I am a writer. As part of my commitment to writing, I participate in 
Disability and Sexuality: A Matter of Rights?
So I wasn't sure if I could participate in this blogging adventure, but then I met a very cool family and learned of a very cool story about them. I'm not going to give any identifying information, of course, but that is definitely not needed for this post.
The characters:
A, a 20-something woman who requires 24-hour care, is unable to move independently, and cannot speak or otherwise communicate except through body language and facial expression.The story:
C, A's mother, a strong woman who believes in the rights of individuals with disabilities and will fight for her daughter's right to have a full life until the day she dies.
A's staff members.
A lives at home with her mother, and the staff come into the home to assist C to care for her daughter.
One of the staff came into the house one day and said, "C! The Chippendales are in town! We have to take A!"When C told me this story, she prefaced it by saying that I might think it was inappropriate. But I don't. Not really. I mean, I don't know that I would choose it for my own child, but that's primarily because I probably wouldn't want to go see the Chippendales and wouldn't think that my child would want to go, either.
C wasn't totally sure about it, but A was a legal adult, so she decided to have the staff explain what the Chippendales are to A. They would be able to tell from A's reactions whether or not she would like to go.
A got very excited as they explained the Chippendales, so they purchased the tickets. The day of the outing, A allowed three people to work on her. They did her hair, her makeup, and her nails. They got her all dressed up, and off she went (without her mother, of course).
Typically, when A gets that excited about something, she wears herself out and falls asleep partway through the activity. But this time, she stayed awake for the whole show, and she got two kisses - for free!
Next time the Chippendales are in town, she'll be going again.
The important thing here is that C recognizes that her daughter is a sexual being, and that, despite the many barriers A faces in her life, she has the right to enjoy her sexuality in whatever way is possible for her. And that's why I chose to post this story for this blogging event.
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5 comments:
Hooray for C, Hooray for A, Hooray for the staff who thought she'd like to go ... well done! Just allowing the option was spectacular, adding on choice! that's even better. Great post.
Well, that's definitely a positive story, but the thing that leaps out to me is that A desperately needs an assistive communication device. If she can understand concepts to the level it appears she can, and can communicate using gestures, then she would *definitely* be able to use one - then she would be able to communicate effectively, not just with a few people, but with everyone.
Amanda Baggs's blog Ballastexistenz is about the best place i can think of starting for looking into info about AC devices, but there are other well known users such as Anne McDonald in Australia, and an organisation called One Voice in the UK. I'll try to find you some direct links...
Thanks for the idea, shiva. I don't think I'll be able to offer the suggestion, though I did think of it myself during my visit with the family. Unfortunately, the odds of me ever seeing them again are painfully small. A was also asleep while I was visiting, so I didn't get to see just how much control she actually has over her limbs. I think she really only is able to move her head and eyes. Which doesn't preclude AAC, of course, but does make it much more difficult to implement.
Thanks for the great post! Hooray that there are people with open minds!
I just so happen to have Asperger's Syndrome.;-)
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