This online panel discussion from 16 December 2021 is the fifth in a series of discussions within the Autistic community to progress towards a ban of all forms of Autistic conversion therapies (including ABA) – in Aotearoa New Zealand and beyond.
Panellists:
- Tania Melnyczuk, Founder, Autistic Strategies Network, South Africa
- Karen Muriuki, Autistic Self Advocate, founder of Kenyans Living with Autism and a Bridge Kenya CRPD-SDGs fellow, Kenya
- Fiona Clarke, Autism consultant and disability activist, United Kingdom
- Kim Crawley, Cybersecurity researcher and writer, Hack The Box, Canada
Facilitator:
Jorn Bettin, activist, Autistic Collaboration Trust, and knowledge archaeologist, S23M, Aotearoa
Topics and questions explored
- Which national campaigns against ABA have already explicitly referenced specific clauses within the CRPD, and linked them to proposals for implementation within local legal and regulatory frameworks?
- How do we approach our governments? What are the correct steps? To what extent do we need to consider local variations in the approach to be successful?
- Who are our potential allies and what strategies we can use to engage them?
In case you have not already done so, please also sign the current petition to ask the Aotearoa New Zealand government to investigate the consequences of all forms of conversion therapy, including conversion therapies that target Autistic children, which are often branded as Applied Behaviour Analysis (ABA) or Positive Behaviour Support (PBS).
Note: all international support is welcome as well. Those who don’t reside in Aotearoa can sign the petition with postcode “0000”. This allows us to easily distinguish the level of local support from international supporters.
Transcript
Jorn Bettin:
I’m based here in Aotearoa New Zealand in Auckland, and I’m really looking forward to this discussion. We started off with these panels earlier in May this year. So it’s now half a year later, and at the time already I wanted to have people from all over the world and I’m really excited now to have people here from Europe from the UK and from South Africa and from Kenya. We’re keen to start. Kim, do you want to introduce yourself? You’ve been here before.
Kim Crawley:
My name is Kim Crawley. I am in Toronto, Canada, so in a completely different part of the globe than where Jorn is in. I do cyber security research and writing. I received a formal autism and ADHD diagnosis a few years ago at age 35 and my ideals and my views are pretty well aligned with the rest of the group here quite frankly.
Jorn Bettin:
Fiona do you want to introduce yourself?
Fiona Clark:
Yes, hi! I’m Fiona Clarke and I live in Scotland and I was diagnosed 13 years ago, a year after my youngest daughter. I wear various different hats relating to autism themed things. I’m a disability activist, an autism consultant, I’m a committee member of the Autistic Mutual Aid Society Edinburgh, and I train employers on supporting Autistic employees, and have my name to a few other things, and I’m very happy to be here.
Tania Melnyczuk:
I’m Tania Melnyczuk from South Africa. I’m the founder of the Autistic Strategies Network that’s Autistic Strategies.net. My focus areas in activism are health, the rights of non-speaking Autistic people, and I also have a special focus on amplifying the voices of African Autistics. As you can see I don’t look terribly African even though I’m an eighth generation colonist, but the majority of Autistic people in Africa do not look like me, and do not have the same struggles as I do, they’re different, so it’s in getting focused on that. In that process within my own province I’m also on the board of a provincial disability rights organization that’s been going for about 20 years, and some of my focus areas there are on abuse, through chemical restraint for example in schools, but ultimately also in what we’re dealing with today.
Jorn Bettin:
Thanks for these introductions. We’re still waiting for Karen to join us from Kenya. So while we are waiting, maybe we’ll just start with the first question around some basics. I thought it’s useful to ask around the table here which national campaigns against ABA have already explicitly referenced specific clauses within the CRPD, and linked them to proposals for implementation within local legal and regulatory frameworks?
Earlier this year in September here in Aotearoa we put in a submission for a bill to ban conversion therapies for LGTBQ communities, because that bill was designed around that particular focus group, and the thrust of our submission was that it’s just not right to limit this bill to one group of target people. In our submission we only tangentially reference the CRPD. People would have to follow the reference to see exactly which clauses and so forth. I’m wondering Tania, whether in your work you’ve done this in more explicit form, and Fiona, I’m also curious whether you’ve already made that point in your locality.
Tania Melnyczuk:
Okay, I’ll go first, because mine will be quite short. No. We also have people proposing a bill at the moment to ban conversion therapy for Gay Lesbian and Intersex people, who I suppose they would they wouldn’t really yeah maybe they did not as well . But I haven’t been able to reach the politicians. I went through all the dips that they said you need to do, emails wise and so on, and it has just struck me recently that we have, within my disability network, somebody who’s actually a parliamentarian. The network is fairly small. It’s only about 70 organizations. He’s quite a prominent member, so that’s going to be my next port of call.
The rest of the process needs to go via a different route. The one thing is going through politicians, but the rest of the process can go via what we call the South African human rights commission. And because of the CRPD’s independent monitoring mechanism. Establishment started in 2020, but the process is not quite complete because lockdown happened just after that, and everybody was in turmoil, and then suddenly they as an organization were dealing with other abuses. But that process is now getting to completion, and I’ve nominated an Autistic person to the advisory body to that mechanism.
