So…

22 Nov

Yesterday…did something happen here?

Oh yeah, I got a surge of traffic, with nice people pointing out things, some who agreed, some who disagreed, then I got called out over using religious phraseology incorrectly, and informed that I needed to use “People First Language”.

I was telling this all to my friend last night, who went “Wait, what is this People First Language you speak of?”

I tried explaining, giving them example of how one commenter pointed out that I referred to people in our situation as “special needs families” and how this was offensive, that the proper way is “a family with a child with special needs”.

My friend said (and I’m not directly quoting, forgive me) –  “But that doesn’t sound right, it’s like the child isn’t really part of the family, that that child is over here (gestures with hands to one side of the table) , and the rest of the family is over here (gestures with hands to other side of the table).”

She pointed out something that I realized was part of why I find People First Language a bit awkward.  To me, instead of highlighting the person first, it seems to highlight the difference more.  I also find it a bit cumbersome and not always sounding grammatically correct when writing.  It also just isn’t the right descriptor.  I can’t describe my family as “A family with a child who happens to have special needs” – Maura is not a separate entity attached to the side of the family.  She is dead-center, screaming for attention, she is the Sun and we all revolve around her (or at least, she’d like us to.)  She is our epicenter – while we work hard to not let her issues affect too many areas of our lives, the fact is, her issues DO affect our lives.  Every single one of us – parents, brothers, sister, grandparents – even the dogs!  Special needs is a huge part of our family. We are not a typical family.  We are a special needs family. There’s no shame in that.

What’s a bit funny about all of this is that just a few days ago, another fellow blogger posted about why she doesn’t do People First Language, and I commented how I thought it was a bit awful that anyone would chastise the mother of a special needs child – the mother who’s in the trenches, at the doctors/therapists/schools, the mother up at 3 am for the third night in a row, sleeping in a hospital chair, fighting for her child’s right to be part of the human race, being the best advocate she can – she’s the one getting chastised for not using People First Language?

And now it’s my turn.  Well, good thing I’ve been thinking about it this week!

Here’s the deal – most of the time, I will actually try to use People First Language when being more specific or speaking of an individual.  I will say “The child with Down’s Syndrome” or “My friend’s child, who has autism.”.  But when I start getting more general, I use phrases like “special needs children” and “special needs families” – I’m trying to make a point, be more succinct. or just typing fast enough to keep up with my brain.  If you met us for the first time, I’d introduce Maura, and say “She has special needs” or even “She’s special.” (which is always given with a wink and a smile.)  To me, it’s more about what fits the situation, what’s the easiest way to get my point across, and most of all, what the intention is.  Why is it offensive for a mother to describe her family as a “special needs family”?  Especially when she is trying to advocate for them?  What if a person who happens to have autism wrote how “as an autistic..”?  Would you correct him?  State that calling himself “an autistic” is offensive to all those with autism?

I’ll be honest – I’m not that PC.  I mean, I am, obviously, but I also spend so much time dislodging my foot from my mouth, it’s a wonder I buy shoes at all.  And while we can all (mostly) agree that certain words used certain ways is extremely offensive, there are other more grey areas in the realm of disability that we all may have to agree to disagree on the importance.  We’re all fighting for acceptance, whether it’s for a loved one or ourselves.  I accept the special needs that accompany my daughter in every area of our life.  Those special needs are part of who she is. They have shaped the person she has become, and the mother I have evolved into.

At the end of the day, I am aware of the laws of People First Language, but I do not always follow them.  Does that make me a bad special needs parent  parent of a child who just happens to have special needs?

 

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22 Responses to “So…”

  1. thewaggonerfamily November 22, 2013 at 12:47 pm #

    I think sometimes people just get twisty panties to have something to rant about. It is particularly obnoxious when the twisty panty and bunchy boxers folks aren’t the one whose feelings could be hurt. That said, I do always try to use the most accepted wordage in use, but when it gets awkward, I do switch to less accepted words. For example, I usually use “African American”, but there are some circumstances that “black” or “people of color” works better in context. Same things with “special needs” or a “child with “. All of that said, I think the most important thing is for people to self define. So if special needs family works for you, than that is what you are. For others to impose their descriptors upon you, when you have already decided how you prefer to describe yourself and your family seems ludicrous and obnoxious. When I talk about your family, I usually say “the family”.

