’m reading too much of my own thinking into it, but I have never really been convinced that Tywin Lannister hates his “dwarf” son Tyrion as thoroughly as Tyrion believes. It’s clear that Tyrion believes that his father despises him because of his physical abnormality. At least once Tywin admitted that he wanted to drown the Tyrion when he was an infant. He never denied any of the negative feelings about Tyrion attributed to him by others.
On the other hand, I don’t remember Tywin ever saying, affirmatively, that he hates Tyrion because he is a “dwarf.” Most often, he says what a disappointment he is because of his drinking, whoring, and irreverent, cavalier attitude towards everything, especially “the family”. Also, like Tyrion’s sister Cersi, Tywin supposedly also holds Tyrion responsible for his wife’s death, which occurred while giving birth to Tyrion. These would all be pretty weak reasons to reject a child anyway, especially since so much of Tyrion’s “attitude” is directly related to feeling he’s an outcast. But while the show seems to want us to understand that the conflict between Tyrion and his father is all about Tywin’s rejection, and that the rejection is all about Tyrion’s physical disability, what’s on the screen seems more ambiguous to me.
I think Tywin’s feelings about Tyrion are far more mixed and complex than Tyrion knows. I wouldn’t go so far as to say that Tywin hides a more progressive attitude underneath his patriarchal bluff and bluster. I would only point out that when Tyrion actually demonstrated competence and intelligence, Tywin went with it, and relied on him as a pivotal agent in the Lannister family’s plans. Despite this season’s stunning conclusion, I am left still wondering whether Tywin was telling the truth … that he never intended Tyrion to be executed, but rather was concealing plans within plans … much like everyone else in the “Game Of Thrones” universe. I’m not saying there was anything like conventional fatherly love there, but I think there must have been some kind of respect … maybe appreciation of potential.
If that’s even half true, that would suggest that Tyrion may have overestimated the amount of stigma applied to him, at least by his family. Cersi is pretty clear that she’d like to see him dead, but for her it really does seem to be misplaced anger about the loss of her mother. Jaime actually seems to like, respect, and love Tyrion. And the little kids of the Lannister family seem to respect and enjoy their funny Uncle Tyrion … the detestable Joffrey very much excepted. It can’t be easy being a “dwarf” in a medieval society, but Tyrion brings far more of his own messed up ideas to the table than he realizes.
Maybe it’s wishful thinking. Maybe it’s because Charles Dance brought more to the character than George R. R. Martin himself. I wonder if the true nature of Tywin’s feelings about his son Tyrion will ever be clear.
Then again, why should it be any clearer than these relationships are for real disabled people and their families? There's how our parents feel about us, and then there's how we assume our parents feel about us. It's complicated. All I can say for sure is that crossbows and death sentences don't tend to help clarify things.
Note: I follow “Game Of Thrones” the TV show, not the books, so if the relationships are somehow clearer in the books, I don’t really care. The show IS “Game Of Thrones” to me.
Tuesday, June 17, 2014
Cops, And Rent-A-Cops Gone Wild
Tresa Baldas, Detroit Free Press - June 16, 2014
Thank God this situation didn’t turn out as horribly for Wendy Kozma, as a similar scenario did for Ethan Saylor ... though it was bad enough. From the description of the scene at Walmart, it sounds like it could have been an almost exact repeat.
I’m not sure there are any great new lessons to learn here … just the same simple lessons that apparently aren’t being learned:
- Yes, some people with intellectual disabilities react differently to upsetting, unfamiliar situations than other people, sometimes in ways that can be baffling and even frightening. Understanding that as a general principle, however can drain away most of the fear, leaving room for conscious thought and compassion.
- People in charge of public safety and security … both police and private security … need to keep their brains in gear and not go on automatic force mode, especially when situations are tense and about to spin out of control.
- They also need to listen to the people they are dealing with, and to people with them, for clues on how to resolve situations. They especially need to resist the tendency to dismiss people who they might view as marginal or unreliable … such as children, old people (like Ms. Kozma’s grandmother), and young women (like Ethan Saylor’s aide).
- Companies that hire private security need to provide better training, and probably watch out more carefully for cop-wannabes who think narrowly and enjoy exercising authority just a little too much.
- There must be some way for companies and police agencies to apologize for obvious screwups without guaranteeing massive retaliatory lawsuits. Apologies on the spot would probably prevent a host of problems and trauma.
Best Article On Being An "Ally"
Heather Yaden, Applied Sentience - June 13, 2014
This article should be required reading for anyone who wants to work in the Disability Rights or Independent Living fields. Or, for that matter, in Special Education, Occupational Therapy, Rehabilitation, or Long Term Care.
It is hard to redirect and appropriately channel the unformed enthusiasm and sense of urgency of people who get all fired up to “help” people with disabilities … without dousing their enthusiasm or shaming them. This article, I think, mostly succeeds. I don’t like the undertone of guilt and shame, but in the end Yaden’s emphasis on humility gets the right message across. If you really want to help a group of oppressed and disadvantaged people, you can’t allow your work to become all about you.
The other thing I would add is that people with disabilities in the disability field are just as prone … if not more … to egotism and falling in love with their own ideas. Just because we are part of the oppressed group we work for, doesn’t mean we aren’t capable of drifting into a messiah complex. In fact, the risk may be even greater for us. Those of us who work in the field ... as activists, organizers, and counselors … can become overly impressed with our own path to empowerment, and push our models and ideas on our fellow disabled people, discounting their experiences just as thoughtlessly as “wanna-be” non-disabled allies.
Plus, you have to constantly check and question yourself. I “get” the ideas in this article, and have for a long time. However, my intellectual understanding hasn’t always prevented me from pushing my own agenda, privileging my own ideas, or griping about the inadequacies of the “consumers” who failed to jump on my brilliant bandwagon.
