When I first started writing about my lived experience as a survivor of childhood abuse and neglect in 2022, I certainly did not expect to be invited as a guest speaker by a mental health charity soon after. They were interested in me giving an online workshop on dissociative identity (without the disorder, thank you), and I was absolutely thrilled at the prospect.
However, in discussing the practicalities and clearly communicating my accessibility needs as a severely traumatised and neurodivergent person, I soon found that they had no interest in accommodating me. I was met with a lack of understanding and flexibility, expressed in a way that made it clear how uncomfortable my requests made them. In the end, it culminated in a patronising “Maybe this isn’t the right thing for you”. To which I replied that it was strange how they wanted someone traumatised/neurodivergent/disabled to teach them about being exactly that, but then found that they were a little bit too traumatised/neurodivergent/disabled for their liking.
As strange of an anecdote as it might seem, this paradox of wanting to include people with lived experience without, well, wanting to include them, sadly is a common symptom of broader systemic sanism/ableism within our society. The current mental health system in the UK and other western countries is defined by medicalising and pathologising distress and variety. Meaning that trauma and neurodivergence are seen as “illnesses” and “disorders” that need to be “treated”, rather than natural adaptations to unbearable circumstances or inherent differences in perceiving, processing, and emoting.
This medicalised view of the human psyche gave us psychiatry. It is one of the puzzle pieces within the larger power constructs of patriarchy, white supremacy, and capitalism; just like the police or bureaucracy. The horrid history of criminalising “mad” people, locking them up, experimenting on them, or justifying their murder, is not a thing of the distant past, but still active in sectioning and surveillance. And marginalised groups, such as people of colour, women, or queer people, are disproportionately affected by sanist discrimination and violence.
“Treating” people usually involves drugs — most editors of The Diagnostic and Statistical Manual of Mental Illnesses have jobs in the pharmaceutical industry — and CBT, a modality that is favoured and sponsored by the state for its gaslighting and capitalist ideology. CBT acts on the basis that people are at fault for whatever they are struggling with, and emotions need to be controlled by thoughts, so that functionality and performance can be restored quickly.
Since this is the authorities’ view on mental health, it probably isn’t really surprising to find similar beliefs in charities. Most of them are built like companies anyway, complete with hierarchical structures, a focus on profit, and elitist employment attitudes. Furthermore, they have always attracted people who are in it for their ego and power, and not for the good cause. But even kind and well-meaning people aren’t immune to sanist attitudes. As with racism and sexism, these belief systems are soaked up from an early age by observation and experience, and thus are mostly subconscious. We nervously eye a person who mutters to themselves, we insult narcissistic politicians by calling them “mentally ill”, and we consume horror films that star a monstrous murderer with a “split personality”. Just like larger ableism, sanism is simply everywhere. And since the communities of people with mental health struggles, neurodivergent people, and in general people with “lived experience”, are incredibly varied, it also isn’t uncommon to find ignorance and prejudices within these groups.
On social media, I recently came across a statement by an autistic person in which they speculated on whether or not Elon Musk is indeed autistic, which he himself has confirmed. Instead, they speculated that he might have “Antisocial personality disorder”, a shockingly sanist version of trying to shove the black sheep out of one neurodivergent community, and over to the other. In a society which diagnoses grief and daydreaming as disorders, why not assholery as well!
This lack of solidarity with and blatant othering of (other) victims of sanism, brings us back to the first anecdote I shared and the charity who were only interested in my knowledge about trauma, preferably without the actual traumatised person. Whether they had mental health struggles themselves or not, they clearly couldn’t deal with my type of trauma and social anxiety. But that this should equate to discrimination, not only shows the pervasiveness of sanism, but also a disturbing lack of empathy and open-mindedness. Shouldn’t those qualities be at the base of a charity? Shouldn’t they be at the base of systems that claim to exist to help and educate people?
While the rising interest in lived experience is no doubt a positive development, it also brings an inevitable exploitation in the form of turning it into a product to be sold. Just like greenwashing, we now find that certain organisations find it profitable to invest in lived experience washing. However, what remains true is this: You can’t have lived experience without the consequences of the lived experience. As such, people like me, who have special needs that need to be met before they’re able to give a talk or take on another representative role, will easily recognise which organisations practise lived experience washing. But since that usually means not getting hired, it also gives us less of a platform to share this awareness. Making it all the more important that we aim to build solidarity within the movement, and create widely accessible opportunities. Because given the oppression of traumatised, disabled, and neurodivergent people, being hired as an expert by lived experience is a chance to raise awareness about the societal struggles we face and the intersections with other struggles. But in order to do so, we need to become aware of this oppression first.
And that’s exactly why I wrote this blog. As a way to raise awareness and encourage others to look at their own experiences of sanism, both that which they have been subjected to and internalised, because we all have that software installed in our heads. Beginning to unlearn sanism is an act of healing, and the healing of the world needs to start with us starting to heal ourselves.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.