Daily Archives: August 27, 2006

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.
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.
****************************************_——– 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:
——– 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!
Peace with Justice,
——– 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
——– 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.
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,
Emma Rosenthal_    Baldwin Park, CA_    10/1/05
©2005 Emma Rosenthal All Rights Reserved. Permission to post or forward_    in entirety including the copyright