The Kelso case Thanks, Ragged Edge, for bringing this issue out into the open, and finally focusing on Steven Kelso (March/April). The parent-advocate community is reacting as expected; it's an unavoidable consequence when it's discovered that the perspective of people with disabilities doesn't always mirror the "party-line" of the (mostly non-disabled) advocacy community.
Missed it The mainline press, and many folks in the disability movement, missed it by a very wide margin. Thank goodness for the Edge.
Appalled by it When I first read about the Kelso case in the papers, I was appalled by it. I was even more shocked when I started speaking to friends and discovered that most of them were full of sympathy for the parents. When I said that I couldn't muster up sympathy for a couple who were extremely rich, drove 2 BMWs, and had almost full-time outside help caring for their child, I was told that, not being a parent, I couldn't possibly understand.
Public reaction to this story shows that a distressing number of people don't truly think that disabled people are quite as deserving of basic human rights as the rest of us. I find that despicable.
Christine D. Clemens
Understand rather than condemn I think it ludicrous to imply that Ragged Edge writers Josie Byzek and Dave Hingsburger speak for Steven, just as I think it ludicrous to imply that those who have worked so hard to ensure real lives for our and others' children have put Steven's interests on the back burner because we sought to understand rather than condemn his parents' action.
For most of his life, Steven's parents have spoken for him in the way that most parents speak for their children.From most accounts I have read, they were doing a pretty good job. Now, the court is speaking for Steven. However, I believe it is in Steven's best interest, in the long run, that it once again becomes the people who "threw him away," "who don't love him," or "who committed a hate crime" who speak for Steven for the rest of his childhood.
Steven needs to grow up with his family. If those who purport to speak for him have their way, most likely he will grow up in one of those places our system reserves for those who can't grow up in their family. The places we spend so much time advocating against.
Bill Coffelt, President
The politics of perspective. The articles on the Kelso tragedy in the March/April issue and the reactions to them reflect tensions beneath the surface of relations between disability rights activists and some parents. People with disabilities and parents or family members sometimes see things differently. Disability rights activists can count the ADA among their successes. Parent leaders can legitimately claim credit for P.L. 94-142, or IDEA.
But here's the rub: I doubt whether the ADA would have been passed without the support of parent groups and nondisabled allies, or whether IDEA would have been passed without the support of disability rights activists and non-parent advocates.
If we are ever going to get MiCASSA passed or achieve more fundamental changes in American society, then people who share a commitment to freedom will need to work together. In the vast majority of situations, the interests of parents and people with disabilities coincide. Parents benefit from the right to education, accessible facilities, and the availability of home supports or personal assistance. When parents represent the interests of their disabled sons and daughters, their perspectives carry at least as much weight as anyone else's. In some cases, however, parents act in ways that are contrary to the interests of their children. Any discussion of how a person has been treated must start with the perspective of the person subjected to the treatment and not the feelings, motivations, or hardships of those who treated the person that way.
What the Kelsos did is wrong, and Steven's perspective must be the starting point in any discussion. Disability rights activists know this, and some parents do too. The question raised by the Kelso controversy is not "Who speaks for Steven Kelso?" Claims to speak for another human being are always suspect. The question to be asking is "Who is trying to look at the situation from Steven's perspective?"
The writers in the March/April Edge reflected on what Steven might be feeling. Whether or not they got it right, they tried. In a heated discussion of the Kelsos on an Internet listserv not long ago, I was confronted by parents with the "I'm a parent, you're not" card. At my table, the "I'm a disabled person, you're not" card trumps the "I'm a parent, you're not" card every time.
If I am forced to choose sides and I really do not want to I will side with disability rights activists in the politics of perspective. Parents, family members, allies, and advocates can and sometimes do literally walk away from the world of disability. Disabled people cannot. Many would not abandon the world of disability and the movement, even if they could. It would be like walking away from your child.
Steve Taylor , Director
Did adoption cross their minds? I have a dog I can't control, named Homey. She's huge and energetic and clumsy and plum stoopit. I adopted her a few months ago from a local shelter and soon after found that she has terrible urges to landscape my yard with decorative uprootings and foot-deep holes, pull my fence up by the stakes, run out in traffic, and, when I risk life and limb to bring her back, land all 70 pounds of her big self on my desk.
What's more, she drags me down the driveway when I have her on a leash, nabs whole pizzas off the kitchen counter, jumps on my bed in the middle of the night, chews phone cords through while I'm talking on them. She fished one of my goldfish, the big Aranda I named Hambone, out of the backyard pond and pulled it apart on a rock.
I don't even like Homey any more. (My mom was an obedience trainer, and even she would have given up on this one. I keep trying, but the dog cannot listen, cannot obey.) And boy am I tempted to dump her. We're real near the wilds here, and I often fantasize about it. But I won't. Instead, I have put her up for adoption.
Next weekend the ad will run, and I hope I find her a home among people who want a big old coonhound who can't listen to (my) reason. Otherwise, I'm stuck with her. As is.
Since the Kelso parents had 20 hours a day of services for their kid, and lost the desire to remain his parents when they had to take care of him themselves . . . I mean! Were they too stressed by actually having to feed him? Dress him? Wipe his butt? Get outta here! If they didn't want him any more, did adoption cross their minds?
What the Kelsos did is what any parents do when they dump their kids in institutions: keep control over "the poor thing." They don't cede parental rights. They do walk away, relieved that the burden is off their backs.
This maintaining of parental rights is a white middle-class values thing, I guess: "being responsible." What I learned from Tennessee People First is that every single inmate of state DD institutions had a Do Not Resuscitate order in his or her chart -- placed there by parents and guardians. The message could not be clearer: we don't want him alive.
If anyone calls or contacts me or Freedom Clearinghouse about the Kelsos, I'll tell them that the Ragged Edge "Shame" article is landmark in disability rights publishing. I will tell them that I wish I'd had the wit to ask someone to write about that family-from-hell for Mouth. There is nothing special about our needs. There may, however, be something feloniously special about parents who dump us. I only wish they'dbeen prosecuted to the fullest. I want to see their stinking white uppercrust asses in jail.
Lucy Gwin, Editor
Disgusted by forgiving public Where I live, in Southern Maryland, there was very little press coverage of the incident.I am disgusted and disheartened to learn how forgiving the public has been to the parents of Steven. What the hell is the world coming to? What does the public view Steven as, anyway?
It is bad enough that there are so many misconceptions and barriers people with disabilities have to face. Much of this is because small-minded views get passed down from generation to generation, and children will always look to the parents for examples of how to behave, interact (or fail to) and treat disabled individuals. Imagine the public outcry if two parents abandoned a "normal" child. But abandonment is abandonment, period.
I feel for Steven, and for others like him who are shunned, dumped and pushed aside.There aren't enough reasons under the sun to constitute turning your back on a child. I work for a chapter of The Arc as a recruitment specialist, and I develop employee retention programs. We've got a dedicated and talented staff, but we're losing many people because of low pay and low morale. Some people leave the direct support field because of community pressure -- of being treated as a sub-human because of the work they do. They feel isolated, unappreciated.
I know that feeling; I remember a man asking me a few months ago, "You do this for a living? You work with these people?" The look of genuine incredulity on his face broke my heart. And he's not alone.
We're fighting here in Southern Maryland to increase community and public awareness, and it is not an easy battle.