Spectrum 10K is a research study on the genomics of autism. Millions of pounds have been allocated to the study. This article by Tania Melnyczuk is based on a response to a Spectrum 10K ambassador, who asked her in which way the project fails to align to the CRPD. The article is a work in progress.
The yellow logo in the picture above is from Boycott Spectrum10K.
CRPD basics
The UN Convention on the Rights of People with Disabilities (CRPD) is an international treaty. Many countries have signed it. The CRPD obliges its signatories to work towards representation, access and freedom from harm for their disabled citizens.
These priorities are embodied in the underlying principles (expounded in the Preamble and Training Guide), the Articles themselves, and the Comment Notes (such as General Comment Note No. 7 of 2018). In countries that have ratified the treaty (such as the UK), governments are obliged to put laws into effect to ensure that all these provisions are met. Even if the laws are not all in place yet, people in signatory countries can’t simply do as they please, because the principles remain.
Disabled citizens whose rights have been violated can complain to their Independent Monitoring Mechanism (if such a body has already been established in the country), and if the government fails to remedy the situation, the complaint can be escalated to the Committee within the UN itself.
Research ethics must be informed by disability rights
The CRPD Training Guide lists four approaches to disability, viz. the charity, medical, social and human rights approaches. The CRPD is based on the human rights approach.
Asking the ethics committees that approved Spectrum 10K to reconsider their decision would not help unless the ableist bias in these bodies is addressed. The people serving on these committees must be trained in the human rights approach to disability, and in the provisions of the CRPD and any national policies and statutes based on them.
Undoing ableism and instilling a human rights perpective takes time. It is particularly difficult if the people being trained have a lot of power. Putting people on ethics committees merely because they are respected by other researchers or have served in this capacity many times, is no guarantee that they understand or appreciate disability rights. The autism research industry is riddled with human rights violations and conflicts of interest, as this study indicates.
How the CRPD translates to priorities for research
Based on the principles, Articles and Comment Notes, the first step in autism research should be to get the research priorities from a representative group of autistic people, including children. If the country does not have a representative organisation for autistic people (with ‘representative’ being defined as per the Comment Note mentioned above), this could be done by means of qualitative research, e.g. by calling for 10,000 autistic children and adults to state their goals and priorities for autism research.
This is not the same as telling a few autistic people what you want to study and then going ahead with the research once you find some who like the idea. (At best, that would be called placation.) Researchers who study disabled people are supposed to study things that would advance the rights of those disabled people, and disabled people themselves should be coming up with the goals and priorities.
Accessibility
As per the CRPD, researchers asking a large number of people to state their research priorities would have to make reasonable accommodations for autistic people who face additional accessibility challenges related to blindness, apraxia, intellectual disability and so on.
In the light of this, a simple call right now to “send us your goals” would not only produce an unwieldy data set for the researchers, but would unfairly disadvantage certain potential respondents. The results would be skewed by the participants who have not only the context, but also the means to communicate clearly. Most nonspeaking autistic people cannot communicate their research priorities clearly because they don’t have access to suitable means to communicate anything clearly!
Communication access is a priority area for research
25-30% of autistic people have severe communication disabilities and cannot answer the question because of the barriers imposed on them by society’s failure to follow the human rights approach to disability. It stands to reason, then, that the focus should be on removing these barriers to communication. That this should be a top priority for research—not merely to enable people to answer researchers’ questions, but because communication is a human right!
The CRPD explicitly mentions the importance of researching technologies that enable communication.
To sum up so far: Autism research should prioritise the rights of autistic people. The Nothing About Us Without Us principle embodied in the CRPD (and the way it is expounded by Committee) teaches us that when it comes to research, we should ask a representative group of autistic people what they want researched. We must also place disabled people in a position to answer the question.
The greater the power, the greater the responsibility
The Spectrum 10K researchers have obtained a lot of money for researching what they think is most important. They have not asked a representative group of the relevant disabled people what their priorities are.
Naturally, some of the requirements stated here would not apply to less influential researchers without the means to get large grants. For example, if a chronically ill autistic Masters student wants to study the experiences of autistic people with doctors in her city, it wouldn’t make sense to first seek funding to establish what other autistic people want her to study instead.
Prof. Simon Baron-Cohen plays a leading role in the perception of autistic research goals (and the perception of autistic people) in the UK and internationally. Daniel Geschwind also influences perceptions around autism whilst promoting ‘therapies’ which have elicited daily protests by survivors and their allies for half a century now. The CRPD calls for freedom from such abuses. There are potential conflicts of interest in respect of the third study leader as well, through his connection to the funding organisation (the Wellcome Trust) which derives its income, inter alia, from its shareholding in pharmaceutical companies. His organisation, Sanger, has also been involved in ethics disputes surrounding its handling of genomic data.
With power comes responsibility. Yet, in spite of their influence on perceptions, policies and practices throughout the world, Prof. Baron-Cohen and his fellow study leaders have never prioritised access to communication for nonspeaking autistic people, let alone access to representation in matters affecting those who speak.
If not Spectrum 10K, then what?
To get in line with the CRPD, working on communication access would be the first step, without which the more than 170,000 nonspeaking autistic people in the UK cannot communicate their research priorities or anything else.
Listen to as many autistic people as possible. Right now, the study leaders are listening to a narrow band of autistic people. None of them are nonspeaking. Getting in line with the CRPD would necessitate listening to as many nonspeaking communicators as possible, about what helps them communicate; and then researching ways of providing those means to other nonspeakers who are being disabled by the lack of reasonable accommodations right now.
Once these studies have been done, and once nonspeaking people everywhere can communicate clearly (which would take years, because there are so few therapists to provide what proficient nonspeaking communicators say works; they still need to be trained)—then the next step would be to do research with a representative sample of an inclusive group of autistic people, asking them what else they want researched. Perhaps a few people would want research into genomics. Many may prefer for money to be invested in training healthcare providers, educators and academics in anti-ableist practices.
These steps should have been taken years ago. Communication is a human right. We can’t just surge forth year after year allowing people to live and die without means to communicate, while genomic research gets millions in funding. In the hands of the current research team, bearing in mind who they are and their level of influence, this isn’t just a “separate but also important” study goal; Spectrum 10K is competing with human rights priorities. And the right to communication is only one of many neglected human rights.
Epilogue
We are where we are today because researchers chose not to ask; they chose not to prioritise the needs of nonspeaking autistic people. Did they lack the empathy or the “theory of mind” to imagine what it would be like to not be able to communicate anything significant for years and years, or for a lifetime? As they went about their work, year in and year out, theorising, lecturing and publishing their ideas about the nature of autism, or trying to unravel the mysteries of all the heterogeneous genomes, didn’t it bother them that there are thousands of nonspeaking people who live and die without ever being known? Did their ableism and abject ignorance of real autistic people’s lives prevent them from even imagining that nonspeaking autistic people have something to say? Have any of these researchers ever had an in-depth conversation about research with even one nonspeaking person? Just one?
If so, why did they stop there?
And if they never had such a conversation, why not?
Why not?
UPDATE
The United Nations Convention on the Rights of People With Disabilities is based on the human rights model of disability (an extension of the social model), and incorporates principle of intersectionality. Spectrum 10K representative Paula Wright states that she does not support the social model of disability or ‘intersectionalism’ (sic), and does not have faith in the United Nations.