From the WeHeartIt Tumblr blog, via Disability Fashion Project.
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.
Sunday, June 8, 2014
Weekly Wrap-Up
Sunday, June 1, 2014
Monday, June 2, 2014
Tuesday, June 3, 2014
Wednesday, June 4, 2014
Thursday, June 5, 2014
Friday, June 6, 2014
Note:
I am taking a blogging vacation this week while I attend to other life stuff. Disability Thinking will return on Sunday, June 15th.
Friday, June 6, 2014
Meeting Harper
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| Credit: Archie Comics |
Jessica Goldstein, Think Progress - June 5, 2014
I am not a comics person. I think I read an "Archie” comic once when I was 8. Still, I’m vaguely aware that the "Archie" world is a deliberately wholesome, positive, nostalgic portrayal of high school. Given that, the addition of a character with a disability to the "Archie" lineup means something more than just representation.
If Riverdale High School is an ideal world, and Archie's gang is an ideal group of high school friends, and that ideal group now comfortably includes a person in a wheelchair, then that really does reinforce the normalcy of disability. It also looks like the new character, Harper, will include some important details that are often missing from more obviously deep disability portrayals … such as the fact that many wheelchair users do sometimes walk a little bit.
The Think Progress interview with Archie writer and artist Dan Parent is an interesting read. I’m not sure how I feel about the fact that they chose to model their character on a particular person, though Jewel Kats seems like a pretty amazing role model. Maybe it’s better for non-disabled artists to ground their interpretations in people and situations they happen to know personally than to speculate on what other experiences might be like just to get a more challenging portrayal. I would love to see a disabled character in a comic like Archie born with a disability, or one who has more obvious struggles with independence and social stigma. Harper is an easy character to digest; she seems to be pretty, charismatic, talented, and rich. In another setting this might be considered a cop-out, but in the “Archie-verse”, Harper seems like a real milestone.
I doubt I’ll start buying Archie books, but I will keep an eye out as time goes by to see how Harper fits in … at with the Archie gang, with readers, and with the disability community.
Thursday, June 5, 2014
Remember The OINTB "Roller" Gangster?
Orange Is The New Black Season 2 starts tomorrow. I don’t expect a return of the “roller” gangster wannabe, who showed up for a brief couple of scenes in the first season, but it would be a nice surprise if she did.
Wednesday, June 4, 2014
Fault Lines in Disability World
One of the things that takes people by surprise when they start to discover the true size and diversity of the disability world is how divided it is. Disabilities, themselves are very different, generating some huge differences in experience. Disabilities also cut across all other groups and subgroups of humanity, including gender, race, nationality, philosophy, ideology, and economic status. So, every disabled person is “disabled”, and also “X”, “Y”, “Z” and many other designations. Also, there are several different fundamental ways to see and understand disability, each of which depends partly on personal experiences and partly, I believe, on each person’s underlying personality and world view.
Just for fun, I decided last night to try and map out the main “fault lines” in “disability world”. I call them fault lines instead of divisions because like actual fault lines on the earth’s crust, a piece of fine china, or an eggshell, the divisions aren’t always visible, and only become real cracks under pressure. The disability community can often look unified, and from the outside it’s easy to see how similar we are, but the fault lines are there, and tend to follow some logical paths.
Here is what I have so far … with a note on each about my own status:
Disabled from birth / disabled later in life.
I have had disabilities since birth.
Physical / sensory / intellectual / mental health disabilities.
I have physical disabilities.
Stable disabilities / disabilities that are progressive / disabilities that cause considerable pain and illness (chronic illness or “spoonies”).
My disabilities are mostly stable, though lately I have started to feel like I might be becoming a “spoonie”.
Visible (noticeable) disabilities / invisible (not immediately apparent) disabilities.
My disabilities can be seen right away.
People with disabilities / families of people with disabilities.
I am a person with disabilities, and nobody else in my immediate family has disabilities.
Medical / cultural / political approaches to disability.
I tend to be most interested in the political implications of disabilities, though recently I have become more interested in disability culture.
Disabled people from secure, privileged backgrounds / disabled people who are disadvantaged in multiple ways besides disabilities.
For the most part I come from security and privilege.
Do these fault lines look familiar? Am I missing any? Where do you sit? I’d love to read your comments!
Tuesday, June 3, 2014
Tyrion Remembers Orson
I want to talk about a scene in this week’s “Game Of Thrones”, in which Tyrion Lannister, a “dwarf” sometimes known as “The Imp”, and his brother Jaime talk about their long ago cousin, Orson, who was “simple”, a “moron”:
I can't embed the video, but click here to watch the whole scene.
Tyrion: Do you remember cousin Orson? Orson Lannister?
Jaime: Of course! Wet nurse dropped him on his head, left him simple.
