Karen Muriuki, black woman with braids

African autistics brace for an onslaught of ableist abuse from PAABA

10 November 2021 | Cornerstone Articles

"This is heartbreaking," wrote Kenyan autistic activist Karen Muriuki as PAABA officials began blocking autistic people from commenting on their standard of ethics during the launch of the organisation online. "Why silence autistic Africans who are advocating for disability and human rights? This a total violation of CRPD Articles 7, 15 and 16."

By Karen Muriuki and Tania Melnyczuk

The ableist paradigm and early evolution of ABA in the US

ABA (Applied Behavioural Analysis) is an abusive behaviourist intervention for autism. ABA was developed in the USA in the 1970s based on the premise that Western society is “well”, and that it is easier to make disabled people fit into this ableist society than it is to get society to accept and accommodate disabled people’s differences.

This ableist reasoning was used to justify whatever it might take to force ‘normal’ behaviour, even it meant subjecting vulnerable human beings to physical and psychological trauma all day, every day. Such inhumane treatment was believed to be in the best interest of the creatures* subjected to forced smiles, forced hugs, forced eye contact and many types of forced pain, such as sensory overstimulation.

* Autistic humans were not considered to be people until they had been humanised through torture.

While some now regard these early methods to be cruel, all ABA practitioners consider them to be part of the evidence base for ABA’s efficacy. To this day, ABA promotors at the American university where it all started still proudly trace their roots to these inhumane practices. People like Ron Leaf, who practiced the most extreme forms of torture, have not yet been stripped of their licence to work in clinical professions.

Modern ABA

ABA is now a multibillion dollar industry with wealthy investors with diverse investment portfolios. Thanks to aggressive lobbying, ABA is now also sponsored by the US government.

Much of modern ABA relies not on direct punishment, but on repeatedly demanding behaviour that is unnatural for autistic people, and ignoring the victim’s distress.

…even well-intentioned ableism — prejudice against people with disabilities — destroys lives.

Emily Morson: Why does ableism cause harm?

Early infiltration from the West and a failure to stem the abuse

Once autism had a name in Europe and America, Western manifestations of ableism towards autistic people were gradually introduced into Africa. Among the more abusive approaches was ABA.

Several prominent African disability rights activists actively support a worldwide movement to ban ABA. For years, Karen Muriuki and other African autistic activists have tried (mostly in vain) to establish a meaningful dialogue with parents of autistic children in Kenya and West Africa who subject their children to ABA.

A new insurgency from the US

In November 2021, these human rights advocacy efforts were dealt a major blow with the establishment of PAABA, the Pan African Association of Behaviour Analysis. PAABA seeks to formalise certification for ‘therapists’ who practice these abuses. PAABA is funded in part via the ABAI (Applied Behavior Analysis International), the same organisation that gained notoriety for providing an academic platform to the infamous Judge Rotenberg Center in the USA.

This funding is done in the form of a grant to Ashley Knochel, an American who has undertaken to help set the standards and oversee an all-Africa roll-out of ABA.

While autistic people in Africa welcome collaboration with American disability rights activists, ABAI and other major ABA organisations have never been allies. These organisations have the reputation of silencing the most vulnerable people wherever their members operate.

Africanising Western ableism and pseudoscience

ABA’s greatest marketing claim is that it is ‘evidence-based’. However, academic papers in support of ABA are riddled with undisclosed conflicts of interest, ethics violations and generally abysmal adherence to scientific principles.

Knochel’s mandate in PAABA includes adding an African flavour to the overall approach to ABA and certification along with African stakeholders. An examination of how ABA gains ground in societies shows that ABAI’s expansionist goals would be best served by leveraging African ableism. White pro-ABA autism researchers in South Africa have already set a prescedent of excluding actual autistic people from their list of important stakeholders, whilst focusing instead on their parents. In doing so, they exploited the cultural belief of some African societies that children should be obedient to instructions rather than having any right to autonomy. Moreover, by treating autistic adults as perpetual children, they have been able to largely keep them from influencing the goals, study design and other aspects of autism research in Africa, thereby reducing the quality of their own research.

This attitude and practice of excluding autistic people from decisions affecting autistic lives is modeled and reinforced by Western influencers in the African autism industry. Autistic people are seen as useful only if they illustrate or endorse ableist ideas. Inspiration porn is becoming as popular in Africa as it is in the West.

One anti-ableist African therapist who regularly consults autistic Africans has lamented how difficult it is to persuade any of her colleagues to move beyond these heavily entrenched values in which African and Western ableism have melded into a strong alloy against human rights. While some African cultures have traditionally regarded autistic people as bewitched, cursed or possessed, others have seen autistic differences in a more positive light, assigning autistic people to the role of healers or priests. But the outcome of the new hybrid ableism is that African parents are far more likely than many modern Europeans to insist that their autistic children conform to unrealistc social norms. This has created a fertile soil for ABA merchants to establish deep roots on the continent.

Ableism is a prerequisite for the adoption of ABA by any person or group.

Disabled activists want respect for an international treaty

Karen Muriuki is a leading disability rights activist from Kenya with connections to various disability rights organisations and training from the United Nations. Karen was diagnosed with autism in childhood, but was never told about her diagnosis. Besides being marginalised within her community, she faced ableist discrimination from clinical professionals using a Western medical model of disability rather than the human rights model espoused by the CRPD.

The CRPD to which Karen refers is the UN Convention on the Rights of People with Disabilities, an international treaty which many African countries have signed. This treaty is based on the principle of nihil de nobis sine nobis (‘nothing about us without us’). It obliges organisations to engage meaningfully with the people they say they want to help—in this case, actual autistic people and other groups subjected to ABA. It also obliges governments to support disabled people against such abuses.

Fear and courage

Some autistic Africans who have engaged directly with organisations such as PACA and ABAI are afraid to speak out against the abuses. Others, like Karen and many nonspeaking autists in Africa and around the world, openly condemn what is being done to some of the most vulnerable members of the disabled community.

We urgently need your help, fellow autistics and allies, to have a conversation about the violation of disability and human rights among autistic Africans in the form of abusive practices through westernised ableism and neocolonisation that is being indoctrinated to African parents, therapists and other professionals working with autistic children and adults in Africa.

Karen Muriuki
Founder: Kenyans Living With Autism

An appeal for support

“The level of misinformation around autism is becoming rampant in Africa, thus furthering the abuses, stigma, ableism we see on a daily basis,” says Karen. “The Western kind of ableism that is practiced on vulnerable autistic people was originally done in the 60s, describing autistic children as objects or broken people that need fixing. That kind of approach is now being used in African countries including Kenya. As we prepare for the International Day of Persons With Disabilities next month, my humble request as an autie is to share my plea with everyone, as we need your help in combating human and disability rights abuses on autistics in Africa. Please spread the word.”

How can parents, therapists and governments support autistic people against ABA?

“Listen to autistic Africans, including nonspeaking people, and share our words,” says Karen. “We can help you help others like us. Don’t make the same mistakes as people made in America and other countries, where activists now have to work so hard to undo the damage done over so many years. We ask governments in every African country to take steps to ban ABA.”


Karen Muriuki can be contacted via the Kenyans Living With Autism page on Facebook, or by filling in the form below.


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KEYWORDS

Nonspeaking autists’ experiences of ABA

ABA is a behaviour modification method for the ‘treatment’ of autism. It is used particularly with autistic children who struggle with communication and self-regulation. ABA is touted as being ‘evidence-based’, in spite of there being little evidence of support from the community ABA purports to serve. This article, written for a South African audience, includes perspectives of several non-speaking autistics on their ABA experiences.

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