A few weeks ago, a man wrote to me asking for help in reminding the skeptical community about those amongst us with disabilities. I asked him to write a guest post, since his own words would do a better job than me. Here’s what Chris Hofstader had to say:
Imagine that it is 1979. Imagine that you vocalize for a punk act and the truly hip recognize you as a regular at CBGB, Mudd Club, Danceteria and all of the other New York hot spots. Imagine that you also write creatively and involve yourself in various film and visual art projects. Imagine that the state has asked you to surrender your driver’s license. Imagine that the best ophthalmologists and researchers in the US, people at New York Eye, Ear, Nose and Throat, Massachusetts Eye and Ear and Johns Hopkins, have all told you that your vision will continue to deteriorate until you go blind. Now, imagine that a host of others offer you a cure and a way out of losing the last of your vision.
My profound vision impairment was caused by a genetic disease of the retina called retinitis pigmentosa (RP). Even today, more than 30 years after those exciting days in lower Manhattan, there are no known cures for RP available to the general public(1).
But, when I Google “cure retinitis pigmentosa” I hear my Macintosh say that there were more than 330,000 results. All of the top advertisements and search results offer a wide variety of remedies ranging from homeopathy to acupuncture to herbs to energy healing and on and on. Back in 1979, we had no google but the alt-med crowd found me, offered me hope that I might not go blind and I swallowed the bait and got stung by the hook.
From 1979, when I was 19 until I was twenty-six, I spent a huge amount of money trying every bit of quackery that came my way. I got acupuncture, enemas, homeopathic fluids, aroma therapy, all sorts of herbal remedies, macrobiotics and more. Each time I tried something new, I was convinced that, this time, it would cure me. Each time, my hope for a real remedy was torn from me. What else could I do? All of the best mainstream doctors couldn’t heal me and it felt inconceivable that I couldn’t be cured. Clearly, mainstream medicine was conspiring against me.
In college, I majored in computer science and took a whole lot of math because I enjoyed it very much. I really didn’t, however, understand the processes of doing real research and when an alt-med practitioner presented me with “evidence” I, searching for any sort of hope, vigorously embraced it, pulled out the checkbook and got down to some sort of costly procedure with no actual improvement in my vision or slowing in the deterioration of my retinas.
Today, few people with disabilities study science and, in the case of people with vision impairment, few learn any mathematics beyond high school algebra. Few members of this community can, therefore, tell the difference between high quality peer reviewed research and the scientific sounding language used to illustrate claims that are completely bogus.
At the same time, though, many people in the community of those with disabilities, want nothing more than to become “normal” and to have the ability to see, to hear, to walk, to run, to dance or read a poem in their own voice. Many of us will grasp at anything that seems to offer hope and the alt-med world will happily take the money of any of the desperate with a few bucks in their pockets. Along with offering false hope to people with fatal diseases(2), these so-called “health care professionals” will happily victimize people with vision, hearing, mobility, perceptual and virtually any other incurable impairment.
The community of people with disabilities needs the skepticism movement even more than the population at large as we have a higher likelihood of desperately seeking a way out of the symptoms that prevent us from participating fully in the world in general. Many people involved in skepticism, including the wonderful Rebecca Watson, founder of Skepchicks, encourage me to work on issues involving bogus alt-med cures for major disabilities.
Unfortunately, there are various aspects of the skeptical movement that unintentionally prevent people with some disabilities from participating. The biggest problem is that many science and skepticism web sites have some to many problems with compliance with the standards and guidelines available for universal accessibility(3). People with disabilities ranging from vision impairment to dyslexia to hearing impairments rely on assistive technology software which, in turn, needs web sites to be as compliant as possible with the guidelines. One can make a web site 100% accessible without changing a single bit of the visual appearance of the site. No one needs to compromise their site’s functionality in any way either – following the guidelines is very easy, can be done without a lot of effort and will provide a vastly improved experience for people who use AT to access information.
Many books published by authors from the skeptical community are not available in a format that people with various print disabilities can use. This problem is shrinking a bit for people with vision impairments and dyslexia and related cognitive disorders because many more publications show up on iBooks and/or Audible.com which we can access nicely(4). Authors who do not want to discriminate against people with print impairments should insist that their publisher makes the information available in at least one accessible format. Those who want to make their book especially accessible should contact www.bookshare.org to arrange to have their book in “publisher quality” added to this online library for all people with print impairments in the US(5) who subscribe to the service.
I am working to launch a new web site(6) to specifically address issues regarding science, skepticism and disability. I will be writing about issues related mostly to vision impairment but will also cover issues regarding other disabilities as best as I can. I am looking for people with different disabilities interested in dispelling myths about disability and shining light on bogus cures and other nonsense that people sell to take advantage of people who may be desperately seeking a path to normalcy. Even if you do not self identify as having a disability but want to help on this project, please join us as this is hopefully going to be a valuable resource for a community that is now woefully underrepresented in the world of skepticism.
About the Author
Chris Hofstader has been working professionally in the world of accessibility for about 14 years. He is the author of the Blind Confidential blog – a mixture of reality and gonzo fiction regarding blindness and access technology. He currently works for the Free Software Foundation (www.fsf.org), Trace Center for Research and Development (www.trace.wisc.edu), does various contract gigs and is writing a book for a major publisher about accessibility and Apple devices. Chris is 51 years old and he has a great 6 year old guide dog named X-Celerator.
(1) There are a number of very interesting science based therapies, mostly involving stem cells, in various states of trial around the world. Some of these studies are demonstrating tremendously encouraging results but we are probably at least five years from any of these being available outside of research efforts.
(2) If one uses google, they can search on the word “cure” followed by virtually any disease, including cancer, the virus and lots of other fatal conditions.
(3) There are a lot of places on the web that one can find information on making a web site accessible. The best place to start, though, is the Web Accessibility Initiative.
(4) Books published for Kindle and some other ebook services need to be explicitly “unlocked” to use the accessibility features. Without this unlocking, people with print impairments cannot read the information.
(5) Bookshare is a US based library that provides books for people with print impairment in a format that hey can use efficiently. It is US only as this is the only country that has specific copyright exemptions for people with print impairments. There may be programs similar in other parts of the world but the author doesn’t know about any in particular.
(6) Please do not look at my web site and assume that your site must be so drab to be accessible. I am building the site without any help from persons with vision but will be getting help to add photos and such relatively soon.