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
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.
I first learned about panic attacks as a disability in the Mercedes Lackey novel Children of the Night. The main character, Diana Tregarde, has crippling panic attacks in the aftermath of a major attack on her. The panic attacks are so bad that she feels she is reliving the moment, and even blacks out from panic. They come on her without warning, when anyone says something that brings the night of her attack to mind.
Over the course of one (exhausting) evening, her vampire lover teaches her to turn the energy generated by these panic attacks into a magical shield of light that affects vampires and protects her. This shield, of course, helps save the day.
And, of course everyone “knows” that blind people develop extra-sensory hearing abilities to “compensate” for their blindness. I remember an episode of M*A*S*H* – a US show set during the Korean war, a dramedy that focuses on the doctors in a medical unit stationed there – in which Dr Hawkeye Pierce is temporarily blinded, and within a few days is able to hear the choppers bringing in the wounded before anyone else. Because that’s just how it works, right? (He also manages to smell a problem his fellow doctor is having in the OR – a perforated bowel. It’s realistic, I think, that someone of Hawkeye’s experience would be able to do that, but it’s strongly implied his temporary blindness is what enabled him to do so.)
It’s even better in “Blind Date”, an episode of Angel where the “vampire with a soul” has to battle a blind assassin. She, of course, is acquitted of her crimes because no one believes a blind woman can commit crimes. But within the episode she can “see outside the normal range of human sight”, and apparently can hear people’s heartbeats.
Of course she can.
The number of times I see a person with a disability in pop culture with some form of super-power versus the number of times I’ve seen someone with a disability portrayed somewhat realistically is… Well, there isn’t really a lot of the latter, and there sure is a lot of the former. There are so many of the former that TV Tropes has a page, with many sub-pages, for Disability Superpower. [See Also: TV Tropes on Inspirationally Disadvantaged]
Depending on the day of the week, I see these stories in one of three ways: Either the creator is thinking “I really want to include disability in my storyline, but I don’t think disabled people are interesting on their own. I better come up with something to make them more interesting to the storyline.” Or “You know what’s Special? Disability! Let’s do a disability special, and make that person have special powers!”.
(The third way is “Damn it, I’m irritated as all get out. Why am I even watching this?” Which is why I’ve never seen past the the radar-rain scene in Daredevil.)
I get frustrated with these stories not because there’s something deeply wrong with Disability Superpowers, but because there’s very little to counter-balance them in pop culture. It feels like, outside of the news (where people with disabilities are either tragedies or Very Special Lessons), television, books, and movies go for Super Powered, Special Lessons, or Not At All.
This is why we keep talking about it.
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.
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.