People asked me what I think of the petition from Autism Western Cape (AWC) which is to be handed over to Parliament in a march on 21 May 2021. When I saw the petition, I wrote the letter below to Mduduzi Dube, the Managing Director of AWC. Upon receiving his reply, I signed the petition. I encourage you to do the same, and to join the march. — Tania Melnyczuk
Dear Mdu
Thank you for highlighting some of the important problems faced by autistic people and their families in the form of a petition.
I would very much like to encourage others to support this initiative. Throughout lockdown I have been helping poor disabled people and their families where they were unable to get support from larger organisations (including AWC). For fundraising, I’ve worked through small charities like the Jason Foundation and Raising Hope, parents of autistic children and adults and other supporters. I’ve collaborated with therapists, educators, and community activists. I’ve also encouraged direct donations to affected individuals, to buy food. Health concerns and the dire lack of educational support from government are frequent themes of conversations with the parents I talk to.
But I just want to clear up some things before I get people to sign the petition or join the march. (There are also a few items on the petition which I would want to see worded differently, as they do not correctly represent the priorities of nonspeaking autistic people.) I have raised some of these questions with AWC before, but I haven’t had any clear answers, so I will ask again, including some new questions. I’ve marked questions in bold to make it easy to skip to them.
Implications of the CRPD: Representation
AWC does not represent autistic people, as per the requirements of the CRPD (see Section II.B of this comment note). To be a representative organisation, it would need to have a board membership of over 50% autistic people, which it doesn’t currently have. To best represent autistic people’s interests, some of these people would have to represent the demographics of the autistic population, e.g. it would need to include Black, nonspeaking, and other diverse autistic people. Parents and caregivers are important stakeholders too, but they do not speak on our behalf.
The question is, does AWC intend transforming to become a representative organisation, and if so, when? If not, can we talk about ways of ensuring that autistic people are represented at least through consultation, since our province does not have a formally registered representative organisation for autistic people? It is only right that if you are going to talk to government about autism, actual autistic people need to be regularly consulted on the goals of such discussions, the approach, and the message which is being put across. The lack of a consultation process is currently contributing to the perpetuation of abuse and neglect. We are not even on Level 4 of Arnstein’s Ladder of Participation yet. We are merely being informed of what your plans are.
Input into approaches used in schools and institutions
Right now there is no way for autistic people to directly influence policies or practices in schools and institutions other than approaching parliamentarians as individuals. Through the years I have frequently come across abuse and less-than-helpful practices, with no formal mechanisms for addressing these issues. At the moment we’re working to change this via the SASLHA Special Interest Group (SIG) on Autism established in February, but the process is slow, and could benefit from more collaboration with other organisations such as AWC, provided that AWC can commit to listening to autistic people first and foremost. This SIG is eventually intended to become cross-disciplinary. I proposed for the group to include one of my fellow activists, Zekwande Mathenjwa, who is nonspeaking, and this was unanimously accepted. Zekwande is a survivor of abuse at the hands of educators. He recently resigned from school to pursue activism full time.
I frequently correspond with nonspeaking autistic people like Zekwande locally and internationally, and there is a great need to listen and change the way things are done for these most marginalised people in our community. It is no coincidence that some of the participants of the internationally acclaimed short documentary LISTEN (including the narrator, Bobby Shabangu) are South African: it’s because we work at this. We want to be able to give access to AAC to nonspeaking autistic people throughout Africa, and we know that many will never be able to afford it. (Read more here.) We know that we need to do fundraising and lobby governments for these services. But we have very little access to decision-makers in existing schools which could benefit enormously from listening to actual autistic Africans.
I collaborate with autistic activists in Kenya, Algeria and other African countries as well. Some of them in Nigeria and Uganda are too poor to maintain regular contact via WhatsApp and social media and the rest of us are making plans to try to donate our own money across borders to them just so that they can stay in touch. Parent-led organisations in other African countries are also not listening properly to autistic people who want to be able to improve practices, to prevent what happened to them when they were growing up.
I am afraid that if we approach government to just duplicate what we already have in special needs schools in South Africa, we will also be duplicating everything that is wrong in these schools. Can we talk about this, so that the input of autistic people regularly feeds into goals and policies? There is also a wealth of support available from survivors of abusive institutions in other countries too, and we can learn from them to start helping some of the people who are being abused locally. We can also avoid future abuse by learning from these survivors. Some have high support needs. Some serve on the boards of disability rights organisations.
Research
Autistic people are currently not treated like the primary stakeholders of autism research by the most prominent researchers in South Africa. This is a violation of the principles of the CRPD. AWC is an award-winning organisation and we have scientists in South Africa who have also won awards for their stakeholder engagement. But actual autistic people did not issue any of those awards. Autistic people, the main stakeholders, are not being properly consulted. I have asked before how to get actual autistic people’s research priorities to the top of the autism research agenda, and I was blocked. We are not requesting for this to change. We are demanding that it must change. Autistic researchers who attended INSAR 2021 were horrified at the way these scientists openly talk about autistic people. There are scientists who support abusive practices that violate human rights. They design their studies without autistic people guiding them. They interpret the results without autistic input. The goals of some of these studies are off the mark. Are you going to help us to change this by getting autistic Africans’ research priorities met, to meet the needs of the poorest autistic people, or are you going to tell autistic people what you think is best?
Autistic people want to help other autistic people. We want to make a difference. Here are some priority areas that some of my fellow activists and I have for 2021.
Where would you like to see autistic people on Arnstein’s Ladder of Participation by the end of 2021? Do you have plans for how to achieve this, or do you need some help in figuring out how to do this?
Tania Melnyczuk
Autistic Strategies Network