Wrestling with Inspiration Porn vs Wonder and Amazement

Have you heard of "Inspiration Porn?"  (I really hate that phrase.)  I've just stumbled across it and suddenly am really wrestling.   You could google it for all kinds of definitions but basically, my understanding is that it is images of people (typically unnamed children with disabilities) or stories of children with disabilities used to inspire others simply by doing typical things (writing/running/eating/driving/being with friends/existing).  Often, there is a caption along the lines of, "What's your excuse?"  It apparently implies that people with disabilities are inferior because by doing everyday tasks, they are overcoming great odds.  IP objectifies the diagnosis or challenges and not the person.

 Am I guilty of this?  Is this something to be guilty of?  Am I somehow excluded because I'm not joe public - I'm the mother who knows the sweat and work and tears and heartache that go into accomplishing everyday tasks?  

What's my motive, my husband asked.  My motive is generally that (1) I want to remember what we spent our days doing because I don't scrapbook and this is as close as I'm going to get unless someone can teach me how to scrapbook without all that work and mess and effort and time and organization and (2) to encourage moms who may be just beginning this journey.  The truth is, I once lay on a cold table in a specialist's office awaiting her to come back into the dark room and tell us what diagnosis our unborn baby had.  It was an agonizing wait.  The doctor came back into our room with a big medical textbook in hand.  She had marked a page with a yellow sticky note.  She flipped open that page and I don't remember much of what came out of her mouth.  As a first time mommy to be, in my cute maternity sundress, what I remember was the picture on that page.  It was a naked baby.  He was screaming - probably because he was naked and cold on a steel table.  (I now know that babies don't like to be cold and naked.  At the time as a mommy to be, I feared his screaming was connected to his diagnosis.  The eyes were blacked out, I suppose to protect his identity.  How ridiculous.  When there's only a handful of people with a diagnosis, it doesn't take much to find them.  (Side note - recently we were asked to enroll one of our children in a study.  We were assured that no identifying information would be given to the company - only their gender, birthdate, medications, and diagnosis.  Ha!  No identifying information?  Seriously?  We said no.)  The mommy to be in me wanted to reach out and grab that black and white picture of that baby off the page and wrap him in one of the beautiful soft, luxiourous blankets I had waiting at home in our nursery for our baby.  I wanted to cuddle him and sing to him.  Surely this wasn't all there was to the diagnosis?  It terrified me, also.  The baby looked miserable and alone.  Where was his mother?!

(Also another side note - that doctor had the wrong diagnosis.  Not that it mattered as far as showing us the picture but she made some key "bedside manner" mistakes with us and we informed the office we would not see her again.  In fact, her superiors apologized for her behavior.  I explained that maybe showing the parents to be pictures intended for medical personnel might not be the wisest course of action.)  I vowed in my heart that if my children's pictures were ever going to be used to help describe a medical diagnosis - it would only be pictures of them approved by me so I could be sure they were dressed cute or doing one of their many fun activities like swimming or running.  No screaming naked baby pictures!

 When we were given our prenatal diagnoses, I scoured the internet.  I read plenty of medical journals and even paid to access medical journals and files.  I got as much facts as I could.  But what my heart needed to see was reality.  I needed to see pictures of cute kids with my kid's diagnosis. I needed to see them smiling, laughing, playing, getting messy, trying baby food, playing ball, going to the beach, learning to swim, eating cake at their first birthday party, pouting in their first time out, going to kindergarten, posing with cheesy smiles under the Christmas tree, running through sprinklers, eating popsicles and all the other million things kids do.  I needed to see life and what I perceived at that time as normal. 

 I needed to see lives refined by a diagnosis  - not defined by it.  

