Terms and Terminology
It’s nearly impossible to edit a newsletter like Neurotech Business Report without making reference to the individuals who are the intended recipients of neurotech products and therapies. So it caught our attention when we received an email from a new organization called RespectAbilityUSA with advice on how to refer to people with disabilities. Some of the advice is just plain obvious—don’t use the word “retard” or “retarded kid” to refer to someone with a cognitive or learning disability. But other suggestions touch on more subtle nuances of the English language.
For example, programs serving individuals with disabilities should not be referred to as “special needs programs,” And “wheelchair user” is far preferable to a term like “wheelchair-bound” or “confined to a wheelchair,” since these users do not see their device as confining, but liberating. Similarly, the word “handicapped” has fallen out of favor, perhaps because it is rumored to have come from the phrase “cap in hand” that was applied to beggars in a previous century. Terms like “accessible bathroom” or “accessible parking” are now preferred.
Although the missive from RespectAbility USA did not mention it, another pet peeve I’ve heard from some disability advocates is use of the word “patient” for someone with a disability. A patient is someone in the hospital, the reasoning goes. We’ve probably been guilty of this one in this publication, but only in the sense that an individual participating in a clinical trial is most likely in a hospital or clinical trial at some point, or at least under the care of a clinician. And it certainly sounds better than the word “subject” in this context.
Of course there is not universal agreement on all matters of terminology such as this. The author of the email concedes that many “blind people” and “deaf people” still choose that terminology for the same reason that organizations like NAACP still use the word “negro” even though that word fell out of favor.
Of course proper use of terminology is not the primary goal of the new organization. They want to see people with disabilities (PWD is an acceptable acronym) fully integrated into society, including the workforce. Today, 70 percent of Americans with disabilities are outside of the workforce. “People with disabilities don’t want special rights, they want equal rights,” said Jennifer Mizrahi, president of RespectAbilityUSA. “They want to be recognized by the strengths they have as human beings.”
As such, the goal of RespectAbilityUSA meshes nicely with that of neurotechnology researchers: to restore as much function as possible using prosthetic devices like cochlear implants, retinal implants, and motor prostheses.
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