Good Kings Bad Kings

Good Kings Bad KingsWith Good Kings Bad Kings, author Susan Nussbaum succeeds spectacularly in writing about disabilities from the viewpoint of people who live with them.

The disabled teenagers in the book make it clear in beautiful chapter-long monologs that they are just like everyone else. They want to be accepted and to be treated with respect; they want friendship and love and sex. They want to live as independently as possible and to have control over their own lives.

The book also is told from the viewpoint of staff members at the nursing home where the teens live. The workers describe how they handle overwhelming responsibilities but receive low pay and minimal training. They also describe the behavior of other employees, who don’t have the temperament to work in a nursing home and so they abuse the kids physically and verbally.

Horrors and justice

I was struck by the helplessness and vulnerability of some of the teenage characters. One severely disabled woman is repeatedly raped by a staff member. A young boy with ADHD who acts out in class is thrown into the time-out room and denied food after his teacher humiliates him in front of the other students.

There are more horrors in the book, but there are also tales with happy outcomes. The “bad” guys get arrested or fired. And some of the teens find the love and intimacy they yearn for.

The author, herself a wheelchair user, wrote the book to give disabled people a voice. She believes that people like her are not accurately portrayed in literature, film and in the general media.

“The way disabled people are represented by the dominant culture is most always as a foil for the nondisabled protagonist,” she says. “They’re in the story so the nondisabled person ‘can become a better person.’ Once the disabled character fulfills that role, they’re usually killed off, miraculously cured, or institutionalized.”

“Medieval Concepts”

Nussbaum also points out that in the case of kids with disabilities who live in an institution, it’s the adults who have all the power. “…when the adult in question has no emotional connection to the child, and the child’s welfare is turned over to that adult – as is the case in many institutions – terrible things can happen.”

I was also interested in her views on why these conditions exist even though many people who work in institutions have good intentions. She calls nursing homes, mental hospitals and residential facilities for people with disabilities “medieval concepts” that need to be done away with. The problems she writes about are systemic to institutionalization.

Even though the book has many tragic tales, it is told with an honesty and balance of humor that makes it very readable. I zipped through this excellent book in about three days. I highly recommend Good Kings Bad Kings.

[Author’s note: Not everyone affected by disability believes that institutions should become a thing of the past. Wendy English, a woman who lives in the Woodbridge Developmental Center in New Jersey, has a different perspective than Susan Nussbaum.]

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.]