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Promoting the self-determination of people with disabilities
A message in a bottle...
An open letter from Wendel R. Simpson
Hillary Rodham Clinton wrote a book in 1996, It Takes a Village: And Other Lessons Children Teach Us
This e-mail - my message in a bottle thrown into the sea of cyberspace - is about why a village just isn't enough for the disabled and those who love them. I am hoping against hope that cyberspace may be enough, because I have tried my village, my county, my state, and my nation and find that those entities simply do not understand or care, or care in wrong, misguided, and non-productive ways. Generally, the greatest fault is that they do not consult with, nor include, those they presume to serve: who are, after all, the only ones who know about the disabilities they have to live with.
I am filled with all sorts of doubts, fears, conflicts, and reservations even in flinging this message in a bottle into the sea of cyberspace. A large part of the conflict stems from an overinflated view of myself as that person who ordinarily undertakes the advocate's role... a feeling that, instead, I should be finding the bottle and responding to its message, not launching it.
However, I am now in effect, placing the bottle and message into the currents of cyberspace, leaving it entirely in the hands of the gods of cyberspace with respect to whether it eventually reaches anywhere or anyone.
1) My son is a 31 year old autistic young man. Within the spectrum of his disorder, he fits somewhere between being a gifted student (http://amug.org/~a203/teaching_savant.html) and being a savant (http://www.autism.org/savant.html).
Besides being very bright, he is also a very talented computer artist and animator, which talents, in his case, are probably reflective of the underlying neural differences he has. Current thinking with respect to Gavin is that his artistic talents/abilities are, to a degree, neurologically "hardwired": http://www.ncbi.nlm.nih.gov:80/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10645734&dopt=Abstract
Perhaps the best description of Gavin's condition can be heard in the words of Lorna Wing, M.D., one of the world's leading autism authorities: (Minutes 10-18 are particularly accurate and balanced.)
If you desire to listen to additional authoritative information:
- Autism99
- Temple Grandin, Ph.D., best known autistic person in the world.
Autism99 - Judith Gould, Ph.D., researcher and collaborator with Dr. Lorna Wing.
- Autism99
- Tony Attwood, Ph.D., well respected clinician and researcher.
Autism99 - Oliver Sacks, M.D., well known neurologist and writer.
So, in less than a page you now know more than 99.9% of the people on the planet do about a condition perhaps you were unaware of before, as well as knowing more about my son than 99.999% of people anywhere.
2) "Then, what's the problem?"
Well, I have just described it: despite above average intelligence and great talent, society makes no place or allowances for him or people like him. He, and most of those with whom he shares the term "disabled", are all too often relegated to lives of second and third class citizenship, the ADA and other laws notwithstanding:
http://www.nod.org/presssurvey.html#survey
His condition is sometimes called a "pervasive developmental disorder"; however, the disorder really should be called by it's rightful name, "pervasive discrimination on the basis of disability disorder" or "societal insensitivity disease" - take your pick - which is endemic in our societies.
3) "Well, what can I do about it?"
I don't really know. Perhaps you may even want to close your eyes and ears and turn away as I have done so many times. However, if not, these are the things I want for my son:
- a) Caring friends in a safe and caring community, one with a healthy attitude
about life, one which will give opportunities to motivated individuals even
if disabled or "different", one which values education and democratic ideals.
Maybe that describes your community, maybe not, but it certainly doesn't describe
his present community.
b) A community which will allow him to pursue lifetime learning in his field, including graduate work. Oh, but wait, you may be thinking, of what value is learning to the "disabled"? Everything. Instead, shouldn't they be given menial, repetitive and boring tasks to do instead? No... anymore than anyone else should be. Some of the schools and programs he particularly likes are:
Sheridan: Computer Animation: One year Post-Graduate Program
USC: MFA, Film, Video and Computer Animation
Academy of Art College, SF: MFA in Computer Arts (Animation)
- c) A job/internship appropriate to his skills and abilities so that he can
feel that he is a contributor to society. Ah, some will say, but what need
do the disabled have for jobs? Everything, especially in our society in which
one's worth and value are sometimes determined (erroneously) by what one does
for a living. He has one BA degree (Computer Imaging and Animation), and will
receive another BA (Computer Animation) on June 17, 2000, while he maintains
a 4.0 GPA in his MFA master degree program. And what are the sorts of companies
he would like to work for? Why, the same one's which any non-autistic animator
might like:
Rhythm & Hues: Paid Summer Internships
And what sort person is my son as an employee? Take a look and view some of his work:
I have fought the good fight on my son's behalf year after year, but all my labor and fighting have not been enough... nor that of my village.
Therefore, if you find this message in a bottle and would like to assist by being a mentor for a deserving young man or merely want take a curious peek into the future to see what things may be like for your disabled son or daughter once they become adults, there is a private website which will allow you to do just that:
http://www.onelist.com/subscribe/gavin2000
If you have spent too much time on the beach looking for messages in bottles - and therefore have been too-long-in-the-sun so that you think that things don't have to be the way they are - or, after having been stung by one too many jellyfish, you are feverish and crazy enough to believe that things can be done to re-issue first class passports to our second and third class disabled citizens, take your pick:
Now you see, wasn't your mama right to warn you about opening some old bottle you find on the beach?Thank you and, regards,
Wendel R. Simpson (a.k.a. Gavin's Dad)
