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A Cooperative Community
Thursday, February 12, 2009 @7:19:13 AM
We are a part of two different disability communities. One is the blindness community, which is incredibly political. Adult blind people have cried out over the last 50 years for more self-determination, less paternalism and a reduction in custodial attitudes. It has been a struggle for blind people and the professionals that serve them to come to accept each other and work together. Blind kids grow up to be blind adults who advocate for themselves. The parents' role fades as the child grows up.
Then there is the autism community, in which the parents' role remains prominent in many cases. Many kids require a lifetime of guidance or protection. Autism still has so many puzzling aspects that the role of professionals in the science and school communities is of utmost importance. Many people who live with autism or Asperger Syndrome will not truly become self-determining, because of cognitive impairments.
Cooperation is difficult in the blindness community. Professionals feel threatened. Blind people push against low expectations. Blind adults have opinions about how well they were taught, and also take interest in the way the next generation will be taught.
Even given the normal difflculties of IEPs and philosophical differences over such things as diets and vaccines, the autism community seems more cooperative. Is that because so many of the kids will need us forever...custodial attitudes are appropriate in some situations.... we dream of the kids having full lives, but we know that independence is defined in many different ways for our kids. Is it because we all know that none of us has the answers? Why is it that autism doctors, therapists, teachers and parents can work together so well?
4 comments
on “A Cooperative Community”
 | cevans Says:
Monday, February 16, 2009 @7:27:57 AM
In MN, we're hoping the docs can work even more together. Insurances are now set up in a manner that DIS-courages cooperative conversations. The docs know the importance of working together. As you point out how we want society to better understand and facilitate our children's growth (and independence), I'm personally hoping the docs and efforts such as this (with the insurance companies) also help lead the way.
Craig |
 | lassie Says:
Monday, February 16, 2009 @3:35:42 PM
In the blindness community, the dr. has a pretty cut and dried role. Our struggle is with the people who work with our kids, like teachers and travel instructors who teach the white cane skills. Some of them pass to our kids the common notion that blind people can hardly do anything. Autism has really complicated our picture, since Anna won't/can't go to the events with other blind people that would help her feel connected there. Home is so important to her, and I guess to lots of other kids on the spectrum.
Michigan has some kind of insurance reform movement. Is Minnesota ahead of us on that?..We are often in the dark ages over here due to our economy. |
| cevans Says:
Monday, February 16, 2009 @3:44:04 PM
It's hard to say who is ahead and who is behind. Yes, I think because of Detroit (and all the related suppliers to the car industry) that MI is probably trying to put other fires out first. I've been attending some hearings at the capital where a state-commissioned committee is investigating what is needed most by the autism population. Optimistically, we'll still be years away from seeing anything happen. But the kids behind ours will benefit.
I'm sorry your daughter seems to be surrounded by some discouraged professionals. Don't you find that surprising? I certainly do.
Craig |
| lassie Says:
Monday, February 16, 2009 @7:31:45 PM
Craig, It is a strange situation because blind people have had their own civil rights movement, somewhat in parallel with the national civil rights movement related to race. So blind people have formed what are called consumer groups (consumers of services from commissions for the blind, etc). But professionals in the education/rehab community saw this consumer movement as a threat. Actually, some consumers were very strident as they came into their own. Professionals and blind consumers have had a tense arrangement since then, but it improves slowly. Anna doesn't have much contact with people who are negative about blindness, but I know they are there, from my work in parent leadership, and in the blind consumres group. Anna says blindness is just normal for her. What is interesting to me is how hard it is for the professional community to deal with autism issues within the population of blind kids. But, you know, slow and steady wins the race, so on we run. Lydia |
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