Sunday, January 17, 2010

Dear followers of Judi’s blog,

With deep sadness we want to let you know that Judi died late last night [Saturday]. After an uncomfortable day – her breathing was unusually labored for much of the day – she finally relaxed for a while. Around 10:00 Marty, who had been sitting with her for some hours, tried to give her some medication and realized that she had passed away.

If you’re reading this you’ve obviously been keeping up with the blog and know the wonderful, sometimes heroic way in which, like much of her life, Judi faced the inevitability of her own death. We know that so many of you loved Judi and will miss her.

In keeping with her wishes and instructions, Judi’s body will be cremated in the next few days and we will decide later what will happen to her ashes.

Judi’s blog will be kept active for the time being so please feel free to post comments that you might like to share with the rest of us “followers.” Also, before she died Judi indicated that she didn’t want people sending flowers, and we want to honor that. If you want to mark Judi’s memory in some tangible way, it was her wish that contributions be made to either:

The National Coalition of Mental Health Consumer/Survivor Organizations
Checks can be made out to
NEC [National Empowerment Center]
Note on the check that it is “for NCMHCSO in honor of Judi Chamberlin
. Checks can be mailed to:

National Empowerment Center
599 Canal Street
Lawrence, MA 01840

or
Visiting Nurse and Community Health
Checks can be made out to VNCH. Note on the check that it is for “Hospice in honor of Judi Chamberlin” and can be mailed to:

Visiting Nurse and Community Health
Donations
37 Broadway, 2nd Floor
Arlington, MA 02474
Or on line at: http://thevisitingnurses.com/Charitable_Giving.htm


Julie and Marty

34 comments:

  1. I will miss her profoundly. I loved her dearly.
    Hopey in Iceland

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  2. Memories of Judi Chamberlin - dignified activism



    I first met Judi in 1988 at the start of my own activism at the annual Mind conference when her seminal text On Our Own [first published in 1977] was published by Mind and deservedly won the Mind Book of the Year Award, then at a landmark conference in Brighton entitled ‘Common Concerns’. Mind also supported this 3 day event with international survivor speakers from the USA and Canada such as Judi, ’Howie the Harp’ and David Reville. Practically everyone who was active in the 80’s either attended or knew what happened by word of mouth from that conference, it was a pivotal moment in time, just as when our Dutch peers came over to assist british survivors in the formation of Patient Councils. Judi was inspirational to me as there were few women leaders in the british survivor movement at that time, and here was a world leader talking about user-run, not user-led services which for some of us was a dream we thought not possible and Judi had made it real in her country.

    What was so striking to me about Judi was her total lack of ego and ‘stardom’. Frankly, even if she had been I certainly would have forgiven it because she had the intellect, hard work and unconditional compassion to back everything she did, and at a time when there were not the financial rewards there can be now. Judi wasn’t interested in kudos and personal status, all she was interested in was furthering the greater good of survivors, for us all to be met with love, compassion and with patient controlled alternatives to psychiatry.

    Face to face, one to one, she was no different, she was interested to share experiences with us, would give us her full attention and was kind and generous. She always made you feel like whatever you had to say mattered. Judi was dignified, I never saw her raise her voice or rant at anyone, yet she could calmly and effectively argue the most seasoned opponents under the table. She was also a fine academic but a good one in that she could make a well read argument accessible to anyone.

    The year after I spoke alongside Judi at a conference in Montreal for Canadian survivors. We also shared a hotel room and unsurprisingly Judi was a gracious room mate. To sit beside someone who was living legend to me was very special indeed. Even when I know she disagreed with her peers she would do so quietly and with respect, never putting down another’s thinking. She made people think not only by the sheer strength of her words, but also how she imparted them, measured, powerful. She was deadly serious in her work, driven and dedicated. Judi was a role model to me because she embodied how I felt activism should be, how we could best conduct ourselves as activists. She was also aware of how difficult it could be too and how survivors were also capable of cannibalising each other and to my mind she led by example by keeping her focus on the work in hand.

