Tuesday, September 30, 2014

Blogging To-Do List

Illustration of a blank To Do List
It has been a little over a year and a half since I started the Disability Thinking blog, and I have accomplished many of the things I set out to do.

I have made 964 posts, this one included, with at least one post pretty much every day.

I have build some sort of regular audience. The blog has over 63,800 total “hits”. That's not a spectacular number, but I am happy with the current rate of around 200 hits per day. Aslo, Disability Thinking has been visited by people from 76 countries, including the United States, with really substantial traffic from Canada, the United Kingdom, and Australia.

I finally started the Disability.TV Podcast, and it is coming along slowly but surely.

It seems like a good time to brainstorm a To-Do List of blog topics I feel I have neglected. For instance:

Faith / Religion and Disability

Assistive Technology

Practical Ideas for Independent Living

Relationships / Sex

I have one more topic in mind that's hard to describe in one line. Basically, it is self-critique … both of my own approach and thinking about disability, and how the disability community as a whole deals with disability. For good reason, disability blogs spend a lot of time explaining and promoting disability-centered approaches to the subject to the wider world. That is important because most people have an entry-level understanding of disability issues, at best. Yet, there are aspects of my own thinking that could use some revision. And there are habits and modes of thinking that are popular in disability culture that I don’t entirely buy into. I hope to deal with this in some way over the coming months. The trick is to do it without undermining support for the disability community, or simply repeating ableist stereotypes.

As always, I welcome comments and suggestions!

Monday, September 29, 2014

Disability, Benefits, & Employment

Jennifer Lazlo Mizrahi, Huffington Post - September 26, 2014

This is a pretty good round-up of the major problems with Social Security’s disability benefit programs … SSDI and SSI … most of which relate to two basic ideas:

1. Disability means an inability to work, and

2. The ability to work is an either-or proposition.

Neither of these concepts are valid today, if they ever were.

Physical or mental disabilities often have an impact on employment, but people with any kind of disability can work for pay, given the right adaptations and opportunity. At the same time, any kind of disability can, at times, make regular work difficult or impossible, even if only temporarily. Then there is that gray area many disabled people find themselves in … able to work for awhile, at something less than full time, and not enough to earn a complete living.

Reforms like the ABLE Act are good ideas, but they don’t quite get at the root of the problem. Two thoughts occur to me:

1. Sever the connection between disability benefits and employment entirely. Make benefits eligibility dependent solely on actual disabilities and individuals’ disability-related needs, regardless of their employment status.

2. Increase subsidies to employers who hire people with disabilities.

I’m not sure these are politically feasible or even good ideas, but they are worth discussing because they might lead to a better understanding of the real relationships between disability, benefits, and employment.

Sunday, September 28, 2014

Disability.TV Podcast - Ep. 9 - Mini-Cast

Excerpts from the last two episodes, a look ahead at upcoming podcasts, and a report on how Disability.TV is doing.



Don’t forget, you can subscribe to the Disability.TV Podcast with iTunes and Stitcher.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
“Gaslighting”, Stupid Tweets, and the Persistence of Facilities

Sunday, September 21, 2014
Monday, September 22, 2014
Tuesday, September 23, 2014
Wednesday, September 24, 2014
Thursday, September 25, 2014
Friday, September 26, 2014
Saturday, September 27, 2014

Saturday, September 27, 2014

People Love “Facilities”

Exterior photo of a typical nursing home
It is one of the fundamental questions to ask about any approach to helping disabled people and their families … Should we fund services to individuals wherever they are, or fund the building of “facilities" where they can go to get services?

Since at least the late 19th / early 20th century, the answer has mostly been “build a place”. In the last 20 years or so, the pendulum seems to be swinging very, very slowly in the other direction, away from nursing homes, day treatment centers, sheltered workshops, and the like, towards directly funding the individual personnel and equipment supports people need, in their own homes and workplaces.

