Force of nature

Lawyer, author and campaigner Harriet McBryde Johnson has taken on the notorious bio-ethicist Peter Singer. She tells Sunil Peck why she believes equality is an unrealistic goal

Harriet McBryde Johnson has won plaudits in America for raising the profile of disability rights among a mainstream audience.

She has waged a campaign since 1991 against the Telethon, a television event which uses negative and mawkish images of disabled people to raise money for the Muscular Dystrophy Association; she has faced-off with a controversial bio-ethicist; and she is an accomplished author.

Her first children’s book, Accidents of Nature (right), is now out in paperback in the UK. It stands up as a well-written novel with interesting characters. But it is also an impressive portrayal of the way that non-disabled people treat disabled people with pity and condescension.

It is set in a summer camp for young disabled people. Its narrator, Jean, has cerebral palsy but she attends a mainstream school and is unused to interacting with other disabled people.

But Jean is introduced to disability culture after she makes friends with Sarah. Sarah hails from a special school and is a veteran of Camp Courage. Sarah is bolshy and spends her time railing against the camp staff for their condescending treatment of her and the other disabled campers.

The novel is not strictly autobiographical but the plot does draw on Johnson’s experiences of summer camp as a teenager. She says that spending time in the camps, segregated from the mainstream, played a positive role in developing her disability consciousness and spurred her on to become a professional high achiever - she is a lawyer, who specialises in disability benefits and social security issues.

Some people might think that Johnson’s position is a surprising one for a disability activist to adopt, but she explains herself by comparing the situation of most disabled people with that of people from ethnic minorities.

“In work or school, people from ethnic minorities have a place in the mainstream. But in order to handle that experience of being different, it’s important to have a supportive community which understands what you are going through, has gone through it and will give you reality checks. It happens naturally for an ethnic minority because there is a family and sometimes there is a neighbourhood. Disabled folks typically don’t grow up in disabled families or have that type of support.”

Johnson left special school to attend a mainstream school in her teens. She worked as a teacher and in a range of jobs, but began working as a lawyer just over 20 years ago.

She gained exposure to mainstream America in 2003 when her picture appeared in the New York Times alongside her article about her debates with the bio-ethicist Peter Singer. Singer is a vociferous advocate of a parent’s right to have a baby killed if it is born with an impairment. Johnson was vulnerable to accusations of legitimising his views by choosing to engage with him. But years later, she says her decision was the right one.

“I would have been happier to come back thinking that he was an evil monster, but it was more distressing to realise that his attitudes are pretty mainstream. I came away with the conclusion that his disability prejudice was not very different to most non-disabled people.

He was not operating from a weird position of hate or disgust, it was more like pity. He thought that we were less likely to be happy, [and are] unfortunate and sad.”

Despite the ubiquity of pity which Johnson identifies in attitudes to disabled people, she is nevertheless upbeat about the appointment of a visually-impaired politician, David Paterson, to the post of governor of the state of New York (Disability Now April, World View).

She breaks off briefly before launching into a passionate defence of Pope Benedict’s predecessor, from her office in South Carolina.

“I had my disagreements with Pope John Paul II, but I really like the fact that he continued to be out there with really advanced Parkinson’s. He was out there speaking English, Spanish or whatever. All of it hard to understand because of the Parkinson’s, but he was still doing it.

There was a serious discussion about whether his job was about looking good or representing the religious principles. That was a wonderful experience for the world
to go through.”

Johnson hopes that one day, disabled people will enjoy universal equality in the sense of enjoying full civil and human rights and the resources to flourish in their own ways.

“We are expanding the notion of what is acceptable. Eventually, I think we just ought to come to the conclusion that any person is uniquely and immeasurably valuable. Because every person's value is immeasurable, there cannot be an ultimate pecking order.

"I tend to think that immeasurably valuable [is the right description] rather than equal because we will always have scales where different people rank in different places – like athletics.”

And she applies this principle to Singer himself. “Peter Singer is immeasurably valuable. A lot of people really value his work on animal rights and as far as I can tell, he is an excellent, conscientious teacher. That has some value, too.”

Johnson says she has no idea what the future holds for her in terms of writing more books, but she does intend to carry on with her work as a lawyer.

“I’m not much of a future planner. I do what I do and see what happens. I will probably die with my boots on, as they say. I like my work and I need to work to pay for my life. We don’t have a good system of social support here.”