Science, Skepticism and Disability
Over the past few years, I have become increasingly interested in the science and skepticism movement. For those unfamiliar with these positions, we try to promote real scientific inquiry and shine light on bogus, pseudo-science. I believe this world view is essential for people with disabilities for a number of reasons, most especially, it is important that we illustrate the completely bunk set of cures for otherwise incurable diseases and disorders that may cause disabilities. Recently, I have started working with some friends from within this movement on a web site dedicated to illustrating which claims of possible remedies for various disabilities are in fact just scams and to dispel various myths regarding disabilities. As with many projects of this sort, it may never actually get off of the ground but we do already have a small but growing crew of people who want to be involved and we seem to be building up some steam on this project. If you find this post interesting and would like to get involved, please write to me offline, I'm especially interested in hearing from people who have disabilities other than vision impairment.
My blindness was caused by retinitis pigmantosa (RP), a disease with no known cure. There has been real, science based medical research on this and related retinal diseases and there have been some promising results in the laboratories of great centers of study around the world. The world of science based medicine, though, is making no claims of actual cures yet and the procedures involving stem cell based retinal transplants are not yet available to the general public.
In preparation for this article, I googled "cure retinitis pigmantosa" and was presented with the phrase, "about 264,000 results" and found a number of advertisements above the actual search results. The first ad was titled,, "Retinitis Studies," and was a link to a very sketchy looking group that claimed to be doing some research on something not entirely related to RP, their site is also partially inaccessible so I doubt if they are looking for anyone who actually knows much about the world of actual blindness. The second ad had something to do with acne so was a false positive but the third ad was titled, "Retinitis Pigmantosa Treatment," I found this title interesting enough to go to the site which is owned by a group that calls itself, RightHealth which seems to be a healthcare search site which found both real and pseudo-scientific items and did nothing to distinguish between the two.
Some of the search results were to legitimate scientific sources that stated that there was no cure for the disease but discussed both retinal transplants and various experimental gene therapies. These show promising results and offer hope for the future if research into these areas continue to provide what appear to be positive results, the rest, however, offered nothing more than pseudo-science and false hope.
When and if we launch our web site, I will do a more in-depth study of the scam artists. For now, though, let it suffice to say that the web sites that promise actual cures do so with the same flawed claims as most of the world of bogus "alternative" medicine. Acupuncture, homeopathy, , energy healing or any of the panoply of supposed "cures" I found are all entirely without basis in reality. None of these so-called treatments do anything beyond providing a placebo effect for any sort of malady, including RP. Some people will ask, "What's the harm and I answer, people who have a degenerative disorder, especially one that will result in blindness or some other major disability, are often desperate. People, like me when I was in my twenties (roughly 25 years ago), are often willing to try anything and spend every dollar they can get hold of to avoid blindness. The harm is that these scam artists trade dollars for false hope and, as we all seem to acknowledge, people with disabilities can often not afford expensive medical procedures that do work and these purveyors of junk science victimize individuals who are willing to try almost anything to avoid the dreaded possibility of having to live with blindness.
Please do not waste your time sending me claims that alternative medicine does actually work unless your comment is accompanied by a pointer to an article in a well respected peer reviewed journal. No, "Yoga Journal" or other publications that promote pseudo-science and publish neither peer reviewed studies nor the methods used to research a claim will not convince me. The only thing that "alternative" medicine offers is an alternative to actual efficacy.
I am not an expert in medicine or alternative medicine. I will take my lead from blogs like Steve Novella's "Science Based Medicine" and Rebecca Watson's "Crap Based Medicine." These two cornerstones of the movement are on the popular podcast, "Skeptics Guide to the Universe" (SGU) and Rebecca is the leader of Skepchicks, a women in skepticism group. Along with these two people, I will draw from real scientific publications that discuss alt-med and will try to find as much information on both sides of this debate. If anyone claims that alt-med doesn't have the money to do research, I will point out that the sales of alt-med products is well into the billions of dollars per year and I believe that they can and should be required to spend a few hundred million per year proving their positions. Alternative Medicine is big business and should be required to work the same way as legitimate science and medicine. I also believe that such substances and procedures offered by practitioners of alt-med should be subject to the same approval processes as real, evidence based medicine and that people selling false hope should be charged with practicing medicine without a license as there is no legitimate governing body to regulate these procedures as, to do so, would be endorsing a scam.
I can be convinced to change my position on various types of alternative medicine if the aforementioned articles can be provided. I am opposed to con men taking money from people who feel that they have no real alternatives. I am not opposed to any specific practice if it can be demonstrated to have a real positive effect in a double blind, controlled study. I am not religiously against alternative medicine, I've just been shown zero credible evidence that it does anything beyond a placebo and I believe that I can say with absolute confidence that sugar pills and plain old water will not cure RP or any other disease that leads to a major disability.