Aside from the functional and ideological arguments for and against disability-related “facilities,” it seems to me that “facilities” have certain specific qualities that make them appealing to non-disabled people, even though almost no disabled people really, truly like them, especially if they are aware of the alternatives.
- Building a facility is something to do for disabled people, when you’re not sure you actually know what to do for them. When there’s a facility for “that” kind of person or condition, people feel like something is being done, the problem isn’t being neglected.
- They look impressive, professional. When they are new, bright, clean, and modern, it makes you feel like you are giving disabled people “the best”.
- You can give them cool names. You can name them after a politician, a philanthropist, or even yourself, especially if you are dead.
- They have definite price tags, so it’s simple, (if not easy), to raise money for them. That is party because donors and supporters find it easy to comprehend what they are supporting. Unless they have direct experience with disability issues, most people would rather give money to build the “Awesome Disabled People Center” than to fund “personal assistance services for X number of people”.
- Facilities are easy to quantify. They have X number of “beds”. They have Y number of “slots”. The project will create over Z new jobs!
- Facilities generate lots of jobs, at all skill levels, even after they are built … administrators, comptrollers, supervisors, direct services staff, cooks, and maintenance staff.
- Facilities are great for “revitalizing" small, struggling towns. Either they refurbish abandoned buildings, or add new, impressive visual landmarks to neighborhoods.
- Facilities grant the illusion of safety, order, and control, which many families of disabled people crave … and probably some disabled people, too, though advocates like me don’t like to think about that.
Look, I know that “one size doesn’t fit all”. I know some disabled people might “need” more institutional services. Obviously, there have to be some. But no matter how nice you make them look, facilities almost always suck. If not right away, then more certainly as the years and decades go by.

Plus, once you build them, it is very, very, VERY hard to change your mind and do something different with the money. Facilities take on a life and purpose of their own, separate from the needs and preferences of the people they are supposed to serve. Personalized, directly funded services, on the other hand, can turn on a dime, and a change for one person only affects that person.

Just say no to “facilities”.

Friday, September 26, 2014

Vote For Your Favorites

Collage of disabled TV characters: Chief Robert Ironside, Addie Langdon, Artie Abrams, Jewel, Joey Lucas, Capt. Christopher Pike, Tyrion Lannister, Dr. Kerry Weaver, Corky Sherwood
This is going to be my last round of campaigning for votes in the Disabled TV Character Face-Off. If you’re not familiar with this, I plan on identifying 16 of the most loved or admired disabled characters on TV shows, and using a bracket-style face-off competition to decide who is the greatest disabled character in TV history. At this stage, you can vote for any characters you like, as many as you want. After this weekend, I will set up the bracket using the top 16 characters. If enough people want to add characters not on the list below, I may add additional characters to the competition.

If you haven’t done so already, have a look at the list, and vote for your favorites!

Create your free online surveys with SurveyMonkey , the world's leading questionnaire tool.

Thursday, September 25, 2014

"Red Band Society" - Season 1, Episode 2 Review

Photo of four characters in the tv show "Red Band Society",
Andrew Pulrang, Gotta Watch It! - September 25, 2014

I just posted my review of the second episode of “Red Band Society”. It’s getting a bit better, with some welcome small doses of reality.

Wednesday, September 24, 2014

Ken Jennings' Tweet

KenJennings
Nothing sadder than a hot person in a wheelchair.
9/22/14, 2:52 PM

A few thoughts:

- A great many “ableist” comments are sort of true if viewed from the twisted perspective of an especially ignorant or shallow non-disabled person. This Tweet, however, is not only insulting, it is transparently wrong. The conclusion is the direct opposite of the experience of just about every person who has seen a "hot" person in a wheelchair “Hot" people in wheelchairs usually make people feel happy, optimistic, even (ugh) inspired.

- There are hilarious comedians who have disabilities who make truthful, self-depracating jokes about disability, but I cannot imagine any of them riffing on how sad it is when disabled people are also really attractive.

- I find it fascinating that Jennings took the trouble to make his joke gender neutral. 

- Based on a perusal of Ken Jennings’ Twitter feed, he seems to be a nerd who desperately wants to be a duedbro. I saw several other jokes there about sexy ladies, none of them worth more than a chuckle, and only mildly, generically offensive. A real, live misogynist would find them pretty tame. I suspect he hit on this one because he’s literally brainstorming every oddball, vaguely sexy “observation” he can think of, and then rotating them directly into his feed.

- There are at least three commenters who are offended that people are offended. Because of course there are.

