Monthly Archives: August 2006

Ableism in the Human Rights Community: Part X

“Ethel” response comes through the list while I was responding to “Mildred.” What follows are a series of emails to the HRC list from “Ethel,” “Mildred” and myself.
To remind readers: Right after the retreat “Ethel” and I had an email exchange, off list, which I posted on this blog, (giving her the fictitious name “Ethel.”)

https://inbedwithfridakahlo.wordpress.com/2006/08/25/ableism-in-the-human-rights-committee-part-iii/

I also posted the exchange to the HRC list right after my initial statement to the list. When I posted this exchange to the list, I identified “Ethel” as “W.” Here she refers to “W” in one part of this email, but at another point, quotes “W’s” words as her own. I don’t know if she wanted to keep that exchange anonymous, or was actually outing herself as “W.”__Emma
“Ethel’s” Post to the list:
——– Original Message ——–_Subject: Re: [utla-hrc-discussion] [Fwd: Re: your email]_Date: Mon, 14 Aug 2006 02:00:36 EDT
I feel the need to respond to these email exchanges about what happened. And while exchanges can be helpful, they can also lead to separation. It depends on us.
Also I want to remind us of how difficult it is to have a full picture and good dialogue by email, which is itself flawed. But for those who were not at the event, 20% of communication is by words with 80% being body language and facial expressions. So for those not at the event, while it’s fine for you to express your thoughts from previous meetings), you are missing a large part of what took place by just reading the emails. And it especially does not come off well if you are giving advice, without being there.
There were TWO issues going on. Emma, Andy, and Michael addressed the disability and access issue. I totally agree that in everything we do, we need to look at it with the lenses of inclusion and accessibility for everyone. It is surprising to me that this is not already an established policy. It was how the Third World Coalition of AFSC always operated, which also went the extra of making sure the committee itself was inclusive and diverse.
I do not think anyone would be opposed to this. For those of us who do not have a disability, we need to grow in these issues along with other discriminations._When I said in a previous email that I posted “I don’t know or understand, but feel comfortable with not knowing. I just need to be OPEN”- my point is that we will never know at a heart level what people experience, it’s just not possible. But to me, it’s listening, learning and being open to accepting people’s experience that’s important.
“Mildred” and “w” brought out the second issue. Emma no one disagrees with your right to demand being treated with respect, and you have a right to be angry. No one is disputing you on that.
Bear in mind that is Not the issue, I feel that the issue is that we did not support you and therefore you see us as equally abusive and insensitive to disability needs. Your words to me were “what is even more outrageous is that you sat next to me for most of “Clarence’s” insults that no one supported me or followed me the two times I left the room…”
You had a specific response in mind by “support” and that was to join you in verbal outrage and anger. But remember not everyone took his interaction with you as “, taunting, abusive, humiliating” (as Andy describes). I questioned “Clarence” about his saying “No” to your request for ice and he told me he was joking. It was not funny and looking back, it would have been good for me to tell him that right then. But to use violent and abusive language back at him is not acceptable in the situation for me. And believe me, I can use violent and harsh words (sometimes very inappropriately and I am not proud of it). You can say whatever you want, however you want, but you also don’t have the right to put others down for not joining you in how you took his comments. As you know I did speak with him afterwards about where he was coming from, and how your illness is day to day. But apparently that wasn’t what you were looking for. And I feel that unless a person comes to Your side as you word it, we are being “privileged.”_Lastly, the way we address this can be divisive or positive, which I took “Mildred’s” comment to mean “I don’t feel this event merits all this deep political attention. “It can be a distraction, or we can be more conscious of others, of treating people humanely and being open to different points of view. But let’s not let it polarize us. “Ethel”
And another word from “Mildred: “
——– Original Message ——–_Subject: Re: [utla-hrc-discussion] [Fwd: Re: your email]_Date: Sun, 13 Aug 2006 23:23:53 -0700 (PDT)
<>”Ethel”- I appreciate your last email. I just got through writing a response to Andy’s, but I’m beginning to feel as you expressed.- It is better to talk together face to face.respectfully and treat each other as comrades. No one has a monopoly on suffering or militancy. None of us disagrees with becoming more sensitive and ending of all descrimination, but we have yet to arrive at a process of respect and humanity and not pidgeonhole each other in ways that show we really do not know each other at all.

“Mildred”
__________________________________
<>In responding to “Ethel” (see below) I failed to make two points: 1. that by privilege I of course never meant that people respond by yelling at “Clarence.” In fact in two previous emails to the group I take responsibility for the outburst, apologize and recognize that it was not a healthy response to a very unhealthy and abusive situation. I believe that I did explain, as well in previous emails, that a more appropriate response by the group would have been one of inquiry at first, finding out what I was upset about, an opportunity provided the two times I left the patio. And I would have liked the other members of the Committee to have had the wisdom and courage to stand up to the “host” and support me in my meager request for ice. But first of all, there should be the recognition that no official Committee event should ever have been held in an inaccessible venue, hosted by a someone, who by all admissions has, at the very least, an inappropriate sense of humor.

