Harriet McBryde Johnson

2008-07-14 by

Last month, Harriet McBryde Johnson, the celebrated American disabled rights activist and lawyer died suddenly at the age of 50. I met her when I lived in Charleston, South Carolina, in 2003 whilst at the apex of her fame after the New York Times published her Unspeakable Conversations article opposing Eugenics. Her death has been a bit of a shock to me, especially as I recall my own life at the time and the circumstances around our meeting.

In February 2003, my aunt-in-law, Eileen invited us to dinner at the beautiful plantation house she shared with her partner Meta, in the marshland countryside surrounding the romantic City of Charleston, where my husband and I used to live at the time.

As we were chatting away in the kitchen, talking about new jobs and our new life in the Deep South of the United States, Eileen left the room for a moment to come back, a few minutes later, with a magazine in her hand. It was the New York Times magazine. She gave it to me and she said ‘I know you’re not working in Disability anymore but I wondered what you thought about this. She’s a lawyer from Charleston’.

I soon found myself devouring the article with a passion I hadn’t felt in a long time. She was a lawyer whose spinal muscular atrophy left her extremely thin and physically quite weak. Yet her spirit and writing and wittiness had none of the muscular weakness caused by her condition: she took so much risk in confronting herself and Dr Peter Singer, the professor of bioethics at Princeton University, that I was flabbergasted.

At the time I had reached ‘Disability Issues Burnout’, as I called it then, as after years of working in this field, first in London in the UK, then in San Francisco, California, then Bologna, in my home country, Italy – I just simply could not find the motivation to work around disability issues anymore.

After we left Italy to move back to the United States, I had tried everything to find a job in Charleston. It proved very difficult. Both my husband and I had been frustratingly looking for work for six months whilst our savings dried up, our credit card maxed out and our bills mounted and our desperation grew. Eventually we both found a job, mine as a researcher in a downtown-based charity ‘From Darkness To Light which advocated for the prevention of child sexual abuse.

Whilst I would have taken any job that came my way at the time, I was feeling relieved initially as this job was based in a well known organization, with a charismatic boss I admired hugely and finally doing something different from disability advocacy from which I felt the desperate need for a break.

However, as I read through the article I felt overcome by so many emotions: my love for Disability issues started stirring and kicking alive again. My gut wrestled with feelings of anger as I read the quotes from Professor Singer, the villain of the article. For example Singer believes that: “To have a child with Down syndrome is to have a very different experience from having a normal child. It can still be a warm and loving experience, but we must have lowered expectations of our child’s ability. We cannot expect a child with Down syndrome to play the guitar, to develop an appreciation of science fiction, to learn a foreign language, to chat with us about the latest Woody Allen movie, or to be a respectable athlete, basketballer, or tennis player.”

And there I was, reading this wonderful article written by this most amazing disability advocate, who Singer himself probably thought she was not suppose to be able to read, study, enjoy writing, practice the law or not even enjoy life.

I remember about my little sister, Annamaria, who was left with Cerebral Palsy after a doctor’s late diagnosis of Kernicterus at birth: when she died of pneumonia two years later everyone had told me how much better off she was now that she was dead. I was almost four years old at the time. I was so angry she was not with me anymore and felt she was not better off in ‘Paradise’: she should have been with me!

I looked at Harriet McBryde Johson’s picture and thought ‘yes OK, someone wipes her bum, and gives her a bath, and puts her to bed, and gets her up in the morning… probably I would have ended up doing that to my sister’. Yet, I could not help feeling that my sister, in spite of her palsy, was a very bright and happy child when she was alive and she too could have been like McBryde Johnson. Writing brilliant pieces of prose, a sparkly light shining through the darkness brought by thinkers such as Singer and the superficiality of our Western culture.

That article in a way changed my professional life. When I went back to work, I suddenly started focusing, as a researcher, about all the statistics around the sexual abuse of disabled children, which unfortunately is much more rampant than the abuse of non-disabled children. I developed disability-related policies for the charity and I proposed that all the nation-wide adverts for the charity to be broadcast with subtitles.

I joined the local disabled organization and through them I was actually very lucky to meet Harriet McBryde Johnson in person, a tiny woman, with such quiet steely determination to further the cause of civil disability rights that she took my breath away as she spoke about her experience with Singer yet dismissed all the sensationalism around her.

In my opinion she proved people like Peter Singer so wrong, I ask myself how can they not be embarrassed about their eugenics – I can’t quite fathom how they are still publishing their ideas.

But she proved ME so wrong: for being tired of ‘Disability’, for believing too, for a while, that my sister was better off dead. But their both their deaths were not in vain, and I hope that in the future I can keep my health and my motivation to keep writing about the uncoolest subject of all: disability. Thank you Harriet for all you’ve done: may your legacy last and grow.

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