Category Archives: othering
A whole lot of people are celebrating holidays right now, and it seems like the holiday season is a source of stress for many of those people, particularly people with disabilities. Stress about attending family events and dealing with judginess or inaccessible houses. Stress about being required to go to holiday parties for work. Stress about being forced to observe religious traditions you don’t follow in the interests of not causing ‘a scene.’ Stress about hosting events and cooking and making sure everyone’s happy. Stress about buying presents. I see the stress everywhere; everyone I talk to is unhappy, everything in my RSS is exploding with holiday-related stress, and it seems more like the season of misery than cheer for a lot of people.
Maybe that’s not the case for you! Which is awesome. If you love the holidays and look forward to every single aspect and are just bursting with excitement, well, you might not like this next part very much: I don’t celebrate the holidays. I don’t buy presents, I don’t send cards, I don’t put up ornaments, I don’t attend parties, I don’t cook mammoth amounts of food, I don’t travel to be with family. This is in part because I’m not religious; we celebrated Christmas when I was a kid but it was purely secular and as soon as I grew old enough not to resent the fact that everyone around me was getting presents, we stopped. The last holiday event I attended was a Passover Seder a bunch of friends hold every year.
But it’s also because I hate social gatherings, I hate the fraught social minefield of handling cards and presents and things, I can’t deal with large crowds of people and Smells and all of the things that are usually present. So I pretty much check out during the month of December, when the United States is caught in a flurry of Christmas, 100%, all the time. People seem shocked and horrified that I don’t celebrate even a little.
And, you know, a lot of people seem to view me with pity when they find out I don’t have plans for Christmas dinner or what have you. They seem to think that I must be really sad about this, about ‘not having anyone to celebrate with,’ and I’m usually deluged in invites to attend events, which I politely turn down. It was only very recently that I realised very few people are willing to come out and say something I think is pretty important:
It’s okay not to holiday.
If you don’t want to celebrate at all, for whatever reason, that is okay. It’s also perfectly okay to decide that you want to limit what you do during the holidays, again, for whatever reason. Maybe you have limited energy and you want to budget it to do something you care about, like lighting the Yule Log, and you’d like to politely turn down things that will be drains on your energy. Maybe you just plain don’t want to go to the holiday party where everyone will stand around drunk and talk in increasingly loud voices about nothing in particular. Maybe the thought of dealing with family makes your hair change texture and you really just want to spend a few quiet days at home, perhaps alone, maybe with partners or friends. Whatever. It’s okay.
You don’t need my permission for any of those things, of course. But I know that sometimes I find it helpful to be reminded that it is actually okay to take care of myself. I can request or refuse things and not explain them. I can make choices designed to protect myself, whether it’s from really indifferently cooked turkey or from relatives I can’t stand being around. And you can do that too; you don’t owe anyone your time, or your energy, or anything else.
Writing in November, I talked about the pressures many people experience around food and the holidays:
It’s hard, I know. There is no one easy solution; not all of us have the choice to opt out of obligations, not all of us can speak up at the table, not all of us have a choice about where we eat and when and how and what is in front of us. There may only be small, small things you can do to assert your space and your right to exist, and I’m not going to tell you what you should or shouldn’t do. I’m not going to say ‘just don’t go to holiday dinner if you don’t want to’ because I know it’s not that easy, and I know you’re a grownup, and you can make that choice if you want to. But I am here to tell you that I support you in whatever choice you make, in any choice you can make that will increase your happiness levels at a time of year when things are often grim.
You are allowed to do whatever small things you need to do to make the holidays, whether you celebrate or not, easier for you. That might be politely suggesting that you cannot host the family holiday party this year even though you really want to because it eats a lot of energy. It might be offering an alternative to something you cannot or do not want to do; ‘gosh, I would love to attend dinner at your house but I think it will be a little overwhelming, why don’t just you and I go out for lunch the day before to catch up?’ It might be asking your family to please respect the fact that your identity is not up for debate or discussion. Whatever small or large action you decide to take, remember that you, too, are a human being with boundaries and limits and that you deserve to be treated with respect.
Don and I went to see a movie the other night, and gosh, we had fun! I mean, there’s nothing funner than going out for a nice evening with your husband and being confronted straight on with the knowledge that one of the scariest things some people can imagine is being forced to live with someone like you! Yay, fun times for everyone!
