in about the year 2000 i started doing work for autism awareness and education. i was invested bc, at that time, one of my sons (later all 3 would be diagnosed) had autism spectrum disorders. when i started researching into what autism was there was a bare minimum of information and even less that was accurate. understanding how to research was the key to my success and i realized that there are many many many people out in the real world that either have never been introduced to the research process or who are thoroughly exhausted and just can’t manage pulling the strength of complete comprehension together. how could their children benefit from a diagnosis when the parents and caregivers are stuck in a world filled with words of science and dr speak? how can you apply what you have been told when you don’t understand the language? that seemed to me to be a huge flaw in the system. those who desperately needed the information on an understandable and comprehensible level were the ones left out in the cold. a dr being able to understand is absolutely irrelevant to the lives of a family watching a loved one suffer and struggle, a family barely holding on to sanity from lack of sleep, constant self denial, consistent struggles about food, chasing shoes that are thrown out of the windows of moving cars and screaming at cashiers in grocery stores bc they give you the stink-eye are those that need to understand what is happening, not the professionals.
i think it was about 2006 or 2007 when i first heard of autism speaks, the new improved voice in the battle AGAINST autism. at the time they came out, i had no idea how harmful they would become, and i was happy to see that the word autism was getting some spotlight attention. that ppl were investing in public education and it was/is necessary. at that time the stats were 1 in 150 ppl had asd’s, now we have an astounding rate of 1 in 88. so the autism struggle went from a grassroots org to a national org with a load of money to boot. autism speaks has generous backers and quite the line up of celebrities to get their message across, but what they are missing is the ppl w autism. where are the voices of ppl w autism in the stop autism campaign of autism speaks? they aren’t there, bc autism speaks does not speak for most ppl w autism. their campaigns of fear and hatefulness of a neurological difference is not only alienating but also villainizing those w autism spectrum disorders. the platform of eradicating the neuroprocessing of the autistic is devastating and makes the autistic person feel they are not good enough in the way they think currently and since autism affects the entire brain and nervous system that controls the entire body, there is no part of them that is not autistic and being told that autism is bad is saying they are bad. autism was now in the limelight and characterized as a baby stealing monster.
i saw this same thing happen with the lgbtqa movement. there are professional groups that are set up to normalize queers. instead of demanding the respect we deserve for you know being human beings, we must conform to the standard of “normal” set by a society of ppl who really don’t want us around. we adopt the hetronormative values and mimic the way they live, talk, dress, walk bc this is the only way to get respect-to conform losing our identity and culture and history in the process.
this is happening in most movements-the vigor is lost in translation due to professional ppls having secret meetings and making compromises. this happens in the black community, the hispanic community, the muslim movement, environmental movements, native americans and first nations movements. we water it down, conforming into white culture bc our cultures cannot be accepted on their terms, we can have some sense of equality if we pretend to be wasp.
losing grassroots movements to nonprofit big corps is a compromise to justice. it breeds complacency, it encourages segregation at the crossroads of intersectionality, it drowns out the voices of those who have been denied replacing them with calm soothing voices of professional narrators. what group does a black muslim poor lesbian belong to? which part of her identity does she consider the most underfire, what part is least important to the whole woman?
we are not making room for those who are in the fight! there is no platform available for a poor man to scream from, for a woman of color to advocate from, for the prisoner to address the issues of incarceration. the humanitarian efforts are commodities at market peddled by frat boys with dread locks wearing thousand dollar suits. those who are starving or fighting for survival, those ppl who have been neglected by society are now neglected by those “taking on the good fight for their justice” and they should be thankful for the backwash flowing in their direction, watered down equality set aside for those that will adapt. the iconic woman, the iconic black man, the iconic prisoner, the iconic native…this is dangerous, this is the stripping of culture and forcing a whitewash on humanity. look they can do it, what are you bitching about?
i am confused and frustrated by the whole thing. on one hand the issues are being brought to the table and ppl are being forced to look at it, on the other hand the watered down justice and silencing of communities is horrible. i am happy we have the noam chomskys and gloria steinems of the world, thank you to political orgs for speaking for my uterus, but seeing the ppl grab justice by the throat, demanding repayment of debts bought off our backs, insisting we be heard over the voices paid by nonprofs is necessary to any true movement for radical equal rights long overdue.