    • thewaggonerfamily November 22, 2013 at 12:48 pm #

      That was supposed to say at the end “the *insert last name* family”

      • phoebz4 November 22, 2013 at 12:49 pm #

        😀

  2. Joy M. Newcom November 22, 2013 at 1:06 pm #

    Well … Here’s another take. My mom (grandmother to my son who has special needs) once reserved seats for us in the front row of a crowded community event with this sign: “Reserved for a Handicapped Family.” Hmmmmm …

    • phoebz4 November 22, 2013 at 1:13 pm #

      They couldn’t just put “Reserved for the Smith family”? Yipes.

      And FYI – the term “handicapped” is a big no-no in Ireland. So don’t ask for a handicapped parking spot there, they will politely correct you that they use the term “disabled”.

      • Joy M Newcom November 22, 2013 at 1:18 pm #

        Be assured I had a discussion with my mother (a career high school educator) about this after … AND I saved the sign. Still have it more than a decade later. I love its inherent metaphorical properties. 😉

        As a part-time grammarian, I am also amused by the placement of chosen words. For instance: an “accessible bus” is quite functional, far more so than a “handicapped bus.” The word “handicapped” is simply not very functional in these instances. 😉

      • phoebz4 November 22, 2013 at 1:20 pm #

        LOL! Very true!

        We helped with fundraising for a new bus for Maura’s school in Ireland – it was for a “wheelchair accessible bus” – but that’s how we learned you couldn’t write “handicapped”.

  3. saracvt November 22, 2013 at 1:43 pm #

    Oh, good GRIEF!

    I got scolded online for describing myself as “an epileptic” rather than “a person with epilepsy”. I understand it’s the fashion now to emphasize the person rather than the disability, and I concede the point, but my view is that *I’m* the one having the ever-loving seizures, not you, so I’ll yabhati describe myself any way I like.

    And if I’m of reasonable intelligence and informed of my disability, please have the grace not to be offended for me. It offends ME.

    • phoebz4 November 22, 2013 at 2:01 pm #

      Seriously? Wow, people are…interesting.

    • Joy M Newcom November 22, 2013 at 2:25 pm #

      Self-imposed labels are FAR different than imposed labels. Language matters.

      I think it’s a bit like the n-word. Someone who is black can choose to use it, I should not. And while someone with a physical disability may choose to call themselves “a cripple” or “crip.” I should not. (Nor would I.)

      • saracvt November 22, 2013 at 3:04 pm #

        Thank you. Exactly my point. But she wouldn’t have it. She claimed that I couldn’t speak for “all people with epilepsy.” I replied that I wasn’t trying to; just me. Maybe the idea that we should just speak to people as *individuals* could work…hmmm.

      • phoebz4 November 22, 2013 at 3:41 pm #

        well now that’s just crazy talk!

  4. Susan Holmes November 22, 2013 at 1:55 pm #

    I actually think “special needs family” is a correct term. Your entire family deals with Maura’s special needs. Maura has the special needs, but the entire family has to adjust to those needs. The adjustment is done with great love, but it is an adjustment nevertheless. You cannot have a special needs child live in a family and not have the entire family affected in some way.
    Your kids do a fantastic job of truly loving Maura. However, they put up with their rooms getting messed up by her, with having to look after her, pick up after her and so on. They make adjustments. They put up with the looks that her occasional shrieks in a store occasion. They slow down to adjust to her walking ability when going places.
    You and Josh have made the adjustment to knowing you will have to take care of her for the long term and not until “she grows up.” You plan your vacations differently. You are careful about when you get away from the house without children. You live differently than you would if Maura were “normal.” You do it with great love.
    However, it is being oblivious to not recognize that the entire family is affected by special needs, not just the child. You are a “special needs family.”
    The quibbling over words used by a family in the trenches seems unnecessary.

  5. Jessica November 22, 2013 at 2:05 pm #

    I used to work with providing parents who has children with severe illness or disabilities financial aid.
    The general vocabulary surrounding these issues is a virtual minefield and then some. Once, a parent became furious at a phrase I used, not deragatory, and told me that the siblings of the child was “typically developing”, I think I used some variety of “normal”.

    Siblings are also affecting by whatever happens and affects the family. It would be naive to claim anything else.

