Monthly Archives: April 2010

Words, Language, Context

I had a conversation with Dorian the other day after he posted You Don’t Get It on his personal blog. He said:

My brain doesn’t really work like everyone else’s. So when you say you “know exactly what [I’m] going through”? You don’t, really. You know the same result – a paper not getting written. But you don’t really seem to explain the process that gets me to that point in my brain. It’s frankly kind of agonizing–I want to write that paper pretty badly! You don’t get it.

People didn’t like this comment of Dorian’s. [It also went ’round Tumblr for a bit.] One commenter said:

What exactly do you want people to say when you describe something like this? That you are the only one that goes through it? I can understand the hardship that you may be going through but that doesn’t mean someone else can’t experience too.

When I responded to this, I took the analogy away from struggling to complete tasks and to something that most people will see as a “real” disability [yay, disability hierarchy!!!!].

I do not have a chronic pain condition, nor do I get migraine headaches. When I’m in pain, my joints ache. I feel tired. My muscles are sore. I want to lie down.

I take some over-the-counter drugs, or have a bath, or nap, and usually wake up with little to no pain and go about my day.

When Don talks about his experiences, he talks about being in pain. His joints ache. He’s tired. His muscles are sore. He wants to lie down.

He takes a wide assortment of drugs: two doses a day of 12-hour morphine, a daily dose of oxycodin, the associated drugs to deal with the side-effects of both of those, and a few other things lying around for “breakthrough pain”, one of which we have to sign for before we take it out of the pharmacy, and another of which our regular pharmacy doesn’t carry routinely. He’s a full-time wheelchair user so he can leave the house more than once every few weeks. He spends most of the day lying down.

We use the same words to describe our pain.

Dorian also uses the same words to describe his difficulties in completing tasks that I do. When I’m procrastinating, I’m quite happy to tell anyone who will listen (and several who will not) that I’m procrastinating and having troubles and words won’t come and make my essay/blog spot write itself now please.

But my troubles are not the same as Dorian’s, anymore than my pain is the same as Don’s.

We just use the same words.

My point isn’t that people with disabilities need to use different words or that currently non-disabled people need to use different words. It’s that words come with context. When Don says he’s in pain, he’s typically talking about his chronic pain condition. When I say I’m in pain, I’m typically talking about having sat wrong for a few hours.

Context matters.

Recommended Reading for April 8, 2010

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

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!

Quickhit: Kelly Vincent elected to Upper House in South Australia!

The results have been declared!

Kelly Vincent and Natasha Stott-Despoja

Image: A smiling Kelly Vincent, Dignity for Disability candidate, with a blue flower in her hair and holding a bouquet of pink roses, sits next to former leader of the Australian Democrats Natasha Stott-Despoja.

South Australia State Parliament gets first disabled politician*

Labor and Liberal won 4 seats each with the Greens and Family First each winning a seat.

The make-up of the new Legislative Council will now be Labor 7, Liberal 8, Greens 2, Family First 2, independents 2, and D4D 1.

Ms Vincent has made Australian parliamentary history by being the youngest elected Upper House MP in Australia’s histolry, the youngest female ever elected to an Australian parliament, and the first person who uses a wheelchair to be elected in the SA Parliament.

“South Australians have shouted their intentions loud and clear,” she said after the count.

“People with disabilities and those who love them will no longer be silenced. I will be a voice for those without a voice.”

Parliament House will now have a scramble to make the Chamber accessible – they’ve never bothered before.

* I strongly suspect she’s not the first disabled politician. Perhaps the first where anyone else has noticed.

The Importance of Being Bellatrix Lestrange

Bellatrix Lestrange, as portrayed by Helena Bonham Carter, a pale woman with a mop of dark, thick curly hair lightly tinged with strands of grey, smirking devilishly in a black dress with white embroidery, pointing her wand at her own face.It is odd the way that The Guy and I have these conversations…or maybe it is a sign that we watch our Harry Potter movies too much, but one night while viewing HPatHBP for appoximately the nonillionth time I turned to him during the Unbreakable Vow scene at Spinner’s End, and began the following thought train (all quotes should be presumed to be “air quotes”):

Me: You know, all of Snape and Dumbledore’s plans would have been shot if anyone at all would have listened to Bellatrix.

The Guy: No kidding! She never trusted Snape. Look at how she taunts him!

Me: It’s because everyone dismisses her as just being “insane”, you know.

The Guy: Because she was in Azkaban, you know, and it has “driven her mad”, so she obviously doesn’t know what she is talking about.

Me: Obviously.