I needed to see families that were happy and living normal lives - even lives that included doctors and surgeries and so much more.  I needed to see the whole picture.    When I blog, that little black and white grainy photo of the screaming, cold, naked baby in the medical textbook is always in the back of my mind, as is the mommy to be who is sitting at her computer unable to sleep at 3 o'clock in the morning desperate for someone to show her that her child will live a normal life and will enjoy all the magic of childhood the world has to offer.  She's in my mind because I was her.  My kids may have differences but our lives are very normal.  We have high expectations for our kids.  We expect them to just do life.   But I am often amazed at how they do life and all they work so hard to achieve.  It's not always easy and I admire their creativity and resourcefulness and perseverance.  

When I read these articles on inspiration porn, however, I fear I am somehow wrong for admiring these traits I observe in my children which so far manifest themselves in what may be perceived as doing "typical" everyday regular things for their peer group - like bike riding and running and eating and playing.  Because I am admiring the character qualities, does that mean I am honoring the person and not objectifying them by focusing on the diagnosis? Where's the line?  Am I guilty of inspiration porn?

When pregnant, we heard often were told, "This baby is  going to do something really special and amazing."   I remember thinking, Good grief!  Isn't it enough that my baby has has hand and feet differences?  Why can't he just be treated like every other baby?  Why can't he be treated normally - and have no pressure yet as an unborn infant as to what he may or may not accomplish in adulthood?!  What if he wants to be a doctor/lawyer/garbage man/drummer/maintenance man/gardner?  Of course, I expect all my kids to be amazing and do big things - but why the extra pressure on this kid before they are even born?  And such an arbitrary thing - like who decides when an accomplishment is special enough?  Does he now have to be president in order to meet expectations of doing something amazing since he is born with differences?

Do parents of infants who are born "typical"  feel this pressure from others that their child accomplish something "great."  Typically, at least in my observations, people just admire the baby's fat rolls and big cheeks and hair and ask how well they eat, sleep, & poop.  Yet we got this whole other pile of expectations put on us and our baby - and by numerous people.

I'm not sure what the tie in is here except that even prenatally, we were feeling pressure for our kids to be inspirational when all we wanted was for our kids to make choices to do whatever they feel passionate about.  Like any other parent, we want our kids to find something they love and to do it well.  We want them to choose to serve others.  We want them to be wise and discerning with how they spend their lives.  We want them to find deep joy and to feel content with their life choices.  We don't want them to feel pressured to have to choose something grand or "inspiring" simply because they were born different.  Yet, it is often in just living that they are inadvertently inspiring people.  It is in the everyday tasks that others observe their joy or smiles or hard work and are sometimes inspired.

We also heard a lot of this - "You are obviously really special parents."  Ummm no.  No we aren't.  Most of the time we don't know what we are doing - that's why we have smart friends and parents and we ask their advice all the time.  I read books and then I question them and throw them away and then cry.  We make it up as we go.  We pray about issues.  We seek counsel.  We screw up.  We ask forgiveness.  We experiment.  We figure out parenting - just like every other parent.  We aren't special.

Here's the big rub - I admit that I am inspired by my kids.  I am.  I am guilty of being inspired by my kids.  Know why?  My kids have WORKED hard to get where they are.  We have cried tears of agony.  I have watched my daughter fall down hard.  Hard.  It takes her breath away.  She doesn't have the reflexes to catch herself or prevent falls like other "typical" kids.  Falling for her is going to be a life long battle.  The bigger she gets, the further the fall.  It's gut wrenching to hear and she falls probably 5-7 times on a typical day - more when she is tired.  Of those 5-7, at least 3 are bad.  Lately, she's fallen several times and hit furniture on the way down.  I love rainy days but for her, being outside on rainy days means more slippery surfaces and more falls.  I keep waiting for the fall that breaks a bone or hurts her head seriously.   But do you know what she does every single time after fall?  She gets back up.  Every single time.  Well- first there is cuddling and rocking and often using the "boo bear" on her arm/leg/forehead/back of head.  But then, she walks again.  She cries and tells me how much she hates falling.  She says, "Not again, Mommy!  I hate falls."  My heart breaks.  But I am inspired when she gets up again.  She doesn't quit or give up.  She refuses to stop walking.  It inspires me.  It does.
Am I somehow wrong for that?

