Prior to posting the series of emails between myself and “Ethel” and right after Andy posted his account of the events at the retreat, I posted this statement:
(Where names are listed in quotes, they replace the real names of Committee members with fictitious ones. Other minor changes have been made to the original document to assist with contextualization and protect the identity of members whose permission to disclose their identity I did not request.)
——– Original Message ——–_Subject: [utla-hrc-discussion] the rights of the disabled and the events at the retreat_Date: Fri, 11 Aug 2006 20:58:33 -0700_From: Emma Rosenthal <firstname.lastname@example.org>
To the Human Rights Committee:
I am sure that the events at the retreat were distressing for most everyone, and that apparently, even for those who knew everything that was going on, that there remains confusion regarding the significance of events that transpired. Steve has posted an apology to both Andy and myself and Andy has posted his account of events that forced us to leave the retreat before the meeting began. I am grateful to both of these activists for understanding and supporting my work and my rights. I am further honored to have a comrade and partner with the wisdom, kindness and integrity that Andy has. I have, this event aside, which seems to have been the perfect storm, had the honor of serving this committee, which has for the most part been exemplary in accommodating my disability (adding to my shock, the treatment I received at the retreat.)
I was further surprised that no one tried to stop us from leaving and that after the retreat, no one tried to contact either of us. Andy talked to Steve who a few days later, called me. I would have thought that the work that both of us have done for this committee would have elicited a greater response. Since then, I attempted to reach out by email to one member of the Committee who wrote back a rather upside down account of events, essentially blaming and accusing me of being the main cause of the problem. I will be posting that communication in a later email so as not to have to repeat myself too much here, and to further document the lack of clarity on the part of key members of this Committee as to the issue of disability rights as an essential human right. When I do post that communication, I will not be using the person’s name, in order to honor the privacy of what was a personal communication. I will also be posting these communications to my blog, where I document the indignities and difficulties of this disability.
I am aware that my response to what was repeated abuse, humiliation, ridicule and marginalization is what made people most uncomfortable. I want to extend a measured apology, because in apologizing I might imply that there is a correct way to react to abuse and discrimination and I don’t think a Miss Manners response, though expected, should be. While White men are allowed their anger, bravado and transgressions (boys will be boys, he was just joking!), women and other disenfranchised populations are expected to act as social lubricants, tend to their perpetrators, make everyone comfortable, suffer in silence, speak softly. Nonetheless, I do wish my response had been less fearful, desperate and bitter.
Disability carries with it a specific stigma. While White folks will never wake up Black, nor men fear becoming women; everyone, if we live long enough, will become disabled. We are the mirror of your future. And for many, this is very scary. We are bombarded with images of good natured disabled people who rise up against adversity (learn to paint with their toes, ski on one leg) without asking for “special treatment.” Other images are pitiful ones: charity cases, so that the able bodied can feel generous. Or we are the butt of jokes, Hollywood movies replacing circus freak shows. We are warehoused, hidden, separated from you. We are to be exemplary, accommodating, ridiculous or pitiful. And we are supposed to be either good natured or silent. We aren’t supposed to be a mixture of competent and demanding. We are supposed to be grateful and deferential. Our rights to access is seen as a favor bestowed upon us, a source of resentment (Why do THEY get all the good parking spots? They just want special treatment? She isn’t really (that) disabled!) If you convince yourself we are faking it, or that we cause our condition, it makes the denial of your own future all the more easier. If someone as young (I was 35 when I first became this sick,) strong willed and capable as I, can be this impaired, what does that tell you about your own futures?
I had made an incredible effort to attend this retreat. Climbing stairs and being exposed to excessive heat are very difficult for me, as well as for many disabled people. And while I knew we would need to address the issue of venue at some point, I felt that this wasn’t the time. I had planned to keep cool by drinking cold water, wearing a wet scarf, and going into the house if I became too warm or if I needed to rest. Andy drove my car up the steep driveway so that we could park nearer the stairs that lead up to the patio. We damaged part of my bumper in the attempt. (even the car had trouble getting up the driveway!) I needed help getting up to the house. When I asked for ice, “Clarence” repeatedly denied me this small accommodation. Instead, he continually ridiculed and humiliated me. When I went inside the house (as I had done the last two retreats, without incident.) I was told I couldn’t do that either. Finally “Clarence” told me what I could say, as if the word “fuck” was a greater obscenity than the hateful speech and behavior I was reacting to. And the final insult, indignity and humiliation is that I couldn’t leave on my own when I felt that I needed to. I had to ask for help both in getting down the steps and in getting my car out of the driveway. Another Committee member was kind enough to help me down the stairs, but at that point, asking for assistance was one more insult and humiliation to what had been a rather disastrous and devastating series of events. Andy left with me and got my car down the hill.
