Wednesday, April 27, 2005

William's Syndrome & Small Ramble

I've just learned about William's Syndrome.

Resources for parents, friends, and family:

William's Syndrome Foundation
William's Syndrome Association

It's interesting because the social and loquacious nature of these individuals, along with the reported musical and language gifts attributed to people with William's syndrome, have led some to speculate that: children with Williams syndrome were an inspiration for folktales and legends, as the 'wee, magical people' were often musicians and storytellers.

I haven't been able to find the original source for this theory, but it appears frequently in the WS literature.

It's sad how neurological disorders have shaped our history and culture, yet, in this modern world, we have no room for differences. If we can't "fix" it, we cast it aside instead of creating a world of inclusion. Joan of Arc and Albert Einstein would probably have ended up on the streets or, worse, in a subpar-group home had they been born in the modern world. We pat ourselves on the back for eliminating some of the barbaric practices of psychiatry and neurological medicine, yet I often wonder if we've truly moved that far forward.

Example: A local coffee shop's new manager told Brother1 that he couldn't be a patron anymore because he made people "uncomfortable". Brother1 has been stable for many years; he doesn't talk to himself or hear voices. His attire is sometimes a little off the wall, and sometimes he forgets to brush his hair, but he has no "offensive" behaviors. Small towns suck--everyone knows your business, and I guess the manager knew Brother1's "history". What the manager didn't realize is that the coffee shop is Brother1's only outlet. He has buddies who come in and bum cigarrettes off of him in exchange for pleasant conversation and local gossip. He has waitresses that pay him a little attention, making him feel human. We have to be careful because he is so giving that he tips 150% sometimes, but no harm no foul. Brother1 used to be an artist, a wonderful and talented artist. Evil-crazy bug took that away from him so all he has left is time, endless-empty hours to fill. All he wants is a fucking coffee.

Moral of the story: Sister(me) of Brother1 likes to make a scene. Sister doesn't care if you lose your fucking job. Sister lives in the big city and uses scary legal terms and is sick of ignorance. Brother1 continues to have coffee anytime he wants and manager must sit there and smile.

Wow, how did I get here from where I started? Sorry, just wanted to offer WS resources.


At 9:32 AM, Blogger Jessica said...

You are a good sister, SFTR. Has your brother been your biggest inspiration for your focus of study?

At 10:04 AM, Blogger she falters to rise said...

Hmmmm...well, yes and no.

When I was 10, I became my town's youngest published poet (not really a big deal, it's a really small town). I told the newspaper reporter interviewing me that I wanted to be a biologist when I grew up, at the age of 10 mind you, and this was before my brother got sick. So, I think I was always that dorky science kid.

On the other hand, I come from a family having an unusually high incidence of neuropsychiatric disorders; thus, I'm pretty sure my family, along with a few amazing professors, influenced me to pursue neuroscience.

My brother's situation has definitely steered me towards advocacy and policy, along with changing me from a quiet, dorky girl into a spitfire of vengence. It has also allowed me to teach future neuroscientists about mental disorders in a way that most faculty here can't. First hand experience makes you wiser than any textbook.

My brother has made me compassionate, almost to a fault sometimes. That's the greatest gift one could receive, so I would like to return the favor. It's just figuring out where my talents are most needed. Research, law, private practice, etc...I just don't know yet.


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