Disability History Month - A Chat with Helen Barnes

As part of Disability History Month, we’ve been speaking with our colleagues about their personal experiences of living with a disability, both visible and invisible.

Helen Barnes has lived with rheumatoid arthritis since she was 7 years old, which is an autoimmune and inflammatory disease, meaning that her immune system attacks the healthy cells in her body by mistake and can cause painful swelling.

We spoke to her about her personal story, and about any tips she might have to help people get the conversation started about disabilities and the way they can affect a person day by day.

Hi Helen, thanks for chatting to us today. Can you tell us about how you joined Severn Trent and what your career has been so far?

I first started at Severn Trent over 20 years ago, working in data entry. Originally it was part time, but I enjoyed working at Severn Trent so much that I started looking to support other teams, and since then I have never looked back.

I have had quite a varied career but have always drifted back into Planning & Scheduling roles, and I currently work as a Process Analyst.

Can you tell us more about your personal story of living with a disability?

When I was 7 years old my mum noticed that my walking had started to become stiff, and my hands had started to swell. We went to our local GP who luckily identified the symptoms and referred me to the local hospital. It was there I was diagnosed with JRA (Juvenile Rheumatoid Arthritis).

At the time of diagnosis no one else in the family had any similar symptoms, but my mum has since been diagnosed with osteoarthritis and osteoporosis, both of which form part of the same genetic family.

I was only 7, so I didn’t fully understand the impact of what was happening and there was no counselling offered on how this would impact my life. I only really started to realise the impact when school discos came round and after spending hours on the dance floor, I wouldn’t be able to move the next day. So, it was at this point that life got tough.

I realised, bit by bit, that I would be limited on what I could do going forward, but I know I’m lucky in many ways that my mum has supported me every step of the way and been a rock for me to lean on. She has helped keep me going when I have wanted to give up and reminded me there is a solution to everything. As I get older, I move into new phases with this disease, so every day is essentially a learning day. My partner is learning along with me too and helps to keep me smiling on them days when I don’t want to come to work.

How do you feel that the view of disability and particularly the language around it has changed since you started at Severn Trent, and in the wider world?

For years I struggled with explaining to people why I didn’t turn up for events or social gatherings, and I assumed people should know without me having to explain! But I’ve been on a learning curve and realised that unless I take the time to explain then… well, yeah! People don’t know.

I think in general society is changing, though it’s all baby steps. A great example of this is that years ago, if I pulled my car into a disabled bay, I would be stared at by a lot of people who didn’t know that I had every right to use that space. Now, with more people being aware of hidden disabilities, this isn’t something I face as often.

In general, companies are better equipped for people with disabilities as well. There is so much more we can do but the times are changing, and if it means I’m making things better for other people like me to be able to come to work and really feel like part of a team, then I have taken a positive step.

What do you wish people would understand about your disability and how it can affect you at work?

Firstly, I wish people would understand that rheumatoid is different from arthritis. I still have this conversation now with varying ages of people. Rheumatoid arthritis is an autoimmune and inflammatory disease, which means that my immune system attacks the healthy cells in my body and causes inflammation which can make some days very difficult for me. If I get a cold, it’s bad news, most of the time I will need antibiotics to get over it.

Rheumatoid arthritis impacts me from the moment I wake up to the end of the day. I have good days where I’m up and dressed, ready and raring to go, and bad days where it’s a struggle to get out of bed at all.

I think one of the key things is also the language we use. It’s expected that we think about what is and isn’t appropriate to joke about, or with who, so before you make the joke when someone comes in late or can’t make the event, stop and think!

Language is constantly changing but further changes are required. We need to stop assuming, and instead start asking each other questions. Be aware that before someone has even walked out the door, they might have already gone through something difficult.

To find out more about Disability History Month, you can go to https://ukdhm.org/