Read: Enthusiastic, informed and ongoing

How beliefs about consent structure therapeutic space - notes from a conference paper

I was encouraged to submit a paper to the SocRel day on Religion, Disability and Neurodivergence in March this year. Neurodivergence, like trauma, is something I have significant personal and professional experience of. Although I’ve read a lot of academic work on these topics, sometimes it’s hard for me to remember that people see me as an expert because it’s not, as yet, directly related to my research.

But recently I have been exploring where personal knowledge and professional work collide usefully with research questions around the nature of personhood, identity and meaning. I’ve been contracted to produce an edited book on Religion and the Sense of Self, and I was invited to join the conversations of a working group of scientists and philosophers based in Prague, working on understanding consciousness.

In both cases, it’s not just the lived experience that I’m being asked to bring to the table. It’s about bringing something tangible, physical, and present into the theoretical space. It is, as ever, about movement and breath and meeting each other.

Anyway, the SocRel paper is only 15 minutes long, and is relatively accessible, as academic papers go. I’ve written it to get people thinking, and I thought it might get my Substack readers thinking too. So here it is.

Recent years have seen more attention paid to safeguarding the autonomy and agency of disabled people in institutions. However, bodily consent is still routinely compromised in the name of therapeutic and personal care for many disabled people, often for pragmatic reasons.

While the gold standard for ethical consent is held to be ‘enthusiastic, informed and ongoing’, how we can practise consent with people who are non-speaking, have cognitive impairments, or rely on others for personal care and wellbeing?

And is consent universal, or is it different and dependent on profoundly diverse experiences of personhood, and relationships with the world?

The importance of answering these questions is hopefully obvious, but today I also want to provoke at least the start of a discussion about new understandings of personhood, of wellbeing, and of how we find and make meaning together in the world.

Consent has long been at the forefront of disabled activism. As epitomised by the famous slogan ‘nothing about us without us’, it can be very difficult to self-advocate, in a social system that tends to treat you as childlike and deluded (if you are a trauma survivor), as broken and less than human (if you are disabled) or as just not trying hard enough (if you have a chronic illness).

Neurodivergent people are very likely to be included in all three of those labels, especially those who also have higher support needs.

Furthermore, neurodivergent differences in sensory perception, in ways of relating, and even in morality, have often been mislabelled as deficits.

Neurotypical researchers are largely bemused by autistic ways of being, relating or communicating, and an alleged link between conventional forms of communication and one’s worth and humanity, has a long history.

As a result, ‘high functioning’ and ‘low functioning’ labels, as determined by the caring and medical professions, are used to divide disabled people into two groups: the doing and speaking people, who can self-advocate and be trained as a productive, fully human member of society, and the done-to, silenced, and medicalised nearly-people, cared for according to the currently-acceptable level of cultural compassion.

From refrigerator mothers to theory of mind, it wasn’t until the rise to prominence of autistic researchers of autism that neurodivergent deficits have even begun to be accepted as differences.

The most well-known example is perhaps Milton (2012: 884)’s description of the ‘double empathy problem’, which reveals “a disjuncture in reciprocity between two differently disposed social actors” – neurotypical and neurodivergent, alike in their bemusement at each other.

But that double-blind empathy is ironically epitomised ten years later, by an article by Hu et al. (2021), infamous among autistic activists, that soberly identifies the region in the brain responsible for the alleged ‘excess of morality’ exhibited by autistic people.

Nonetheless, much has been written in the decade between those two publications that not only challenges the neurophobia of neoliberal capitalism, but sensitively debates the push and pull of impairment versus difference, personal impact and social context, to ask: what might thriving look like, not just for autistic people who can self-advocate, but for the wider neurodivergent community, in all our difficulties, our awkwardness, in all our dysfunction and our diversity?