By Darma Canter
While we listened to 3 of Disability Network West Michigan – Newaygo staff members talk about their work, I heard some things that were interesting and very encouraging about supporting disability rights in court and independent living. We just got the highlights but I’m open to acknowledging good work.
As the Board and audience were mingling, DNWM staff member Ada Linderman approached me and said, “You’re doing so much harm.” She exhaled and continued, “You’re not the disability community.”
I tried to ease into a conversation but she was moving quickly away. I guess Ada and I disagree about what is more harmful to the disability community: consumers speaking for ourselves and our disabled peers, or non-disabled program professionals (with good intentions) assuming they know what people with disabilities need and taking public dollars to give it to them with or without their consent.
What have I said that Ada thinks is harmful, and to who? I have said that the publicly-funded organization she works for is required to be managed and staffed by people with disabilities and committed to empowering the disabled to be self-advocates directing their own lives. The intention of the funding is to change they way the most significantly disabled live as equal and valued members of our communities. This work is based on self-help with peer support. It didn’t make it up.
How is it harmful for me to ask Disability Network to do their job as defined by the funding legislation? Disability Networks across Michigan have taken the position that they are tax-exempt business entities and don’t have to consider the public’s point of view or listen to the people they are paid to serve. Is their position either legally or morally defensible? If they have a defense, I am willing to hear it.
On the other hand, Ada seems to think the non-disabled are qualified (entitled) to take jobs intended for disabled peers. Is the non-disabled person’s experience equal to the life experience of a person with a disability? How effective can a non-disabled professional be in the role of peer or peer advocate? It is a legitimate question. What harm is done when a non-disabled professional speaks for a disabled person or the disability community?
Navigating life with a disability is hard and some of the lessons learned are painful. Having the power to assert your choice in the face of teachers, doctors, case managers is exhausting and if you defer to any of these professionals against your wishes, it is harder the next time there is a choice. As a disabled person, it is hard to be a self-advocate and the power needed is constantly challenged by people who know what is best for you.
People with disabilities need to see other people with disabilities navigating these dilemmas and the community needs to see people with disabilities in the community being self-directed and making their way as peer professionals leading our Centers for Independent Living.
So what harm does it do when non-disabled professionals speak as experts on the disability experience? It undermines our power individually and as community. It reinforces the stereotype of not-able, not-equally-capable. It supports the ableist culture that is more disabling than any actual disability.