  6. Jennifer Jo November 22, 2013 at 5:47 pm #

    Holy heck! I’m all for sensitivity, tact, and kindness, but arguing over labels and the language used by those if us who the vocabulary was invented for is such a drain of our already depleted energy. We all need to remember there are moments we are happy to complete a full meaningful sentence and give each other the benefit of the doubt. It takes time to type out a blog, and sometimes the most PC way that couldn’t possibly offend anyone is wordy, cumbersome, and we are too tired. – from a mom of two girls with chronic medical conditions;)

  7. Cerridwynn November 22, 2013 at 9:32 pm #

    I will use whatever language seems appropriate when it comes to talking about My special needs child, or our special needs family. I am not offended by my daughter’s Autism, and neither is she. If other people find my phraseology offensive, it’s because they choose to. And frankly I have bigger things to worry about than a perfect strangers hurt PC feelings… You know like taking care of my Autistic child.

    • saracvt November 29, 2013 at 12:17 pm #

      Thank you! Exactly! Couldn’t have said it better myself!–mother of an autistic child AND a bipolar child (different kids) who doesn’t really have time for you

      • Cerridwynn November 29, 2013 at 10:47 pm #

        Boy you have your hands full! I guess I’m just a bit more practical in my thinking. My daughter has issues with pragmatic language, let alone having to worry about offending someone with the way she chooses to talk about her diagnosis. Where I agree the first label that should ever be applied to any person is person or human, I’m not going to waste time trying to satisfy the masses on what they feel is acceptable language for a diagnosis she and the rest of her family live with every day. It reminds me a bit of the attempts of characters in comedy movies not to end a sentence with a prepositional phrase.

  8. Kris November 23, 2013 at 11:02 am #

    I had to go back and read the other post again, as I was utterly confused on how there could have been any offense taken. It sickens me that people quibbled over wording that was essentially the same, simply rearranged, when you were profiling the gross negligence of a language resource in not identifying words used as slurs in a proper negative context. As if we needed any more proof that some PC obsessors are more concerned with semantics than the actual people behind the issues. *harrumph* The sad thing is, that people like that make our job advocating against genuinely offensive word use and behaviour a harder battle to fight.

  9. Christian Laurin (@slashinvestor) November 24, 2013 at 6:37 pm #

    If you will indulge me for a moment.

    One evening I was sitting in a bar with a Scot/German, Englishman, and Welshman. We were talking about how Americans were changing the language and correcting it. In specific we were talking about politically correct sentences.

    My favourite is Plain Jane and how it should be Plain Vanilla. The Brits were of the opinion that such phrase changes are lunacy. While we might not be insulting all of the Janes of the world we are insulting Vanilla pudding. Now before you start cracking up and thinking “who cares about insulting vanilla pudding as it is non human.” No the point was that anybody who happens to like vanilla as a taste by association is well, simple. However as we cooks all know vanilla is anything but simple.

    We concluded that the real issue is not the words itself, but how to express ourselves. Instead of coping out using metaphors we should learn the language and use the proper words, instead of rewriting the language to fulfil some need. Who knows we might even expand our vocabulary. 😉 😉

    So instead of saying plain Jane, or plain vanilla say, “that paper was basic without any outstanding arguments.” 😉

    • saracvt November 30, 2013 at 2:45 am #

      My husband would agree with you. His favorite flavor, bar none, is vanilla, often unadulterated. When I recently went to a Bath & Body Works store, the scent they had the most of, and yet kept selling out of, was vanilla, and variants of it, such as “Vanilla Snowflake”, which seduced my daughter and actually just smells like vanilla buttercream frosting, and “Brown Sugar Vanilla”. So how is it possible that something so popular and so beloved is linguistically so bullied?

  10. Joan T Warren November 29, 2013 at 10:32 am #

    Sigh. I remember writing during a discussion group in an online course for a Master’s in OT and a peer called me out on a People First error. I’m one of the “professionals” who ought to know better! Like you, though, sometimes it is just so wordy to spell it all out properly! I wrote my master’s project on Resources for Families Who Have Children With Special Health Care Needs. Try typing that 7,000 times! Fortunately I am permitted, once defined, to use FCSHCN! A life saver, but still awkward because who wants to READ an acronym 7,000 times???

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