Privilege in relation to any discriminated group are the rights and assumptions that those of the dominant group take for granted, that are inaccessible, denied to or difficult to achieve by those in the group that is being marginalized.
Emma
——– Original Message ——–_Subject: p.s. Re: [utla-hrc-discussion] [Fwd: Re: your email]_Date: Mon, 14 Aug 2006 01:15:27 -0700_From: Emma Rosenthal
i was working on my response to “mildred”, when “ethel’s” post came through.
“ethel”,
i think that you are trying sincerely to struggle with the issues that these events present, but that you are blocked by either your need to rationalize your own discomfort or your general and longstanding dislike of me and my expression of my disability.
that “clarence” initially justified his behavior and you and others back up this justification, by stating that my claims to disability were not believable and have been the source of considerable group resentment, then it is ingenuine for you or anyone else to claim that my reaction was not due to his discriminatory behavior in refusing to provide me with ice upon my repeated request, especially when i clearly stated that disability was the reason for my request. that you admit that you confronted him precisely on his “insensitivity” to this issue, further places in doubt that your assertion of his refusal and his “jokes” (directed at my request for the simple accommodation of uncontaminated ice!) is genuine and isn’t jaded by your feelings about me personally.
that you continue to insist that “clarence” was joking when he denied me ice, implying that i should have recognized this as an insensitive joke, amazes me. you don’t allow that 1. i had no reason to think he was joking. and 2. if he were joking, it was in reference to my request for accommodation, and therefore an unacceptable and hostile joke. i didn’t take it as a joke and i don’t believe it was a joke now.
that you continue to assert that my reaction was more problematic than the choice of venue and the actions of the host, stink of the same type of “moral equivalency” imposed on those under attack: to respond to the oppression with greater grace and with greater responsibility and accountability than those committing the initial offense. “clarence”, in your opinion was joking, but i was abusive! amazing!
the argument that those not in attendance don’t have the right or the authority to comment, is a very dangerous argument for all of our human rights work, and disregards the entire discipline of the study of history. human rights activists are always admonished for having opinions about situations we haven’t directly observed.
we base our opinions on our world view and methodologies of analysis, the consistency, reputation and integrity of those who provide first hand accounts of events, and other contributing factors, such as the indisputable facts not in question and previous occurrences and trajectories.
if we have to observe everything we speak out against, then all of our work is equally invalid.
<>finally, the assertion that exchanges lead to separation is the precise attitude that brings us to the current conflict. it is not the exchanges that lead to conflict (the elephant in the living room) but the underlying assumptions, divisions, attitudes, premises and decision. had we had an open dialogue on the resentments regarding my attempt for full participation within this committee, instead of having them fester so that my request for ice, at a meeting place that should never have been selected, we would not find ourselves embroiled in the current controversy. “clarence” would never have had the need or opportunity to deny me my request and ridicule my assertions and i would not have had the opportunity to react the way i did,

the group decided to have an event at an inaccessible venue. (i suppose i could have insisted on a different venue, but considering the resistance to my request for ice, i shudder at the consequences of that assertion!) it was decided by at least three members of this committee (you, “clarence” and “mildred”) that my requests for accommodation over the past few years are the cause of the intolerance of my needs and participation.
that no one has disputed the chronology of events andy and i present, then the only question is if we consider those behaviors to constitute abuse and discrimination, or not. you apparently find “clarence’s” comments to be simply a series of bad jokes, and that i should have understood them as such.
perhaps we will never agree on the significance of the specific events at the retreat. but if we are to move forward and put this behind us as you suggest, then we need to be accountable for the future, we need to be focused on the solutions.
to that end, we must dedicate ourselves to full accessibility, and never again have an event at a venue that does not serve that end. we must assert the rights of disabled people to request accommodations and given that the fuel for this controversy was the lack of acceptance of the veracity of my condition, we must provide leadership in education and self-education in fostering greater understanding of this issue. if we feel that the request is so encumbering that we need proof, we need to establish, at the union level, a confidential protocol. otherwise we should take the request at face value. i don’t see how anything i requested ever would have merited such a test. that these “reactions to emma” “mildred” refers to, occurred even before the retreat, clearly stated by both you and her, in direct response to nothing other than the interpretation of my assertions of need, is serious enough, even if “clarence” and i hadn’t locked horns.
emma

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Ableism in the Human Rights Committee IX

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 <emmarosenthal@earthlink.net>
“Mildred”,
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.
Emma

