See the person, not the disability

People-First-Language-2[1]This week someone introduced me to another woman, mentioning that I had a special needs child.

“No,” I responded, “I don’t have a special needs child.  I have a child with special needs.”

“What’s the difference?” the woman I was being introduced to asked, sincerely puzzled.  (The woman making the intro immediately apologized and said she knew better and was sorry to have used that term.)

Honestly, I’m not a dogmatic person.  I know this seems like a really small thing.  But I simply do not want my child or anyone else’s child labelled in this well-intended but limited way.

So I explained, “My son has Down syndrome – he’s  not a Down syndrome child.  Down syndrome is part of who he is but it doesn’t define him.”

Ds22 told me he thinks it’s too subtle a distinction for people to make, but I don’t agree.   It’s just a matter of nicely sharing a different perspective with people.  No one is purposely trying to be offensive or insensitive by using this term.  I’ve introduced my preferred term with doctors, nurses, therapists (alternative and conventional) and anyone else who has used the special needs version to me and almost everyone I’ve spoken to has understood very quickly what I meant.

Actually, at this point I don’t usually mention when people meet Yirmiyahu that he has Trisomy 21.  There’s really no reason to.  Someone will either notice or not.

Despite not being very verbally expressive yet, Yirmiyahu is bright and communicative.  People realize he has a language delay; it’s obvious.  But it’s interesting how few people realize he has T21.  Even in the hospital, a nurse who had been caring for him asked me if it was true that he had T21 – she said she hadn’t realized until it was mentioned in his medical briefing.

Recently after a friend of dd15’s visited, she told me she didn’t like how people treated him after learning he had T21.  I suggested she consider not mentioning it anymore.  To us, his diagnosis isn’t a big deal and she didn’t think it was significant to mention – to us it’s almost like saying someone has glasses or brown hair except that we’re more proud of him than that!

As soon as her friend heard he had T21, she went from speaking to him in an age appropriate way to commenting to dd15, “Oh, that’s so cute, he pointed at the bird – I think he knows what it is!”  As if he suddenly lost a bunch of brain cells and stopped being the engaging little boy she was enjoying before that.  If Yirmiyahu had overheard her he probably would have been wondering what happened to her brain cells.  Seriously, he’s 3.  He understands everything.

The reality is that Trisomy 21 isn’t the problem.  It has its challenges for sure, but the real challenge, the biggest challenge, is society and the limited expectations and lack of acceptance there is for those with developmental delays or disabilities.

This is all tied up with the terms people use.  When you speak with more awareness of a person having an identity outside of his diagnosis, you’re part of the solution.  And it’s so easy to do – a slight shift in how you describe someone and you’ve made the world a place that’s more respectful of everyone!


13 thoughts on “See the person, not the disability

  1. thanx for writting what we need to hear. werent you maybe going to be doing a ted speech? this would be a great topic to speak on also.

  2. Framing reality is so, so important.
    It’s a great idea to associate w/people who know how to best frame situations because it makes everyone better & this is regarding ANYTHING (including that terrorist victim who discovered he had a life-threatening ILLNESS will being treated for his terror-attack wounds). We have in-laws like that who will not complain about oppressive weather &, yes, I know there’s a gemara about that w/Rebi Ami & Rebi Assi, but it’s still wonderful to see people put it into play. The truth is that WE should be taking the initiative & INTERVENING & REFRAMING reality into a positive thing for people who don’t yet get it. I do that during teaching, but this article has made me want to be more aggressive in this, thx, sh c

  3. Very well presented, Avivah – thank you.

    But this isn’t just the case for T21, or delays, or disabilities. It IS the case even for hair color, eye color, just about anything. I can’t tell you how many people I know speak to ALL children in a very sing-song-y, not-really-relating kind of way – because they’re children, and they don’t really relate to children as full human beings. This isn’t nasty or anything, they just don’t know any better and surrounded by lots of examples of public “child-speak” (the “oh isn’t that so cute!” kind of comment you would never make to an adult without expecting to get punched) and they just adopt it.