- Most of these jokey kinds of things don't offend me personally. They don't wound me. What bothers me is a larger question. Why is it still mostly “okay” to make jokes about disabled people?

- As of this moment, there were 180 Retweets and 367 Favorites for this Tweet, and about 70 negative comments. So, I guess Jeopardy's Ken Jennings must be right.

Tuesday, September 23, 2014

Buy It - "Sherlock", Season One

So, the question is … Is the Benedict Cumberbatch version of Sherlock Holmes disabled? Is he autistic? Is he, as the character himself asserts, a “high functioning sociopath?” If he is one of these things, and not just a weird genius, does it change how we appreciate the character and the TV show?

Whatever. It’s tons of fun, especially Season One.

"Gaslighting"

photo of scrabble tiles spelling out the word "words"
Gaslighting - Wikipedia

Yesterday, I finally looked up the precise meaning of a term I’d heard dozens of times before, but never really understood. The term was “gaslighting”, as in, “to gaslight someone”. It describes a type of psychological abuse, and according to Wikipedia, it is named after a film that depicts the practice.

As I understand it, “gaslighting” is when one person deliberately makes another person question his or her own perceptions and sanity, by repeatedly telling the person he or she is crazy, stupid, or irrational, or by engineering situations so that they actually seem so bizarre to the person, that it reinforces the idea that they have lost their minds or can’t trust their own thoughts. Reading about it in exact terms, I realize that I have seen it happen to disabled people, though I don’t think it has ever happened to me personally, and I desperately hope that I’ve never done anything like it to anyone else.

I was prompted to look up “gaslighting” by a Tweet from Heather Ure, @heatherurehere, who frequently writes about how people with various forms of autism are often victimized in this way. If you stop and think a moment, it makes a terrible kind of sense that people who actually have cognitive impairments or differences, who have already internalized doubts about their own mental reliability, would be vulnerable to someone deliberately encouraging them to doubt themselves.

The main thing I wonder now is whether we should use the same term, “gaslighting”, for both deliberate and unconscious forms of this phenomenon. The effects are awful and corrosive either way, but I can imagine people doing this to others, not out of malice or desire to deceive, but maybe out of an over-active sense of responsibility to govern other peoples’ rationality and self-awareness.

I think we all need to be alert to this risk ... not just of being the victim, but of being the perpetrator. There is a difference between giving someone we perceive to be struggling a “reality check”, and destructively undermining their self-confidence. It’s even worse if the person really does have difficulty understanding things as they are. If it's hard to keep your head together, more self-doubt doesn't help, and reminding someone for the umpteenth time that there's something "wrong" with them isn't truth-telling. Usually, it's just thinly veiled cruelty.

Monday, September 22, 2014

More Advice For Businesses

Micah Solomon, Forbes - September 14, 2014

Newspaper and magazine articles offering tips on serving customers with disabilities are pretty common, and usually quite bland. Maybe that is because providing good service and equal access to disabled customers is really pretty simple. Still, I liked this article more than most of the genre. I also really appreciated how Mr. Solomon connects with the Kanye West story … something lots of people have heard about, but who may not go beyond a surface-level outrage. Since Kanye is nothing if not a businessman, what he did should be understood as bad business as well as poor social awareness.

I’ve got a few pieces of advice for businesses, too. Again, none of it is particularly new or innovative. The problem isn’t that nobody knows how to serve people with disabilities. The problem is the lack of follow-through.

Here are my ideas:

1. Put accessibility on all of your “To Do Lists". I say “all” of your To Do Lists, not just one special To Do List, because you need to consider physical accessibility and individual accommodation strategies for all of your functions and events, and re-evaluate constantly. And you have to add us to your lists, because history has shown that for some reason, disabled people are among the most easily and frequently forgotten constituencies.

2. Tell employees it’s okay for them to break some rules and procedures if it will allow them to help a disabled customer. Good policies are no good if they aren’t implemented, and that’s done by employees, rarely by one boss. Don’t try to create a plan for every contingency. Instead empower your employees to be responsive to what each customer needs, including those who have disabilities.

3. If your business’ image is “retro”, “vintage”, “quirky”, or “hipster”, make sure it isn’t also “inaccessible”. Charming little businesses housed in 150 year old business districts are trendy and feel progressive, but they are often far less accessible to disabled people than the dreaded “big box” stores out in suburbia. Old-fashioned front stoops and a narrow little doors with cute brass knobs may be are like “disabled customers not wanted” signs. Some businesses may not have much of a choice of locations, but if you do, and if you’re putting money into decor, think about investing in accessibility. And then do it.

Sunday, September 21, 2014

ADAPT Little Rock Protests ... What They're All About


This is a really well-edited video that explains last week's ADAPT protests in Little Rock, Arkansas.

I feel like ADAPT protests always risk conveying sensational images without adequately explaining what they are protesting. To the ordinary observer, not familiar with disability policy, ADAPT protests can look spectacles whose only object is excitement and personal empowerment for its participants. ADAPT protests certainly are both exciting and empowering experiences. For disabled people, especially, there is something really ... special ... about using our physical differences and uncompromising presence to make useful nuisances of ourselves.

However, ADAPT is also an utterly practical, disciplined organization, laser-focused on very specific policy goals that are at the heart of what most concerns disabled people ... getting the help we need to survive, but with the personal control and autonomy we need to thrive as well. There are well-tested, proven, cost-efficient ways to do this that work for people with all kinds of very "severe" disabilities, and that do not involve nursing homes or similar "facilities".

That's my favorite part of this video montage, the local reporter who perfectly described ADAPT's point. We don't want more facilities that protect and control us. We want services that we control and that liberate us to live and work in our own communities like everyone else.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
History, Red Band, and Game Of Thrones.

Sunday, September 14, 2014
Monday, September 15, 2014
Tuesday, September 16, 2014
Wednesday, September 17, 2014
Thursday, September 18, 2014
Friday, September 19, 2014
Saturday, September 20, 2014

Saturday, September 20, 2014

In The Driver's Seat


Charisse Hogan, Shared Abilities - September 20, 2014

I wish Charisse’s video had been available when I was young.

I learned to drive during my Senior Year in college, which isn’t really all that late, I know. At the time, though, it felt like I was finally getting around to trying one of the few things I had put off in my life specifically and solely because of my disability. It was scary and alluring at the same time. And the first, most important obstacle actually to experience the physical sensations of driving. After literally only about 10 minutes of tentative driving in an empty parking lot, with an instructor and a driver’s seat piled high with with text books and pillows, I knew that driving was going to be possible. In fact, I quickly got the feeling that it wasn’t even going to be that difficult. Before that, I couldn’t imagine doing it.

Maybe that’s a disability thing. We have a little more trouble imaging in doing certain things other people do, and there are both physical and psychological hurdles to even trying.

I was also very fortunate not to be tied in with a formal training program of any kind. I hired a local high school driving instructor who also had a talent for adaptation. He worked up the measurements for changes to the driver's seat and pedal blocks, which a local car customization shop implemented. Of course, I didn’t have any neurological issues to deal with … for me it was mostly about my height. I often wonder how things would have gone for me if I had needed adjustments more completed than a lifted and tilted seat.

Anyway, given the scheduling difficulties she mentions, it’s great that Charisse started the process early. If she gets her license this year, she’ll have gotten it a year earlier than the age I got mine.

Friday, September 19, 2014

Disability.TV Podcast - Game Of Thrones, Part 1

Disability.TV logo on the left, game of thrones poster on right with face of Tyrion Lannister
On this week’s episode of Disability.TV, Alice Wong and I discuss Tyrion Lannister, the most prominent and loved of many disabled characters on “Game Of Thrones”. You can find Alice’s commentaries on disability issues and popular culture at the Disability Visibility Project, The Nerds Of Color, and on Twitter @SFdirewolf.

Upcoming Podcasts

September 26
Mini-Cast

October 3
Game Of Thrones - Part 2
Guest Co-Host Alice Wong

October 10
Mini-Cast

October 17
Glee
Guest Co-Host Cheryl Green

October 31
Ironside (2013)
Guest Co-Host Kamilah Proctor

Click one of the links to subscribe to the podcast at iTunes or Stitcher.

Thursday, September 18, 2014

Video Of The Day


It seems appropriate to embed this Amputee OT video, seeing as how two of the main characters on “Red Band Society” are amputees. Another detail I didn’t mention was that Leo never wore a prosthetic in the Pilot, at least not that I noticed. Since it isn’t clear how long ago his leg was amputated, so maybe he’s not ready for one yet, but it could be just another authenticity fail on the part of the writers.