So that’s going to be our other channel. But in answer to your question shortly, no we have not pointed to specific clauses. I do know some of the ones that I want to pick on, I was just hoping Karen would be here, because she’s our African CRPD expert, and she’s coming along now.
And even though they haven’t done that step in government, she’s probably going to. What she usually does is she says this violates clause 15 or 14 whatever.
Jorn Bettin:
Excellent, I think Karen is still muted. Let’s see. Hello Karen! Well, in the meantime while Karen is sorting out the audio, Fiona, do you want to comment from your Scottish perspective?
Fiona Clarke:
Yeah, it’s interesting, because in the last year, I think things have been getting quite visible about human rights rights-based approaches CRPD. So looking at the link with LGTB+ and trying to bring in banning all forms of conversion therapy, along the efforts of banning gay conversion therapy, that’s quite work in progress, and it’s just very recently that a member of Scottish parliament, when they were discussing the gay and LGBT+ conversion ban, said “isn’t there some sort of link with autism as well”. That was great, that that was raised, so that’s been captured and details of those discussions have been kept. So there are now big next steps to have. I am aware in other parts of the UK, and it may be here in Scotland too, when I have raised about linking in the efforts of the UK parliament with the LGTB+ efforts, there is a bit of a disconnect there. The net response I’ve had is that ‘We can’t comment on autism, because that’s a medical thing, so we can’t comment whether these approaches are good or not, because autism is medical’.
So we’re not quite working together. There needs to be a lot of discussion opportunities for that, because clearly people are not on the same page. But along that though, we had a new Scottish parliament this year, and one of the things to come out of that was a commitment to incorporate four of the United Nations human rights conventions, including the Convention on the Rights of of People with Disabilities (CRPD) into Scottish law. That’s a huge thing, that’s going to take up years of course. But what that’s enabled us to do is to start having discussions now, about what that means for people with disabilities. We are starting to have that discussion at the highest level Scottish government, to say we need to ensure that things are rights based. But a lot of people don’t actually know what that means, so individuals and government don’t actually know what rights people actually have, and I can expand on that later, in terms of education and in terms of the discussions we’ve been having. So the Scottish government, in terms of autism policy, have been saying ‘we want to do better’. The Scottish autism strategy ended at the start of this year, and looking at the new leadership structure for developing policy, there was a commitment, and a want, and a will, to say we do want to do better, and we do want to meet human rights, we do want to be human rights based.
So that’s a good opportunity for those who have a seat at certain tables, to be able to explore what that means in a general sense, and not necessarily about referencing any specific interventions or treatments, but from a general concept. And on top of that, it’s actually been a really good year up here in terms of developments, from many different directions. So because of the human rights breaches that occurred with COVID, Scottish government committed a big review on the future of social care. There was an independent review that was published earlier this year that made 53 recommendations for improving adult social care, and a big ethos amongst that was taking a rights-based approach. As part of that review they did meet with Autistic people’s organizations and disabled people’s organizations in order to input into that review. The new parliament has also taken that on board.
So what I’m seeing is a wonderful opportunity where the language of “we want to be rights-based” and “we want to take a rights-based approach” we know “we need to change that paradigm and have a paradigm shift” is there. Whether people know what that actually looks like, what it means, is another question. But I’m involved with the autism leadership structure, looking at mental health as the first area to pilot a new way of working, and I was in a privileged position to present to the Autistic advisory group and Scottish government policy reps about what the rights-based approach really means, and what involving and listening to disabled people and Autistic people and their organizations means.
So whilst we haven’t got anything specific, we’ve got a nice little foundation now to play with you could say, to build on.
Jorn Bettin:
Yeah, I think you raise an important point, that actually the whole topic of human rights is not front and center for most people, and the level of understanding of where this whole topic is coming from. I think there needs to be education at ground level, and then from that perspective by the way, Tania I really appreciated the video that you had put together for our earlier panels as a result of not being able to participate interactively. I think that video, which is on the Autistic collaboration website, is a very important video. There’s a transcript there that we can draw on, and I think that provides a very good first level of education regarding this particular topic. But even beyond that, maybe there’s a need for even more fundamental education, because especially here in Aotearoa or in Europe, people may not be thinking that there are human rights violations in their own countries.
Tania Melnyczuk:
The CRPD anticipates that politicians and elected people are not necessarily going to be versed in these things, and the CRPD provides training materials for training people like parliamentarians and people in decision making legislative capacities and so on, on the CRPD. There’s actually a pretty good training pack. There’s a training manual, there’s training slides, which are available on the United Nations website, because they know that people are not necessarily going to know this. You don’t get elected because you were so anti-ableist, you get elected by the majority of people who are quite ableist, so yeah.
