I forgot to include in my response to “Mildred” that I also consulted with a cardiologist, at least two gynecologists and a dermatologist.
But who’s counting?
And, what do they know, anyway?
My response to “Mildred”
To read “Mildred’s” posts:
https://inbedwithfridakahlo.wordpress.com/2006/08/27/ableism-in-the-human-rights-movement-part-v/ the end of this exchange,
——– Original Message ——–_Subject: Re: [Fwd: [utla-hrc-discussion] the retreat]_Date: Mon, 14 Aug 2006 01:15:15 -0700_From: Emma Rosenthal <firstname.lastname@example.org>
Your response here is so incredibly hurtful and disappointing. If I understand correctly, what you are saying is that “Clarence’s” behavior, resentment and marginalization of me was not isolated, but part of an ongoing, collective reaction to the ways I have attempted to explain my limitations, ask for help and participate in the Committee. I think it is interesting that more than a few members of this Committee, including “Clarence”, state that the fact that they don’t believe that I am disabled makes it understandable and acceptable that I have been ridiculed and ostracized, apparently, not only overtly by “Clarence”, but for some time now, as you document when you refer to how various “members (of the Committee) have reacted to Emma.” Any “reaction” to a request for disability accommodation that is marginalizing, hostile, punitive or demeaning creates hostile working conditions.
That you offer the assertion that my “active and vibrant (participation) in the Committee” should invalidate my request that such action and vibrancy be supported and empowered, is astounding. Are disabled people supposed to be inactive and listless in order to be believed, before receiving and meriting support ? I never asked for sympathy. This is the ableist response to disability. What individual members think of me is of no consequence. But when those feelings are fueled by prejudices and are the basis for how I have been treated, this is discrimination. I asked for accommodation. And usually also received accommodation from many members of the Committee. Apparently this has offended some members of the group who, were simultaneously “reacting to Emma.”
No disabled person should ever, except in specifically ascribed and confidential protocols, have to be at all open about their condition. One’s health is a very private and intimate matter that should only be shared in situations that are safe and supportive. Nonetheless, having embraced the Act Up slogan of “silence = death” and Audre Lorde’s admonition; “My silence didn’t protect me, your silence won’t protect you,” I have decided to live my life very publicly. As a writer and an artist I believe that it is a gift that I have that I can use in service of greater social transformation to bring illumination to the humiliation and abuse I endure on a daily basis. You state that I should have presented my condition “matter of fact” (the patriarchal preference to the rational over the emotional and experiential aside!) To that I offer the following: I have made two posts directly to this list, explaining my disability. They can be found on the list archive and I will forward them and repost them to the list. At the foot of every email I send, is a link to my blog: ” in bed with frida kahlo” which documents the daily struggles, victories, symptoms and indignities of life with a disability. Which any of you could, and many of the Committee members have visited.
At one point Andy suggested I use the word ignorance instead of bigotry, in responding to “W’s” email. But ignorance can be rectified through open and sincere dialogue. I didn’t change the wording because I feel the actions of those “reacting to Emma,” reflect prejudice and bigotry. That the people who were unclear about my condition, and questioned my need for support, knowing about these “reactions to Emma,” either participated in them or remained silent in the face of their perpetuation, instead, could have approach the issue with an open mind and an open heart. They could have asked questions, requested clarifications, admitted frustration and ignorance. For while the justification for these “reactions to Emma” are this lack of belief, did those harboring and acting on these resentments ever entertain the possibility that I might really be severely disabled, despite my determination and tenacity to be “active and vibrant?” Did they ever worry, when they “reacted to Emma” that if they were they wrong, their behavior was cruel and oppressive?
Not that it is anyone’s business!!!!! But lest there be any doubt! In the spirit of “matter of fact” information, and for the record: I have consulted with two neurologists, several general practitioners, a psychiatrist, a nutritionist (MD) a rheumatologist, an ENT specialist, therapists, two acupuncturists, a chiropractor, a dentist and several massage therapists in attempting to heal and in continuing to manage this condition. I have qualified for STRS disability retirement, handicapped license plates and Access paratransit. There are strict criteria for approval for these programs, often involving difficult, time consuming and humiliating processes. Blue Cross and UBH (and MHN before it) have all reviewed my medical records and have accepted my medical claims. Also, as with all “isms,” it isn’t my job to educate those who don’t understand. I am not responsible for their bigotry. They are, if this is merely ignorance, responsible for their own self-education. The names of my conditions are fibromyalgia and chronic fatigue syndrome. One of the symptoms is irritable bowel syndrome. I trust you don’t require the details? If you or others really only need more information, google away!!!!!
You admonish me to be more self-reflective. While I believe in personal growth, I am not going to do therapy here. It would be an inappropriate use of Committee resources and time, and would open me up to greater abuse. I assure you that I am in the process of learning how to address the daily indignities and humiliation my condition invites, with grace and dignity. Usually I can do this. Other times I simply cannot. Remember. I made it up the hill and prepared to sit in the heat without any complaint. I listened to several of “Clarence’s” admonitions insults and denials, (what others call “jokes.”) left the room twice and asked for support while he continued to deny my request, and ridiculed it, while everyone else sat shocked or amused.
It is amazing how far we have strayed from simple feminist wisdom and solidarity, even forgetting the admonition that the personal is political. Only those with privilege can afford not to draw political conclusions from their daily objective conditions. Too often those of privilege address issues of global oppression for the purpose of accommodating their guilt. This becomes apparent when their own privilege is on the line and they insist in determining the range of discussion and the legitimacy of the agenda of those more marginalized. Personally, my contradictions with capitalism, hegemony and patriarchy are no longer merely theoretical.