October 16, 2012

Silence doesn’t always mean secrecy

I have often pondered the secrecy that seemed to surround the existence of my Uncle Melrose, who had a profound intellectual disability. No one in my family ever talked about him – not my Dad or my other aunt and uncles or my grandfather.

As I have learned in the past few years, my family was not unique. The same veil of silence seemed to affect many other families who had a member with a disability in the early to mid-20th century.

Surely, I thought, a certain amount of shame was behind the attitude of my father and his relatives. And that was understandable, given that Uncle Melrose was born in an era when people like him were considered a menace to society. It was generally accepted that people with intellectual limitations were born of bad stock and would either be a societal leach, a criminal or a prostitute.

Out of sight, out of mind

It was widely believed that people with intellectual disabilities were a danger to society and vice versa. Steps must be taken to protect one group from the other. That’s why institutions were built in remote areas – to remove the disabled from the mainstream.

To keep the population of the “feebleminded” under control, there was widespread support for the eugenics movement. Sterilization laws were passed in many states and tens of thousands of people – most of them in institutions – were rendered incapable of reproducing.

Many people – including the highly educated – believed that if a person was born with an intellectual disability, it was retribution for some sin by the parents.  Perhaps the father was a womanizer or the mother had taken to drink.

No other options

When I consider these things, I think it’s a miracle that Dad’s family kept Uncle Melrose at home until he was 15 years old. It was only when the family couldn’t handle my uncle’s explosive outbursts of frustration any longer that they placed him in a state school in Texas.

That must have been unbelievably painful for all of them, including Melrose. I know it was for my dad, who expressed outrage to his parents for their decision.

Help from Pearl Buck

Pearl Buck

When you look at the whole story, it is easy to see why my uncle seemed to be a family secret. But there is one other factor that I had overlooked until I read The Child Who Never Grew, by Pearl Buck. When the book was published in 1950, Buck revealed that she had a daughter with an intellectual disability.

Her daughter Carol was someone she had not been able to acknowledge even though she had raised her for several years before placing her in an institution. When Buck’s  award-winning novel The Good Earth was published, the public was naturally curious about the author. But Mrs. Buck could not talk about Carol. The reason, she said, was “not shame at all but something private and sacred, as sorrow must be. I am sore to the touch there and I cannot endure even the touch of sympathy.

“Silence is best and far the easiest for me. I suppose this is because I am not resigned and never can be. I endure it because I must, but I am not resigned.”

Perhaps it was the same for my father.  Thoughts of his brother made him sore to the touch. He knew he must endure the pain, but he could never resign himself to his brother’s condition or to his institutionalization. And so, as it was for Pearl Buck, silence was the easiest thing for him.

Filed Under: Sheila Allees Disability Blog Tagged: , , , , , ,
September 12, 2012

The Kennedy legacy

When most people think about the Kennedy dynasty, they think of politics and power and wealth. How could you think otherwise when three of the Kennedy brothers became U.S. senators and one became president?  One might also think of tragedy and heartbreak – with the assassinations of John and Robert and the deaths of Joe Jr. on the World War II battlefield and Kathleen in a plane crash.

Of course, when I think of the Kennedy legacy, I think of all these things. But I also reflect on all the family has done to advance the standing of people with intellectual disabilities. As is so often the case among people who take up causes, the Kennedys had personal experience with disabilities. John’s oldest sister Rosemary had a disability of some kind – the family always said it was an intellectual limitation. There is some debate about that diagnosis; nevertheless, Rosemary was the impetus for the family’s activism in the field of disabilities.

The Kennedys as activists

Rosemary’s younger sister Eunice prevailed upon John, when he became president, to establish the first President’s Committee on Mental Retardation. During his administration, he was the first president in history to welcome a person with an intellectual disability into the White House.

Later, Eunice and her husband Sargent Shriver founded the Special Olympics, providing athletic competitions worldwide for people with intellectual disabilities. Today, millions of athletes participate in sporting events in 170 countries.

The Shrivers’ son Anthony Kennedy Shriver built on their legacy by founding and building Best Buddies, an organization dedicated to creating one-to-one relationships and employment opportunities for people with intellectual disabilities. It is a volunteer organization, pairing college and high school students and adults with peers.