Fiona Clarke:
In Scotland we’re using the ‘panel principles’ as an approach to structure what a human rights based approach can look like. It takes a bit of work to really get your head around what they mean, but then it really helps to set the framework for ensuring a rights based approach, and I don’t know if anyone’s familiar with the ‘panel principles’.
P stands for participation – so that’s meaningful participation, where everyone has a right to participate in matters about their life. What that looks like can vary ,and at what level, but they have a right.
Accountability – so clear and accessible courses of actual action and remedies when things aren’t working as they should
Non-discrimination – equality, so we need to look at the groups that are more likely to be disadvantaged or not have access and prioritize them to level the playing field.
Empowerment – so that’s the point that Jorn mentioned about education of people, and empowering people to know what their own rights are, and those who have responsibilities to understand what rights people have.
Legal – so it’s embedded in laws and understanding the legal rights of people.
The principles are quite interlinked, and it’s not a linear process, but by reflecting on those principles as a continuous process, they focus on the whole idea of the human rights convention being about the state’s commitment to improving on their human rights. It’s an improvement process, it’s a continuous iterative process. We’ve found the panel principle has been quite useful.
Jorn Bettin:
Kim, I’m curious do you have any perspectives there on what’s going on in Canada in terms of human rights?
Kim Crawley:
Oh yeah, absolutely horrible, because the Ontario provincial government funds ABA and that is the one so-called treatment that they fund. It’s absolutely disgusting and horrible and I’m so glad that it wasn’t funded back when I was a child. Thank goodness we have, as you probably know, Autistics 4 Autistics (A4A) Ontario, trying to fight that as much as possible. It’s so infuriating, because even our supposedly left-wing politicians are like “children with autism need this so badly”, and it’s a violation of the UN charter for people with disabilities. What really infuriates me is there are a number of politicians and advocates in in the United States and in Canada, who are singing from the rooftops “we banned conversion therapy”, and just saying it like that implies that all conversion therapy was banned. And into their ignorant asses, the only conversion therapy is LGBTQ conversion therapy. A lot of Autistic people are LGBTQ, a lot of Autistic people are trans, some Autistic people like me are cis and heterosexual, but it shouldn’t matter, and it’s absolutely horrifying and it makes me so mad.
Jorn Bettin:
Thanks! We’re still waiting for Karen from Kenya to join us, unfortunately. We’ll see when she’s able to. The next question would be how do we approach our governments, and then what are the correct steps, to what extent do we need to consider local variations in approach?
One thing that I would like to just alert people’s attention to in terms of going forward is that pointing out these violations is one thing, but then we also need to spoon feed politicians what to do about this, how to to approach this, and in this context what can come in quite handy are the Design Justice Network (DJN) principles, in terms of involving the people affected, centering them, giving them a voice and so forth. I’m just wondering, here amongst this group, have you come across the Design Justice Network Principles before? If not, then I’m intending to write an article about this, and how this can assist Autistic people in their struggle for basic human rights, and in terms of ensuring that support systems are being designed that meet our needs.
Fiona Clarke:
I haven’t heard of that, but I have come across a few other guidance documents, Autistic Mutual Aid Society Edinburgh for example have one on their website, ‘Nothing About Us Without Us’, so that’s referencing what meaningful participation looks like. Our Scottish human rights commissioner uses a number of descriptions about what it should look like too. It’s about participation, being active, accessible, meaningful, and that everyone has a right to be involved in matters that impact them. And that right, that involvement in decision making and public policy, is echoed throughout the CRPD and other articles within the main UN declaration too such as article 12.
It’s the responsibility of those who are making policies, I mean that’s what the UN says, it’s their responsibility to identify who has the rights to participate, who are impacted by these decisions and to involve them.
I’d like to read out a quote what the UN special rapporteur on human rights said in 2015. I put this in most of my presentations, because I think it is quite powerful. It says:
In many countries Autistic persons lack access to services which would support on an equal basis with others, their right to health, education, employment, and living in the community. When available services are too often far from human rights friendly or evidence-based, …
It makes me think about PBS and ABA as soon as you get to that point
…and justified many times as treatment or protection measures, violate the basic rights, undermine their dignity, and go against scientific evidence.
They’ve actually quoted and talked about the issues of Autistic people, and in 2017, about disabled people in general, they continue to say, people with psychosocial disabilities – you could say autism would fall into that too, are particularly an issue with prejudice stigma misperceptions harmful and negative stereotypes, and promotion of the medical model despite being consistent with a social model of disability, which is what the human rights convention is loosely based on. So that’s when we get this real problem, where systematic ableism in our society is going against this idea of dignity and respect of disabled people, and right to be true to who they are.
Jorn Bettin:
I think one of the challenges around Autistic people is that the stigma is such that we are not necessarily perceived as being fully human. Human rights are for humans, and so if there are these people who are apparently not quite “qualified”, then other people end up deciding what rights are right for us. Just the other day I came across some bizarre logic along these lines, that certain things are just not for “these types of people” to decide, which is a blatant violation of human rights. We maybe just need to explain this again and again, that we are humans, and we’re just different enough, where others end up dehumanizing us, but that shouldn’t in any way take away the human rights that we have.
