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.]

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.

Are we missing something?

It happened again last week. Leaders of a social services agency were hauled before a legislative committee to Silhouette of helping hand between two climberexplain why vulnerable people under their care were injured or died.

This time, the leaders represented Child Protective Services (CPS), the Texas agency responsible for the protection of children in foster care.

It happened 20 years ago when I was spokesperson for what was then known as the Texas Department of Mental Health and Mental Retardation. The heads of my agency would be subpoenaed to testify at the state capitol about cases of abuse, neglect and death at state institutions.

Lawmakers always expressed outrage. The agency leaders always expressed regret and promised to do better.

History repeats itself — everywhere

This kind of historical repetition is not unique to Texas. It happens all over the country.

In the 1960s, the late Sen. Robert Kennedy toured Willowbrook State School on Staten Island, New York, and was appalled at the conditions he found. He told reporters afterward that people treat their pets better than the mentally disabled children were being treated at Willowbrook.

There was a huge public outcry, but nothing changed at the school. A few years later, television reporter Geraldo Rivera took a camera inside Willowbrook and captured on film the abusive and neglectful conditions.

There was another public outcry and legislative investigations. Money was appropriated and agency leaders promised to do better.

It seems to go in cycles. Every few years, there are news reports of vulnerable people – living under the supposed watchful eye of a tax-supported agency – who have been killed or badly hurt.

 We’ve heard all this before

This week, the leaders of CPS said they were taking aggressive steps to protect foster kids. Foster parents are being more closely scrutinized. Foster children are being visited more often. Training of case workers has been ramped up so they can better spot abuse. Technology is being upgraded and abuse prevention programs are being launched.

One senator said he had heard all these kinds of promises before. He wondered what is different this time. Another senator remarked that they must be missing something.

Both senators are right. They’ve heard all this before. And they are missing something.

What they are missing – what we all are missing – is that these outrageous situations will continue to occur as long as we underfund social services.

And even then, even if we provide adequate funding, the deaths and injuries will not end. We can only get close to that goal when each of us assumes responsibility for all of our vulnerable citizens – including children, people with disabilities and the elderly.

Making a more decent society

I like what my colleague J. David Smith, professor emeritus at the University of North Carolina at Greensboro, says about this issue.

Dr. Smith, who has written extensively about the treatment of people with disabilities, says we don’t have to all become social workers or in some way devote our lives to caring for these folks. We don’t have to all be like the Good Samaritan in the Bible, who risked his life and social standing to help someone others had shunned.

“We need more acutely, however, the day-to-day caring of the Minimal Decent Samaritans,” he wrote in his excellent book Ignored, Shunned and Invisible: How the Label “Retarded” has Denied Freedom and Dignity to Millions.

“It is that quality in ourselves and others that makes for a more decent society.”

To that, I say a hearty amen.