Monday, June 30, 2014

"Let Us Now Praise Famous Men"

Bob Gardinier, Albany Times Union - June 28, 2014

I ran across this article almost by accident, but I found it fascinating in I’m sure a completely different way than what was intended.

Let me say first that I don’t know anything about Mr. Fitzgerald, or about the agency he apparently gave so much of himself for, the Center for Disability Services in Albany, New York … not that far, really, from where I live. For all I know, he was probably completely sincere and well-intentioned, as selfless as his friends suggest he was, and even progressive in his view of disability, at least in the context of his life and times.

That’s just it though. The whole article feels diffused with a very old-fashioned, back-slapping, golf-tourney, rich guys doing good vibe that seems more in line with a Jerry Lewis Telethon than with an ADAPT protest, or even a modest Center for Independent Living.

I’m really not trying to be mean, but the article, unintentionally highlights not only a difference in philosophy … the Center has a sheltered workshop where Mr. Fitzgerald’s own son works, for God knows how long … but in tone and personality between “your grandfather’s” disability agency, and the consumer-driven, activist organizations of today. Except that it isn’t really yesterday and today. In many cities and towns the two kinds of disability agencies live side by side, rarely battling each other directly, but eyeing each other with suspicion and perplexity. In general, they also tend to have entirely different bases of support, and cleanly separated spheres of influence and awareness.

Anyway, I realize that’s a lot to get from a the obit for a local benefactor, but boy did it come through to me loud and clear.

Sunday, June 29, 2014

Disability In Comics

Kathleen Hawkins, BBC - June 24, 2014

I am fascinated by pop culture, but I have never been a comic book person, so I really appreciate this BBC article about the history of disabled characters in comics. It seems to be inspired by the recent addition of Harper in the Archie series, but it looks back at some successful and short-lived disabled characters and superheroes, including Daredevil and Oracle, (a.k.a. before her injury, Barbara Gordon or “Batgirl”).

I can’t tell from this article, or my superficial exposure to comics traditions, whether disabled characters in comic simply follow the same disability tropes seen in other media, or if the comic book medium fosters either much more sophisticated depictions, or much less. It does seem like the X-Men series may be richer in disability themes than any other of the explicitly disabled characters in comics and superhero universes. It also seems like there is still plenty of room for at least a few more nuanced, developed disabled comic book characters.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
Sunday, June 22, 2014
Monday, June 23, 2014
Tuesday, June 24, 2014
Thursday, June 26, 2014
Friday, June 27, 2014
Saturday, June 28, 2014

Saturday, June 28, 2014

Great Video Series

A little over a week ago, I ran across this video on bullying by the Australian group, Cerebral Palsy Alliance. I was working on something else at the time, so I put it my reading queue, and promptly forgot about it.

I finally just watched it, and I'm really impressed. Most disability awareness campaigns are targeted mainly to non-disabled people. These videos deliver separate messages to two different audiences at the same time ... greater understanding for non-disabled viewers, and believable, credible empowerment for people with disabilities, especially those who are young.

Other videos in the “Making It Real" series:

Friday, June 27, 2014

A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

Summer blog hop series: challenge!
This will be an uncharacteristically short blog post for me, because I kind of deal with this issue of “coming to terms” all the time at my blog, Disability Thinking. Just visit there and browse, and you should be able to figure out how I have and have not come to terms with disability in my life.

I will only add this …

I am 47 years old. I have had disabilities all of my life. I have been exposed to a wide range of different ideas about disability, approaches, disability cultures, and philosophies. Yet, although I mostly relate to a generally “positive” view of disability, I can’t entirely buy into the idea that disability is “great” or “awesome” or “special”. Nor does it feel right to say it’s a “tragedy” or “handicap” or “illness”.

To me, disability isn’t a good thing, or a bad thing. It is just a thing. I used to think that was a cop-out, but more than ever, I really think that’s my answer … the terms I have come to with disability. Any other answer seems off-target and reductive.