Tyrion: Simple?! Used to sit all day in the garden crushing beetles with a rock … “Kung, kung, kung, kung …”
Jaime: Kung, kung, kung!
Tyrion: Nothing made him happier.
Jaime: Nothing made you happier. You’d think being tormented from birth would give you some affinity for the afflicted.
Tyrion On the contrary! Laughing at another person’s misery is the only thing that made me feel like everyone else.
Wow. That line hit home.
Ideally, the common experience of disability would mean that people with disabilities all understand each other and treat each other with extra care, but the lure of acceptance is strong. In childhood and youth, especially, (but not only), there are rewards for pissing a little on people perceived to be less capable, less “normal" than you are, especially when you aren’t anything like “normal” yourself. I was certainly no model of disability solidarity in my youth, and I’ve failed at it more than once as an adult, too.
Tyrion goes on to explain how and why he spent so much time with Orson, trying to figure out why he sat squashing beetles all day, every day:
Tyrion: So, I went to Maester Valeric’s library. Turns out, far too much has been written about great men, and not nearly enough about morons. Doesn’t seem right!
There’s a lot more said in this monologue, and lots of meaning behind it, most of which has nothing to do with Orson’s or Tyrion’s disabilities. Of course, I was engrossed by the disability stuff itself, how Tyrion’s language is dismissive and cruel, yet at the same time showing clear evidence of a much deeper understanding and caring on his part for Orson. He may not have had quite the empathy we’d like to see, but he had curiosity, and seemed to approach Orson without biases. All jokes aside, Tyrion saw Orson as a person he wanted very much to understand … a sentiment I doubt anyone else in the Lannister clan shared.
Tyrion: And as I watched, I became more and more sure of it. There was something happening there. His face was like a page of a book written in a language I didn’t understand, but he wasn’t mindless, he had his reasons.
It seems like he isn’t saying much here, but really it’s fundamental, and it’s a bolder statement about the real depth and personhood of people with disabilities than even some close relatives and experts in the real world can manage. Tyrion suggests that it’s not that Orson was senseless, it’s that Tyrion had never been able to decode sense in him. In the context of the show, he’s saying the same about the world he lives in, which appears to be senselessly cruel … and may be in fact … but he, Tyrion believes that on some level it must make sense, if only he can figure it out.
I only hope he lives long enough.
The whole conversation stunned me, because it was so unexpected. I am even more curious now whether the author, George R. R. Martin, has specific reasons why he has made different disabilities such important elements in his stories.
Addendum:
I should have mentioned for the uninitiated that Jaime, too, is newly disabled, having had his right hand chopped off while in captivity. This is a pretty big issue for him since his main identity and "claim to fame" in the "Game Of Thrones" world was as possibly the best swordsman in Westeros. So in this scene, we have two brothers, each with a different disability, discussing a cousin who had yet a third different kind of disability. And arguably, they're not even really talking about disability. You just don't see that happening on any other TV show, or even many movies.
Addendum:
I should have mentioned for the uninitiated that Jaime, too, is newly disabled, having had his right hand chopped off while in captivity. This is a pretty big issue for him since his main identity and "claim to fame" in the "Game Of Thrones" world was as possibly the best swordsman in Westeros. So in this scene, we have two brothers, each with a different disability, discussing a cousin who had yet a third different kind of disability. And arguably, they're not even really talking about disability. You just don't see that happening on any other TV show, or even many movies.
More On Institutions
Alexa Ura and Corrie MacLaggan, The Texas Tribune - June 3, 2014
There’s one thing that I’m sure is a factor in the ongoing debate over institutionalization and other more “sheltered” service models. People become personally invested in justifying positions that make their own choices look better. Parents of disabled children who have chosen institutionalization may have some good reasons for concern about the move away from large institutions, but I’m sure it’s also hard to hear again and again how fundamentally wrong the the entire approach is … the approach they at some point chose for their son or daughter, thinking (and hoping) it was the best. It’s hard enough to admit you have been wrong about something for years. It’s got to be especially awful to digest the possibility that a choice like this might have been tragically, horrifically wrong.
I’m not sure there’s an equivalent motivation on the other side. Yes, those of us who favor the end of institutions and segregated services feel personally about it. Some of us have been in such programs ourselves, and broader approval of our choice to leave bolsters our confidence that we made the right decision. Those of us who are disabled but have never been in more restrictive programs see others like us living such radically different lives, and we personally fear that we could end up there at any time, unless such places are phased out and closed for all time. I don’t think the self-justification motive is as strong with us, though, than it is for the pro-institutional “side”.
The other problem is that it's almost impossible in traditional journalism to deal with the more complex reasons why otherwise reasonable individuals support models that most people, on some level, feel are at best grossly out of date, and at worst cruel and corrupt.