And Will?  My goodness!  My kid runs without feet!  And he is fast!  Yes - I admit, it amazes me!  He writes beautiful cursive - without fingers!  Do his peers run and write in cursive?  Yes.    My kid has hand differences on both his hands and his "normal" for writing included a surgery and now holding the pencil carefully between his hands.  It takes extra energy and endurance and concentration and a clipboard.  Goodness, I have struggled and watched him struggle for years to figure out writing.  He makes these incredible beautiful, flawless letters and he makes it look easy.  He is fast.  But I know the effort he has put into them.  I can't help but watch him with amazement.  But am I guilty then of objectifying my own child because I find this to be amazing?

Will is brave.  He tries new things and attempts various sports and activities.  He is brave and walks through doors of a new sunday school class.  He goes all kinds of places where staring and pointing at him is the norm.  I don't write about it much anymore because he is at an age now where I am extra careful with his privacy - but the reality is that he faces stares and pointing and comments all the time.  Typically, we blow it off and keep going about our business.

You know what?  I find his bravery and his energy and optimism to continue trying and doing new things and meeting new people encouraging and darn it - I find it inspiring.  I do.  So crap.  Does that make me guilty of ip?

Sometimes I blog about those experiences and hope that my stories or pictures can encourage others.  Often, it happens just because we are living our lives and people stop us to tell us they are encouraged by watching us.  Just the other day, someone told me that their teenager was convicted by Will's story to stop taking his body for granted and to treat his body better.  I wasn't sure how to respond but I suppose if this is 'ip," then many would respond with anger.  My gut reaction, however, wasn't anger.  Someone telling me this doesn't make me angry.  It makes me thankful for my kiddos and even if I don't always agree with what they learn from my kids, aren't we all constantly watching other people and learning from the way they live their lives - regardless of whether or not they have a disability?  

But, now, I wonder, am I somehow inadvertently perpetuating that belief that people with disabilities are extraordinary simply because of the disability?  Even if I don't blog pictures or stories, people stop us in the grocery store, the gym, the park, etc to tell me these things.  I'm certainly not going to hide out at home so that I don't accidentally risk inspiring people in public  with my kids who choose to live their lives with the bodies they have been given.

Know what else?  I like living a life of celebration!  I like celebrating with little walking parties when our kids walked because walking wasn't easy for them.  I like celebrating Will's cursive.  I want my kids to grow up in a house where they are affirmed and celebrated- whether its for big things or little things.  I like being celebratory and looking for things in the mundane routine of life to throw a party for!  (says the girl who just noticed she hasn't taken down her "celebrate" banner yet over the mantle from New Year's Eve.)  I love that in our local grocery store, the cashiers and baggers love Ellie and know her by name because we spent a lot of hours practicing her walking up and down those aisles.  (Wide spaces, level and hard surfaces, carts to hold onto - brilliant physical therapy practice location.)  They celebrate her because they too have seen her hard work and I love that.

I read about the image of a girl holding a pencil in her mouth to write which is considered ip -
but I think of the hours of time, the ot sessions, the brainstorming and trying to figure out the best way to help her write.  Sure - it's normal for her.  Sure - she is writing....
but it does encourage me in my own quest to help my kids write.  Am I now guilty of ip because I was encouraged?  Or am I somehow "exempt" or allowed to be encouraged as a mom of kids with disabilities - and then doesn't that just contradict the whole idea of ip being about inclusion?

