Description: A white person’s right arm in a (self-described) terminator-esque arm brace. It has thick black straps supporting the upper arm, a huge dial on the elbow, and more thick straps on the lower arm

Daily Access Irritations: The Moan Meme

I thought I’d rant a little about the access irritations I encountered today.

Today I’ll complain about inaccessible elements of the environment which nominally increase access. Otherwise known as “access theater,” or access done wrong, it’s particularly infuriating.

Implementation of Low Vision Rehabilitation Advice for People with Intellectual Disabilities

People with intellectual disabilities are at a very high risk of visual impairment, often due to undiagnosed refractive errors and cataracts. Oftentimes, however, these people are being cared for in facilities that do not have knowledge about low vision, and do not know how to detect it. Low vision centers in the Netherlands take a pretty proactive role in screening for visual impairments in people with intellectual disabilities. However, it doesn’t help much if the advice these centers give, for example for glasses or lighting, is not followed up on by the intellectual disability facilities the people live in.

Miscellaneous Thoughts on Parenthood [NBC series]

-Shockingly (or not), the behavioral therapist turns out to be a Magical Therapist who not only helps Max play with another child, but gives soothing advice to his mom–allaying her fears and improving her sex life. All in one afternoon!

It really bothers me to see people who work with autistic people portrayed as saints with no obvious flaws, which is what this therapist character (Gabby) seems to be so far. Because obviously anyone who would choose to work with autistic people must be a saint, by definition. Far too many people actually believe that kind of nonsense, which obscures the very real power which therapists hold over their clients, and the very real potential (and actuality) of abuse. It’s just really, really uncomfortable. Pretty Nice Behavioral Therapist Girl holds power over the children she works with.

Being inclusive vs not being exclusive

This is something I come across once in a while, and have had at least one argument with someone over. A group of people put on some creative project, and someone notices that there’s a lack of representation of X Minority for whatever reason, sometimes noting that they themselves are in the minority. The people organising the project get defensive and say “But we’re not excluding anyone! We are open to everybody! They just need to sign on!”

There is a huge difference between not being exclusive and being inclusive.

In the eye of the beholder

But we have entered into another phase of the understanding of beauty. We are staying, right now, in a huge resort north of Toronto. It’s on the way to the consultation and will cut our driving down by several hours. We decided, what the heck treat ourselves. Into a huge lobby, up to a luxurious room. Wow. Then Joe went into the bathroom and said, breathlessly like he has when listening to Madama Butterfly or contemplating a painting by Turner or finishing a book by Furst or by watching that nude scene in A Single Man … it’s, it’s, beautiful.

One Can’t be a Cutup when one is talking about Cutouts

The guidelines for my suggestions of “ideal cutouts” are simple:

1. All of the ADA style guidelines related to angle and such (not crucial for me with the iBot or most powered chairs, but much more important for scooters that can’t handle angles, manual chairs, or people that might have trouble with the angle);
2. Always have the ramp be at a complete 18090° with the street it is bisecting, with a consistent and equal upward trend until it reaches the top.
3. Keep the direction of the inclination be the same as the direction of travel, without requiring left/right “yaw” adjustment.
4. Have the cutouts as close to the curb as is feasible.
5. Position the cutouts firmly in the crosswalk’s span.
6. Keep the cutouts on opposite sides of the street that assume a lateral connection lined up with each other.
7. When fancy painting/grooves are done, have the paint/groves match both the angle and the direction of the inclination (i.e. if any of the previous two points — especially points 2 and 3 — are not done, do not use the paint/grids as if they were).
8. Remember that Functional > Aesthetically pleasing but impractical > impassible (by which I mean impossible).

Headlines:

US: Appellate court rules [service] dogs ineligible for food stamps

Just to let y’all know, we’re going to be splitting up Recommended Reading duties among FWD contribs for a while, starting tomorrow!

Another short one today – the stuff in my personal life is ongoing. I’m sorry.

The cost of art

As I know that with Palmer’s projects and statements, there are things I might miss because I am able bodied, because I am privileged as Palmer is herself. I know that I have been made to think about the ways I think of disabled bodies and about the history of racial violence and murder in this country. I have been forced to examine myself, to see the ways in which I am no better (or maybe worse) than Palmer. But when the time came and is still coming that opinions about the disabled, about them speaking up for themselves are formed, when people insult and laugh at and ignore and disregard the disabled, accuse them of faking it or belittle them, or use them as tools to be “inspirational” to able people, it will not be Palmer who bears that cost, who gets hit in the face. When it comes time for people to handwave away murder and torture and the history of racial violence in this nation and how the images and words connected with it still hurt for some but are meaningless for others, Palmer will not be hurt by that. Palmer will not pay the price for it. Palmer will surf the wave of controversy and sadly free publicity to interviews and sales and she will laugh all the way to her bank.

Because it comes down to this, as I’ve said before. When the price for art and statements about art came around, Badu paid up, in full, on time, and without hesitation from her own metaphorical coiffers, and it is becoming a steep price. Palmer passed the buck onto those who have already paid so much for the statements and “art” and “irony” of others. The price is steep, but she is not and never will truly be on the hook for it. Because she chose other bodies, other selves to put in the line of fire.

Sometimes the Best Self-Advocacy is Shutting the Fuck Up

I really, really don’t want to write about disability for normal people.

I don’t want to explain that I don’t see people as objects. I don’t want to explain that I’m not just imagining that I have a disability. I don’t want to have to make an analogy where I go, “Some people with cerebral palsy can talk and some can’t, they all have cerebral palsy, and it’s the same with autism spectrum disorders.” (Also, who knows if people will even get that. My dad thinks that the reason CK can walk is that he’s really energetic and determined.)

I have recently been trying to have these conversations with my mom. I don’t know why. I just get told that, for example, I should imagine why someone might kill their kid with a disability. This really upsets me because it’s not that I don’t have compassion for people who do bad things, but constantly reminding me to have compassion for a particular group of people who do bad things seems to imply that what they do is less bad than what other people do.

Normalization Wastes Energy

In contrast, I was two years old and, according to my mom, not talking yet, not looking at her, and with a laundry list of other difficulties that she had not anticipated at the time that I was diagnosed. In addition, the coverage given to the issue of autism was being filled with more and more fear-mongering and talk about early behavioral “interventions.” The way this impacted me mostly involved my parents placing me in some of these programs to ensure that I didn’t end up like Rainman or the difficult autistic children they read about in nonfiction books that were rife with “tragedy” talk. These involved things that helped, such as speech lessons and OT that taught me a little bit of cooking in addition to some sewing and knitting as well as being a time when I could calm down and “recharge.”

However, there were also things that have tainted my life experience forever. Because I was autistic, it was considered justifiable for teachers to twist my head around so that I would make eye contact.

US: Cancer Clusters in Florida Worry Parents

After months of prodding, Florida’s health department began investigating. This year, the agency concluded that The Acreage was the site of a cancer cluster.

The finding was a vindication for some, but what followed infuriated many: A state health official said there was no plan to search for an environmental cause. Residents and elected officials protested, and that position was quickly reversed. But many residents in The Acreage remain suspicious about the state’s commitment to the investigation.

US: Constance McMillien, and “two students with learning difficulites” were sent to a fake prom. McMillen: I Was Sent to Fake Prom

“They had two proms and I was only invited to one of them,” McMillen says. “The one that I went to had seven people there, and everyone went to the other one I wasn’t invited to.”
Last week McMillen asked one of the students organizing the prom for details about the event, and was directed to the country club. “It hurts my feelings,” McMillen says.

Two students with learning difficulties were among the seven people at the country club event, McMillen recalls. “They had the time of their lives,” McMillen says. “That’s the one good thing that come out of this, [these kids] didn’t have to worry about people making fun of them [at their prom].”

‘Breaking Bad’ actor RJ Mitte finds ‘perfect role’ prepared him to become an activist

While winning the role may have been serendipitous for R.J., what he is making out of the opportunity is quite deliberate. It has allowed him to discover himself — not only as an actor but also as an activist for the rights of people with disabilities in the entertainment industry.

He has become a spokesman for I AM PWD (Inclusion in the Arts and Media of Performers With Disabilities), an advocacy campaign sponsored by three entertainment industry unions — Screen Actors Guild, American Federation of Television and Radio Artists and Actors’ Equity Association.

The campaign highlights long-simmering issues regarding people with disabilities in the entertainment industry — access, inclusion and accuracy of portrayal.

I’m sorry this is short today – something came up in my personal life.

Assumptions: Unfair & Not Unfair

This is an ethics professor discussing the ethics of caring for patients whose injuries were, in our view as physicians, “brought upon themselves”, or for patients whom we don’t necessarily like.

Racist, Sexist, and Homophobic

I posted Monday about the “Writing the Other” panel at Millennicon. Today I wanted to address one of the comments. Jim Van Pelt … described an academic panel in which the moderator opened by saying, “If you are white, male and straight in America, you are also, automatically racist, sexist and homophobic.” Comment link here.

This next part is scary to write. To be clear, I’m not talking about you. I’m not talking about Van Pelt. I’m not talking about anyone except myself, ‘kay?

That moderator is correct. I am a straight white male raised in the U.S. I am also racist. I am sexist. I am homophobic.

How the left enables the right’s racism: The Obama rape comic TRIGGER WARNING

But what really got my side-eye going was AlterNet’s accompanying article to the cartoon, where I originally saw the cartoon. Once again, it’s another progressive dismissal of racism and racists as “something” thought/said/done by “them” over “there.” Of course, the post’s intent (sigh) is calling out the blatantly viciously anti-Black bigotry while offering some sort of “compassion” to those “afflicted” with the “racist condition.” Well, sort of.

…

However, calling out racism as a “mental illness” both enables the racism and is ableist to those with differing mental and physical capabilities than the “able-bodied.”

Fighting Ableism Fights Sexual Assault TRIGGER WARNING

Women with disabilities are more than twice as likely to be victims of rape or sexual assault than women without disabilities. More than twice as likely than what is already a terrifyingly high probability of being a victim of rape or sexual assault. I myself am a woman with a mental health disability who is also a victim of sexual assault, and seeing this statistic always makes my stomach drop and my muscles tense. But when I think about it, what influences that statistic, it makes perfect sense. Rape and sexual assault are crimes of power and control. Women with disabilities are subject to sets of interlocking, intersecting oppressions on the basis of their gender and their disability status. Both gender-based oppression and disability-based oppression separately accept and even encourage abuse and denigration of people in those groups. So of course it makes sense that sexism and ableism would add to each other, reinforce each other’s power, resulting in the heightened vulnerability to assault reflected in the statistics.

Power

The media world hasn’t stopped writing bad articles about disability in general and disability and dance in particular. I will run right over the next person who uses the “inspiring” word. There have been some truly shocking things — things that should call us as moral humans to action — but for some reason, I find myself lacking in outrage and anger. I am so happy that it is Spring. I am on a retreat, in some kind of refuge, relaxing in the city. Mildness is the word of the day.

We leave again on Monday; I have the weekend to finish my laundry, clean my brushes, recheck my chair, and pack (at least I now have a check list). When I was first packing for this trip a couple of weeks ago, I dug out my fleece pants and fleece-lined tights (these things are just awesome). Now, I am thinking about light blouses and cotton yoga pants. The weather has changed and with it my sense of place in the world.

Special Autism Fools Day Link-o-Rama

When T.S. Eliot said that “April is the cruelest month,” he truly got it right. For you Normals (using the word in a humorous context, of course…), it may be hunky dory, what with all the opportunities to make yourselves look and feel charitable by simply giving money to any autism charity organization that advocates for a cure. However, for us autistic people Autism Awareness Month is often aggravating.

Fire in the Frost: Fiesty Olympians Defy the Odds

Despite being born with the use of both legs, many of these bipedal athletes inspire us with their commitment and guts. Having typically learned to walk around the age of one, these amazing Olympians don’t let their lurching two-phase locomotion hold them back. Thought they may look unwieldy to the naive eye, as viewers their movements soon look natural to us. We can see their grace and nimbleness shine through.

