Category Archives: Education
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.
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
Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).
You’re intelligent, personable, and get good grades. It might look like higher education is a given.
But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.
Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.
I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.
Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.
Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.
Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.
The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.
She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.
I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects, he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.
As I thought I would, I struggled with my schedule. Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.
But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.
I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.
It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.
This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.
I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.
Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.
The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.
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?
Anna linked to the Australian Broadcasting Corporation’s coverage of this story earlier in the week, now here is Cara’s analysis at The Curvature: Australian Women Report Sexual Abuse in Victoria Psychiatric Wards:
Everyone deserves safety, no matter what their mental health or disability status. But there is an extra responsibility to keep safe those who have been placed in restrictive and vulnerable environments.
stuff to say in class by Amanda Forest Vivian at I’M SOMEWHERE ELSE:
I mean, to me this is common sense and people should already be questioning “non-disabled people>>>>everyone else forever,” but if we really need a study to show that forced normalization in every area of life is really NOT SMART, studying women would be an easy way to do it.
Sorry I’m so inconvenient by Kali at Brilliant Mind Broken Body:
I hate things like this, where it feels like I’m treated as an inconvenience. It’s not like I get some kind of power trip asking for accomodations. I don’t push people around because it’s fun. When I ask for something, it’s because I NEED it, and my health, safety, and ability to continue going to school are jeopardized.
Look, I’m sorry I’m so inconvenient. But if you had to deal with the sheer number of inconveniences I deal with every day because of my disabilities, you’d realize that I’m really asking for very little.
From the U.S. Equal Employment Opportunity Commission, American Apparel Sued by EEOC for Disability Discrimination:
American Apparel, Inc., a clothing manufacturer which operates what it says is the largest garment factory in the nation, violated federal law when it terminated a disabled garment worker while he was on medical leave for cancer treatment, the U.S. Equal Employment Opportunity Commission (EEOC) charged in a lawsuit filed last week.
At the New Zealand Herald: Call to rescue IHC providers rejected:
Health Minister Tony Ryall has ruled out a Government bailout of disability services facing hundreds of millions of dollars debt for backpay arising from an Employment Court ruling.
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As I mentioned recently, I’ve just gone back to school. I was enrolling for classes over the summer and kept coming back to a course called “Mental Health Policy.” Here’s the description: ‘Examination of evolution of social policy and services for mentally ill, with emphasis on political, economic, ideological, and sociological factors that affect views of mentally ill and services they are provided.’
Sounds right up my alley, right? Half of me really wanted to take it, but the other half of me wants to stay as far away as possible. Because I don’t want to hear people talk about people with mental illness like they’re a separate species, like there’s none of them in the room. I don’t want to hear people advocating for involuntary commitment. I don’t want to listen to people talk about how hard it was on them to have a relationship with a person with a mental illness. I absolutely do not want to hear the terms “those people” or “crazies” or “lunatics.” I just don’t.
I know that in theory, the professor is supposed to take care of those kinds of things. But the more time I spend on disability issues, the more thinking and reading and discussing I do, I find myself moving more and more to the radical end of the spectrum. Reconsidering and rejecting a lot of the “for their own good” policies I’d been okay with in the past. Thinking more and more about the social model of disability and becoming more insistent on demanding movement and changes and sacrifices from TABs instead of being willing to sacrifice and go without.
And I don’t have any faith that the professor would agree with me about all of that. There’s a difference between demanding baseline sensitivity to disability issues – using people first language, recognizing and respecting autonomy, including the viewpoints and rights of PWDs in discussions – and expecting the professor to be as or more radical than me on every potential issue. The first is reasonable (or should be), the second is not. (Unless maybe I was enrolled at Radical Disability Studies University.) But I knew that if the professor didn’t live up to that unreasonably high standard, I would feel irritated in every single class meeting. I would think about how radical or confrontational to be in my papers, my exams, my class discussion.
And then there would be the big question: do I disclose my disability status, or not? Do I talk about mental health policy without being explicit that I’m in the group of people who would be affected, or do I trust these strangers with extremely personal information about myself? Which of those could I live with? Which would make me the least uncomfortable?
So I’m passing up this learning opportunity – and potential teaching opportunity, as I’d imagine I’d run into some “teachable moments” at some point during the class. Because I just don’t want to deal with it. I just don’t have the energy.
And that, frankly, is a real shame. I’d love to do the reading and have the discussions and engage in the thinking that comes with the class. And I’m sure I have some opinions and experiences that would enrich the discussion and benefit other people in the class. But it’s just not worth it for me.
Transcribe Your Classes!
Please note that spots are filling up quickly for the Liberated Learning Youth Initiative starting this fall. The Youth Initiative provides students with disabilities access to a new Speech Recognition transcription system. During the project, students will be given special user accounts where they will be able to upload recorded lectures and receive speech recognition generated, multimedia transcripts.
Brief application forms are posted at Transcribe Your Class.
We encourage you to review the participation criteria on the website, share this message, and apply to participate. For further information, please contact:
Keith Bain, Project Director, Liberated Learning, Saint Mary’s University
Janice Stevens, Project Coordinator, Liberated Learning, Saint Mary’s University