Recently, during the 23rd annual California State University at Northridge Assistive Technology and Persons with Disabilities Conference, I received the Dr. Fred Strache Award for nearly three decades of writing about the benefits of Assistive Technology to people with disabilities. As I stood before the audience and accepted the award, I was proud of being part of history in the assistive technology field. One of my proudest associations in making history has been my association with the MS (multiple sclerosis) Collaborative. Oddly enough, I received the award during the National Multiple Sclerosis Awareness, March 9-15.
The MS Technology Collaborative is an alliance among Bayer HealthCare Pharmaceuticals, Microsoft and the National Multiple Sclerosis Society. The Collaborative’s vision is to provide people with MS information resources and tools to create a connection among technology, community, and treatment options so they can stay connected to the world.
The Strache Leadership Award was established and first presented in 1988 to Dr. Fred Strache. The award acknowledges the leadership of the recipient in the field of disability and technology. Specifically, the award acknowledges that the recipient continues to educate, to work with students as an educator and as a mentor, while remaining a leader in their respective field through publications, presentations and research.
One of the tools the Collaborative provides to people with MS is a monthly column on MyMSMyWay.com that describes various ways AT can assist people deal with the symptoms that MS causes. (Six times a year, I co-author a column with Microsoft’s Ellen Kampel on this topic). Some of these symptoms include temporary vision loss, slurred speech, memory lapses, dexterity and mobility loss. I am never happy to learn that anyone has a disability, regardless of what it is. However, I am happy when I can suggest ways that AT products can improve the quality of life among people with MS.
Since starting the column on MyMSMyWay.com, I have received hundreds of e-mails from people with MS or family members of people with MS looking for information on AT products or for advice in other areas related to MS. Some of these e-mails are so personal that they produce tears. One e-mail was from a mother of three children who wanted to know, “Should I tell my children that I have MS?” I can’t answer her.
I have also received e-mails from people with MS who say they have invented products to help people with MS and are looking for ways to market them. I answer to the best of my ability.
I have received many e-mails just thanking me for the articles whose information helps them.
When I started this project, I knew very little about MS. I know more now. For example, I did not know the number of people with MS in the United States. The MS headquarters in New York City estimates the number of people with MS at 440,000. Since I started writing the column, more than a dozen friends have told me they have MS. They came out of a closet. The learning experience has been enlightening and rewarding. In my scores of conversations with people with MS, I have never heard one express pity, anger yes, for either himself or herself. It takes courage for people with MS to deal with it moment-to-moment, hour-to-hour, day-to-day. Many people I have spoken who have MS have a good sense of humor, and I admire them for it. My daily struggles with stuttering are miniscule in comparison to theirs.
Besides the column, another tool on MyMSMyWay.com is the Snapshot tool, a personalized, interactive, Web-based program. Snapshot is an online diagnostic tool that asks people with MS a series of questions and provides customized technology solutions to help users live better with their MS.
Staying Connected Survey
A motivating factor behind establishing the column and the Snapshot tool was the Staying Connected Survey. “Staying Connected: An Investigation of How Technology Affects People Living with MS,” fielded in June 2007 among 2,390 American adults with MS, is the most comprehensive examination ever of the role of technology among people with MS. The survey demonstrated that many people living with MS who experience visual, dexterity, and cognitive challenges report that technology plays a vital role in helping them live with the disease. However, relatively few are using the assistive technologies that could help them overcome many of these challenges.
Some other findings include:
-- Thirty-three percent of respondents said they have trouble typing on a standard computer keyboard, but only 5 percent said they’ve made related adaptations, such as using an alternative keyboard or a voice recognition program.
-- Thirty percent said they have trouble reading text on a standard screen, but only 6 percent have made adjustments to the computer settings such as increasing font size or using screen magnifiers.
-- Nearly half (44 percent) of respondents have had to change their employment status, including switching from full-time to part-time or leaving work altogether, as a result of MS symptoms. Yet very few took advantage of adaptations that might have helped them remain in the workforce: only 12 percent asked their employers for more ergonomic equipment, tools, and furniture, and just 5 percent requested changes to the technology they use.
I am proud to be involved in this altruistic, historic program. From the e-mails that I receive, the collaborative effort of Microsoft, Bayer Pharmaceutical and the National Multiple Sclerosis Society is making a difference in the lives of people with MS. Other corporations should align themselves with national disability organizations to do the same.
John M. Williams has been involved in the disability area for 28 years. He coined the term assistive technology. To comment on this article write to firstname.lastname@example.org. His web site is ATechNews.com.
John Williams, recipient of the 2008 Strache Leadership Award