Duncan Wyeth - Waging War on Disability Concerns
By Judith Philipps Otto When Duncan Wyeth, executive director of the
Michigan Commission on Disability Concerns, investigates issues of
concern to those with disabilities, draws thoughtful conclusions,
and makes his recommendations, he tends to truly grasp the
substance and the heart of each case. For Wyeth has an
advantage--at age 59, he has lived with cerebral palsy all his life
and faced firsthand many of the difficult situations encountered by
people with disabilities. His success in overcoming those
difficulties, earning an advanced education, and ultimately
achieving a position that allows him to assist others, is something
he modestly deprecates.
 "I certainly was fortunate to have parents who
always allowed me to participate in a full range of activities as
if I had not had a disability," Wyatt says. "I was born in 1946 and
I know from my parents that was not a friendly time."
In those days, when a child was diagnosed with cerebral palsy,
many parents received advice which, unfortunately, many still
receive today: "Why don't you put your child in some type of
institution or extended-care setting?"
"It was not a particularly optimistic long-term evaluation,"
Wyeth comments wryly.
Throughout his life, because of his spastic cerebral palsy,
Wyeth was aware of others in his age group who had undergone
surgery. "My parents were often told, Why don't you let us cut
Duncan's tendons and the muscles in his forearms so his hands will
look more relaxed--or in his legs, so he won't be on his
toes and he'll look more natural?'"
Unfortunately much of that surgery, rather than improving
function, actually had just the opposite effect. It was largely
cosmetic in nature, designed to help the child appear more normal.
Once those tendons and muscles were cut, the limbs were truly
nonfunctional and virtually useless. "Once again," says Wyeth, "my
parents just felt that this didn't make sense. Why couldn't
physical therapy and exercise have the same result?
"I remember that between my third- and fourth-grade years in
elementary school, I helped my dad landscape the yard and put in
patios in order to earn money for my first real bike. I
had had a bike before, of course, but I was the only kid in my
neighborhood to have training wheels in first grade. I needed them
for balance. But you know, it was worth the stigma of training
wheels, because that bike was the tool that allowed me to keep up
with my playmates. I could never keep up with them on foot. That
bike was the tool; it was the technology that allowed me to cover a
much wider area, to go to the playground, to keep pace."
As an unanticipated dividend, Wyeth's mother heard the doctor
conducting Wyeth's fall physical exam comment in amazement, "Mrs.
Wyeth, this is so wonderful! You were able to keep Duncan in a
physical therapy program over the summer!"
When she denied this, the doctor protested, "Well, look at him!
He's not up on his toes, his muscles are more extended, he is
walking more on his heels--what caused this?"
The answer, of course, was Wyeth's beloved bike: "I had gotten
on the bike and ridden it everywhere! That was my physical
therapy--that constant repetitive motion of turning those pedals
and stretching out and using the muscles. Best of all, it was fun!
It wasn't the dreaded chore that going to physical therapy would
have been; it was something I was eager to do: Can I go ride my
bike now? Please?'"
The key to compliance is enjoyment, Wyeth points out. The more
fun the activity, the more likely people are to participate and
continue it over time.
More Disadvantages for Disabled
The 2004 National Organization on Disability (NOD) Harris Survey
of Americans with Disabilities found that people with disabilities
also are disadvantaged concerning employment, annual household
income, education, independent transportation, healthcare, and even
socialization. Imagine how the loss of income and access to
transportation would inevitably change our lives, especially in
terms of how we socialize, the things we pay money to do, and
things that keep us physically and emotionally healthy.
Wyeth modestly raises the issue concerning the direction of his
own life. Supposing that if he had not earned a bachelors and
masters degree and had been unemployed for five years or more, he
points out, "&If I were getting SSI here in Lansing, the
average fair market value for a one-bedroom rental unit would use
up 95 percent of my monthly Social Security allowance. So I'd wind
up living in substandard housing, and I probably wouldn't eat as
well. What does that do to my self-concept over time? What does
that do to my abilities to cope with health issues and to interact
with other people?
"Although I began with a physical disability, maybe if I were
told over and over again that I'm crippled, disabled, unemployable,
etc., I would also develop a very negative self-concept and begin
to feel hopeless. The poor diet I could afford would not do any
good things for my health, and I'd become much more susceptible to
substance abuse."
That's the scary reality--and age complicates the situation
further still.
"I came from a nice solid, middle-class lifestyle background,"
Wyeth recalls gratefully. "Growing up as a person with a
disability, I had many advantages that a lot of folks don't have.
