Advertisements

Disabled, #saytheword, and special needs

18 Feb

A friend sent me a message today – “Have you seen this? What are your thoughts?” with an accompanying link to a blog post entitled “”#saytheword, not “special needs.

As I refer to Maura as having some special needs, my curiosity was peaked.

Please note – the author of the blog post asked me to remove her words, and I’m respecting her request – to summarize, the blog writer talked about how when people say “special needs”, it gives the idea that those with disabilities are asking for more than their share when they ask for accommodations, support, etc, so they can have as equal of an experience or access as a non-disabled person. She also writes how the phrase “special needs” goes against the social model of disability. As in, a deaf person is not disabled because they can’t hear, but because the world was set up for hearing people who have made things inaccessible for non-hearing people.

 

Hmm. Well, I’ll admit, I’ve never looked at it that way. I just found it a really easy way to quickly convey Maura’s differences in a way that the common people could grasp.

Again, original blog post words were removed, and I am summarizing – Apparently, some people find the word “disabled” stigmatizing. Not using the word makes that worse. The word disabled isn’t a dirty slur word, stop treating it as such. 

I have to admit again, I didn’t realize using the word “disabled” was seen as a bad thing. I also refer to Maura as “cognitively disabled” or “cognitively impaired”. It’s really her only real label. It’s on all her special ed paperwork and helped us get her qualified as “disabled” in the eyes of the state (not that we get any benefits, just that recognition, but that’s another blog post for another day.)

So now, there’s a call out to stop using the phrase special needs. We’re to proudly say Disabled.

And maybe I haven’t had enough coffee, or have watched too much “Scooby Doo”…but part of me is a bit…huh?

First, yes, language matters. I will totally go to bat on that one. However, if someone asks me if my child has special needs, I’m not going to lambaste them for improper language. I’ll say “Sure, she has cognitive impairments and low muscle tone and apraxia and how long do you have because I have this great soapbox I can climb up on while boring you with the details of what all makes my daughter different. You’ll love my impassioned speeches on health insurance and special education! Wait! Come back!”

Or, you know, I just say “Yep.” and then move on. Because usually, they don’t want to know everything, and if they do, they will ask more questions, and I will answer more questions. Or we go forth and talk about something else. Because life doesn’t really quite revolve around my daughter’s disabilities. It also revolves around the Xbox and how much food is left in the fridge.

Maybe it’s because I don’t feel shame in the word “disabled”. I feel like I spent years trying to get people to admit that yes, my daughter has legitimate disabilities and because of those, special educational needs. I worked hard to get everyone on the same page. Honestly, looking back, I can’t believe I had to fight for it. If anyone yells at us for using the disabled toilet, I will pronounce that my daughter is, in fact, disabled, and we have legit reasons for using it. That hasn’t happened yet though, because if anyone gives me a look, they get a wicked side eye from me. I only have so much time in my day.

All that said, I still refer to Maura as having “some special needs”.

Why?

Well, I don’t know…I just have. We’ve never had a handy label, and she’s physically able. People are quick to get our situation when I say she has special needs. There’s a lot going on in my life, and I can only explain Maura’s differences so many times before I go the quick and easy route. Otherwise, my coffee would get cold, or I’ll miss dinner.

And because I’m so busy doing other things, and because we’re also in a little bubble of our own in the world of the undiagnosed, I never knew this was a problem. Or the word “disabled” needed to be taken back.

The one thing I do know is, if we get caught up in reclaiming words and using the right wording at all times, we may actually put off those who otherwise are trying to learn and understand. If you show genuine interest in my daughter and her disabilities, and are actively trying to learn more about them – or just decide that she’s awesome and nothing else matters – I’m not going to jump down your throat if you don’t use the right terminology. Hell, people have flat out asked me “So what IS wrong with her?”, people who became great friends, and who always included Maura in things.

See, we all say really dumb things sometimes. No one says the right thing always. You can be the most PC person and still be a jerk towards my kid. Or, you can be a good person who doesn’t know that there’s a war over words going on, you just want to know more because you’re a decent person.

So yeah, that’s my non-answer to this newest thing to cross my path. Will I change? Probably not. Is that awful of me? I’m sure I’ll be judged by some for it. Do I have time for that? No. I’m too busy with other things in my life, like finding ways to meet my daughter’s exceptional, unusual, singular, uncommon, unique, special needs. And buying more food for the house full of ravenous, famished, carnivorous teens. And meeting my own, mundane, run of the mill, ordinary needs.

 

 

Advertisements

16 Responses to “Disabled, #saytheword, and special needs”

  1. figspowart February 18, 2016 at 6:43 pm #

    Well said! While I think it’s important that disabled people are in charge of the discourse, I too teeter between appreciating people shouldn’t be defined in negative terms and just wanting to bloody well say something without tying myself in knots!
    We’ve also had the “What’s wrong with him?” questions, and when I’m feeling subversive I retort, “Nothing! What wrong with you?”
    Or the classic “What’s he got?”
    “Well, right now he has an orange teddy bear, but if you wait a few minutes he’ll probably have a power drill or a toilet brush.”

