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The terms we use

13 Nov

I read a post by a disability blogger I follow, about the use of infantilizing words and phrases we use in lieu of “disabled” – like “Differently Abled” and it’s shorter term “Diffabled”.

I’ve always hated differently abled. Diffabled just is ridiculous.

I got what this blogger was saying, because I’ve seen grown adults do gymnastics to avoid the word “disabled”. Like the one I heard, where the person used the term “special abilities” – I interrupted slightly and pointed out that the phrase they used made them sound more like Superman. My daughter isn’t a member of the X-Men, she is disabled.

The part of the post written by the disability advocate that made me pause was that they considered “special needs” basically as bad as “differently abled”.

There is a part of me that gets it. It is a bit cotton candy of a descriptor, and it’s something that people usurp unnecessarily. “We ALL have Special Needs.” they’ll quip in a show of false solidarity. No Gladys, your preference to mayo over mustard on your sandwich is not the same as my daughter’s apraxia. Thanks for playing.

But there’s a part of me who has had the experience where we’ve had to use it to describe our daughter, and would still use it even though I kind of knew better. 

Why?

Well, part of it is because of society. When you think of the word “disabled” or conjure up a picture of a disabled person, what picture pops up in your mind’s eye? I bet there’s a wheelchair involved, or a person with Down’s Syndrome. Those are the disabilities we’ve come to know as society.

If I walked out of the disabled toilet with my disabled daughter in tow, we will sometimes get a stink eye from those waiting. Because my daughter doesn’t look disabled, therefore, we have no right to use it. Even though she IS disabled.

Society reminds me that my daughter doesn’t fit the visual of “disabled”. 

Add to that, the fact that my daughter doesn’t have a diagnosis. We can’t say “She has autism.” or “She has Fragile X Syndrome.” So we have no label that society can embrace warmly and say “Oh, I’ve heard of that because some celebrity’s kid has that.”

Frankly, we weren’t even allowed to use “disabled” with her for the longest time, partially because we didn’t have that qualifying diagnosis that made her legitimately disabled in society’s eyes. Oh sure, the girl wore ankle braces and was in OT/PT/ST and had a laundry list of issues – but the school kept checking off the box of “developmentally delayed” until it was ridiculous. As the special education director didn’t like spending SpEd money on SpEd students, I’m pretty sure ticking off the “delayed” box meant that they could spend less on her.

But even before that, I had people tell me that I was overblowing Maura’s issues. That she’d be fine. That it wasn’t like she had a real disability like other kids they knew. Doctors at first said she’d probably outgrow her delays. They were, after all, just delays. They weren’t real disabilities. If they were, surely she would be worse off, have a label, have a diagnosis.

You can see how we hesitated to use the term “disabled” with our daughter. Not because we saw it as a dirty word – but because in many ways, we weren’t allowed to use it. 

It wasn’t until we moved to Ireland that we started feeling like it was okay to use the phrase “disabled” with Maura. Mainly because in Ireland, they looked at her and said “Yep, she’s disabled, here’s a school for disabled kids, here’s some disability benefits, what do you mean people in the States didn’t think she was disabled? And what’s wrong with being disabled anyway? Nothing. Nothing’s wrong with that.”

Just like that, we were legit – though I still got a bit of a stink eye coming out of the disabled toilet with her at the shopping centre at Christmastime with the long lines. I swear, we weren’t cheating! She is disabled!

Because at the end of the day, Maura still doesn’t look disabled. We still don’t have a diagnosis. All we have is “intellectual disability”, which is a mouthful and honestly, I don’t think really describes her well. It’s too generic, and doesn’t take into account her savvy ways and cleverness.

Just today though, I came across a blog written by a mom of a child with physical disabilities. And the tag line for it stated how she was writing for disability and special needs awareness. I wondered – if they’re both supposed to be the same, why the “and”? They aren’t two different things.

And just like that, I understood better the disability advocate’s point of view. That by using “special needs”, we’re downplaying actual disabilities. 

Something I should know already because it happened to us.

Or maybe, because it happened to us, I was too close to things, and needed that fresh perspective.

I’ve been working to phase out my use of “special needs” – but I need society to catch up with me, to follow my lead.

So please – I’m asking you – call my daughter disabled. Consider her disabled. Her disabilities are legitimate. Her disability is real even if it doesn’t have a name, or if we don’t know the cause of it. In a way, we’ve worked really hard to earn that label of disabled. It isn’t an insult…unless you think being disabled is a sad burden of a life. Then you need to rethink a lot of things, because my daughter’s life is a fabulous one.

