The upcoming Disability Blog Carnival will be hosted on the theme of “participation”. Participation is a somewhat tricky subject for me, as I lost my ability to participate in the non-disabled world in many respects when I broke down in 2007. Before then, I’d been on the surface a successful example of inclusion, having graduated from a high level high school with all good grades and always having been able to live with my parents with minimal professional support. I say “on the surface”, because my almost daily meltdowns, my self-injurious behavior, my almost total isolation, my inability to speak at times, and other signs of my disabilities were carefully kept out of view.
The fact that I participated in the “real” world for so many years, sometimes comes back to bite me in the ass. It bites me everytime a commenter suggests my history does not indicate I’m autistic. It bites me more everytime someone asks me to explain why I don’t live on my own or go to school or work, especially if it is someone who is close to me.
Disabilities create barriers to participation, yet as people with disabilities, we’re forced to participate in the non-disabled community as much as we possibly can. Inclusion is touted by every disability activist, and many don’t consider the need for individualized accommodations. Note, I think inclusion is great, but I believe it is a right rather than an obligation. We shouldn’t have to prove how oh so capable we are in order to be valuable members of society.
Furthermore, the degree to which we are seemingly able to participate in society should not be used against us to “prove” we’re not disabled. It is possible that we are able to participate in community life with a lot of support, either formal or informal, or with a lot of effort. I lived a “normal” life for twenty years. Now I’m burned out and can only participate in some areas of non-disabled life, and with pretty much support. This doesn’t mean I am not a valuable member of society anymore. It also doesn’t mean that I wasn’t disabled for these twenty years – I was just able to pass, and passing isn’t always a privilege.
“I was just able to pass, and passing isnt always a privilege.” I hear you and support you! Many communities cannot support the special needs of some students because they lack the training centers, appropriate school facilities, and especially trained and qualified people to help the many kinds of disabilities that we see.
I do believe in mainstreaming appropriately. There are some physical, emotional and psychological problems that require special teachers and aides, in special classrooms. Even the classrooms need adapting, sometimes to help the students achieve their best. I think American public schools are trying. But most American schools do not get funded sufficiently to educate the students in “normal” overcrowded classrooms. It is time Americans took better care of all its “students,” so more can go further on after high school. Maybe wars need less intervention when you cannot take care of your own schools and healthcare needs.
I loved this whole post, but this…
“…the degree to which we are seemingly able to participate in society should not be used against us to “prove” we’re not disabled.”
Is so very true. I have been told that because I am young, I cannot be as disabled as I say I am; I have been told that because I am able to smile and act like a happy person that I cannot have the issues I say I have. It’s sad, and it’s wrong.
Thank you for making that point. It cannot be said enough.
VERY touched by your post
especially this
“…the degree to which we are seemingly able to participate in society should not be used against us to “prove” we’re not disabled.”
thank u for your lovely comment on my blog
I will let the hopeful parents know
Thanks for this fantastic contribution! It will be up at the Disability Blog Carnival tomorrow.
Thank you for this and sharing it. I complete agree, what a person does, or manages in ‘passing’ as a form of survival should not be a benchmark for later exclusion or lack of individual accomodation.
I hoped and wished, when my disabilities started making things more difficult that there had been some aspect of individual accomodation built into society to step up and assist. I hope that for you as well. I have not had much luck in that. But I keep wanting to believe that people want to hear all voice, see all people. I know I have learned and been woken up by listening to you voice. Thanks.
Astrid, this was such a great post. Especially…
“I think inclusion is great, but I believe it is a right rather than an obligation. We shouldn’t have to prove how oh so capable we are in order to be valuable members of society.
Furthermore, the degree to which we are seemingly able to participate in society should not be used against us to “prove” we’re not disabled. ”
Yes, yes, yes! Exactly, to all of it.
Thank you!