Harriet McBryde Johnson (1957-2008)

“I am in the first generation to survive to such decrepitude. Because antibiotics were available, we didn't die from the childhood pneumonias that often come with weakened respiratory systems. I guess it is natural enough that most people don't know what to make of us.”

Born in Laurinburg, North Carolina on July 8, 1957, Harriet McBryde Johnson was one of five children born to parents who were college lecturers.  A  sister died of the same progressive neuromuscular condition that she herself experienced.  Thanks initially to the family’s economic security and later to her own professional career, she benefitted from the personal assistance and the power chair that enabled her to participate in American society.  She always knew that she was one of the privileged ones, who could escape what she called the “Disability Gulag”.

From an early age, Johnson realized that she would have a limited life expectancy.  She was an activist by the time she was a teenager at special school, trying to get an abusive teacher fired.  Like thousands of other disabled people, she thought that television charity telethons – such as the annual Jerry Lewis event on American TV – were demeaning and counter-productive.  Later she would describe herself as holding the world endurance record for protesting the Jerry Lewis telethon.  In return, Lewis described activists such as Johnson as the equivalent of Lebanon’s Hezbollah.

Harriet McBryde Johnson earned undergraduate and postgraduate degrees in history and public administration in Charleston.  After graduating from the University of South Carolina Law School in 1985, she set up in private practice as a lawyer, where she specialized in welfare and civil rights claims for poor people with disabilities.  She was also active in the Charleston Democratic Party, first as secretary and then as chair.

Johnson’s intelligence and confidence made her an ideal advocate for disabled people, not just in the courtroom but also in the political arena and through the pages of America’s newspapers.   She also had a wry sense of humour, as another extract from her writing demonstrates:

“It's not that I'm ugly. It's more that most people don't know how to look at me. The sight of me is routinely discombobulating. The power wheelchair is enough to inspire gawking, but that's the least of it. Much more impressive is the impact on my body of more than four decades of a muscle-wasting disease. At this stage of my life, I'm Karen Carpenter thin, flesh mostly vanished, a jumble of bones in a floppy bag of skin.”

Beginning in April 2001, her most famous intervention was a series of encounters with the Princeton philosopher Peter Singer.  A utilitarian, Singer has notoriously challenged the value of life, and suggested that it should be permissible for severely impaired newborns to be killed. In 2002, she debated publicly with Singer, and subsequently published “Unspeakable conversations”, an article in the New York Times, the source of the self-description above.  Johnson pointed out that: “The presence or absence of a disability doesn’t predict quality of life.”  Drawing on her own experience as someone with a neuromuscular impairment, she argued: 

“We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.”  

Singer’s theories may lead him to obnoxious conclusions on the topic of disability, but he is no bigot: on other issues he is very progressive.   He is also of course formidably intelligent.  On the one occasion that I debated with him on radio, I found him a rather cold and intimidating opponent.  By matching him in person and in print, Johnson made a huge impact on all those who heard or read her, enabling millions to access and understand the arguments that the disability rights organization Not Dead Yet was propounding.  In particular, as an atheist Democrat, she helped non-disabled people understand that arguments against assisted suicide and selective abortion came not only from Christian conservatives, but  also from the disability rights community.

Johnson published two books.  The first, a memoir called Too Late to Die Young, was published in 2005 and contains eloquent descriptions of living with personal assistance, of fighting prejudice and of the value of life as a disabled person, what she called “bearing witness to our pleasures”.  In the preface, she wrote:

“For any Charleston lawyer, any Southern lawyer for that matter, storytelling skill comes so close to being a job requirement that maybe it should be tested in the bar exam.  Beyond that, for me, storytelling is a survival tool, a means of getting people to do what I want.”

A novel, Accidents of Nature, about a girl with cerebral palsy who had never known another disabled person until she went to camp, was published in 2006.

When Harriet McBryde Johnson died two years later, aged only 50, the fact that she had obituaries in both the New York Times and the Wall Street Journal demonstrates the impact her life and writing had had on American culture and politics.