See, I am not in anyway advocating for Team Voldemort or something. There is a great discussion on racism that can be had about the antics of the Death Eaters (and the dynamics of having that point made from a primarily White PoV) in another post, but more interestingly to me right now in this particular post is that Bellatrix was completely right in her mistrust of Severus Snape and his position beside Lord Voldemort. Her feelings go much deeper than mere jealousy (but why shouldn’t she be jealous, since she alone stood proudly, unafraid of the consequences of supporting Voldemort when others did not?) to a practical mistrust of someone who seemed to benefit all to much from a convenient and literal get out of jail free card.

We know that Bellatrix was described as having a personality that bordered on displaying psychopathic tendencies* (from a lay perspective), in that she showed little to no conscience. We know that her cold and callousness was often played up if for no other reason than to reinforce that Bellatrix was someone who was a little unbalanced. Her pride in being a “pure blood” was over the top to a “normal” person, and we are to presume that no rational person would behave the way that she would. So, no rational person would honestly believe that anyone would dare betray the Dark Lord. She goads people with baby talk and laughs at inappropriate times which all adds to the image of the mentally unstable woman who just can’t be taken seriously, but is tolerated for whatever reasons (in Bellatrix’ case, it is more than likely her undeniable talent and power. Even Death Eaters can’t look that gift horse in the mouth, mental illness or no!).

I am not a doctor, nor anyone qualified to make medical opinions about the fictional personality of Bellatrix Lestrange, but I do know that often in real life people who have mental illness, to any degree, are in fact taken less seriously than those who do not. They are dismissed in everyday goings on, dismissed when it comes to their own medical care, told they shouldn’t have children, told they are not suitable parents if they do already, and when they leave the room you had best believe that people snicker that “poor crazy Bellatrix is raving again”… The importance of Bellatrix Lestrange is that she represents real people…real women who exist — whether intentional on the part of J.K. Rowling or no — who have valid concerns in the world, and who can not get their voices heard because their mental illness (or any disability) creates a barrier between what they say and what others are willing to hear.

So J.K. was free to write this character, whose madness and temper were often mirrored in her own cousin, Sirius Black (interesting, no?), who could go on and on at will about Severus and how he was not to be trusted, how he was really going to betray the Dark Lord. Severus was able to rest easy through her rantings, knowing full well that no one was going to believe her, that his triple agent status was going to remain unscathed, because, after all, who would ever believe a crazy person, right? Voldemort might have been better served had someone actually listened to her.

But no one did.

Interesting, that.

I mean, I guess it is a good thing, both for Harry himself, and for the sales of books five through seven or so and the corresponding movies, since the story might have stopped cold had any of that happened. Something to consider, I suppose.

Oh, how I do love discussing Harry Potter.

*These descriptions I take mostly from the Harry Potter wiki.

Photo: The Harry Potter wiki

Cross Posted at random babble…

Recommended Reading for April 7, 2010

A red, white and black butterfly is standing on the very edge of a curly bench arm.  Arm-crutches are looped around the bench.

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.

Anger as a Constructive Force

Note: This is kind of an old post, but I think it’s still useful.

I’m sure that many of you have heard variations on the following:

“You’re just too angry. Your anger alienates people/potential allies and might make them afraid to associate with you! They won’t want to be on your side because of your anger.”

This statement, or a variation thereof, is often wielded at feminists, people of color (particularly women of color), radical progressives, non-mainstream members of the LGBTIQA community, disabled and chronically ill folks, atheists, fat acceptance activists, and others in order to get them to capitulate to some weird, unseen social standard that requires that they not offend anyone even as they fight to be heard and taken seriously, as well as for social and political justice.

There is a difference between being angry for its own sake, and turning one’s anger into action. For whatever reason, mainstream Western culture has decided that people who have historically been put down, devalued and mistreated by those in the majority should fight for their rights, but they should “be nice” while they do so. The messages that historically devalued groups have to get across, even if said messages are quite radical, should apparently be palatable even to the people who have the most social currency in mainstream society. What’s radical about that?

Anger makes people fundamentally uncomfortable, and I think that this discomfort often discourages constructive work. When those who need to express their anger, somehow, are not allowed to do so, the anger can become toxic. Instead of a catalyst for change, it becomes a symptom of a missed opportunity.

My own anger is something that I’ve just begun to embrace after years of stuffing it down and having it reappear at other times, often to my own detriment. Certainly, I may be too angry. I may indeed alienate people with some of my words. However, do I really want those who cannot “handle” what I have to say as allies, if I have to add, for example, rainbows and unicorns and puppies to my outlook on the world in order to make my outlook more palatable? No.

Anger, if used in a constructive manner, can be a great creative force. Most of the cartoons that I draw and have drawn start or started as brief doodles about things that make me or have made me angry. When I can create something that has been inspired by my own strong feelings, I feel much better and more able to cope with things such as my illness, and the physical pain and fatigue that come with it. When I take the opposite tack–that is, when I hold my anger in and don’t do anything with it–I feel worse.

