‘There is possibility to find hope and meaning even in the depths of despair’

One moment that changed the course of your career
When my eldest son was born he was very ill and nearly died. Due to the lack of oxygen to his brain at the time he has cerebral palsy and many associated difficulties. This had a huge impact on me and the whole family and it took many years to come to terms with how different life could be from the one I had imagined.

Through my work with Hemihelp (a charity that supports families with a child or young person with hemiplegia – a form of cerebral palsy) I also saw other families struggling with the 'grieving' process required to come to terms with the situation you find yourself in as a parent of a disabled child; being slightly removed from the 'mainstream', fighting for services, and the emotional, and often physical, exhaustion.   

It was because of these experiences I set up www.affinityhub.uk to provide emotional support for parents of disabled children. It details organisations and private practitioners who have experience of supporting this client group as well as words of wisdom from other parents so people do not feel so isolated.  

One surprise from your research
I am researching the emotional impact on parents with a disabled child. Respondents reported that relationships and siblings are more negatively affected than the parent, nearly half of whom reported a positive impact on themselves. I think a lot of parents, over time, find an inner strength and acceptance following the initial shock of diagnosis or difficulties. It is post-traumatic growth in action.  

There were also a significant number of parents who said that looking back they would have done things very differently in the early days… hindsight is a wonderful thing.
 
One hero from psychology past or present
Not exactly a psychologist, but I love Sartre. His work on 'bad faith' or acting the part rather than being authentic resonated with me throughout my psychology and existential training as a counselling psychologist. I find the existential contribution to the meaning we can find in our lives a valuable core belief to hold on to when working with clients. There is hope and meaning to be found even in the depths of despair.

One thing you would change about how psychologists are perceived
Sometimes we seem to be viewed as having magical skills! I like to keep things pragmatic to help people understand what we do. Talking to someone can help. Having someone neutral who doesn't have an agenda can really support you to find your own way and provide time and space. These components sound so simple, but yet they're not. They're precious, under-appreciated and hard to find in everyday life.   

Furthermore, I think there is a basic need in humans to feel connected to others and at times, cared for. Often that is the point of therapeutic work; to have concern for your client. It's straightforward and challenging all at the same time. Existential philosophers have so much to teach us about our work, how to really connect with someone else, to see their humanity and bravely be open about our own.

One inspiration
The late Dr Alan Corbett, who was my supervisor at SurvivorsUK for two years. He embodied the formidable skill of being well versed in theory and research as well as maintaining an infinite capacity to empathise with an individual in distress. He was a beautiful combination of the abstract and the concrete.

One nugget of advice for aspiring psychologists
All experience is valuable. Get as much as you can in different settings, different client groups and with different practitioners. Even if you don't agree with an approach, your supervisor, or the way an organisation is run, it is all really valuable experience that feeds into developing your own 'style'.

One hobby
Wanderlust! I love to travel, seeing new places, people, customs and experiences. I saw the mountain gorillas in Rwanda this year, fulfilling a lifelong dream. The animals were incredible and the country a real surprise; managing to put the genocide of 23 years ago behind them in amazing acts of reparation. The Genocide Memorial was truly heartbreaking and moving: 'we can all make choices even in a difficult situation'.  

One book all psychologists should read
The Woman Destroyed – Simone de Beauvoir. The depiction of insidious messages we pick up without even realising; how a woman should behave, is illustrated with subtle thoughtfulness. It made me consider my own role as a woman, mother, wife and a human being.

One cultural recommendation
I absolutely loved the Björk Digital exhibition at Somerset House last year. Her constant pushing of the boundaries, creating, having fun, loving life to the full and ignoring others' potential disapproval is truly inspirational. And she makes me smile. As she sings on 'Human behaviour', 'There's definitely, definitely, definitely, no logic to human behaviour. There's no map And a compass Wouldn't help at all.'

One treasured possession
I love photos, and I keep photos of everything. I'm really terrible with dates and when things happened, so it helps me to place things in history… or maybe I've become terrible with dates because I've got so used to having photos to help me.

One proud moment
Establishing Affinityhub.uk and seeing the positive response from so many families and organisations has been extraordinary. The creative process from an idea to a reality has similarities to giving birth and it's wonderful when the response confirms one's belief that there was a need for it. The next part of my journey is working on becoming a social enterprise and applying for funding to provide low-cost counselling or a webchat support service to families.

One diversion
Outside in nature, ideally running.

One thing I want to do better
Connecting with other organisations. I have already made links with many organisations such as Scope and the Birth Trauma Association and it is so good to hear what other projects are going on. A significant difficulty is communicating the work, which brings me to the other area I want to develop: making better use of social media. The immediacy and range of social media is the perfect means for promoting your work.

One legacy
After a number of personal bereavements over the last year I've been thinking about the contribution we make in our lifetime. When my father died he had written at least 25 books, and seeing his name and words in print even after he is no longer here has had an enormous impact on me.   

Creating an organisation that carries on supporting families would feel like an incredible legacy to leave behind. I also plan to publish the research findings with the hope that this may provide relief to other parents and reassure them that they are not alone in their feelings and struggles. I have lots of ideas for Affinityhub.uk I just need to start making them concrete… As Hans Cohn said, 'Our guilt… is inevitable… for we always lag behind our possibilities.'

If you are a practitioner working with parents of a disabled child and would like to be included on the Affinityhub.uk website, e-mail Jo Griffin direct on [email protected]. You can follow on www.facebook.com/affinityhub.uk or www.twitter.com/affinityhub_uk