Young girl with CP sits in her wheelchair, with a speech bubble that speaks to Individual Suppot Needs.

Leaving terms like “special needs” behind for more function/support focused language

Young girl with CP sits in her wheelchair, with a speech bubble that speaks to Individual Suppot Needs.

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

 

9 replies
  1. Donna Giles
    Donna Giles says:

    I really like this, Michele. In a way it’s terminology that we can all relate to, because don’t we all really have ISN’s of one sort or another? It means we focus on what a particular person, an individual, needs, as opposed to some set of generic assumptions about what constitutes “disability” and how we respond to it.

    As always, language shapes our perceptions and understanding of the world, and what you are suggesting means we widen our view and deepen our understanding, which is all to the good.

  2. Maren
    Maren says:

    I like it. I’m assuming you don’t like the term handicapped then? Honestly, I’ve been wondering how to explain my 2 1/2 year old daughter to other people as well. She is definitely less-abled as she cannot walk *yet*. At the same time, we have a handicapped parking placard for her. I have really struggled with what to say as well. I also like special needs preschool better than special education preschool due to the fact I have never really liked the term “special-ed”. Something to think about. Maybe I’ll start using your suggestion.

    • cp daily living
      cp daily living says:

      Hi Maren. I don’t care for the term handicapped either since it carries so much negative imagery with it. It also has fallen out of popular use and has been replaced with the term “disability” in Congressional and government documents, legislation, and programming, and by disability rights and support organizations. Perhaps alternate language to see what kind of response you get and choose what makes you comfortable but also allows you to be understood and have your child’s needs addressed. Thank you for sharing your thoughts.

      -Michele

  3. Jennifer Lyman
    Jennifer Lyman says:

    With regard to special education, our school chooses to use the term “student support services,” which I believe better describes what they do as well.

  4. JAY TAGUSTOS
    JAY TAGUSTOS says:

    I like it too Michele. It’s more forward looking in its’ context rather than simply describing the person. As a parent, I don’t feel comfortable when people refer to my daughter as a ‘special child’, as what most Filipinos are honestly accustomed to when referring to a child with inborn disability. I feel that the term, over the years, had become a label, rather than an endearment to the person.

  5. Kerry Mellin
    Kerry Mellin says:

    As an person with a new product to share with people who all have different abilities, I find myself respectively struggling to use the appropriate terminology for each individual… and each condition.
    I like ISN and can see using this term while showing my product and know that I’ve thoughtfully given the proper respect due.

  6. Kelsie
    Kelsie says:

    Out of curiosity (and as an occupational therapist), how would you use this term to refer to a group of people (or what term would you use to refer to a group of people)? i.e., a special education teacher teaches a classroom of children with individual support needs? Or, “I work with kids with individual support needs”? Right now I typically say “I work with kids with special needs”, when I explain what I do as an OT, but I too cringe at the “preciousness” of the term special needs, and if an individual tells me they have a different term they prefer, I use their term when around them.

    • cp daily living
      cp daily living says:

      Yes, Kelsie, I would use children with individual support needs. Maybe one day it will catch on and it can be shortened to ISNs. Thank you for taking the time to comment. Sorry, I had missed this. -Michele

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