Life on Wheels (84 page)

Who will know that you are participating in the study? Is your participation anonymous or simply confidential?

What risks are already known about the substance or therapy being studied?

What are the potential benefits the study hopes to demonstrate?

Are there any results already known about the drug, good or bad?

How many others are participating in the study?

Will you need to go off of your present drug therapy?

What, if any, portions of the study will you need to pay for?

Who will pay for treatment if you should experience an adverse reaction?

Who is financing the study?

What forms will you be asked to sign, and what legal obligations do all the parties agree to?

For the foreseeable future, we will remain a human community with a significant population of people who have physical disabilities of various sorts. Regardless of the modern miracles that continue to be pursued by science, everybody is entitled to full inclusion according to their true capabilities. We need to support research that can improve quality of life but not at the price of continuing to cast people with disabilities in the role of damaged goods. Maybe some people will walk again, maybe not. Either way, we mustn’t let any hope we place in research prevent us from continuing the progress disability advocates have made in removing social and physical obstacles that now prevent too many people from living to their full potential.

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A home should be flexible enough to handle everyone’s needs, without people finding themselves trapped by obstacles or unnecessarily dependent.
Building for a Lifetime,
by Margaret Wylde, Adrian Baron-Robbins, and Sam Clark, documents the results of research conducted at the Institute for Technology Development under a grant from the National Institute for Disability Rehabilitation and Research.
¹
It details the concept of the Lifespan home, which not only accommodates people with disabilities, but considers the needs of all family members at all stages of life and health, including children and elderly people.