Sunday, May 16, 2010

Standard Needs

Others ask, sometimes rather caustically, why I refrain from using the term “special needs” in reference to my daughter.  Rather, when a nod to her diagnosis is required for context, I use expressions like – my daughter with differences, or my girl who communicates alternatively and who is intellectually original, etc.  I am accused of being too politically correct.  Another parent informed me that my choice of words is false diplomacy, as though I am gingerly engaging the enemy (the dreaded ‘one not personally impacted by disability’) as a means to an end.  It has also been suggested that my choice of words is too vague to describe my daughter, that others cannot get a clear picture.  But I don’t attempt to draw a clear picture with my words.  Addie will demonstrate who she is herself, if she chooses to.  And does ‘special needs’ give a clear picture of anyone?  Does it sum a child up?   And is it really her needs that make her diverse?

I took my older daughter to hear Keith Jones speak a few months ago.  Cate is 10 years old, but had enough desire to hear Mr. Jones to withstand the 40 minute car ride each way, locked in with 3 mothers yammering about IEPs, accommodations and hippotherapy.  My daughter is a big fan of the film Including Samuel in which Mr. Jones is featured, often quoting him in conversations with kids and adults alike, as she furthers her own agenda for her sister and the meaningful inclusion of any and all people with differences.

My fifth grader - one of the 3 children in an auditorium full of adults - listened and laughed, for Mr. Jones is as uproariously witty as he is enlightening on the subject of disability rights, revolution and social justice.  At the end my brave girl raised her dimpled child’s hand.  Her voice was paradoxically both timid and bold as she thoughtfully inquired, “Why do you think, Keith, that it’s taking the world so long to understand that everybody is kind of the same?  We’re all just people, we all have the same needs.  Why is it taking so long to get it?”  The way she asked, it was clear she expected new understanding that she could act on, an answer that began with the word “Because….”

Mr. Jones permanent smile straightened for a split second as he replied “Out of the mouths of babes.”

Of course, I could not leave it and I asked my daughter later about her question.  She elaborated further that since everybody’s needs are special to them, nobody’s needs are really special.  If we keep thinking somebody has special and mysterious needs, we think we cannot give that person their complicated needs, so we don't even try.  She firmly attested that we all need precisely the same things.  We worked out a list together - thinking of her sister, thinking of ourselves, thinking of others - to test her theory.    On the list of needs we all have: a full belly, shelter, health, safety, love, meaningful contributions, challenge, somebody to talk to and trust, and to do a few things that make you proud.  Some people can get these things in traditional ways.  For others, different tools are used:  feeding tubes, medical intervention, assistive technology, creative teaching, therapies, facilitated social opportunities to practice,  open-minded and willing employers…

Cate decided, yes indeed.  The means may differ, but the needs themselves are pretty standard for all of us.  

I do not use the term "special needs" for no other reason than because my children and my experience have rendered it meaningless.


  1. I was just thinking about this today and wondering how we got here, so heavy with the terminology. You've explained things very nicely and your young girl is a wise one, no? I'm not sure how I feel, though, about not differentiating my daughter's needs from her brother's -- the use of the word is often just a practical use -- to get her certain services, etc. It's also a way to explain quickly the differences -- just today someone asked me why I don't let my fifteen year old daughter babysit my nine year old son. I said, "Because she has special needs." That way, I didn't have to go into the nature of her disability -- the cognitive and physical differences, the seizures, etc. -- I'm babbling on here basically just to say that I use the term "special needs" in a practical sense although your post has made me think about whether I over-use it.

  2. Yes, Elizabeth, there certainly are times when referring to differences is required for context, for practical reasons. In these cases, I say "Addie has developmental differences." It just feels like "special needs" points in the wrong direction for distinction and also sort of makes people feel removed, and even unqualified to find out more, like the needs themselves are so specialized and complicated that they can't even begin to understand them. I think it stops people from inquiring further and allows them to draw conclusions that may have nothing to do with who my child is. Personally, I never mind getting into the nature of Addie's originality with people who are open to hearing it, people who are willing to learn about it so that they can begin to develop a relationship with Addie that doesn't require me in the middle.
    Kids will ask me "Doesn't she talk?" I answer "Yep, she certainly does - in a lot of ways. She talks with her hands in sign language, she uses a computer that says what she means, she even understands some Spanish and Mandarin Chinese!" The difference between that answer and "no, she can't talk, she has special needs" in the minds of 6 year olds makes all the difference in the world as to whether they feel further interaction with Addie is possible or not.
    I totally agree with the need to draw distinction at certain times. I just like to point to what really is different between my two girls - not their needs, but how we go about helping them actualize their needs.
    Thanks for your comments and kind words, Elizabeth. Cate blows me away sometimes. This was one such time.

  3. Always well said Terri. My students are deep into a chapter book about Helen Keller and we have many conversations about how much we are a like even though the way we attend to our needs and wants may be different. Can you and Addie and Cate be our guest speakers again this year?

  4. The "needs are so complicated that we won't even try" seems to be all too common. I have been amazed over the last 6 months or so as I have reached out to other families whose children need creative teaching, for example, how little school staff will even try. I think of myself as a relative newcomer on the scene of creative teaching, but even the simple tools that I've learned about, like social stories, are not even attempted. One family I've been working with has a 15 year old son who has been under-served in this way for a dozen years or more. I attended their IEP and my suggestions were treated as if they were truly novel ideas rather than standard practice. Another friend is struggling to help her 5 year old learn to use the toilet. Again no one (until I learned of her predicament) even suggested a social story or picture schedule. In the space of two days we've worked together to write him a little story. This is not rocket science...just taking the time to find out what the issues are and working on it.

  5. I actually think special needs is quite an appropriate term. For example, while both my son and daughter need food to survive, I don't have to tell my son when he should be hungry and then tube feed Jim when he refuses to eat or drink on his own...but this is a daily NEED for my daughter and it is a special need as far as I am concerned. It doesn't lessen who she is in anyway to say it (among
    other things) is a special need.

  6. PS: My phone autocorrected to say "Jim", I meant to say him! LOL.

  7. Kyla, I think you illustrate my daughter's perspective further. The need to eat is the same for your son and for your daughter - it is a finite thing - they must have full bellies. But the way in which that need is satisfied is drastically different, as you mention. When my daughter first witnessed a tube feeding, she was concerned and shied away assuming a complex medical procedure was occurring and that the only thing to do was to pretend it was not happening. When the parent noticed this and quickly explained that her son was having lunch and invited my daughter to have a closer understanding, it became just that - lunch, with a little new-to-her science mixed in. That understanding of a common need morphed into a conversation between the child with differences and my daughter. That conversation would not have happened without the understanding of common need.
    My younger daughter's needs are not special and are not different. Her approach to actualizing them is what is different.