Two-legged skiers don’t let their long bulky hindlimbs weigh them down on the slopes; they have learned to use them to the fullest to guide their path down the mountain. In the freestyle aerial competitions, they inspire us as they twirl against the blue Canadian skies, looking almost graceful – unless they fail to keep their dual legs parallel, a particularly common trap for skiers in this event! Sighted skiers seem to remain undistracted by seeing objects near the course while hurtling down the slopes. They handle their unique visual issues well, managing to put aside most distractions and focus on the task at hand. These skiers don’t let their vision stand in their way on the snow!

New Childcare Subsidy Regulations

Last April, when I finished my exams, you gave me 90 days to find a job before I lost my childcare funding. You understood that jobs do not appear out of thin air, they take work to aquire. This year, you decided that I am to lose my childcare space the day the exam period is over.

Now I ask you, Mr. Neo-liberal Policy Maker, how am I supposed to find a job without daycare? You say I can look for work while my children are in school. I accept that premise, but what you don’t answer is what I am supposed to do when I find a job and have already lost my daycare spots? I will have to turn down the job because I won’t be able to go to work without daycare- especially because my son is in kindergarten, and, as such, is not yet in school full-time. It took me 3 years to get through the waiting list at the daycare my children need to be in for me to attend grad school in September because it is the only childcare center in the city that is open later than 6:00 and my classes will run in the evening. That means that if I lose this daycare spot, I may not be able to go to grad school in September. But I’m glad you saved a few dollars.

An Immortal Story: The Immortal Life of Henrietta Lacks

There is so much that this book makes you think about: medical ethics (using cells/doing research on people without consent happened a lot–note the Tuskegee studies, and the question of ownership of bodies), the role of women (along with issues of abuse, equality in the workplace, the role of a mother), education, health insurance (Henrietta’s family is still unable to afford health insurance today) and how all those issues are affected by race and social class (i.e. because Henrietta was a black female she didn’t go to school; lower class people live without health care because they can’t afford it, etc.). In writing about all these subjects, Skloot herself becomes part of this family’s story which adds even more heart to it. She writes about it all with a knowledge of her subject and a compassion for the people she profiles, interviews, and—sometimes—lives with, all while giving well-deserved, belated recognition to the woman behind HeLa.

On Autism Awareness Month

Growing up with autism in my world has taught me a lot about communication…about the power of sound, the meaning behind high pitched wails or low rumbling laughter.

Autism has taught me the precious value of a hug or a kiss…of eye contact or a quick glance…of a tickle and the giggles it inspires.

I have lived my entire life with autism.

For me and mine, autism is…it just is. Sometimes it’s a pain in the ass and sometimes it is the most amazing thing, but autism is a constant thing not limited to months or years or days when walks take place.

If you do nothing else today, read this

Let’s imagine for a moment that you are long into the public mental health system. You have been in the hospital multiple times, in a couple of partial hospitalization programs, and have spent years in sheltered workshops and day programs. You’ve received the Prophecy of Doom, “Too sick for too long to get any better.” You’ve heard plenty of statements beginning with “You can’t, You won’t, and You will never.” You’ve been told endlessly that something is intrinsically (genetically) wrong with you and the only thing that will truly save you is a medication yet to be discovered. You’ve also been told that the most important thing you can do is get on SSI or SSDI in light of the prolonged and persistent nature of your illness. You’ve been told to engage in meaningful activities generally limited to walking, listening to music, and reading. You’ve been told countless times to avoid any stressors which might be associated with more rewarding activities and these stressors will doubtless lead to yet another hospitalization. You’ve been told so many things.

Headlines:

Military plans to test brain-injury therapy

Burger King ad featuring its mascot as crazy offends mental health organizations NOTE: Unless the author has gone ahead and changed it since I posted it, this article is basically making fun of the idea that anyone would think that there’s anything to the criticism.

Via Sweet Machine: Cinemas turn up lights, turn down sound for families touched by autism: AMC and Kerasotes Theaters adjust theaters’ lighting and sound, while letting people with autism and their families clap, dance and sing