Archive for March, 2008
Relief
Finally, after a week from hell, I am back to blogging. I filed a complaint with the Office of Multicultural Affairs here against the way I’ve been treated by disability services, and they are going to set up some sort of a training, because evidently there have been several complaints from students about the way they’ve been treated by that office. Disability services isn’t even its own department, it’s tied with academic advising. I can’t even begin to address all the problems that are wrong with that. I know I will be gone soon, but I just really hope that things change around here.
An Ashley X Action
The Feminist Response in Disability Activism (FRIDA) has recently put out an action alert for all of you out there in cyberspace to help influence some important policy changes. Ashley X, if you don’t know, is a ten year old girl with cerebral palsy whose parents, with the help of doctors, have decided to mutilate her by surgically removing her breast buds, giving her a hysterectomy, and giving her hormones that will keep her at her current small size. Ashley is a vulnerable member of society, as she is dependent on her parents for most of the tasks in her life. Because of this, Ashley’s parents feel that she would be too much of a burden to them if she were allowed to naturally develop. The procedures that Ashley’s parents wanted for her were illegal for good reason, this law in particular was to protect vulnerable members of society like Ashley. Unfortunately doctors violated the law and went ahead with the procedure. More here.
For more on FRIDA’s efforts or if you’d like to participate in one of their Ashley X actions, please visit them here.
Convention on the Rights of Persons with Disabilities
The Convention on the Rights of Persons with Disabilities is an international treaty that is getting ready to celebrate its one year anniversary on March 30. So far the Convention has had some wonderful success, gaining 125 signatories to the Convention, 71 to the Optional Protocol, 17 ratifications of the Convention, and 11 ratifications on the Optional Protocol. After just a year, that is certainly progress, though there is a long way to go. The United States is not among the countries that have ratified.
This is a really important treaty for people with disabilities. I encourage you to learn more about it; here is the UN page on the Convention.
Ableism from disability services
Dear [My name, which only has four letters, spelled incorrectly]
I am sorry you are still not feeling well. However it is not really appropriate for me to ask for an extension on semester work. We can confirm with instructors that a student has a medical problem and I know [the nurse practitioner] has seen you before break about your fibromyalgia; I did notify your two professors before break about that but your best approach would be to speak with your instructor directly. You can let her know that I am aware of a chronic medical problem that may be affecting your ability to meet your academic obligations but you’ll need a real plan for each of your courses so that you don’t continue to get behind.Sometimes I can be of help in this process by assisting you in mapping out each assignment or test and breaking down a schedule that is reasonable. If you’d like to meet to do this, just let me know.
Best,
Dean *.-
[My name, spelled incorrectly again]
I did email Professor ******* today to confirm that you have a chronic medical problem but I am concerned that you are waiting until the day before the deadline. It is best if you deal directly with your instructors about problem with meeting deadlines because I can’t compel extensions on semester work but I can confirm for them that you are dealing with a chronic condition.Were you able to meet the deadline or get an extension from Professor *******?
Dean *.
I wait until the day before the deadline because I’m not totally defeatist. I think that I can get things done, and then the fatigue hits. I can’t predict that. Disability services obviously does not really understand my disability works, or disability in general. I suppose it is important to note that disability services is staffed by able-bodied folks. Because there’s nothing totally problematic and paternalistic about that. Nice. Thanks for a whole lot of nothing.
On coping
I know it has been awhile since I’ve posted. I took my Spring Break, and it was nice to be within at least a small support system back home. I had blood drawn again at my doctor’s insistence, and they haven’t gotten all the results back, but from what they do know, they want to draw more of my blood because something is up. My little sister evidently has been complaining of pain as well, so that makes all four of the biologically related females in my family who are living with similar mysterious but vague symptoms.
It was nice though to go to a doctor who actually asked me questions about what I was experiencing and gave me the space to talk about it. So often recently, as I’ve heard from others, I’ve experienced this ridiculous paternalism from doctors who think that because I have put myself under their care that they have free reign over my body. They are free to poke my sore spots without asking, because I obviously know nothing about my condition.
I talked to a fellow disabled friend about this, as well as my able-bodied significant other. It’s so important to have a support system, to have people who will listen to you and not judge. Indeed I think it is the only way I have kept my sanity during the continued maltreatment from doctors. I’m tired of being just a number, just a file. I want to be seen as a human being, I want to take part in my care and offer the knowledge I have about MY OWN BODY.
I refuse to go back to that doctor, as I refused to go back to the doctor in Boston that made me parade around the room in my underwear, bending in uncomfortable ways, then made me lie on the examination table while she bent my legs some more and came to the conclusion that if I just took a Tylenol I’d be fine.
I’m just so glad I have the people around me to tell all this to. Maybe one day I’ll have the energy to change it.
