This foggy Friday morning has found me on a Google adventure, looking up the far reaching anti-stigma efforts against mental illness in this country. For just a taste of the breadth of these actions, check out this link to the Anti-Stigma Campaigns of the Substance Abuse and Mental Health Services Association. I’m also re-reading all my disability rights movement history books – trying to find the points of divergence. Why isn’t dementia included in this mammoth anti-stigma effort? It’s mentioned very rarely. What are the historical reasons why these movements separated? And remain separated? The effort in England Changing Minds, includes dementia. But not in the States. Why? The mental illness movement does seem to use a heavy language of recovery…which is not possible in Alzheimer’s. Is it because there are no survivor stories?
As TimeSlips embarks on a national anti-stigma effort, we’re looking to partner to bridge this divide.
Yesterday I attended a “stigma breaking” event in Los Angeles with people with early stage dementia. Two men, Richard Bozanich and Jay Smith, both diagnosed with a progressive dementing illness, organized the conference in cooperation with the Alzheimer’s Association.
(see LA Times article, http://www.latimes.com/news/local/la-me-dementia30sep30,1,6773450,full.story?coll=la-headlines-california&ctrack=5&cset=true)
The day was full of stories about living with the challenge of knowing that one has Alzheimer’s disease or a related illness. They spoke of the road to diagnosis, finding the right mix of medications, legal and financial issue, and the importance of relationships. Creativity and spirituality were mentioned over and over. These are not men and women whose heads are in the sand, but rather more relaxed on their shoulders as they shed the things they can no longer do while embracing the things they can.
I wonder if “stigma” is a way we organize relationships to maintain a position of dominance. As professionals or “the well ones” we hold onto the language of “us and them” because we are uncomfortable with the uncertainty of brokenness. Yesterday I found myself celebrating the fact that the professionals in the audience were taking a back seat to the expertise of lived experience.
I also had to acknowledge my own limited enlightenment. On the way to dinner I was speaking with a retired professor from Nebraska who was diagnosed with dementia several years ago. I was telling him about a project I’m working on that supports the goal of the conference, to give voice to people with early memory loss. Innocently, but in retrospect, perhaps patronizingly, I said, “I want to be part of the professional community that supports you.” Jim heard my veiled “us/them” reference and responded: “You know you’re no different than me. It’s just that I already know what’s ahead. Once I had that knowledge, a big burden was lifted. Now I know. You don’t know yet.”
I’m still trying to absorb that truth! And I’m thinking about the paradigm shift that will have to occur in the field of dementia if this group of people with dementia, led by an inspiring, intelligent, and verbal group of men and women are successful in breaking through the stigma.