Tuesday, September 4, 2012

The first Ever World Cerebral Palsy Day!

Hello friends!

Today is World Cerebral Palsy day. The first. Ever.

Disclaimer: I'm a bit crankier than normal today. Here's why: as a present for World Cerebral Palsy Day, my doctor gave me antibiotics and a urine test. For a kidney infection that I have apparently had...for weeks. The knife hot pain in my back at 4 am was enough to wake me up and go to hospital.

So while I wait for the next dose of pain meds, here's a little something for YOU for WCP Day.

Part of me wants to jump and down, the rest of me wants to stuff World CP Day.

Here's why: we have: Mental Health Day. Black History Month. Autism week. Eating disorder awareness week. We have 'spread the word to end the word' - the anti-'r' word campaign.

If there is a minority anywhere in our culture, we have a whole day on the freaking calendar dedicated to you and whatever affliction, non-WASP culture, environment, religion, belief or moray you subscribe to or come from.

Where is the 'Yay! You're *NOT* special!' day? Oh, right. Every other day is Yay! You're not special day! Yay, you're not different day!

See, here's the thing: I am so torn about this. Lots of people would say that they are proud of who they are and whatever condition, package or make-up they come in. And they should be. I am proud of who I am and who I will grow to be...

I am not proud to have CP. I am not proud to have something that makes me so obviously different from you. A birth defect is not a source of pride.

If you buy a television and it is defective, you take it to the store and they give you your money back and apologize to you. A store clerk says, "I'm sorry about that. Here. Let me get you another one".

They don't tell you to be proud of your broken television. There are no 'World Broken Television' days. They have a spot for them, though. It's called the dump. Where broken things go that no one wants.

This is not advocation for eugenics.

No one ever apologized to me: '...sorry that you are part of a culture that sees you as broken, and that this culture views broken things as disposable. Sorry that you are talked to with disdain and abject pity. Sorry: no matter how hard you try or what you accomplish it will never be good enough.'

     I seem to apologize an awful lot, without much to be sorry for.

No one ever apologized to my mother and father: '...sorry that you have to raise a daughter whom other people will treat as different, weird and unworthy. She will have special designations, labels and treatment her whole life. Sorry about what that will do to your marriage, your lives together as a couple and the strength of your family.

     What ever happened to that doctor? I bet he still has a license. I doubt I ever cross his mind.

No one ever apologized to my brother and sister: ...'sorry. Sorry that everything takes longer and is more time consuming. Sorry that you feel like your needs as kids, and maybe even adults are sometimes overlooked and/or forgotten because there is so much that your special sibling needs just to get through life.

     I hope that you get what you need now. 

In spite of never getting an apology or seeing the people I love most get the apologies they deserve so very much: I don't want one. I don't need one.

This is not a pity party.

If it's not an advocation for eugenics and it is not a pity party, then what is it?

It is an admonishment. It's a great big: f*** haters!

Things like Black History Month, Mental Health Awareness Day, Gay Pride, Spread the Word to End the Word exist because we, as a culture do not treat people as they deserve when they do not fit our tight little impossible, wheelchair-inaccessible-mentally/physically healthy-gender secure-"beautiful"- English speaking-heterosexual-intelligent-wealthy-non-smoking/drinking/addictions of any kind-you get the idea-mold.

They are salves. They are 'let's just forget all that and move on because we know better now' salves that stink. Putrefaction in a pretty package.

It is real. It is there. Even for those of you who do not see it. And especially for those going through it. Denying it does no good. Celebrating it underscores (at least for me) and highlights the "I am different from you in a way that no one wants to talk about without being uncomfortable".

So we accept it for what it is and we try as hard as we can to move forward, but not on. No matter what you do you can't move on. Moving on suggests leaving 'it' there and moving on without 'it'. You move forward and you drag it with you. Because you have to. You haven't a choice.

So we have one day. In some cases a month or a week. What are we to do the other 364 days, 11 months or 51 weeks every year?

We will do the same thing we always do. Wait for the next elevator....take a 45 minute detour because the subway stop is not accessible....be unemployed/under-employed. Bristle at empty compliments and praise exalting bravery for common-place things. Sometimes, we will cry, rage, and triumph. I will pretend not to know that you look at me and feel bad for me - whether you admit it or not. We will forgive your ignorance because you supposedly don't know better. Or you should.

Today, on World Cerebral Palsy Day, I choose to see it as moving forward.

But it's not pride.

I am not awesome because I have Cerebral Palsy. I am not awesome in spite of the fact that I live with Cerebral Palsy. I am awesome. Full stop.

Good-night, lovelies! xo