    Whenever Judi visited the UK she would take me and Peter Campbell out for a meal and we treasured our time with her and valued what we learnt and shared with her.

    To understand what Judi gave us all over 30 years of her life listen to her speak at the 2007 World Psychiatric Association conference on ‘coercive treatment in psychiatry’, which is a bright shining beacon to survivors across the world; http://video.google.com/videoplay?docid=3396224219182374265

    Her last sentence ‘nothing about us without us’ will live in my heart forever.



    Louise Pembroke, United Kingdom

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  3. Julie and Marty,

    I share with the other "followers" of Judi's blog my sadness at her death, yet commend her courage and dedication with which she shared her experience with us.

    I had planned to make a request of her today, actually; instead I humbly make it of you. I have had COPD for 30 years, in fact have until recently been a hospice patient (disqualified because marginally improved). For the past four years I've been the moderator of a COPD message board:

    http://members.boardhost.com/COPD/

    with several hundred members. I'd like to ask your permission to post the url for Judi's blog. It would do so much good for our people, who tend to avoid discussion of end of life issues, to be able to read it. here would be no interaction with you, just the url for all to read and hopefully discuss among ourselves. Please--there's no ned to respond right away--at your convenience.

    I am glad Judi's passing was peaceful, and again commend her (and your) courage and honesty.

    Sincerely,


    John Ottinger
    Madison, WI
    (608) 238-1940
    john1149@tds.net

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  4. Spending the past several months caring for Judi has been quite an experience. I read her book "On our Own", I cared for her 2 hours every week day, I have learned so much about so many different things (people, culture, politics, etc...). One of the first things I did as one of her caretakers was go to her "funeral/party" (fully arranged by her). As you can imagine, this was a new experience and one I'm not sure I will ever have again, nor forget. Now several months later, actually dealing with her death will take some time. It is a great loss to all who knew her and she will be missed not only by me but by her family and the thousands of friends and followers she has out there. I have known her only a short time but she has made a great impact on me as a person. - Nancie from VNCH

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  5. How do I say farewell to my hero and mentor? From the first day I met her 32 years ago till her last day she has inspired me and taught me so much.When a fellow Mental Patient Liberation Front member urged me to read her book, On Ou Own, and meet her I had no idea how my life would change. She and I helped start the Ruby Rogers consumer-run drop in center and the Empowerment Center, but beyond specific activities there was the fire that she lit in from my smoldering embers and that she lit in many others. I am so glad she made it to Alternatives in Omaha this year. Judi we will miss you, but never forget you and your torch, which we will carry on.

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  6. JUDI CHAMBERLIN - 30 October 1944 to 16 January 2010

    Judi has been a good personal friend of mine since we met in Mental Patients Liberation Front in 1976, and she has been a unifying leader with so many organizations in our mad movement, including for many years on the board of directors of MindFreedom International. I do believe Judi has been on our MFI board for about 20 years.

    At Judi's request, I made a brief YouTube video for the celebration of Judi's life this past August. You can find it by googling:

    judi chamberlin living tribute by david oaks youtube

    I'm so glad Judi and I had a chance to visit when I got out to Massachusetts in October. As many have noted, she was so supremely pragmatic about the dying experience, as one can read on her blog here.

    I asked Judi what I could do to help.

    Judi said, "Remember back in MPLF? You put up a sign on the office wall that said, 'End Psychiatric Oppression by Tuesday.' That's what I want. End psychiatric oppression by Tuesday."

    Judi has sometimes been called the "grandmother" of the mad movement, especially because of her amazingly influential book in 1978, On Our Own.

    When we celebrate Martin Luther King, Jr. on his holiday tomorrow, 18 January 2010, let's also remember all late leaders for a nonviolent revolution in all justice movements, including Judi Chamberlin.

