One day, this won’t be news

Call me a dreamer. Call me idealistic. But I have a vision of a world in which people like Grace Ramsburg can be in a Super Bowl commercial and it won’t be so extraordinary.

Grace Ramsburg, 8, in Super Bowl ad.

Grace Ramsburg, 8, in Super Bowl ad.

But for now, I rejoice in the fact that this 8-year-old cutie, who has Down Syndrome, will have a brief appearance in a McDonald’s commercial during the big game.

Grace’s mom Holly Ramsburg says she’s not sure if her daughter realizes what a big deal this is.

She told Disability Scoop, “There’s still misunderstanding and there’s still judgment.

“I feel like everyday when we go out and we’re able to get her face out there, and get her personality out there, it is wonderful.”

One day, this won’t be a newsworthy event. I hope I get to see it. I hope Holly does, too.

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.

Embracing people with disabilities

I marveled last week at the images of Pope Francis physically embracing people with disabilities. In this first photograph, he stopped his Popemobile to give a blessing to a man who was being carried by another. These images prompted me to look for other pictures of famous and powerful people in similar situations.

Pope Francis blesses man with a disability in St. Peter's Square.

Pope Francis blesses man with a disability in St. Peter’s Square.

Pope Francis stopped to hug an American boy who has cerebral palsy.

Pope Francis stopped to hug an American boy who has cerebral palsy.

Pope Francis has consistently lived up to the legacy of his namesake, St. Francis of Assisi, who lived a live of poverty, humility and compassion. I am hopeful that images like these, which went viral on the Internet and were shown widely on television, will go a long way to softening public attitudes toward those with disabilities.

This young boy, Dominic Gondreau, was seated near the front in St. Peter’s Square on Easter Sunday. There were perhaps a quarter million people in the square, but Pope Francis noticed Dominic. His father, Paul Gondreau, later talked about what this encounter meant to him and his family.

Humanitarian and theologian Jean Vanier fully embraces people with intellectual disabilities by living in community with them.

Humanitarian and theologian Jean Vanier fully embraces people with intellectual disabilities by living in community with them.

Jean Vanier left a promising naval career and life in academia in the 1960s to set up a L’Arche community in Trosly-Breuil, France. After becoming aware of the plight of thousands of people with developmental disabilities living in institutions, he invited two men to live with him in the first L’Arche house. He has devoted his life to writing and lecturing on embracing people with disabilities. He still lives in the original L’Arche community.

President Obama embraces Rosa Marcellino of Maryland after he signed Rosas Law.

President Obama embraces Rosa Marcellino of Maryland after he signed Rosa’s Law.

President Obama signed Rosas Law in 2007, requiring that all government documents eliminate any reference to mental retardation and instead use the term intellectual disability. The law was named for Rosa Marcellino, a 9-year-old girl with Down Syndrome who lives in Maryland. Rosa’s family fought to get the law passed. Her brother, Nick, said, “What you call people is how you treat them. If we change the words, maybe it will be the start of a new attitude toward people with disabilities.”

Why we need to nix labels for people with disabilities

Blank TagThere’s a lot of talk these days about doing away with the “R” word (as in “Retarded.”) It’s a worthy endeavor and I support it, but I can’t help but wonder about a few things.

First, terminology describing people with intellectual disabilities (intellectual disabilities being the accepted label in today’s language) has evolved over time. When my uncle Melrose was born in 1921, he was described by a doctor as being feeble-minded.  This is a derogatory term today, but in those days, feeble-minded, moron and idiot were accepted labels. Over time, they gained negative connotations.

The same has been true for “retarded.” It is used as a slanderous description and has fallen out of favor in the disabilities community.  One has only to read the articulate writings of John Franklin Stephens, a man with Down Syndrome, to understand how this label affects people like him.

The short lifespan of labels

Second, I wonder about using labels of any kind — period. It seems that given the evolution of labels, eventually “intellectual disability” will be rejected for some other word choice.

I was recently approached by a couple who told me they had a grandson with a high IQ but who seemed to be incapable of functioning on a social level.

He had graduated from high school and had a job, but had no friends. Fearing he was autistic, they felt he needed a  diagnostic “label” so he could get the treatment they believed he needed.

I can certainly understand their desire for him to lead a full and meaningful life. And I can understand the need to determine if something is “wrong” with their grandson.  If he were my child or grandchild, I would want him to get everything he needed to prosper and find happiness.

All labels should become historical artifacts

I found it difficult to reconcile this need with the call from many experts to do away with all labels for people with disabilities.  J. David Smith, a professor at the University of North Carolina-Greensboro, writes about this subject in his book Ignored, Shunned, and Invisible: How the Label “Retarded” has Denied Freedom and Dignity to Millions.

Smith says the now taboo term mental retardation is a myth, “a false and unhelpful categorization of people with very diverse needs and characteristics.” Smith says the term mental retardation is “scientifically worthless and socially harmful.”

We need to change our minds

He adds that more important than changing terms is “changing our minds about the needs and potentials of the people with the disabilities to whom the words refer….[M]illions of people have had their lives diminished by the words we have used and the lack of value we have place on their lives.”

In all my readings, I have found it most helpful to look at the subject of disabilities in this way: Each of us is unique and each of us has gifts to offer in this life – regardless of our physical or mental condition. Ultimately, we’re all human beings who deserve acceptance. It’s a lofty ideal, but one worthy of pursuing.

Nikki Sixx and the sister he never knew

Nikki Sixx of Motley Crue

Nikki Sixx

Every time I run across another story about a family with a long-lost member who was institutionalized, I hear the same themes and emotions expressed — shame, guilt, fear, pain, secrecy, regret.

Thanks to my friend Janet Kilgore, an outstanding writer, editor and humorist, I have found another story. And this one is from a most unlikely source.

Nikki Sixx, of the heavy metal band Motley Crue, reveals in his book This is Gonna Hurt: Music, Photography and Life that he had a sister who was born with Down Syndrome. Lisa, who was also blind and almost completely deaf, was sent to an institution at an early age. Nikki has no memory of ever seeing her.

Mom, where’s Lisa?

Sixx says when he asked his mother about Lisa, she said Lisa got too upset when the family tried to visit her at the institution.

“She was comfortable there, with people who cared for her, and seeing us would ruin everything,” he quotes his mother as saying. She told him that Lisa was born in the ‘60s and things were different then. There was no way for her to take care of a disabled child.

“I have always felt guilty that I didn’t think of Lisa very often when I was growing up,” Sixx says. “I went through life just accepting the situation.”

I don’t understand this

After Sixx became an adult, he asked his mother how to contact Lisa. “I want to go see her. Please…I don’t understand any of this and I need to…”

Sixx called the facility where Lisa lived and talked to a staff person, who told him that her greatest pleasure was sitting in her wheelchair and listening to the local rock station. Because she was almost deaf, the volume had to be really loud. “That made me smile.”

The problem with procrastinating

Sixx called the home several times to check on his sister, but he never went to see her. Several years later, she died.

“The problem with procrastinating is that sometimes, it bites you in the ass,” he writes. “I got busy, I went on tour, I went through a divorce and I lost connection to that feeling that I had to make Lisa’s life right. And now she was dead.

“I have had to forgive myself for a lot of things in my life, but this was the hardest.”