Remember Your Okay, I’m Okay? Whatever happened to that movement? Well, you might say it found new life in the disability community. Well, sort of…
Many in the disability community are saying, “Your Okay, I’m Okay,” but their able-bodied counterparts (and sadly some disabled folks as well) are chanting, “We’re okay, let us fix you.”
How does this appear to us? Well, the loads of research on how to fix many conditions which, simply, do not require fixing. Society’s able-bodied perspective presumes and assumes anything less than perfect really ought to be “fixed”. Their own fears drive this thinking and they push it on disabled people in the name of ‘service’ or ‘assistance’ or ‘betterment’ or ‘liberating’ — I mean, seriously, they have a lot of positive speak for it.
But more and more disabled people are responding, “Thank you, but no thanks, I’m okay just the way I am.” And those empowered people are reminded on a regular basis they don’t speak for everyone. They especially don’t speak for able-bodied people afraid of being them, or able-bodied people with disabled children who haven’t figured out how to love and define their child as ‘okay’, not less than.
20/20 did a great story recently on an Autistic named Owen (check out “Finding Owen: A Boy’s Story“). Owen’s family figured out how to communicate with him as opposed to training him to communicate with them in our ablistic society’s accepted norms. The resut? Owen came to life and was able, in adulthood, to move into a more independent living situation and even discuss how difficult life was, how it was sad sometimes, unfair sometimes and hurt sometimes. And he can ask his mom why this is, and she can provide the motherly response that is how life has always been. Owen doesn’t like that answer, and who does after the love of their life has left them? Not me – I’m with Owen on that one!
But many parents are still told to discourage an Autistic child from using their language and encourage them to use society’s language. Some even refuse to communicate in the language their child develops. And major Autistic non-profit organizations continue to fund research which suggests this is the best way. But what do Autistics think?
Many of the adult Autistics I speak with say some of the programs they were put through to help them navigate their ‘perfectly ablest’ society were inhumane, torturous even. That these types of programs, which are some of the few our government funds, should be banned. Yet, these are the programs our government supports, still the programs non-profits who represent autistics get money to research and they all suggest there is something terrible wrong with Autistic people which justifies extreme measures to ‘help’ them adapt to society.
What if…and stay with me here…what if non-Autistics are wrong?
I mean, Amy Squenzia of Autism Women’s Network considers Autism Speaks a ‘hate group’ who would prefer the world be rid of Autistic people. She wrote a blog on this in 2014 which still holds true today. In “Is Autism Speaks a Hate Group?” she uses both the FBI’s and Southern Poverty Law Center’s definition of a hate group to plead her case, and it resonated with autistics. 48 of 49 comments agree with Amy and her article was reposted numerous times. Frankly, I’ve yet to meet an Autistic who appreciates any of the work Autism Speaks and various other major Autistic fund-raising groups who profit off of their condition do.
Oh, yes, non-profits can, and do, profit off our conditions. Autism Speaks President Elizabeth Feld makes $380K a year (according to Charity Navigator, which gives the $57M per year charity a two star rating and only one star for their Financials). Yet the government still gives Autism Speaks close to $600K/year of our tax money and they make over $50M from gifts, contributions and other grants. This is ablism at its best, given Autism Speaks doesn’t include the voice of autistics in any of their efforts (at least that is what the Autistic community states over and over loud and clear – and I didn’t find anything from Autism Speaks to say it’s not true). When I reviewed who comprised their board, it’s mostly venture capitalists, marketers and business people. They have 1 parent of an Autistic, some researchers (no surprise) and doctors. It’s a great board to make money with – but it neglects the inclusion of the community it serves.
Like many highly-funded organizations, Autism Speaks simply ignores the Autistics who speak against them. I belong to a similar organization. If I question any of their one-way policies, they begin to act as if I am ‘invisible’, not in the room. Any comments I make are simply ignored and given the ‘silent treatment’. I don’t mind being a barb in their side. The organization lacks transparency and tells new members they are their ‘saving grace’ and to ‘stick close’.
It takes a while for folks to figure out they are neither a ‘saving grace’ or an organization to ‘stick close’ to, and most move on. But given the lack of transparency, consistency and real support for the community they not just claim to serve, and are even a part of, it’s the least I can do to be a barb now-and-then so others can see what behind the curtain. From what I hear, the ‘silent treatment’ tactic is not really lost on my community when they see these exchanges. We are all familiar with this tactic. It is simply so sad when it comes from within. At least it is making some people think; that can only be good.
No need to be rude, by the way, just pointing out inconsistencies is enough to make more and more folks in our community consider whether the organizations which claim to be serving them, which are gobbling up funds which really should be earmarked for programs that benefit who we are and not who others would have us be, are really the organizations they want to spend time with. Because there is an alternative – and it’s a pretty awesome one too.
What if you jumped off these behemoth sized sinking ships and joined us in the love factory? We love ourselves – we do! We are lovable and capable and we do stuff and support each other and teach each other how we came to learn how to do more stuff within this ablistic society of ours. And we might not fit into the ablest society and they may not enjoy having us be ourselves or want to even work with us as we are – but give it time…change will come.
What I can assure you is funding organizations which support research to highlight our deficiencies and problems will never cure ablistic views or transform an ablistic society into an inclusive one. There is no map from here to there if we continue to use ablest terms, medical terms and societal terms to define ourselves.
And, frankly, this has gone on for so long its a real mess. Even new organizations fall into the trap of thinking the only way they can survive, given most of us live below the poverty line, is to accept money from people, organizations, businesses and institutions who are working against us and not with us. I don’t know how many times I have heard an organization tell me, “We have to use that term or we simply can’t get funding.” Really? Then pack it up now, because that funding is a death sentence and you are now part of the problem, not the solution.
In my mind I hear the devil laughing in the background during these conversations, generally right over that do-gooder’s shoulder. They simply cannot see they have made a deal with the devil and more bad than good will come of it.
So, it’s a long, hard haul when everything is already messed up and people decide to love, respect and value themselves anyway. It’s like any civil rights movement, except that we have organizations claiming to be on our side who, quite simply, are not on our side. We need to dump them, right quick, and begin organizing our love fests.
Say it with me! “WE ARE LOVABLE! – WE ARE VALUABLE! – WE MAKE A DIFFERENCE! JUST AS WE ARE!”
Doesn’t that feel good???
Oh yeah baby! I’ll have some of what she’s having!
Well, have all you like – there’s plenty to go around!