The Wholehearted Carer

I am standing on this soap box because: This week Birmingham University published this report: More than 40% of parents with disabled children have thought about suicide – study – University of Birmingham

Why this is soap box worthy: Contrary to the posts I saw on X where well meaning supporters commented that people would be shocked by this statistic. I was not shocked. I clearly remember being in my early 20’s and a single parent of a child who couldn’t play due to her challenging behaviours around other kids. Let’s just say that when speech isn’t a viable option to get folk out your way, teeth can suffice! We were becoming increasingly socially isolated when I was offered what I thought was a lifeline in the shape of ‘Play Therapy’ via a local Centre ran by the Diocese and Local Authority. I went on a gloriously sunny day and the Play Therapist Nun duly came and took B to ‘play’ with other children. I sat on a bench and waited, bathed in sun streaming in a stained glass window of Our lady or Jesus or some hopeful Biblical representation of the saving power of God. Twenty minutes into the hour session B was brought back to me with the immortal words ‘I’m sorry I can’t work with your daughter, she isn’t able to play with other children’. I said ‘Yes, that’s why she’s here’ to which she smiled and said ‘I’m sorry we can’t offer you anything’. And I took B and fled in tears to our car and got us in and revved us off and I thought ‘If I crash this car into that barrier ahead at speed, could I kill us both?’. Fortunately, I decided in a split second that I couldn’t guarantee that and I couldn’t live with the consequences of one of us surviving and I slowed. I still bumped into the barrier. I still scraped my car, but the scrape felt like a release and I’ve never ever forgotten that moment. I’ve also hardly ever told anyone, until now. It has been so taboo to talk about how low we can sink. How utterly exhausting and isolating and hopeless it can feel.

In 2021 I read a paper Judith M Brown had written many years before on recurrent grief: (PDF) Recurrent grief in mothering a child with an intellectual disability to adulthood: grieving is the healing | Judith M Brown PhD – Academia.edu

I googled her, found her e-mail and wrote to thank her for the paper I felt validated. The cycle of grief was something I recognised. Many months later she responded to me with this:

‘I am so touched that my words were helpful to you. That time of research and writing was so special, and special too that the paper was printed in the UK (my mother comes from there). I submitted the paper to an Australian journal but it was knocked back. One of the assessors was very negative about the research opening to the idea of mother’s grief in terms of having a child with a disability.’

I had asked in my e-mail where the work had gone next and she confessed to me that due to reactions like the one above it hadn’t gone anywhere, but she was so encouraged to find it felt authentic to my lived experience.

When I read the report by Birmingham University it didn’t shock me, it validated my lived experience and the lived experiences I have witnessed in friends and parents I have met on this journey.

For everyone who has watched and loved ‘Inside Out’ you will be aware that validating lived experience isn’t about sharing in the joy, it’s about sharing in all the emotions. The basis of this blog is to share in all the emotions.

This report is heart breaking, but we shy away from heart break at our peril.

It reminds me of this:

“There is a crack in everything. That’s how the light gets in.” ― Leonard Cohen, Selected Poems, 1956-1968

Can I change anything ? This blog is about changing the culture where unpaid carers merely survive rather than thrive. This blog is about validating lived experience and owning all our emotions.

Do I have the energy to fight this? Yes, I have the tools of this blog to help me even when I don’t have the fight or capacity.

Did I have to pay for this privilege? No.

Conclusion: This is a painful finding but I hope in it’s sharing, society validates our lived experience and finds way to ease the pain so the light shines through the cracks.