NaFaCaMo 12
disability rights are civil rights: Jeneva Burroughs Stone
I promised to introduce and feature one of my favorite writers on the planet, activist, poet and MoFaCa Extraordinaire, Jeneva Burroughs Stone. I’ve known Jeneva since we met online blogging in the early days, and her writing has guided and inspired me for nearly two decades. She’s been a source of unending emotional support despite the miles between us and the constraints of our lives as caregivers. Jeneva has a BA, an MFA, a PhD and has been educated and trained by The Arc of Maryland Partners in Policymaking.You should definitely click over to her website and familiarize yourself with her many articles, essays, poems and books. My personal favorite is Monster, “an exploration in poetry and lyric prose of a mother’s understanding of her own “monstrosity” as she adapts to her son and his disabilities: her wrestling match with the rigors of caregiving, the bias of ableism, and her growing understanding of science.”
Jeneva kindly wrote this piece for me on the fly. I hope that you’ll be as inspired, challenged, provoked and encouraged by it as I. I know I can speak for her to add that we are always open to comments, ideas, insights and questions. Your interest and support is valued and priceless!
Supporting Disabled People Is the Real Way to Support Family Caregivers
written by Jeneva Burroughs Stone
For the most part I ignore National Family Caregivers Month. For one thing, I don’t need another earnest lecture to take better care of myself, or be sure to do something nice for myself, or remind me to take a break. None of that is ever going to be available to me in any meaningful way because the organizations and government agencies and well-meaning individuals who tell me things like that are never going to put their money where their mouths are and ensure that the supports disabled people need to live independent and dignified lives are ever in place.
National Family Caregivers Month is, by and large, an exercise in ableism, which is disability discrimination. Someone decided we should celebrate family caregivers by reminding us caregivers that we are still “normal” even though the people we care for are “not normal.” To me, that is flat-out offensive. The implication is that we “normal” caregivers deserve a break from what the well-meaning others think of as the “tragedy” and “suffering” of disabled people.
My son Rob is an advocate and an artist. He is regularly asked to give presentations in forums on health care and disability. Rob takes art and music classes, attends advocacy events, and socializes with his peers. His life is not tragic! He’s having a great time! People love him and want to be around him.
But, Rob requires high levels of support to live in his community because he is a wheelchair user, relies on assistive technology to communicate, and has complex medical needs. However, he does have the civil right to receive supports to live in his community, rights enshrined at the federal level by the Americans with Disabilities Act (ADA) and the U.S. Supreme Court’s Olmsted Decision. His right to be educated is also a civil right, protected by the Individuals with Disabilities Education Act (IDEA). The problem is, of course, funding.
Many non disabled people do not understand that access to education and community inclusion are federal civil rights for disabled people. An outdated and ill-advised attachment to the phrases “special needs” and “special education” manipulates language to blur the boundaries between charitable accommodations and civil rights.
National Family Caregivers Month exists because nondisabled people want to extend the same misguided charitable compassion they bestow upon disabled people to the caregivers who assist and support disabled people—because it’s easier to extend charity than to join the bruising fight for equality and social justice. Charity can be withdrawn at any point in time, for any reason. Rights must always be respected, and, believe me, getting respect is an uphill battle.
I wouldn’t need the charity of National Family Caregivers Month if all of the people who are concerned about my well-being were actually encouraged to care about my son’s well-being instead. And do something about it. NaFaCaMo is a perfect example of what disability justice folks call “decentering the disabled person” by focusing on the caregiver instead. But the more you all try to decenter my son’s needs, the more I need to ensure that he is, in fact, centered within my family and in the community in which he lives. You all keep trying to shove the oxygen mask on my face, knowing full well there isn’t another oxygen mask for my son available, and that my impulse will be to take that oxygen mask off my face and put it over my son’s instead. Because that’s what loving families do. That’s what you would do if you were in my shoes.
I would be able to take breaks, attend to my own health needs, and pursue my own interests to a greater extent than I do now if there were, for example, real momentum among non disabled people to increase funding for Home and Community-Based Services, which is the Medicaid program that provides the supports my son needs to live in his community, outside an institution. These supports include home health aides and home nurses paid at respectable and dignified wages, durable medical equipment, health care, assistive technology, and other items. Institutional care costs far more than HCBS because on top of one-to-one care and equipment, someone has to be paid to administer the facility, supervise the employees, do the paperwork, stock and inventory the supplies, make the meals, clean the place, do the laundry, and maintain a large and costly building, among dozens of other paid tasks.
If you all were willing to ensure my son and other disabled folks could live with dignity in their communities, I wouldn’t need to grovel for “respite” care. I would be able to coordinate and supervise my son’s care while still having plenty of time for myself. I might even be able to take a nap or go out to dinner with my husband during any month, not just November!
See you tomorrow.
It seems to me that lately I've been aware of more and more people who, finding themselves in situations where they are suddenly educated as to the realities of different types of people in deep and personal ways, admit to their previous ignorance. It is so easy to go about our lives, unaware and unseeing until...we are educated in one way or another. That is what you do, Elizabeth, and so do other caretakers.
You make us care. Now. Do we do anything with that or not? That's the question.
This was very thought-provoking. At first I'm tempted to blame politicians who talk the talk of compassion while simultaneously cutting taxes and social services and other methods of support for people with disabilities and others. But then I wonder what I'M doing to further the cause. Voting in ways that I hope will help, for one thing. But is that enough? And I could extend that same question to so many other important needs and causes.