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For the latest news out of Charleston about the 18th annual protest of the Jerry Lewis MDA Telethon, organized in Harriet’s honor by her friends, colleagues, and supporters, click on over to


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Like Mike [Ervin, who spoke before me], I first met Harriet organized as a result of organizing a protest against the Jerry Lewis Telethon. What Mike didn’t mention was that the Muscular Dystrophy Association, sponsor of the Telethon, actually published both Mike’s and my home addresses in their national magazine, encouraging people to send us hate mail. And people did. But amidst all the angry letters, accusing me of ingratitude and malice, I also received a kind of love letter, from Harriet. She expressed solidarity, and she vowed to join the struggle against this annual assault on our dignity. Since that time, Harriet was the most consistent and outspoken of all the telethon protesters. I know many of you joined in her yearly efforts. I managed to put together a protest most Labor Days. Some years I didn’t, and Harriet forgave me for that.

That connection was the genesis of a deep friendship. I first met Harriet in the flesh in 1996, when I came here to present a workshop. Always the proud Charlestonian, Harriet promised me a tour during my visit. But I made the mistake of not bringing my wheelchair battery charger, and so by the time I had a free day, my chair was virtually dead. Harriet was pretty exasperated with me! But came up with a solution. She managed to finagle a paratransit ride around town, and since the van’s availability conflicted with her work schedule, Harriet asked her lovely mother to ride along as my local tour guide. But you can bet that when I came to Charleston again, last October, I had a fully charged chair! and finally got my Harriet-led tour.

Harriet was my colleague and comrade and confidante. We talked about so many things. On the phone, and through e-mail, we shared stories of our daily lives, our hopes and goals and fears, our frustrations and our pleasures. We discussed and debated many issues, personal and political …. and most issues were in fact both personal and political. We both, because of our disabilities, need daily personal assistance. That was one of the things we talked about a lot — the different ways that we got those needs met, in the context of our different living arrangements, our different strategies. We talked about what it was like to depend on family members or friends for help, and about the challenges of hiring attendants, and about Medicaid attendant care policies in Colorado and in South Carolina. These were some of the best conversations of my life.

In her article “Unspeakable Conversations,” Harriet called me her “beloved movement sister.” When that article was reprinted in a German magazine, that phrase was translated as “herzenshwester,” which literally means “heart sister.” From then on, we called each other “herzenshwester,” with great affection.

I’m here to say “Goodbye” to my herzenshwester.

In the van driving down from Atlanta yesterday, we were talking about a lot of current disability rights issues, including this new movie, Tropic Thunder, which gets some cheap laughs with repeated use of the word “retarded.” We were discussing how best to respond to the insulting language in this movie. Someone said, “What would Harriet say about this?” I have a feeling this question will be asked again and again in the years to come. Because of Harriet’s keen analysis, her sharp understanding of media images, we’ll probably ask that question often: “What would Harriet say?”

I hope Harriet’s legacy will go even further than that. I hope we’ll all fight as fiercely and intelligently as she did for the causes that matter.

Thank you all.

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The following message comes from Charleston, from Harriet’s good friend John Polito:


Dear Friends of Harriet,

We now have in hand a protest permit for next Monday from 10-12:30 at the intersection of King & Market (and Meeting & Market if we have enough). It clearly won’t be the same without Harriet but her concerns remain as valid this year as last….

The protest will be followed, at 12:30 p.m., by lunch at the Old Town Grill. …

John R. Polito

1325 Pherigo Street

Mount Pleasant, SC 29464

(843) 849-9721



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Harriet at book signing in Charlotte, NC. Sept. 2006

Harriet at book signing in Charlotte, NC. Sept. 2006.

Photo courtesy of Norma Mangum.

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People who wish to honor Harriet McBryde Johnson may make a memorial gift in her name to a scholarship fund at the University of South Carolina School of Law.
Contributions are being accepted now. Checks should be made payable to “USC Educational Foundation,” and the words “In Honor of Harriet McBryde Johnson” should be written in the memo line.
Mail to:
Office of Alumni and Development USC School of Law
701 S. Main Strreet Suite 202
Columbia, SC 29208
Please forward this information to appropriate parties.

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Word has come from Harriet Johnson’s family that they are planning to hold a memorial/celebration of Harriet’s life on Sunday, August 17, at 2:00 p.m., somewhere in Charleston.

They are also planning to establish a scholarship fund in Harriet’s name at the University of South Carolina Law School. People may choose to make contributions in memory of Harriet.