Best Buddies recognizes that people with intellectual disabilities are often excluded from society. By creating meaningful friendships, Best Buddies seeks to change public perceptions and to help people with intellectual disabilities live richer, more meaningful lives.

My dad was a Best Buddy

As I’ve mentioned in previous posts, decades ago, long before the founding of Best Buddies, my dad filled a similar role for his younger brother. He tried to include his disabled brother in neighborhood baseball games and he protected him from tormenters. Later in life, I became my uncle’s Best Buddy, taking him out for hamburgers and for rides in the park.

As I’ve learned in writing about my uncle, people with intellectual disabilities want the same things as everyone else – love, belonging, and a sense of purpose. I’m grateful there are organizations like the ones the Kennedys founded to help people with special needs find a place in this world.

Filed Under: Sheila Allees Disability Blog Tagged: , , , , , , , ,
September 6, 2012

The sibling syndrome – revisited

After my last post about siblings of people with disabilities, my friend Rachel Simon (who wrote the very fine book Riding the Bus With my Sister) pointed out that there is an excellent organization that helps with sibling issues.

It’s called the Sibling Support Project, a nationwide support system for brothers and sisters of people with special health, developmental or mental health needs. The project trains service providers throughout the United States on how to implement the Sibshop program. This program helps siblings know they are not alone with their unique concerns.

Support for siblings of all ages

The project seeks to provide support not only to children but also to teens and adult siblings. An excellent video has been released about the sibling project. It features siblings of all ages talking about the joys and trials of having a family member with a disability.

I am so glad that our society is open enough to talk about such issues and to find ways to help families cope with disabilities. I only wish these services had been available when my Dad was growing up during the Depression.

His younger brother, my Uncle Melrose, had an intellectual disability and at the time, there were no services to help the family. My uncle couldn’t even go to school because there were no special education classes.

A childhood lost

As a result, my Dad — the oldest of five children — was called into service to take care of Melrose. My Uncle, who was nicknamed Pie, was anything but the saying “easy as pie.” He was often frustrated at his limitations and in response, he threw violent tantrums. He couldn’t dress himself and he needed help with almost everything. My Dad became his caretaker.

The situation robbed Dad of much of his childhood. I have often wondered how his life — and Uncle Melrose’s — would have been different if the world had been more open to them.

I’ve wondered what Pie might have learned if he had been able to go to school. And I’ve wondered if Dad could have been more emotionally open if he had been able to be around others who understood his situation.

Filed Under: Sheila Allees Disability Blog Tagged: , , , , , ,
September 4, 2012

The sibling syndrome

Being a sibling of a child with an intellectual disability can be life-defining. I know, because that’s what happened to my father, the oldest of five children — one of whom had a severe intellectual disability.

Dad grew up during the Depression and so he didn’t just have to deal with a disabled brother, he had to cope with poverty. His father was a traveling salesman and he was gone all the time. Dad’s mother relied on him as the responsible one.

Research

Not much research has been done on the impact of having a sibling with a disability. As physician Ranit Mishori, who has a brother with autism, points out in the Washington Post, most research has focused on the parents and how their lives are affected. Any research on siblings has been aimed at academic performance and mood disorders.

Experts who have worked with older siblings report that they feel an overwhelming sense of responsibility. Younger siblings, who have never known life without a disabled person in the family, seem to have less difficulty adjusting.

For my dad, having to take care of his brother robbed him of part of his childhood. When Uncle Melrose would have a tantrum, Dad would have to take him for a ride in the car to calm him down. When Dad would play baseball with his neighborhood friends, he would find a way for Melrose to participate and not disrupt the game.

Dad helped his brother dress and eat and he took him to the bathroom. I’m sure there were other routine tasks he helped with as well.

Guilt, anger and pain

When Dad graduated from high school, he moved out of the house and got a job. His parents, who had relied so heavily on him as a caretaker, found they couldn’t handle Uncle Melrose and they sent him to live in an institution.

I don’t think Dad ever got over the pain and anger of his parents’ decision. And I don’t think he ever got beyond feeling like the responsible one in every situation. He learned early on to suppress his feelings and he was never able to become emotionally present.

Being the older brother of a sibling with an intellectual disability was a two-edged dagger for him. It cut him two ways — one bad, the other good. It damaged him for life but also made him one of the most unselfish people I’ve ever known.

Filed Under: Sheila Allees Disability Blog Tagged: , , ,