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Sarah Stokes
June 3, 2019

A few years ago now, my Mum tricked me into signing up for a race and joining a running club. By the back end of last year, I was in the middle of training for a marathon. I’ve pretty much, for the whole of my adult life, known I should take my health more seriously, and was finally about to.

HOW THE F*** DID THAT HAPPEN

When I broke my foot on Christmas Eve, it wasn’t ideal. I got out the car after we’d been visiting family friends at the pub, catching my bag on the door and its contents spilling over the driveway. I bent down to scoop everything back up and when I tried to stand up - I couldn’t. I couldn’t put weight on my right foot. We iced and elevated (the go to), and then I crawled up the stairs to bed.

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I got out of carving the turkey on Christmas day, but that evening when I had to get my sisters boyfriend to move my monopoly pieces because I couldn’t shuffle over to do it myself, we thought I should probably go to the walk-in centre the next day. They asked me how I injured myself, and I told them I didn’t know. They asked if I’d been drinking, I told them yes, I’d had a couple of pints. They didn’t seem to believe I hadn’t had a whole lot more. Every single person who’s asked what happened since has made similar comments, bringing me to my first lesson.

1. It’s exhausting to keep explaining ‘how it happened’, and you shouldn’t have to. I was annoyed when people asked - I didn’t mean to be rude, but I was tired of repeating myself. I didn’t want to have to justify what happened, but I felt like I had to and that turned me into a very defensive person (and I’m sorry about that).

The thing is, I didn’t even KNOW my foot was broken until the nurse collected me from the X-ray room, wheelchair in tow. On the way back to the consultation room, the nurse started explaining what was actually wrong and what happens next. I was still in a little bit of shock from seeing the wheelchair rounding the corner, it didn’t feel real and so I think I was trying to make light of the situation by making jokes - and I got told off for not paying attention and taking it seriously. Bearing in mind the wheelchair was a pull along one, we were facing opposite ways and I couldn’t hear her properly anyway….

2. We all deal with things in different ways. It doesn’t mean we’re any less deserving of empathy. Just because someone jokes about what they have going on doesn’t mean that they don’t care, or that just below the surface they’re not absolutely terrified. We could all be a lot more kind and caring towards everyone.

3. Make sure people can understand the information you’re giving them. Especially when it’s important. Something seemingly as trivial as facing the opposite way when wheeling along the corridor, still in shock meant I couldn’t really hear and wasn’t in a position to understand what the nurse was trying to tell me. If I were more shy, or timid, or really couldn’t hear her to begin with, I could have missed important information about my care - and when that information was completely in a verbal format, if I missed it I could have been utterly screwed.

The next day was going to be a really interesting one… me, my sister and my Mum had planned to go shopping in the sales, and we weren’t really sure about how to make it happen. After a little bit of research, we found out intu actually offer quite a lot through their mobility services, shopping was happening!

THE BIG SHOPPING EXPERIENCE

The first thing we encountered was finding space in a coffee shop for breakfast. My sister's boyfriend decided to join us because watching me being pushed in a wheelchair when all of us were so new to it was actually hilarious...for a little bit. We looked inside, but it was really busy and we couldn’t have manoeuvred me to the only table for four people. Even at an outside table I couldn’t tuck myself under, meaning eating food without dropping it everywhere was going to be a tricky one.

4. Seating is not accessible in so many places for someone with a wheelchair, and it makes you feel excluded. I had to sit outside where it was cold, noisy (my Mum has a hearing impairment), and the seating wasn’t suitable for us to begin with so the whole experience was just awkward and undignified. If I hadn’t had family around me, and we weren’t laughing it off, I would have felt embarrassed.

Then, we went shopping for clothes. Something I’d never even considered before then was the visual accessibility of rails. When you’re walking past you can scan the top and bottom at a relatively high speed, turning your head from left to right. I found that with Mum wheeling me around, it was difficult for me to turn my head so we missed a lot of stuff, and had to take it really slow. I had to keep reminding her that I couldn’t see what was going on, and we both got frustrated. Her because I kept telling her she was wheeling me wrong, and me because I wasn’t able to take part in the shopping experience properly. I was feeling pretty useless, however, I was given a job to do - clothes horse!

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5. It’s not just the immediate problem that affects your day to day life. My foot was broken, in order to get around the wheelchair was a must. It wasn’t easy to turn my head to look around me, restricting my movement restricted my field of vision. That, in turn, affected how isolated I felt not being able to properly take part, and how safe I felt because I couldn’t see what was coming around the corner (we had to get my sister to walk in front so we’d avoid all the obstacles). Over time, as you’ll see, there were more and more problems stemming from me breaking my foot. If someone were to look at me and try to understand my problem, they’d only see the foot, but it was so much more than that. To understand how to help me, they’d need to look beyond the foot.

