Archive for the “Memories of Harriet” Category

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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On Wednesday, June 4, 2008, I and many other people lost a good friend.  Harriet McBryde Johnson of Charleston, SC died that morning.  Why am I writing this letter now?  July 8, 2008 would have been Harriet’s 51st birthday. 


I am very happy that Harriet was born and lived for almost 51 years!  Some people believe that infants with disabilities should not live.  I strongly disagree with that belief!  Harriet had Muscular Dystrophy and I was born with Cerebral Palsy.  Harriet and I were glad that our parents gave us the opportunity to grow up, to graduate from college, have careers and to become middle-aged women.


Harriet and I met at a camp in Southern Pines, NC in the summer of 1970. She wrote her novel Accidents of Nature about a fictional camp.  Some of the experiences in her book were similar to our experiences.  Harriet and I began a long friendship even though we had different interests.  Harriet liked to draw and to read political books even when she was 13 years old. At camp I liked to ride horses and swim. Harriet drew a picture of the pond at camp while I rode in the canoe.  Even when Harriet was a teenager, she was not affected by peer pressure.  She lived her life her way and she died her way (in her sleep). 


I have often said that I wished that I had one fourth of Harriet’s intelligence.  She was the most intelligent person that I knew and yet she was always interested in my opinions. She made a great impact on my life as well as influencing other people’s lives.  Many people have described Harriet as a blunt but interesting writer, a civil rights lawyer, an advocate for people with disabilities, a rebel, a remarkable woman, etc.  She was all that and much more.  The word that I use to describe Harriet is FRIEND!  We shared our hopes, dreams, disappointments and heartbreaks with each other. I had the privilege of knowing Harriet when she was happy and when she was sad.


Even though Harriet lived in South Carolina and I lived in North Carolina, she and I stayed in touch for almost 38 years. We visited each other a few times.  Before we had computers, Harriet and I would type or write to each other.  In the last one and a half decades we would send each other emails. In reading her letters, emails, published articles and books, I felt like I could see, hear, feel and smell whatever Harriet was describing.  She had a talent with words even as a teenager and she used her writing talent to make the world better in her lifetime and for years to come through her writings.


In the past few years Harriet and I would call each other for our birthdays. This year I will remember Harriet on her birthday and I will always treasure my friendship with Harriet!


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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The first time I saw Harriet, she was staring back at me from the cover of “The New York Times’ Magazine.

It was a colleague who introduced me to Harriet. I was new to working with this man, 30 years my senior, who was trying to figure out who the new girl in the wheelchair was.

“There’s a woman who’s in a wheelchair just like yours on the cover of The New York Times Magazine,” he said.

My interest was piqued. I looked at the cover… and said, “Her wheelchair is nothing like mine.”

Then, I opened the pages. I read about her meeting with Dr. Peter Singer and was amazed at how she could respectfully debate him while respectfully and vehemently disagreeing with his ideology.

At that moment, I learned Harriet was gracious. From that, I realized I should be too… even with people who questioned my very existence.

The second time I saw Harriet, I was surfing the web. I happened across her biography, “Too Late To Die Young.” I couldn’t believe my good fortune in discovering that the woman who’d landed on the cover of The New York Times Magazine had written a book about her life.

I ordered it immediately.

When it arrived in my mailbox, I opened the book immediately. In a matter of hours, I’d absorbed it.

Upon reading the last page, I realized Harriet used her words wisely, and that perhaps, I should too.

The third time I saw Harriet, she was at my old university, speaking at the request of a dear friend who’d managed – somehow – to convince her to pack herself, her gear and her attendant to come see us.

I remember looking at her, feeling far too shy to talk to her. I tried hard to not be too indiscreet as I stared at her sharp cheekbones and keen eyes, the same features that had mesmerized the Times photographer.

That night, she entertained the crowd with her nearly true tales of her life. At that moment, I realized Harriet was real… in every sense of the word. I heard a woman who was complicated, yet a simple Southern gal. A woman who was strong, yet had vulnerabilities. In short, a person who represented the very best we humans have to offer.

The following evening, my friend invited my husband and I, along with a few others for an impromptu dinner with Harriet. I elbowed my way to the dining table to sit next to her, to absorb her wisdom. She didn’t disappoint.

I had one more conversation with her, a few months later. We talked about work, wheelchairs and the differences between Canadians and Americans. How could I have guessed it’d be the last time I’d have an opportunity to speak with her?

Then, the phone call of a few weeks ago. Catherine’s words were simple and blunt.

“Harriet… she’s gone.”

I found it hard – and still do – to believe. So, I re-read the first and last chapters of her memoirs and marveled at her perspective on life… and death.

From that, I learned that I should truly accept that all of us will die one day. That Harriet had lived her life to the absolute fullest. And during that life, she’d forced the able-bodied world to really see us.

I thought of the essays and the speeches, the protests and the activism. At the end, I realized that Harriet’s work will help motivate and dare I say it –- inspire — a new generation of warriors.

She’s taught many people many lessons. I’m fortunate to have been one of them. 