But at 59, I still have the issues of mobility, dexterity, and
balance that I've always dealt with, now complicated by the aging
issue." Recent statistics show that as many as 50 percent of people
over 65 have some type of physical, psychiatric, or cognitive
disability, he observes.
Changed Times?
Wyeth would like to believe that the trends he faced as a child
are changing. "Obviously because of laws like the IDEA [Individuals
with Disability Education Act], state laws, and changes in
technology, a child with my level of disability has a much, much
higher likelihood of being included in a classroom with
non-disabled students in 2005 than I would have had in 1955--50
years ago. Our schools are physically more accessible now, and we
have a whole cadre of teachers who have received specialized
training and special education. Unfortunately, it is also true that
many of our teachers are not trained in special education,' but are
headed for the normal' high school classroom.
"Those individuals are not likely to have any formal training or
exposure to students with disabilities. So when those students pop
up in their classrooms, they have the same emotional baggage that
everyone else has. It may be an attitudinal barrier of
misperception or something learned in their past, but there are
still a lot of issues."
Wyeth confesses to continuing worry over the education issue.
Although his state has a large special education budget, very good
legislation and support, Michigan still reports a dropout rate of
nearly 45 percent for students with disabilities--more than twice
the national average of 21 percent. And, as Wyeth notes, these are
only the students who have been identified or diagnosed as having a
disability.
"I don't care if you've got a disability or not," Wyeth says
bluntly. "If you drop out of high school in 2005, your economic and
employment future is not going to be good!"
Digging Deeper into Real Problems
Although Wyeth identifies himself as a middle-class government
bureaucrat, living a middle-class lifestyle, he is part of a small
minority--only about 25 percent of the adult population with
disabilities is working full-time or part time.
"If I went into a rehab program right now," says Wyeth, "with my
very visible disability--visible in my physical mannerisms and in
my speech pattern--people would note that I have cerebral palsy,
but they might not ask other important questions relevant to my
employability: Do I drink a lot? Am I a drug user?
"As a result, even with proper training I may not hold that
job--not because I have cerebral palsy, and not because people
haven't accommodated my dexterity issues or my ambulation issues.
It may be because of my substance abuse, which may be on paper
labeled a secondary disability,' but in reality it would be the
primary disability in terms of why I was not a success in the labor
market." As we attempt to intervene, to provide training, medical
care, and support to those with disabilities, Wyeth recommends that
we address this possibility as well.
He also points out that the most visible disability is not
necessarily the most dangerous. He described a friend with a
serious lifelong lung condition who requires constant medication.
Because she is an attractive and successful professional, an
audience presented with these two candidates would immediately
assume that Wyeth has by far the more serious disability.
"In fact," he clarifies, "her disability is life-threatening on
a daily basis. If she doesn't get her meds or if her car quits in
cold weather and she has to hike some distance--very bad news. I
could do it with my cerebral palsy. I'd fall a lot, but it's not
going to kill me. In her case, however, it could be fatal."
Discover What Works
Wyeth cautions that while some new developments promise help for
those with cerebral palsy, each individual responds differently to
a given procedure or regimen. What works for one may not help
another. Dorsal rhizotomy--a "controversial invasive
procedure"--involves surgically severing nerves at their connection
to the spine. "There have been some documented cases of significant
and positive effects, but there are also some cases where it's had
a very negative impact," Wyeth adds.
His own experience earlier this year with Botox®
injections in his calves made a noticeable difference, reducing the
tendency to trip and reducing the amount of toe-in he had
previously experienced. "The Botox injections worked very well for
me. But Botox has had negligible impact for a friend who is in his
mid-60s."
Botox also can be used as an analgesic as well as a muscle
relaxant, and Wyeth himself noticed significantly less pain while
using it. However, he points out that not only is the perception of
pain relative, but also people whose disabilities create chronic
pain are perhaps more accustomed to handling pain and are thus less
likely to report it, a factor for health professionals to
consider.
Sports as Salvation?
Based on his own early and successful experience with athletic
activity, Wyeth remains a strong proponent of involving persons
with disabilities in sports. Although this is often regarded as
frivolous in comparison to helping persons with disabilities obtain
education and employment, Wyeth cites the beneficial physical and
psychological effects on returning amputee veterans who are
equipped with prostheses and promptly involved in challenging
sports such as skiing and running.
His conviction is catching on, as support for the Paralympics
grows steadily and a numerous new associations and support groups
for disabled athletes continue to appear.
Duncan Wyeth can be contacted at e-mail: wyethd2@michigan.gov; 517.334.8989. 
Table Of Contents - May 2006
|
