Why my daughter may never be a cover girl for disabilities

12 Jun

I ran across this article, about a Canadian parenting magazine that chose this precious little girl to be on their cover.  It is a fabulous story about making disabilities more mainstream in the media.  It’s a good thing.  Sometimes it seems our society is still hiding our disabled or trying to make them blend in, which is kind of funny considering how these days, we’re supposed to be shining a spotlight on our uniqueness and being accepting of everyone everywhere.  Yeah, we’re still catching up with that with disabilities.

But – and this is just an honest, personal, mommy type of moment – when I read that article, the little bitter voice in my head went “Well Maura will never be a model for disabilities.”

She could be.  She’s gorgeous, loves getting her photo taken, loves clothes, has an amazing smile and is easy going.  She could be.

The problem is, she doesn’t look disabled.  You can’t really “celebrate differences” on a magazine cover if you can’t photograph them.

Once upon a time, when Maura was little, she wore ankle foot orthotics and glasses, and there was a little part of me that was glad, because they helped highlight the fact that she was different.  You see a kid laying on the floor tantruming and think “brat”.  You see a kid laying on the floor, wearing glasses and ankle braces, tantruming, and you think “Hmm, maybe they’re a little different.”  Those things gave visual clues to the bystanders, and brought on a sense of understanding.

Now, we no longer need the braces, and it’s not unusual to see a girl her age in glasses.  The only physical clue to her disabilities is, as a friend put it so correctly, a certain softness to her face.  But even then, that’s not a big red flag in the face of society to warn them that she’s different.

It’s the curse of the invisible disability – it’s invisible in plain sight.  For Maura, her disabilities appear during interactions with others.  A stranger will ask her a question and she’ll not respond, or respond in a garbled way.  The stranger will get this look on their face of “wait…what?”, and I tend to jump in and say something like “Oh, she has special needs…”, and we get the “OH!” reaction.

With us, you have to see the disability in action, hence the lack of magazine covers for us. My daughter just doesn’t look the part of the child with disabilities.

Do not get me wrong – I think such things as that magazine cover story are awesome, and bring such great awareness to the world of disabilities.  The more we get out there and are seen, the less people will have weird reactions when coming across anyone with a disability.  Because at the end of the day, you may be a person with a disability, but first and foremost, you are a person. And we need to let everyone see the person.

But the proud mother in me wishes Maura could be that cover girl.  She would so rock a photo shoot!

 

IMG_1990

my sweet girl

 

 

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18 Responses to “Why my daughter may never be a cover girl for disabilities”

  1. tracie guresh June 12, 2014 at 12:36 pm #

    She sure is a beauty, like my girl who, fwiw,
    would never be a ‘covergirl’ either 😀

  2. maple fan June 12, 2014 at 12:45 pm #

    I know what you mean but think people need to understand a difference or disability does NOT have to be photographical. I teach students with emotional disabilities, which often looks like they are just immature, or attention seeking, or super angry. But their disabilities interfere with their academics, their social life, and their health. They completely fit in with the entire student body, until they don’t. Thanks for bringing up this topic. I enjoy your blog and Twitter feed a great deal.

  3. steevbeed June 12, 2014 at 12:46 pm #

    My son won’t be a cover boy, but he is still one of the most beautiful people in the world to me. Maybe we should design our own covers to celebrate.

    • phoebz4 June 12, 2014 at 12:47 pm #

      I’m thinking big splashy music video, to really show off personalities 😉

      • steevbeed June 12, 2014 at 12:48 pm #

        I’m thinking something loud, with water, and spongebob!

      • phoebz4 June 12, 2014 at 1:15 pm #

        Beach shoot, definitely. Sand, sun, music, lounge chairs for mamas…

  4. Cate Pane: The Clear Parent June 12, 2014 at 1:34 pm #

    “It’s the curse of the invisible disability – it’s invisible in plain sight.” I have always said this! Very well-stated!

  5. Christine Stimson June 12, 2014 at 2:09 pm #

    Maura would make a great covergirl, period – not just for disabilities. Parents Magazine did have a series of articles recently, something like “inside a special needs world” with a mix of children who had visually noticeable disabilities and children with disabilities who look typical. I found it nicely refreshing.

  6. franhunne4u June 12, 2014 at 2:30 pm #

    I think Maura would make run her very own cover story – and with photos which could even be less “uncommon” – which is still distressing for most people – so she would be more “marketable” (covers are all about marketing, or why do they even photoshop super models?) than a child where the un-comfortable topic disabilities is coming with a visual “warning”. People would read her story less biased, and may rethink their attitude – just saying.

    • franhunne4u June 12, 2014 at 2:31 pm #

      just delete MAKE in the first part of the first sentence.

  7. nanis June 12, 2014 at 6:35 pm #

    Maura is a cover girl – on your blog! I’d recognize her anywhere!

  8. Daffodil June 13, 2014 at 10:45 am #

    My beautiful daughter will also never be a poster child, but I wouldn’t want that for her anyway. I’m lucky that she isn’t prone to public tantrums, but when she is fearful of a situation, it’s hard to talk her down. Once on a public bus, the driver started driving while I was still paying the fare. She has balance problems and kind of fell/grab onto the nearest person. The woman was incredibly rude about it, even after I explained my daughter has special needs. Some people just suck.

  9. hilemanmelinda June 13, 2014 at 11:14 am #

    Where do you live? I’m a photographer and I’d LOVE to do a series of people with invisible disabilities, including your little one!!

    • phoebz4 June 13, 2014 at 11:57 am #

      We’re in the PNW…because we love rain 😉

      • Melinda Weir June 14, 2014 at 5:57 pm #

        I’m in Minnesota. If anyone is near Minneapolis, let me know, and I’ll do a shoot! If I end up traveling, I could stop by and meet someone! I know I’m going to Chicago in August!

  10. Renee Anne June 13, 2014 at 12:20 pm #

    Personally, I think Maura is exactly what mainstream media needs as a poster child for children with disabilities…or anyone with any sort of disability. Just because you can’t see it doesn’t mean it’s not there. I know things like Chronic Fatigue Syndrome and Fibromyalgia aren’t the same or even in the same league as what Maura deals with but those, too, don’t scream, “HI, I HAVE A DISABILITY!” at people.

  11. Charlotte Steggz June 14, 2014 at 12:12 pm #

    Today I was in a changing room when there was a mum and a boy. The boy looked normal – though was being cheeky, trying to get inside the changing room. I think he wanted to see his sister rather than be naughty.
    I didn’t think anything was ‘wrong’ with him until I noticed he was carrying a stuffed toy – he was older than the usual toy-carrier, and also he had fluffy gloves on with the fingers cut off. I’m reading The Reason I Jump right now, written by a boy with autism so I figured right away that he must have something along those lines.
    I really feel for you in posts like this, I love these windows into your life with your gorgeous daughter.

  12. Kristen June 16, 2014 at 12:33 pm #

    I want to say thank you for what you said about braces/glasses and how you appreciated the “visible” signs they provided others. I have an autoimmune issue, and a few months ago tried out using a cane to help in pain relief. Besides the physical benefits, I am happy for the little “flag” it gives others – otherwise I sometimes feel embarrassed seeking to sit when others might not, since I’m in my early 30’s and otherwise appear healthy.

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