Peanut Gallery
Okay, now I have to say, you're fucking substantial. Mental note: come here often to read and to learn.
I try to be but it gets hard. This self-imposed theme is harder bc I am only allowing myself to keep to it and not post anything on the side.
Keep in mind these are papers I've already written, just wanted to share because they fit in perfectly with my own Disability Awareness Week.
And please, pass me on to others so they can learn, too!
I have to say...
This is obviously a very thoughtful attempt to write about women and disability, and I don't want to undercut it...I'll just admit I have mixed feelings about someone able explaining my tribe's position...and I've always had that odd discomfort since one of my best friends is an able bodied academic who spends much academic time on disability studies.
I don't discourage you. Keep it up. My discomfort shouldn't preclude geniune inquiry by anyone who is truly trying to "get it."
Thank you for commenting imfunnytoo.
I don't want my writing or attention to Disability Awareness to any way trump the personal experiences you have had. Honestly, I don't blame you for feeling uncomfortable about my writings because how the hell do I know what you're life is truly like?
The purpose of my research and various papers has been merely to counter balance the lack of a real feminist disability conversation going on in the various classes I took. I have been greatful for this experience and wouldn't trade it for anything.
When I wrote this paper (the one this comments section is linked to), I purposely sought out resources that came from real-life experiences. It was also the very first in-depth research paper I had ever written and, when going back over the paper in order to post it, I changed a lot of things. (I have no idea how I got a B on the original, lemme tell you.) Since then, I have come across much more information and expanded my own personal library tremendously.
What told me the paper was necessary, was when I told my teacher in class the subject (Women with Physical Disabilities and their Sexuality), she asked if I was going to write a paper about penile injections and various ways a man could have sex though he had a disability. I remember sighing, then replied with, "No, sexuality is not sex and I'm focusing on women only because they are the most marginalized," or something to that effect - it was almost 4 years ago.
I had several people in my office read the paper and criticize the hell out of it. Three of the women have children with disabilities (1 spina bifida, 1 Downs Syndrome, 1 Austim).
I felt uncomfortable writing it but felt that it also needed to be done, badly. In workshop, my classmates had no idea what to say because that was their first time reading anything that had to do with "handicapped people".
To me, writing these papers and doing the research has been helpful, so that my mind stays open forever instead of going back into its comfortable hole, if you know what I mean. I actually had a lot of fun researching for my Feminist Disability Theory presentation and again, found more great resources and writers, including Lesbians on Disability, edited by Victoria Brownworth. It has been invaluable, seriously.
Having said that, I'm not going to stop, and I won't be totally gung-ho either. I've learned when to speak and when the shutup for the most part. (Like when this kid in the grocery store called an older gentleman retarded for forgetting his cans of soda and then getting perturbed bc I told him that wasn't nice and he shouldn't talk like that, espcially when on the clock and representing the store of which he was an employee.)
Yup. All of that makes good sense. 
I'm curious Did the participants in the class 4 years ago hear the paper and give feedback, or was it simply turned in to the prof???
My workshop got to read 2 drafts of my paper and that consisted of about 10 people. They could give feedback if they wanted, but no one gave much back to me. I was also 27 (I think) while most of them were 18 and had just graduated from high school.
My teacher gave me feedback, but was mostly hesitant also. The people I work for tore it up! The director of my program even wondered why I kept saying 'she' only and didn't inclue the 'he's'. I think he forgot what the title was and quite possibly wanted to know how come no men were included, 'cause you know we can't leave them out of anything heaven forbid.
"As an example, somehow Virginia Governor John Warner ..."
Mark Warner
Wow and I should have known better. Thanks for getting me straightened out David!
I, too, have an "invisible disability." I will never forget when my boyfriend cried, "I wanna have 'normal' sex again!" Then he dumped me.
I have severe curvature to my back. People think I'm walking around with my ass sticking out. I try not to get mad, but........
My friend's husband couldn't take all the hospital visits, doctor's appts and such anymore so he asked for a divorce somewhere around their 6th or 7th year anniversary. He's one of those assholes though that come off as smooth, charming and caring until he lands you. Then he just doesn't give a shit.
Wow, thanks for this. With two "invisible" disabilities, I can totally relate to these stories. Thanks especially to including a reference to Crohn's Disease and treating it like any other disability!
Thank you from the bottom of my heart for this article. You raise points which many people will never have considered. Like the person above, I particularly want to thank you for including Crohn's Disease (someone linked to your article at http://curecrohns.livejournal.com ). So often the debilitating effects of the condition are not appreciated fully, even by those whose professions bring them into contact with sufferers. I have Crohn's and suspect from my own experience that it is widely misunderstood in relation to sexual health issues.
As an example, my GP/family doctor told me I could safely have contraceptive injections. Apparantly she only checked for drug interactions, but had she investigated more thoroughly, she would have known that Crohn's poses an increased risk of blood clots. I only found this out because I had the sense to run it by the specialist first, and he told me I must not have the drug.
And there are so many areas which nobody ever tells you are going to be an issue when it comes to sex - you have to find out for yourself. It's true that professionals are strapped for cash and time to spend with patients, but I can count on one finger the number of times anybody's ever spoken to me about the issue of altered body image (the nature of the condition itself, my scars and my feeding tube have had an effect). I found out from my wonderful boyfriend that I could be loved and desired, but I worry that some people will always be afraid about sex because nobody ever realises they might need help.
Anyway, I hope this comment isn't too much, but I really felt led to reply to such an important article.
Thanks again ~ Ang.
This is really great work, nut! At first I kinda had the same reaction as imfunnytoo (being a crip dyke myself). But -- warning, highly un-PC opinion ahead -- I believe that no minority group really begins to gain traction until members of the normative group take up the fight. Furthermore, nut, your point regarding the utter dearth of research and education (especially in the medical fields) is well taken, and as far as I'm concerned, good research is good research, period.
I've been extraordinarily lucky in finding great doctors -- I try to find really young D.O.'s, and my experiences have been great (my gyno gave me the whole "lesbian safer sex" talk the first time I saw her, with no regard to my disability at all -- I almost cried it was so cool). On the other friend, I have a dear friend who, a few years ago when she was in her early 20's, sensed something wrong with her reproductive system. She had not, up to that point, seen a gyno, so she had to find one. Six months and literally tens of doctors later (doctors who, because of her unique physical situation, refused to do the full workup she needed), she finally found a good doctor who believed her when she said she was in excruciating pain, evaluated her fully, and wound up having to do a partial hysterectomy because cysts had literally taken over that part of her body.
It is precisely for reasons like that that I honestly don't care who's doing the educating (given it's accurate information). There is no reason, whatsoever, that any woman with a disability should ever suffer (or die) from fully preventable conditions because her doctors refuse to see her as a total woman.
Brava, nut, brava!
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