I’d never heard the phrase before I joined the coalition to fight assisted suicide, but I have heard it often since: “Nothing About Us Without Us.” An announcement from the United Nations about the 2004 International Day of Disabled Persons explains:
The observance of the Day in 2004 will focus on the active involvement of persons with disabilities in the planning of strategies and policies that affect their lives. The motto “Nothing About Us Without Us” relies on this principle of participation, and it has been used by Disabled Peoples Organizations throughout the years as part of the global movement to achieve the full participation and equalization of opportunities for, by and with persons with disabilities.
Five words — the powerfully distilled essence of a vast movement of people tired of being objects of discussion. A message directed equally toward opponents and would-be allies. A call for a radical break from habitual ways of thinking and viewing the world. Once that process begins, there is no “unseeing” it, and one can walk into an event and easily know whether the principle of “Nothing About Us Without Us” is taken to heart.
Last week, I attended a screening of “The Last Campaign of Governor Booth Gardner” at the Unitarian church on Fern Street in West Hartford, accompanied by what was billed as “discussion.” I found out about it by serendipitous accident one day prior while there for reasons that had nothing to do with being a member of their congregation (I’m not) or with FIC. The Former Hemlock Society was much in evidence, but it was not publicized on their Facebook page. Naturally, the greatest stakeholders in this “discussion” were not available on such short notice. I resigned myself to spending a lovely spring evening in this morbid way, not especially thrilled. By the end of the night the feeling was probably mutual.
Our hostess from the church clearly favored the bill. She had gone to the ACLU/C&C lobby day. She said Beth Bye might even stop in. C&C’s Tim Appleton led the “discussion,” and quickly became aware of my presence. This was not like the last one I attended at Yale when the ACLU at least reached out to us, albeit late; his greeting felt less like a cheery hallo than an alert to the entire room that an officer from the rival army was in the house.
Tim offered me the floor when an audience member asked for a summary of objections to assisted suicide, but before even trying there was a burning question I had to ask our hostess: was either a doctor or anybody from Second Thoughts invited? “Well, no,” she replied, “but we did put flyers in the library…” It was the wrong answer, and at least three people in the room knew it. She approached me afterward to explain that she really did understand the concerns of people with disabilities, and that was why she read the bill and chose what she felt was a balanced film. Still, she didn’t exactly leap at my offer to put her directly in touch.
Unfortunately good intentions do not cut it. The theme that connects so many concerns of people with disabilities, from what they’ve told us, is being so systematically excluded from the normalcy and privileges of able-bodied life as to be practically invisible. Monday’s event proved it, if proof were needed. This complaint is not resolved by throwing a bone to the chick from Family Institute who happened to crash the party, and although I gain useful information by going, if my presence provides the faintest illusion of real balance to what is otherwise an utterly stacked deck I’ll have to reconsider.
Not that I expect opposition lobbyists to call us every time they promote their agenda — they’re paid to pass a bill. I get that. I’m more disappointed that the UUC, well known for its overtures to the LGBT community, would exclude people with disabilities. If the former feel second-class in deep blue Connecticut under the administration of Dannel Malloy, where does that leave the latter? Last-class, apparently. I guarantee, that message comes across loud and clear.
“Nothing About Us Without Us”…we have a very long way to go.