It’s the stares, not the stairs

You would think that the one place in the world where people with disabilitiesAccessible Path To Church would be welcomed and accepted would be the church. Sad to say, with a few exceptions, it’s not the case.

That being said, I was happy to read an article in the Orlando Sentinel about several Florida churches that are making a concerted effort to be more inclusive.

The focus in the article is not on architectural barriers in church buildings, but rather on attitudinal walls that separate those who have disabilities and those who don’t. As one person put it, it’s not the stairs, it’s the stares.

I can’t imagine what life would be like if I was the object of stares or if people gave me a wide path because I had a disability that made me look or act differently. I suppose it’s understandable to some extent, but it shouldn’t be in a church setting. Speaking as a church member and a Christian, it’s incumbent upon me to be more aware and more open to all people.

The article mentions “disability theology,” which is a new term for me. It essentially means that people who have disabilities are created by God and they have special gifts to offer others.

Disability theologians contend that people with disabilities don’t need to be fixed. They just need to be accepted and welcomed.

I certainly found that to be true with my Uncle Melrose, who had a severe intellectual disability but an incredible capacity for love. I discovered that by welcoming him into my life, it was a win-win for both of us.

I’m also happy to report that my uncle loved to go to church and he did so every chance he got. I hope he got the love and acceptance he deserved on those long ago Sunday mornings.

My Dad, the strong, silent type

Dad and me1My father is more than a title figure in my new book My Father’s Eyes. He plays an integral role in the story of the friendship I had with his younger brother Melrose.

My dad, whose name was Doug, was much like other Dads in the 1950s and 1960s. He was quiet and didn’t share his innermost feelings. He showed his love for his children by working very hard at his job, making sure we had our physical needs met and insisting that we go to college.

He was much like the father described by Tom Palaima in a Father’s Day essay that appeared in the Austin American-Statesman. Like my dad, Palaima’s father grew up in the Depression and served in World War II.

“Our fathers worked hard at jobs we knew little about. They kept to themselves their fears, troubles, doubts and emotions, positive and negative. They rarely talked to us about their views on life, their hopes, dreams, successes and failures,” Palaima writes.

Striking similarities

I was amazed that Palaima’s parents, like mine, had a baby who died at birth and then never talked about the loss. Both he and I discovered the existence of a sibling when we visited the family burial plots.

I wonder how many other folks in the Baby Boom generation have siblings who died and were never mentioned again. I’m guessing there are a lot of them.

Our fathers were shaped and molded through the hardships they endured as children and later as soldiers. And in my dad’s case, he was also deeply affected by the fact that his brother Melrose was profoundly intellectually disabled.

Growing up before his time

In the 1920s and 1930s, when the brothers were growing up, there were almost no services or resources of any kind to help Dad’s family. And since my grandmother had five children, much of the caretaking of Melrose fell to my Dad, who was the oldest.

Dad helped Melrose eat and get dressed, he took his brother to get milkshakes on hot summer afternoons, he defended his brother from the neighborhood bullies and made sure he was included in all the vacant lot baseball games. Dad loved his brother so much and had such a strong sense of duty that he was devastated when his parents decided to send Melrose to live in an institution.

So my thanks to Tom Palaima for writing about his quiet, reserved, hard-working father and how his dad was shaped by the times he lived in. His column reminded me of Doug Allee, who was a good man and a hero who never got much recognition.

Happy Father’s Day, Dad. Hope you and Melrose are drinking milkshakes right now.

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.

 

My Father’s Eyes launches!

Sheila Allee and her Uncle Melrose

Sheila Allee and her Uncle Melrose

In My Father’s Eyes, released today, I help you see how anyone, regardless of their limitations, can make a contribution to the world.

I tell the story of how my Uncle Melrose, who had a profound intellectual disability, spent more than 50 years in an institution. He was isolated from his family and the mainstream of life. Yet he had a powerful impact in his 79 years on this planet.

My Uncle Melrose was something of a family secret. It wasn’t until I was a teenager that I found out that he existed. No one ever talked about him even though he had grown up with my father and three other siblings in my grandparents’ house.

The truth comes out

When I found out about Uncle Melrose – by accident – I was shocked and horrified. How could my family send one of their own away and seemingly forget about him?

As I got older, he stayed in the back of my mind. I thought about him from time to time and wondered what his life was like. I also became increasingly judgmental and even angry at what had happened to my uncle.

But I later discovered that there was much more to the story of why Uncle Melrose was sent to live at a state school 200 miles from his family. And there was much more to the story of why he had dropped out of our family’s narrative.

Eventually, I located Uncle Melrose and he and I became good friends. I grew to be very fond of him and started acting in the role of his guardian.

Uncle Melrose was a hero

In the process, I thought I was righting a wrong that had been done to him decades before. But what really happened was that my uncle had a powerful and healing impact on me.

I wrote My Father’s Eyes because I wanted to put out the word about what a great guy Uncle Melrose was. The book started out as his biography, but it morphed into a memoir.

It was difficult to tell such a personal story. Sometimes I felt I didn’t have the chops to do it. But it would not let me go, and the result is now available on my Author’s Bookshelf.

[If you would like a signed copy of the book, you can purchase it on the home page of this website.]

Medical research — it’s not what it used to be

A pipette dropping sample into a test tube,abstract science backJustine Dyer could be the poster-woman for 21st century medical research on people with intellectual disabilities. Justine is 26 years old, has Down Syndrome, lives in a house with two roommates and has a job.

She is also undergoing screening for a trial for a drug that could help improve her memory and language skills.

To be a part of the drug trial, Justine has to give what is known as “informed consent,” and that’s a tough requirement for anyone with cognitive disabilities.  Historically, researchers and doctors have provided subjects with lengthy and complicated consent forms, making it difficult if not impossible for people like Justine to understand what they are signing up for.

Typically, they relied on a parent or guardian to make the decision for them and that was problematic. Ethical scientists want their subjects to fully understand all potential consequences of being in a drug trial.

Informed consent simplified

Researchers think they may have found a way to help trial participants better understand. Using pictures, cartoons and simplified language, doctors and scientists have created consent documents custom-made for people with intellectual disabilities.

I love what Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, says about the efforts underway.

“This is an era of participatory research,” he says. “We do not want to do research on people with Down Syndrome. We want to do research with people with Down Syndrome.”

This mindset and the commitment to working with individuals who have an understanding of what they are agreeing to is a far cry from the days when medical research was conducted at residential institutions for people with intellectual disabilities.

What happened at Willowbrook

The most famous of these research efforts occurred at Willowbrook State School on Staten Island, New York, in the 1950s. The lead scientist Dr. Saul Krugman has been almost universally condemned for his studies of hepatitis at the state school, home to thousands of children with intellectual disabilities.

After receiving consent from the parents of participating children, Krugman had the youngsters injected with a mild form of hepatitis. He was testing a theory that the body can build up its own antibodies to hepatitis in the same way that it does to polio.

Krugman’s study was far more complex than is described here, but it is fair to point out that he had been brought to Willowbrook to come up with ways to halt the spread of hepatitis at the school.  As a result of his work the incidence of hepatitis at Willowbrook was reduced by 85 percent.

Nevertheless, a positive outcome does not excuse unethical research.  There are plenty of arguments both for and against what Krugman did. And the result of the controversy and the difficulties with informed consent has been a reluctance by scientists to conduct studies that would benefit this population.

It’s a sign of the times and the progress that’s been made that people like Justine can fully participate in beneficial studies that help individuals like her. And it’s long overdue.