    And I especially want to say that Judi so admired the work of her dear friend, the late Rae Unzicker. Mentioning Rae here is one of the best ways I know Judi would like to be remembered, because both Judi and Rae (and their friend the late Justin Dart) did so much to build bridges to the cross disability movement.

    Whenever I mentioned Rae to Judi, was the main time I found Judi close to tears, or crying instantly. Judi so loved Rae. Before Rae died, Rae told me she felt her legacy was the historic National Council on Disability report on the rights of people labeled with psychiatric disabilities. By coincidence, this Wednesday is the 10th anniversary of that report.

    Judi.... Rae.... Justin... and everyone influenced by them... lead on, lead on!

    MAD PRIDE, JUDI, MAD PRIDE!

    In support, and love for all the many people who admired and loved Judi,

    David W. Oaks, Executive Director
    MindFreedom International

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  7. I was sorry to hear of Judi C's passing away. I met her only once, when she came to speak to members of the peer support agency in Manchester, NH, o/a 1996 or 1997. Her book and other writings were among the influences that led me to become involved in peer support and the consumer/survivor advocacy movement in NH. Her legacy to those resisting psychiatric oppression and abuse is a remarkable one.

    My thoughts and prayers are with all of you during this difficult time.

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  8. I appreciated Judi's point of view as a hospice patient. This blog has been helpful in allowing me to see things from my patients' perspectives. You are all in my thoughts and prayers.

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  9. Many thanks to Judi for giving voice to the "hospice patient" as she had noted so many times goes unheard in the larger conversation about how to care for people near the end of life. I have a deep appreciation for her most recent and past activism.

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  10. I am sad that Judi is gone, but I am glad that her suffering is over. I hope Marty is doing well and has a good support system to help him through this difficult time.

    RIP, Judi.

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  11. I think a book should be made from this blog so it can reach another audience. This blog has been so valuable to so many. Such a book would be a great continuation of Judi's legacy.
    Love, Hopey in Iceland

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  12. I never met Judi but I am a psychiatric survivor, and appreciate so much all the work she has done to help people like me. I learned so much from this blog too, I have been reading it since right after she started it, and I felt like I knew Judi, and I have lost a friend. She's a very brave person, practical, and smart, and caring, and I was so glad to hear that Judi passed in a quiet and peaceful way. Thank you Judi for all that you have done, and for enriching my life, too. Love to all

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  13. I first met Judi in 1980 when the Portland Coalition for the Psychiatrically Labelled conducted our first march and protest against the treatment of persons with mental illness at the ER at Maine Medical Center. I called her in Boston to ask for her support, and she immediately agreed to come up to Portland to join our march. With her friendship and support the Portland Coalition became a strong force for human rights in Maine for many years. Goodbye, Judi, and thanks, with love from Sally Clay

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  14. On Our Own, one of the first books I read and then later met Judi. To appreciate and understand our stories while searching for the common thread that is woven througout the gift of life, empowers one to realize the idea of choice in our decision making. Thank you for having witnessed and the outlook to leave a story with richer friends.

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  15. It was an honor to know Judi a bit. She was one of the people I admired the most in the whole world. She was always a straight thinker and completely consistent in advocating for the rights of those labeled with mental illness. Whenever people strayed, she brought us back.

    She did this all with complete class, in a nice way, but also with a stern determination made of tempered steel.

    Judi brought her same amazing character to her process of dying where she used the occasion of her inevitable death as a teaching tool. How extraordinary is that?

    I will always look to Judi for guidance because the way she conducted her life is a beacon for us all to follow.

    Marty, I hope you are okay. My experience is that as much as Judi's death was expected and you may have felt it would be a relief to see her suffering end, that it is still very hard for her to be gone. It is even for me, and I was way peripheral to her life. So, it is okay--even good-- to grief and please let me know how I might help.