Ableism in the Human Rights Committee VIII

Andy Griggs responds to “Mildred”
*********************************
Date:     Sun, 13 Aug 2006 23:08:10 EDT_From:     AndyCA6@aol.com
I was hoping that there would be other posts by this time, and that I would be responding to more of this discussion, but “Mildred’s” 2nd response last night (which I did not see until this AM – I am in Colonial Williamsburg, VA at a teacher’s institute until Wed) has made me feel that is necessary to respond sooner. I will do this point by point, starting with her first post, but first let me say that the entire premise of her argument is incorrect: the issue facing this committee is disability and access, not how one responds to discriminatory or abusive behavior.
“Mildred’s” first post:
“I appreciate Andy’s giving us a clear idea of Emma’s disability.  Since she has always been active and vibrant on our committee, it is hard to believe that she really has a severe disability. I have to say that the appeal to sympathy that Emma has shown in various ways has a tendency to cause people to feel uncertain how much is actual disability. A matter of fact explanation by her of her condition would have been better and probably elicited more of our understanding”
Emma has explained her disability several times to the committee, at meetings, in conference committee meetings, and on this discussion list – it is why she often misses meetings, and she has explained the illness when asking for assistance. Why does it take me to explain it before people understand it–this is another of the indignities she (and unfortunately women in general) still suffer – that a man’s opinion or stating of fact is given more weight. Even at the retreat, she gave “Clarence” a “matter of fact explanation” when she said many had weakened immune systems and the ice could compromise that (and “Clarence” continued to refuse to provide ice – until others asked him to, and then only after joking about someone “making a motion.”)
“I myself have always felt warmly admiring of her work, but I admit to being very unhappy about her reactions on that hot afternoon. This is not to deny that “Clarence” is abrupt and pretty fussy about his house and that had a role to play.”
I do not think anyone felt happy about what happened that day, whether it was “Clarence’s” behavior, Emma’s response, or our own response (including my own lack of confronting “Clarence”). I think that no one expected this to happen, and we were like deer caught in a headlight.
“(It is not true that “Clarence” has allowed people to congregate in his house previously.  I have been at the previous retreats and we all know that, except to use the bathroom, we were asked not to use the house).”
I have to strongly disagree here-I never mentioned congregating in my original note. In the past “Clarence” has told people they could go into the house to cool off, escape the sun, and has even sat in there with us-talking to us about the painting and his house. This time, he specifically went and told Emma she could not be in the house (in private), that the retreat was outside-another example of abusive behavior, whether or not she was disabled. If it had been you, “Mildred”, or anyone else who needed to escape the heat, would he have said the same-or if he had, would it be appropriate? This also brings to the issue of whether this was a social function or official union committee event.
“I was willing to accept “Clarence’s” foibles in exchange for his hospitality and the hard work entailed.”
Interesting that we call “Clarence’s” actions “foibles,” and that someone initially who asked for accommodation (May I have some clean ice?) and ignored and ridiculed because of that request, who walked in to avoid the confrontive behavior that was growing, and who finally exploded “uncontrolled anger”_ and “causing an unproductive and disturbing scene.” This is outrageous!
Was it not “Clarence’s” “foibles” that caused the scene? His teasing and taunting and abuse?  Emma did apologize for her blow-up in her letter as well. Lest we forget the past, how many human rights activists (read feminists,  Black Panthers, anti-war activists, Martin Luther King, Malcolm X)  have been told “don’t be angry or militant.”  “Be nice, don’t be so pushy,” ad nauseum.  And how often have they ignored that advice? It might not have come to Emma’s blowup, if a few people had refused to accept “Clarence’s” “foibles!”
“Mildred’s” second post:_“Michael-  I find it singularly inappropriate of you to attempt to analyse what happened at a retreat where you were not present!   Discussing the issue of disability rights is welcome, but don’t base your ideas on an occurance at a meeting that you did not attend.”
As I said before, this issue is bigger than the events of the retreat, and bigger than the individual’s actions. The issue is human rights-in this case legal rights by law-and the rights of accessibility to everyone. As a member of the committee, Michael has every right to respond to that issue – he spent less than two paragraphs talking about the retreat in both of his responses, but rather addressed the real issues facing the HRC at this time. 1) Meetings at inaccessible and/or in hostile environments (remember that a hostile working environment includes humor and teasing-by law and legal precedent) must cease; and 2) How should an individual or our committee respond when there is a act of discrimination or hostility witnessed?
“I  don’t feel this event merits all this deep political attention.”
If this does not merit deep political attention-then maybe we are all on the wrong committee. This committee above all others in UTLA (or should we say it is the purview of the Ably Disabled Committee) should be addressing the issues of ADA and accessibility-not only the shameful and outrageous way LAUSD treats employees with disabilities (a company doctor determining the degree of disability, refusal to provide reasonable (if any) accommodations, etc), but those within our union, and especially within our committee-we must be able to analyze and criticize our own actions as well. For example, if there was so much concern about the way people reacted to Emma and her requests for assistance when working on the conferences, why were they not brought up and discussed in order to more clearly identify the issues at work._I know that if this is not on the agenda for this committee, and it continues to hold inaccessible meetings-it is this committee that should be disbanded by the Board of Directors because it puts the entire union at risk and legally liable.
Finally I have to remind us all of how important Emma’s work has been over the past two years. Without her work, we would not have had two incredibly successful conferences. It was she who recommended trying to expand membership in the committee to be more inclusive, and asked for it to be included on the retreat agenda.
Let it be said that this committee is still the “heart of UTLA” and that when faced with internal conflict, we faced it head on and dealt with it. Let’s work together to address our shortcomings, and moved forward stronger than ever.
Yours in ongoing struggle,_Andy

Ableism in the Human Rights Committee VII

This Post was made by activist Linda Baughn, another Committee member.  The Leadership Conference is an event that draws much of UTLA leadership; in the past, to Palm Springs.  Because the hotel/conference center we have been meeting at for several years, closed down, this year we met at a location in La Quinta.  Many still refer to the event as “Palm Springs.”

