This week is another week that America will be subjected to claims of our inhumanity and blamed for social problems.
This is Autism Speaks. You can read about their latest press release, another event where they don’t bother to actually value the voice of autistics. Now, what I write below is a parody of the horrible announcement they posted on their site. And, yes, I know there are wonderful parents out there (I shouldn’t have to say that – it’s an indication of the lack of power we have when we do have to say that, despite never saying that there aren’t good parents – people somehow assume bad motives and intentions, not good ones).
So, what is my problem? I’ll try to explain it this way:
We’re told that we’re three million that are missing. Apparently Autism Speaks is looking for us (maybe they should try listening, we’ve been screaming).
We’re told we’re gravely ill. No, our stomach is sick, but that’s because of the rhetoric. Many of us are quite well.
We’re told that we need the Army, Navy, Marines, and Air Force to find us. We’re told we need the National Guard to find us.
We’re told they will keep looking for us.
Yet for the most part the group making these claims has lost touch with three million American children, even as they beg for more money from the nation. Yet we speak. Why won’t they listen? We’d be easier to find if they used their ears.
We’re told that we cause families to split up, go broke, and struggle. Never to bond, love, or share. We’re just the bad.
No more. This week in Washington, D.C. we will gather an unprecedented number of autistics, allies and real experts in every area of autism to protest their three-day summit. We will demand a national response. Or even just an acknowledgement that we – the people they claim to want to help – exist and have a voice.
Don’t we deserve it? America has always been about equality and representation. Even when we lose our way, we eventually discover it again.
Yet, they seem to have forgotten their children – and these children are part of our future. And us autistic adults are part of our today.
Each day across this country, those three million moms, dads and other care-takers I mentioned can make a choice. That is – if they aren’t seduced by the fear mongering of Autism Speak’s rhetoric about lost and sick child. Truth be told, many of them aren’t, at least according to Autism Speaks, supposed to enjoy their children—or when they do – they are supposed to be fixing their kids—never just sharing time. They should be wondering what they will try next. Will they try new drugs? A new social skills program? A special school? A new doctor? Sometimes – silence would be better than supposed advocacy.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.
This is Autism Speaks.
Life is lived moment-to-moment. In joyful anticipation of their child’s next move. But they’ve been told to live in despair. In fear of the future and the today.
This is Autism Speaks.
On the good days my family and all the others out there – millions around the world – see the sun shine and their family’s smiles. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all stressed out about lack of services to help them live with dignity, without being told they are broken or defective. Maybe they are up yet again crying, just wanting someone to see them for who they are. To listen.
Maybe their parent has been trying to drug them.
Maybe their parent has said they want to drive them off a bridge, to kill them.
Maybe there is a waiting-list for supportive housing, for personal aides.
Maybe their parents won’t let go.
Maybe they don’t have the money to pay a special lawyer to fight for the services they need to survive, because we’re too busy funding things that won’t help.
This is Autism Speaks.
If any of this sounds familiar, you know Autism Speaks. And if you know Autism Speaks, you know we are looking at a monumental failure in advocacy. And, we have no voice in it.
What I described above is really just the beginning. In the next years, Autism Speaks will likely continue down this path. Ignoring the voice of autistics.
And, what about us autistics? How much can we hateful and ignorant rhetoric can we stand? How long can we fight against people telling us that our voices don’t matter because they know someone who is “nice” and part of Autism Speaks? How long will it be before the exhaustion makes us ill? How long before we break?
And, we they do – who stands against the hate?
There is no national will to stand against this. It’s nicer to think that Autism Speaks is just good, but misunderstand people.
So let’s dial back a minute and consider the many times Autistics have reached out. Do we have real autistic representation on Autism Speak’s board? Are we even one of many voices at the table discussing what should be done to people like us? Are we anywhere close to hearing a guarantee we will get a fair shot to be heard?
We know autistics from minority and lower income families are even less listened than other autistics, so they lack even more representation – look at Autism Speaks’ board and count the number of minority and low income board members.
How about in advocacy? Is there a desire to include us at all? Are we listening to autistics tell you about what does and doesn’t work? Is there collaboration?
But – there is no attempt at collaboration.
Yet – our future depends on it.
Financially, we are blamed for costing 2.3 million dollars to care for during our lifetime, and it will be well over $137 billion dollars for all of us. No mention is made to our contributions, only our costs. Yet Bob and Suzanne Wright, the founders of Autism Speaks, made plenty of money from the government – much more than 2.3 million dollars Bob worked as an executive to GE, which recently cost plenty to the tax payer – and has for many years. Maybe it was worth it, as I’m sure many of the contracts delivered value to us – our money was invested and spent well. Others, not so well. But any dollar spent for us is seen as waste. Never mind where these numbers come from – I dare you to find the autistic adult who will receive 2.3 million dollars of services.
But money aside, these are our lives. We have a lot to say about our lives.
What is our message?
We can’t even craft one – without even one seat at the table.
Close your eyes and think about an America where three million Americans and counting largely cannot influence the decisions of government and support agencies about how they are tried. Imagine three million of our own – unable to even get a seat at the table to talk about the things we need so we can eat, so we can bathe, so we have a roof over our heads, so we can pursue our love lives, so we can live.
This is a national emergency. We need to be heard – NOW.
We are heading to Washington with a call for action and a call to be heard – NOW. We are asking Autism Speaks to respond to autistics with the urgency we deserve – NOW.
Autism Speaks – here we come – because we need to be heard – NOW.