Archives for November 2013

Remembering The Elephant Man

I just watched the 1980 film The Elephant Man, a true story about Joseph Merrick, the 19th century Englishman who suffered from a disfiguring ailment and who spent much of his life as a freak show attraction.

Poster of The Elephant Man movie

Poster of The Elephant Man movie

Although some of the film seems to have been fictionalized for dramatic effect, it is still a sensitive account of how disabled people have been treated throughout the centuries.

A definitive diagnosis for Merrick has never been identified, but it is most commonly believed that he had either neurofibromatosis or Proteus Syndrome. He had an enlarged head with protruding lumps and wart like growths over much of his body.

He was frightening to look at, but inside his twisted body were the heart and spirit of a man who loved art and literature. He was a talented artist who created stunning tabletop models of cathedrals.

The freak show phenomenon

The first part of the film, in which Merrick is beaten and starved by a drunken freak show operator, is painful to watch. But once he is rescued by a physician and given a safe place to live, the story takes a more hopeful turn.

Merrick, besides having a disabling disfigurement, also had the misfortune of being born in 19th century England. Freak shows were extremely popular in Europe during those days, with bearded ladies, dwarfs, people with microcephaly and other out-of-the-ordinary humans exhibited to frighten and titillate the public. (They were also popular in the United States.)

There was a hospital in London that charged admission for people who wanted to peak through a window and view people with mental illness in a locked ward. People with deformities or disabilities, who otherwise couldn’t get a job, joined traveling circuses just to survive.

The lesson

I have to say, I’m mystified by this phenomenon. Fortunately, most people developed the same reaction early in the 20th century and people who were different ceased to be objectified in such a shocking way.

We still regard people we consider “other” with suspicion and fear. We fail to fully embrace folks of a different race or nationality or those with mental illnesses or disabilities.

Which brings me to the lesson that I learned so well from my Uncle Melrose, who had a profound intellectual disability. If I take the time to get to know people I think are different, my fears dissolve and I see that we are much more alike than anything else.

Like Joseph Merrick, my uncle was “different” in appearance, but also like Merrick, he had much to offer. It was just up to me to slow down enough to appreciate him in his wonderful uniqueness.

Remembering Rosemary Kennedy

In this week of remembrances about the assassination of President Kennedy, I couldn’t help but think of all that his family did on behalf of people with intellectual disabilities. And that leads me to the tragic story of Rosemary Kennedy.

Like everyone who was alive and aware of the world on November 22, 1963, I remember

Rosemary Kennedy

Rosemary Kennedy

exactly where I was when I learned that President John F. Kennedy had been assassinated. I was in the sixth grade in Champaign, Illinois, and I heard it from one of my classmates.

I don’t have as vivid a memory of the day I learned the truth about Kennedy’s younger sister Rosemary, who had some kind of disability that was kept secret from the public for many years.

There has never been a definitive diagnosis for Rosemary, whom the family eventually claimed had an intellectual disability. By some accounts, she could read and write and perform mathematical calculations, all skills that would put her IQ above the 75 threshold for mental disability.

No room for being different

Still, there was something not quite right with Rosemary. She developed and learned more slowly than her siblings and as she entered adulthood, she became increasingly frustrated and prone to rages. Her father Joe Kennedy had lofty political ambitions for his family and didn’t want to risk Rosemary causing a scandal of any kind.

So in 1941, when Rosemary was 23, Joe Kennedy hired two surgeons – Dr. James W. Watts and Dr. Walter Freeman – to perform a prefrontal lobotomy on her.  It was an experimental treatment at the time, designed to relieve psychiatric symptoms.

The operation was a disaster, leaving Rosemary unable to speak or care for herself. She spent the rest of her life in an institution.

As mentioned before, in all the writings about Rosemary, there remains some disagreement about her diagnosis. Jack El-Hai, who wrote a biography of Walter Freeman, once told me there can be no doubt that Rosemary had a mental illness and not an intellectual disability. It would have been medical malpractice to perform a lobotomy on someone who had a mental disability.

Indeed, Dr. Watts, interviewed many years after Rosemary’s operation, confirmed that he believed she suffered from depression.

Which stigma do you want?

Whatever the truth, the Kennedy family always maintained that Rosemary had an intellectual disability.  To admit that there was mental illness in the family might have been damaging to John’s chances at the presidency. Yet, there were also stigmas associated with intellectual disability.

Nevertheless, Joe set up a foundation dedicated to research and public policy concerning intellectual disabilities. His daughter Eunice ran the foundation and also started Special Olympics, which promotes athletic achievement for people with mental disabilities.

The story of Rosemary Kennedy is a heartbreaking one, to say the least. All that can be said looking back on it is that some good came from the high price she paid for being different. The rest is pure tragedy.

Keeping balance in an off-balance world

Keeping My Balance Book CoverFor an eye-opening, refreshingly honest look at what life is like for people who have disabilities, I highly recommend Stephanie Torreno’s Keeping My Balance, a Memoir of Disability and Determination.

Stephanie is a writer in Houston and she has cerebral palsy, a condition that affects her speech and mobility. But as she points out in her easy-to-read book, she is much more than her disability. She is an honor graduate of Houston Baptist University, a daughter, a sister, an aunt, a friend and a caretaker for her mother.

Despite her keen intellect and writing ability, Stephanie has coped with periods of unemployment. She knows from first-hand experience that unemployment rates are extremely high for people who have disabilities.

Success through advocates and mentors

But she has been fortunate in many ways. She had strong advocates in her parents, who stood up for her as a child in the public schools and demanded that she get every opportunity to learn in as normal a setting as possible.

She also had other mentors, including teachers, counselors and employees of government agencies and nonprofits who helped her navigate a world that isn’t always accommodating. Stephanie writes eloquently of her struggles to do things that most people find routine. She works hard at learning to walk, spending hours as a child in physical therapy.

She also strives to make herself understood and is often frustrated when she is not. When she gets angry at the insensitivity of others or of institutions, she learns that her anger is telling her to start advocating for herself.  Because of her assertiveness, buildings at her college became more accessible.

Becoming a caretaker

She points out that when you have a disability, people talk around you rather than to you. They make decisions for you without consulting you.

But Stephanie is brutally candid about her own weaknesses. She admits to being turned off by other children in her school who are profoundly disabled and can only lay on a mat.

Later in life, after her mother has taken care of her for more than three decades, Stephanie becomes a caretaker herself when her mother suffers a stroke.

This book is honest, forthright and eye-opening, even for people like me, who worked in the disability field and spent several years as an advocate for my uncle, who had a profound intellectual disability. After reading Stephanie’s book, I realize I still have much to learn, but her insights have moved me in the right direction.