My experiences as a deafblind visual artist

Hi, I’m Kelly. I’m 49 years young (ahem) and I run my own small independent business in Derbyshire called 13 BENDS DESIGN. I’m very proud and often gobsmacked that my business is ten years old this year!

I work predominantly as a graphic designer, visual note artist and cartoonist. I am very lucky as I have lots of lovely clients and my work is very varied, it keeps me interested and challenged.

Image: Side portrait of Kelly Sheldon smiling in front of an easel of her work. Credit: Emma Croman https://www.emmacroman.com/.

At the age of 28 I was diagnosed with Retinitis Pigmentosa, and this was then altered roughly one year later to a diagnosis of Usher Syndrome. I had had mild hearing loss and was a hearing aid wearer from the age of seven – following my diagnosis, this dual sensory loss was explained as Type 2 Usher Syndrome.

I found this diagnosis a huge blow and spent quite a long time wrestling with depression and anxiety. I lost direction completely.

I found myself working in a small family company as a graphic designer and print production operative. After a few years my sight deteriorated, and I needed some support with the production element of my job. My employers knew of my condition when I was employed.

I mentioned to my employers that I would like support from the Access to Work scheme to help with elements of the job that I found difficult.

I think my employers felt threatened and they declined any contact with the Access to Work team. I was given some information from Sense about Usher Syndrome and its symptoms, which I passed on to my bosses in the hope they would read it and understand my condition better. But it remained on the desk, unread until the day I left. I’d been there almost seven years, but I left within a few weeks of this happening to me.

After a few days the dust settled and I finally realised how unfair the way my employers had treated me was, and this is when I decided to change my life.

I decided to set up on my own as a freelance illustrator and graphic designer. I knew if I didn’t do this quickly my fury would wane and I would run out of steam. So, at the age of 39, 13 BENDS DESIGN began.

Image: Kelly Sheldon kneeling on a wooden floor, creating art work at an event. Behind her is a large illustration titled ‘The Panel’ with faces and speech marks. There is also an easel, and a sketch pad.

Running my own business has been such a great experience. I get to set my own boundaries, I can be safe and I don’t have to do things that put me at risk. There is something powerful about creating your own narrative and taking some strength back for yourself. I truly felt useless and a burden on so many levels in my previous role. Setting my own targets and expectations has made me feel inspired again and my little business has gone from strength to strength.

I have realised I can give my new clients the service I wanted and not hold back with my personality. Who I am isn’t a bad thing, despite what I had been led to believe.

Now, I am trying to focus on my abilities and strengths, including learning some new skills and working on old ones.

One thing that has come from my diagnosis is a better understanding of other peoples’ struggles. I have always had a good level of empathy, but my sight loss has given me a better understanding around additional support, patience and not to assume that everyone is ‘doing ok’. Deafblindness is a wide spectrum, and we don’t all ‘look’ sensory impaired.

I am currently receiving long cane training with Sight Support Derbyshire. I only have one session left with my lovely trainer Michaela, who has been amazing and is very patient.

I haven’t had any emotional support during my sight loss journey, so initially I found it all quite emotional. I felt worn out and tired after the training sessions, then I would go straight to work afterwards, attend meetings and create work. It has been a hard process, but I think the independence I gain will make it all worthwhile.

As a visual note artist working at events and in communities, my job is to gather information. I listen carefully to people and visually record their valuable voices, stories, and dreams. My light-hearted cartoons break down barriers and ensure everyone is heard and has a voice.

I’m excited to see how much the long cane will help me get to venues in the future by myself.

Going through my diagnosis has helped me be a better listener. Also, I know not to presume that everyone is OK and to be kind.

I am passionate about working in live visual art for as long as my sight allows. I know that with this condition nothing is certain to last but none of us know what is around the corner anyway.

I am currently exploring how I can advocate for people with Usher Syndrome using my creativity. I don’t know what this looks like yet as this is a new avenue, but I’m excited to connect with more people from the Usher Community and believe that we are stronger together.

I wish someone had told me after my diagnosis not to be frightened and that things would be OK. Life isn’t over and it’s all about learning to adapt and trying to stay mentally strong to cope with the inevitable deterioration.

It’s important not to judge other people. Over the years I have felt that I wasn’t ‘blind enough’ or ‘deaf enough’ to complain or reach out for help. But the spectrum is wide and it’s important to just be kind and not judge.

I have put some coping strategies in place over the years, these include; yoga, swimming and I sing in a band. I am very lucky as I have two lovely children and a great husband. I want to keep showing them that I can thrive and I feel so grateful for the level of sight and hearing I currently have.