On Curing Disability, Part 2

Last week, I discussed some disabled people’s thoughts on curing disabilityImportantly, the word “cure” implies completely eliminating a condition. In practice, many disabilities are incurable, and medicine is often aimed at “treating” disabling conditions. This might involve a drug or an operation to reduce symptoms, slow the progression of a disease, or implant technology to restore function. It is often assumed that some treatment is better than none at all, or that any incremental reduction of disability is worthwhile. But sometimes, incremental treatments can have unintended side effects.

I was born with an incurable eye condition called Lebers congenital amaurosis (LCA). LCA causes loss of the eye cells that transform light into electrical signals our brains interpret as vision. Although the timing and intensity of such loss varies from person to person, I have a severe form of LCA, and was born with no usable vision other than the ability to see lights and some shadows. When I was diagnosed as an infant, it was made clear to my parents that there was no viable treatment. They had no choice but to accept and move forward. I was educated as a blind child, with no question over whether I would read using braille or print, because I can’t see even the largest print letters. I never faced the temptation to hide my disability because doing so convincingly would be extremely difficult. And I was spared the discomfort, convalescence, and risks associated with medical procedures.

Many of my friends and acquaintances who are blind have milder forms of visual impairment than I do. Some can read large print or navigate outdoors without a cane or guide dog. Conventional wisdom suggests that these people are more fortunate than I am, because they can see some things. But most of my blind friends who have some usable vision tell me of problems that I never encountered. They often had to endure multiple medical attempts to save their vision that were usually less successful than hoped. I continually hear stories of kids with “low vision” being taught only visual methods for reading, writing or getting around. When these visual methods become less effective for them, nonvisual alternatives like braille aren’t offered because they are considered not “blind enough” to benefit. Consequently, the kids cannot effectively read in either print or braille. My friends have told me stories of going to elaborate lengths to conceal their disability from others. They describe feeling stuck between two worlds, or like broken sighted people, rather than whole blind people. For many of these individuals, peace and self-acceptance came only when they began to identify with their disability, disclose it to others, and employ adaptations. These stories always made me wonder whether an incremental improvement in visual acuity actually translates into a meaningful improvement in quality of life. What if my friends’ parents and doctors had simply left their eyes alone? They may have lost their remaining vision, along with the social pressure to rely on an unreliable sense. They may have gotten stronger educational supports and found self-acceptance earlier in their lives.

Similar questions plague many parents of deaf children as they contemplate whether or not to give their children cochlear implants. On one hand, a cochlear implant given early in life can give a deaf child some usable hearing during the critical window for language development. On the other hand, this child will still experience a degree of hearing impairment and may struggle with typical spoken communication. Unfortunately, some educators and school systems are reluctant to teach sign language to an implanted child, and if this happens, the child cannot communicate well either orally or manually—in parallel to the literacy problem for kids with low vision. “Low-hearing” People with cochlear implants may also have trouble being welcomed into the Deaf community and reaping the benefits of membership in such a community.

Some research bears out the paradox that more “severe” disabilities can be psychologically easier than “milder” ones. One studyfound that totally blind college students rated their self-esteem higher than college students with low vision, a finding that’s appeared in some of my own research as well. In another study,brain injury survivors with more severe injuries (i.e., experienced longer comas after injury) reported more satisfaction with their lives than survivors with milder injuries. Importantly, the survivors with more severe injuries reported forming more new, positive relationships after injury, and they also had a stronger sense of identification with being a brain injury survivor. Although these survivors may experience more severe disability than the survivors with milder injuries, they benefit from the enhanced sense of identity as well as the new social ties that they developed after the injury.

In sum, this suggests that treatments which make a disability less severe, without removing it altogether, could have unexpected negative consequences for one’s psychosocial life. On the flip side, though, a person with milder disability who does also utilize alternative techniques could experience great benefit. My friends with low vision sometimes talk about how, once they develop skill and confidence using a cane to navigate, they can use their remaining vision to enjoy the scenery around them. By using braille or speech technology for most of their reading and writing needs rather than straining their eyes, they can use their eyes to enjoy watching an action movie or playing a video game. The National Association of the Deaf encourages families who pursue implants for their children to also teach them sign. Such bilingual children can then eventually decide when speech is the best mode of communication, and when sign is more practical for them.

Furthermore, some disabilities cause physical symptoms that, one may argue, are inherently unpleasant regardless of the social environment. Such symptoms might include pain, fatigue, nausea, vertigo or breathing problems. Although people can adjust to these symptoms to a degree, medical interventions that make them less severe or less frequent may be quite desirable.

Medical science has advanced a great deal, and will continue to advance in the coming decades. Some medical interventions can substantially improve quantity and quality of life. But their benefits always need to be weighed against their risks. In the case of a permanent disability, some of the risks are dictated by how the social environment responds to a partially treated disability. Will partial treatment affect a person’s eligibility for special education or vocational support services? Will the person still have access to disability communities? Will side effects from the medical treatment have an impact on the person’s ability to participate in school, work, or social activities in the short and long terms?

These are difficult questions, and they are even more difficult for parents making decisions on behalf of their children. It is critically important that these parents can learn about all the potential impacts of medical treatment, both from medical professionals and from people who have experience with the disability in question. A positive outcome goes beyond medical success, and depends on all parties working together. Service providers, such as school authorities, have a responsibility to support the whole person instead of following a narrow definition of disability. Disability communities also have a responsibility to extend their welcome to all people regardless of their level of disability or their treatment decisions.