——– Original Message ——–_Subject:     [utla-hrc-discussion] ongoing discussion about the retreat_Date:     Sun, 13 Aug 2006 10:15:29 -0700 (PDT)
Compañeros:
I have been reading the posts about the retreat, but I haven’t posted because_a) I’m teaching this summer on C track–an activity which I love but which seems to take more energy every year_b) I wasn’t at the retreat_c) much of what I wanted to say has been said more eloquently by Andy, Emma and Michael.
But I think I want to weigh in on this before the Leadership Conference in Palm Springs.
When I got the first posts, I was saddened but not surprised. I could see at last year’s retreat the potential for what happened this year. Emma was obviously uncomfortable; the physical situation was not accessible, and although I and others did our best to help make her comfortable, nobody should have to ask. Physical accommodations should be accessible and take into account everyone’s needs. That’s the bottom line. Hosting an event requires taking that into account first and foremost. I have not always been aware of this–I thought my house was accessible until my comrade shattered her knee, and then I realized that it takes four steps up to get to my door… But it is no surprise to anyone on our committee that one of our valued members requires reasonable accommodation. And hosting an event means putting the comfort of one’s guests primary. It may mean some wear and tear on the property–but I hope this committee would put people first.
I know I was not at the retreat, but I can comment on the e-mails I have read and in interactions I have witnessed in other situations with this committee in particular and with the left in general, and I think that it is a problem when women become the enforcers of the sexist dictum to be “ladylike.” Women and girls are held to a different standard of behavior: we are not supposed to complain (why is the word for complain also the pejorative term for women in general that refers to a female dog?) and if we do complain we are required to do so “nicely.” When your rights have been denied, your sisters should not chastise you if you do not defend yourself nicely–they should have your back. Well behaved women rarely make history.
One last point. We should welcome this discussion as an opportunity for growth, personally and as a committee. The rights of handicapped people as human rights could be the focus of our next conference, perhaps. I would like to see a discussion about euthanasia–I  probably disagreed with most of the committee about the Terri Shiavo case, for example, seeing it less about the right to die vs. the religious right and more about the slippery slope towards withholding of care from those whose limited prospects for recovery make them a financial burden–useless eaters, as the Nazis said. I think that political discussion of these issues is interesting–important–crucial. If the Human Rights Committee doesn’t want to relate personal situations to political ideas, something is wrong.
I look forward to seeing everyone in Palm Springs who can be there and continuing this important discussion.
In unity and in struggle,
Linda

Ableism in the Human Rights Committee Part VI

 Michael Novick, a longstanding member of the Human Rights Committee as well as Anti-Racist Action, Posts to the list, “Mildred” and I both respond to his post.  Of note is “Mildred’s” assertion that since Michael was not at the retreat he should not comment on this issue.  Should we apply that standard to all of our work, as human rights activists we would be remiss in speaking out on any issue we weren’t witness to and history as an academic discipline would be a meaningless exercise.    In a later post, I speak to this issue.
Emma

——– Original Message ——–_Subject:     Re: [utla-hrc-discussion] [Fwd: Re: your email]_Date:     Sat, 12 Aug 2006 01:43:45 -0700_From:     Michael Novick
I feel compelled to write at greater length in response to the issues _raised by this on-going controversy and the persistent tendency — _self-defined by “Mildred.” in her post, I believe — of “blaming the victim” _(after “victimizing” the person). I feel that aspects of a willful _blindness to disability issues, and to the responsibility of human rights _activists, trade unionists (not to mention colleagues, comrades and people) _to accommodate people with disabilities, have been exacerbated by a _tolerance of male chauvinism and a lack of feminist consciousness or _women’s solidarity within the committee. In this respect, I find a _not-acceptable degree to which the so-called “progressive” movement lags _behind the larger society and the capitalists. Sadly this is all too _common. Elections at KPFK for example produce electoral outcomes with less _diversity, less representation for women and people of color, than for LA _city council.
Attributing hostile remarks by a white male professional homeowner to a _disabled female as ‘humor’, or blaming the recipient of such mistreatment _for getting angry (ignoring her previous attempts to deal with it, and _ignoring her explanations of what went on), and raising questions about _whether someone is “really” disabled — if that took place at one of our _schools, and was directed at a student or a teacher by an administrator, we _would all hopefully be on top of it. But when such internalized _oppressiveness takes place within our own ranks, we fall into denial, _excuses and worse. We need to take ourselves and our work more seriously, _and treat ourselves and each other with more respect, or we cannot expect _anyone to pay the least attention to our pious declarations about human _rights and social responsibility.
I did not attend the retreat because of a schedule conflict, but honestly I _might not have come anyway because I found the location pretty inaccessible _the one time I did come, and I don’t have disability issues on access. The _union has a legal responsibility to make meetings which are not simple _socializing but actual strategic planning accessible to all. The Human _Rights Committee in particular has a responsibility to put its money where _its mouth is.
People who could “hear” Andy’s explanations yet never “heard” Emma’s quite _clear statements over several years about the nature, extent and perversity _of her disability need to ask themselves why. People who could make more _exceptions for “Clarence’s” “humor” than for Emma’s anger need to do the same. _Regardless of people’s (apparently quite negative) attitudes towards Emma _and her “personality,” the HRC has a two-fold responsibility now:
a) an internal education, discussion and struggle process about disability _rights issues, their intersection with other forms of oppression such as _racism, sexism and elitism, and the way they are internalized and manifest _within progressive bodies and institutions such as our committee and union. _We might want to look for additional resources within the union, such as _disabled activists and perhaps LGBT people who have greater sensitivity to _issues of immune-impairedness.
b) In the light of that discussion, to review and re-discuss any decisions _taken at the retreat at the next available opportunity for a well-noticed _general meeting of the HR committee at UTLA early in the school year, a _meeting that is accessible to the disabled and hospitable to the full _participation and honest discussion of everyone who has been or would like _to become involved in the work of the committee.
Consider those motions for the agenda of the first HRC meeting(s), or to _the steering committee. If people are meeting at the leadership conference, _I feel they need to agree to those two proposals, and then adjourn until _the two discussions can be put into effect. I myself did not sign up for _the conference (partly over the hotel issue) and will not be there. I have _conflicting responsibilities now on both the Saturday and the Sunday.
Although I am not a Maoist, I always liked a couple of Mao’s aphorisms — _”where the broom does not reach, the dust does not vanish of itself” is one _of those, meaning we need to engage in criticism and self-criticism to _overcome our own retrograde tendencies such as male chauvinism, privilege, _or the projection of fear and denial onto “others.” Otherwise they _accumulate and fester and eat us up from within. Another good one is “A _revolution is not a dinner party” — meaning that we cannot expect to _impose goodie-goodie middle class niceties of expression on struggle over _oppression and exploitation. It is not the job of people experiencing _oppression, discrimination and mistreatment to learn how to “cope” with it. _It is the job of people seriously interested in getting free of capitalism, _imperialism, and all their attendant social ills to examine our own social _and political practice, and to come up with effective strategies for _building the kind of solidarity and struggle it will take to get the job done.
Comradely,
Michael Novick
PS I wanted to take exception to one thing that Emma said — that men do _not fear becoming women. Her main point (that able-bodied people fear _illness and disability and therefore reject or marginalize disabled people) _is true. But it is also true that men often fear being “unmanned,” and that _both men and women often exceptionalize certain women and stigmatize others _out of fear of women’s solidarity. This is a very corrosive tendency.

