By John M. Williams
Can you imagine a utopian world free of disabilities and disabling conditions? I can, and I believe one of the paths to this utopian world of able-bodied, healthy humans is stem-cell research, even though it's still very much in its infancy, and practical applications are probably decades away.
Stem-cell research tends to evoke deep emotions among people in the disability community. For many, it represents the key to a future free of impairments. If the research continues to show promise, "I'm praying every day that I will walk again someday and have a guitar in my hands, rocking and rolling, instead of wearing these arm guards and having a computer on my tray," says quadriplegic Alison Thomas, 36, of New York City. Thomas is unemployed and has written to President Bush asking him to release the restrictions on stem cell research.
Jerry Larrow, 38, of Sacramento, agrees. "From what I've read, stem-cell research holds great promise for curing diabetes. I am tired of taking insulin, and I am gradually losing my sight," says Larrow, who uses low-vision software in his work as a researcher for the city of Sacramento. He's considering offering himself as an experimental subject to test stem-cell research for diabetes, and he has contacted research labs and hospitals. In test procedures, scientists are working with turning stem cells into healthy pancreatic islet cells and possibly introducing them into the pancreases of diabetic patients.
Richard Kidwai, 32, of Savannah, Ga., sees great promise in stem-cell research for people with hearing impairments. A deaf computer programmer for a defense contractor, he says, "If stem cell research is successful, it may eliminate cochlear implants. It can eliminate Telecommunications Devices for the Deaf [TDDs]. Hearing aids, too." He's waiting for a reply from the National Institutes of Health and Johns Hopkins University on their opinions on stem-cell research's benefits to deaf people.
Given such strong feelings, it's surprising to me that some manufacturers of assistive-tech products aren't more interested, too. One maker of augmentative-communications product I spoke with doesn't see the results immediately available. "It will be many decades before the miracles of stem cell research are available to the public," he says. "And so why should I worry?"
True, but the medical opportunities for stem-cell research are boundless. These cells may be able to control or eradicate not just diabetes but also replace neuronal tissue damaged by strokes, spinal-cord injuries, ALS, Alzheimer's, and Parkinson's diseases. They may also provide a ready supply of skin tissue for burn victims and strengthen damaged arteries and hearts with lab-grown cardiac tissue. We know biologists have found stem cells in umbilical-cord blood, and these cells have proven useful in combating blood disorders including leukemia.
And we know that stem cells from embryos are virtual miracle cells that can be grown into any type of tissue. Researchers have reported progress in turning them into heart, blood, muscle, nerve, cartilage, skin, and bone cells. Some doctors believe the results from stem-cell research can reduce the medicines we all consume and prolong human life.
Nevertheless, some issues surrounding stem-cell research raise alarms among many in the disability community. Don't forget that the value of life -- all human life -- is an especially compelling principle for the disabled. The idea of euthanasia for severely impaired infants in pursuit of some allegedly higher good -- whether it be to spare the child and the parents from a life of intensive care, to obtain stem cells, or for some other reason -- is especially repugnant to those in the disability community. None of the people with disabilities I spoke to favors abortion or euthanasia to obtain stem cells. "I can't see destroying a life to enhance life," says lawyer Maria C. Rodriquez, 27, a paraplegic who lives in Princeton, N.J.
However, if a fetus dies prematurely or a person dies from natural causes, many believe that their stem cells should be used for research. In this regard, most people with disabilities that I spoke to for this article would go farther than President George Bush. "Stem cells taken from embryos developed in a laboratory don't constitute a person," says Olga M. Falls, 25, of Charlotte, N.C. A consultant on family care and disability issues, Falls uses a wheelchair.
If stem-cell research can assist in eradicating or lessening the physical and mental restrictions resulting from a disability, we must proceed with the research. Worldwide, people with disabilities are still often considered to be less than whole people. Stem- cell research may be a key to eliminating physical disabilities entirely. As such, we should not shrink from doing what will advance our knowledge and therefore add to our quality of life today, tomorrow, and for centuries.
One subject of special interest to me is that no one I spoke to working in stem-cell research sees it a cure for stuttering. I'd volunteer for stem-cell implantations for a stuttering cure in a heartbeat.
Williams writes Assistive Technology every week, only for BW Online.
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Edited by Douglas Harbrecht