Further information

Unspeakable conversations

It’s our story interview 

Georges Couthon (1755-1794)

It was as a footnote in a book by Michel Foucault that I first encountered Georges Couthon, a leading light of the French revolution who had paraplegia. Since then, I have visited the Musee de Carnavalet in Paris several times to see Couthon’s wheelchair, a padded wooden contraption with a handwheel for propulsion, but despite dragging myself up several flights of stairs, it has never been on display. I still cannot work out whether Couthon was barbarous or benign, but the idea that a wheelchair user was at the core of the dramatic political events of the French revolution interests me hugely.

Georges Couthon was born in the Auvergne, son of a lawyer, grandson of a shopkeeper. He also trained as a lawyer, and practised as a barrister in Clermont-Ferrand, where he was noted for the gentleness of his manner and his amiable character as well as for his clear, precise and persuasive language. He gave free legal advice to the poor and supported charitable institutions. He also became a Free Mason.

Although Couthon had suffered from joint problems since his childhood, it was not until 1782 that he progressively lost the use of first one and then his other leg, despite attempting various treatments such as electrotherapy, a milk diet and sulphur baths, . Disability did not stop him marrying in 1787, and he had two children. But for the rest of his life he suffered considerable pain and experiecnced regular health crises which often forced him to stay in bed. His paralysis has never been satisfactorily diagnosed, but may have arisen from an infection of the spinal nerves, or even multiple sclerosis.

In 1791, Couthon became a deputy of the Legislative Assembly. In Paris, he joined the Jacobin club. In the Assembly, he was noted for his eloquence and his democratic ideals. For example, when the King came to the Assembly, Couthon proposed that he be called “King of the French” but neither “Sire” nor “Majesty”.

In 1792, Couthon was elected to the National Convention. At first, he did not take sides in the struggle between the Montagnards and the Girondins. He voted for the death of Louis XVI, and became an associate of Robespierre. When the Girondin faction fell from power, he asked that moderation be used against them in defeat. He then became a member of the Committee of Public Safety.

When in 1793 the city of Lyon rebelled against the new regime, the Committee of Public Safety passed a degree calling for Lyon to be destroyed, to set an example. Couthon was sent to take charge. However, he ensured that while the houses of the rich were pulled down, those of the poor were exempted. Nor was he keen to supervise the mass executions which were demanded. So he requested to be relieved of his commission, and a more brutal leader was sent to replace him. Predictable atrocities followed.

Couthon had returned to Paris, where he became President of the Convention for a few weeks, to be succeeded by the painter Jacques Louis David. From early 1794 he began to use a wheelchair, which had formerly belonged to the Countess of Artois at Versailles. Neither then nor earlier did his disability prevent him carrying out political activity, important missions for the government, and family life.

Couthon helped Robespierre and Saint-Just bring down Danton: it is said that before his execution Danton remarked “If I left my legs to Couthon the Committee of Public Safety might stagger on a bit longer”.

However, less to Couthon’s credit was the Law of 22 Prairial, which, in order to shorten the proceedings of the Revolutionary Tribunal, removed the right of legal defence for people accused of polical opposition to the Revolution,. Couthon argued that a crime against the people was worse than a crime against an individual person, and such “attacks on the existence of a free society” should be treated differently. As a result of this law, tens of thousands were executed during the Terror which followed.

Ironically, it was Couthon himself who was one of the first victims. When Robespierre threatened a new purge of the Convention, his enemies moved against him and his followers before they themselves could be executed. Georges Couthon could have left Paris on a mission to the Auvergne, but he wrote that he wanted either to die or triumph with Robespierre and liberty. During his arrest, he fell down the stairs, and injured his head. Sincere to the last, he said to his enemies: “I am accused of being a conspirator: I wish that you could read into the depths of my soul”.

On 10 Thermidor (28 July), Couthon was executed, along with Robespierre and Saint-Just. Couthon was taken to the scaffold first, but it took the executioners 15 agonising minutes to arrange his body under the guillotine. Never blood-thirsty or cruel like his co-defendents, in death as in life Georges Couthon achieved what my French disability colleagues call “the equality of the Guillotine”.