See the child not the disability

2/27/11  post by makena

I'm not sure if my mom has posted on the blog about how there was the possibility that Jewel would be filmed for a documentary to raise money for her therapies and other equipment... I read the entries my mother posts, but it is 10pm and usually at this late at night I am on my laptop editing photos quietly not thinking about anything, or I am in my bed with a book, so I can not be expected this late at night to remember things.

This morning we were sent an email asking us to make a final decision on having the documentary shot. The email told us that we would start shooting in five days.
Five days.
That thought is so scary and overwhelming to think of, because documentaries take time to plan before the shooting is even done.
Jewel's OT came over and we had dinner and talked about our vision for the documentary, our fears, and what we wanted it to be like, and that jewel would only be in front of the camera two to three hours max.
Things are rolling for the documentary to start shooting in the next five days. To be ready for that we will need to put in at least, six hours of planning.

When Mom and I were walking Jewel's therapy dog grace to go pee, we were talking about the documentary. When we came to the subject of a mission statement, I told her I wanted Jeweliana to be represented not just "as a kid with CP" but as a "full and unique child that she is." I'd like to share my thoughts on that above statement.

Jeweliana is not just a child with CP. Today we took Jewel to the bathroom at Safeway, while fundraising for a special needs camp on Maui, and the lady in the restroom said "she's a cp kid?"
I wanted to tell her that no, Jeweliana is not just a CP kid. Jeweliana is a child who has hopes to ride in the fourth of july parade, who dreams of training dragons and having a mermaid tale. She makes up her own dragonese language inspired by the books by Cressida Cowel. She laughs, has a wicked sense of humor and cried at the end of toy story 3. Jeweliana is her own complete person, not just a statistic of a child with CP.

If people are going to give us money because this documentary makes Jewel look like some poor helpless child that they pity, then I want nothing of it. Because no one needs pity. Because to pity someone is like saying they are worthless and helpless. Jeweliana is trying hard to be independant, and working hard in therapy, she does not want anyone's pity. She wants friends and more oppertunity's to shine and have more therapy. But not because she is one of many kids with an umbrella label of CP, but because when Jeweliana smiles you see that she loves to smile and makes you want to get to know her and make her smile again.

When my friends and I were outside Safeway raising money for the special needs camp jewel attends in the summer, a girl with her mother came up and asked us if we knew her friend Alexa. Yes, we did know Alexa.
The girl asked us if we knew her friends alexa. Not her friend who has "insert label here."
This girl knew Alexa as a person, they shared a history together; they had laughed together and had a good time. And all this girl told us was that Alexa was her friend.
That moment of Alexa's friend is what I want the documentary to accomplish. That they feel like they know Jeweliana as Jeweliana.

I want this documentary to accomplish what volunteering with special needs kids accomplishes: it makes you see these kids as special, but just like you. when you get to know a special needs kid you forget about their label, and they are just another face to you. When that kid stops being a disability and turns into a friend, then you have accomplished something. That is what this documentary needs to accomplish.
If Jewel gets money for more therapy or for a gait trainer, then it is a bonus.