IMG_3039

Maura – 2011 – Killiney Beach, Ireland [image description: little brown haired girl in a light pink top and darker pink skirt, wading slightly into the Irish Sea, hands up in surprise as a wave hits her ankles]

 

 

 

 

 

 

 

 

 

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8 Responses to “The terms we use”

  1. Denise A. Chavez November 13, 2017 at 4:45 pm #

    My daughter doesn’t look it, but she is cognitively impaired/intellectually disabled/MR…who knows which label to use anymore. She is on the Autism spectrum, she’s legally blind, and the list goes on. I’m not a golfer but I was told that golfers use handicaps so they can compete equally even at different skill levels. I think “handicapped” is still the best phrase. Like you said about Maura’s abilities not being accounted for by an ill-fitting label. Most of our kids have those abilities that society doesn’t give credit for. So I think handicap is more encompassing- Christa can’t compete equally in life so she “needs” that help her get closer.

    Like you said, we all have special needs, and we are all differently abled (I’m a horrible cook who needs lots of extra help) so what’s wrong with my saying my daughter is handicapped. We can go too far trying to be PC. If disability wasn’t natural I bet there’d be far fewer people applying for SSI and disability benefits.

    • Phoebe November 13, 2017 at 7:18 pm #

      actually, what I was saying was that we don’t all have “special needs” – not in the definition of having a disability, and that terms like “differently abled” are a bit childish.

      FYI – using the term “handicapped” in Ireland is quite the no-no. Learned that one when talking about something – thankfully, the people correcting me were kind about it, and were surprised we still use the term in the US.

      • Michaela November 14, 2017 at 9:15 am #

        Handicap refers to a situation or structure. Not having a curb cut for people who uses a wheel chair is a handicap, people aren’t handicapped, I’ve always been taught that we put people first: He or she is a person with a disability. But I still believe that what ever a person prefers is what I’ll use (as long as you don’t get mad at me if I mislabel someone before I learn what they prefer). I hate using labels for that very reason – everyone has their own preferences and perspectives.

  2. Susan Maclean November 13, 2017 at 7:38 pm #

    My daughter has a disability. She too had many diagnoses over the years and basically determined for herself that “autism” was the best fit. I have worked for over 30 years in the disability field. With that said, I use no labels to describe my daughter. Instead I say my daughter has autism. That leaves lots of room to add and she is musical, loves to read and is currently doing fairly well. Autism is only a part of who she is and that’s what I want people to know.

  3. Widdershins November 13, 2017 at 8:21 pm #

    Know that ‘stink-eye’ well.

  4. Saracvt November 14, 2017 at 4:17 am #

    The reason I use “special needs” rather than “disabled” for my daughters—like Maura, they are able-bodied, taller than me, and don’t fit society’s concept of “disabled”—is not for other people so much as it is for THEM. They’re generally in hearing range, and what you hear your parents say about you, particularly repetitively, shapes how you think of yourself. I go out of my way to never use the term “normal”, as something they are not. When Youngest transitioned from her behavioral school to the school just down the road, it was to a “traditional” middle school, not a “normal” one. Yes, I get that it’s contorting the language a bit, and semantics, but if you ask me which is more important, society’s feelings or my daughters’ self-confidence, I hope you know what I’ll answer.

  5. Charlene Bullard - FaithtoRaiseNate.com November 14, 2017 at 7:33 pm #

    I️ Wrote a post similar to this About People not wanting to be called Special Needs. I️ really just want to respect others views and I️ want to people to respect mine decision to use special needs or disabled to describe my son.

  6. hjsburnett November 17, 2017 at 8:42 pm #

    YOU.ARE.SO.RIGHT.
    That is what most people conjure up in their heads when they hear “disabled” The ramps. The severe.I feel like it’s because of lack of awareness. Lack of knowledge. Lack of education. That’s why blogs like your’s are important, Phoebe. Even though it’s hard to share your personal story and fight the haters who, as we know, are simply trolls, you are playing an important role in educating people and empowering mothers-even though you don’t know it.
    We All Have Special Needs…my aching a@@…my lack of skill when it comes to setting the perfect table scape and hosting an AH-MAH-ZING dinner party for 12 is laughable compared to my son’s autism meltdowns and lack of speech. I mean, c’mon. Give me a break. But see, I think the Special Snowflakes thing has just been taken too far at the cost of our kids. I want to take it back for them. Like you said, y’all fought for it.

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