The particular film trailer that is paining me this month is for “The Roommate”. At first looks like some sort of “And then they went to university and had awesome adventures” sort of film, right up until that immortal line “She is taking her medications, right?”
There’s a whole genre of these particular films which take an idea that can be pretty scary – moving in with a stranger or virtual stranger – and kick it up a notch. If it’s a comedy, then obviously the problem will be someone who drinks all the milk or borrows all your clothes or is just really annoying, and that particular story will usually be about two white dudes, and in the end the hero will get the girl. When they want to really frighten people with some thriller-version, then it’ll be all about the scary white chick who moves into some other white woman’s life, kills some of her friends, seduces her boyfriend, and tries to steal everything away from her, while some family member eventually reveals that the crazy lady is on medication for some undefined mental health condition.
Gosh, I have no idea why stigma is still attached to mental health conditions!
I really hate that I can’t turn around twice without being reminded that people like me, just by virtue of existing in the world, are scary. There’s always someone reminding me of that, whether it’s a classmate telling me she’ll just say she’s crazy if she kills someone so she can get off without punishment (even though Canada’s jails are full of people with mental health conditions), the near constant repetition of the myth that crazy people are more likely to be violent (even though people with mental health conditions are actually far more likely to be the victims of violent crime rather than the perpetrators), or waiting for the next remake of Single White Female to be put into general release.
I know. They’re just films, and they really are just taking the perfectly normal fear of moving in with someone you don’t know and exaggerating them for effect. But I also know that people are really afraid of those of us with mental health conditions, and that the stigma and myths about mental health conditions can make it really hard for people who are having problems to seek out help. I have also had many discussions with people who have been honest about their mental health conditions to roommates or university officials, and suffered the consequences.
I often see the housing concerns framed as a concern for other students – being around someone with a significant mental illness might traumatize them. And I agree that finding me dead in a bathroom would have traumatized someone. But my self-harm and my mania did not seem to me to be any more potentially traumatizing for other students than my dormmates who would go to the communal bathroom to throw up after every meal, those who were using hard drugs like cocaine, or even those who would binge drink until passing out naked on the stairway, none of whom ever suffered any potential housing consequences. To say nothing of my then-boyfriend, who was then causing me active and ongoing psychological trauma through his emotional abuse and who got to stay in the dorm with all our mutual friends after I was shipped across campus. That I was the only student looked at by the university and potentially subject to penalties – and identified as potentially problematic because I sought lifesaving and appropriate care – speaks volumes about how students with mental disabilities are seen by administrators.
I hate these movies because of the stereotypes they reinforce. I hate that these stereotypes are the main reason I don’t discuss my diagnosis. I hate that I can’t just go to the movies without being reminded that my existence is scary-thriller frightening to enough people to make these movies popular.
Mostly, I’d just like to go see a movie without the reminder. It makes my popcorn taste bad.
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
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Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!
Dear abled people who like to glare at people who use disabled parking spaces,
Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.
However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.
I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.
Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.
Don’t be one of them.
University Kicks Student With Down Syndrome Out Of Classroom; Other Students Protest And Are Ignored
I cannot imagine being told, 3/4s of the way into my first academic term, that my mere presence in the classroom “resulted in a disruption of curriculum delivery and interfered with the teaching and learning environment for the instructor and other students.” Especially with no prior warning, and especially when all 19 of my fellow classmates insisted that this was untrue.
Meet Eliza Schaaf, a 20 year old university student with Down Syndrome. In September she began taking a ceramics class at Souther Oregon University, with the support of her family. She was signed up as a full student, and registered with her university’s disability office. (Part way through the year she was required to be re-registered as auditing rather than a full student.) According to the blog the Schaaf family has set up:
Out of curiosity went to the SOU Disability Resources Office and made appointment to learn what accommodations are available to student with disabilities. None seemed relevant or needed. Did discuss the personal assistant option.
From what I’ve been able to gather from various news reports, Eliza’s mother, Deb Evans, was her personal assistant in the classroom, having signed a contract. This newspaper report at the Mail Tribune points out that the one-size-fits-all model of providing accessibility accommodations didn’t really work in this situation: personal assistants in the classroom were presumed to be for people with physical disabilities, so Deb was limited to setting up Eliza’s workspace for her. In the timeline of events, the Schaff family acknowledges that Deb was asked to not speak to Eliza or the other students during class time, and describes Deb as leaving the room and letting Eliza get any assistance she needed from another student who also signed a personal assistant contract.
