Don’t forget, you can subscribe to the Disability.TV Podcast with iTunes and Stitcher.
Sunday, September 28, 2014
Disability.TV Podcast - Ep. 9 - Mini-Cast
Don’t forget, you can subscribe to the Disability.TV Podcast with iTunes and Stitcher.
Weekly Wrap-Up
“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”
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
If you haven’t done so already, have a look at the list, and vote for your favorites!
Thursday, September 25, 2014
"Red Band Society" - Season 1, Episode 2 Review
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.
- 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"
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
How To Fix Your Service Experience For Customers With Disabilities -- What Kanye Should Have Learned
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
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
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
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