Archives for March 2013

Foster Grandparent Program makes its mark

Foster Grandparent Program

Courtesy Corporation for National & Community Service

It’s been almost three decades since I left the field of journalism, where I worked as a reporter for newspapers and two wire services. Most of the stories I covered in my 12 years in the field were somewhat routine and I forgot about them as soon as the newspaper hit the newsstand the next day. But a few will forever remain etched in my mind.

One of the most memorable was on my first job at the Lubbock Avalanche Journal. I was assigned to write a feature story about the Foster Grandparent Program at Lubbock State School.  This program was started during John F. Kennedy’s presidency – not surprising, since he did so much to improve the lives of people with disabilities.

Seniors volunteer

The federally backed program, which is still in operation, recruits senior volunteers to work with school children and those with special needs.  Most of the seniors volunteer their time, but those with financial need are paid a stipend.  Such was the case with the senior lady I interviewed that day in the mid-1970s.

I don’t remember her name, but I do recall she looked rather grandmotherly. And she was completely devoted to the young girl she was assigned to.  They met me on a veranda outside one of the state school buildings one spring afternoon. And the foster grandmother shared their story with me.

Her teen-aged companion (I don’t remember her name, either) could not speak and was in a wheelchair. She could not control her arms or legs, all of which jerked in spasms. But she smiled and seemed to revel in her time with her “grandmother.”

This foster grandmother was open about the fact that she got paid to be there; it was one of her only sources of income and she needed the money. But she made it equally clear that she adored her young friend and loved spending time with her. I got the feeling that even if there weren’t any monetary compensation, she would be at Lubbock State School every week anyway.

We all have gifts to share

This lady discovered what I found out years later when I would spend time with my Uncle Melrose – that people with disabilities have much to offer. We just have to take the time to be with them and open ourselves up to receiving the gifts they have.

Wolf Wolfensberger, the psychologist and academic who devoted his life to advocating for and researching people with disabilities, said these individuals have a number of strengths to share:

  • A natural spontaneity
  • Generosity and warmth
  • Honesty and a trusting nature
  • The ability to engender gentleness, patience and tolerance from others

I certainly found all these traits in Uncle Melrose. I’m betting that my foster grandmother of so long ago found the same things in her young friend.

[Note: See previous post on the Foster Grandparent Program.]

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.”