Monday, June 16, 2014
Another Great Disability Song
Sarah Watts, The Mighty
The search for popular music songs on disability themes continues with this excellent reminder from blogger Sarah Watts of “Wonder”, one of Natalie Merchant’s most successful songs from her 1995 solo album Tigerlily.
It has been years since I thought of this song, but as soon as I read a few of the words the tune came right back to me. I also vaguely remember relating to the song a bit because it seemed to be in the voice of a disabled chid. Reading the lyrics, it sure sounds like a deliberate song about disability, though it is broad enough to connect with anyone who feels odd or different. I like that the song is rather vague about the “wonder” of the child in question. We don’t really know exactly what’s different about her (or him?). Also, “this child will be able”, but we don’t get wish-fulfillment specifics. It doesn’t say she will be fixed or cured, but that she will be valuable and capable regardless of whatever makes her unique, whatever has brought doctors “from distant cities”.
For what it’s worth, I found an explanation of the song, which includes some second-hand information from Natalie Merchant who tries to broaden the message, while acknowledging that the song is indeed about a woman with disabilities.
Sunday, June 15, 2014
Happy Father's Day!
I found it fairly easy to write a Mother’s Day post about my mother, but as soon as I started this Father’s Day post, I realized that it would be much more difficult. Not because I have bad feelings or terrible “trigger warning” stories about Dad, but because his approach to my disabilities was complicated and conflicted.
To try getting a handle on things, I will simply note a few things about my father, Peter Pulrang, and hope they amount to some kind of coherent idea:
- I was born when my parents were around 40 years old, and their only other child, my brother Ian, was 14. So, I was a surprise in more ways than one. Sort out the implications of that if you dare to try ...
- Dad was a pediatrician, and though I am prejudiced of course, scores of people who live in my home town who I don’t even know have told me he was a terrific doctor for his patients and their parents. I am positive that Dad’s connections in the medical community amount to a pretty massive dose of privilege that I am happy to have had, especially when I was too young to know it.
- Even though he was a doctor, and my mother didn’t have a very high opinion of the medical profession, Dad was at first not the most committed of my two parents to pursuing aggressive medical care and therapy for me. Dad’s medical philosophy was minimalist, and I think that until he knew more clearly that there was perhaps less wrong with me than met the eye, his higher priority was protecting me from pain and suffering. I can only love him for that, but those of us who have had disabilities all our lives know how mixed the results of parental protectiveness can be.
- On the other hand, in many ways, Dad had the harder job of it, because he was definitely the point person and organizer of all of my medical care, and also the one to oversee my often painful physical therapy. He never entirely rebelled against this role, but I can still pretty clearly remember that he hated the exercises, especially, because they required him to cause me physical pain. Pediatricians cause little kids physical pain all the time of course. That’s why in general, doctors aren’t supposed to treat relatives. But I guess being a father doing home PT with your kid doesn’t count. Maybe it should.
- Dad was still helping me get dressed every day when I was a freshman in high school. I wish I could say I was the one to insist on my own independence, but it was Mom who stepped in and said enough already. It took almost no time, effort, or any sort of Occupational Therapy for me to learn how to dress quickly, so I probably could have been doing it much earlier. I think Dad just kept helping me out of habit, out of impatience (he hated seeing a person struggle to do something “the hard way”), and because helping me was how he expressed his love. It sounds too transparent and awful to be common, but I really wonder how many parents unconsciously use a child’s disability to preserve a sort of idyllic parent-child relationship well past its expiration date.
- My father ended his career in Public Health administration. In his professional capacity, in the early 1980s, he met some disability rights activists. I think that’s where Dad started to pick up some of the more positive “Social Model” ideas of Disability Rights and Independent Living. He tried, valiantly, to introduce these ideas to me when I was a teenager, but I was, you know, a teenager, he was my father, and I was convinced that he was talking nonsense. To me, disability was nothing but an embarrassing pain in the ass, and the idea that it could be a political identity or something to be proud of was beyond my comprehension. It must have taken all the self-control he had not to say “I told you so” when years later I ended up working in the Independent Living Movement, and explaining to him the finer points of progressive disability philosophy. Sons can be super annoying, no?
- I am always in danger of forgetting this … but Dad had dyslexia, and I think maybe a mild case of ADHD. The latter is just speculation on my part, but the dyslexia was, I guess, the real deal. Of course, it had to have been most difficult in his childhood and teen years, at at time before anyone had any notion at all of learning disabilities. I don’t think his childhood was unhappy, exactly, but Dad was pretty specific in describing an education drilled into him by well-meaning people who probably only half understood what they were dealing with. This had to have affected his concept of disability, but exactly how I’m not sure. Occasionally, when I hear people say how remarkable I am to have done so well with my disabilities, I think about my Dad, who I don't think ever got proper credit for graduating from Princeton, and then McGill Medical School when reading and writing were such slow, laborious processes for him.
- Dad also experienced significant hearing loss later in life, probably due to exposure to loud engine noise as the Co-Pilot of a B-24 in the Second World War. He wasn’t fully deaf in either ear, but it affected his sense of connection to other people, making him feel more isolated and “left out” of things. Again, I think this must also have influenced how he viewed disability.
As happened with my mother, my relationship with my father was at its best when I was fully grown up and he was retired. We saw each other less, but developed a stronger, connection … not always agreeing, but always engaging.
Looking back, I can see that Dad and I had a relationship that was at the same time very unusual, and utterly typical. At any rate, I sure do miss him.
Dad getting into his trainer airplane, c.1943.
Dad and Mom, I think shortly before they married.
My brother, Ian in front, Grandpa Pulrang on the left, Dad on the right.
Dad and me ... 1986.
Dr. Peter C. Pulrang, 1925-2008.
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