Monday, August 26, 2013

Awareness at what cost?

I recently had an unfortunate encounter with a graphic that snuck its way onto my Facebook newsfeed.  The picture, posted below, is of a green stiletto high-heeled shoe supposedly stomping, with the noise represented in a comic-book like burst.  In green text on the top of the graphic it says "Stomp Out", with "Cerebral Palsy" in fragmented black text on the bottom of the graphic.

When I, an actual person with CP, pointed out that stomping out CP means stomping out me, the admin of the page seemed confused, then defensive.  "No this does not mean to stomp out the person just  CP"

When I, again, pointed out that my CP is inseparable from me as a person, and used the hypothetical example of "stamp out femaleness", my comments were deleted and I was banned from the page.  So were several friends of mine who were backing me up.  Any and all "negative" comments - comments that didn't support a cure - were banned.   In other comments, the page admin and their supporters expressed disbelief that anyone would be against a cure.  CP was compared to cancer.

[March Is Cerebral Palsy Awareness Month:  "Everyone is missing the point here.  We are not stomping out the person just the CP.  Doesn't everyone want a cure?  I know I do.  I live here in NC and let me tell you they are working hard at Duke for a cure you can read about it on line.  I can't believe that this is taken the wrong way I don't see it like this.  Like I said before if you don't like what is posted don't respond and leave the site and don't come back.  There are differences of opinions here and I understand that but some of the comments are negative.  I am just trying to raise awareness if this offends you leave this is my site and I post what I want too."]

I'm blacking out the names and pictures of the supporting commentators, because I don't feel anything would be gained by putting their names and faces out there.  The page, on the other hand, is not blocked out, because people need to know which page did this.

[Why are people so simple minded??  They wouldn't say the same ignorant comments about stomping out breast cancer or epilepsy...It means we want a cure!   Why would someone NOT want a cure?  My son is 8 with mild cp and he can't run and walk long periods of time like other 8 yr olds.  Of course I Want to stomp out this cp so he can have no limitations.  Geez people, come on!]

Gee, maybe if you had actually READ my comments and not deleted them and banned me, you'd know why I don't want a cure.  My CP is no less a part of me than my gender or sexuality.  I literally DO NOT KNOW who I would be without CP - I have always had CP and I will always have CP.  A few weeks ago, exhausted, annoyed, and edgy about possibly missing a train, I told a nosy fellow elevator rider "I was born this way, I'll die this way, and I'm proud of it!" That pretty much sums it up.

And for the record?  Breast cancer KILLS.  Epilepsy?  Can also KILL.  CP does not kill.   Yes, co-morbid conditions like severe scoliosis or epilepsy may kill, but THOSE ARE NOT CP.  There is a world of difference between a condition that merely impacts the way your brain and body work, and a condition that WILL KILL YOU.

Notice that most of the commentators here are parents.  That should tell you something.

[Clint Berger:  Now that I see you don't have CP, it all makes sense.  Please stop silencing and attempting to speak for those of us who do.
March Is Cerebral Palsy Awareness Month:  I know I don't have CP but my sons do.  Not one but two.]

Being a parent doesn't give you authority over those who actually HAVE the disability you're talking about.  You are one step removed, we are none.  "I'm a parent" is not a valid argument against someone who has been living with these issues day in and day out for decades.  It's the same argument as "I have black friends so I can't possibly be racist!" No.  This is my life you're talking about.  You don't get to hijack it.  In case you haven't noticed, being a parent of a child with a disability and actually BEING A DISABLED PERSON are kiiiiiiiiiiiiind of two different things.

The admin proceeded to put up two different passive-aggressive statuses warning that any "negative" commentators would be banned.  Their supporters immediately ran to stroke their ego, again, mostly parents.  Some of the commentators declared their love and pride for their children, just the way they are.  Why then, are you supporting a page that wants to stomp out CP?

[I do not think there is anything wrong with my child who has cp!  She is perfect to me!  If this world wasn't full of cruel people and mean children who bully or tease the person or child who is different, then I wouldn't worry so much about my daughter.  She knows no different than how she is now.  I hurt when she hurts and she does.  I defiantly [supposing that was meant to say definitely] think more people should be aware of CP.  This page is brilliant & helps a lot of people!]

If you don't think there's anything wrong with your child, then why do you support a cure?  "She knows no different than how she is now".  Exactly.  Which is why I don't want a cure.  When you say "Stomp Out CP", you are stomping out your daughter.  You are stomping out ME.  By supporting this page, you are supporting the type of fear-mongering that makes people see our lives as a tragedy and something to be, yes, "stamped out".  When you support those types of organizations, those types of causes, for your disabled child, here are some of the things you want people to do to your child.  And obviously, as we saw, this is not limited to autism.  Do you really want your child to think their life is a threat to be eliminated?