Red Band Society - Pilot

I just posted my review of the “Red Band Society” Pilot episode. There are lots of flaws here, but with luck, some of them could turn into assets if the writers have the understanding and courage to make it happen. I think those of us who have disabilities, and had them in our youth. will find enough here to keep us engaged, and not entirely consumed with nit-picking.

Andrew Pulrang, Gotta Watch It! - September 18, 2014

Stay tuned. I’ll be reviewing every episode of this first season, on Thursdays after Wednesday night airings.

Wednesday, September 17, 2014

Meanings Of "Special"

Arianna Prothero, Education Week - September 16, 2014

This is one of the best articles without a definite axe to grind that I have read about inclusion vs. self-contained special education.

I have a feeling that one of the factors influencing why some parents of disabled kids move away from inclusion, towards "special", disability-focused charter schools is that people with different backgrounds and life experiences have different ideas of what "special" means.

To some, "Special" is:

Notable, remarkable, tailored, individualized, enriched, prestigious.

To others, "Special" means:

Stigmatized, ostracized, relegated, segregated, sheltered, excluded.

Some peoples’ experiences of “special” are positive, suggesting consumer goods and services that are individually crafted, made to order, as opposed to manufactured and standardized.

Others understand “special” more in terms of unwanted attention, deprivation, even punishment.

Sometimes, the word “special” drips with irony and smarm. It's a euphemism. It's supposed to be a good thing, but isn’t always meant that way.

Other times, it’s more straightforward. Sometimes "special" really means "better" or "exceptional".

For some of us, the idea of "special" schools will always have a sinister connotation. For others, "special" schools suggest students who are cherished and given generous attention, with the most advanced and expert educational techniques.

The flip side, of course, is that some view "mainstream" public schools as the most promising way to ensure inclusion and capability in adult life, while others see them as rigid, bureaucratic institutions where anyone different is neglected and uniqueness is ground down into bland conformity. Or worse, they are ultra-competitive and socially ruthless, while "special" schools are safe havens where especially sensitive, atypical students have a better chance to thrive.

All of these images and feelings are in active play, related to but also separate from verifiable, quantifiable facts about how education of kids with disabilities works, what it does and doesn’t do for them, and how it succeeds and fails to meet parents’ needs and expectations.

I find whole topic complicated and upsetting.

Tuesday, September 16, 2014

Buy It - Game Of Thrones, Season One

Season One introduces us to two of the series' many fascinating disabled characters ... Tyrion Lannister, a.k.a. The Imp, a.k.a. The Half Man ... and Bran Stark, the young son of Eddard Stark, and a paraplegic. Seeing the very different roles these characters play in the sprawling story shows the different ways disabled characters can function on TV shows.

If you haven't watched the show, what are you waiting for? And don't forget to tune in to my Disability.TV Podcast discussion of disability on "Game Of Thrones", with Alice Wong (@SFdirewolf), posting this Friday, September 19.

T4 Monument

Andreas J├╝rgens, Deutsche Welle - September 2, 2014

Melissa Eddy, New York Times - September 2, 2014

Remembering the Nazi T4 program is important, and not just in the "don't forget about us" sense. The reasons why disabled people were targeted were in many respects similar to why other groups were targeted, but in other ways different.

On the one hand, Nazis argued that life with disabilities was intolerable for the disabled themselves, and that killing them was an act of compassion.

I have seen footage from Nazi propaganda films that push the supposed wretchedness of life with a disability by showing disabled people living in neglect and squalor. It's a more distilled version of how people today conflate the stigma and bureaucratic nightmares imposed on disabled people with the experience of disabilities themselves. We treat disabled people horribly, then look at them and note how horrible it is to have a disability. Treating disabled people better doesn't seem to be taken seriously as an alternative solution. Instead we get increased support for "assisted suicide", and in the Nazi's case, forced euthanasia, (i.e. medically murdering disabled people).

Nevertheless it’s an interesting difference. I may be wrong, but I don’t think the Nazis ever tried to justify killing Jews, Homosexuals, and Communists by saying that it was a kindness to them.

