Personal Disability Stories – living with change: David’s story

By David | GOV.UK, June 3, 2020

Picture of David.

Change is something most people fear. The uncertainty of what’s ahead, and not knowing if you can cope with it can be a real barrier. It doesn’t have to be that way.

I have a visual impairment called macular dystrophy. Most people will know it as macular degeneration. My condition is one of four genetic versions, which means that I was born with it but it doesn’t manifest until puberty. For me this was at the age of 10. Dealing with a raft of physical changes and a loss of sight was a big ask. Macular dystrophy initially affects your central vision, with a blur in the center of your view. In most cases this grows, blocking out more and more of your vision until you have no usable vision.

I realize this is where I learnt my first lesson about change:

  1. Talk to someone and find support. I have to thank my parents for the support they gave me at that time. Their approach was that we would get through it together. They didn’t want my reduced sight to stop me doing what I loved, so I still played rugby, attended army cadets and did all the things a 10-year old wanted to do. My vision has deteriorated four times since I was 10. Each time I’ve had to learn how my disability affects me, and I’ve learnt more about my disability and a lot about myself. Over those changes in my vision I learnt my second lesson…
  1. Learn as much about yourself as possible. We all process our emotions and deal with physical change differently. By spending time exploring your emotions, being mindful of what you’re feeling and learning how you process emotions, you can find your own path to accepting your new situation. In my education and career, my disability has meant sometimes I’ve not had control over my choices. I started at university doing a chemistry degree. During my first year, I lost more vision, which led to the university considering this a health & safety issue. So I changed degrees. I had a career in IT when another deterioration happened. Accessibility solutions were nowhere near as good as they are today, so I was made medically redundant and I used that money to do a second degree. These events helped form my last lesson about change…
  1. Make it yours. A change, for whatever reason, is an opportunity to make choices and have some control over what happens to you. Following a change in my circumstances, I joined the Civil Service (Department for Work & Pensions). I previously worked for an employer who wouldn’t let me have a carer’s break to look after my parents. So I resigned, looked after my parents while we put care in place, and then had to look for a new job. I knew I wanted to help people, so I applied to be an AO in a local Jobcentre. That was 11 years ago. Since then I’ve progressed from AO to SEO and now work in the Department for Education on a team that handles cases where councils are rated as Inadequate by Ofsted for their Children’s Services. Our role is to help turn them around, and I work with council leaders, chief executives, ministers and SCS. I am now registered with a Severe Sensory Impairment – registered blind, in old money. I can navigate around during daylight, but my night vision is severely limited and on poorly lit streets I have to use a guide cane. In work I use magnification software, and to help me read large documents quickly I use screen reader software.

I wrote this blog before the COVID-19 situation arose. iIt feels more relevant now than ever, and these steps are helping me right now. My daily work routine is very different – I work from home, I have lots more meetings with stakeholders, and there is lots of information that I need to know about. By staying in contact with colleagues, remotely, I’ve been able to keep on top of things.  By committing time in my diary I am keeping up to date with alerts and bulletins that contain vital information for my stakeholders, and by taking time to unwind my mind isn’t cluttered, meaning I’m not stressed.

Inside and outside of work, by finding support, being mindful of who you are and introducing your choices when change happens, I really do believe change is something we don’t have to fear.

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