I’ve previously blogged briefly about my own traumatic experiences as a hospital in-patient as an 11 year old following diagnosis of M.E. It was the early 90s then and I only received an ME diagnosis because my parents read an article in the local newspaper about a footballer who had developed ME and then, supported by our wonderful, rural family GP, took me privately to see a specialist 40 miles away. Some months later and following a decline in my health I found myself admitted to a children’s ward. A psychiatrist had me lifting medicine balls and pedalling hard on an exercise bike. I’d been there a week but my parents decided enough was enough, that this treatment was damaging me and so signed a discharge form and walked me out of there. The psychiatrist wrote later in notes (which my mum demanded to see) that I was a ‘school refuser’. He never spoke to my school to gain feedback about how much I enjoyed school and engaged in my learning. A term previous to becoming ill I’d been to France on a school trip and raced my friends up the Eiffel tower.
I count myself fortunate that a social worker never came knocking. Many others found themselves amidst child protection procedures and parents accused of fabricated illness (previously known as munchausen’s by proxy). Some still do.
While my seven year stretch of adolescent ME didn’t become severe like Jessica’s (although I did miss five years of school), I knew that reading Jessica’s book would drag up some distant memories. I’d wanted to read it, I just wasn’t sure I was ready.
A girl Behind Dark Glasses creatively tells the story of Jessica Taylor-Bearman’s life between the ages of 14 and 19, whereby her severe M.E. invaded every part of her existence and hauled her to three hospitals for long term stays as she was too ill to live at home. The journey through those years feels excruciating as Jessica narrates one medical emergency after another as her body progressively shut down on her. Use of diary entries narrated to her mum and on her electronic Dictaphone add colour to the memoir but it’s Jessica’s skillful weaving of her own story which made this such a page turner of a book. I felt like I was on the hospital wards, as a witness, intruding on some incredibly personal moments. However, Jessica asserts that her story must be told and she gives us permission to see her at her most vulnerable. She declares from the pages that we must see her, we must hear her story.
I read this book over two days and I’m still processing it. It was an unusual experience for me, as there was much I could identify with in Jessica’s book. I’m 10 years older than the author, but looking back, I also had the same irrepressible hope that I would recover, or at least that one day things would be different. Things would be better. Maybe it was the ideal of youth. Jessica writes that she wanted to scream at professionals that she wasn’t depressed. I also felt that I had to persuade every doctor, tutor and education psychologist I came across that I wasn’t depressed. Yes, I got ‘down’ some days, but never depressed. See me. Hear me.
So I come to the second lens through which I read Jessica’s book: that of being a social worker with 11 years of experience behind me. While I ached in solidarity as a fellow ME body, it was my social worker self who was on the verge of tears, my social worker self who was silently shouting ‘No, No, No!’ at the book. A Girl Behind Dark Glasses is about Jessica’s journey but it’s also ultimately telling a meta narrative about the dire need for person centred care and compassion in our health and social care services. While I was sitting in university lectures and learning about evidence based practice, social models of disability and holistic solution focussed intervention in 2006, Jessica was being subjected to some of the most inhumane treatment possible. The author tells of her experiences in a slightly off-kilter comic way via the creative names ascribed to her captors, sorry, carers. Some of the various workers on the ward remind me of characters from one of my daughter’s favourite books ‘The midnight gang’ by David Walliams, where a young group of hospital in-patients get up to a lot of mischief during the night by evading their lazy and sadistic nurse. Except, Jessica’s experiences were all too real and she paints a picture of staff who were ego driven, just did not care, or sought to actively harm her. Jessica was blamed for her own lack of progress. As I read, I had to remind myself that what I was reading happened in the mid naughties, not the seventies or eighties. The contrast between the staff and atmosphere of the second, abusive, hospital and the third, caring hospital couldn’t have been starker. With my social work hat on I couldn’t help but note some of the important themes for professionals to consider when caring for vulnerable and severely ill and non-verbal young people:
- How do we work to establish competency of young people, to enable them to make decisions for themselves when they have difficulty communicating? (Are they Frazer competent?)
- How hard are we trying to genuinely communicate with young people who cannot do so through usual means? How can we be creative in establishing a young person’s needs, wishes and feelings?
- How do we demonstrate true person centred care which places the young person as the co-author of their care plan?
- How do we challenge established cultures of respect and hierarchy whereby it is presumed that doctors always know best, when really there needs to be genuine partnership approach to care and openness to challenge.
- Can we admit that sometimes we don’t know, taking a holistic and cautious approach to care rather than a plan of action which could cause harm?
- How can we convey difficult news clearly to young people and ensure they understand the information?
- Are we willing to take the time to notice very subtle changes in a non-verbal young person which may indicate they are subject to abuse?
- Are parents and siblings utilised as part of the circle around the child or young person to meet their emotional needs? If not, why not? Are the reasons documented?
- Are we demonstrating compassion, unconditional positive regard and ensuring that we’re doing everything possible to avoid de-humanising a young person?
Really, this stuff isn’t complicated. While cultural norms
of apathy and institutionalisation of staff within caring frameworks can become
entrenched, it doesn’t mean that change cannot and shouldn’t be a priority.
Jessica has every right to be angry about her experiences, yet throughout the
book she draws the focus away from the terrible thing that she’s just shared,
to the possibility of a brighter future. The word that consistently came to
mind whilst I read this unique book was ‘fortitude’. It’s a really old
fashioned-sounding word which was a criteria by which I used to have to review
foster carer’s progress. Did they demonstrate fortitude? That is, ‘courage in
pain or adversity’. Jessica showed with humility and warmth that she has
fortitude by the bucket load.
This book may make painful reading for some who are still working through memories of childhood trauma, however I believe it is essential reading for every professional who works with the most vulnerable children and young people in society. Hopefully it will be an important part of a process of personal reflection for many and a further tool for challenging ableism. There is still a long way to go.
[A few months ago my Dad and I were on the way to an event and we drove past the site where I’d been in hospital when I was 11. I hadn’t been up that road for a decade or more. Most of the hospital has been knocked down and the rest appeared to be being used as office space. I felt strangely satisfied about this. These symbolic moments are sometimes helpful for us in putting the past to bed. Have you had similar moments which have helped you to move on from difficult childhood experiences? Feel free to share in the comments]