This is one of my responses in the webinar.
About the movie I want to start with a comment. What I absolutely love about this movie was the utter genuineness of autism. And highlighting how others treat autistics is both DARKNESS and HOPE but there is a chance to BELONG.
To give you a perspective on what autism can look like, A little more about myself, On the disability front, I do have significant challenges that present multiple obstacles to my everyday living. Having limited communication skills is just the tip of the iceberg of these issues and I do need constant care for most aspects of daily living. On the other hand, I like to think I also have strengths which have carried me here all the way to graduate school where I hope to do meaningful research that contributes to knowledge and solutions in the autism space.
I happen to straddle aspects of two often seeming disparate worlds. So I will go to the HEART OF THE DEBATE.
It troubles me that there is such a divide between both worlds, when I think ultimately both worlds often have the same long term objective. I often feel we are wasting time and resources arguing with each other instead of getting real work done.
I don't think it's an either-or situation. That it has to be this model or it has to be that model, with no room for negotiation in between. That it is a pure Medical Model which says the solution lies in medicine alone or a pure Social Model which says society has to accept and accommodate us and nothing more needs to be done.
I agree that all of us need and yearn for that ULTIMATE GOAL OF BELONGING, like what we saw Donald Triplett was living and experiencing with his community in the movie. That is what the Social Model is. That is indeed the ultimate dream.
But do you think that same community would be as accepting and inclusive of an autistic adult who had constant meltdowns, who was displaying self-injurious behaviors, who had significant social anxiety and a range of health issues to boot. Guess who is left holding the baby, so to speak. It comes down again and again to the family to cope and manage the best they can in terms of finances, resources and time. No wonder those families ask, what after us.
Believe me, life is far from a happy optimistic picture for not just the families but for these autistics too. Even providers don’t want to work with us, let alone society. I have peers stuck at home because no adult day program will take them due to behaviors. Group housing does not want the adults with behaviors. So where do they go? I have peers who can have a dozen seizures a day. I have peers who have to be on the toilet all night due to gut problems. Sleep for just 2 hours a day means both the autistic and family are sleep-deprived. And this stuff does not magic away in adulthood. Providers just get harder to find as you age, as everyone wants an easy case. I’ve had providers quit on me after just 2 days. The happy life of Donald Triplett will slip further and further away.
I want and yearn for belonging but I’m also beginning to realize that perhaps there are some missing steps, almost like accommodations to how to help adults and kids with more significant challenges. Maybe those solutions lie in understanding physiology and in underlying health and medical issues.
Unfortunately any movement towards those solutions is deemed as the evil medical model and therefore taboo, which is very frustrating. We are conflating health issues with cure. We are getting sidetracked honestly with this debate. I don’t think anyone deserves to be engaged in self injurious behaviors and be experiencing extreme mood swings which make inclusion almost a non starter. No one deserves to wake up in intense gut pain like me in my younger days and have it be thought of as something that can only be addressed with behavior therapy. And when behavior therapy does not work, because you are looking at the wrong thing, you are pushed into an even worse special education classroom as then you are deemed in capable of improvement and inclusion. Any dream of belonging goes up in smoke.
If your body internally feels better, and you have less health issues it will reflect in outward happiness and a better quality of life. What’s wrong with finding solutions? What’s wrong with looking for solutions on multiple fronts. We can all agree our environment has gotten more toxic and it is causing more and more significant health issues world-wide. Maybe some of our solutions are somewhere in that arena. Just medicating us with psychotropics can’t be the only solution, which also have their own long term health effects. Proactively taking care of your health and well being is not pathologising. We have to research solutions, so that guys like me and others with more significant issues can also dream of moving about in society with ease, and have a chance at opportunities and belonging like Donald Triplett.
At the same time I am so incredibly amazed by the strengths and possibilities I see in the autistics who are able to get out there in society and be able to avail of opportunities. There is so much unlocked TALENT and potential which can bring about significant changes in the world. It is very critical for autism to also be looked at from a STRENGTHS-BASED perspective for that acceptance, inclusion and belonging piece.
In fact, I would like to see this TALENT HARNESSED IN FINDING SOLUTIONS for the ones with more significant issues, so they too have the opportunity of inclusion and belonging. Solutions lie in many fronts, from medical research to policy to societal attitudes to caregiving issues to inclusion. We also help solve the unemployment problem this way by making everyone across the spectrum, especially those who have the desire to work, become part of the solution for all. So it can be a win win for all.
I also want to point out to a Sins Invalid principle of Disability Justice which says when you address the needs of the most marginalized, you address the needs of all. In fact I would point out that I admire that Donald Triplett is a healthy active senior but I doubt if many of us will be as healthy. Current research seems to point to a lot of health issues we are going to have as aging seniors. If you get a chance read Alice Wong's piece on caregiving for her recent health crisis. Isn’t it better to find solutions on both health issues and caregiving now when we are able to do something about it rather than when we are all tottering senior citizens. So I want every autistic and family member and ally to think about how they can be part of the solution.
So it's almost like we have different degrees of needs and some of us have legs in many issues so we need solutions on many fronts. Why then are we having factions and fighting?
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