“She’s such an inspiration!” (sigh)

Posted by Karen - December 1st, 2013

Posted by Karen

Several years ago, shortly after Miranda was diagnosed with Fibrodysplasia Ossificans Progressiva, a well-meaning acquaintance of mine gave me her opinion that Miranda would always be teaching others about the beauty and value of life.  In other words, she would be inspiring.  This kind of unsettled me, which of course was absolutely not the intent of this comment.  This comment was just one of the first of many times over the years that I’ve heard remarks like this, and it’s got me thinking…  For a long time now, I’ve been musing off and on about his habit some people have of seeing someone with a disability and stating that the person is “an inspiration”.

I do of course recognize that when people call my girl an inspiration, this is meant to be a positive, supportive comment.  As such I appreciate the good intention behind it.  I just… struggle with it a bit.  See, from my point of view, I’ve got this daughter who wants nothing more than to have fun, laugh with friends and drink up life, and not to always be reminded that she is different.  Because, of course, someone who is an inspiration sounds like a person working hard to do something truly noteworthy and astounding.  If Miranda does something very impressive, something made doubly-difficult because of her progressive disability, then sure, by all means call her an inspiration.  Hell yeah, she’ll be an inspiration if she earns a Phd, or travels the world as a news correspondent!   But, is she an inspiration just for existing?  For doing things people do every day?

I recently read a blog by a young woman who was a wheelchair user because a spinal cord injury had left her paraplegic, and this gal hit the nail on the head about this issue.  In the interest of giving credit where credit is due, here’s the link to the blog: http://www.huffingtonpost.com/rachelle-friedman/10-things-you-shouldnt-say_b_4334039.html.  Check out her point number 3, “You’re an inspiration”.  I think Rachelle Friedman is spot on here – she is not an inspiration just for getting dressed up and going out for drinks with her friends!  Equally so, Miranda is not an inspiration just because she goes to school, attends Girl Guide meetings or, you know, walks down the street.

Maybe someday Miranda will be an inspiration, but I honestly don’t believe she is right now.  Right now, she’s a kid who reminds me a dozen times a day what things she wants for Christmas.  She’s a kid who totally enjoyed the Disney movie “Frozen”, and is now all into the little snowman guy from the film – for her, he vies with the Dispicable Me minions for favourite movie characters (LOL).

Couldn't pass up an opportunity for a photo with Olaf the Snowman!

Couldn’t pass up an opportunity for a photo with Olaf the Snowman!

She’s a kid who gripes about having to do piano practice, and instead would like to head over to the mall.  Miranda has made it to age 8 having been in more or less her current physical condition since age 3, and for her, the joint limitations she has are just facts of life as she plays with friends, debates the relative merits of Taylor Swift vs. Katy Perry and tries to scam Christmas cookies.  In short, she’s a typical kid who happens to have some physical differences, differences which she’d mostly like to just forget about.

Miranda with her new "minion" winter hat, with which she is THRILLED.

Miranda with her new “minion” winter hat, with which she is THRILLED.



4 Responses to ““She’s such an inspiration!” (sigh)”

  1. I agree with you to a point. However, we must also remember that to an adult who suffers from daily pain, who never wants to get out of bed & complains all the time about it, they would see our girls as an inspiration for just being girls, girls who are just being girls, despite the obstacles & despite the pain. I think the definition of being an inspiration varies from person to person & quite possibly the more successful you are the higher your standards for what it means to you. Who or what inspires you personally will be different for everyone.

  2. Julie Collins says:

    Hi Karen
    That is a great link- very useful to share. However I agree with the comment above, who and what you find inspirational is a personal thing, and I personally find my son Ollie extremely inspirational just for the normal way he approaches his life. I don’t think heroes are only the people who achieve astounding physical or intellectual, musical or artistic feats. Yes, I find some of them inspirational too, but they are so far removed from my ordinary life their impact is minimal. But someone who just goes about the mundane things in life (whilst in a chronic pain or discomfort) without ever complaining, who shows patience and grace no matter the situation and who has such a wonderful sense of humour they make you laugh when you are having a “bad” day – that, is much more inspirational and powerful to me.
    Thanks for sharing the link and your thoughts.
    Best wishes

  3. Karen Karen says:

    Hey Angela and Julie, thanks for your comments. I do agree with you that what people find inspirational is variable, and it certainly is possible to be inspired by someone going about daily activities in good grace and without complaining despite being in pain. But – is someone inspirational SIMPLY because she or he has a disability, and happens to be out in public? What if said person is not in fact in any pain, or having difficulties of any sort, and is just out and about doing mundane daily things? To see someone with a disability and automatically proclaim them inspirational is sort of condescending, which is I think Ms. Friedman’s point (and certainly my) point.

  4. Suzanne Hollywood says:

    Karen. .I always love your point of view:)

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