Thread by @ekverstania

Pete was a great community connecter, a good explainer and a humble learner. He was helping people who don't usually #ListenToNonspeakers realise that nonspeakers deserve our advocacy and amplification. I am angry with the leaders of @spectrum_10K who are to blame for him going.

https://twitter.com/AmandaQuirky/status/1437322669310021636

Maybe you will say that the leaders of @Spectrum_10K are INDIRECTLY to blame. I disagree. This is squarely their fault. They enabled this, they continue to support this. They deliberately keep their ambassadors out there to say their quiet part out loud.

https://twitter.com/ekverstania/status/1437236695083241472?s=19

An organisation which finds that its representatives are not representing them well, can reel them in or dismiss them.

https://twitter.com/ekverstania/status/1437252100690415617?s=19

This has not happened.

We need to assume, therefore, that Simon Baron-Cohen and the other @spectrum_10K leaders are in full support of their ambassadors, and what they are saying and how they are saying it.

I believe that Paula and Chris reflect the spirit of the @Spectrum_10K project. They were purposefully selected and they are fulfilling their mandate.

https://twitter.com/ekverstania/status/1437362602670186496?s=19

Those of us who don't like the way Chris and Paula talk, must remember that they don't report to us. They are not here for us. They are here on a mission for an organisation.

https://twitter.com/ekverstania/status/1437242118490230785?s=19

Paula and I have very strong differences, and naturally I will present what she says from a perspective of disagreement. She does the same with me.

I do not, however, want to put words in her mouth. I would rather spell out the implications of what she says.

(At times, I fail.)

So based on all the above, and on their actions over the past few decades (which align to the words of their outspoken ambassador), the following are clear:

The @spectrum_10K believe that the human rights approach to disability is wrong, because the United Nations is a hypocritical organisation.

The @spectrum_10K team don't think it's important to #ListenToNonspeakers.

The @spectrum_10K leaders do not merely regard intersectionality as an unimportant consideration in matters relating to autism and disability; they passionately HATE that people expect them to even consider such things.

The @spectrum_10K leaders regard all the autistic academics who have expressed grave concerns about the project with utter disdain.

The @spectrum_10K leaders think that the United Nations Convention on the Rights of People With Disabilities (#CRPD), an international treaty signed and ratified by the UK, is irrelevant rubbish which they shouldn't have to adhere to.

https://twitter.com/ekverstania/status/1437177268657344512?s=19

If the ambassadors would like to correct any misconceptions or misrepresentations here, I ask that they comment on the relevant tweets rather than continuing to post screenshots of my words (those screenshots are inaccessible to some users with vision disabilities).

The @spectrum_10K leaders regard much-loved autistic community leaders who work in pastoral counselling, inspection of abusive facilities, and peer support for those with chronic health issues or suicidality, as part of a mob of trolls.

The @spectrum_10K believe that genetic research is more important than dismantling ableism, improving services, or training professionals and others with influence to listen to autistic people and create safer environments (including creating a welcoming academic environment).

The @spectrum_10K leaders believe that autistic people should not be activists, because activism means you're not acting in good faith.

At no point have the @spectrum_10K leaders said that their ambassadors are anything but AMBASSADORS; they have not been presented as 'independent consultants' or even 'crazy fans' whose views may differ markedly from those of the people who appointed them.

The @spectrum_10K leaders are aware of what their ambassadors are doing. It is all public. Complaining to them about an ambassador's alleged racist or transphobic behaviour as though it is separate from that of the people who chose them, is an unnecessary step.

The @spectrum_10K leaders have these views. The evidence is there. The ambassadors have simply ripped out and revealed what has always been stuffed beneath a thick carpet of professional decorum.

I want to talk about trolls.

During the pro-democracy protests in the Middle East (and I imagine this happens elsewhere too), women in crowds were sonetimes sexually assaulted with no way of pushing through the mass of surging bodies to escape the men assaulting them en masse.

We do not use these incidents, as discouraging as they may be, to discredit the entire movement.

Movements are MESSY.

They are NOT UNIFIED.

Spontaneous revolts cause people to unite around specific issues. Often, there is insufficient common ground to hold them together once the short term goal has been reached.

We are not perfectly united and that's OK. It's normal.

So, against that background: yes, we have trolls in our midst, just like the pro-democracy protestors had sexual predators in their midst.

Yes, we have people among us who attack others, without nuance, and call them horrible names and say that what they are doing is 'advocacy'.

Am I going to name them? No. Not now. I have seen how they deal with people who point out areas where they could do better. They rip them apart, hound them on every platform, jeer them mercilessly. And I've seen them do it in front of children.

I don't have a solution for the harm they continue to cause.

But I will say this: a cause is not invalidated by the presence of such people.

Every revolutionary movement has currents within that movement.

We must try to focus on advancing the wave.

I will not defend those people. I don't want to have to work with them directly. They've harmed me, they've harmed my friends, they've harmed allistic parents who were trying to learn.

They have obfuscated the essence of human rights, things like the right to health and the right to communication, by policing every last puzzle piece and person-first sentence and demanding an immediate transformation as a prerequisite for any engagement.

AND I WAS ONE OF THEM.

I hate puzzle pieces and I am thoroughly at odds with person-first language for myself.

But when an 'autism warrior mom' tells me that I would never understand her 'low-functioning non-verbal son with autism', I want to know more about him and more about her struggles, because I want to get to the point of hope and connection FIRST. Everything else is secondary.

I fail sometimes. I am imperfect in knowledge, wisdom, integrity and everything else.

A luta continua.

Are you afraid that we will lose this battle, that we will fail to #StopSpectrum10K? It's a realistic fear.

But remember, transformation isn't only about stopping things. It's also about STARTING things.

There are things that have foundations already, and we need to build on them. We can't ONLY be fighting all day.

https://twitter.com/ekverstania/status/1333880302087905282?s=19

I have a different, daunting, exciting revolution which calls me. It's one with sprouting seeds that are being nurtured now.

https://twitter.com/ekverstania/status/1378353804958179336?s=19

If my arithmetic serves me correctly, then my continent has around 5 million nonspeaking autistic people who will live and die in our lifetime without ever being known and being allowed to give what they want to bring to the world.

This is an unacceptable situation. I am angry that research money is being spent on genomics rather than on this far more important area of need (COMMUNICATION IS A HUMAN RIGHT!).

There are many other areas where those millions could have added real value too.

But it won't change without the effort of the people who care.

We can't allow ourselves to stop building and growing and advancing just because we're now also compelled to fight these odious researchers again.

To those of you who are autistic in the UK, feeling really miserable in the shadow of Cambridge's cloak: I am fairly convinced, based on both determination and evidence, that in some very key areas, Africans will be the ones who will save you in the end.

And you can laugh, because we're the crumbling former colonies, with potholes in roads and with electricity that keeps conking out, and with all sorts of things that you may think make us everything but influential, credible, or exemplary.

You do not stand on these mountains.

You do not see the road.

You do not know what is happening in your country already because of what Africans have done. The seeds are there. If I had the time (but I don't), I could describe it all to you.

But if all goes well, you will see.

The activist with whom I work most closely and most frequently is Zekwande Mathenjwa (@AutisticSpeak). He's 15 years old and nonspeaking, and he works full time in advocacy.

I'm about to nominate him to serve on the Disability Advisory Committee of our country's Independent Monitoring Mechanism (IMM), established in terms of the UN Convention on the Rights of People With Disabilities (CRPD).

By coincidence, the day before I told him this, he started studying the CRPD with the goal of contacting the world Committee.

I'll leave you with some of his words.