Nearly 60 people crowded into a hotel meeting room in Louisville in late May -- they'd come from as far away as Hawaii and Nainamo, British Columbia -- to discuss what they saw as a problem in getting decent media coverage of disability rights issues.

For three days we talked.

The disability rights movement isn't viewed as a movement -- not in the same way as other movements. People see us as causing a big cut in their pocketbook.

Once people know I have a disability, they don't see me the same way as before.

Disability is feared; it's shameful; most people who have disabilities don't identify. People are embarrassed about their disabilities.

America wants to believe we're being taken care of.

The question's not framed right: If you ask, "how do they view us?" I say, "I don't think they do." How do people think about the disabled? They don't. Until I became disabled as an adult, I didn't think about it at all. We have a bigger problem than a media problem.

It's the wrong question. We need to get past worrying about how we are seen, because "we" are not the story. Other civil rights movements made progress when they stopped worrying about how they were seen and focused on issues.

But how do we begin? Starting at the bottom with people being killed in nursing homes -- how do we begin to address that with the media? Issues like this simply do not get heard.

The problems:

-- We lack a national voice.

-- We don't have the training; don't know the nuts and bolts of dealing with media.

-- We don't frame our issues in ways that interest reporters and editors.

-- There aren't enough of us in newsrooms.

-- It's a "culture chasm" -- middle-class, able-bodied reporters and editors on one side, activists with visible disabilities on the other.

The Ideas:

We need something like the Brookings Institution, some national group reporters can turn to for information about the movement. A "rolodex of disability." A national media team. We don't always even know who our own national experts are.

Not only are few of us trained in working with media, many of us are shy about approaching reporters, afraid the reporter will get the story wrong or turn an issue into an "inspiring feature." Or that the reporter will simply be uninterested in the disability issue we want to discuss.

Having more disabled reporters in the newsrooms would be good, but too many reporters today who have disabilities don't "identify" -- and seem uninterested in covering disability issues.

There are too few reporters like John Hockenberry, and too few students with disabilities going into journalism. If we don't get reporters that understand our perspectives into newsrooms, we'll never have any impact.

How can we give reporters what they want and can use -- but with the message we want?

We can't always frame our own issues. When national stories come along -- Casey Martin and Wheelchair Barbie -- rather than taking insult, we need to take hold of it and respin it.

The plans:

Don't wait for reporters to come to us. Watch TV, read the news, listen to the radio, every day. Be ready. Call the reporter!

Be quick, consistent, concise and correct. Write op-eds. The Telethon is on Labor Day; it's a good time to talk about labor issues. Don't be afraid to repeat yourself -- they forget what they wrote last year anyway.

We have to have our facts straight and the information as accurate and truthful as possible. We don't have to emphasize or bring up the down side, but if we're asked, we can't skim over it or not tell the truth, or they'll never come back to us again.

We need to form strike teams to be ready when national news breaks. The Supreme Court cases are coming down any day.

The results:

This has been opportunity to not feel so lonely. Those of us who try to work with reporters and editors do feel lonely. We don't realize there are other people doing it -- and that if we connect, we'll be stronger.

Marsha Katz

We need to reinforce one another, if we have some success, however small.

Mark Bogusz

The fact this meeting happened -- and that it's going to continue to happen--is striking.

David Pfeiffer

I can't believe it took us 20 years to do this.

Robin Stephens

I'm at a loss for words.

Bill Bolt

Some of us are radical, some conservative, some in the middle. We've all fought hard fights. Many of us are tired. But being together for two or three days has fired me to keep going and know there are partners around the country.

Laura Hagen

The future:

We need to get beyond one person working in isolation to multiple people working together, and to expand, not too fast so as to overwhelm ourselves, but turn it to one purpose and have the kind of breakthrough we saw in Eyes on the Prize. We see that the press starts paying attention to the black civil rights movement after Birmingham. That really turned the tide. We need to catch the attention of the media and make them wake up.

Diane Coleman

Photos of meeting
The Culture Chasm
Our Message in Soundbites

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