I’m told that details about both of the above will follow soon… I’ll post any information I receive. For now, this is all I know.

Laura Hershey

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Receiving the Jean Bissell Award, 2005

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Appreciative audience at Ryerson, May 2007

Photo by Tim Wong-Ward, submitted by Catherine Frazee.

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Harriet reading at Ryerson University in Toronto, Canada, May 2007

Photo by Tim Wong-Ward, submitted by Catherine Frazee.

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Terri O’Hare

I have never cried like this over the loss of a woman I didn’t get to meet.

Three things, with my heart aching. (This can’t be!)

1. I had emailed Harriet the 23rd of May asking for her opinion of a trend I’d noticed, of disability/gimps/crips in the media-everywhere lately. A ‘Disability Zeitgeist’ so to speak, I was going to present on this in a conference. She replied in a typical, eye and mind opening way:

I actually give quite a lot of credit to two people who continued with
very responsible jobs with Parkinson’s: first, Janet Reno, then, Pope John
Paul II.

Both of the strong and controversial characters were in positions to decide
for themselves to continue working. Once they made that decision, they had
a host of formal structural supporters in line to validate it. It was the Read the rest of this entry »

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William Loughborough

At the kickoff meeting of the MediaTalk at a memorable meeting called the “May Media Meeting” I came into the Disability Rights Movement (DRM) because of a glance from Harriet and our subsequent connection was the kind of profound that left me crying uncontrollably on the morning I read of on the list of her passing.

At the “Disability Summit” in Charleston we communed closely and continued our emailing and list-responding in ways that made it clear just how far things like this site and all the blogs/wikis/sites that have tied us into a family have changed things for this community.

She was the age of my children and my idol/inspiration. Her memory/writing are burned in my soul/heart.

I won’t “miss” her because she’s tattooed on my brain.


From Remembering Harriet, 2008/06/04 at 11:38 PM

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Aaron David Frishberg

I am proud to say that Harriet had made me a friend, though gawd knows that is no rarity, because Harriet was someone who came to know people easily, and embraced our common humanity. Really, though, I must have come in some special category, because I learned of Harriet’s death from Susan Baum.
If you read Too Late to Die Young, you will remember that there is a character named Susan, and that Harriet matter-of-factly told us that she does what Susan tells her to, because she knows it will be right. When I returned a call from Harriet’s office on Wednesday afternoon, June 4, it was Susan who spoke with me, and explained that calls were being placed so we wouldn’t learn of Harriet’s death by reading about it in the paper, or some such. And when I asked, she confirmed that, yes, she was that Susan. Susan told me that Harriet had worked a full day on June 3, and then rolled home, to die before the next day. And of course, that is the death she would have Read the rest of this entry »

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Honored by the NAACP

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Visiting Barry Corbet on Lookout Mountain

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Harriet at Barry Corbet's memorial service, May 22, 2005

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Harriet at the Tattered Cover in Denver

As part of a book tour to promote Too Late to Die Young: Nearly True Tales from a Life, Harriet read at the Tattered Cover Bookstore in Lower Downtown Denver on May 23, 2005.

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Convivial Group

Celebrating friendship in October 2007 at a Charleston Chinese restaurant. Front row: Robin Stephens, Harriet McBryde Johnson, Laura Hershey. Back row: John Polito, Gilbert Smith, Mallorie Merboth.

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2005 Telethon Protest in Charleston

Every Labor Day weekend, Harriet took to the streets of Charleston to protest and educate against the Jerry Lewis MDA Telethon. Here she is in September 2005.

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I can only imagine what Harriet would have to say about this —


“Jerry Lewis and the Muscular Dystrophy Association are sorry to hear about the passing of Ms. Johnson, an accomplished woman and an advocate for the disabled community. We offer her family our sincere condolences,” said Roxan Triolo Olivas, assistant director of public information for the Muscular Dystrophy Association.
Quoted in the Charleston Post-Courier today,

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Harriet McBryde Johnson passed away on June 3, 2008, at the age of 50. She was well-loved by people in many different communities: her beloved hometown of Charleston, South Carolina; the national and global disability rights movement; and her readers far and wide.

Harriet’s death leaves a big hole in the world, but her life had a profound and positive impact that will not end with her death. Those of us who loved her are in pain, but we find comfort in the company of others whom Harriet touched. That’s why we created this website. Here you can share memories, photos, and links to Harriet’s web-published writings.

Thanks to Carrie Lucas for volunteering to design this site.

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