Monday, April 20, 2009

The founder of The Disability Rag tells its history

An article by Mike Ervin in Independence Today about Mary Johnson, who founded of the seminal disability rights publications, The Disability Rag.

I, too, must thank The Disability Rag for all its excellent information over the years. It is where I first learned about the Society for Disability Studies, which gave me an academic discipline under whose umbrella I could pursue my research interests in media and disability.

In the early 1980s I was fresh out of college, a restless youth eager to enjoy life in the big city. But public transit was not wheelchair accessible; neither was much of the infrastructure Somehow I ended up on the mailing list of The Disability Rag . It was a fiery magazine written by other gimps like me. They wrote about the isolation I felt. They, too, knew how it felt and were ticked off about it like I was. They spelled out the causes of and remedies for our segregation in clear, sharp, political terms. The Disability Rag was bold, brash and inspiring. Like others, it turned me into an activist.

The founder and editor was Mary Johnson of Louisville, Ky. (pictured) But this woman, whose publication articulated the disability experience with unprecedented authenticity, had no disability herself. As a child and young adult, she says, “I really had no interactions to speak of with disabled people other than the typical ones -- you'd see a man in a wheelchair and ask your mom and she'd say, ‘Don't stare' -- things like that.”

The Disability Rag chronicled and fueled the emerging disability rights and independent living movements. The first edition came out in January 1980. It ceased publication in 1996 but started again as the Ragged Edge in January 1997. A Web site,, was launched at the same time. The Web site still exists, but no new content has been added since 2006. The print version of Ragged Edge ceased publication in 2004. The Advocado Press (, which published The Disability Rag and Ragged Edge , still sells a few books written by Johnson and others.

These days, Johnson helps her husband, Robin Garr, operate his food and wine Web sites. “Whether I will get back into disability rights is a big unknown for me now,” she says. “I do still have some things I want to say -- maybe in a book someday -- but that will have to wait for later. Unfortunately, or fortunately, there will always be work to do in writing about disability rights, should I be able to return to that!”

In a recent interview, Johnson discussed the influences in her life, how The Disability Rag came into being and the role it played in shaping the culture.

Independence Today: What occurrences in your life helped shape your political and disability consciousness?

Mary Johnson: I came of age in the 1960s, and so I was attuned to civil rights, women's rights, etc. I went to a small local college and wasn't really an activist in any way. I got a degree in English, worked for a time doing reporting for weekly papers, did some PR work for nonprofits. My involvement in disability rights started when a friend asked me if I'd be willing to serve on the board of a newly formed group. This was in the early 1970s, and as you know, nonprofits often want people with PR backgrounds on their boards. I said OK but didn't really know what I was getting into. The director, a woman with CP, was starting the first "consumer group" of disabled people in Louisville. I got a real education from her. She explained to me that disabled people -- "handicapped adults" was the term used back then -- had a right to transportation, housing, etc. It was like the proverbial light bulb going off,
and I was hooked. I was particularly appalled that nobody seemed aware of any of
this, and since I wanted really to be a journalist -- and hoped someday to land
a good job on a newspaper -- I guess I got into investigating it like a journalist would.

IT : How did this lead to The Rag ?

MJ: Several years later, I was still involved in what we were just starting to call "disability rights" in Louisville. Our group had gotten VISTA (Volunteers in Service to America) volunteers and was doing some community organizing, but it was clear that we weren't reaching enough people. As is even the case now, the big problem was transportation. People couldn't get to organizing meetings! Our VISTAs were really into "consciousness raising" as a concept, so I got the idea of putting out some sort of a publication, and we called it The Disability Rag . It was just local; it was just one 11x17 sheet folded. But people really took to it! After a couple of years we made it bigger, we incorporated an organization -- The Advocado Press -- to publish it. Cass Irvin, one of the incorporators, decided it should be circulated nationally and spearheaded that effort. That effort, which I have to admit I wasn't too interested in, was a big success by the measure of the day. People seemed to want it, and it became popular in activist circles. I think the time was right. It was just at the time of the grass-roots disability rights movement taking off. A couple of years later, ADAPT started and moved to the national stage and The Rag was there to report on all this.

IT: Was it always a financial struggle?

MJ: Yes, it was always. We weren't in it for the money, and nobody on our board was really that good at fundraising. The amazing thing was that we got as much money as we did -- the vast bulk of it from readers who didn't have all that much money. People paid for their subscriptions and answered our pleas for donations. At its height in the late 1980s and early 1990s, it had several paid staff.

IT: And later, in 1999, there was the famous May Media Meeting, at which disability journalists gathered in Louisville. This led to the creation of the Mediatalk listserv, which writers and activists still use today.

MJ: That plan was hatched in early 1998, and the Advocado Press board OK'd it. We announced it in The Rag in the fall of 1998, I think, and we ended up with about 50 participants, as I recall. There was no seed money; everything was paid for by registrations!

Mediatalk was a way to continue what had been started at the May Media Meeting. It started as a Yahoo group. I set it up in the fall of ‘99, I believe. It went great guns for a while, but like many things sort of became more of an information-sharing listserv than an activist organizing site, which is what I think some folks wanted.

IT: What role did The Rag and Ragged Edge play in the disability rights and independent living movements?

MJ: Like many people who are involved in ventures that fuel movements, I really was too busy to think much about The Rag' s "role" in the movement. Looking back from my distance today, I am aware that there was an ongoing tension between activists who wanted us to be more activist and my instincts to be (the voice of) "journalism" -- reporting but not participating actively. I don't know if that was a correct choice or not.

IT: How well do activists understand and successfully use the media today as opposed to back then?

MJ: Of course the media landscape is so different today. Blogs are clearly doing what print media did in the ‘80s and ‘90s in the movement. As always, though, core problems remain. Too few people associate, identify or are aware of even the concept of disability rights, much less paying attention to or understanding issues. My thoughts about the movement and media were really laid out in my 2003 book "Make Them Go Away." I still do not believe that the disability rights movement values or understands the role of the media or is particularly sophisticated in knowing how to use it. I more think this is a problem of lack of interest than lack of skill. I think the movement has always seen its focus on things like getting laws passed and doesn't seem fully aware of how to use mass media to change understanding -- or maybe it just seems to be too big of a job. And perhaps it is too big of a job. Consciousness takes an immense effort to change, and just like our VISTAs believed, what's really needed still is what we used to call consciousness raising.