In this rich and deeply personal series, CDA Trustee and new community reporter Priscilla Eyles tells us how a society geared towards the needs of non-Disabled, non-minority people has let them down, partly by failing to recognise, understand or adapt to their attention-deficit, hyperactivity and autism conditions, a situation that caused her to struggle with relationships, jobs and service providers (including therapists) and even propelled her into the clutches of a cult.
Chapter 1 – The role of trauma
Racialised trauma
My first encounter with racism took place on my ‘birth day.’
My mother’s maternity nurse training had alerted her early on to signs I was going to be a breech baby and to the risks associated with that for me if I was to be delivered vaginally.
But when she told the head obstetrician this and insisted they book in a caesarean section to mitigate those risks, he dismissed her, saying that because she was ‘African and shaped like a barrel’ she would be able to push me out ‘without a problem’.
A little history lesson at this point. This dismissive attitude to the welfare of my mother and I, two racialised people, is a form of racism with deep roots.
In the days of Trans-Atlantic slave trading, 19th century plantation and slave owners, seeking justifications for the violent treatment of their Black captives, would promote racist research claiming Africans had a naturally higher tolerance to pain and less vulnerability to injuries.
Such discriminatory beliefs about Black people sadly continue to negatively affect the medical and maternal care they receive today.
Because of this historically embedded racist logic then, my mother was ignored, no caesarean was planned and I nearly died from umbilical strangulation. It’s only because my mother understood the dangers and shouted at attending maternity staff, demanding they perform an emergency caesarean, that I survived.
However, I’d been deprived of oxygen at a vital stage in my entry to the world and had to spend a week isolated in an Intensive Care Unit (ICU), unable to immediately bond with my mother.
That first skin-to-skin contact between the newborn and the mother is said to be vital for establishing a secure attachment, bonding and, ultimately, developmental health.
So, this episode was very possibly a key foundation to me developing an anxious-ambivalent attachment style, leaving me with a sense of helplessness, fear and abandonment when alone for longer periods. This still affects me now even though I now have a much more secure attachment style.
I also believe this experience played a significant role in me developing autism and Attention Deficit Hyperactivity Disorder (ADHD), and to this day, having a painful sensitivity to any pressure around my throat.
Despite the massive impact of racialised/intergenerational trauma on mental health and brain development, the medical profession still largely fails to acknowledge how centuries of white supremacist attitudes impact those from marginalised communities, instead attributing any atypical psychiatric profiles to ‘abnormal’ brain functioning, another concept with historically elitist and colonialist roots.
Racist attitudes can be further seen in the overrepresentation in psychiatric wards of Black people, too often erroneously and reactively termed ‘dangerously psychotic’ or ‘violent’, as well as in the underdiagnosis of neurodivergent conditions like autism and ADHD among racialised people like me.
In my experience, medical practitioners willing or able to initiate or encourage conversations about racism are rare, and in the NHS are limited by the oversubscribed, pressurised, one-size-fits-all bureaucratic system they find themselves in.
I still remember how excited and validated one of my sadly now passed friends, Nila, was when, years ago, they found a GP who understood and could openly acknowledge that their fibromyalgia may well have been the result of racialised and intersecting traumas they experienced as a South Asian non-binary, queer Assigned Female at Birth (AFAB) person.
With so many different locums and rushed 10-minute appointments, it is hard to develop a trusting relationship with one person that enables space and time for the exploration of these sensitive issues.
I myself have never felt comfortable broaching racism with my NHS psychiatrist, despite being a vocally anti-racist and intersectional neurodivergent activist almost everywhere-else.
I end up thinking things like: If I did say something, would it be taken seriously? Or would I just be dismissed as another oversensitive ‘angry Black woman’ and paranoid fantasist playing the ‘race card’? Would I only end up being gaslit and further re-traumatised. The conclusion usually is it’s just safer to say nothing.
Failure to acknowledge the impact of racism and marginalisation can lead to what psychologist Guilaine Kinouani calls a feeling of ‘epistemic homelessness’.
This idea describes how racialised people can feel disconnected from our internal guidance systems (in other words our gut instincts), due to the frequent undermining and silencing of our experiences (at its extreme it’s said this can lead to dissociation and psychosis).
I know this painful feeling too well and how it translates into long periods of self-doubt and circular rumination about the accuracy of my perceptions of discrimination.
Intergenerational trauma
My mother grew up in colonised Rhodesia (now Zimbabwe), her formative years shaped by her experiences of being a ‘second-class citizen’. She recalls being spat on by white Rhodesians and called a ‘kaffir’, a common racial slur.
I strongly believe she must’ve also experienced some attachment trauma, having been separated from her parents as a baby and left with her grandmother, her parents too busy working and providing for her and her two brothers to have capacity to care for her.
She then had to escape Robert Mugabe’s guerrilla army in her 20s, after receiving information from family members, that Mugabe’s troops, who belonged to the majority Shona tribe, were planning to target the Ndebele people and by seducing and impregnating Ndebele women like her to compromise their tribe’s unity (this ethnic cleansing campaign against the Ndebele people eventually gave rise to the Gukurahundi genocide of 1983-87, killing 20,000 people).
This all, I believe, contributed to my mother being unable to tolerate my anxious states and depressive lows when growing up and wanting me to remain ‘positive’.
Being positive was far from my mind, however, as I struggled to deal with what I later realised were my neurodivergent challenges, as well as the daily microaggressions and oppressive power dynamics of being multiply-marginalised.
As Kinouani highlights, immigrants escaping persecution can lack the ‘emotional capacity to cope with additional trauma’, and so will often try to diminish or deny mental health issues that are a result of daily discrimination or resulting minority stress as it has also been called.
Furthermore, my dad, who is white British and diagnosed dyslexic (and most probably also has autism and ADHD according to himself, other family members and my observations) also had a traumatic childhood.
He grew up with a single mum in difficult circumstances, and at a time – the 50s and 60s -when neurodivergence was not recognised as a condition and its symptoms were seen by schools as a sign of stupidity and/or rebelliousness that needed to be corrected. This resulted in traumatising corporeal punishments for him such as regular canings.
With both my parents having to deal with the pain of their own distressing upbringings, they lacked the understanding to get me the right help.
This would have been difficult to get anyway and near impossible when I was growing up in the late 80s and early 90s, where there was little commonplace understanding of neurodivergence. Even when I was coming into adulthood in the 2000s, ADHD was only just being recognised as an adult condition by NICE in 2008.
From my childhood to my twenties, then, I missed out on any professional interventions that could’ve stopped me from being so lost and self-critical. I was always ruminating on what the hell was ‘wrong’ with me as I kept repeating supposedly ‘basic’ mistakes and getting easily overwhelmed by everyday responsibilities. I was left to conclude that I must be fundamentally flawed – a perpetual liability.
Consequently, I felt doomed to ‘fail’, my teenage diaries dark holes of despair and full of the most vitriolic self-directed abuse. I didn’t realise I was let down by the safety nets, systems and people around me that were meant to help me.