This is an important case in point that it isn’t enough that people with disabilities be offered help. We must, to the extent possible, have full autonomy and agency. (Certainly a woman’s right to control her own body, extends to the disabled?)
Had this been a private party, none of this would be of any legal or binding consequence, but this was a UTLA Committee event. “Clarence” is a Board of Director, and in that capacity, a spokesperson for the union. He puts the entire organization at risk of liability when, acting in an official capacity, he behaves this way. I wasn’t even asking for full accessibility. I only asked for ice!
This was my first return to a Committee gathering since the conference I was instrumental in producing. To have been treated this way and to have my work so poorly recognized and my autonomy and agency stripped of me by activists who should have a greater understanding of this issue, as well as a better understanding of group process, was devastating. I have been distraught and have had trouble sleeping and concentrating since the retreat. I was completely broken. I considered disappearing further into the isolation this illness imposes on me, not merely because of its own limits, but more because of the limited and bigoted behavior that I have to contend with on a daily basis, in attempting to meet the most banal of needs. I never expected to meet this level of bigotry and humiliation at a Human Rights Committee event. I was determined never to return to this Committee again, to pare back all activism, not only because of “Clarence’s” actions, but the actions of the group both during and after Andy and I left. Andy and Steve have convinced me otherwise.
I hope that we all choose to learn from this experience, and not pretend that it didn’t happen, that we refrain from resorting to platitudes, minimizing the severity or attributing it to personalities. Under both state and federal law, non-profit organizations (including labor unions,) businesses, placed of employment etc. must be handicapped accessible and must provide “reasonable accommodations” to disabled persons. In having the retreat at an inaccessible location, we have been in violation of that law, opening up the union to lawsuits, and who among us would oppose anyone who decided to take such action? It is only just (and legally binding) that all events of this committee and UTLA as well, be held in locations that meet ADA accessibility standards as well as address the particular needs of individual disabled people. I would hope that we would be in the vanguard of advancing these rights beyond current legislation. I plan to exercise and assert my rights and the rights of all disabled people, to the fullest. I deeply hope that we can address these issues as allies and not adversaries.
“Clarence” has since apologized to me and while I have accepted his apology on face value, I have reservations as to its genuineness. Only if this apology is backed up by real amends in behavior in the future and a dedication to the greater issues of accommodation and accessibility, will it prove to have been heartfelt. He must also recognize that working with him will be very difficult for me and that he must honor distance and time if he is sincere in healing the damage he has caused.
Hopefully he will also recognize that had his actions been as pointedly racist or sexist as they were ableist, there are members of this union who would be demanding that he resign from his position on the board.
Furthermore, while “Clarence” advised me that he is invested in having this event at his house in the future, I am equally determined that no event is ever held in a location that is handicapped inaccessible or where basic human rights have been so brazenly disregarded and violated. Even if it were possible to modify his house to be ADA compliant (and it isn’t!) he doesn’t deserve a second chance. We should be at least that committed to assuring that such a series of abuses not occur again. I am willing to assist in finding an alternative, more appropriate, more neutral, less discriminatory venue for the event next year. If none is available, we can always meet at the union hall.
The retreat, though social in atmosphere, sets the tone and the direction of The Committee for the upcoming year. Through the discriminatory actions of our host and the inaccessibility of the venue, I was totally disenfranchised from this process. I am not asking for special treatment. This is not the same as if I simply hadn’t attempted to attend the event. I made every effort to participate but was prevented from doing so. I hope that The Committee won’t mind backtracking a bit to include both Andy’s input as well as mine. I have gone over the minutes of the retreat and will be providing my own feedback as well as adding proposals, specifically as they pertain to projects I have been involved in (the conference) or have proposed focusing on (recruitment.) I trust my input will be more welcome than the unfortunate events at the retreat might indicate and that we can, by focusing on justice and human rights, (not by brushing this under the rug or blaming the victim) become even stronger advocates for human rights.
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