You want more people to be "aware" of CP.  Congratulations, you've succeeded.  They're aware that CP is something bad, something that needs to be stamped out.  They're going to breathe a sigh of relief for their "normal child" and thank God that their family isn't afflicted with a terrible burden.  They're going to pity you and your family for being so unlucky.  This is the kind of environment your "awareness" creates.

What is your point with awareness?  Sure, people are "aware" of CP, in the same way that they're "aware" that the sky is blue.  It's a thing.  But awareness doesn't go deeper than that.  Awareness needs to be coupled with understanding and acceptance.  Otherwise, it's just shallow.  And that can be dangerous.  Here are some more important things you should be "aware" of.   (It's autism centric but can apply to other disabilities as well.)

As a parent, you are doing your children a disservice.  By spreading this kind of "awareness", you are telling your children that they are not worthwhile the way they are, that there is something wrong with them.  And by silencing the very voices that know what it's like to have CP, you are silencing and alienating the people that could help your children get along in the world.  We are like your child, more than you know, and someday your child will want to meet others like them, maybe even now.  Do you really think refusing to even hear us out will bode well for when your child asks "Why am I the only one like this?"?

You are making people aware of CP.  But at what cost?  Take a minute and think about the picture you're painting.  It's not a pretty one.

***Side Note:  "Stomp Out CP" is almost as horrifying as "Smother Autism".  And at the time morbidly hilarious because most of us can't wear high heels like in the picture or stomp.  I can stomp, but not wear high heels, actually.***

Addendum:  In response to the "Stomp Out CP" hoopla, one of my favorite people, Juniper, who's a disabled mother to a disabled daughter, created a satirical "Stomp Out Normalcy" page on Facebook, similar to Rachel Cohen-Rottenberg's "Neurotypical Awareness" memes.  Go check it out and share your stories of normalcy!


Unknown said...

Excellent essay on something so visable and hidden all at the same time. Thank you for opening peoples eyes wide!

Margot said...

wow that's harsh to people with CP. I see my CP as a blessing and wouldn't want it "stomped out"(which is like what happens to Down Syndrome babies who are aborted due to disability) I see no problem in finding a cure for those who want it but using language like "stomp out" is not the way to go about it. It implies or lives are awful and we are better off cured or dead.

However on the opposite side of the fence I'm sick of certain people in the disability community(def not you Cara! :)) making their disability their whole thing in life, using it in order to get away with bad behavior, and then turning around and saying no one should seek treatments/cures. We should all be in charge of our own bodies and should not dictate what people do with theirs unless what we do with our bodies hurts other persons body.

ok rant over. Sorry had to get that out.

Anonymous said...

I love you for this. I am still in shock and absolutely dumbfounded that people are trying to advocate for a CP "cure" - look, I know my cerebral palsy can cause major issues for me, but it is a part of me that I wouldn't trade for anything. My experiences with it have helped shape who I am. Just because I "might feel better" without it does not mean I would want to get rid of it.

Anonymous said...

Yeah, as an adult with mild cerebral palsy - as well as a disability sharing similarities with the autism spectrum - I am absolutely stunned and shocked at people like this: people who have no authority over how disabled people think or feel. Just because you have a loved one with cerebral palsy does not mean that you get to decide that some magical "cure" must be what they want. We don't have a terminal illness. We are not going to die from cerebral palsy. This enrages me beyond words.
I love you for posting all this. But it was so hard to read that woman's comments, and her supporters, without seeing red.

BiolArtist said...

And what makes it really horrible is that the stiletto heel shoe looks like a reference to "stomp" videos where women crush cute animals with pointy heels.


Yes, let's crush all the little babies who don't move like the other babies. With a big pointy heel.

Unknown said...

An exquisite piece -- well crafted and supported! So many hugs to you.

Carolyn said...

Thanks, Cara. Athena just directed my attention to this. To paraphrase YOUR statement: As a parent, I literally don't know who I would be without having a daughter with CP.

Froggy64 said...

I cannot believe this happened on a CP awareness page.

david miller said...

I find this post really disturbing especially on a CP blog. What about Down Syndrome foetus's?

Cara Liebowitz said...

David Miller - I'm not sure what you find disturbing? Maybe I can clear things up for you.

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Anonymous said...

I have cp and I would like a cure BUT that's mainly because I've started doing this crazy therapy that has become almost a game to me. I enjoy seeing what my body can learn and I will go as far as that takes me...even to the point of normalcy (which it won't ever get to)
But if I were content with my cp as it is, so what. That's my business and no one else. (truth is, I'm never really content with anything - its not just a cp issue)
I think we can all improve somehow...or change but there also needs to be recognition of how perfectly fine life can be with any circumstances be it disability or whatever.
Actually though, all that is not really why I responded. Its just babble. Your post brought up an issue that vexes me. I've noticed that some parents of kids and sometimes adults with disabilities are hostile who adults who challenge their ideas of disability. What is it they find so challenging? I worked with quite a few and ran into it several times. I feel like I never knew true bigotry until I met some of the parents I've met. I'd love to hear if you have a response..