Written by: Terry Boisot (10/1/01)

Society is more inclusive than what was considered possible only thirty years ago. People, regardless of the level of their disability, are included in their neighborhood schools, grow up with their neighbors, live in their own homes, and work in their communities, demonstrating every day what is possible. However, this kind of life is not common enough.

Much of society still sees “Down Syndrome,” “cerebral palsy” or “autism” first, then neatly packages them up into a box with millions of others and labels it “people with mental retardation”, “the retarded,” “the developmentally disabled” or “the disabled,” severely limiting potential.

Self-advocates have used their fortitude developed from the longing to be free, and found their way out of institutions and the clutches of parents who kept them protected and isolated at home. Yet, too many people remain isolated and segregated because society’s labels and pity.

Fifty years ago parents blazed trails that eventually brought public education into the lives of our children. Parents today ride on the coattails of this success and work hard to create inclusive neighborhood schools so their children will grow up in neighborhoods and communities that embrace and expect their participation.

It’s exhausting and a full-time job, because labeling often develops attitudes within education that are difficult to break through. So, for some parents inclusion is only a dream.

There are huge numbers of advocates in the world. People with and without disabilities have devoted their lives in big and small (but important) ways to creating inclusive opportunities in employment, recreation and everyday life - one person at a time – imaginatively and with a commitment that never falters.

However, society’s labels are the most ominous barrier advocates face. Millions of dollars are poured into institutionalization, because labels create an image of a future that holds limited possibilities, public policy is inadequate and community services and supports are under-funded.

Some things haven’t changed enough in thirty years.

My son Ben, who wears contact lenses and hearing aides, and uses a wheelchair, communication cards, adapted computer switches and software, is “normal” to his family. To the 832 kids at the neighborhood junior high school, his teachers and his principal, his only label is “Ben”.

So why is he “normal” while his counterpart living in an institution gets a label of “profound mental retardation”?

I don’t get it, and society is confused as they are consistently presented with at least two schools of advocacy.

A number of advocates - people without labels - travel up and down the halls of their state capitols and our nation’s Capitol visiting their legislators, and advocate as a voice of the “retarded”. They are promoting pity and segregation.

Other advocates travel up and down those same halls and advocate with and on behalf of their fellow human beings – promoting participation, freedom and possibilities for their future.

I asked three people, all active in the disability rights movement, how labels have impacted their lives. Here is what they said:

“Labels have hurt me by putting me in special education classes, segregating me, not giving me the freedom to go and do whatever I want. People think I’m stupid.” – Liz Obermeyer, People on the Go, a Maryland self-advocacy organization.

“ It is easy for someone who isn’t in our shoes to say we need a label. To me it’s the same as being called a ‘wetback’ or a ‘nigger.’ People think we don't have emotion, fall in love, get cancer, mental illness, or grieve and feel sad." – Connie Martinez, Capitol People First, Sacramento California.

“Our dreams for Rob are no different than what we have had for our other sons – to be safe, grow, build a bigger network of friends, and be a respected peer. Instead some people, in a system meant to support Rob in achieving these dreams, can only see his Down syndrome and have few expectations. At fifteen he is regressing, and it is paralyzing to watch.” – Patty Moore, Family Resource Center, Santa Barbara, California.

Here is what the same three people said about being in places where labels don’t matter:

“Integrity, freedom and loving life.” – Connie Martinez

“I don’t have to tell anyone when I decide to go to the mall.” – Liz Obermeyer

“Rob participates in water polo with the kids at school and his spirit and attitude about life are high.” – Patty Moore

I’d like to leave you with a quote from my friend Sue, whose teenage son, Tyler, has been totally blind since he was a toddler:

“How many of us make judgments of a person based on their appearance? Tyler is not blinded by a person’s looks and sees the true heart and soul of what he hears.”

Terry Boisot is the parent of a child with disabilities, serves on the board of directors of Alpha Resource Center of Santa Barbara and The Arc of the United States. She is concerned about all disability matters and welcomes comments at tboisot@thearclink.org