I had heard stories about her. She was a troublemaker, it was said, and pushy and conniving. She got herself elected to the student council, a young man told me as we rode an elevator in the building that housed the offices of the campus newspaper, just to hurry along the installation of that very elevator. The council met on the second floor, he explained, and without the elevator the university was left with the choice of either moving the meetings to a wheelchair-accessible location (the council's office was on that floor, too, and that presented a larger problem) or telling her, well, gee, you can't participate on the council to which you were elected.
Elevators don't come cheap, the young man continued, and there had been talk of perhaps demolishing the building at some unspecified point. So isn't that a big waste of money? And wasn't that awfully selfish of her?
It occurred to me then that hers was as good a reason I had ever heard for seeking a student council seat.
The council occasionally took up weighty issues, but besides deciding how student-activities funds were doled out, it wielded no real power, at least not until she came along.
What she did, I learned later, was put the university's Jesuit ethics right in its face. And she paid for it. To the displeasure of most of its other members, the council met on the first floor of another building during her first term. And then, as though she hadn't already inconvenienced them enough, she insisted that she, too, have access to the student government office. She wouldn't settle for some dusted-off corner in another location. That earned her the enmity of a couple of bigwig administrators. The sentiment may have been expressed in politer terms, she told me, but the gist of what she heard about herself was that she was a genuine pain in the ass.
But she managed to win a second term, and an office on the second floor, and an elevator. She had teeth.
I'll admit that before I met her-on that sunny day after Valentine's Day 1996, when she rolled up to the picnic table where I was reading and having a smoke-I thought she had an awfully big chunk of her identity invested in that wheelchair. Too much of it, maybe. Everything written about her, and much of what was said, was about how that Joelle was raising a stink over the lack of access to this or that campus facility.
But I came to know that she would rather be spared having to think about her wheelchair so often. She would rather it not be the one thing that keeps her from doing what all those other people get to do. She would rather not have to go through so much trouble to make that just a little less so.
It's about civil rights, she'll tell you, basic fairness. And as long as the world remains bent on defining her by her wheelchair, don't expect her to just forget about it.
She finds unlikely allies. Cranky old men are often the first to open a door. And a Republican president pushed for and signed the Americans with Disabilities Act. Provided those Republican-appointed judges don't weaken it, the ADA might yet be the big boot.
Joelle took the battle to DC in September, where she joined a couple of thousand others in rallying for passage of MiCASSA, the Medicaid Community-Based Attendant Services and Support Act. Should it become law, MiCASSA would direct more long-term care funding away from nursing homes and other institutions and toward in-home care.
MiCASSA has the support of some fiscal conservatives. They like it because home care is generally less expensive than institutional care.
The big obstacle is the nursing home lobby. About two-thirds of nursing homes are for-profit businesses, and their residents are revenue generators.
The "Free of People" rally followed a "march" of 210 people with disabilities and their support people. They traveled about 140 miles, from the Liberty Bell in Philadelphia to the U.S. Capitol, camping at churches along the route.
While the legislation has the support of some liberals in Congress, largely absent from the roster of MiCASSA supporters, and from disability-rights coalitions in general, are organizations on the left. That would seem counterintuitive. Isn't the left the first to take up civil rights causes?
Not when the issue expands from the right to live in the community to the right to life itself. Not when it collides with issues dear to the hearts of other constituent groups.
"They want to kill us," is how Joelle puts it. That may seem hysterical, until you take a look at the thinking behind what are now routine practices (amniocentesis, for example, followed by terminations of Down Syndrome fetuses) and the trend toward ridding the world of human "defects."
Consider the right-to-die movement. Its proponents say it's a matter of self-determination. It's the right to do with your falling-apart body what you wish, to get out of this life at a time and place of your choosing, and not in a hospital bed, with tubes running into every orifice you born with and a couple of new ones the doctors gave you. But in a world that clearly values some humans over others, why would we think that assisted suicide would not become coercive? The fear among the historically expendable is that the right to die would become the duty to die. It would be encouraged for those who are "burdens" upon the rest of us. And old Dad might well decide that he really ought to check out now, before the medical expenses chew up what he could leave to the grandkids.
Consider the animal-rights movement. Its high priest, Peter Singer, the author of "Animal Liberation," would attach greater inherent value to a healthy cocker spaniel than a severely disabled human. It's about increasing overall happiness, he and his acolytes would tell you. It's about creating a world of reduced suffering and greater potential, for all sentient life. (At least Singer is consistent: In support of selective infanticide, he argues that if we are accepting of aborting "defective" fetuses, we should be no less accepting of terminating those unknowing masses tissue once they're out of the womb. Or those unknowing masses of tissue of any age, once they become sufficiently disabled and their lives no longer measure up.)
But that's presuming that people with disabilities are doomed to unhappy lives, and that presumption only increases the unhappiness. The suffering of the disabled is mostly due to the world's response to disability. There was a time, within living memory, when a disabled family member brought shame upon the household. So the disabled were kept away, in the basement or the attic or at a "home" for the "handicapped," where, when all went according to plan, they died prematurely. If you're over 30 or so, you can remember the days before curb ramps and wheelchair-accessible buses. (And that, old-timer, is why you see so many more people in wheelchairs now than you did back then.) And it was less than 30 years ago that disabled Americans won the right to a public education.
MiCASSA is not a personal matter here at Chateau Brouner. Not yet, anyway. Joelle, with a little help, gets out the door more or less on time and off to work, where she brings in more dough than I do. She's a regular contributor to Mouth magazine, the more strident of the disability-rights publications; she's in some demand at conferences of feminist organizations, where she sometimes makes her sisters squirm in their seats; and she is emerging as a cutting-edge figure in the disability-rights world. Yes, she is doing us proud.
We do fine. We are both employed and we have health insurance. We have an aged van that gulps gasoline but it accommodates both her power and manual wheelchairs, as well as a plywood ramp that's good for spanning two or three stairs.
But I have 18 years on her, and that leaves us concerned for what will happen at some inevitable point. Will either or both of us end up in a nursing home?
I hadn't given it much thought, but she certainly had. Finding herself in a long-term care lockup is neither an unlikely nor a necessarily distant prospect for Joelle, because that is where we typically put people like her when their families are either unable or unwilling to help.
Like the rest of us, she would choose to grow old in familiar surroundings, to go to bed when she wants to and wake up when she wants to and have lunch when she wants to. She would choose the company she keeps.
But that's not life in the institution. That world is all about service-delivery models and living on the staff's schedule. It's about being repeatedly told what's best for you, perhaps by a person less than half your age.
Nursing homes and other long-term care facilities are jails for the old and disabled, Joelle told me quite some time ago. I thought she was being a bit dramatic then, but it's no exaggeration that hundreds of thousands if not millions of people who, with a bit of help could live like the rest of us, are warehoused away in those places.