    So politely educating people is a service both in what you are imparting and setting an example of how to do it.

    But honestly, I think we all – ALL – me included – could use periodic mini-workshops on how to speak to other real people, how to express sympathy and empathy often without saying a word while still remaining true to who you specifically are, and just practice a bit with one another.

    Because as soon as we feel at a loss or surprised or unfamiliar with someone else’s being – whether they are a person with a different disability, different gender, different religion, different appearance, different language – we all lapse into confusion that so often results in inadvertently disrespectful language. It would be good for us all to practice the respectful kind so that when things happen that put us off balance, we still say the things we’d want to hear ourselves saying.

    1. It’s true – it’s hard (impossible!) to respond appropriately with each situation we find ourselves in. What feels good to one person is absolutely wrong for another. I try to strive for being respectful of the person I see to the best of my ability, but my ability is often very limited. What I hear you saying is it’s important for us to learn to be appropriately in relationship with others, and that’s truly the source of everything.

  4. Yasher koach, Avivah! You always are right on the mark. Language is such an important tool for us all! For describing, for perceiving, for anticipating…. We struggled with this a lot! I always described Liora as a beautiful child with blond hair, blue eyes, what she liked to do, to eat, how she encouraged and affected people, how all of the opportunities that she enjoyed and that we enjoyed with and as a result of her being in our family. At the very end of my explanation I would add that she lost the ability to talk, needed help with all of her ADL skills… The explanation for all of this was that she had Rett syndrome.
    When we first began our journey someone I remember someone’s describing families. We could be a “special needs family” or a family with a member who had special needs. I chose the latter. HOnestly, I feel we all have special needs. Some are more obvious and more critical than others.

    1. Lorre, I am so glad to have someone with your experience and attitude commenting on this! You have modeled to me and many others how to live an integrated and balanced life that is inclusive of your child with a disability.

      And I emphatically agree with you that we all have special needs!

  5. 100% correct! The distintions you suggest are not too subtle to be understod. Individuals need to become aware of a more apprpriate way to express themselves. Especially with adult who have disabillities( many acquiredin adulthood or as a result of a war related incident, an accident or a stroke, etc) that person first of all is a person who have skills, abilities as well as a personality so pople NEED to learn to make those distinctions. For adults with acquired disabilities one must remember they had a life before whatever caused their disability and that person is still there. Good article!

    1. What you’re sharing is so important – to remember to always look at the person and not let the disability obscure our view of who they are.

  6. I agree wholeheartedly and also with the comments. I correct people all the time.
    I just want to add that when I read that you don’t mention that Yirmi has Trisomy 21 when you introduce him to someone, I thought, “oh my gosh, and why in the world should you?!”
    When someone introduces his child to you does he say, “this is my son. He has temper tantrums? ”
    or isn’t good at math. Or whatever.
    Like someone else said, we all have our challenges.
    A little bit of bragging never hurt, though. “This is Yirmi. He’s super bright, social, and an all around great kid.”

    1. YK, you’re right – you wouldn’t introduce a child by telling people about what’s wrong. But in ‘disability world’, there’s always a focus on what the child can’t do rather than what he can. Which is one of many reasons that I choose not to live in disability world mode – because it’s not logical, not compassionate and not fair.

      And I’m totally with you that bragging has an important place!

  7. My father is blind from birth. We were raised to feel his blindness was just another characteristic, certainly not the most important one. As a child I learned from experience that many grownups were stupid. (Now I would say uninformed, but as a young child, I was amazed at how unintelligent these grownups were!) They spoke louder to my father (he’s not deaf, so how does the help?) or assumed I would be the one crossing him across a busy street (even when I was 4!), spoke to the child instead of the more capable “disabled” grownup…

    I also remember quite clearly the condescending tones used towards me by grownups who couldn’t believe that a child was a real person, so I try never to treat children as anything other than smaller people who understand everything going on around them.

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