[Originally posted at HAM.BLOG on August 7, 2008.]

Dear Carolyn Hax: Thank You

I was so pleased when s.e. brought Carolyn Hax’s advice to a grandparent of an autistic girl to my attention.

Here’s a clip of the letter Carolyn is responding to:

The mother of my grandgirls is making life a problem. The middle girl is extremely autistic and has not been taught the social rules we all need. That means it is extremely hard to take her anywhere. She is manageable in the car, taken out to a fast food restaurant and back home. But she is not social enough to take to a store or overnight. The parents think we should be able to take her overnight and anywhere we take the other girls.

As I mentioned in yesterday’s post about Appearing Normal, children are not unaware of these sorts of situations, and they do have long-term consequences. Carolyn doesn’t pull any punches:

If it already hasn’t screamed its way off the page, here’s where I’m going with these questions: There are ways you can show an interest in including Jane, and if you haven’t tried them, then you’re the one who is making life a problem. You can ask your daughter to teach you her strategies for bringing Jane on successful outings, or, if you’ve learned those already, then you can admit that Jane overwhelms you and ask for outing ideas that are a notch above McDonald’s that can build your confidence with her. Then you can take Jane with you, one-on-one, for as many of these outings as you take the other girls.

Basically: Stop treating your grandchild like a problem to be solved. The problem here is not “Jane”.

In my experience, situations like this one are pretty common, and not just in family members. It’s easier to just… not invite or plan for the wheelchair-user than it is to be limited to the small number of places they can go. It’s easier not to include things that can be helpful to people who are disabled than it is to contact people with disabilities and find out what their needs are.

I’m really glad to read Carolyn Hax calling that shit out for what it is.

I really recommend reading the whole thing.

Recommended Reading for April 6, 2010

Assistive tech keyboards - three of them, all with large print and brightly contrasted colours

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.

Post-Secondary Students, I am looking for your stories

Are you, or have you been, a post-secondary student with a disability? What have been your experiences with navigating your institution as a disabled student? Is/was there a Student Accessibility Services office, and how effective were they in assisting you?

If you are willing to talk about what happened – good or bad – please email me. anna @ disabledfeminists.com

Jenny McCarthy & Autism Part 2: Let’s All Be Normal (Acting)

When I wrote about Jenny McCarthy last week, I focused primarily on how her “cure” efforts affect parents. Today, I want to write about how “cure” efforts affect children with disabilities.

I feel pretty safe in saying that most people who are born with disabilities, or develop a disability very early in life, have experienced the Pressure To Appear Normal. The ones I have talked to have told me that the greatest amount of pressure to Appear Normal has come, either directly or indirectly, from their parents.

In my case, I remember being yelled at by my father after my parents, unaware of how unwell I was, and still am, read the diary I was required to keep at school. Finding out how unhappy I was that way made my mother cry. After that, I only wrote fictional stories in my required-diary at school. I didn’t want to upset my parents by being “sad”. [My parents may have a different understanding of this event. I’ve never talked to them about it. I also haven’t talked to them about my repeated hospitalizations.]

It took me a long time to convince Don that it was okay to talk about being in pain and how he felt about everything. Like me, his previous attempts to talk about his disability led to his mother being upset. His attempts to appear normal means he went over a decade needing far more assistance than he was getting. He felt like a failure for getting a cane, because everyone would “know” he was disabled. Getting the cane, and now his wheelchair, has led to a drastic improvement to his quality of life – and it didn’t happen until he was in his late 20s.

If you read many of the Very Special Lessons-type news media stories about disability, they will often include a paragraph about how the person with a disability’s parents had at some point pushed for them to be in a “regular” school until, giving up, they finally admitted their child needed more help than they were able to get there. It’s often presented as a sadness, that this child couldn’t “overcome”.

From Deaf children being denied Sign Language until their late teens to grandparents refusing to be seen in public with their autistic grandchildren until they can learn to behave, there is are a lot of messages disabled children receive from their families: Be Normal. Look Normal. Don’t upset us by not being Normal.

I hope my last post made it clear that I’m very sympathetic to the situation parents find themselves in. There are simply not enough resources available to help families. There is constant pressure on parents to explain how they “made” their kids disabled, and what they’re doing to “fix it”. I don’t just think that pressure is there. I know it. I know for certain that Don’s mother still feels guilty for “making” Don disabled.

But children are very aware of the pressure to be normal. And when people like Jenny McCarthy and her ilk push “cures” for disability out there, not only are parents asked why they aren’t administering these cures, children are, either directly or indirectly, asked why they aren’t cured, too.

“Why are you still disabled when your disability is curable?”

“What are you doing to make yourself better?”

Try harder. Do more. It will make everyone else feel more comfortable.