    • phoebz4 February 18, 2016 at 6:45 pm #

      Yeah, if anyone asks Maura what she has, she’s going to describe her unicorn, or new shoes, which are way more interesting than anything else going on.

  2. saracvt February 18, 2016 at 7:24 pm #

    Well, I don’t know about this. I looked up the definition of “special” in the Merriam-Webster & got “different from what is usual”. Synonyms are things like “unique”, “unusual” or “specific to a particular situation”. Hmmm. I don’t know about you, but my girls DEFINITELY have needs that are “unique” & “different than the usual”. I just today got a value-pack of Depends because my 13-year-old daughter is not reliably toilet-trained & I can’t afford to keep buying new panties. It is decidedly unusual that she’s menstruating but not toilet-trained yet.

    I think some people find things to be upset about so they can have a great crusade & feel like they’re making a difference! Me, I’m upset enough regularly, so I’ll just keep saying “special needs”.

    • franhunne4u February 19, 2016 at 12:49 am #

      And no language warrior should take this right away from you. After all – it is your life and that of your daughter that is concerned here. You should be able to talk the way you think it right.

  3. Holly February 18, 2016 at 8:28 pm #

    I’m sorry if I’m out in left field, but ain’t nobody got time for this. Maybe the person who wrote the original oped isn’t soooo disabled that they need or want the label, but, as you said, it’s a quick explanation for an otherwise very complicated series of genetic disorders and other sub-diagnosis’ that could take hours to unravel. Ugh.

    • phoebz4 February 18, 2016 at 10:03 pm #

      so not out of left field, I may or may not have had the same thought. As I diagnosed tablet issues while trying to track down teens while editing a doc as the eldest told me the sink was clogged…

    • theeisforerin February 19, 2016 at 1:25 am #

      I think you misunderstood my post as it was excerpted here. I am very much in favor of the word disabled.

      I approved this pingback but it would be appreciated if Phoebe would please delineate which parts are MY words in some way, eg italics, bold, quotation marks, etc.

      • phoebz4 February 19, 2016 at 12:40 pm #

        First, I did quote your words in italics…but I will clarify them even more, as in checking on the mobile view, no, neither of those things showed up.

        Second, I do get that you approve of the word disabled. I do to. I never saw any shame of it. However, the disapproval of the phrase “special needs” is what I was trying to focus on. My daughter has some special needs, which is just easier to say than “some cognitive disabilities” (which, actually, could be my own issue as I had a tremendous speech problem as a child and while I overcame it, I still stumble over certain letter pairings.)

      • saracvt February 19, 2016 at 5:35 pm #

        Ummm…she DID put your words in Italics. I don’t think anybody was confused whose words were whose.

        And the post was about not using the term “special needs”, not “disabled”. That’s what most objected to. So we DIDN’T misunderstand your post, we just disagreed with it.

      • theeisforerin February 19, 2016 at 5:42 pm #

        What did you mean then when you said I must not be “sooooo disabled?”

      • saracvt February 19, 2016 at 6:11 pm #

        Ummm…I didn’t say that. You would be better off addressing this question to the person who actually did comment it.

        Are you sure you read Phoebe’s post all the way through?–you seem very confused.

      • theeisforerin February 19, 2016 at 6:14 pm #

        It’s hard to follow on a mobile device. Thanks for being condescending though.

  4. theeisforerin February 19, 2016 at 6:17 pm #

    Phoebe, I would like to politely ask you to please remove my words and link to my blog from your post. Your readers are treating me poorly and I just feel like I’m being set up as a punching bag. Obviously you can do what you like since my blog is public, but I am just asking as a fellow human being that you have a little compassion. My post is meant to promote respect for disabled people, not derision and putdowns. It’s hard to be vulnerable about disability and be publicly treated like a “very confused” person. It hurts. Thanks for understanding (I hope).

    • phoebz4 February 19, 2016 at 6:51 pm #

      I have edited the blog post, removing the link to your blog and your words, with the exception of the blog title post. I did summarize your words in order for my blog post to make sense.

      As for feeling that you were treated poorly, I am sorry you felt that way. I tend to let most comments come through, even the ones that bash me (nothing like finding a pingback to a thread where you find out you’re considered the worst mother ever!)

      The disability community is a large, very diverse one. Sometimes, we step on each others toes. Hopefully we can learn from each other more than step on toes.

      • theeisforerin February 19, 2016 at 7:01 pm #

        Thank you, I appreciate it.

    • saracvt February 19, 2016 at 6:57 pm #

      I apologize for the words “very confused”. But, in fairness, you had gotten two clear things wrong. I would ask that of anyone, not just disabled people. I’m sorry that it hurt you, though. That is never my intent.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: