Monthly Archives: November 2010
Last night, for the first time in ages, I got a full night’s sleep! This hasn’t happened in months, so I am very pleased! This is just a little spark of joy for me: it’s hardly a pattern yet, and I’ve only been managing to sleep sensible hours a very little bit of late. And I still haven’t felt properly rested in years and years. But it’s something.
It’s a really simple thing, sleep, something really pleasurable. Sinking into warmth and stillness and dreams. It’s something I find terribly difficult, and I feel disappointed every day when I wake up to an instant headache and drowsiness and feeling like I haven’t slept at all. It’s a real struggle to get through a day feeling like that.
And while I still feel like I haven’t slept in a week, this is progress. I may not remember the last time I actually felt rested, really ready to tackle a day, but last night has buoyed my heart up so much. Baby steps.
How do you relate to your own sleeping patterns?
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
I often find myself wondering when, exactly, everything started. Have I always been dealing with mental illness? Have I always been, to greater or lesser degrees, disabled? At times the wondering borders on obsession, the inability of my anxious mind to let things go making me turn the thought over and over in my mind. Maybe part of me thinks that if I knew when it started, if I could find some moment and say, “This is when it began,” then maybe I could master it. I could understand it, I could control it, I could fix it. Ridiculous, obviously, but a lot what goes on in my head has fairly little to do with logic.
Shoshie at Catalytic Reactions: Afraid to Fly (trigger warning)
I particularly worry about flying the day before Thanksgiving. The flights are so full, the airlines are looking for any excuse to boot people. And now, there’s the added stress of the body scanners/grope searching. I don’t want to go through the body scanners. I don’t want someone to see my naked body. I’m not ashamed, but I haven’t done anything wrong. They have no right.
The click in my mind that connected that to the undertone of amazement that a person with a disability would adapt and go on with their life. It’s as if there’s a sense of awe that someone would face difficulty or pain without being curled up in a corner, gibbering in fear and how this bestows upon the person a regard as being a role model. Because it is apparently inconceivable to the able-bodied that it is possible to have a life while not being able to move your body the way the Abs do. Inconceivable to the point that there is this weird sense that disability conveys an alienness, an otherworldly not quite personhood.
I’ve been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn’t have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That’s when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn’t go away and slept through my final year too.
Imagine a safe, inexpensive and drug-free way to prevent the long-term brain damage that often follows a stroke. No such treatment exists, but a new study involving rats suggests it might not take much to prime the brain to repair itself in the immediate aftermath of a stroke. For the rats, the simple act of tickling a whisker was enough to allow the animals to regain full cognitive function after a severe stroke — as long as the treatment was given within two hours.
Herself a victim of chronic pain, [author Melanie Thernstrom] brings a personal perspective to the subject and also includes informative vignettes of doctors and patients she encountered at the many pain clinics she visited in her investigations. She shows that medical treatment of pain is suboptimal because most doctors have not yet incorporated recent scientific discoveries into their thinking, discoveries indicating that chronic pain is a disease in its own right, a state of pathological pain sensitivity.
Everybody, I have found my new art crush. Yinka Shonibare, MBE is a British-Nigerian artist with an impressive list of awards, publications, and gallery exhibitions on his resume. And I am all kinds of in love with his work, from his art installations to his gallery pieces. I do love an artist with flexibility who is just as likely to be found on the stage as in a gallery. And I like an artist who forces me to confront things about myself, to boot.
This piece is ‘Leisure Lady (with ocelots)’ and it pretty much sums up everything awesome about his work. For this sculpture series, he explores batik and other traditional textiles in ornate, beautiful gowns (seriously, if he did garment construction, I would totally be ordering from him) with clear Victorian influences. The headlessness of the mannequin provokes all kinds of thoughts in my head about identity; you could also read it as dehumanising, but I think it’s more complicated than that.
‘How to Blow Up Two Heads at Once (ladies).’ It’s disturbing. It’s challenging. It’s beautiful.
This quote about his work sums it up better than I can:
Known for using batik in costumed dioramas that explore race and colonialism, Yinka Shonibare MBE also employs painting, sculpture, photography, and film in work that disrupts and challenges our notions of cultural identity. Taking on the honorific MBE as part of his name in everyday use, Shonibare plays with the ambiguities and contradictions of his attitude toward the Establishment and its legacies of colonialism and class. In multimedia projects that reveal his passion for art history, literature, and philosophy, Shonibare provides a critical tour of Western civilization and its achievements and failures. At the same time, his sensitive use of his own foibles (vanity, for one) and challenges (physical disability) provide an autobiographical perspective through which to navigate the contradictory emotions and paradoxes of his examination of individual and political power. (source)
This weekend, s.e. and abby both read The Summoning, by Kelley Armstrong. Rather than fighting over which one got to review it, they decided to have a chat instead! Here’s the synopsis from the publisher, and be advised that mild spoilers lie beyond!
My name is Chloe Saunders and my life will never be the same again.
All I wanted was to make friends, meet boys, and keep on being ordinary. I don’t even know what that means anymore. It all started on the day that I saw my first ghost—and the ghost saw me.
Now there are ghosts everywhere and they won’t leave me alone. To top it all off, I somehow got myself locked up in Lyle House, a “special home” for troubled teens. Yet the home isn’t what it seems. Don’t tell anyone, but I think there might be more to my housemates than meets the eye. The question is, whose side are they on? It’s up to me to figure out the dangerous secrets behind Lyle House . . . before its skeletons come back to haunt me.
Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.
The first two links sent to me by Sharon Wachsler:
These pages offer you the opportunity to step into the lives of some thirty young adults and children with disabilities. Here you will find poetry, essays, interviews, songs, journal writing, letters, and pictures; each tells a story about something essential — some kernel of meaning — in its young author’s life.
Warning: This next story has some very problematic and all around triggering language, but I, as Sharon did, feel that it has quite a bit to say. Please read with care, and if discussion about how “little old ladies are destroying medical care” is going to hurt you, please do not click through.
The Globe and Mail: Little old ladies are crashing the system
You’d think this problem would be easy to fix. More home care! People have been saying this for 20 years, but it never happens. Dr. Sloan has been involved in the start-up of no fewer than four potential government-funded programs to provide genuinely comprehensive care and support for elderly people at home, and every one has collapsed. Why? He thinks that, at bottom, it’s our individual reluctance to let go of the “prevention and cure” approach to care, even when it’s disastrous.
Over the course of her career, Freeman’s gotten to play guitar with the Barenaked Ladies, dance with Tim McGraw (the only time, she reports, she’s ever forgotten how to sign) and sign obscenities with Rob Zombie. (“He wanted to see what the sign-language lady would do. I’m glad my daughters weren’t there.”)
The best part, though, is watching her audience.
KXAN.com: Disabled vets hit the ice (video with approximate transcript at the link)
The video is of a news segment about military veterans in Austin (I am assuming Texas) who play sled hockey. The video includes footage of people playing sled hockey, ice hockey played on small runner sleighs with two small hockey sticks that are used to propel the player forward and also used for controlling and manipulating the puck.
One player who’s a two-time Paralympian says he searched for a while before he fell in love with the sport.
“I was injured 26 years ago and played around with different sports. Basketball, wheelchair tennis, what have you. Finally I tried sled hockey and it’s the best disabled sport out there,” said one player.
medGadget: Touchscreen Gaming for Cerebral Palsy Rehab
Researchers from the Spaulding Rehabilitation Hospital and the Harvard School of Engineering and Applied Sciences have adapted a Microsoft Surface to help kids with cerebral palsy get some valuable, fun therapy. Some kids with the disease were invited to Children’s Hospital Boston to try out the system.
If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.
Gregory Hlibok, for those who do not know (and there’s no particular reason you should!) is a Deaf attorney who was just appointed to head the disability rights office at the Federal Communications Commission (FCC) in the United States.
This is news for two important reasons.
1. The FCC is responsible for regulating communications in the United States, including addressing issues like providing mandatory subtitling on media, approving designs for accessible telecommunications devices, and other such matters. Having a disability rights office is a good thing, because the FCC’s work directly impacts people with disabilities. Having a disabled person head that office? Even better.
