Paradoxical Birthday Commandments

Hello, my cyberfriends!

Today is a special day. It's Thursday. I have the day off of work.

It's also my birthday. I'm 29.

I'm sad. I should be planning all kinds of shenanigans to celebrate another year in my life. The things I have done, will do and want to do. There are many things to celebrate and many reasons to be very happy. I know how blessed I truly am, and I am happy for that.

I am happy to live in a country where I can do what I want and be who I want to be. I am proud that our home is a place where everyone is welcome to come, and be whomever they want to be. We have worked hard to foster that.

But today I am sad.

Today is my birthday. It is true. It's my Mom's birthday, too, really. Your first baby's birth is what made you a Mama, and my Dad. Happy birthday to my parents.

It's also a death day. Today is the day that my Mom and Dad mourned the loss of the baby I should have been. The healthy, able-bodied baby that was born exactly on time, maybe a little late. Because she likes to sleep in.

My birthday makes me sad. Sad to think about what I could have been and the things that I could have done without any chains. My chair is my chain: the very thing that gives me the freedom to move and be independent is seen by others as something to be embarrassed or ashamed of.

I talked to my Mom today. I talk to my mother every day...but today I cried. And I told her how sad my birthday makes me, of all the things I could have done, or the kind of person I might have been, had I not been sentenced.

It's a crime no one committed, but I am serving time. I got a life sentence, and this is my jail. It was an accident. Something that happens; there is nothing I can do but live my life the best way I can and hope that at the end, it was worth all of the things my very young mother gave up to make sure I grew to be healthy and happy.

I know what little of what she gave up. She would never tell me that it was a sacrifice for her to raise me. She wants me to know that she did it because she wanted to, no sense of obligation or requirement. She has tried so hard to help me learn to love myself - as myself. She tells me all the time (as do many others) that she would 'never trade up', and that I am the person I am supposed to be: "Little Miss Sunshine", she said, "you still haven't learned to accept yourself".

My father's approach to life is simple. He says "fuck them. Live your life for you. People are assholes." It is a cleaner, Dad-like way of saying, "I love you. So who cares? Jimmy crack corn and we don't care". My dad and I would never have the "my birthday makes me sad" conversation. He doesn't know how to live his life based on what other people care about or think of him.

Isn't that amazing? I wish I knew how to do that. To say that I really don't care what you think of me, and to live my life that way.

Everywhere I turn, there are messages (silent and spoken) barriers (real and attitudinal) and general disdain for the lives of people who are different - not just disabled.

How do I tell my mother that I have learned to accept everything and everyone else because I want so badly to be accepted by everything and everyone else? You can give unconditional love, but you are never guaranteed that the love you receive in return comes without conditions. Mother Theresa's paradoxical commandments say, "love them anyway".

So...I love anyway. Because I have great examples of love.

I have spent most of my life defying what everyone said I couldn't do. I will freely admit that some of the things I have done, were just a "so there! Just because you said I couldn't...give me one good reason and I will do it anyway!"

Maybe that's a bit of my Dad in me.

To everyone celebrating a day of birth today, you are loved. I love you, even if I have no idea who you are. You have no reason to want to be anything more than the wonder you are. You are accepted and loved by me, a perfect stranger..because we're given "faith hope and love. The greatest of these is love".

I hope to find love this year. For myself.

Happy birthday.

Love. xo

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