Without any warning whatsoever, Eliza received a registered letter from the university informing her:
“At this time, Southern Oregon University does not offer a program specifically designed to provide specialized learning opportunities for students with intellectual disabilities. We have determined that even with the support of the accommodation(s) available at the post-secondary level, you are currently not otherwise qualified to meet the academic standards necessary to participate in this course.”
And, you know, I get that. I think it’s shitty, but I can understand that. Except for one minor problem:
Eliza didn’t develop Down Syndrome spontaneously half-way through October. She had Down Syndrome when the university agreed to accept her as a student, and when the Disability Accommodations Office agreed they really had no assistance they could offer her, and when the university agreed that her mother could be Eliza’s personal assistant, and when they told Deb Evans that she could sit in another room during the class.
Based upon our interactive process and classroom observation, we have conluded that there are no appropriate accommodations that would allow you to engage with the course material at the cognitive level necessary and required of university-level students. Specifically, we have made the following observations during your participation in the course….
Except, according to students actually in the class, no one observed. According to Mollie Mustoe, a student in Eliza’s class and one of the people behind the very vocal outcry about this situation::
She said what bothered her most was that the administration used students in the class as a reason to withdraw Schaaf without consulting those students.
“No one from the administration observed the class, and the administration never had a dialogue with the students about what we felt,” she said.
“She worked almost as independently as me,” Mustoe said. “What she couldn’t do on her own that’s what the personal assistant was for.”
The situation seems to be done and dusted. Despite a petition from all 19 of Eliza’s classmates, the people this decision was allegedly made in support of, despite the Student Senate at Southern Oregon University voting to support Eliza, despite 40 students signing a separate petition in support of Eliza, despite a protest, media attention, and multiple letters from around the world in support of Eliza, the university has decided to reaffirm their decision to force-quit Eliza from the classroom. She won’t even be allowed to come in for the final class. She will be allowed to get a critique from her university professor, though; the person who, it seems, is the one who has made all the complaints about her.
There are more than likely people reading this right now going “But a kid with Down Syndrome doesn’t belong in a university classroom.” Frankly, I’m not going to debate that with you. I’m not on the admissions team of a university. Unless you’re from SOU, you’re also not on the admissions team that has anything to do with the decision to accept Eliza. But Eliza was accepted by the university as a student. Any other student would be allowed to complete the course, even if they were disruptive, even if they were failing, even if they only attended three courses out of 12.
Frankly, this is shitty behaviour, and I am outraged both on behalf of Eliza, who deserved far better treatment than this, and on behalf of the students in her class who were used as an excuse and a shield by the university who then promptly ignored everything the students said in response.
Disability Scoop: University Decision To Withdraw Student With Down Syndrome Sparks Outcry
Mail Tribune: SOU students protest rejection of woman with Down syndrome
The Arc: “I am not a disability”: Eliza’s Story
Mail Tribune: SOU dean reaffirms decision to drop art student with Down syndrome
Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?
Sydney Morning Herald: Why I’m not in the queue for the disabled loo by Liz Ellis.
There was a debate over policy and procedure but ultimately it came down to human conscience, something that I am incredibly appreciative of. But should I really have to rely on human conscience overriding policy and procedure?
The Globe and Mail: The sound (and sight and feel) of music for the deaf by Jill Mahoney.
Frank Russo helps make music for the deaf.
Working with a team of researchers, the Ryerson psychology professor invented a chair that allows deaf people to feel music through vibrations. He also works with both deaf and hearing musicians to compose music that focuses on vibrations and vision rather than sound.
The Los Angeles Times: Mentally ill prisoners get a second chance by Lee Romney.
Mental health courts are operating in 29 California counties, helping offenders and reducing crime in their communities.
As I mentioned a few days ago, I’m writing for the NSW Don’t DIS My ABILITY campaign at present. Here, have some tacky self-promotion!
This will be a bit of a shock if you’re invested in disabled bodies as broken and horrible and unlovable, so brace yourself.
I love mine.
I’ve been thinking about this man ever since, and the way he read me as abled. But mostly I’ve been thinking about assumptions about the kinds of people who do disability advocacy. Namely, there’s a strong perception amongst the abled public that people with disabilities are unable to advocate for ourselves. Supposedly, our abled family and friends do it all for us.
That’s all for this time. Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited.