In the medical community and in popular culture, it is often assumed that most disabled people wish to be “cured” or “healed.” Along with this assumption, it is assumed that preventing or curing disabling conditions would benefit society as a whole. Billions of dollars are spent every year on biomedical research intended to identify and remediate the causes of disability, while public health campaigns urge us to take actions (like getting our vision and hearing checked) in the name of preventing disability. Just last week, scientists announced the first successful attempt to perform genetic treatment on human embryos, modifying the embryonic DNA so that they could avoid inheriting a fatal heart condition. This breakthrough renews questions about the benefits and pitfalls of curing genetic disabilities. Is medical treatment the best thing for people with disabilities? For society as a whole?
I first became interested in this topic as a college undergraduate when I was majoring in Biology and Society, a biology degree program that incorporated study of the ethical aspects of emerging biotechnologies. Early in my studies, I noticed that disabled voices were absent from research and policy discussions, or at least from the ones I was reading about. The literature I was reading seemed to start with the assumption that curing disability was always a good thing. As it turns out, views about treatment in the disability community are much more diverse and complicated than that. In this week’s post, I want to discuss some varying opinions about disability prevention and treatment in the “ideal case”-how people feel about the prospect of having their disability completely and cleanly “cured.” Next week, I will talk about the realities of current medical treatments, and the unexpected pitfalls of treatments that only partially work.
At the end of my undergrad program, I surveyed about 300 legally blind adults. I asked them how likely or unlikely they would be to take a “magic pill” that would completely and instantly give them full sight if it were available. Although most of the participants said they would take this pill, about 20% said they would be at least slightly unlikely to take the pill. I found that people who had been blind for most or all of their lives, as well as people who both felt good about their blindness and who felt a strong connection to the blind community, expressed the least interest in the magic pill. When invited to comment, these individuals said things like “I have been blind all my life and it is part of me” or “I think blindness makes me who I am. Why would I want to change that?” These individuals simply didn’t see a compelling reason for treatment. Several participants also noted concerns about the challenges of “going sighted” and learning a whole new skill set. Among the participants who enthusiastically said they would be “very likely” to take the magic pill, reasons included the possibility of being able to drive or read print unassisted.
A partial treatment for deafness, the cochlear implant, already exists and has been on the market for three decades. But it hasn’t received a unanimous embrace from the deaf community. Some deaf adults, and parents of deaf children, have been satisfied with the results. Others, particularly those who identify with Deaf culture (note the capital D used to describe the culture rather than the lack of hearing), worry that widespread cochlear implant use could weaken Deaf culture, particularly by reducing the use of sign languages. Like the minority of blind participants in my study, these Deaf individuals do not see themselves, or Deaf children, as broken or in need of healing. Instead they see themselves and their Deaf brothers and sisters as carrying a proud heritage. In fact, the American Sign Language sign for a cochlear implant is sometimes made to look like the sign for a vampire, with two fingers behind the ear in a stabbing motion-not exactly a sign of appreciation for the technology.
In its position statement, the National Association of the Deaf emphasizes that a cochlear implant is “not a cure for deafness,” a comment highlighting its imperfect efficacy. As we will discuss next week, an imperfect treatment can sometimes make things harder than no treatment at all.
As one more example, the neurodiversity movement emphasizes accepting people with neurological differences instead of trying to remove those differences. In a position statement, the Autistic Self-Advocacy Network writes:
The disability rights perspective within the Autistic community is represented in the neurodiversity movement, which promotes social acceptance of neurological difference as part of the broad landscape of human diversity and seeks to bring about a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens. Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone.
Importantly, this statement implies that neurodiversity isn’t just “not a bad thing”; it’s actually a strength that can benefit society in an accepting social context.
Clearly, then, there is a range of opinions in the disability community regarding the prospect of “curing” disabilities. Many disabled people support disability prevention efforts. But once they become disabled, the idea of having that condition reversed is one fraught with implications for one’s way of life, one’s identity, and one’s community. In addition, any biomedical treatment can bring up a host of religious, political and philosophical issues; for example, a few participants in my study said that they would be open to a treatment for their blindness, as long as it wasn’t derived from embryonic stem cells, which violated their religious convictions. As treatments become more scientifically feasible, we will all grapple with the risks and benefits of particular treatments to choose what is right for us as individuals.
So, what do I think of all this?
First, I fully support medical treatments that can reduce the physical pain associated with many disabilities, because pain is, by definition, an unpleasant experience. I also support medical treatments for conditions that shorten a person’s life expectancy. And, I support innovations to remove the attitudinal, educational and access barriers that are the real causes of disability for people with physical or mental differences. I would love to see the federal funds, currently being spent on genetic research for my eye condition, instead spent to subsidize training for more qualified braille teachers so that all children who cannot effectively read print can learn braille early in their schooling. I would like to see funds diverted from biomedical research to the increased production of power wheelchairs, removal of architectural barriers, and funding of more sign language interpreters and personal care assistants so that people with disabilities can live and work in their communities.
Biodiversity is what allows any species to thrive under changing conditions. For example, genetic diversity among bacteria enables them to survive an antibiotic apocalypse. When we think of human diversity, we often think of differences in skin tone or facial features. But, ability diversity is perhaps the crudest form of human difference, and I don’t think ability diversity is ever really going to disappear. If something ever happens to our global energy supply, or a long-term eclipse strikes the sun, I can imagine it might help our species to have a few million people who are fully adapted to functioning in darkness. I can imagine that people who know how to communicate smoothly over loud noise, or people whose brains are wired for concrete problem-solving, can be a real asset to our species. As Temple Grandin, an autistic livestock breeder and self-advocate, wrote:
What would happen if the autism gene was eliminated from the gene pool? You would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done.
(Temple Grandin, as cited in Baron-Cohen, p. 491).
In the coming decades, medical science will advance, and these conversations will continue. It is imperative that disability self-advocates are front and center in conversations about treating, curing or preventing disabilities. We have the most to gain, and we also have the most to lose.