Tania Melnyczuk:
Something that is often thrown in is the difference between people like us, the people who are speaking here, who you wouldn’t necessarily know were Autistic, unless we’re having a meltdown or we stimming or we raise some very stereotypical Autistic interests for example, and those other Autistics, which generally means nonspeaking people with high support needs, or people who very visibly use a different kind of prosody or something like that.
Now coming back to what you said earlier about involving the actual most affected people. A person like me wouldn’t have been subjected to ABA even if it had existed when I was at school, partially because my mother would have prevented me from going there, she just wasn’t that kind of parent, but also because I wouldn’t have been severe enough. I would have been quirky, and the thinking would have been “she will still be able to cook” because I’m strong with academic skills, which tends to be a measure of your coping ability apparently. Don’t don’t ask me how many of my friends who’ve got genius level IQs have actually had a really really hard time in life. One of the challenges here that we need to face is that people who have been traumatized by ABA are, when they are put at the forefront, which is where they should be, they are also at the forefront of being potentially attacked.
I have fellow activists in South Africa who are nonspeaking, who have high support needs, who are quite prepared to talk against ABA, and who have their parents trepidation and permission to do so, because they’re still under age. They are like “I don’t care” because they know that they have rights on their side, and they also know that they have supporters on their side who are going to stand up for what they have to say about what they experienced in ABA. So that’s the good thing.
At the same time we also have actual Autistic people in South Africa who will aggressively campaign against those very marginalized nonspeaking Autistic people, to shut them up, and to speak out in favor of ABA. They would be people who are not the most affected people, not the people who themselves have been harmed. In fact even one person who has who had ABA herself when she was a child said “and my son was fine, and you just got to do this, otherwise I wouldn’t have been able to get married, get my degree” and so on, as well as some people who haven’t had ABA, who don’t know that much about it, but who perhaps feel like “yeah if I’m connected to these people, then I can make a name for myself here”, whatever the motivations may be, but who speak scathingly about those who have been through this, and who say that they’ve been abused, and then they call it “alleged abuse”. So that happens.
I would say the majority of Autistic people in South Africa don’t have access to just about anything anyway, so they have nothing to say, because they don’t know what exists. But our goal, and that’s why we focus on this, even though ABA isn’t the most prominent thing happening like in Canada for example, is because it is expanding. It’s expanding very aggressively, it’s expanding into charity funded things, and the philosophies behind ABA are pervading into special educational needs schools and informing areas where they shouldn’t actually have any kind of say or voice.
Fiona Clarke:
Karen’s just joined us which is fantastic.
Tania Melnyczuk:
I just want to add one more little thing, and this might horrify people. We have a Malawian in our African whatsapp group for Autistic people, but we also have one or two people who are not Autistic, a therapist and a parent here and there, and they although it’s not mainly for them, a parent of a nonspeaking child took her child to the psychology professionals, and they said he should have dog training. And I’m not being sarcastic in calling ABA dog training, they literally said he should have dog training, and they were quite upset with her for not wanting the best for her child, because dog training is what is best for children according to their training. This person is in the whatsapp group, so she’s well supported. She’s also in contact with the mother of a nonspeaker in South Africa now who’s really supportive to her. She comes from a small villa village in Malawi. But aggressively, this type of approach is being put into there, whether you call it dog training whether you call it ABA. That is what is happening.
Karen will tell the rest of the stories of what is happening in Africa. I’m really glad you’re here now. I know it was tough to get through traffic.
Fiona Clarke:
Could I just make a comment before we do say hi to Karen. Ironically the clinical guidelines in England and Scotland do not support ABA programs for Autism, but we have a different brand that is being pushed to grow a brand of ABA called Positive Behaviour Support. So when I’m looking at efforts to raise issues it is Positive Behaviour Support for us, because that’s what’s coming through the back door. An attempt for behaviorism to grow, with a new sort of glossy image of PBS.
Tania Melnyczuk:
Ironically or interestingly, there’s something in South Africa called Positive Behaviour Support as well, which I thought was that, which is like ABA without adversives supposedly. I spoke to the person who’s like really pushing it, and he said no it’s not that, it was this, and he gave me a list of the things that it is. It’s actually not the same thing. This makes things even more confusing.
Jorn Bettin:
Can we give Karen some time to introduce herself? I’m conscious of time here, and I’m really looking forward to hearing from Karen. So great to have you here.
Karen Muriuki:
Hi everyone, my name is Karen Muriuki. I’m so sorry I’m so late. I was held up somewhere. We had carol singing, just in time for Christmas. I am a Bridge Kenya CRPD-SDGs fellow, and I’m also a founder of Kenyans Living with Autism. I’m super excited to learn so much about the reason as to why we really want to have ABA banded globally, and especially now that it is very rampant in Kenya, because there’s a huge support from parents who support this, and there are various institutions that offer that kind of therapy. So yeah, thank you guys.
