Archives for November 2012

Surprised by Peace

Sometimes, you can find peace in unexpected places. That certainly happened to me one Sunday when I went to visit my Uncle Melrose at the nursing home where he lived.

Although it was considered a “good” nursing home, it wasn’t the happiest of places. I saw few smiles on any faces as I made my way to the end of a long wing, where my uncle shared a room with another man.

No one wanted to be there; not me and especially not my uncle, who had a profound intellectual disability. He was 78 years old and had been forced to move to the nursing home after he became too medically fragile. He had been happily living at a group home, where he had friends, work and daily activities.

I used to go get him at the group home and take him out for hamburgers and for a drive around the park. He loved it. He had always loved riding in the car and now, because he was so frail, we couldn’t even do that.

Sitting on the front porch

When I got to Uncle Melrose’s room, I helped him out of bed and into his wheelchair and wheeled him into the kitchen, where we got him a glass of apple juice. Then we headed for the front porch.

It was a balmy day – perfect for sitting outside and watching the cars go by. I pulled up a chair next to him and watched him sip juice. Like always, we didn’t talk. Uncle Melrose couldn’t say very many words. Only “Yes,” “No,” and “Where are we going?”

My plan was to sit with him for a few minutes and then head out to church. But the more I sat with him, the more peaceful I became. There was something about being around my ailing, disabled uncle that brought me a sense of calm.

I decided it would be silly to leave him alone and go to church. I couldn’t get any closer to God than I already was. So I stayed and in peace, the two of us watched the cars go by for the next two hours.

Only God knows his name

‘Life’s a mystery, but so, too, is the human heart.’

These are lyrics from a song titled John Doe #24, written by Mary Chapin Carter after she read a New York Times obituary of a man by the same ‘name.’  He was so called because no one ever knew his identity.

As a teenager in 1945, he had been picked up by police in Jacksonville, Illinois, while he was rummaging through trash.  He was carrying no identification and was unable to speak because he was deaf.  The police sent him before a judge, who deemed him feeble-minded and ordered him committed to the Lincoln State School and Colony.

For the next 50 years, he lived in various institutions, homes and nursing homes. No one ever came looking for him. Authorities never learned his name. Many of his caregivers were convinced that he did not have an intellectual disability.

When Mary Chapin Carter read of his death, she wrote the above-mentioned song, included it in an album and sang it on concert tours. Journalist Dave Bakke, who writes for the Springfield Journal-Review, read about the song and became intrigued with the story behind it.

He eventually was able to secure the man’s records from the state and from those documents, constructed a biography of the man with no name. It is titled God Knows His Name: The True Story of John Doe No. 24.

But that is not the end of John Doe’s story. After Mary Chapin Carter read of his death and wrote the song, she purchased a grave marker for John Doe No. 24’s theretofore unmarked grave.

John’s story inspired another writer Rachel Simon, who happened upon Bakke’s book and felt compelled to write a novel, The Story of Beautiful Girl. One of the main characters in the book is based on John Doe No. 24.  The Story of Beautiful Girl, which was published earlier this year, has been on the New York Times Bestseller List.

Stories like this, while tragic and heartbreaking, also give hope. Few people have been more anonymous than John Doe No. 24. But because he could not communicate and no one claimed him, he was shuffled off to a state school.

He represents tens of thousands of individuals who have lived in obscurity and anonymity in similar institutions throughout history. I have to wonder what human potential has been lost because people didn’t know how to give individuals like John Doe No. 24 what they needed.

I have embarked on a quest similar to that of Dave Bakke, writing a book about my Uncle Melrose, who had a profound intellectual disability and who spent nearly 60 years in a state institution. Like Dave Bakke, I want a once obscure story told. I want people to know what a great person my Uncle Melrose was.

Let the spirit catch you

Lia Lee and her mother Foua

Throughout history, people with disabilities have been at the mercy of the culture they were born into. Some cultures shun people who are different mentally or physically. Others embrace them and attach special meaning to their circumstance.

This latter tendency to revere and honor people with disabilities is one of the themes of a book I’ve recently read. It’s called The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures.

By Anne Fadiman, it tells the story of a family of Laotian refugees who flee to the United States after their country falls to the communists in 1975.  After their arrival in Merced, CA, the Lees – who already have eight children – have a baby daughter Lia.

Clash of two cultures

It soon becomes clear that Lia has a severe form of epilepsy, which causes serious and frequent seizures.  In Hmong, the condition is known as qaug dab peg (pronounced “kow da pay”). The Hmong believe that qaug dab peg and other illnesses are spiritual in origin and are the result of the soul becoming separated from the body.

(The English translation of the Hmong term is “The Spirit Catches You and You Fall Down.”)

Because of their animist belief system, the Lees have serious clashes with the American doctors who treat their daughter when she has seizures.  Much of the book is about the gap between the two approaches to treating epilepsy.

But it’s also about how the Hmong view people with physical and mental deformities. Eventually, Lia has a catastrophic seizure when she is 4 years old and she suffers so much brain damage that she enters a vegetative state.

Most humans who suffer this level of brain trauma do not live for more than a few months. Because Lia’s family refused to leave her in the hospital and instead took her home and showered her with nonstop care and affection, she lived for 26 years. She died in August 2012 at the age of 30.

Children with disabilities showered with affection

Lia’s remarkable story is not unusual, given the Hmong culture.The anthropologist George M. Scott Jr., quoted in Fadiman’s book, says that in Laos:

“Children were generally deeply adored… Even those with physical or mental deformities were showered with affection, indeed with even greater affection than normal children, which resulted in part from the belief that… the deformity was the consequence of past transgressions on the part of the parents and thus must be born with equanimity and treated with kindness as means of expiation.”

In the Lee’s case, they were pretty sure her condition wasn’t the result of something they had done. Rather, it was the result of what the doctors had done.

Whatever the reason for Lia’s vegetative state, the family could not imagine treating her any other way than to make her the center of their household and to be attentive to her every moment.

For western cultures, the Lee’s response is nothing short of amazing. Most people in our culture who have a family member with such severe brain damage would place them in a nursing home.

Every person has value

As Anne Fadiman says, before she met Lia, “I would have considered Lia – someone who cannot speak, laugh, think, work, or in my lexicon, ‘contribute’—deserving of kindness but of little value, a partial person if a person at all.

“She taught me otherwise. How can I say she is not valuable when she means so much to the people around her?

“How can I say she has nothing to contribute when she altered the course of my family life, my life as a writer, and my whole way of thinking – and may also have influenced some of the people who have read about her?”

Indeed, Fadiman’s book – which has sold almost a million copies — – has become required reading in many medical schools and in university programs in social work, journalism and other disciplines.

There can be no doubt. Lia Lee’s life had great value. So did the life of my Uncle Melrose, who had a profound intellectual disability.

We’ve all got something to learn from each other, no matter who we are. We just have to slow down long enough to listen.