It was, then, wandering around the makeup counters. @BenefitUK were great and made me feel really comfortable while they did my eyebrows. @Clinique_UK not so much - when we rolled past to look for what I was after, the lady at the counter spoke to my Mum and not me. Maybe it’s the fact that she physically bent down to speak to me too, but I felt very patronised. I was able to make my OWN decisions with my OWN money, and it wasn’t until Mum actually walked away to look at something else that they addressed me and only me.

6. Address the person you’re speaking to, and NOT the person who’s there with them. It’s insulting to address somebody else when you’re capable of speaking for yourself. And actually, with my Mum, we experience this often because of her hearing impairment. We both value our independence, and on that day it felt like someone was trying to take that away.

My most frustrating shopping experience came with @UrbanDecay, and the way they encouraged people to share their new looks. They had a tablet where you could take and share photos which were placed head height, and I obviously couldn’t reach being about half of that in a wheelchair. The most insulting thing was their slogan ‘pics or it didn’t happen’. I asked Mum to roll me away, and talking about it later decided it really wasn’t ok. I messaged them on Facebook, and they’ve said they’ll pass the information on to the Visual Merchandising team who design and create their displays. I have to say that it drove home the message that I’m very fortunate to work in government where people take accessibility seriously (yes, partly because we have to) and it’s part of what we naturally think about when designing user experiences, and I look forward to the day where it’s something everyone thinks about.

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7. It’s not ‘normal’ to cater for accessibility, but it should be. It’s pretty standard in government. Not everywhere else, but it really, really should be to create an inclusive and welcoming society.

RETURNING TO WORK

I’d moved house not long before Christmas, and was determined to return to work afterwards because I’d get bored and isolated with where I was living, but the bus journey took nearly two hours each way and I wasn’t allowed to drive.

I was exhausted on my first day back because I’d not long been told I was allowed to put some weight through my foot and still wasn’t allowed to travel long distances. To top it all off, on the way home from my first day, some ignorant b*****d, not looking up from his phone, kicked the base of my foot (where the break was). I was in absolute agony. I worked from home for the rest of that week, and we agreed that I could start earlier and leave earlier to avoid the busiest periods. That was better, but it now meant getting up at 5 am because it still took me a long time to get dressed and showered in the morning without help, and I was returning home around 7 pm.

Travelling on the bus was a bit of a nightmare too. There were areas for buggies and wheelchairs, but nowhere where I could stretch my foot out like I needed to. The crutches are very unwieldy and rushing on and off a bus meant I dropped my crutches a lot, or I got very panicky if I couldn’t immediately find somewhere to sit. But, the people on my commute always helped me without fail.

8. When services aren’t designed for accessibility, everything becomes a workaround. I couldn’t rely on a simple bus journey. It wasn’t always horrible, but it wasn’t easy at all for me to travel or carry my bag, or any last minute shopping I needed. When I had a good experience, it was because of the people on my commute who saw me struggling, or the ways I found of attaching shopping to my crutches that got me through, but it wasn’t smooth or seamless, and it could have been so much easier if it was considered.

As I did make my return to work, the team were really wonderful actually, and some of my favourite days with them have been them driving me to lunch. Sounds simple, but with only being able to travel between home and work, and relying on Tesco deliveries for meals, I was starting to feel trapped, and so the fried chicken made me happy again.

GETTING OUT AND ABOUT

First I made my return to work, and then I started thinking about getting out and about more. I visited the National Running Show, about three weeks after the break. Firstly, it’s embarrassing to go to a running show when you can’t even walk, but they looked after us so well. Second, (even though we got VIP treatment at the show so our life was a little easier), my Mum and our friend Claire made it into such a laugh on the day that I didn’t feel like a burden at all.

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Then it was getting out to a hill walking course. I was going absolutely stir crazy, unable to go outside on my own if I didn’t know there were frequent places to rest and take the weight off my foot, and having to worry about the terrain in case I’d hurt myself again.

My friends in Scouting (and my Dad) were wonderful though. They drove me there, gave me the only bed in the bunkhouse, and allowed me to hang around the course for the weekend. They made me feel useful even if it was only admin tasks or watching the fire. They hung out with me, had a singalong, and even when I fell asleep on the sofa in the classroom area (I didn’t sleep well at all during those days because of how uncomfortable I was) and they all came back in off the hills, they didn’t wake me up and just carried on the lesson quietly.

