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.
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 Botoxģ 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: firstname.lastname@example.org; 517.334.8989.