In the shoes of … Alison Cameron| Patient leader & active citizen. An inspiration… – Part 1

A short while ago I met an extraordinary person. Alison Cameron has had a big impact on my life and thinking. We are looking forward to running Whose Shoes? sessions together. This is indeed ‘Making It Real’.

I met Alison online – yes, Twitter again. I could tell she ‘told it like it was’ because she and Andy Bradley, whom I much admire, had got off on totally the wrong foot. It has been fascinating to watch this story unfold and for these two very interesting, passionate but totally different people to come together to the point that there is huge mutual respect. Wonderful that Alison today also publishes a blog in Andy’s powerful series on compassion. **

It didn’t take long before Alison and I were able to meet in person. We were looking forward to meeting up at the College of Medicine ‘Who Cares?’ conference in London.
We each found the other ‘exactly what it says on the tin’ and our rather quirky take on life immediately connected us.

Brilliant to meet you too @allyc375 and @anyadei. Both just as I thought. FAB #patientleaders!! Exciting times. @collegeofmed

— Gill Phillips (@WhoseShoes) June 11, 2013

But Alison has been through huge trauma – unimaginable to most of us. I have learned a lot about serious mental health issues. The vital role of suitable social care and housing support. The devastating effects when there is no joined-up thinking. Indeed the way ‘the system’ conspires to hold someone down. Yes, even someone as intelligent and innately feisty as Alison.

And, the long, slow, fragile route to recovery.

We have divided Alison’s story into two parts. Do not underestimate the courage it takes to tell a story such as this.

ALISON CAMERON – HALF LIFE  – Part 1

“I didn’t like feeling useless. My idea of who I was – the “me” that I valued – was someone who could be special for others, who could do something they needed. And here I was, a passive recipient of everyone else’s help”.    Professor Edgar Cahn: “No More Throwaway People. The Co-Production Imperative”

 

I ask myself how on earth did it happen? That someone like me could be rendered completely passive – a dead woman walking.  But then I note this in so many of us who have experienced life changing trauma and come out the other side fighting and made the long journey from victim, through survivor to leader of self then others. Is it luck or design?

I used to be the one MAKING the decisions about what was best for others. I ran international projects in the area in the Republic of Belarus most affected by fallout (both psychological as well as chemical) from the Chernobyl nuclear explosion in 1986. As a recent graduate in Russian with my first (and last!) post in internationaI relations, I was sent into the zone including evacuated areas in 1990. That started a life-long interest in the people of Belarus and in the power dynamics of humanitarian aid. As time went on, my thinking started to change. I could see that the way the “Victims of Chernobyl” were being portrayed was as such odds with the skilled, resourceful, passionate people whom I met along the way. “Children of Chernobyl” charities, albeit motivated in the main by genuine compassion, were I could see, contributing to an image of the people of the area as an object of pity. Those on the receiving end were sitting with skills that could be key but were not being utilised.

And much well intentioned effort was contributing to a dependency that could not be helpful in the long term.  The “Children of Chernobyl” efforts organising holidays overseas were a case in point. Corruption was rife in that world with people of influence bribing their way to having their children selected for so-called “recuperative” trips to the UK. Children were being showered with gifts by well meaning hosts and then returning to their community with the inevitable result of resentment and anger. And worst of all, these well meaning efforts were I could see contributing not only to crime, but to an overall culture of passivity. Now foreigners were arriving with cash so why not cede all responsibility to them for a price? It is not at all surprising to me that over 25 years on, international studies on the effects of Chernobyl now talk as much about psychological effects including the victim culture, as the scientific and medical.

So the way I worked started to change. I started to encourage the politicians to whom I reported to support projects in Belarus run by Belarusians with our efforts being to encourage capacity building and getting people out of victimhood towards self leadership. We started to concentrate on assisting some of new “self help” organisations such as the Association for Disabled Children in Homiel run by an inspirational mother of a woman with cerebral palsy. Nina was no victim, she was a survivor and natural leader.

However, my own “catastrophe” was to occur and I was to become a “victim” myself. While working on one of my European Commission funded projects in Belarus, my colleagues were horrifically killed. I was sent in to identify what was left of them and repatriate their remains to the UK. There were political ramifications to what happened and I was “strongly advised” to keep quiet or indeed be part of an alternative more palatable version of the truth. I could not handle this aspect and it was this that led my “breakdown” and subsequent diagnosis of Post Traumatic Stress Disorder. With PTSD “management of meaning” is essential so having to keep silent was ultimately what made me unable to cope. I identify strongly with the whistleblowers in the NHS and elsewhere. We become stuck between our devotion to our work and our commitment to the truth. This expectation that I would suspend integrity was far more corrosive than the sight of multiple bodies dredged from the River lying in a Belarusian mortuary. I had been told early on I would “never make it as a civil servant as I had an overdeveloped commitment to the truth”. How accurate that turned out to be.

I became so ill I could no longer function. I was trapped in a kind of something I describe as Half Life where the world as I knew it came to a halt, obscured by my own radioactive cloud.  First my health then my job went. With my career went my sense of self – described by Professor Cahn.  I commenced a downward slide into the quagmire – mental breakdown, self medication with alcohol, multiple hospital admissions, chaos, hopelessness and helplessness. I slipped under the radar from all forms help – homeless and devoid of an identity other than those given to me by the experts in terms of diagnostic labels, and by the public at large in terms of stereotypes and stigma. And almost most damaging of all was the self stigma in terms of loss of any belief in myself and in my future.

Alison’s powerful art in the Psychiatric Unit

Now I was on the receiving end of decisions made by the holders of the power. I found the experience of being a passive recipient of care dehumanising, disempowering and disenfranchising.  I felt patronised and invalid.  I was kept in the revolving door of the hospital by the lack of coherent approach to my health and social care priorities as I defined them rather than “needs” as defined by others – particularly suitable housing.

Somewhere in the midst of the mayhem, I managed by chance to make contact with others who were successfully managing their mental health/substance misuse issues and experienced the tiniest glimmer of hope from seeing people who had been where I had, living happy fulfilled, active, contributing lives. I started to claw my way back to life with the help of my peers.  I started to take the power back that I had all but lost. I started to become a participant in my own recovery.  I started to fight against passivity.

To be continued on Thursday…

**Andy Bradley, of Frameworks 4 Change, is currently hosting a powerful blog series, with wonderful contributions from leaders in the field of compassion. Alison Cameron’s experiences make her the biggest expert of all – an expert by experience. Here is her powerful contribution to Andy’s Safe Care – The Fierce Urgency of Now 5 Compassion, Humanity and Equality, published today. We have coincided publication for maximum impact of Alison’s  heart-rending story and I would strongly recommend that you read the whole set of blogposts.