Fighting Words

Harriet McBryde Johnson

It's a warm spring day in 2001 on the campus of Charleston College in South Carolina, and a Southern belle has just extended her hand to a distinguished gentleman. It seems that the famous Southern hospitality is at work, until the lady smiles sweetly and says, “Good afternoon, Mr. Singer. I’m here for Not Dead Yet.” Despite the pleasantries, there is no mistaking the meaning – the fight is on!

Peter Singer and Harriet McBryde Johnson are essentially mortal enemies. Singer is an Australian atheist and utilitarian philosopher who gained notoriety for arguing that parents should have the option of euthanizing newborns with disabilities, thereby avoiding the suffering he contends is in store for the parents. According to Singer, the infants aren’t sufficiently cognoscente of their own existence to qualify as full human beings.

Johnson was one of those infants. Not one for labels, she doesn’t know her diagnosis – she asked the doctors not to tell her, and her medical records were destroyed by Hurricane Hugo in 1989. What she does know is that she has a progressive neuromuscular disease that causes atrophy of the muscles.

Among her accomplishments – Johnson is a lawyer, writer and disability activist – she is also the record-holder for the longest protest of Jerry Lewis’s annual muscular dystrophy telethon, showing up each year for the past 17 years with likeminded people to protest what she says is the telethon’s exploitation of those with muscular diseases.

After their introduction on that day in 2001, when Singer visited Charleston as a guest speaker and Johnson showed up to represent Not Dead Yet, a disability rights group that is opposed to euthanasia, Johnson and Singer began a discussion over email. About a year later, Singer invited her to debate him at Princeton University, his home turf. Given that Singer enjoyed a platform at Princeton yearround, Johnson was not inclined to an equal-time debate. Instead, she agreed to two speaking engagements. A key question was whether people like Johnson ought to exist. She chronicled her experience in "Unspeakable Conversations," an article in the February 16, 2003, issue of The New York Times Magazine. The article made Johnson a recognized champion of disability rights to the wider world.

Johnson is concerned that Singer’s proposed legal and policy changes will be taken seriously. She believes society is still struggling with the stigma of having a disability, as well as prejudice, misinformation and a lack of resources that would cause parents to agree with Singer. For Johnson, the only reason many people with disabilities have lives at all is that society didn’t make raising them optional, an opinion that many consider controversial. “Society ganged up on [the parents] to say, ‘You’ve had some bad luck here, but you have to deal with it.’ A lot of things are like that, if you have a choice you can’t deal with it, but if you have to you can,” says Johnson. “The choice model only works if you have good information, resources and equality. When you have choices informed and structured by inequality, it can be a subtle form of genocide.”

Johnson, who is an atheist, was born in 1957, the second of five children, and grew up in Charleston. Her parents expected their children to fight their own battles, a skill that would help Johnson negotiate a world in which disability rights did not yet exist. “This world is very different than the one I was born into. I was excluded from public school and that doesn’t happen now. There was no ADA [Americans with Disabilities Act], there were no curb cuts,” says Johnson. “The first generation of the [disability] movement gave me my law licence because I couldn’t go to law school, there wasn’t one in my hometown, and no school in the South was going to admit a student who couldn’t get in and out of bed at night.”

As someone beholden to the beginnings of the disability movement for her own opportunities, Johnson has seen the voices of a few create massive amounts of positive change in her lifetime. “Just the idea that there is a movement now is thrilling,” she says. “I think one way to look at it, even though we can’t turn out thousands of people for a march, is that a very small number of dedicated people have really done amazing things. [Younger people], I think, expect a lot more, and I wouldn’t have thought anything of what’s already here was possible, so that’s encouraging.”

Though disability rights had always been a part of Johnson’s life, she spent 11 years building a law practice and dabbling in electoral politics before making the movement her main extracurricular activity. “The reason [for getting involved] is really pretty selfish,” she says. “I want to get things fixed so things will be easier. I, in particular, worry about my future because as things stand in my state and my country, it’s really more likely than not that I will be institutionalized before I die, and that’s a very scary idea. Also, less selfishly, I’ve seen it happen to others and it’s just horrifying to me that so many decent people are in places that they don’t want to be and locked up from any opportunity. Even people who aren’t institutionalized, many of them are stuck one way or another.”

Every day in her practice, Johnson sees clients who are “stuck” somehow. She represents them in disability discrimination cases and in fighting for Social Security. Though she says it’s hard sometimes to always be complaining about something, you just never know when a problem will prove easy to solve and when you will have to put up your dukes and fight. “You never know, sometimes all it takes is a conversation, and other times, you had better be prepared for a knock-down drag-out.”

Johnson is currently pushing for an exemption for self-directed services in proposed state licensing requirements and for other law and policy changes to allow people with disabilities more freedom to run their own lives. Though she isn’t afraid to put herself in the line of fire on behalf of the disability community, Johnson realizes that many things prevent people in the community from being involved in the change they want to see. “A big one is luck, economics,” she says. “Lots of people aren’t even in a position to get involved, or find out about it, because they live in such isolated situations. If they live at home, they may have no other contact with anyone except their family, and how does someone like that ever get hooked up? Once you move past that, you have a lot of people who are really struggling with the day-to-day survival issues.”

Then there are some who choose not to participate because they don’t want the stigma of being associated with their own minority. Finding a balance between being out in the world and representing one's own interests associated with one's disability is an issue that even Johnson struggles with daily. “It’s a constant negotiation. I’m the only disabled person in my office. Every holiday season, there’s an issue: Someone wants to have a party in their home, the home is not accessible, is Harriet going to come? Just day to day, there are still a thousand ways that I’m still disconnected. Although, I’m certainly more connected than a lot of people, but there’s always that sense of being a foreigner where you live.”

Even with these ever-present threats to mass mobilization, Johnson believes in the possibility of the disability movement being as effective as the African-American and gay rights movements, but organized in a different way. “To figure out what people can do and really value their contribution is the best way to make it grow,” Johnson maintains. “Chances are, a guy in a suit isn’t going to go to the wall and get arrested, but he can visit a congressman, while the rebel in jeans may have a hard time getting heard by the congressman.”

It would help to see more people involved — Johnson and the rest of the movement need all the voices they can rouse, since the fight for equality is far from over. But, as Johnson steadfastly reminds us, the community has come a long way. For all the faults of the ADA, it has played a big part in raising expectations around the world.

“We expect to be able to go places, we expect to be able to ride the bus,” Johnson says. “Now the exception is to be barred from somewhere, while that once was the universal rule. Now it’s ‘You mean they don’t have a ramp?’ instead of ‘Wow! They have a ramp!’ Yeah, we’re still unemployed. Yeah, we’re still institutionalized. But we do have rights, and people have to deal with us. Now they have to talk to you, and that’s a chance, that’s a chance to do something with your life. Sure, sometimes you have to push back, but at least now you have something to push back with.”

To read “Unspeakable Conversations," visit www.nytimes.com and enter the article name into the search window.

Aaron Broverman is a freelance writer who lives in Toronto.