At the same time, Nazi theorists argued that disabled people were an unproductive drain on the state's resources, a negative drag on the ongoing biological improvement, strengthening, and purification of the German race. So really, it didn't matter whether killing disabled people was compassionate or not. It was good for the state, and good for the race, and for the Nazis, that was reason enough.

Both arguments ... compassion and the good of the state ... were full of shit, but you can still hear echoes of those arguments today. It is striking how often discussions of, say, assisted suicide start out citing individual choice and the compassionate end to someone’s suffering, and then morph into musings about the high cost of sick peoples’ final months and the “wastefulness” of “extending" peoples’ lives with “machines”.

We need this specific memorial to this part of the Holocaust because we need the reminder that horrible policies aren’t only enacted for explicitly horrible reasons. Sometimes, they develop out of ideas that seem to some to be eminently reasonable, even progressive.

Monday, September 15, 2014

#JusticeForIssy

Illustration of stacked newspapers
Shannon Des Roc, BlogHer - September 11, 2014

Disability Visibility Project - September 15, 2014

Some more thoughts on sympathy for parents who murder disabled children:

- In general, I support discussing how systemic failures and economic injustice can partially explain some individual violent crimes, including murders and suicides. But it seems like the only widely accepted context for such discussions is with the murder of disabled children. Similar discussions involving other kinds of people and situations … such as gang violence and school shootings … are generally despised as excusing and coddling criminals. Somehow, though, killing disabled people is in some way "understandable". How can that be anything but galling and scary for people who have disabilities?

- We absolutely should talk more about the unacceptable delays and gaps in support services to parents of kids with disabilities ... but never in connection with the murder of disabled children. We cannot afford to undermine the idea that disabled children … even the most difficult and baffling … are sentient human beings.

- We shouldn't assume that parents who go off the deep end are always ill-served. Some fumble or even reject opportunities for support, out of confusion, exhaustion, or failure to recognize promising pathways when they appear. Some parents also find it hard to engage support because they feel it's a weakness to ask for help, or because they are terrified of being judged or losing parental authority. All of these can be legitimate concerns, but are never enough to justify, or even properly explain, murder.

- When we do discuss systemic failures, we also need to discuss the influence of well-funded, popular, but unhelpful, wrong, and destructive ideas about disability and child rearing that are regularly fed to parents who often don't even know there are other points of view. With autism, especially, parents urgently need to be told that no matter how mystifying their behavior and communication might be, autistic children are first and foremost people, not wild animals or tortured, miserable monsters.

- One reason why a note of sympathy keeps coming up in cases where parents murder their disabled children is that by and large, people find it easier to identify with frustrated parents at the end of their rope, than with children who have what seem like mysterious, frightening disabilities.

- To repeat … discussing the lack of support for parents is fine and necessary, but NOT IN CONNECTION WITH ACTUAL MURDER OR ATTEMPTED MURDER OF DISABLED CHILDREN OR ADULTS. It should be a taboo, indecent, simply not done.

Historical Reminder

“Each refused to surrender to physical limitations that might have destroyed them.”
— Narration about Theodore and Franklin Roosevelt, in Ken Burns’ documentary, “The Roosevelts: An Intimate History”
When we question the idea of “overcoming” disabilities today, we should occasionally remember that not so long ago, many if not most disabilities really did threaten to “destroy” people, either directly or indirectly. Many disabilities still do, today, but the line between illness and disability then was far more blurry then as it is now.

Sunday, September 14, 2014

"Red Band Society" Followup

Picture of an old style TV set with the wheelchair symbol on the screen
Lillie Lainoff - Washington Post - September 12, 2014

I saw this article only minutes after posting my piece yesterday on upcoming new TV shows with disabilities themes, in which I expressed some cautious optimism about "Red Band Society”. After reading the article, I’m a bit less optimistic, but I will still be looking for positives I think may be there.

One problem may be the rather hard to define but in some ways crucial difference between chronic or terminal illness … like cancer or cystic fibrosis, and disabilities … like being an amputee or a paraplegic. As I mentioned yesterday, the line is blurry. However roughly speaking, one group copes more often with active pain, illness, and unpredictability. The other group has to focus more on adaptation and social integration. One group may or may not survive. The other probably will, for the long haul, while their disabilities will always be with them. It looks like this show will mainly be about illness, not disability. My interest is partly in seeing how the two kinds of situations can be both different and similar.

