Been there, felt that

I look out at the audience and see some heads nodding in understanding. The look on the faces of these nodders tells me they’ve been where I’ve been. They know of what I speak.

This is my experience every time I talk in front of a group about My Father’s Eyes, the story of my friendship with an uncle who had a profound intellectual disability. It doesn’t matter where I am – whether I’m speaking to a church group, a writer’s league, a service organization or at some other gathering.

I’m discovering that many, many people have been touched by disability.

Heart-grabbing stories

One woman said, “My nephew is autistic and I could really relate to your personal story.”

Another woman shared about a relative who was placed in a mental hospital decades ago only because she didn’t behave as a child. She never got out of the hospital and lost touch with her family.

One man spoke up and talked about his son who has schizophrenia and how frustrating the young man’s life is and how limited he is by his illness.

20 percent of Americans have a disability

I shouldn’t be surprised at how common it is to be touched by disability in some way. Afterall, one in five people in this country have some kind of physical or mental limitation – whether it’s mental illness, autism, intellectual disability, Alzheimer’s, lack of mobility or hearing loss.

But what does surprise me is that the negatives about living a life with disability are the same across the board. There are feelings of shame, ostracism, grief, and struggles to belong and to be productive. The pain is the same, regardless of the disability.

What I learned through Uncle Melrose is that we don’t have to let these feelings run the show. It has dawned on me that there wasn’t anything “wrong” with my uncle. There isn’t anything “wrong” with the woman’s autistic nephew or the son with schizophrenia.

They’re just approaching life from a different perspective. And it’s our job as their family members and friends to try to understand where they’re coming from.

Everyone, including my uncle, who could only say a few words and feed himself, has something to contribute to the world. The rest of us just need to pay closer attention to see what they have to offer.

 

The horse man

booksHorseBoyA few weeks ago, I had the opportunity to hear Rupert Isaacson speak at a breakfast meeting. Even though it was before 8 a.m., this travel writer, horseman and champion of children with special needs was animated, energetic and enthusiastic about the work he is doing for children with autism.

Rupert is equally committed to helping his son Rowan, who has autism, find healing and growth. He writes about his quest in The Horse Boy, a Memoir of Healing, which is part travel chronicle and part narrative about their journey to Mongolia , where they encounter shamans who offer healing rituals.

Rowan, who was 5 years old at the time, suffered from what his father described as emotional and physical incontinence. One moment he would be quiet, the next he would be screaming and gyrating. He was mostly nonverbal and could not control his bodily functions.

The human-animal bond

Changes in Rowan’s behavior began emerging before he and his parents traveled to Mongolia. Rupert discovered by accident that Rowan naturally related to horses and that when the two of them rode together, Rowan became verbal and joyful.

Rowan also had a natural affinity for animals of every sort, including goats, reindeer, and all kinds of wildlife they encountered on their journey.

After their one-month trek to some of the remotest regions of Mongolia, Rowan showed definite signs of healing. His tantrums ceased and he overcame his bodily incontinence. He also was able to form friendships with other children, to have conversations with others and to express emotion, all firsts.

Rupert doesn’t reach any definitive conclusions about the exact source of healing for his son. He doesn’t claim the shamans alone performed the miracle or that Rowan’s connection with animals accounted for the changes. He only says he searched for and found a way for his son to move past the neurological firestorms that characterize autism.

Live free, ride free

Using part of the advance he got from the publisher of his book, Rupert started the Horse Boy Foundation outside of Austin, TX. There, he’s launched a therapeutic horseback riding program for children with and without autism.

His is an inspiring story told in a remarkable book that is packed with beautiful prose describing the Mongolian steppes, mountains and forests. Rupert is refreshingly honest in revealing the frustration, anger and exhaustion he endures trying to help his troubled son. At the same time, his dedication to finding healing for Rowan is nothing short of amazing.

I highly recommend this book, not only because it is a page-turner, but also because proceeds from its sales go to support the worthy work of the Horse Boy Foundation.

Parallel universe

Surprisingly similarI should stop being surprised. Every time I read about another family with a member who has a disability, I am struck by how similar their story is to mine. I see the same emotions, the same experiences and the same themes in every family that lives with disability.

