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 <firstname.lastname@example.org>
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 <email@example.com>
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 <firstname.lastname@example.org>
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 <email@example.com> wrote:
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