The leaders of some pharmaceutical companies are undeterred by being caught out. There's no shame.
The problem is really so simple and banal.
It's about power.
All this is simply about power.
I was trying to prove something in an area outside my realm of competence, and I would never have been good enough.
The question is, "What must autistic people do to get autistic priorities to the top of the autism research agenda?"
And the answer is, "Honey, you gotta get power."
I thought it was about how.
No, they don't, they demonstrably do not care about the rights of autistic people with high support needs.
There are plenty of researchers who pretend to care about people like these.
But do you know who we also have a problem with? The people who give them a platform.
Her name is Elizabeth Torres, and she's not going to the proverbial White House of autism conferences.
For one, they want to be believed.
Unless parents of autistic children are regularly and publicly saying that autism research and policy that is not guided by autistic people is unacceptable.
They are wrong.
Most countries have signed the CRPD, although I suspect that many leaders probably don't realise what they have agreed to do! 😛
And because of their knowledge, proximity and power over disabled people, they create the barrier to disabled people gaining access to their rights.
Who will respect the CRPD if we don't respect it ourselves and insist on its implementation, and demand that those who violate it be held to account?
Communication is a human right.
Call on everyone in the autism industry to focus on communication first.
Dare to ask.
Dare to read.
Here are my own four focus areas from last year (and I have added a fifth since then). tania.co.za/4-focus-areas-…
Since some people working for Autistica were genuinely kind, it was easier to pull off the scam convincingly.
However, most of these still don't comply with the heart and soul or Articles of the #CRPD.
Here is why this is significant:
It doesn't matter quite so much whether we think our autism is a difference or a disorder or a messy mixture of both.
What matters is that WE HAVE A HUMAN RIGHT TO BE HEARD.
It would mean facing activists with other disabilities head-on in a very blatant public battle against disability rights.
There is more to be gained professionally from working WITH disabled people than against them.
They will hold up the shield for all to see, as though the shield feels nothing, sees nothing, hears nothing.
"Accepting" nonspeakers is not enough.
We need to listen to their goals.
When you invested a lifetime of work and earned money and fame based on a wrong premise, it's super difficult to admit you were wrong.
(If you are not familiar with the bizarre accusations that some nonspeakers face in respect of authenticity, you may have gone "Doh!" when you read that.)
One of those people is nonspeaking autistic author Ido Kedar.
They have simply moved on to criticising other nonspeakers who are still on the same journey.
If you are an autism researcher or therapist faced with cognitive dissonance because you invested your entire well-intended life in evil, just stop doing bad stuff, get over yourself and move on.
Stop making it our problem.
If you want to keep coddling your sacred anxiety and holy pride in the safe ambit of your ivory tower with your international awards from Those Who Really Matter To You, then keep trampling the UN Convention on the Rights of People With Disabilities.
We will talk about you at conferences.
We will write articles and books about what you do, because REAL LIVES ARE IMPACTED.
We will no longer cooperate with your research as willing participants, and we will no longer hand over our children to be studied either, because autistic people did not ask for this, and you refused to study what we DID ask for.
So you work to the goals of those who pay you? Then demand that THEY respect the CRPD by listening to us.
Real lives are impacted.
So, there may be aspects of the study that look like a good idea.
Don't fall for it.
Then ask, "Did autistic people ask you to study this?"
And if they say no, then tell them you don't want to support their research, because their process doesn't support the #CRPD.
If you are in autism research, you are supposed to study things that matter to autistic people.
1.) a treatment regime for hyperkalaemic and hypokalaemic sensory overstimulation, and how to adapt it for individual cases (my friend Benjine Gerber can provide them with the groundwork for this)
This is not the case with me. I do have disagreements with some, but with most, it's pretty collaborative.