I have been thinking a lot about terminology used to describe Maya and other people who have “special needs”, “disabilities” etc. To clarify my intention these are words I use to signal a need for support that is not usually part of mainstream design, thinking and planning.
Although I try not to get too bogged down in someone’s language and remain committed to focusing on their intention, language plays an important role in shaping the way we think and approach people in society. I realized a few months ago that I have become increasingly uncomfortable with the available terminology I can use to describe Maya. I like options and I feel the language around disability has very limited options.
You may notice that in my writing I tend to rely mostly on the term “disability”. I have settled for this term over “special needs” and many other proposed terms including “differently-abled”, when conveying that Maya has a functional need. I personally don’t care for the term “special needs” and feel it is disingenuous and forced. I also don’t love the term “disability” because I feel it often brings about all kinds of unnecessary judgments about the individual. For better or worse the term disability has allowed me to communicate that Maya requires support to participate in society. I can usually count on the person I am addressing ultimately getting this message even if it’s a bit buried among biased images and stories about what disability means.
I know many of you dislike the term disability intensely while others see it as a statement of reality. I understand that it may lead some people toward a value judgment about the whole individual and his/her capabilities. However, I imagine those same people would likely have similar judgments regardless of terminology. One thing I think many of us may agree on is that over time the term “disability” has gathered historical baggage with very negative connotations. I have been wondering if moving away from this term, or at least having the choice to, would also lead to a shift in how we think about people with individual support needs so that the focus is on their inclusion.
In the spirit of trying to give society more options around language that conveys a need for support I am introducing the term:
Individual Support Needs or ISN
To me this term plainly yet respectfully signals that Maya and other people require support that may not be typically offered through mainstream planning and design (I also toyed with the word requirement instead of need but it seems too long). It also has the benefit of familiarity with elements taken from both the term “IEP” (Individualized Education Program) and “special needs”. Most importantly, I feel it directs a conversation down a path of identifying which functional supports will allow an individual to be comfortably included in society. For example, if I were to tell an airline representative that my child has an individual support need or ISN, I would expect the response to be one focused on how that need can be met. Unlike disability, which has had many negative connotations throughout history, and special needs which to me sounds unappealingly cutesy, this proposed term is meant to be practical, honest, and mature.
What do you think? -Michele