On July 7, Jamel Dunn, a disabled man, drowned in a lake in Florida. His death was captured on cellphone video by a group of teenagers who laughed as they recorded his last moments. They did nothing to help him, nor did they even call 911 so someone else could. They simply mocked him and then posted the evidence of his death on the internet. This chilling story is a reminder to disabled people everywhere of the sad fact that the world does not yet fully value our lives.
The continued effort to repeal the Affordable Care Act is but another, less overt example. Its proponents pretend that repealing the ACA won’t cause people to die, but this has been refuted with hard numbers — each representing an actual human life — and a great many of those are people with disabilities. Cutting Medicaid could essentially make it more attractive for people to choose physician-assisted suicide than to live in a society that doesn’t value disabled bodies. This is an unacceptable future. But we have miles to go before we convince you all that our lives are worth living.
Over and over throughout my life, I’ve heard some version of the following statement: If I ever have to be in a wheelchair (or become blind, etc.) and can’t take care of myself, I think I’m entitled to die. What does that say about society and the smallness of our imaginations about what’s possible for people with disabilities? And what does it reveal about what we’re projecting onto our citizens with disabilities?
People who use wheelchairs, seeing-eye dogs and colostemy bags may have maladies that you fear, but we do not want to be pitied. We are actually a fierce, bold people who, to quote Dr. Paul Longmore, have said, “Enough is enough.” Not only did we fight to pass the Americans with Disabilities Act 27 years ago, making society more accessible for everyone, we are currently changing the tenor of the health care debate. We’ve infused it with some humanity as many brave disabled citizens are literally putting their lives on the line in protests every day so that someday when you get sick and you grow old, you can rest assured that there will be a safety net. A safety net, after all, is not a handout to “useless eaters,” as Adolf Hitler famously called us. It is an important part of a humane society which can empower people with disabilities to contribute, go to work, raise families and to pursue that age-old American dream of life, liberty and the pursuit of happiness.
We need to start valuing every human life, not simply giving lip service to that ideal. But a bill that does not support Planned Parenthood, and at the very same time denies support to families who give birth to children with disabilities, is not a health care system that’s ever going to allow such a family to thrive, nor one that allows people choices about how and where to spend their lives. No child says to herself, “When I grow up, I wanna live in a nursing home!” We deserve to live in our communities, and many of us simply require supports and services in order to do so.
A friend of mine, Stacey Milbern, was recently featured in “The Atlantic” magazine on the real impacts of repealing the ACA. A video shows her attendant helping her get ready to go to her job at Wells Fargo, combing her hair and helping her get dressed for work. The truth is, it was the everydayness of the way they depicted Stacey’s life that choked me up. Because, believe it or not, we don’t want to be your inspiration. We just want to live our lives. Stacey’s story is an example of the social safety net acting as a trampoline, not a hammock. Disability is a normal part of the human condition. It’s time we faced that.
Jessie Lorenz is executive director of the Independent Living Resource Center San Francisco.