The other problem is that it's almost impossible in traditional journalism to deal with the more complex reasons why otherwise reasonable individuals support models that most people, on some level, feel are at best grossly out of date, and at worst cruel and corrupt.
In case you missed them, check out some other recent posts about institutionalization:
How Could We Have Thought It Was Okay? - May 24, 2014
Institutionalization Followup - May 25, 2014
Monday, June 2, 2014
The AV Club Looks At Intellectual Disability Portrayals
Josh Modell, The AV Club - June 2, 2014
Here’s another welcomed, decent exploration of a disability issue by a “mainstream” publication.
The default position of most pop culture consumers seems to be that movie and TV portrayals of people with intellectual disabilities are by definition profound and heartwarming. There’s a sense that as long as intellectual disability stories aren’t obviously mean-spirited, we sort of have to love them. To quibble or critique is to come off as heartless and insulting. So, this article starts out with a lot of credit simply by acknowledging that such portrayals can actually be both well-intentioned and “awful”.
Writer Josh Modell rightly faults the apparently cynical trend among aspiring actors to take on intellectual disability roles in hopes of scoring acting awards, as if playing intellectually disabled people can’t help but reveal true acting brilliance. In fact, it tends to come off more as stunt acting … a set of formulaic tricks that display actors' knowledge of the tricks, rather than their depth of acting talent. I think that the key to portraying people with disabilities is the same as portraying anyone else … character depth and development. In a few examples, Modell also points to how frequently details are simply unrealistic, like Sean Penn’s “Sam” in “I Am Sam”, who in real life would have at least a few difficulties raising a little girl, but in the movie all of those troubles are depicted as nitpicks from mean bureaucrats. In fact, I think Modell kind of misses the boat on how often intellectual disability film plots rely on straw-man opposition that feels familiar, but is almost never as evil and unwarranted in real life.
The most interesting thing in this article, though, is that Modell seems to be engaged in a kind of dog-chasing-his-tail exercise about the difference between insulting stereotypes and realistic portrayals. An intellectually disabled character talking loud and having “specific obsessions” can certainly be overdone. On the other hand, intellectually disabled people often do both of these things, and sometimes it’s the first thing you notice about them. When it is overdone and that’s all there is to the portrayal, it is insulting. But if they are surface traits that lead to deeper understanding later on, then they aren’t necessarily offensive … unless we think those behaviors themselves are totally unacceptable, which would in itself be insulting and ableist. I think this sends Modell off the rails a bit regarding “The Other Sister”. True, most critics and discerning viewers hate this film for supposedly being over-the-top, but Juliet Lewis and Giovanni Ribisi’s scenery-chewing didn’t bother me that much precisely because their behavior and demeanor felt real to me, and not one-dimensional. Some people are, in fact, uninhibited and extroverted, and there are very real, important stakes involved here that fully justify the characters’ outsized emotions.
I wish the article explored this dilemma a bit more, though there are hints to a solution. Modell notes at least one occasion when intellectually disabled supporting characters were portrayed by intellectually disabled actors … much more effectively than the supposed star.
There are several of these movies I haven’t seen, and am very curious about now, especially “Tim” (Mel Gibson) and “Profoundly Normal” (Kirstie Alley). What I would really love to see is a followup article identifying some “good” intellectual disability portrayals. By leaving out “Forrest Gump” and “Rain Man”, does Modell mean to imply that he likes them … that they aren’t overdone or insulting? They’re not terrible, but I think a lot of his criticisms could be applied to these films, as well.
Still, quibbles aside, it’s good to see wide-audience pop culture websites take on disability issues. More of this, please!
Sunday, June 1, 2014
Did You "Miss This In History Class"?
Stuff You Missed In History Class Podcast - May 28, 2014
Hosts Tracy V. Wilson and Holly Frey do a really good job explaining the “Deaf President Now” movement at Gallaudet University in 1989 to an audience that is probably mostly unaware of it. I especially appreciated their focus on the ideological divide between different approaches to communication for the Deaf … between those who emphasize speaking and lip-reading, and those who assert the importance of Sign Language. I was also impressed at the episode’s introduction, in which the hosts talk about being hesitant to cover disability history topics because they don’t want to perpetuate syrupy hero-worship that back-handedly implies low expectations and “otherizing” of disabled people. This might be a concern they have learned from others, but it sounded like the idea came naturally to them, which is nice to hear.
I left a comment suggesting that they do an episode on the 1977 504 Protests, another empowering moment in disability history. Shows and podcasts like this need more encouragement to take on disability topics now and then.
Weekly Wrap-Up
Sunday, May 25, 2014
Monday, May 26, 2014
Tuesday, May 27, 2014
Wednesday, May 28
- Views from an Adult With Disabilities (In collaboration with Brielle & Me)
- Criptiques Podcast 2
Thursday, May 29, 2014
Friday, May 30, 2014
Saturday, May 31, 2014
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