<> ——– Original Message ——–_Subject:     Re: [utla-hrc-discussion] [Fwd: Re: your email]_Date:     Sat, 12 Aug 2006 08:34:39 -0700_From:     Emma Rosenthal <emmarosenthal@earthlink.net>
Thanks Michael. _  I  appreciate your willingness to come forward and take a principled stand on this issue.  I have little choice, It is with me all the time. It’s not an identity that gives me pride.  It isn’t a cause I ever wanted to champion.  I have always understood disability rights as essential to the human rights paradigm, but while it is becoming more and more central in my life, part of my resentment is that I really want to be working on other issues.  It’s just that the discrimination I face makes all other political activity almost impossible.   I decided awhile back to embrace the ACT UP slogan; Silence = Death; the Audre Lorde admonition:  “My silence didn’t protect me.  Your silence won’t protect you.” Though retreating into the small place that apparently even seasoned human rights activists have ascribed for people like me, is tempting.    It is clear that you have put much time into studying this issue and understand it quite thoroughly.  Your point about men fearing being unmanned is well taken.  I stand corrected.  One exception I have to your polemic is where you say “The union has a legal responsibility to make meetings which are not simple socializing but actual strategic planning accessible to all.”   All UTLA official events, including social events, must be accessible.  Social events are organizing tools and if they are sponsored by the Union (even if funds are donated, ) can’t discriminate.  Mardi Gras night at the Leadership Conference,  Area parties, etc. are required to  be fully accessible or UTLA would be practicing discrimination and would be in violation of human rights and liable in a law suit.  This does not extend to private events that members of UTLA might hold.  So that if a group of teachers wants to go to happy hour at an exclusive club (exclusive as in: stairs!)  they can. It is not illegal to discriminate in one’s private life.  If members of this committee want to have a party with strippers and a freak show, and tell racist jokes they can.  They just can’t call it an official UTLA event and they certainly can’t use UTLA funds to pay for the gathering.   If they use UTLA resources to advertise the event, or a school bulletin board, then they would be in violation of civil and human rights.
In solidarity,
Emma

<>
<>——– Original Message ——–_Subject:     Re: [utla-hrc-discussion] [Fwd: Re: your email]_Date:     Sat, 12 Aug 2006 21:13:39 -0700 (PDT)
Michael-  I find it singularly inappropriate of you to attempt to analyse what happened at a retreat where you were not present!   Discussing the issue of disability rights is welcome, but don’t base your ideas on an occurance at a meeting that you did not attend. You speak of “hostile remarks” that you did not hear and simply ” getting angry” is not how anyone would describe what occurred. I don’t feel this event merits all this deep political attention.  I doubt that the Human Rights Committee, or any other UTLA committee, would  accept a screaming tantrum directed at the whole group as an excusable way of handling a political or any other type of issue. Realizing that Emma was out of control, I felt sympathy and concern for her welfare, until I read the three page political diatribe, instead of some degree of self awareness which might result in healing for her and the committee.
“Mildred”

