JOAN RINGELHEIM: Why as a kid did you protest telethons? I think most people in the audience who are not disabled and who don’t know anyone in the disabled community think of telethons as benign and probably good things because all this money comes. So what’s wrong with them?
HARRIET MCBRYDE JOHNSON: Well, I actually started protesting the MDA, that’s the Jerry Lewis telethon, when I was a self-employed attorney and felt free. But as a child, I had been made very, very uncomfortable every year by that telethon and the others, which have mostly died out. And the reason was that the telethons made their money by parading children forward as objects of pity. It depicted us as people who needed to be cured, who were not good enough the way we were. And in particular the MDA telethon had the added spin, “cure them, help them before it’s too late. Their lives are ebbing away even as we speak.” And it was a very uncomfortable message and very hard to live a life and be taken seriously as a worker. If you wanted, you know, a car loan, anything, you really couldn’t afford for people to be thinking you were going to die any minute now. And so, you know, as I, I really expected growing up to die a teenager.
JOAN RINGELHEIM: Right.
HARRIET MCBRYDE JOHNSON: I absolutely expected that, and when it didn’t happen to me and it didn’t happen to some of my friends, it did happen to others, but not to all. And I realized that it was possible to live enough youth to do something. I really felt it was important to let people know that; that the telethon message was not only discomforting, not only insulting, but on many levels it was false.
Harriet McBryde Johnson describes why she protested telethons.