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.

Disability newsbits

Deja vu revisited

Every once in awhile, public discourse focuses on the pros and cons of euthanasia. The issue is in the headlines in Belgium right now because that country’s Senate has voted to allow euthanasia for terminally ill children.

As the New York Times points out, euthanasia for children has been taboo in most countries ever since Nazi Germany put to death thousands of mentally and physically handicapped children during what was known as Kinder Euthanasie.

The Germans weren’t the only people who believed that so-called “defective” children should be eliminated. There was a strong eugenics movement in the United States 100 years ago and one of its results was that many states passed sterilization laws. These laws were designed to ensure that people with disabilities, those who were poor and others who lived on the edges of life could not reproduce.

There were also news stories about doctors who refused to treat newborns who had deformities. In one such case, a doctor in Chicago allowed a baby boy to die because his head was fused to his shoulder and he was born with a closed intestine. The child’s parents agreed with the doctor’s decision.

A hundred years later, we’re still debating the issue in some form or fashion.

Healthy lifestyles for people with disabilities

This is the final week for Paralympics in Sochi, and many people many not be clear on who these sporting events are for. The Paralympics are for individuals with physical disabilities. Competitors do not have intellectual handicaps, as do those who participate in the Special Olympics – a completely separate set of games.

As the Montreal Gazette points out, even though Special Olympics has been around for many decades, its focus has not necessarily been on healthy lifestyles for people with intellectual disabilities. These individuals often take more medications than people in the general population, yet they are not as likely to get routine exams for eyes, teeth and ears.

“Sport, health and healthy lifestyles can become powerful vectors in promoting the inclusion and social participation of people with an intellectual disability,” wrote Diane Morin, holder of the Chair of Intellectual Disabilities and Behavioural Disorders at the Université du Québec á`Montréal.

For that reason, it’s good to read that Special Olympics Quebec is offering special health clinics for athletes.

A teaching hotel

You’ve heard of teaching hospitals. How about a teaching hotel? My hat’s off to Marriott Hotels for its plans to build a hotel in Muncie, Indiana, staffed in part by people with disabilities.

The hotel will double as a training facility for individuals who want to go into the hospitality and food service industries. At the same time, it will provide training for human resource professionals in how to hire more employees with disabilities.

The idea for the hotel came from a dad who was frustrated at the lack of postsecondary opportunities for his son, who has Down Syndrome.

I hope to read more stories like this in the future as people with disabilities become more a part of our everyday lives. Read more about what the Brookwood Communities in Houston and Georgetown are doing to provide postsecondary work opportunities for people with intellectual disabilities on my previous blog post.

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.

Darwin’s big turnaround

Charles Darwin

Charles Darwin

It’s funny how people change their minds about a prejudice when it hits close to home.

My parents didn’t care much for journalists until I became one. Former Vice President Dick Cheney wasn’t a champion of gay rights until his daughter “came out” and married her partner. And biologist Charles Darwin thought people with intellectual disabilities were evolutionary mistakes until his youngest son was born with Down Syndrome.

Unfortunately, love doesn’t always trump bias. There are plenty of stories of parents who reject their children because of some perceived flaw or transgression.

Darwin’s story

I am particularly fascinated with the story of Charles Darwin, whose theories and writings have been of interest to me since I was a child. Darwin was a controversial figure in mid-19th century England, when he published On the Origin of Species. The book proposed that evolution is the result of natural selection – or survival of the fittest – among the species.

Darwin was also a believer in the eugenics movement, which was conceived by his cousin Francis Galton in 1883. Eugenicists believed that people with disabilities and those of certain races and ethnic backgrounds were inferior and defective. Through selective marriage practices, these so-called hereditary disorders could be eliminated.

In the meantime, according to the eugenicists, these defective people should be institutionalized, sterilized, deported or restricted from entering the country.

The ultimate irony

It was the ultimate irony, then, when Darwin’s wife gave birth to their tenth child, a boy named after Charles Darwin, and he had Down Syndrome. By all accounts, Darwin adored this child and grieved intensely when the infant died after only 18 months.

In a memorial to his son, Darwin wrote that young Charles “had a remarkably sweet, placid and joyful disposition… He was particularly fond of standing on one of my hands and being tossed in the air. He would lie for a long time placidly on my lap looking with a steady and pleased expression at my face.”

Darwin apparently made no attempt to institutionalize his little boy or to cast him aside in any way. Instead, he learned from his youngest son that people with intellectual disabilities are not evolutionary mistakes but individuals capable of giving and receiving love and of bringing joy to those around them.

It was a big turnaround for Darwin, whose theories unfortunately bestowed lasting social stigma on people with disabilities.

Capturing the Christmas spirit

Christmas tree and giftsI just went to a Christmas party for adults with intellectual disabilities and I have to say, if that’s the only holiday celebration I attend all season, I will be more than satisfied. Rarely have I seen such happiness and excitement, so many smiles and so much laughter.

I wish I could post pictures of all the happy people at that party, but each of the 50 adults at the event is enrolled in a day activity program at the local community services agency. Confidentiality laws protect their privacy.

So I will describe the best I can what I saw and heard.

Party central

When I entered the large room at the community center, all the party-goers were seated at round tables, eagerly awaiting the arrival of Santa Claus.

I spoke to one of the women, a tiny lady with delicate fingers and short-cropped hair, and introduced myself. She had a perpetual smile on her face as she repeated “I love you, Shee-uh.”

A tall, slender man, also with a permanent smile, roamed the room and silently hugged me every time he passed by.

When Santa arrived, there was a burst of shouts and applause before he started handing out gifts.

An older man with glasses and a thinning hairline was sitting off to himself when I approached him. He had gotten a Beach Boys T-shirt and CD, just what he wanted. I asked him his name and he said he’d rather be known as a Beach Boy.

At every table I visited, I was met with friendly conversation and pure, unrestrained love.

Annual holiday bash

Lucky for me, I get to attend a party like this every December. My Rotary club puts on a Christmas celebration every year for this same group and it is always the highlight of holiday festivities for me.

The first such party I attended five years ago was an unforgettable experience. As the men and women sang Christmas carols and shouted at Santa, I was overwhelmed and couldn’t stop crying. I’m not used to weeping in public like that and did my best to stop the tears, but I wasn’t very successful.

The next year, I was more composed. Each year, I’ve been able to overcome my reluctance and shyness and have been able to interact more freely with our guests.

These men and women capture the true joy and bliss of Christmas. We should all be so lucky.