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Alzheimer's Association 14th Annual Public Policy Forum - April 27-30, 2002

Morris Friedell's presentation

I'm honored to be here as a representative of DASN International. Here is our brochure, in which we state: "We are autonomous competent people diagnosed with dementia and their loyal allies. Our purpose is to promote respect and dignity for persons with dementia, provide a forum for the exchange of information, encourage support mechanisms such as local groups, counselling, and Internet linkages, and to advocate for services." Our logo is a winged turtle bearing a forget-me-not in its beak. It signifies that despite our bradyphrenia, or torpid thinking, our spirits can ever soar.

I have long valued support groups. As a social psychologist interested in improving society, and as an individual struggling with various issues such as compulsive overeating, support groups meant a lot to me. Persons who don't measure up to normal standards, who society treats as defective, damaged goods, can feel less alone in support groups, and can work together to challenge society and to change it.

So, when I encountered catastrophe for the first time in my life, in June, 1998 when an MRI revealed I probably had a dementing disease, finding a support group was something I quickly thought of. Because it seemed unlikely there would be anyone in my geographic area who would want to confront dementia with all their remaining spirit and intelligence, I turned to the Internet. I also began to study how rich young persons with brain injuries from motor vehicle accidents, whose memory loss and confusion were far worse than mine, received and benefited from intensive rehabilitation, while people like myself were only given "hospice in slow motion," so to speak. As a sociologist who'd studied prejudice, I knew how easy it was to discriminate on the basis of biology and to claim that biology was destiny.

Internet Alzheimer's support groups were, of course, generally caregiver rather than patient oriented, and rather depressing to persons like myself. I was not interested in incontinence, for example. But in early 1999 I found on the Internet CWPML, Coping with Personal Memory Loss, which Laura Smith, diagnosed with AD and living in rural Montana, had recently organized. Like myself, she had a background of 60s activism, was a support group veteran for her personal issues, and had studied leadership, such as Scott Peck's work on community building. Creating DASN as an incorporated nonprofit combining support and advocacy in its mission was particularly her idea. This happened in August 2000, and she became our first president.

An online network is especially helpful for us pwids (or, persons with dementia) because it enables us to get around our memory and processing difficulties. Written communication in chats or emails lets us reread rather than having to remember, and let's it be OK to think and write slowly. Then, not being embarrassed by slowness and forgetfulness we have better self-esteem, which in turn boosts our cognitive performance.

Our co-secretary, Carole, with vascular dementia, wrote: For me, finding chats was like the arrival of paramedics in the 911 emergency of my life! Through them, over time, I was able to:

1. regain hope
2. restore a feeling of belonging
3. rectify misinformation and find authoritative resources
4. resolve to fight my decline
5 ressurect a sense of purpose and direction
6. redirect my energies to helping others in similar situations.

Preparing this talk, as I am doing, 3 1/2 years after diagnosis, I'm conscious of an increased difficulty in organizing my thoughts. I feel challenged to adapt to this situation, but not withdraw from life. I think of the Serenity Prayer, which has been used so much by support groups: "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." We pwids give each other support in accepting the realities of our situation, but we alsoadvocate for change.

We are part of the disability rights movement, advocating for respect and inclusion, whose slogan is "Nothing about us without us." In pursuit of these values, members from California, Montana, Canada and Australia communicated on the Internet and converged on the Alzheimer's Disease International Conference in New Zealand in October, 2001. We had a DASNI booth and led workshops, and put forward the recommendations in the handout. An ADI working group is now considering them. I want to particularly stress 3b) "ADI should urgently determine the policy basis on which people with dementia can be full partners in the life of the organization including contributing to activities and participating in management and advisory functions."

In February we presented analogous proposals (in the other handout) to U.S. Alzheimer's Association staff.

Why do we do this? Why not just try to be comfortable and as normal as possible? Why not simply spend our days gardening or doing crossword puzzles or telling recycled stories until its time for the nursing home? Some of us see it as a matter of the survival of our personalities. Dementia and a dementia diagnosis are traumatic experiences, and the classic text Trauma and Recovery asserts the value of a "survivor mission" for recovery.

Forty years ago Martin Luther King took his message to Washington. He wrote about the "degenerating sense of nobodiness." his people were afflicted with, and he spoke of collective protest with discipline and dignity as a path to pride. He gave his people a survivor mission.

Martin Luther King said, "I have a dream." I too have a dream. I have a cognitively disabled grandchild who is 9 years old. I have a dream that by the time Amy is grown every organization that serves disabled people will include them as much as possible in their staff and administration. Disabled people will no longer be treated like 19th century women who were put on pedestals of motherhood, but denied the right to vote.

This is a dream I want each of you to think about, because pursuing it is so vital for our self respect. I know there are not easy answers but hard questions: How many of us are qualified, and for how long? But I would very much like to see the Alzheimer's Association have an affirmative action program under the direction of a senior staff member which would recruit pwids to serve on local boards (like, forexample, Jan Philips, speaking in a nearby room) and to hire pwids as paid Internet chat hosts. Here I'm thinking particularly of Mary Lockhart who was diagnosed with Alzheimer's disease around 7 years ago and has done such a splendid job.

I guess the way I'm talking about advocacy right now is by doing advocacy. I used to be a professor, and I suppose it is a kind of Socratic advocacy, where my goal is to leave you troubled by the questions and concerns that trouble me. Then we can work together to find the answers.