Tiffany lives in Bournemouth and starts her day at 5.30 am everyday when she gets up and makes her way to her local pool for a swim.
Last year she abseiled down the Spinnaker Tower in Portsmouth for charity, despite having two muscle-wasting diseases which the medics said would stop her walking past 20 years old.
Now at almost fifty, she swims and trains every day and is still able to be upright – walking with a stick and only very occasionally using crutches or a wheelchair. These achievements she attributes to a positive mindset and staying active throughout her life.
“I’ve always been a really positive person – you have to be really, don’t you?”
She likes contributing to her community – volunteering both as a peer support mentor for Muscular Dystrophy UK and at the local hospice every week. A sociable person, she enjoys being out and goes on regular cinema trips with her husband.
Unsurprisingly, living through the COVID19 pandemic and having to shield for a long time had a big effect.
“The pandemic was horrendous. It worsened my disability by around 30% - doing damage that I can’t get rid of now. Because of my muscle wasting diseases, exercise is really important – I need to always be using and building on my muscles or they will waste super quickly. When I couldn’t go out and do this it had a huge impact. Without any weight-bearing exercise it even worsened my metal ankle replacements in my foot.”
Tiffany has been part of the RiDC Consumer Panel for two years and taken part in research on train accessibility, heating controls and TV streaming services among others. She feels that things are getting worse for disabled people, but also better and the panel provides a direct path to getting her voice heard.
“Sometimes when I walk into a building or use a service I think ‘an abled-bodied person must have designed this - because it really doesn’t work for someone with a disability like mine. Even the Olympic stadium for the 2012 Olympics in London – the disabled seating we tried to access was twenty steps up!”
“The RiDC panel enables us to point things out in a productive way so that a non-disabled person might come back and say ‘Gosh I didn’t even think of that!
“We want to do things, and we can do, but we need to do it in our own way. For example, in my abseil last year, I did it in a different way to the able-bodied person taking part alongside me but I was happy doing it in my own way. It was brilliant.”
She says that although there is still a lot to improve on, there is also a lot happening that is really positive and inclusive and is keen to recognise this and feed it back to people also.
“During the pandemic there was only one supermarket I could get shopping from – despite being on the ‘vulnerable’ list. I wrote to them after to say how brilliant their staff had been and what a big support they had been to me. People need to know what they are doing right as well!”
Tiffany feels that although she does offer feedback to companies herself about positive or negative experiences, being one of many on the panel enables her to have a stronger voice.
“Coming together as many people we can make a change. If I go to a company to give them my thoughts as a single person they won’t take much notice. But as a group like this we have the backing to actually make the changes happen.”
“I love the fact the research is on a variety of topics, and that by me taking part and responding I am also helping myself. It really does make a difference to our lives. I get so excited when I see an email from RiDC in my inbox!”
