My Life as A Very Special Friend

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Name: Laurie McKiernan
Email: lala@waste.org
Date: 30 Oct 2000
Time: 23:38:02

Story

I recently received the registration materials for a conference that I have attended (and often presented at) for the last six years. On the back page of the brochure, under the title "Interested in Helping in a Very Special Way?" ("very" was in italics), was a plea for volunteers for the Accessibility Committee. It included the language "Currently, no one has volunteered to help our friends with special needs at the conference." and "Please consider helping [us] continue to assist those who need it most. It'll warm your heart!"

On my first read through, I was furious. Historically, this conference has been very accessible and welcoming to me and other people with disabilities. ASL interpreters, Braille programs, wheelchair accessible facilities, and a no-scent policy were things I had come to expect. I have led numerous workshops over the years on the topics of ageism, community building, and inclusion of people with disabilities. I served on the board of the organization that sponsors this conference. I was instrumental in recruiting the access coordinators for the 1999 and 2000 conferences (there were never enough people to form a committee).

And this is where I came to realize that paternalism and objectification are major barriers to access for people with disabilities. The people who volunteered to be the access coordinators (good friends and allies with an understanding of social justice and the knowledge that true access benefits everyone) were bullied and belittled from their first meeting: they were denied the budget needed to provide ASL interpreting and other services ("Is there enough demand to justify this expense?"); information they requested appear in the mailings and program about access, especially the no-scent policy (something that everyone attending the conference needs to participate in to make the conference accessible to people with asthma and chemical sensitivities), was lost or removed by the people designing the publicity materials; and their very motivation for volunteering was questioned ("you're just doing this to get the glory for helping the poor disabled people.").

In response to these attitudes, I joined the board of the organization in the hopes of being able to educate people if I was in a position of leadership. I proposed that all members of the board and organizing committee be required to attend an inservice on disability and access. When that failed, I organized (along with the access coordinators) a caucus for people with disabilities, their friends, partners, and allies at last years conference. It was very well attended (more people participated in the caucus than the election for new board members). We drafted a proposal for change and presented it to both the general membership meeting of the organization and the organizing committee for the next conference. In this proposal, we stated that paternalistic attitudes, patronizing language, and myths about people with disabilities were obstructing access to the conference. We challenged them to examine their beliefs and behaviors.

Which brings me back to the registration materials. As much as the paternalistic language angers me, I do need to recognize the progress that has been made. Two years ago, there was no mention of access anywhere in the first version of the registration form. Along side all the "special needs" language was the sentence "[This conference] has a long and respected tradition of assisting those with accessibility issues, and [we] would like to be able to continue in this endeavor." As happy as I am that the history and importance of access at this conference is finally being acknowledged, I am frustrated that the people with disabilities in this community (and there are many) are not seen by the current leadership as active vital members (despite the fact that many of us have served on the board of directors, the conference organizing committee, and/or presented workshops or keynote addresses at the conference). Instead we are "friends" that must be catered to and taken care of. Outsiders.

I am torn about what my response will be this year. My first reaction is to consider them a lost cause and give up, but as angry as I am at the attitudes and behaviors of the current leadership, I have also found many of my greatest friends and allies in this community. As much as I feel rejected, I am reluctant to leave.

As much as I want to declare them hopeless and walk away, I have decided to launch a letter writing campaign asking the people with disabilities, friends, partners and allies within the community to contact the organizers and explain why the language in their plea for volunteers was patronizing and inappropriate. I will write my own letter and hope that the members of the organizing committee take this opportunity to examine the myths they have internalized about people with disabilities. And I will not hold my breath. Most probably, it is time for me to move on, to find another community that can see me for who I am and not as a burden they must accommodate. I find it ironic that paternalism, an attitude that many people with able-bodied privilege believe shows how much they care for others, can be the root of so much loss and grief.

My Life as A Very Special Friend

Story

Last changed: April 20, 2004