2. This is the first time the head of the FCC’s disability rights office has been a disabled person. The reason they thought it might be a good idea to get a PWD heading the office? Because they are getting ready to start work on developing a framework for enforcing the 21st Century Communications and Video Accessibility Act, and, hey, maybe a disabled person would know a little something something about that kind of thing!
What does the disability rights office do, exactly? Some important stuff:
According to its website, the DRO addresses disability-related telecommunications matters, including telecommunications relay service, access to telecommunications equipment and services by people with disabilities, access to emergency information, and closed captioning. In addition, DRO provides expert advice and assistance on issues relevant to people with disabilities, and initiates rule making for the development of policies to ensure that communications are accessible to this population. (source)
Hlibok is a pretty great candidate for this job, I have to say. He’s not just a Deaf attorney with almost 10 years of experience in the disability rights office; he’s also been an activist for Deaf rights in the United States. In 1988, he acted as a spokesperson for the Deaf President Now movement at Gallaudet.
“Greg will be heading up the Disability Rights Office at a crucial time, as the FCC ramps up to implement the most significant disability law in two decades,” said FCC Chairman Julius Genachowski in a press release. “Greg possesses extensive knowledge in the field of telecommunications access for people with disabilities as well as the leadership qualities necessary to lead the office.” (source)
He sounds like the right person to get the job done. It’s a pity that the FCC apparently didn’t think it was necessary to have a person with disabilities heading the disability rights office until they were faced with a major disability-related law they have to enforce. Yet another reminder that it is generally assumed we don’t need to advocate for ourselves and certainly won’t have anything to add to discussions about our lives.
I wish Mr. Hlibok success in his new job position, and I’m really looking forward to the changes in telecommunications and media communication in the United States that are going to come about as a result of this landmark legislation.
I think we can make this short and sweet, so let’s jump right in, shall we?
Miss Manners fields a Veterans’ Day Special from Every Military Person, Everywhere!
We members of the military would be honored if you could address military funeral etiquette for Veterans Day.
Naturally, I jest, but I do take minor exception to members of a group claiming to speak on behalf of an entire group. So, thank you, letter-writer, or representative group of military doodz.
For those do not know: It is not necessary for you to stand to receive the U.S. flag. We expect that you are in distress with the loss of your family member.
We are saluting our fellow service member for the last time after we give you the flag. We do not expect you to return our salute.
I’ll cut to the quick here. I hate it when military people talk down to civilians as if they can not possibly understand simple things, like funeral service protocol. But, I’ll give the benefit of the doubt here, because even as a veteran myself, sometimes I get a little confused on who expects me to salute when, etc.
Thanks for clearing that point up, if not in a slightly condescending manner.
We may be silent when you thank us. We are being silent as our fellow service member is now forever silent. Do not think we are rude for our silence; it is out of respect to our fellow service member.
We are not at the graveside of a fellow service member for you to thank us. It is a duty to serve this country that we have accepted. Just as your loved one did at sometime during their lifetime.
That’s great. Thank you for trudging yourselves out there. Hope it wasn’t too inconvenient. I happen to know that funeral detail comes with some pretty good perks and recognition along with the hard work. I imagine it is too much for this letter writer to imagine that along with being bereaved, this loved one probably gave quite a bit in service to the country as well. Just because ou didn’t put on a uniform doesn’t mean that sacrifices weren’t made, that life goals and dreams weren’t put on hold, and hours, days, months, or longer weren’t spent waiting for calls that wouldn’t come until that last one finally did. The loved one of a deceased service member deserves a little recognition and respect for the job they did in support of that service member, and most people on a funeral detail know this and can be respectful of this without sending out such a presumptuous letter.
I think that Miss Manners handled it perfectly:
GENTLE READER — Indeed, Miss Manners is grateful to be of help in this small way. She only adds that she is sure that your understanding of the emotional state of the bereaved means that you would not take amiss any such spontaneous, although unnecessary, gestures of gratitude.