Sue Harris

I was born in Sowerby Bridge, West Yorks. When I was thirty I gave birth to our daughter, Johanna.  After leaving hospital at seven days old, she became unwell.  This was the start of our long journey.  There was never a true diagnosis for Johanna, her condition was an extremely rare and very complex medical condition, often referred to by her Professor as ‘Jo’s disease’.

She was referred to Great Ormond Street. This was to be a place we spent much of Jo’s life.  She was a sparkie, outgoing, live wire, with a wicked sense of humour, who tested most people she met.  She seemed to have this way of touching people lives, but if she didn’t like you, she was a nightmare!  She attended a local junior school, with the help of a full time class room assistant.  Despite all her difficulties, she did really well and enriched her class mates with a gift of understanding and caring for other people’s needs.  When she was eleven and due to go to high school,she became very ill and we spent most of the next two years in hospital.  Jo never returned to school because of her medical complications and it was decided that home education was going to be a safer.

When she was seventeen, she announced she wanted more independence.  I decided I needed to get more information on how to let her grow up and move on.  Completely by chance I was offered a place on Sharing the Challenge, a course run by Partners In Policymaking, this was a huge turning point for us both and whilst doing the course we began to change our whole life around.

Becoming a Partner was the most amazing experience, it gave us the opportunity to see our daughter as a gift and as a family we started to plan for her future.  We learned to LISTEN, a skill I felt I’d lost, with the pressures and battles that I’d fought over the years.  Jo unexpectedly died shortly after I’d finished my course but she passed away with a wonderful vision of what her future could have been.  I was so grateful to have been able to have shared the vision of her inclusive, normal life.

I found I still felt so passionately about how Partners changed our lives I felt I needed to go on and try to do the same for other families.  I went on to do the Partner in Policymaking National Graduate course in Loughborough.

I now work as a co-ordinator for Partners, as well as working alongside Local Authorities in changing people’s perceptions to disability and promoting inclusion. I work with the YHIP with the Regional transition programme,
In-Control, Yorkshire and Humber.

I am looking forward to working with Bury Parent Partnership, as a Parent Participation Worker and I’m hoping my experience will be a great asset to the team.

Contact: sueharris@togethertrust.org