So now, at the end of her life, Harriet has become immortal.


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Dear Harriet,

It is comforting to know that in homes and cottages, workplaces and Internet cafés and yes, institutions too, across this continent and beyond, people like me are wrapping ourselves in your yarns, savoring your words.  We are the crowd that you ran with, Harriet, the crowd that responds to your call, relishes your gifts and tellings. 

Of course we grieve, even as we hear your chidings not to.  You have spelled out the truth of our lives with pulse-quickening precision, settled arguments we have with ourselves and others with an elegance that is firm and warm as a good handshake.  And you have left us hungry for more. 

But you have also brought us — and left us — together.  We are together in that “thrilling variety” you spoke of with such ardour and connection.  Here and now we affirm all that we share — particular decrepitudes, particular politics, particular humour and a particular love for a freedom-fighting luminary we are all proud to claim in some way as friend.

I have marked June 4 in my calendar as Dear Harriet day. You won’t approve the moniker, but I reckon we can agree on the framing — a day committed, in your words, to “a drive for a world that will embrace both the fit and the unfit and hold them so dear that the categories die”. 

My world needs such a marker more than it needs an annual telethon.

Farewell, and thank you, my friend.


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I know many of us cringe at the word “inspiration” but I hope you will forgive me, Harriet, for using this word at this time. I knew of you and your writings and I met you just once at a conference. There are many aspects about you and your work that are very impressive to me as a person with a severe disability; but the two that are most significant to me are, number one, the way you carried yourself with such pride, integrity and sense of self. You truly knew who you were. Every time I feel shamed when I look at my cocked wrist due to cerebral palsy, I try to think of you and think to myself “Be damned to those who have a problem with the angularity of my limbs.”

The second memorable gift that you left me with appears in a passage in the book you wrote, “Too Late To Die Young.” It’s when you were visiting a nursing home and the staff were treating you different than they were the residents because they knew who you were. You indicated that you didn’t want any preference in the order that they took people to the bathroom, that you would just wait like everyone else. Every time I think of this, a bittersweet lump rises in my throat. Thank you for giving a legacy that we can and must use in recounting disability history to all those eager and full of dreams young people with disabilities.

In Friendship,


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When I read with disbelief and shock the news about Harriet, I was sitting at my laptop  in a hotel room in Washington, D.C., far from home in Montana. Tears streamed down my face then, and continue to come everytime I remember something new. 

I am so very grateful for her friendship, the lessons she shared with all of us, her passion and humor and commitment and feistiness and competence, and her incomparable way with a word.

From first acquaintance at the first May Media Meeting in Louisville, through all the Mediatalk posts, periodic emails back and forth, the letters at Christmas, yearly reports about the Labor Day protest, and following her amazing adventures confronting Singer, and becoming published….I have so admired and respected Harriet and held her with such affection and in such esteem.

Wanting to believe in the saying that when one door closes, another opens, I can only hope that as Harriet’s amazing spirit left this plane, it might somehow have sent a spark into young disability rights activists, civil rights activists everywhere, and some of our creative young writers and artists and communicators in the disability community.

She leaves both a rich legacy and a gaping hole. I suspect that the first will fill the second, thus providing some measure of comfort in our grief. The other comforting thought is that Barry is reunited with his “Valentine,” and she with him. That thought alone makes me smile and feel a small sense of peace in the midst of all the tears.

With  a heavy heart,

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I’m a law professor. My field is disability law, and I have been asking my students to read Unspeakable Conversations ever since I first read it myself. It was really exciting to me to learn Harriet would be at a conference at Emory University and I would actually have an opportunity to meet her in person. It got even better, though. The attendant with Harriet on that trip was her sister Beth, and I was attending the conference with my own sister, Pat, who is a well known disability rights advocate. The two sets of sisters ended up having dinner together that night, an evening that remains one of my most indelible memories. Later, I met Harriet again at a book signing, and still later, I was able to bring her to Georgia to deliver the Edith House Lecture (a prestigious law school lecture series) in the spring of 2007. Harriet being Harriet, she insisted she didn’t lecture, she just talked, but the room was packed and she held her audience in thrall. I had one more opportunity to be with her in person, and that was when my husband and I went to Charleston over the Labor Day weekend 2007 and helped with her MDA telethon protest. We visited with Harriet in her lovely, lush office, which seemed to me to be the epitome of Charleston style. Harriet herself was the epitome of Charleston style, for that matter. It is hard to imagine a world without Harriet Johnson. But then, as long as her eloquent writings survive, the world does have her in it. She is immortal in the only way she would have admitted — through the memory of the people who knew her and the new people who will only know her through her writing. My heart goes out to her family. They had her so much longer than they expected to, and that must be a big comfort. She didn’t have a period of prolonged incapacity, which she would have dreaded. She lived a life of adventure and achievement and joy, and her family can take credit for helping to make it possible for Harriet to express her indomitable individuality. RIP Harriet!

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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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Visiting Barry Corbet on Lookout Mountain

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

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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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Harriet, Robin Stephens and Laura Hershey

Charleston, South Carolina, in October 2007

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