Jorn Bettin:
We went around around the group with one questions so far, where I asked basically how far the CRPD has already been referenced, and specific clauses have been referenced, in campaigns in various countries. I think, to sum it up, at this stage we’ve all been looking at the CRPD, but so far we’ve not systematically referenced the CRPD and used this treaty and other treaties as a key tool to point out that ABA is actually a human rights violation, and therefore should be banned. So getting away completely from the the other arguments that are typically used, where people point out the harm that is being caused by ABA, but then we get very simplistic and of course unfounded pushback from those who argue “but this seems to work” and it’s so-called “evidence-based”, which is not I think an avenue by which we can get much mileage. It’s so easy to come up with simplistic counter arguments to all the evidence that the Autistic community is providing. So I am just curious where is this at in Kenya, because Tania told me that you’re very well familiar with the legislation, and I assume you’re in a good position to provide guidance on where we should be going with this.
Karen Muriuki:
I would quote article 15 and 16 of the Convention where persons with disabilities must be protected from all manner of abuses. That also applies to also article 17 of the Convention. We want to quote those three articles when it comes to banning ABA globally, because those are the main articles of the Convention that are so critical in ensuring that no Autistic person has to endure abuse, has to endure so much torture, because here in Kenya it is so rampant. Unfortunately there’s so much support for ABA, and [that will not end], unless we create awareness on why it’s bad, which we can do under Article 8 of the CRPD, which is about awareness creation. We need to invoke Article 8 to just create awareness as to why ABA is bad, and listen to the survivors of ABA, and also include nonspeaking people. Nonspeakers are very important, they have been left out of the equation. For me, what we should be invoking is Article 8, Article 15, Article 16, and Article 17 of the UN CRPD Convention. That’s basically it.
I wish I would have my paper, but it’s in my it’s in my bedroom. Is it possible, can you give me time to just go and pick it up?
Jorn Bettin:
Yes, yeah.
Tania Melnyczuk:
Maybe while Karen is doing that, I can also add that I have an Autistic collaborator as part of the Autistic Strategies Network who is an attorney, and she has pointed out some of the laws as well in addition to that that we can look at. There’s also the United Nations Convention on the Rights of the Child, which when you enmesh these two, and there’s actually some people who have done academic work on this too, if you take both of those together, then you get a different picture of it, because some or many Autistic people who’ve been submitted subjected to ABA are younger, they are under age. Plus in addition to that, we have some particular laws about consent, which are already in place. One question is which CRPD clauses apply, but as Fiona has also pointed out, not all of those clauses have yet been enacted, and made into laws. The CRPD in terms of human rights type treaties is one of the fairly younger ones. I mean it’s been around for a good amount of time, but we know that the wheels of justice take a long time to turn, and then new governments get elected, and they’ve got whatever the top of the news is as their focus area.
These kinds of things take a long time to change. But in South Africa we’ve been a constitution based country for quite a long time, or at least since 1994. So laws since 1994 have started to put the constitution into place. It doesn’t mean that everything is always very well enforced, and it also doesn’t mean that people always know that the laws exist, but the laws around consent that children have, the latest work on getting conversion therapy added into that, is actually not that much of a novel push, it’s just that people have realized that there has been a loophole in our laws, and that this loophole needs to be closed, because in terms of our constitution this is not okay.
However they have not realized that conversion therapy applies to more than just +LGBTQ people. Karen over to you.
Karen Muriuki:
So what we’re going to be referring to if we’re going to ban ABA, we’re going to be referring to Article 15 of the Convention. It says
“Freedom from torture or cruel inhuman or degrading treatment or punishment. Countries are to ensure that no one is tortured or treated in a cruel inhumane or degrading manner. In particular countries are to take steps such as making laws or other rules to make sure that people with disabilities are not forced to take part in medical or scientific experiments.”
Now this article applies to ABA. ABA applies what article 15 of the convention is saying [banning].Under article 16 it says
“Freedom from exploitation violence and abuse. Countries are to take approaches and steps to protect people with disability inside and outside their homes, from all forms of violence and abuse, and from people who try to take advantage of them.”
Now these are people who are ABA therapists and whatever, who
“provide help and support for people with disability and their families and cares including those teaching them how to avoid recognize and report violence abuse and people who take advantage of them.”
I’m not going to go through a lot of the clauses of article 16 because it’s so relevant, but I think the most relevant article is Article 15, which actually talks about freedom from torture, cruel inhumane or degrading judgment or punishment. Now in this case ABA falls under under that article, because it violates Article 15 of the Convention, because when you look at that particular article, it speaks about exactly what [ABA is]. Look at the Judge Rotenberg Centre, how those Autistic people have been degraded . We need to really just speak about it, and let a lot of people just take steps to protect others from such inhumane treatment and what ABA is doing.
I covered quite a lot today but I can go as far as I can go as far as article 16. The third article 16c says
“Make sure that protection services take into account a person’s age, gender, and disability”.
Article 16d says
“Make sure that facilities and programs for people with disabilities are monitored by authorities that are not biased.”
