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.

Fifty years of reform

An important milestone occurred last week in the history of how our nation treats people with intellectual disabilities. Fifty years ago, on Feb. 5, 1963, President John Kennedy issued a “Special Message to the Congress on Mental Illness and Mental Retardation.”

President Kennedy signs the Maternal and Child Health and Mental Retardation Planning Amendments of 1963 and hands signing pen to Eunice Kennedy Shriver.

President Kennedy signs the Maternal and Child Health and Mental Retardation Planning Amendments of 1963 and hands signing pen to Eunice Kennedy Shriver.

In it, he made several recommendations regarding changes he felt were necessary in the treatment of people with mental illnesses. He also urged congressional action on many of the 97 recommendations issued by his President’s Panel on Mental Retardation.

This panel was appointed shortly after Kennedy was inaugurated and after it was revealed that he had a sister, Rosemary Kennedy, who had a disability.

Combating ‘mental retardation’

In this historic 1963 message, President Kennedy announced a “National Program to Combat Mental Retardation.” Many cases of “mental retardation,” he said, are caused by inadequate health care for expectant mothers and young children. To remedy this problem, the president proposed a greater emphasis on maternity care, especially for women in low income areas, and on infant health care.

He also called for an increase in community services and a move away from the use of “outmoded,” “distant custodial institutions.”

Eight months later, President Kennedy signed legislation that would put into place many of the recommendations he had made. A second piece of legislation, enacted shortly before the president’s death in November 1963, provided funding for research centers that would study the causes of intellectual disabilities. Also included was increased funding for community-based care.

The report card

At that time, more than 175,000 individuals with intellectual disabilities were housed in large, state-run residential facilities – most of them in remote, rural locations.  It would take about six years for that population total to decline, but it has done so annually ever since.

Today, around 29,000 individuals reside in these types of institutional settings. A total of 12 states and the District of Columbia no longer operate large residential institutions.

According to the JFK Library, “President Kennedy and his family forever changed public attitudes toward people with intellectual disabilities. Their influence on related policies and programs can still be seen today.”

In the 20 years after President Kennedy’s administration, Congress passed 116 pieces of legislation providing support for people with intellectual disabilities and their families.

We’re not done yet

Still, much remains to be done. In a monograph titled “Honoring Eunice Kennedy Shriver’s Legacy in Intellectual Disability,” David Braddock of the Coleman Institute at the University of Colorado pointed out that thousands of people remain on waiting lists for community services.

Family support services are sadly lacking nationwide and many students with intellectual disabilities are still educated in separate facilities.

But an enormous amount has been accomplished. We who care about and work with people with disabilities owe a great deal of gratitude to President Kennedy, Eunice Shriver and the Kennedy family for all they have done in this arena.

The Kennedy legacy

When most people think about the Kennedy dynasty, they think of politics and power and wealth. How could you think otherwise when three of the Kennedy brothers became U.S. senators and one became president?  One might also think of tragedy and heartbreak – with the assassinations of John and Robert and the deaths of Joe Jr. on the World War II battlefield and Kathleen in a plane crash.

Of course, when I think of the Kennedy legacy, I think of all these things. But I also reflect on all the family has done to advance the standing of people with intellectual disabilities. As is so often the case among people who take up causes, the Kennedys had personal experience with disabilities. John’s oldest sister Rosemary had a disability of some kind – the family always said it was an intellectual limitation. There is some debate about that diagnosis; nevertheless, Rosemary was the impetus for the family’s activism in the field of disabilities.

The Kennedys as activists

Rosemary’s younger sister Eunice prevailed upon John, when he became president, to establish the first President’s Committee on Mental Retardation. During his administration, he was the first president in history to welcome a person with an intellectual disability into the White House.

Later, Eunice and her husband Sargent Shriver founded the Special Olympics, providing athletic competitions worldwide for people with intellectual disabilities. Today, millions of athletes participate in sporting events in 170 countries.

The Shrivers’ son Anthony Kennedy Shriver built on their legacy by founding and building Best Buddies, an organization dedicated to creating one-to-one relationships and employment opportunities for people with intellectual disabilities. It is a volunteer organization, pairing college and high school students and adults with peers.

Best Buddies recognizes that people with intellectual disabilities are often excluded from society. By creating meaningful friendships, Best Buddies seeks to change public perceptions and to help people with intellectual disabilities live richer, more meaningful lives.

My dad was a Best Buddy

As I’ve mentioned in previous posts, decades ago, long before the founding of Best Buddies, my dad filled a similar role for his younger brother. He tried to include his disabled brother in neighborhood baseball games and he protected him from tormenters. Later in life, I became my uncle’s Best Buddy, taking him out for hamburgers and for rides in the park.

As I’ve learned in writing about my uncle, people with intellectual disabilities want the same things as everyone else – love, belonging, and a sense of purpose. I’m grateful there are organizations like the ones the Kennedys founded to help people with special needs find a place in this world.