Disability and Politics

picture of questionnaire check boxes with one box checked with a red checkmark
Are you a Democrat or a Republican? A Progressive Conservative, Liberal, or New Democrat? Labour, Tory, Liberal Democrat, or whatever that UKIP thingy is? Are you a liberal or conservative, or perhaps a libertarian?

If you're not sure, or if you think you could do with a bit of a check-in on your political views, take this new Pew Research Center questionnaire to find out your approximate political position, at least in relation to US politics. Be sure to note the emphasis on choosing the answers closest to your beliefs. You will probably find several questions where you like aspects of both answers.

I also recommend this article about the Pew Center’s new report on politics in America, which, among other things, subdivides the traditional red vs. blue, liberal vs. conservative formulation into more specific viewpoints. It’s an interesting read.

Then ask yourself, "Does my disability experience have any affect on my general political views?" Or, do your political views influence how you understand disability?

Sometime in the next few days, I plan to post something about how I “scored” on the Pew questionnaire, and how that relates to my understanding of disability.

Thursday, June 26, 2014

Knope's Bold Idea

Parks and Recreation TV show poster
I just re-watched Season 4 of Parks and Recreation, in which Leslie Knope runs for the Pawnee, Indiana City Council. I had totally forgotten the interesting little disability story in Episode 17, which includes “Ramp Up Pawnee”, candidate Knope’s proposal to build a ramp on every set of stairs in Pawnee, in a bid to win the essential Senior Citizen vote.

Considering it is only one theme in an otherwise packed episode, there is a lot to chew on, especially for disabled people who can relate to wheelchair accessibility problems:

- There is the idea itself … that a local politician running for office would think that pledging to improve a town’s accessibility was a good way to win votes, so much so that her opponent felt forced to make a “better” proposal to address the same problem.

- On the one hand, it’s so unusual that the joke fits well into “Parks & Rec’s” absurdist tone. How many real-life politicians make physical accessibility improvements a key priority? It’s practically unheard of, and the completeness of Leslie’s proposal is as absurd as it is awesome.

- On the other hand, it’s not absurd at all. Seniors are an important voting bloc, and accessibility is potentially an important issue for them, not to mention younger people with disabilities. The fact that it’s kind of a joke on the show just underscores what an untapped opportunity it is in actual politics.

- Leslie’s opponent, rich kid Bobby Newport, counters with a “better” proposal … install lifts rather than ramps. I guess it’s better because it’s more expensive. The thing is, in most cases, ramps are easier, and lifts are a last resort when ramps are infeasible. Lifts are, generally, a pain in the ass. On the show, it’s just accepted that lifts are better.

- For some reason, I just love Leslie’s slogan for her ramp initiative: “Stairs are a young man’s game!” It’s not even very accurate, but I like that there’s a hint of pride to it … almost like saying, “Stairs are for chumps”.

- “Not enough ramps is the number three complaint among Pawnee seniors, right behind ‘Everything hurts,’ and ‘I’m dying.’” – Leslie

- When I Googled the episode, I found this fantastic website for the Knope 2012 campaign, including a page on Leslie’s proposal, “Ramp Up Pawnee!"

As has often been said, these brief story lines are a great way for TV shows to help “normalize” disability and disability issues.

More About Olmstead

Because there's always more to say about Olmstead …

Matt Sedensky, Associated Press / ABC News - June 26, 2014
"Brent Kaderli has a wheelchair-accessible van waiting in the driveway, a hospital bed in a spare bedroom and an electric lift that's left unused. If the 30-year-old quadriplegic had his way, he'd be living here, in his father's house, with help from aides. Instead, he is in an institution, hoping each day for a place that feels more like a home …"
“… Progress has been made in every state to keep more aged and disabled people in their homes and communities, but only half of Medicaid spending goes to such care, with the services routinely denied by a system that favors institutions even though they're typically more expensive to taxpayers.”
This is a very thorough article, making a good case that politics and profit, not health and safety are the main reasons why nursing homes and institutions are still the “default” option for Medicaid long term care.