16e
“Help the people with disability who have been taken advantage of or abused recover, and get back to living their lives in society like they are used to, and put in place laws and policies including those focused on women and children to make sure that violence and abuse against people with disability are protected, investigated, and where appropriate persecuted.”
What do you guys think? Do do you think that we should apply article 15 and 16 of the Convention in banning ABA?
Jorn Bettin:
I think from what you are reading there this all looks like a very obvious approach. I mean it’s easy for us to provide evidence of all these things that are obviously banned basically by this treaty. I think the angle that we can probably take in most countries – I think the framing is important, we can probably state that in most countries the current legislation is simply inadequate. It’s not that there is the wrong legislation, it’s just that there is nothing in place, or if there’s something in place, it’s completely incomplete. It’s via that angle that we can make it easy to just enact the treaty. We can help the politicians and the legislators to come up with with legislation that actually protects us, and then also, combine that with recommendations as to which things could possibly actually improve the supports made available to Autistic people.
I think before you joined Karen, what I mentioned were the Design Justice Network Principles. I think those ten first principles are very straightforward. Are you familiar with the Design Justice Network principles? Because I think we’ll need them, or they can be a very powerful tool to move to a better place, and not just to clamp down on what people are doing now. I think parents are also obviously always looking for “how can I then support my children if ABA is no longer the thing”, right? Then it’s important to say, in order to design any system that can work, Autistic people need to be centered. The Autistic community needs to be listened to, and so far what I’m seeing amongst the establishment of autism professionals, the involvement of Autistic people, the involvement of the Autistic community, doesn’t really happen, or it only happens on a token basis. So we have this entire group here, and “yeah we need to involve Autistic people, so we’ll get one or two of them in here”, and ideally those that don’t make too much noise here. That’s not centering Autistic people. We need to make clear that that’s so far from reaching the mark.
Karen Muriuki:
It’s true. Even the same thing with me, by the way. I’m in a group whereby it’s just myself and another Autistic young man, just your experience you know blah blah blah blah blah. I was like okay, this is ok, I’m not going to go further than violating their rules, because there is also another thing I also read about their manifesto, because next year it’s our election year in Kenya. We’re going to be voting next year in next year’s elections. It’s an election year next year. So I came up with a manifesto and I was like okay does it I question that manifestos are not not based on our own experiences when they do not involve us in decision making matters.
That means that you’re not only excluding Autistic people in matters to do with decision-making mechanisms that can help any Autistic person’s strength, but to ensure that we are better represented. So I think if you’re coming up with a manifesto for autism, just ensure that Autistic people are involved, speak to them, but don’t come up with your own manifesto that does not include actual Autistic voices out there.
Jorn Bettin:
Yes. I think both Fiona and Tania want to comment here. I don’t know who was first. Fiona, do you want to make a start?
Fiona Clarke:
I just really wanted to make a comment that all the so-called ABA professionals, practitioners, are claiming actually we’re making outlandish statements by saying ABA falls into these categories. “It’s not harmful, it’s supported by the main health bodies in the US, supported by these, how can it be harmful?”
So I think that there is something there that we need to be informed about, that supports the evidence there is for harm, the evidence that supports the fact that the quality of the evidence base is incredibly low, and if we’re going to be able to just park them there.
Jorn Bettin:
On that note already a lot of good work has been done. We’ve very clearly made that point in our submission here in Aotearoa, and I’m sure you’ve made that point many times. Increasingly we have available reports from ABA survivors and not all of them are comfortable speaking on camera and they shouldn’t need to be because they’ve already been highly traumatized. We don’t need to re-traumatize them, but we have their written accounts and so forth, and that should be more than enough to counter any sort of simplistic arguments ‘Ah well where where is the harm?’ And I think we shouldn’t actually spend too much time on this topic because it’s so obvious. I think it is easy to explain this to the wider public.
I’ve made this experience if you explain and show the evidence to average people who don’t know much about or anything about autism, you just present them with the facts, they immediately get this right, and that’s ultimately our big audience.
Fiona Clarke:
This is the key to tackle this because if we meet the CRPD in terms of meaningful involvement and participation of the people who are impacted, then we get the voice at the table to articulate that side. So it’s not just the one side that’s coming across, so we can bring in that the UK NHS research body has published a paper that confirms that the risks and harms of these interventions aren’t understood, they’ve not been looked at long term, and so it’s all short-changing everyone.
We’ve got the Cochrane, which is an international umbrella organization of many research bodies that conclude it didn’t support ABA interventions. We’ve got the US department of defense now. So, you’re right. I think that’s why it’s even more important that we focus on getting the right people at the table. Because if that happens, and we’ll get the other side put forward, it’s not just a one-sided story that comes through.
Tania Melnyczuk:
I wanted to link to what Karen said, and comment also on something that came through in the chat from Michelle who is from South Africa. She’s an educator from South Africa. She said that nonspeakers’ testimonies in court are not being taken seriously. I’ve certainly heard reports of this as well. Like reported abuses, it could be sexual abuse for example and so on, and it’s just, ‘they’re not credible’.