Ableism in the Human Rights Movement Part V

August 27 2006 (08:59:00) US/Pacific

Simultaneous to my post, “Mildred” posted the following message (emphasis mine)  following this post are previous posts, including one by Mildred a year ago, contradicting her current position:
——– Original Message ——–_Subject:     [utla-hrc-discussion] the retreat_Date:     Fri, 11 Aug 2006 19:27:30 -0700 (PDT)
I appreciate Andy’s giving us a clear idea of Emma’s disability.  Since she has always been active and vibrant on our committee, it is hard to believe that she really has a severe disability. I have to say that the appeal to sympathy that Emma has shown in various ways has a tendency to cause people to feel uncertain how much is actual disability. A matter of fact explanation by her of her condition would have been better and probably elicited more of our   understanding. I am sorry if this sounds like blaming the victim,: it is intended to explain how I have noticed that various members have reacted to Emma. I myself have always felt warmly admiring of her work, but I admit to being very unhappy about her reactions on that hot afternoon.  This is not to deny that “Clarence” is abrupt and pretty fussy about his house and that had a role to play. ( It is not true that “Clarence” has allowed people to congregate in his house oreviously.  I have been at the previous retreats and we all kniw that, except to use the bathroom, we were asked  not to use the house). I was willing to accept “Clarence’s” foibles in exchange for his hospitality and the hard work entailed._It was an extremely hot afternoon and I’m sure it affected Emma’s condition very badly, but the uncontrolled anger was not healthy for her or our group. I hope that you, Andy an Emma, can realize that there is no excuse for that. Raising the issue to a political level may be useful in some contexts, but not to avoid a personal responsibility for causing an unproductive  and disrturbing scene.
“Mildred”
*******************
Note to blog readers:
Over the last few years, I had made a few posts to the HRC list regarding my disability.  To contest “Mildred’s assertion that I had been less than matter of fact, I reposted two of them during this current dialogue. The first post has been edited for this blog;  I removed a portion of the message that pertained to HRC business regarding the conference as it doesn’t pertain to this discussion.  The portion that does pertain to this issue remains unchanged from the original post of a year and a half ago.  Note that the second message I posted was actually “Mildred’s” response to a post of mine: the introduction to this blog in which, in response to that introduction, she praises me for my ability to explain the same condition she how accuses me of failing to adequately describe.
She has not, to date, apologized for, acknowledged or explained the fact that just a year ago she had praised me on list for my ability to describe my disability, while now, in defense of “Clarence” she accuses me of bringing his abuse upon myself for failing to adequately make the case for that same disability.
Amazing!
Emma
****************************************_——– Original Message ——–_Subject:     [utla-hrc-discussion] 1. for the record, matter of fact! [Fwd: IMPORTANT CONFERENCE UPDATE]_Date:     Mon, 14 Aug 2006 01:28:22 -0700_From:     Emma Rosenthal <emmarosenthal@earthlink.net>
matter of fact and for the record: here is a  one of the posts i placed to the list regarding my disability._for the complete original post, go to:
http://lists.riseup.net/www/arc/hrc-disc/2005-05/msg00017.html
——– Original Message ——–_Subject:     IMPORTANT CONFERENCE UPDATE_Date:     Mon, 09 May 2005 20:45:06 -0700_From:     Emma Rosenthal <emmarosenthal@earthlink.net>
Well, the conference is only a few days away and most of the loose ends _are being tied up.,,,
On a personal note, I do want to explain something that if it isn’t _clear could cause misunderstandings the day of the conference.  I have a _physical disability that limits my personal strength.  some days I am _better than others.  Some days I can’t get up at all.  I never know what _kind of day it’s going to be, but pacing myself and getting enough rest _before Friday should help.  I do doubt I’ll be able to hang in for the _whole day on Saturday.  It’s a rare day that I can go that long, and _I’ve been pretty weak the last few weeks.  I plan to be there Friday, _and will be really disappointed if I can’t make it, but that’s the way _things are sometimes.  I’ll try to have everything organized in the _event of my absence  (but no 7 step lesson plans!)  So, if you see me _sitting down while everyone’s working, or don’t see me at all, that’s _why.  It’s not laziness or hautiness, it’s just incapacity.  I trust you _will all be understanding.
Check our web page for updates and see you on Friday!
http://home.earthlink.net/~utlahrcc
Peace with Justice,
Emma
***********************************
——– Original Message ——–_Subject:     2. for the record , matter of fact. [Fwd: Re: [utla-hrc-discussion] In Bed With Frida Khalo: On disability and activism]_Date:     Mon, 14 Aug 2006 01:28:58 -0700_From:     Emma Rosenthal <emmarosenthal@earthlink.net>
here is the second email i sent to the list, with “mildred’s” commentary.  for the original post, go to: http://lists.riseup.net/www/arc/hrc-disc/2005-10/msg00001.html
emma
——– Original Message ——–_Subject:     Re: [utla-hrc-discussion] In Bed With Frida Khalo: On disability and activism_Date:     Sat, 1 Oct 2005 16:08:01 -0700 (PDT)
Dear Emma-  Thank you for sharing this with me. Your writing is very good.  This may be your calling.  I think you are on the right track with your desease ( is that a correct term?). On the positive side, I have a cousin who had that desease and, after some time suffereing terrible pain, it suddenly disappeared and she has been free of it since.
Mildred
Emma Rosenthal <emmarosenthal@earthlink.net> wrote:
Dear ones,
I want to invite you to visit my blog. It is a daily journal of my_    struggles with a little known illness, fibromyalgia, which has, for the_    most part, especially in recent months, taken me away from activism and_    confined me to my bed. I have shared perhaps pieced of what I am going_    to share here, with some of you, but for the most part, this is a bit of_    a coming out. I should include in this introduction, for those who don’t_    know, that I am a single mother with a child who also has significant_    health issues. We live in the isolation of what I call, quite seriously,_    the single mother ghetto, the way this society isolates women and children.