    Love, Jim

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  16. I want to weigh in on behalf of all of Judi’s friends at the Human Services Research Institute. She has served on our Board of Directors for many years and has enriched our conversations with her wisdom and always independent voice. Judi has been a friend and colleague of many of us for more than 30 years. We remember her spirited advocacy for people with mental illness as founder of the Mental Patients Liberation Front, her establishment of the Ruby Rogers Drop In Center (a consumer run center whose first home was in our building), her work internationally with like minded advocates who benefited from Judi’s enthusiasm and knowledge, and most of all her energy, indomitable spirit and the love she gave so freely to her family and wide circle of friends. It is hard to imagine our work without her but she touched so many people during her life who are – because of Judi – prepared to carry on what she started. Thank you Judi.

    Val Bradley
    President
    Human Services Research Institute

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  17. I first encountered "On Our Own" a little over two years ago. I am a graduate student and I ran across a reference to the book in another source I was reading. I was writing a paper on the neurodiversity movement and doing research on earlier "mad pride" or "psychiatric patient liberation" type movements as background. I thought "On Our Own" was one of the most amazing things I'd read in a long time. It just gave me such a sense of hope and empowerment to see that people really had succeeded in making real and lasting changes which focused on what they needed, wanted and found helpful rather than on what was easiest for those around them or on what mainstream society saw as "acceptable." I felt like maybe I really could actually do something to help open society up to a much wider range of feelings, experiences, abilities, expressions, etc. and by doing so help make "the world" into a place in which it might actually be possible for me to live- something i was very much doubting was possible at the time.
    That book influenced me in all kinds of ways. Now I am teaching a course on Women and Madness to undergrads. We read sections of On Our Own (we are reading them this week actually) and the students are always quite intrigued. Over the course of the class, we talk alot about why rigid conceptions of normalcy are so harmful, gender roles and "mental illness" and all kinds of things and the students usually seem to feel they have learned a great deal.
    I'm also just beginning the process of trying to bring about some changes at a county mental health hospital i ended up at last spring. i have very little idea how to do this but the changes are desperately needed so i'm going to at least try!
    Both the class and the attempt to try and bring about some local change are pretty much direct results of the encouragment I got from "On Our Own" and a few other books like it. This was a long winded entry but I guess I really just wanted to say thank you to Judi Chamberlin for all her work and share how much of a difference that work made in my life.

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  18. It is hard for me to write about Judi. She was my friend for 33 years, and an inspirational leader for our movement. I have lost a friend, but the leader is one of those unique people who effected such enormous social change in her lifetime that she will always live on.

    Judi's work has influenced so many people that she truly can't die. She lives on in the movement that she helped create. She lives on in the thousands of consumer/survivor groups, advocates, peer counselors, consumer/providers that are here because of her pioneering work.

    At Alternatives in Omaha, I believe that she knew this as she looked out at the younger advocates in the room. She said that she knew now. looking out at the room, that the movement was in good hands and would be carried on. The movement that she was so pivotal in creating would live on.

    My love and support to Julie and Marty and all her close friends and family.

    Sally Zinman

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  19. I admire Judi for her passion and her dedication with this blog. I am sure she has helped more people with COPD than she realized with this blog. I had found it through a link on a COPD forum many months ago and have been a regular since then. My deepest condolences to the family. It is never easy to let go of a loved one.

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  20. The roots of the movement, as I recall them, can be attributed to Judi and many others who have come, gone, and are here to stay. Those who are here now, I hope will carry on Judi's work with the dignity she displayed at every turn.

    I was in awe when I heard Judi's voice on the BU-sponsored national conference calls in the late 1980's. She chaired these monthly meetings with legions of activist partners on the line, all there to organize and share. I was 19 when I first heard Judi's voice. I was speechless and in awe at everyone who networked this way (pre-email and cellphone). Judi had a delicate iron fist, actually it probably was wrapped in a satin glove.

    I bought her book and have one of the original edition with pen and pencil emphasizing a thinking I had never heard before then. I was recently incarcerated and the book symbolized a dove soaring to heights of freedom. That was what Judi was to me when I was a teenager.

    Years later, I had the privilege to serve on committees and planning groups with Judi. She used to knit at some of those meetings. One would think she might get lost on a row of pearling but no - the indomitable Judi would peer over a small blanket or a sweater and stop the meeting with a point or perspective no one else had thought about. She might go on knitting, but you'd know that Judi was very much in her groove.

    Judi loved the opal gem. When I would see her, she would have another to show and discuss with me. I admired her love for a gem and equal love for people.

    Judi will be missed, to be sure, but I hope these expressions propel us to what is right and true for ALL people. Judi was a fierce advocate for this and I am grateful for the good she emulated. She almost made it easy.

    With love for Judi's guiding light and condolences to her loved ones.

    Laura Van Tosh
    Oregon

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  21. Hi Julie Hi Marty,

    Very sad that Judi has died, glad she went so peacefully.
    You must both be devasted she is gone.
    Had hoped to see her todays post.
    Getting an email from her always made my day.
    I am so glad I found her blog.
    It was very easy to love and appreciate her even for me just via her blog.
    Missing her, I shall think and talk about her and keep her memory alive.
    Love,
    Herrad

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  22. Dear Marty and Julie and all others there with Judi and all over the world.

    I am so sorry for your loss and at the same time I am glad that this is finally over. I know that Judi did not want to have the trip go on forever under the difficult circumstances. Despite the long journey, she was very brave and offered more of herself than most others could manage to do, right to the end of her days.
    Please know that her contribution to life was a very worthwhile one, though I am sure I don’t have to tell any of you that.
    I am glad too that she was able to enjoy eating yummy things for so long! I will keep a couple of those good recipes she sent to me and think of her every time I eat them though, as yet, I have not set a turkey on fire.

    Though we did not talk (e-mail) often, her presence on the web made a difference to me as she was one of the first people I discovered who had felt the effects of similar psychiatric experiences. I will miss her presence here.

    Please take good care of yourselves and know that you did a good job by getting though this with her and I know she appreciated all the support she got.

    Peace
    Pat

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  23. A virtual memorial has just been set up to honor Judi. In case anyone also wishes to post there, the link is:

    http://www.judi-chamberlin.virtualmemorials.com/

    Rest in peace, dear Judi. You will live on in our hearts forever.

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  24. Thank you for Mad Pride and for everything you have contributed.

    Goodbye Judi.

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  25. Many blessings to you for everything you have given to this world. Rest easy now Judi.

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  26. Judi
    you are and forever will be an inspiration. God bless you. Rest in peace beautiful one and my love and prayers go to your loved ones.
    Sami

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  27. This blog entry is included in the February 2010 edition of Palliative Care Grand Rounds, hosted this month by the Alive Hospice Blog.

    Link: http://bit.ly/cjhX0P

    We also included a link to Judi's memorial site. Our deepest condolences! Judi will be greatly missed. She touched so many lives.

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  28. My wife followed Judi's blog for a long time. She was suffering with cancer also and many of Judi's comments meant a great deal to her, as their views were definitely similar. She passed away Jan. 8th of this year and I know she would have been, as I am, very sorry to hear the news. I can only say my prayers are with you Marty and all her other supporters and wish you all well. Bill McAdams

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  29. Blog are good with marking of every subject related to the article.Good format of this blog and Thanks for the such a fantastic blog.

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  30. Thanks a mill for that post.Thanks for sharing. What a great article. thanks !! very helpful post! Nice writing bub. Thanks a mill. Keep up the good work.

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  31. In keeping with her wishes and instructions, Judi’s body will be cremated in the next few days and we will decide later what will happen to her ashes.

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  32. Awh, the story's really sad but I admire the initiative to keep on helping people.

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  33. Judi has no doubt contributed and helped a lot of people in her own special way. She had given more to life than most of us had.
    Condolences to her family and love ones. And rest in peace Judi.

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