National Council on Disability - June 22, 2014
"Even as we celebrate the 15th anniversary of the Olmstead decision, NCD recognizes that there is more work to do. As courts continue to apply and interpret what Olmstead means and how best to implement practices and policies that reflect its core principles of self-determination and inclusion, NCD offers the following guidance to facilitate and foster ways that people with disabilities can work, play and contribute to all aspects of American life alongside our non-disabled peers.”
The National Council on Disability highlights how the Olmstead decision is also changing disability policy in employment, and in services to people with developmental disabilities.

The White House - June 20, 2014
"All indications are that we are heading in the right direction. We are working to address many of the most imposing barriers facing those who want to live on their own: finding affordable, accessible housing and improving access to quality support and services tailored to each person’s goals …”
“… Can people eat food they like, when they want to? Choose their roommates? Have guests visit when they want? Come and go from their home as they please?”
The White House shares some individual Olmstead success stories, and focuses on affordable, accessible housing, a key component and often a key barrier to people who want to leave institutions and live in their own homes. The statement also notes recent changes in the definition of integrated, independent living. It has less to do with whether you rent or own, live with others or not, or how much daily help you have … and more to do with whether you in a household, or are a patient, resident, or client.

Tuesday, June 24, 2014

Olmstead, with Charts!

Information Bulletin #390
Steve Gold - June 20, 2014

This past Sunday was the 15th Anniversary of the U.S. Supreme Court decision in Olmstead vs. LC and EW ... or just Olmstead for short. It is an imperfect analogy, but not too far off to say that Olmstead is to people with disabilities what Brown vs. Board of Education is to racial segregation.

In its Olmstead decision, the Supreme Court applied the Americans with Disabilities Ac, an act of Congress in 1990, in a novel way. It found that "long term care" is a service, like any other, and that state governments that fund long term care must be sure to offer the service in the "most integrated settings", i.e., in peoples' own homes, not just nursing homes and institutions. It also affirmed that a person's choice of where and how to receive long term care services should play a role at least equal to the opinions of doctors and social workers. Finally, the decision ... and the President's Executive Order in 1999 which endorsed strengthened it ... underscored that states and localities might have to change their long term care programs and practices, even to the point of complete overhaul, in order to comply. "The way it's always been done" would no longer be an acceptable limitation, and "We don't offer that kind of service here" could no longer be an excuse.

Let's put it another way. If you, or your disabled child, or your aging parents, need help with everyday self-care every day, or several times a week, and your county or state says the only way they can get that help to leave their home and go into a nursing home, assisted living, group home, or other institutionalized facility ... that is a violation of their civil right to choose getting care in the manner and place they choose. It doesn't say they can't go into the "old folks' home" if they want to, but they can't be forced to just because nobody can or wants to figure out another way for them.

Most people, given the choice, would rather live in their own homes than nursing homes. With this Olmstead concept asserted at the highest level of U.S. law, the expectation was that more people would get care in their own homes and fewer in institutions.

A good way to measure how Olmstead has changed long term care for disabled people is to look at how Medicaid spending on long term care overall is divided among institutional care and community care ... between "facilities" with numbers of "beds", and care provided to people in their own homes and apartments. Steve Gold, one of the foremost advocates and policy analysts on long term care, recently published national and state-by-state data on community vs. institutional Medicaid spending, comparing 2000 with the latest complete data for 2012. Here, in chart form, is some of what he found:


2000 Medicaid Average Spending on Long Term Care, United States, 81.3% Institutions, 18.7% Community - 2012 Medicaid Average Spending on Long Term Care, United States, 61.2% Institutions, 38.8% Community
We still spend a good deal more than half of Medicaid long term care dollars on institutional care than we do on providing care in peoples’ own homes, but there has been a 20.1% shift towards community-based care. That’s a pretty big shift that almost certainly is the result of policy changes and peoples’ choices, not changes in peoples’ physical needs. In other words, it’s a shift that has occurred because we wanted it to occur, and made it happen.