There is much shame and isolation around illness and disability in our_    society. More difficult than the disability, is the marginalization that_    has come with it. After a relatively minor car accident last April,_    which brought about an especially severe relapse, I had to retreat from_    most of my activity, including my activism, which very much defines for_    me, who I am. Having been reduced to being a sick woman in a bed, I have_    been called forth to make it my activism. So I have started this blog._    Bringing noise to the silence, I am reminded of that quote by Audre_    Lorde: “My silence had not protected me. Your silence will not protect_    you.” Silence seems to protect. It protects me from the cruel statements_    even well meaning people make. It protects me from harsh judgement. It_    protects me, to the extent that I can hide my disability, from the_    discrimination that comes with such a condition. But in silence there is_    complicity to the isolation. In isolation and silence there is no_    transformation.
I have named my blog, “In Bed with Frida Kahlo.” It’s a playful title,_    toying with both Frida’s prolific choice of intimate partners and her_    infirmity. Frida, a complicated woman who was an artist and an_    activists, having endured both polio and a devastating trolley accident,_    was confined to her bed for much of her life. She suffered great_    loneliness and despair which she chronicled in her diary and her_    paintings. My favorite quote of hers is “I must fight with all my_    strength so that the little positive things that my health allows me to_    do might be pointed toward helping the revolution. The only real reason_    for living.” It is often quoted. Less quoted are the words that preceded_    it:_    “I’ve been sick for a year now…. I don’t feel any pain. Only this…bloody_    tiredness, and naturally, quite often despair…I feel uneasy about my_    painting. Above all I want to transform it into something useful. for_    the Communist revolutionary movement, since up to now I have only_    painted the earnest portrayal of myself. But I’m very far from work that_    could serve the Party.”
She doubts the value of her art because it is so personal, and yet, it_    is through her paintings that we get to know her ideas, her values, her_    politics. This quote speaks to the fact that we never really know the_    impact we have on the world, –harder yet to know from the isolation and_    confines of bed. Frida’s story resonates with me, though I live my life_    very differently than she did. I don’t drink, I eat healthy, and for the_    most part, organic foods, Aside from occasional hits of shesha,(flavored_    tobacco, from a hooka pipe) I don’t smoke. I believe I have better taste_    in men, and I am not nearly as sexually prolific as she was. But we_    share art, socialism, and illness, and her story has helped me_    understand my own; to put it in a greater social and political context._    She died when she was only a few months older than I am now, many_    suspect by suicide, certainly by overdose of morphine to kill the pain_    that she lived with most of her life. I am determined to out live her by_    many years.
The writer’s life is an open book. I hope to provide in this blog, an_    honest account of life with illness, hoping, in my outburst to bring_    something to those who similarly suffer and to add, from my sickbed, to_    the body politic. I do, as a writer, have very few secrets, but I am_    very careful with the details I provide of those whose lives touch mine._    Forgive me when I am vague. It is not myself I am protecting, but the_    privacy of others. The decision to tell their story should be theirs._    Not mine.
Fibromyalgia strikes mostly women, seems to be neurological and_    immunological in origin, has no known marker or pathogens, is not_    contagious, and receives little research money. Symptoms include_    fatigue, pain, cognitive and memory difficulties, gastrointestinal_    problems, chemical sensitivity and depression. The severity comes and_    goes. Most of us with the condition are deceptively healthy looking. We_    have periods of greater activity and long periods of relapse. About two_    years ago I managed to hike 6 miles on my favorite trail in the San_    Gabriel mountains. It took me four hours instead of three, I didn’t hike_    alone, as I would have before I had become ill, and it took me days to_    recuperate, but I did it. Today I would have difficulty walking around_    the block. And yet I don’t doubt that I will find myself on a hiking_    trail sometime within the next year, and then back in bed once again_    some time after that.
Before I was ill, I was a full time classroom teacher in Los Angeles in_    a job I had held for 18 years. I also coordinated two educational_    programs and was involved in my union. Since the illness, I have had_    great trouble finding paying work. While some jobs have proven difficult_    for me to maintain because of the condition, more distressing are the_    number of requests that I work in a volunteer capacity to provide skills_    I am capable of meeting, from people who are more than willing to pay_    able bodied people to provide the same work. The constant reminders that_    my work has no monetary value add to my sense of marginalization and_    isolation. It’s not just vanity. I need the money. Due to the diligent_    work of teachers unions, I, like other disabled teachers, receive a full_    pension, half a teacher’s salary. This is much better than social_    security disability benefits, which would put me within the established_    definition of poverty. I also have health care coverage from my previous_    employment, but unfortunately, most of the health care modalities that_    help me with this condition, are not included in the coverage. There is_    very little that traditional Western medicine can do to help with_    fibromyalgia. While I could, in my simplicity, live on my pension, were_    I not sick, the added costs of my care, keep me in constant need of_    resources.
