August 10, 2003

Hero Joy Nightingale
Matt May (of bestkungfu blog) brought an amazing story to my attention: the story of Hero Joy Nightingale, a 16-year-old girl with locked-in syndrome. She has been accepted to study fine art at Oxford. She is "the most severely handicapped student ever to be granted a place at Oxford. She suffers from 'locked-in syndrome', a profound apraxia caused by brain damage that renders her body useless and her voice mute."

She's obviously a tremendously brilliant and beautiful young lady who in a profound way wants people to understand her. On her personal web site's photo page, she says:

"I fear imagination conjuring my features into a fictitious freakish shape, readers manipulating words such as "locked-in" and "profound disability" and "neuro-developmental disorder" with ignorance & naivity until I am not a normal being of flesh and feeling but a pitiable alien thing. The photos depict a fragment of a busy life."

She has also edited her own online magazine, which is fascinating. At the end of the first issue (of nine), she wrote the following:

"This is the pain of Frustration as I at least experience it, and it relates more to hands than voice - I'll explain about being mute in a mo. My hands are the object of my hatred and scorn because they fretfully and reflexboundly fiddle and in so doing agitate my aspirations. I long to sculpt. I long to chip marble into poetic form hue imagination into a sturdy outer reality that bellows of the music fed to me by the wind. I long to forge hot iron to twisted forms that lurk huge and somatically within plastered brain eggs of my mind. I long to weave yarns into rugs that enthrall and warm with their homespun tones and I long to reap from travel the elements of my yarns."

Looks like she'll get an opportunity to sculpt and create art at Oxford. Amazing!

She has a great story on her site about her struggles to communicate with people called "How I communicate."

"Hero" is a very appropriate name. She is definitely someone many young girls should look up to. You go girl!

- bestkungfu: The myth of Accessible
- bestkungfu: Accessibility

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