by Chrissy Bonham
I recently accompanied Brendan Stone from the University of Sheffield to lead a storytelling session for people with learning disabilities. This was organised by Lucy Series from Cardiff University who is researching the Mental Capacity Act (MCA) and wanted to help people tell their stories about decision making. I didn’t know anything about the MCA and I hadn’t worked much with people with learning disabilities so I wasn’t really sure what kind of stories I might hear. The stories I did hear have deeply affected me and made me aware of a world I knew little about, this is why I wish to share a few words on what it was like for me to take part in these storytelling sessions.
I work in mental health and facilitate workshops where I often hear very difficult stories and as a facilitator I’ve developed ways in which I am able to deal with this. My role is to keep a session running and help people tell their stories, in order to do this I often have to compartmentalise my own feelings and deal with them when I get home. I quickly found that in our Love and Strength storytelling session this was becoming very difficult for me to do. At several points I felt my heart race and my body grow warm as I was flooded with emotion and wanted to cry. I have since spent some time thinking about why this was.
Essentially, the stories I was hearing about decision making were beyond the realms of comprehension for me. No matter how far I tried to stretch my imagination I simply could not accept that any human being could be treated in the manner I was hearing about. Listening to people speaking so matter-of-factly about decisions they, at times, had been forced to make deeply pricked whatever it is that makes me human. To me, some of these decisions seemed to be an infringement of every human right I could think of.
As I write this I am eating a piece of toast, a small privilege I have hitherto taken for granted. Now I sit and ask myself how I would feel if I was no longer allowed to make a slice of toast? What would I feel like if the act of placing bread in a toaster was removed from me? How would I react if somebody else said it was in my best interest for them to do it for me, ignoring my assertion that I was capable of doing it for myself? I really do not know the answer to any of these questions as I find it inconceivable that this could ever happen to me, however, simple everyday decisions like this are regularly being removed from people with learning disabilities in their best interest.
I suppose the only point of reference I have is how I’ve felt when decisions have been made about me at the times I’ve been mentally ill. The decision to not allow me to leave a hospital ward, decisions about my medication, the decision I was not mentally well enough to hold a driving licence. Things that left me significantly distressed, my protests ignored and my life dictated by a bureaucracy where it seemed once a decision had been made about me I was stuck with it. In hindsight I try to understand that these decisions were made in an attempt to keep me safe, however that understanding will never erase how I felt at the time.
I try to take this feeling and apply it to how I would feel if somebody decided to tell me who I could have a relationship with, who I could have sex with, where I could live, what times I could go out and where I could go, whether or not I could look after my own children, what I could have for my tea, whether I could take a shower or brush my own hair. As much as try I still cannot really imagine what that would like feel like and I certainly can’t find any evidence that these kind of decisions would be removed from me in order to keep me safe.
These were the types of decisions people told stories about, decisions they felt they had a right to make but had been deemed to lack the capacity to make them. I have read the five principles underpinning the MCA and assumption of capacity, protecting people’s right to choose and ensuring any decisions made on behalf of someone are in their best interest lie at its heart. When people are feeling institutionalised and cheated of their human rights something is clearly not translating into practice from a law that is designed to protect and empower people. This is why it so important for these stories to be heard by the people who make decisions regarding this law.
I still don’t know much about the Mental Capacity Act and perhaps I never will, but the stories I have heard from people directly affected by this law will remain with me forever. Witnessing the strength and courage of people having to fight to live their own life in the way they wish is not something that could ever leave you. I think the main thing I am truly marked by is the immense ability of the people I worked with to show love, compassion and hope in the face of events such as I have outlined above. I hope that I would be able to demonstrate these qualities if I ever found myself in such a position, but I do think perhaps my gentleness would be tempered by injustice. To me, holding onto one’s humanity in life circumstances like these is a truly superhuman feat and I feel so privileged and humbled to have met extraordinary people who are doing this every day.