In my efforts to bring meaning and healing to my life, I struggle with_    the isolation that comes not only with the illness, but the_    marginalization that accompanies it, the inability of the social fabric_    to provide support, community, healing: our busy lives, the distance_    between intimates, the pithy values of the capitalist system that blame_    the victim, that sees all problems as individual and not collective, and_    the overall lack of accessible healthcare. One of the most isolating and_    marginalizing factors is what I call spiritual fascism. a bit of_    “survival of the fittest” that has entered into our daily lexicon of_    illness. “What did you do to create this?” “Can’t you just psyche_    yourself up and snap out of it?” “If you were more spiritual…” “When I’m_    sick I just meditate and it goes away.” “It’s god’s punishment.” “What_    did you do in a past life to bring this on yourself?” My favorite one:_    “Why did you choose this illness?” From the Christian right to New Age_    spirituality, the ideology that we somehow create our own suffering,_    that we can determine our own reality, I feel is rooted in American_    individualism and the break down of any understanding of collective_    responsibility and mutual aid, that illness might be a collective_    concern, that we don’t create our own reality, but rather, contribute to_    the collective reality, that racism, sexism, greed, violence and illness_    are real factors, beyond our spiritual imagination, that they are_    material and require a deep and significant response.
There is much indication that this illness is caused by a combination of_    trauma and environmental toxins. To that extent it is very much a_    disease of our times, caused, not by the individual, but by our social_    structure, the daily traumas of the violence of capitalism, the_    bombardment of dangerous toxins, in a society that puts greater value on_    profit, than on human need.
A wise rabbi once said “ The history of all hitherto existing societies_    is the history of class struggle.” (Actually that was Karl Marx, but_    what was he, if not a wise rabbi?) And my history is the struggle not_    only with the limitations of this condition, but the limitations and_    marginalization imposed by a corrupt civilization that has abandoned_    mutual aid for blame and guilt.
Since the accident I have had to pare down my activism. I have found_    myself unable to get out of the house much, often unable even to sit up_    in bed. I have not been able to continue projects I had started, and_    have had to reinvent myself again, as I have had to do repeatedly with_    this condition. Having been reduced to being a sick woman in a bed, I_    have decided to embrace it, to explore it, to bring my activism to it,_    to recognize my personal struggle as part of the universal struggle for_    human rights, dignity, health care, community. I cannot believe my_    isolation and loneliness is unique. I understand it to be part of a_    dialectic that must affect many people, all alone, all struggling for_    access, community, for health care.
I am beginning to come out of the relapse and find it is easier, in_    hindsight to appreciate the depth of the relapse, to forgive myself the_    despair and anxiety it has caused, to timidly look forward to the_    possibility of finding work and hopefully meeting my needs. The more_    severe neurological symptoms have abated. I can walk a bit further and_    use a cane or a walker less and less. I have fewer days where I can’t_    sit up in bed. I can write again. I am very grateful to Dr. Michael_    Hubka, an extraordinary chiropractor, Dr. Amy Swei, my acupuncturist,_    Greta Craddolf, my massage therapist, Dr. Kate Bourne, my therapist, Dr._    Joseph Haraszti, my psychiatrist and pharmachologist and Guadalupe_    Medrano, my cafregive (who is wonderful, and looking for more work). My_    son, Leon and my partner, Andy Griggs, have been enormous supports, as_    have my mother and several close friends (Sonali, Jim, Stephanie, Dima,_    Huda, Ban, John, Hussam, Linda, Darlene, Shraga, Sam, Dorothy, Sari,_    Tannery, Mary, Ariela, Linda, Bob, Alvaro, Mansoor, Steve– I hope I_    didn’t leave anyone out!) I must also acknowledge that my auto insurance_    company has been extraordinary in this whole process. Finally, I want to_    thank the Human Rights Committee of United Teachers Los Angeles for_    their gracious support and accommodation, which has allowed me increased_    activism and participation. That so many activists jump in to do what I_    cannot, allows me to give what I can. Perhaps the hardest part of this_    whole ordeal is that I am not short of vision, but the vehicle to bring_    it to fruition.
Frida has been accused of painting self-portraits to get attention, an_    unfair accusation from those who can find community by leaving their_    homes. We all need attention, communion. I am sure attention is one of_    my motives for this endeavor, but more importantly is the hope that I_    can create connection, hope, clarity, vision to those who suffer, as_    well as those who go about their lives, caught up in the fight for_    survival, the treadmill of life.
You can find my blog at http://inbedwithfridakahlo.blogsource.com/_    Currently it includes my bio and a few posts. You can respond to my_    posts and subscribe to the blog. In the future it will include photos_    and drawings, chronicles of the daily indignities of disability,_    insights, wish lists, poetry, despair and hope. Most posts will be brief_    annecdotes and insights, much shorter than this introductory rant.
Thank you for permitting me this indulgence.
Peace with justice, and above all else,
Love,
Emma Rosenthal_    Baldwin Park, CA_    10/1/05
©2005 Emma Rosenthal All Rights Reserved. Permission to post or forward_    in entirety including the copyright

Ableism in the Human Rights Committee- Part IV

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 <emmarosenthal@earthlink.net>
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.
Peace with Justice,
Emma