2012 Medicaid Spending on Long Term Care, North Dakota, 86.0% Institutions, 14.0% Community - 2012 Medicaid Spending on Long Term Care, Minnesota, 34.6% Institutions, 65.4% Community
There is a vast difference among the 50 states. It’s interesting to note that the two states at the opposite ends of the spectrum are the neighboring states of North Dakota and Minnesota. North Dakota is still much more invested in institutional care, while in Minnesota, institutional care is still substantial, but also a clear second to community services, a still a rarity when in most states, institutional care still outweighs community services. Finally, it’s encouraging to see that while some states have made only modest changes, and others have a long way to go, every state has improved it’s balance in favor of community care.

Again, these different numbers can’t be driven by differences in need … disabled and elderly people most likely have the same kinds of needs and preferences in both states. Such a huge difference in spending must be due to different policies, and policies can be changed.

What it means for people is that more of the people who need long term care … children, young disabled adults, and people with disabilities from age … now are able to get it in their own homes, and fewer wind up in nursing homes or other institutions against their wishes. That is progress, and it’s far more dramatic than any chart can fully demonstrate.

A Little Moxie Summer Blog Hop - "My Connection with Disability: An Introduction"

Summer Blog Hop Series: Challenge!
This is my first contribution to the "A Little Moxie" Summer Blog Hop.

My connection with disability is that I have disabilities. Actually, I have one underlying genetic condition called Arthrogryposis, which produces a variety of impairments.

That doesn't mean that I have always connected with my disabilities in the same way. Looking back, it seems like I have gone through four phases in my understanding of disability:

Aware and Ignore

I can’t remember a time when I didn’t know that I was physically different from most other kids, and it feels like I always associated this with words like “handicapped” and later “disabled”. When I had to have surgery, intensive physical therapy, new braces or orthopedic shoes, I would focus on my disabilities for a brief window of time. Mostly, I ignored them while adapting to them. That is, I never tried to act like I could do everything non-disabled kids did … I didn’t ignore my disabilities that way. But I didn’t think about my disabilities or excessively worry about them during times when nothing in particular was happening with them. Until my Senior year in college, for the most part, the topic of disability in general bored me.


I was a Senior in college in 1989, the year that students at Gallaudet University made national headlines with an extremely effective protest that resulted in the appointment of Gallaudet’s first Deaf President. Gallaudet is the nation’s premier university for the Deaf, nearly all of its students are Deaf, and their protest was the first time I became aware of people with disabilities focused on disability but in a militant and empowering way, not pleading or pitying. This was the era when Jerry Lewis was still broadcasting a popular and admired telethon fueled on tears, sad photos of bereft children, and the catchy by in retrospect creepy concept that kids and adults with Muscular Dystrophy were “Jerry’s Kids”. This was disability activism in my eyes, until I saw the Gallaudet uprising. It’s important to note that it was not at all the first mass protest by disabled people in history, just the first one I knew anything about. My attitude towards my own disability started to change then. I began to realize that there might be a connection between a part of myself I sort of despised … my disabilities, and something I had come to love, political thinking and activism. I still didn’t do anything about it right away, but for the first time I could envision another way to think about disability that was both personal and political.


A few years later, after writing a Master’s thesis on depictions of disability on television, I learned that a Center for Independent Living had opened in my home town. I didn’t know what a CIL was, but I soon found out, and got a job there after doing a summer internship. Over the next 23 years I went from a staff position to being Executive Director. No matter what position I held, however, the important thing is that I got to know literally thousands of people with all kinds of physical and mental disabilities, from every conceivable background, with a variety of strengths and human frailties, and facing social, physical, and sometimes most significantly … financial barriers to independence and fulfillment. This experience broadened my horizons, and gave shape to my understanding of things like ableism and discrimination, body shame and acceptance, trauma and empowerment, and how disability crosses with race, gender, education, and economic status. I also developed strong convictions about long term care, education of disabled kids, and the importance of policy in affecting the lives of people with disabilities. And, I got very tired, and very burned out. Worst of all, from my point of view, I started to feel cynical about the people we were trying to “help”. It seemed like “we” in the Independent Living Movement were more interested in independence and empowerment than the people with disabilities we met in our communities. For that and other reasons, I stepped down from my position, and started “disability blogging”. Physically, I needed to rest. Mentally, I needed to refocus and recharge … or else cut my connections for good and do something else entirely.