I agree with Ms. Lainoff that another big problem is how the hospital will be portrayed. I think they might get away with giving us such a happy, nurturing hospital with so much freedom granted to the patients, if the show made clear that it is some kind of special, innovative institution designed specifically for seriously ill teens. Maybe they talk about that in the Pilot, but Ms. Lainoff didn’t mention it, so I’m doubtful. It’s okay to show an atypical, idealized setting, as long as there is some explanation for that. Otherwise, it’s just rose-colored glasses.

As for how Red Band Society’s characters represent chronic illness or disability, again it makes a difference which thing they want to represent. A cheerful representation of chronic illness will seem more fraudulent than if they really mean to portray disability. Maybe the writers and show runners are confused. Non-disabled people who create movies and TV shows are very easily confused about the ideas and ideals they think they are presenting.

Weekly Wrap-Up

Disability Thinking Weekly Wrap Up in white letters superimposed over sepia-tone photo of handicapped parking spaces
Tips, Freak Shows, and Friday Night Lights.

Sunday, September 7, 2014
Monday, September 8, 2014
Tuesday, September 9, 2014
Wednesday, September 10, 2014
Thursday, September 11, 2014
Friday, September 12, 2014
Saturday, September 13

Saturday, September 13, 2014

Fall TV Alerts

Picture of an old style TV set with the disability symbol on the screen
Two TV shows premiere this week that in different ways deal with the disability experience: Red Band Society, and the new Ken Burns documentary, The Roosevelts: An Intimate History.

I am absolutely locked in for the "The Roosevelts." As a former history major, a political junkie, and a disabled person, it’s a trifecta. Both Theodore and Franklin Roosevelt are iconic historical figures and political pioneers … not to mention Eleanor’s leadership on so many issues. Franklin, of course, spent most of his adult life and all of his Presidency dealing every single day with the paralysis that resulted from Polio. But from what I can recall in my somewhat less intensive reading about Teddy Roosevelt, it seems like he, also, dealt in a way with what today we would call disabilities. He was certainly a “sickly” child. And although I don’t believe his conditions continued into adulthood, most historians believe that his early experience of “weakness” and “frailty” profoundly affected Theodore's personal philosophy, and maybe even his political outlook.

I wonder if Burns will make that connection. In fact, I am a little nervous to see how he handles FDR’s polio, too. I hope he doesn’t confine it to one episode and then leave it behind once Franklin resumes politics. I also hope Burns calls upon more recent historical accounts that undercut the idea that FDR kept his paralysis a total secret. He might even include a few interviews with James Tobin, author of a very recent book on the subject I reviewed back in January.

Here are two relevant scenes from Burns’ film, available on the PBS website:



These key parts of the series seem to be set for Wednesday evening. Unfortunately, so is the premiere of "Red Band Society" on FOX.

I will be reviewing each episode of this new show for the TV website Gotta Watch It!, but I’m going to wait until winter, probably, before doing an extensive discussion of it on my Disability.TV Podcast.

If the show itself is any good, it looks like it will explore many different aspects of the disability experience … institutionalization, the strengths and flaws of the medical model, camaraderie among people with diverse disabilities, disabled people struggling for freedom and agency, and the murky boundaries between disability and life-threatening disease. Of course, if the acting, writing, or filming are sloppy or lazy, then it won’t be worth watching regardless of any positive messages it might try to send. Plus, dealing with these interesting disability issues doesn’t mean the show will deal with them well. I’m a little concerned that they’ll try too hard to portray the hospital as “fun” all the time. On the other hand, I love the idea of these kids bonding, helping each other out, and trying to wriggle out of the medical model control they are under.


I am looking forward to finding out if it all works.

Friday, September 12, 2014

Schedules

illustration of weekly schedule with color coded items
It Keeps Going - August 20, 2014

(Via the Wheelie Wifee Tumblr blog)

This blogger goes on my favorite disability blogger list because she focuses on practical ways to combat depression, aimlessness, and inactivity … risks I think disabled people face more than most. This is especially true for those of us who do not have jobs. There are usually good reasons why we don't, but whether or not you are even in the market for a job, it can get really depressing when it seems like you have nothing to do every day.