The story told in Twin, a memoir by Allen Shawn, is no exception. Shawn, a composer and professor, writes of his twin sister Mary, who has autism. When they were eight years old, she was abruptly removed from their home and went to live in an institution.

Like my Uncle Melrose, Mary was sent away without notice to her siblings. In my family’s case, my uncle was declared a ward of the state and sent to a state school when he was 15. His parents didn’t tell my dad what they were doing and he was devastated by their decision, just as Allen Shawn was by his own parents’ actions.

Lack of options

Even though Allen Shawn’s saga played out in the 1950s, his family faced the same lack of options that my grandparents did in the 1930s. There were no services other than institutionalization available.

The Shawns, like my dad’s family, may have wanted to keep their home intact, but they couldn’t cope with the special needs of their child. There were no educational opportunities in the public schools for Mary and Melrose and there were no social services.

Legacy of grief and guilt

In Twin, Shawn writes that the sorrow that his parents endured seeped into his own experience.

As an adult, he realized that he was still “carrying the burden” of the decision his parents “had made all of those years ago, one I am sure they agonized over and continued to agonize over ever after, to send their child to live away from the family. I carried their agony with me and I carried their guilt…”Twin trees

In the same way, I took on the burden of pain and grief that my father and his family felt when Melrose was sent away. No one asked me to; it just turned out that way.

Perhaps that’s the way these things play out; it takes more than one generation to work out the anguish and heartache that comes with having to institutionalize a child with a disability.

Unbreakable connection

It is understandable that Allen Shawn felt close to his twin sister. Indeed, he believed that the connectedness that began in the womb endured throughout their lives — even though they lived apart.

Although my dad and Uncle Melrose were not twins, there was a very strong bond between them. Dad took care of his younger brother; he helped him dress and eat and go to the bathroom and he defended him from neighborhood bullies.

To a lesser extent, I felt connected to my uncle. Even though I didn’t find out about him until I was in my teens, I never forgot about him. And when I moved to the city where he lived decades later, I knew I had to find him.

[Author’s Note: To demonstrate how much the world has changed, the New York Times ran a piece about a Canadian program that offers support networks and services to families with a disabled member. It’s a model that needs to be replicated in this country and elsewhere.]

How people with disabilities can transform your life

215px-Rain_Man_posterI’ve been going to a lot of movies lately, watching everything from dramas to science fiction to  stories of historical events and even tales of the mystical and fantasy. But I have to admit that I am particularly moved by films that inspire me, and I haven’t seen a movie that does that in quite some time.

One such motion picture that fit the bill for me (and goes along with the theme of National Autism Awareness Month) was Rain Man, starring Dustin Hoffman and Tom Cruise. This 1988 film is about a man (Raymond Babbitt played by Dustin Hoffman) who is both autistic and a savant.

Tom Cruise plays Hoffman’s brother Charlie Babbitt, who does not know he has a brother until after their father’s death. The father’s will leaves almost the entire estate to Raymond, who has lived in an institution since he was a child. The movie is mostly about Charlie’s attempt to get a share of the money.

Focus on autism

Charlie also uses Raymond’s skills at card counting to win money at casinos in Las Vegas. The film is partially accurate in its portrayal of autism. Raymond is a creature of habit, demanding fish sticks on a certain night every week and insisting on watching the Jeopardy game show every day when it comes on television.

He also exhibits rocking behavior and does not establish eye contact with others — both symptoms of autism.

But as experts point out, not all who have autism exhibit the characteristics Raymond has. There are many manifestations of autism and those who have it can land anywhere on the broad autism spectrum.

Rain Man was important because it shed light on the subject of autism at a time when it wasn’t a widely discussed human condition. It was also important because it showed how people with disabilities – even severe ones — can have a powerful impact on others.

People like Raymond have much to offer

In the case of this film, Charlie starts out trying to use his brother to get money. After many adventures together, Charlie learns to love and accept his brother and transforms from a user to a caretaker.

This is the message that I find so inspiring in Rain Man. It is the same message I learned from my Uncle Melrose, who had an intellectual disability. I found that if I spent time with him and honored his needs – even though they didn’t match my own – that the rewards would be a sense of peace and the knowledge of his unconditional love.

The bottom line is this: People who have disabilities can have a transformative effect on those around them. It’s just up to those of us around them to pay attention and learn the lessons they can teach us.