Image: A person in a white shirt spinning cotton candy out of a steel bowl. In the foreground are crafted hearts. From Wikipedia.
Welcome to July’s edition of the Disability Carnival! The theme this month is “evidence”.
Tokah writes about the social mode of disability’s flaws, and communication limitations in "What Is Your Cage Doing To You?":
I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.F S wrote in with a strong description of her post, "Symbols, archetypes and stereotypes: What experts have said about vaginismus":
I am presenting evidence that some so-called experts on women's sexual health problems are sexist jerks who just perpetuate myths and stereotypes about women with vaginismus, to say the least. There is some god awful assumptions out there about women with vaginismus... I take a disability perspective with regards to female sexual dysfunction, instead of an exclusively social construction or exclusively medical approach. I find that the disability model fits my own experiences best, and it's looking like this alternate model is resonating with some women with FSD besides me, too.Spaz Girl sent in a post called “It’s Not That Simple”. The post is an interesting process-oriented exploration of what goes into her experience of driving with cerebral palsy.
But the thing is, if I don't drive, there's a very good chance that I won't be able to go anywhere independently when I'm living on my own... Not to mention with my directional issues, I'd be petrified to be in a big train station by myself (I'm thinking of a few in NYC...). And again, separate issues arise if I bring the scooter - will I be able to get it onto the train? Off the train? Will there be a spot for it on the train? And will my destination be accessible? And paratransit is so ridiculously unreliable that it's barely even an option. So unless I drive, I'm looking at a fairly bleak future limited to the few places I can walk/roll to.In a post titled “Evidence”, Danielle writes about negotiating and providing proof of her son’s evident disability:
Because if he isn’t happy all the time or if he misbehaves, won’t people think he “hasn’t accepted his disability?” That he “hates being different?” Won’t they think he isn’t that inspirational disabled person we all prize so much but instead is a “miserable cripple” who “hasn’t accepted his fate?” Well guess what, a confession—he sometimes has his meltdowns, too. But the meltdowns are not over having to wear braces or walking with crutches. They are about regular kid things like when we make him stop playing video games or when we tell him it’s time to go to bed.Dorian writes about responding to friendly questions with unexpected honesty in “I’m depressed, but otherwise fine.”:
But the whole time, I’m depressed. It doesn’t go away, which is what the people who are puzzled by my response don’t seem to get. I’m depressed. But I can also be fine. Certainly I don’t always pull off that balance, but often enough I do. I have my bad times, where being depressed really is all that’s going on–if asked how I’m doing during one of those times, I’ll most likely say so, too!The 20th anniversary of the Americans with Disabilities Act was this month. Ruth wrote about the importance of accommodations in "An Ordinary Day 20 Years after the passage of ADA"
I know- from experience- that what looks like ordinary isn't. That it's quite extraordinary, not because I have a disability, not because it's extraordinary that I can do what I can, but because of what it has taken to get to having an ordinary day. The message is that many others could do it as well. And will.Haddayr Copley-Woods wrote about the positive impact the ADA has had on her son’s life and what still needs to be accomplished in “A word of thanks for the ADA”
While the impact of the ADA has been profound, there is still a lot to do. Employers are still reluctant to hire disabled people. Studies have found disabled adults are two to three times more likely to live in poverty than adults without disabilities. And we’re still fighting for the Community Choice Act, which would help keep disabled people from being institutionalized.I loved this entry by last month’s carnival host Dave Hingsburger, titled “Down’s Syndrome Off The Clock”. It’s a narrative about overheard conversation between a parent and child, and about the fluidity of disability.
'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.Zuska provides a valuable reminder in “Some Reasons Not To Honk Your Horn At People In Parking Lots”.
She stopped again, 'What?'
'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'
Maybe people are doing stupid things in parking lots for stupid reasons. Or maybe not. Maybe there’s a hidden disability involved. In any case, it’s not clear to me that the honking does anything more than vent the honker’s spleen. I don’t know if that lowers or raises the honker’s blood pressure.At Moving Hands, there is a terrific narrative about when a cochlear implant isn’t necessary:
What am I supposed to say? How am I supposed to explain that sometimes, as nice as the universe of sound is, it can be even better to walk through Manhattan with one less distraction among this sensory bombardment?annaham writes about a surprising experience in which her needs are not questioned in “Why am I surprised by this?”
I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).There’s been a lot of conversation about the autism spectrum and language like “high-functioning”. ballastexistenz wrote on pre-concieved notions in “What I just told someone who didn’t match current autism stereotypes.”
So knowing all that I’m never surprised when people don’t match the conclusions. The conclusions come from generations of faulty observations, faulty logic, and faulty science. And then no matter what the conclusions are, people who match them or who think they match them or can be said to match them by others, suddenly start getting diagnosed more. It’s a disturbingly tangled thing and I wish more people noticed.And Leah Jane wrote about the evolution of her self-identification in “Fully Functioning”
That was what made my brain spiral into regret and horror. I was reinforcing the idea that intelligence equalled a person's worth to the world, that people with autism who could not possibly build rockets or cure HIV were not as valuable as the oft-touted supergeniuses used to justify our existence and given as the reason autism should not be cured.Astrid wrote about the boundaries of acceptable public bearing in “The Limits of Acceptability”
[It] is a norm that, for job interviews, you do not engage in stimming behaviors – or at least not in certain stimming behaviors, since some are acceptable. This norm was created by mostly neurotypical people, and is hence ableist. Some people go so far as to say that stimming at all is wrong, while some people allow it in the privacy of a home.I'll close with one of my most popular posts from the last month, about a very visible portrayal of disability on television: "Ableism, Appropriation, and United States of Tara".
But, after rewatching and researching the show’s origins and authorship in a critical context, I was perturbed to realize that the show’s portrayal of disability was not only sensationalistic, but inherently based on appropriation. In United States of Tara, DID is used as a metaphor, an analogy, a plot point—part of the human experience, yes, but also an opportunity to speculate, crack jokes, and make grand statements about Life (normal life: that is, with able privilege) and Being A Woman (an everyday woman: that is, one who is not crazy).That about wraps it up. Thanks to the folks at Temple University's Disability Studies (particularly Penny Richards) for letting me host this round. The next carnival will be hosted at brilliantmindbrokenbody and the theme is "distance". Thanks for stopping by, folks!