Listening and Learning

Blogging turns out to have been the perfect choice. I went in thinking that there were few good disability-related websites and blogs, and instead found not one, but several vibrant disability blogging communities that restored my faith in the disability community, and my humility about having all the answers. I found parents of kids with disabilities, whose blogs provoked me, challenged me, and gave me new insight into my childhood and family. I found younger people with disabilities … teens and young adults … who seemed to perceive no great contradiction between complaining when disabilities got hard, calling out ableism in everyday life and culture, and being awesome in their disabled bodies and minds. There are lots of 25 year olds who are more comfortable with their disabilities than disabled people twice and three times their age. I also found that my ideas of disability weren’t necessarily state-of-the-art anymore. Some aspects of newer thinking about disability I have a hard time with, but for the most part, new formulations and ideas have energized me, and given me a renewed respect for disabled people of all sorts who do what they must to survive and thrive.

Finally, this journey has brought me to the point where I feel both more comfortable with my own disabilities, and more unsettled and curious … in a good way.

Monday, June 23, 2014

Blog Changes

white 3-d stickman figure holding a large orange wrench
I have made a few changes and additions to Disability Thinking recently:

- The title photo and font are a little different, for no particular reason except I think they look a bit better.

- There is a new link list on the right column, “Useful & Entertaining”, linking to my favorite sites not related to disability matters.

- I will be participating in two “blog hops”, which I have added at the bottom of the page. These will show links to blog posts by all participants, including me when I add my own. They are from two excellent disability blogs, A Little Moxie and Down Wit Dat.

- Last weekend, I asked for help developing a snarky lexicon of disability terms and slang. I have since decided to make it more or less straightforward and non-satirical, though it will definitely contain “definitions” from a particular point of view. Expect the first few entries soon!

That is all.

Sunday, June 22, 2014

Things That Make Me Happy

Tattered Obsidian - June 22, 2014

This blog post perfectly illustrates how so many disabled people struggle with conflicting feelings and pressures about using … or not using … wheelchairs, crutches, and other types of adaptive equipment. Also, what a waste it can be to shun adaptations and try to do everything the hard way, especially if it’s because of other peoples’ opinions. And finally, it’s a lovely example of disabled people supporting each other, even when they haven’t even met.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
Sunday, June 15, 2014
Monday, June 16, 2014
Tuesday, June 17, 2014
Thursday, June 19, 2014
Friday, June 20, 2014
Saturday, June 21, 2014

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.

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
Appropriation / Appropriative
Medical Model
Social Model
Reasonable Accommodation
Universal Design
Autism Speaks
Intellectual Disability
Center for Independent Living
Assisted Living
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

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

Line drawing of a cartoon "thought balloon"
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?

Picture of an old-style TV set with the wheelchair symbol on the screen
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.

Tywin Lannister, older, white, stern-faced balding man
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.

Tyrion Lannister, younger, blonde haired little person with a serious face
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

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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

Photo Of The Day

Young girl in a wheelchair doing ballet-style arm movements, viewed from behind, with front reflection in a wall mirror
From the WeHeartIt Tumblr blog, via Disability Fashion Project.

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.

Natalie Merchant, Tigerlily album cover
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

Disability History Timeline

This is fantastic! I hope it can be added to and edited by others, like Wikipedia.

Via the Ramp Your Voice! Tumblr blog.

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

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
Sunday, June 1, 2014
Monday, June 2, 2014
Tuesday, June 3, 2014
Wednesday, June 4, 2014
Thursday, June 5, 2014
Friday, June 6, 2014

I am taking a blogging vacation this week while I attend to other life stuff. Disability Thinking will return on Sunday, June 15th.