What constitutes a disability? In recent weeks research conducted in the UK has suggested that we may be on the road to curing deafness. A study published in Nature has shown that, "...when transplanted into an auditory neuropathy model, otic neuroprogenitors engraft, differentiate and significantly improve auditory-evoked response thresholds." In other words scientists were able to restore limited amounts of hearing to deaf gerbils through the use of stem cells.
Now, this research is both interesting, and potentially incendiary. The obvious issue is the use of stem cells by the research team. Research with human stem cells has been a hot-button topic for the past several decades and the report in Nature will no doubt fuel that fire.
However, there is also at least one other more obscure -- but no less interesting -- ethical issue raised by this research. While it may not be afforded the same number of column inches or barrels of ink as the ethics of stem cells, it is certainly worth an informed and spirited discussion.
The issue is this: is being deaf a disability? Our natural and immediate instinct may be simply to say yes: a deaf person is denied the use of one of his or her senses, thereby fitting nicely into Webster's definition of the word disability.
Of course in reality the issue is much more complex. Many deaf people do not consider their lack of hearing as a disability at all; in fact some see it as a preference. This school of thought -- that "designates" itself by using a capital D instead of a lowercase d -- says that being deaf isn't a burden, but in fact a blessing. There are some deaf couples who, if given the choice, would want their child to be born deaf too.
The question here is not whether we can cure a condition or even whether we should cure a condition. The question is whether being deaf is a "condition" at all. Why do we, who can hear, presume that those who cannot would want to? If someone likes the way their his body is, and isn't harming anyone else, then why shouldn't he be allowed to live out their his own definition of a full and happy life?
One might ask in what way is a deaf person currently not allowed to lead a full and happy life? Obviously no one is telling him that he must be cured. However, his dignity and self-respect are being threatened, because although he judges himself as "normal," his society judges him as "impaired," and that prevents him from living a fulfilled life.
Furthermore this question becomes much more convoluted when the idea of bringing a deaf child into the world is discussed, but at least for consenting, rational adults it seems fairly clear-cut.
What this issue points to is the need for a fundamental reassessment of the way we talk about, and act towards the disabled. There is the assumption that by being physically different they are somehow at a disadvantage, that because of the loss of a sense or an appendage there is also a loss of ability -- and this may not necessarily be the case. Some people may choose to try to "cure" their condition. Others may not. But irrespective of the choice, there shouldn't be an assumption by society that a disabled (or in this case deaf) person has less to offer or is less fulfilled.
An important thing to keep in mind is that the idea of being normal is a relative one. We are only normal because we conform to the majority. However, there is no single gold standard that we can point to. For better or worse normalcy is subjective. It is constantly shifting. We have only to look at other medical and public health issues (the awareness and treatment of HIV/AIDS being one) to see evidence of this.
In the case of the disabled, perhaps our perception has been shifting for the better. Just several weeks ago the Paralympic games were held in London. While they may not have generated the same international fervor as the Olympics they were still the best attended (over 4,000 athletes representing 164 countries) ever, and pulled in record viewing figures.
Nathan Risinger is a research assistant at the Johns Hopkins Berman Institute of Bioethics. He is interested in the concept of free will, especially in relation to the possibility of objective moral truths.
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