When Denise Stephens was diagnosed with MS at the age of 24, she was disappointed to find that a lot of equipment recommended to her made her feel like she was “living in a hospital”. Determined to find things that worked for her, and share her discoveries with others, she founded Enabled by Design, a community of people passionate about design for all
I was diagnosed with relapsing remitting MS in 2003. At that time I was working as a forensic toxicologist, but within six months of being diagnosed my health went downhill very quickly. I had a series of disabling relapses and got to the point where I couldn’t walk, couldn’t use my hands and couldn’t see out of my right eye. I was heartbroken to have to give up my job, after working so hard to get into forensic science.
At the time I was living with a friend who was working long hours, so I was practically living on my own. I was really struggling with day-to-day tasks and keeping my independence was so important to me. At my worst point I remember being sat on the kitchen floor, almost in tears, because I needed to open a jar of pasta sauce. It probably sounds ridiculous, but I couldn’t use my hands to unscrew the lid and my friend was at work. It was the only thing I had in the house to eat and despite trying everything I could think of, I just couldn’t open it, so I didn’t eat that night.
After being discharged from hospital, I was referred to an occupational therapist (OT), who came to see me at home. They assessed me and gave me a range of equipment so that I could carry on with my day-to-day life as safely as possible. I was having a lot of accidents at the time and falling quite often. I had a bath that had a shower over it and I had a number of falls getting in and out of the bath, as well as while standing in the shower. So I was given a bath board to help me get in and out of the bath more safely.
I’d also been burning myself while using the kettle and trying to lift hot pans. My hands were quite weak and numb and I also had tremor. So I was given some tools for the kitchen to help improve grip, which included cutlery with foam padded handles. I thought all of this stuff was pretty amazing, as it helped me to live as independently as possible. But as time went by, I became surrounded by lots of white and grey wipe-clean plastic goods, which made my home start to feel like a hospital. I had already spent quite a lot of time in hospital and I really wanted to get away from that! It felt like I’d done everything in life to get to the point where I lived in a nice home that I could decorate how I wanted, and then suddenly you’ve got all this clinical looking stuff and it doesn’t really feel like your home anymore.
Function and feel
At that point I didn’t realise that I was interested in design. But as time went by I started to look for more mainstream products that did pretty much the same sort of thing and met my needs in terms of functionality. Some of the equipment I had been given didn’t work particularly well. I think that people often assume because these things have been made for people who have a disability, they must work – but this isn’t necessarily true and they can sometimes come with an inflated price tag because they’re seen as a specialist product.
My OT had tried to persuade me to get a kettle tipper and I really didn’t want one. To me they look like a seesaw for your kettle! So I decided to buy a Breville Hot Cup. It sits on the counter in my kitchen; you put a cup underneath the nozzle and it dispenses a cup of hot water, so I never have to lift up a hot kettle, which is fantastic. I think it looks really nice and when it’s boiling it lights up with a blue light, so it looks a bit space age. I’ve got friends who don’t have a disability who’ve asked me where I got it because they really like it too.
Enabled by Design
Over time, while looking for mainstream products, I started to think, these are really useful, surely if I share them with other people in similar situations, they might find them useful too? So I set up Enabled by Design with the idea that it would be a community to share good products and good design that can help to make life easier. And that started back in 2008. Originally it was going to be like an eBay for assistive technology, but I decided that this was just going to end up listing the same white and grey wipe-clean products that I’d been trying to get away from. That really wasn’t what I wanted, so I started to think that design would be the key to this. And maybe speaking to designers just out of university, who are relatively new to the design world, might be a good start.
I’d already spoken to and heard talks from some companies and designers, and it was almost as though they felt that disabled people were a niche market. They wouldn’t be thinking about how to make things more accessible – that would be too specialist. But I’m really passionate about mainstreaming accessibility. I think Design for All is a very good starting point and it’s important to try and build in accessibility from the beginning. But I think on top of that you need to build in the ability to customise things, because everyone’s different. You need to be able to modify things to help make them work better for you.
I think the design community and public perception is changing. When I first started out I heard some people saying, “It’s a bit pointless, it’s a niche market, people aren’t really interested in disability products. What’s the point?” But as time has gone by, I’ve found that sometimes it’s about meeting the right people. There are lots of makers and designers out there who are interested in working with people with disabilities and people with all sorts of needs. Enabled by Design started out looking at the short term – what’s already out there, what’s on the market and what works well.
But over time we also became interested in the medium term – modifying and fixing things to work better for you – as well as the longer term work of speaking to designers and the design community to encourage more accessible design. Some health professionals don’t consider the aesthetics of an assistive product to be important, but sadly aesthetics can be stigmatising. This can mean that some people don’t use the products that they actually need and might be putting themselves in a vulnerable position as a result.
I remember being 25, not long after being diagnosed, and being offered a zimmer frame. I remember turning it down and then feeling really bad, in case they thought I was being vain. I just remember thinking, “I really don’t want to walk down the street and have people staring at me, wondering why I’m using a zimmer frame when I’m 25!” Everyone is different. For some people they don’t mind how something looks – as long as it works for them. But for other people they might not use a particular product because it looks a certain way or how they think they might be perceived if they use it. I’ve met people who feel this way about walking sticks and crutches. One size doesn’t fit all! You need to have choice – that’s really important.