New Year new Perspective
Sitting here and pondering at 57 as I look back over 2024, I realise I am now just 10 years away from what will be my retirement age 67. Whilst I certainly have views on whether that age is relevant for people such as myself. Having done lots of hard manual work and knowing how my body feels, since my diagnosis of CKD and 30 years of strong medication. Reflecting, it’s more about acknowledging that I feel in a different place now as I have been in previous years. I know I can’t physically do what I used to be able to do, which has been tough to accept. But I know I also have skills I have not used in recent years, around public speaking and advocacy. But shutting myself away dealing with my mental health, has definitely helped me. I kind of figure, if we are going to see changes in society, its up to us to speak up more. Sharing our experiences, using the many different platforms around now. Many with chronic conditions, are doing the same on TikTok lives, sharing their experiences, which can only be a good thing. The same as I have done with informal peer support, with kidney failure and my mental health. People are finding a way together, that can only be a good thing.
Lived Experience
Looking back, I know what I have been through, in my personal life, as well as my physical and mental health. It makes sense for me to go back to speaking about this more often, so I can help others. Earlier in 2024 I gave a speech to fellow kidney patients, mostly at pre transplant stage on dialysis. I realised that they were very interested in what I am saying. What I had realised, is that in dealing with my mental health in recent years. I had forgotten that one of my skills in life, is speaking. Whether it has been through my impressions, post production stuff for TV, or radio. My voice is still a big part of my life, as I chuckle to myself thinking its the one thing that still works. Regaining my sense of humour again and my voice as well I guess. I feel empowered now more than at any other time in my life, as I head towards 60. For me, as I now acknowledge that the adversity I have faced, it has given me an incredible resilience. It has helped me to become a strong independent patient, as well as an individual. Our lived experience, what we face with our mental health, is an education itself and that education, comes in many forms.
Politics and how it affects us
Of course, politicians and elected officials quite rightly, will often speak on our behalf. But in a wider society, is it right that the working-class voice is often suppressed? Those that face poverty, homelessness and social issues, often used for a story around Christmas. The working class, those with disabilities and many others, should be part of the political debate. Yet we are rarely seen on political shows, on radio shows and so on. Simply used for when it suits the narrative, or for a TV documentary, pushing the tired old stereotypes. For me it’s not about any form of self-promotion or money, it’s about a different perspective, about balance. So many in society, read about people like me in the module of a degree, yet rarely work with or meet us. Yet, we are always kept at arm’s length, just used for a feel-good story. Others looking to speak on our behalf, as the country drowns in charity, instead of fixing societies problems. Don’t get me wrong, I have a great deal of respect for research charities and the important work they do. But I feel from what I have seen over the years, charity on a national level, is being used by politicians to hide behind. Whether it’s homelessness, poverty, those of us with disabilities. You have to ask the question on homelessness and poverty as an example, what has changed? constantly speaking through charity.
Addressing the imbalance
As we head into another New Year, in my view, the balance must change. Never have I seen the working class so upset at government or opposition parties before. I know there are many good MPs across parliament. I saw some of that myself, before the Organ Donation Bill was passed. The work others are doing around disability, concerned perhaps as we are, about the messaging and targeting of those with disabilities. But have some MPs become out of touch? Are they so fixated on the next headline or public relations? Have they forgotten that we just want to live a decent life, without government looking to reinvent the wheel? We just want dignity when off work, not have to beg for help. Work has helped me over the years, no question. But 30 years of work and medication, have taken its toll. Do the decision makers and those looking to make cuts, fully understand the messaging they are putting out? As 10 of Billions is being paid out to buy to let landlords, in housing support, first acknowledged under Johnson. It seems the disabled community are being targeted for cuts. The awful documentaries and the same old lame stereotypes. Yet they ignore the reality, that most of the money being claimed in benefit, will be going to the private landlord, not the claimant.
I wish you and your family a happy New year and let’s hope we do see change in 2025 Keep well – Stuart