We’re working on that quite strongly with professionals, and I’m talking here about people like speech and language occupational therapists, because there is strong support, even if there is also strong opposition from the ABA people, but there is strong support among professionals as well as among certain parents against ABA, against abuses in general, which happen in a professional setting, and in a country like South Africa where there is so little therapy for so many people, why are you still focusing on this why are you not focusing on getting the the help to those people who have nothing at all, but you’re keeping yourself busy with something which very often just reflects reflect rich kids, and then also those sponsored by the rich organizations in their charity ventures. Because if these standards are put there as being what the rich kids are supposed to have, then once the poor kids get therapy, they’re going to be getting these therapies.
We have to clean up what exists already before we can roll out anything, and that counts for other abuses as well, such as chemical restraint in school. The ones who are managing to get into school are being submitted to chemical restraint. You think that’s just not going to happen suddenly when poor kids get access to services, you know the standard of service can’t be like that.
This is what i’d like to say to Michelle in terms of encouragement: Please feel free to get in contact with me after this, because there are professionals who are consistently working at this whilst there are some parents who, after the kid has been through trauma in ABA, experience two things.
The one is shame, the lids fall off their eyes, and they get an epiphany and realize that they’ve been involved in something which was bad for their child, which they never intended. I mean nobody puts their child into ABA because they want to punish their child and they hate their child. Maybe that happens, in fact actually there are a few people who actually do do that, but that’s really the exception. Most people are doing it because they want their child to be okay, but the definition of okay is influenced by a society’s … you know, in the past we used to bind Chinese children’s feet, so that they’ll be acceptable, so the thing is that the parents have the shame but also, they are traumatized by this whole experience.
The parents are also threatened by the ABA people. Some of it is overt, some of it is kind of veiled, the kind of way in which gangsters say to you I know where you live, it’s those kinds of threats. I haven’t said I’m going to come to your house and do anything, but oh you know I know where you live. So that kind of thing definitely happens from people who leave and who would want to talk.
So what happens is parents say ‘Yes, all this bad stuff happened to my child’, and they will talk to me. They’ll secretly talk to me send me a secret Facebook message, talk to me on whatsapp, pour out their hearts and do to one or two other people, but as soon as you say to them ‘We’d like to, with full protection of your name, we’d like to use your testimony, then it’s something like, ‘Oh no no please don’t bother me!’. And this happens to therapists too. They’ll run out of the country out of fear of where they’ve worked before.
And when you say to them ‘can you please testify?’, there are people in the ABA industry who will contact them abroad, and who will spy on them there as well. There’s certainly a strong element of threat and of fear that is keeping people quiet.
In spite of all of this, there are professionals and there are survivors who will stand up and you will openly say ‘this is wrong and this is beautiful’, and they’ll publicly say that, and it’s those people, those allies who are just like, ‘this is just wrong, these kids told me this in therapy’ and I’m getting this message from other children, and the ones with communication disabilities are telling me this, they’re the ones who are most subjected to it because people think that they can’t they don’t you know… It’s as Desiree Pele, who is an ASC specialist in South Africa, once said, a silent victim is a perfect victim, for anything, you know the ones with without their credibility. That’s why we’re so strongly looking at those loopholes and working on that and putting together groups to ensure that those voices are not discredited.
Jorn Bettin:
I’m conscious of time here. We’ve got another session tomorrow. There’s lots to talk about. What you were saying just reminded me of how important it is to tackle some of the ableism and the myths and the fears and the stereotypes at the root, at the source. We have to ask: Where do parents pick up these fears and where do they start to get paranoid, and it starts I think when they visit their GP or pediatrician who may tell them that there’s something wrong with their child, and how that is framed. Since I’m doing work with the healthcare sector anyway, this has led me to focus on education of clinicians and healthcare professionals, not in any way actually focused on autism professionals, but all the other medical professions, because talking to the autism professionals to some extent was a very slow route, or a lost cause depending on who you’re talking to.
This is something that I’m working on and anyone who’s interested in supporting this can please get in touch. We are developing a curriculum to educate clinicians and healthcare professionals on not only what are Autistic people, but we’re educating them on the neurodiversity paradigm, on the neurodiversity movement and on the fact that there’s such a thing as Autistic culture, we’re a community.
Most medical professionals have never heard about this. What I also know from working with the healthcare sector, and I think every Autistic person should repeat this as often as possible in order to reduce the stigma out there, there are many Autistic healthcare professionals out there. Some of the best clinicians are Autistic, it’s just very few of them dare to say so openly because their own sector discriminates against them to such an extreme degree. That’s a huge topic, and I think by offering education to all these professionals, it’s the first step towards not only educating these people about Autistic patients, but also allowing them to understand that amongst their own community there are probably a number of Autistic colleagues.
Tania Melnyczuk:
I’m working together with the Down Syndrome Organization as well, who already have made some inroads in that training in our province. I’m going to be kind of latching on to that to be able to … I’m focusing provincially on healthcare professionals before I try to attempt to go nationally, just get some success down here firstly, then we can run it up.