9. Just because you’re impaired, it doesn’t mean you’re useless. It doesn’t mean that you have nothing to give or that your value is somehow less. Feeling helpful and useful does your self-esteem wonders.

CRUTCHES ARE NO MORE

At the end of January, I eventually had a follow up at the hospital. There were several things I had to do that day under the guise of one appointment, and no-one really told me where I needed to be next once I’d left my session with them. I was lost and confused.

Had I been more aware of what was going on, I’d have been less distressed when it came to the consultant actually speaking with me. I was sat in one treatment room, with my moonboot off and crutches to one side. At this point, I’d had the X-ray, but didn’t know the results. I was asked if I could go to the room next door where the consultant was, but I didn’t know if I was even allowed to walk without crutches or boot yet so I said I didn’t know. Then the consultant and nurses proceeded to squeeze into this tiny room to tell me that my foot was fine, they would have shown me how it was healing but that was on the screen next door which is what they wanted to show me. Well, you should have TOLD ME THAT THEN, I screamed internally. Eventually I hobbled through, because don’t forget, I hadn’t been allowed to walk for a month.

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In fairness, they were great in answering all my questions because up to that point I’d had virtually no information from the start about how exactly my foot was broken, how long it might take to heal, what my limitations would be and what my recovery period would be like. Fair play to the consultant because I know they overran on the time they should have spent with me, but I had so many questions that just hadn’t been answered until then. A combination of stress from the day, and relief that I had answers and I was going to be ok, meant I cried on the way home.

10. Often, you’re one small part of providing a wider service, so consider your impact. I didn’t go to the hospital JUST to have an X-ray, or fill in paperwork, but as the people doing those jobs, it’s difficult to think like that when you’re not part of the whole process. But, as a user of that service, I don’t think in those singular terms and I do see the bigger picture, which was very, very disjointed and distressing.

STARTING TO MOVE (BUT NOT QUICK ENOUGH)

For the next few months, I was walking about unaided and doing very light exercise (yoga, very slow walks), and gradually getting back into the routine that I’d lost. I still wasn’t back to normal (the consultant said no running for a while), and at that point in my life, I think I needed the ability to exercise in the ways I loved as part of a healthy lifestyle more than ever.

At work, we were in the middle of preparing for a GDS assessment. Everyone who’s been in that environment knows they can be pretty stressful, and a lot of the feelings I was having about work, on top of Dad waiting for some pretty important medical results, were feelings I couldn’t just run away from. Yoga worked sometimes, but I couldn’t always switch my brain off like I wanted or needed to.

In life, food has always been a coping mechanism for me, and at this time, unable to use exercise as that coping mechanism, I began to eat my feelings. A combination of being worried, not eating well, not sleeping well, or putting off the little exercise I was at least capable of doing, and then feeling guilty about it all to boot, it began to take its toll physically and mentally. I tried to hide a lot of how I was feeling, passed a lot of it off with ‘ohhh, it’s normal, it’s just GDS’ but I think some people around me knew that it was a bit more. If you were around when we heard the news we’d passed, then you’ll know that I cried a whole lot - and that’s why. I was relieved. The first thing I did when we heard (after crying) was go outside, walk and BREATHE.

11. Your mental health suffers (and it’s easy to forget that). I’ve never actively thought I feel bad, so I’ll go for a run, but I do know that when I go, I feel better. When I was no longer able to use that as a coping mechanism, my mental health declined. I thought sharing how I truly felt would make me vulnerable. I thought it made me look weak. I thought it would look like I was incapable of doing my job, when the very fact that I still was and doing it well in spite of everything made me strong. I’m sorry I didn’t, and I’m sorry I lied. I hope you’ll forgive me.

AND NOW….

After that news in March, and a well deserved holiday and sometime later, I’m now getting back into a routine. It’s been a real struggle to be honest because I’m not as fit as I used to be but my foot has healed well, and I finally went for my first run yesterday evening.

I learned some things along the way, and as working in the world of user experience, it was hard not to relate everything I was learning back to that.

In the beginning, what I was learning was more about the immediate impact the injury had on me and how I interacted with society, and over time it became more about how I coped with it. I wish it hadn’t happened of course, but I’m glad that it’s helped me have more empathy with our users. I hope you’ve learned something too.

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Written by Sarah Stokes — User Researcher, Difrent
@SarahRoseUR

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