I would like to note three more benefits for disabled people of making and using a schedule, beyond the benefits discussed in the article:

1. It keeps you ready for the rhythms of employment, in case the right opportunity comes along to get back to the workplace.

2. It provides you with coherent answers to job interview questions about what you’ve been doing while unemployed.

3. If you need to apply for disability-related benefits, a detailed daily schedule can help document the extent and limits of your activities.

For my schedule, I use Apple Calendar and Todo, applications that work on my Macintosh computer and iPhone.

Disability.TV Podcast - Friday Night Lights

Disability.TV logo next to Friday Night Lights tv show poster
On this episode of Disability.TV, Maddy Ruvolo and I discuss the critically acclaimed series about the high school football town of Dillon Texas, and one of the longest running and nuanced disabled characters on TV, Jason Street. You can find Maddy on Twitter @maddyruvolo, and at the Disabled Girls Talk Podcast, which she hosts along with Emily Ladau.



Upcoming Podcasts

September 19
Game Of Thrones - Part 1
Guest Co-Host Alice Wong

September 26
Mini-Cast

October 3
Game Of Thrones - Part 2
Guest Co-Host Alice Wong

October 10
Mini-Cast

October 17
Guest Co-Host Cheryl Green

October 31
Guest Co-Host Kamilah Proctor

Click one of the links to subscribe to the podcast at iTunes or Stitcher.

Thursday, September 11, 2014

Pistorius Verdict - Part 1

BBC - September 11, 2014

The BBC quotes from the judge’s initial decision, that Oscar Pistorious is not guilty of premeditated murder, but that she will pass a sentence on him tomorrow for “culpable homicide”:
"The accused had reasonable time to reflect, to think and conduct himself reasonably.
"The accused knew that there was a person behind the door, he chose to use a firearm which was a lethal weapon, was competent in the use of firearms as he had received training," she said.
The judge also took time to reject the defence arguments that Mr Pistorius is more likely to confront danger because of his disability - both his legs have been amputated.
"Vulnerability is not unique - There are many people in this country without any form of security at all," she said. [Emphasis mine]
Whatever else comes out of this case in the end, this rather oddly worded statement nevertheless addresses the disability issue pretty effectively. Disability can certainly be a vulnerability when it comes to the threat of physical violence. However, it would be too much to give everyone with a verifiable vulnerability extra leeway to shoot people. Each case should be judged on its individual merits, and there are many situations where disabilities aren’t vulnerabilities at all.

That, coupled with the fact that the judge says Pistorius did not act reasonably, actually says quite a lot.

Wednesday, September 10, 2014

4 More Tips For Parents

Mary Evelyn, What Do You Do Dear? - September 5, 2014

This is a terrific article with great advice for parents of disabled kids, and kids with disabilities themselves. Slack-jawed stares and uncomfortable questions are often the first and most frequent encounter disabled people have with the social stigma of disability. So, I would like to add four more suggestions for parents on how to help their children handle disability-related pointing, staring, and asking.

1. Age makes a difference ... the age of your child, and of the person doing the pointing, staring, or asking. If you child is older than the person asking the questions … if your child is a teen and the other kid is 5 years old … it's a good opportunity to help your disabled child take on age-appropriate responsibilities. Teach them that as the older child, they should be a little kinder and more forgiving to the younger child than they might want to be. Help them recognize situations where they can help make someone more comfortable with and respectful about disability.

2. Help your child recognize situations where frank disability questions are okay. For example: doctor’s appointments, certain educational settings (though not necessarily all of them), and dealing with police, firefighters, and EMTs.

3. Empower your child to establish appropriate personal boundaries. Teach them effective, constructive ways to respond when people cross those boundaries. Let your disabled child know they have a right to be treated respectfully, and that they don't have to put up with everything from everybody, even from adults, just because they have disabilities and need help and supports that most other people don’t. It’s good to be appropriately grateful. It’s dangerous to feel beholden.

4. Help your disabled child develop effective and efficient ways to explain their disabilities to others. Having a brief, straightforward answer to the most “frequently asked questions” can be practically helpful, and give one added confidence.