Karen Muriuki:
I think in my case we need a lot of awareness for us, because you see now ABA is widely supported in Kenya, and when you try and engage professionals who have been in this industry of ABA from those guys from America, the ABA people from America, and when you try and tell them it is wrong. they will silence you. So for us, I think we need to start from scratch, maybe just to educate them about this, maybe to come up with a strategy for us as Kenyans because now we’re still lagging behind in terms of how we can explain about autism from a human and disability rights model, but we need to start from the village level because not a single person knows about autism. You find that people are just being hidden you know people are killed and tied to trees, so I think we need to start somewhere in our case, and we need your help because I know it’s not very easy for us to start working on a ban, but we want to do it gradually here in Kenya, so that at least parents are aware that there’s certain abusive therapies that should not be practiced here in the country.
Jorn Bettin:
Thank you. Maybe we just go around the table for some closing thoughts on this session, and maybe on what some of us want to talk about tomorrow, because I think several of you are going to be there tomorrow as well. Kim, do you maybe want to make a start?
Kim Crawley:
I am so glad that everyone here is doing everything they can to advocate. It’s just, it’s so tremendously disturbing that we have to deal with this.
Jorn Bettin:
Thank you for making your time available, it’s been great having you on several of these panels, and I think you’re there tomorrow as well, so really looking forward to hearing more from you. I really enjoy this.
Fiona Clarke:
I think this has been great to have this topic and to get us together because one of the many benefits of taking a rights-based approach, if you do it properly, it creates a framework to resolve conflicts and disagreements and for me that’s a really good way forward because you know, it’s getting the right people at the table, it’s looking at proper evidence-based stuff, and it’s all about consent isn’t it?
I mean how can anyone, whether it’s a parent speaking for a child or an individual, give proper informed consent about an intervention upon them, when the risks aren’t understood and so it can’t be done with consent. So I think that focusing on a rights-based framework is a really good way to try and deal with this issue.
Tania Melnyczuk:
I think I’d like to take my time to thank Karen for being here and to just laud Karen for the effort in Africa. There are so few Autistic Africans in Africa who even have a public voice, but who use that voice to stand up for the rights of others and to speak in a society which largely does not want to listen to them, and to push for that, and Karen has taken tremendous strides in this year in getting the CRPD training, in sticking it in there, in continuing to work and lobby alongside other disability rights organizations relentlessly even though you will not see, … if you’re looking at a curve, you’re not going to see that thing peaking now, and she does not give up, and that is really what it’s going to take.
I was last night in a very encouraging session on decolonization, in the speech and language therapy professionals, this is led by professionals. They’ve been at this theme of decolonization for four years, and now suddenly the interest is there. They presented at ASHA, and suddenly within the interest group growing out of this, they are talking about all the things we’re talking about, but from a different angle. They’re talking about genuine liberation, people having agency, having a right to say what you want, in spite of having very noticeable disabilities, having the kind of disability that requires a lot of support, but still to have agency under those conditions, and it’s encouraging because. I’m seeing that there is a thrust towards these things. We’re going to be at this possibly for a long time, we’re going to face a lot. But things do change eventually.
Jorn Bettin:
Thank you. Going forward there’s an opportunity to build strong alliances with other marginalized groups and with people who have an interest in social justice. That’s why I mentioned the Design Justice Network, and this might actually be something that could be of interest to you Karen as well. I discovered this network last year and I’ve started a neurodiverse collaboration channel within that network. There is a significant number of Autistic people on that network. It’s highly intersectional so it allows us to build alliances in various geographies. I’m very keen to collaborate further with you. I’m going to invite you to our online workspace, keen to take this forward.
Karen, I’d like to give you the last word.
Karen Muriki:
Despite having come home so late, I really want to thank you guys for hosting me in this panel. I’m so excited to be a part of this. This is just the beginning, we need so much support, all the support as Autistics we need that, and becoming the first ever Autistic participant in the Bridge CRPD fellowship, it has really widened my approach as an Autistic person to be learning about the CRPD, but also be a part of the International Disability Alliance, and because there’s not much Autistic representation, I felt it was time that I needed to be a part of this. I’m so looking forward to projects that you have lined up, and I’m so grateful to be here, and thank you for hosting this webinar Jorn, Kim and Fiona and Tania, thank you so much guys.
Jorn Bettin:
Thank you. Our collaboration has only just started. We’re all in this for the long haul.
Karen Muriuki:
And you could also try and collaborate with the International Disability Alliance, at least to go global, because they’re doing a lot of work on disability rights, and I think we could go as far as now expanding our network as Autistic people, so that we have the numbers. Even if it means even being part of the Bridge it’s fine, you can also be a part of that. The Bridge are all about the CRPD, and now we can now put that into practice, in ensuring that we put an end to ABA for good.
Jorn Bettin:
Excellent, I like those last words. Thanks everyone and we’ll continue these campaigns. Take care.
Fiona Clarke:
Thank you for making this happen.