Eleanor September is a mother and carer to her daughter. In this upfront and personal guest blog, she shares the experiences that led her to participate in Ideas Alliance’s recent project on Closed Cultures, where we worked with the Care Quality Commission (CQC) and People’s Voice Media to gather stories of lived experience of rights violations and restrictive conditions in health and social care settings. As well as speaking of her long-term and ongoing struggle against closed cultures as a carer and parent, Eleanor also shares some thoughts about the CQC project and how the set-up of the story-gathering process helped her feel safeguarded and able to share her story.

I’m writing this blog because I wanted to enter my 65^th year of my life knowing I had at least acknowledged some part of my journey via unchartered territory. I feel I have traversed this far without comprehension or at the very least any signposting available to navigate the journey of becoming an instant ‘carer’. I only say that because it has felt like an uphill climb to the summit at every stage of my daughter’s life. She’s now almost 28 years old. On reflection, I can see that perhaps it shouldn’t have been this tough, if only the support mechanisms in place enabled those using them to individualise and tailor them specifically and appropriately (no blanket covering of everyone/every situation that arises regardless of how the situation presented itself at that precise moment!).

Let me begin from the day my daughter came into the world at 24 weeks. I do realise that wasn’t special in itself but I’ll briefly expand on this, because in my mind this was not what I envisaged becoming a mother entailed. Soon after her birth ‘we’ were parted. This is where I began to see the assumptions being made for me: the assumption that I understood ‘the system’ in place at the hospital well enough; the assumption that what was taking place was with my full consent; and the assumption that I clearly understood the non-verbal conversations and actions being taken. For example, on the ward I was put in a room full of mothers with their baby cots, including audible baby noises. This compounded the pain, confusion, and anxiety of not being allowed to visit my baby. It was obvious that no regard to my circumstances or my individual experience had been taken into account at any given point. No conversation was forthcoming and the feeling of being excluded was palpable to me, but obviously hadn’t fully presented itself to those in the positions of power/decision makers and those that blindly followed. Nobody had even thought that perhaps the inappropriate setting I was in mattered, or that I had certain spiritual needs that presented and were pressing for me to address. It all seemed remote and totally inaccessible.

After a few days, I requested a photo to be taken of my daughter in ICU and for an update which eventually happened. It was agreed that I’d be allowed to see her face-to-face, but only when the evening shift had started ‘as there would be less traffic in the ward’! I am a Spiritualist, and thinking of her demise, I wanted to enlist the help of my Spirit Healers to support her. I knew that would help me feel less helpless – and it was point blank denied. Fast-forwarding through the whole 18 months I spent in intensive care with her, it was impossible to overcome the closed culture feeling that existed. My full exposure to the world of social care and health systems presented ongoing battles of exclusion and closed cultures endemic in the existing systems, procedures and protocols followed at times, without recourse for those directly involved. The violation of our human rights left me feeling defeated and fearful of the future for my daughter.

This is why I was very happy to be chosen to recount my experience of ‘closed cultures’ and the effect thereof, which persists to this day. The fact that the CQC wanted to do this work was encouraging as it felt authentic, especially as they’d selected the ‘Story Gatherers’ to be those with lived experiences who we could readily identify with. Their approach presented without any of the underlying judgement one sometimes experiences because of not feeling safe telling our stories. Throughout mine and my daughter’s journey, the moments when we have told our story in the past have been paved with deep fear and intense judgements have been made, although not overtly expressed. Somehow, the results have always been expensive to our family (whether monetary or health-wise): for instance, when I had to go through an appeal process through the courts because I’d requested a move to another school 12 miles away with a similar provision. My daughter’s educational needs were not being met. She was being racially abused and experiencing increased isolation and, in the end she refused to attend school altogether. The Local Authority refused my application on the grounds that it wasn’t cost effective and that the other school offered the same provision. They didn’t make her welfare and wellbeing their primary concern even though reports from psychologists and others had highlighted a need for her mental health to be addressed, and her academic progress had stalled. This had an impact on me too: I questioned my capacity to keep on fighting for her human rights and to be her advocate in the face of my own life-limiting condition.

Because of these experiences, it is important to feel safe when sharing our story and to know that the settings involved take full responsibility and commit to safeguarding those who continue sharing in order to inform change. It was also crucial to me to know that the information gathered from the stories is valued, and will be used appropriately to better set up and support those who have a need to be working within or experience the closed culture barriers in existence.

“Every voice matters and nobody should be excluded from life experience, no matter how resilient they may be in the caring role.”

At the end of this project, I felt empowered and reassured that my contribution was valued and it allayed my fears of openly sharing again. The empowering experience I got from telling our story was invaluable, and hopefully this will be the beginning of our future journey without barriers and constraints due to cultural or racial exclusions. I hope that, with the knowledge from this project, we can better cultivate and build solid foundations needed to work together better for all people. First and foremost, allowing ‘the voices of lived experiences’ to guide and inform eradicates the need for assumptions to be made when support is required. The culture of ‘them’ versus ‘us’ is completely redundant, and does not help anyone who hopes to improve systems set up to wipe out closed cultures in the future.

Eleanor September is a mother, carer and advocate who took part in our recent Closed Cultures project working with the CQC and People’s Voice Media. This is the first in a short series of blogs exploring the important learnings from that project.

Photo by Sam Mgrdichian on Unsplash.