Here's the thing - I like living with optimism.  I like living with wonder.  I think God created us to experience wonder.  I think He wants me to delight in small and big things.  I think there is so much extraordinary to be found in the ordinary and too often, we just miss it.  I don't want to miss it & in having Will & Ellie, I have learned how to open my eyes to the extraordinary.  I feel like my joy is often so much greater at what people would consider "typical"milestones because I know they are not guaranteed.  I perhaps have wondered myself at what my kids might accomplish.  I have wrestled with knowing one of my kids may need a wheelchair someday and the struggle that brought to me as I wrestled with not wanting to put such an emphasis on walking.  I wanted my child to know that I always accepted them exactly as they are and yet I felt I also needed to push and work with them to reach the goals of mobility.  My brain was (is) exhausted from that mental back and forth between acceptance and pushing and not being proud of my children based on their accomplishments.
(but you know, not wanting them sitting on my couch the rest of their lives because they were never motivated to achieve anything.)
(My brain is an exhausting place to live.)
(This is why I read so many fiction books, I've decided.  It's my escapism from my own brain.)
(I don't meant to imply I'm not grateful for my brain.  I am.  It just wears me out with it's back and forth and overthinking.)

I don't want to miss living in wonder.  I don't want to miss out on the everyday miracles that I have a special privilege of watching.

But, more importantly, I don't want my kids to somehow resent me being inspired by them for doing "everyday" things.   Do I need to shut down or off my natural inclination to be amazed or inspired?  Do I need to simply set expectations and when my kids reach them, set the next set of expectations without ever acknowledging or praising accomplishments because they are no different than what their peers are doing?  I don't want to offend or negatively affect my children when they are adults because I take such delight in seeing them do life and, to use what is apparently an offensive phrase, "overcome challenges?"  I expect my kids to behave and act appropriately and I think we treat them normally.  (In fact, I vividly remember disciplining Will for grabbing a toy from another kid when he was a toddler.  Inside, I was cheering and ecstatic that he could GRAB a toy from a kid with ten fingers!  But he didnt' know that.)  I catch myself telling Will and Ellie to hurry up when headed to the car.  I expect them to keep up, to carry their toys to their rooms, to eat with silverware.  We don't make excuses (or try not to) for doing age appropriate tasks.  And yet - I'm often amazed and encouraged by the fact that my kids do ordinary age appropriate tasks.

Is this wrong of me?

Should I never share my joy or blog about amazing "ordinary" extraordinary things my kids do because then it is somehow ip?

I see pics all the time on my husband's fb page of kids doing regular things - like writing, eating, jumping on trampolines, running... but if I post something like that on my blog, am I suddenly guilty of "inspiration porn?"   I don't often struggle with jealously of my mommy peers - or at least I've figured out some really great techniques that work for me when it creeps in... but if I don't get to post pictures or videos or brag on my kids achieving regular things like they do just because mine have disabilties and therefore it is considered "ip", well, I'll be jealous and resentful.  That doesn't seem fair and I love sharing pictures of my kids doing regular things!  When my friends post pictures, it's not ip because their kids don't have disabilities.  Are the rules different for me because my kids have disabilities?

It seems that many of the people offended by what is termed ip, are adults with disabilities who want to be included and seen as just normal (whatever that means) adults.  They don't want to be known by their disabilities or put on a pedestal for being inspirational in doing everyday things. Yet, I also know adults like Jon Sheptock, Nick Vujicic, and Kyle Maynard.  All of these men are amputees and travel giving motiviational, inspirational talks and serving others (like military men who are now amputees or prisoners) with their stories.  Their "disability" has enabled them and provided them with a platform and a story to share about overcoming struggles.  I greatly admire each of these guys and have made efforts for Will to meet each because I do believe they can be great male role models and mentors for him in a unique way.  

So what's a mom to do?  What's the line here?  How do I avoid ip while still marveling and delighting and standing amazed at what my children do?  Or can I just throw out the whole ip thing and keep celebrating my kids the way my mother's heart desires to?  Help!

(also - for the record, I don't like the term "disability" as it implies not being able.  I believe we are all able.  We all have strengths and weaknesses.  I don't like labeling my kids.  But for lack of a better term that is culturally understood - I go with disability.)