Today, I am looking at disability and the impact on the family.
One of the poems that was submitted to the Disabled Pagans Voices Project gave me much to stop and think about. This beautiful poem looked at depression from the point-of-view of the loved one sharing a life with a person who developed severe depression. The writer was very open about their experience of depression and how it affected them as a couple and also for the writer as an individual. It affected them to the extent that the one’s depression sparked a downwards move in the other’s mental health.
The knock on effects of disability can be wide-ranging, affecting family and friends. I know this from first hand experience of my own disability and the adjustments needed to my life and that of those around me.
Yet the experience that came first to mind wasn’t my own disability but that of my husband who is sadly no longer with us. He had a major heart attack when our youngest child was just one year old. It affected his ability to work. He went on to develop kidney disease needing dialysis to keep him alive, and other health problems which affected day to day living.
Over the course of several years his health deteriorated and he became less able to do the things that we used to do. The children came to terms with their dad’s illness. They knew the man he was and accepted the changes. Holidays were less frequent, outings became difficult. He was still there for them and they had many happy memories.
And we went on to forge new memories, different but just as valid and heart-warming. The family enabled Brian to live as full a life as possible given his ill-health. He loved music, an avid fan of local band Sloopy and also our daughters’ band Francis Street. He went to pretty much every gig they did.
If you asked Brian, he would say he was not pagan, yet you would find him close by when we were ‘up to Pagan stuff’. We will always remember him circling the stones of Stonehenge on his mobility scooter.
Was there a downside? Of course. Our family changed from being dependent on Dad to him being dependent on us. It affected the family dynamics. It changed what we could do as a family, not because Brian demanded it but because the family did not want to leave him out. In later days it was sheer hard work providing the level of care he needed. We were on constant alert. It was at times stressful.
It changed what we would do as individuals. Brian’s care needs always formed part of our plans. I gave up studying for a master’s degree in Urban Regeneration due to his crippling anxiety in the early days after his heart attack, when he would be waiting on the doorstep for me to return home. Last night’s clothes never made into the washing basket till morning, in case we needed to get dressed quickly to head off to hospital.
Yet we gained a lot. Brian had time for people, genuine time to listen and be there for people. He told me that he was always ready to help people as best he could as other sick people had it worse than him – he had his family. We learned from him and became stronger. We learned how to cope in crisis. We learned to function as a unit. His disabilities bound the family together.
In my experience, a disability or ill-health does not, and should not, remain solely with the person with the disability. It is part of that person, part of their personality, and therefore to be embraced and accepted by the people around them as much as the colour of their hair. Yes, a disability can affect relationships but so do many other things such as a demanding job. And we adapt. Humans are good at that. And often the better for it.
Written by Portland Jones, PF Disabilities Liaison for the Midlands