Can you tell us a little bit about your situation as a carer and how it has impacted your life?
I’m a carer for my wife who - amongst other conditions - has chronic pain and fatigue as a result of complications with a spinal condition. She also has some trouble with cognitive function.
Being a carer can make you isolated, and with the feeling that you’re the only one going through what you’re going through. I think naturally I gravitate away from communities that have members in a similar situation to myself. The last group I would want to join would be a group for carers. That sounds like a strange point of view, but sometimes you want to forget the position you’re in as a carer and just focus on dealing with the challenges it brings with the support of others.
It’s been difficult to come to terms with the lack of empathy that exists in society. Even family members can struggle to understand. As a carer I share most of my wife’s experiences in-person, and it can be tough getting your head around how people behave. My wife very much has an ‘invisible’ impairment, and it’s only really noticeable by the fact that she uses a walking stick and walks extremely slowly. But if you were to see her sitting down you might not realise there was anything wrong. It’s been especially hard for her to accept that she’s never been able to pick up our young daughter, or that she’ll never be able to run or take part in vigorous exercise again. The hardest challenge of all can be to stay positive when you take knockbacks.
The lack of visibility sounds like it adds an additional challenge to the situation. What have you learned from existing within these challenges that you might not have known before?
I’ve learned that the UK is not a great place for people with physical impairments, especially outside of cities. I wasn’t expecting that. It’s hard to believe that in a fairly wealthy western country it’s still troublesome for somebody with mobility problems to get about without difficulty. Inaccessibility on public transport for example steals away a person’s autonomy, and it troubles me that things don’t seem to be considered with this in mind from the beginning.
We have a welfare system and of course the NHS in the UK, and in many ways this is fantastic, but it comes bundled with many counter-intuitive hurdles to progress through such as Universal Credit and PIP. If you can’t work through disability and you aren’t self-sufficient, you come to rely on benefits like these. Applying and meeting the criteria to qualify for them is often a source of pain and worry. Again this can leave you feeling that nobody cares about you or what you’re going through, and that you’re nothing more than at best an inconvenience, at worst a fraud.
We’ve become less wasteful and more efficient people too, thinking about how we can reuse or repurpose what we have. We’ve really had to consider the things that are important to us, like family and the time we spend with each other.
I can’t imagine the kind of stress that might put a family under. How would you say your relationship has been impacted by this?
The immediate thought is that it’s strengthened our relationship as a couple. I think we can handle a lot as a unit, and we’re able to work together to come to a solution to most problems. Being thrown into a situation where you’re required to help a person with day-to-day tasks can be strenuous for both parties. We’re not the worst off by any means, but I think we’re more grateful for the experiences we have. In these times, couples can sometimes live largely separate lives with their own money, circles of friends and their own activities and hobbies. Our experiences if anything have drawn us closer together, and made us think about the path we’ll be taking.
Strangely my wife has been the biggest support! I admire her strength and determination, and I don’t know if I’d be able to go through the same. She went through major back surgery a few years ago, and it was terrifying for me so I can only wonder what was going through her mind. The way she handles herself means that it’s easy for others to overlook what she’s been through. For me she is a continual source of inspiration.
Sounds like you’ve become more resilient together and created new routines.
Has it had an impact on how you plan for the future?
I’m really excited by what I could be getting up to in the near future! After the company I worked for went into liquidation I was forced into going full time remote. It was worrying at the time and we were left short financially, but work picked up quickly and are going really well at the moment, so it seems to have been a blessing in disguise. I’d like to further refine my role as a UX designer, and truly nail down the remote lifestyle! We’ve talked about spending time in other countries while working. That would be a dream come true. Our eldest is off to university, another has a year left at college and the youngest will be going to high school soon, so there’ll be big changes going on within the next couple of years.
I’ve been focusing my thoughts on time. Turning 40 recently has made me think about what getting older means to me. I’m not fussed about being ‘older’ at all, but I’m conscious that I don’t have time to mess around trying to find out what I’d like to be doing going forward. I read in an article that Vera Wang didn’t make her first dress until 40, so there’s hope yet! We’ve got the whole Brexit and political turbulence thing going on in the UK at the moment, and this is really making us think about our future. We’d really love to move abroad, but healthcare could make this problematic. It’s not the sort of problem we’d let get in our way if we were determined, and the sort of people we are I’m sure we’ll think of a way around it.
You do seem very positive and creative at finding solutions. Speaking of that, how do you think your experiences as a carer have impact your approach to design and specifically your field of UX?
My experience has definitely put accessibility of digital products at the forefront of my thoughts. It’s actually made me realise how a small change to how something works can instantly make something usable. So this has now become central to how I approach my design process.
It’s taught me to think and plan ahead! There isn’t a time where I don’t have to think about the implications of something we’re about to do. Even things as trivial as going on a night out. If I used going to the cinema as an example; I’m thinking about whether parking is close to where we’re going. Are the seats comfortable enough for someone with a back condition to sit for a long period of time? How long is the film? Is there an end seat available so we can get in and out easily? Carers using digital products will have these same concerns, so I’m more likely to build user personas that consider this angle.
The biggest take away personally is a stronger sense of empathy for others. Small actions sometimes have a big impact on someone’s life. If you work that little bit harder to make that impact, you’ve done good today!
Hearing those examples, I’m sure your work has gotten so much more thoughtful and intentional.
I remember in our first conversation we really connected over the impact that being a carer has on opportunities in career. The experiences make you better at your craft but may also limit how you participate in a normal 9-5 Monday to Friday schedule.
Do you have any recommendations for how companies or communities can support caregivers?
This is tough, being the sort of person I am I’d find it hard to accept support. I think the biggest thing is we’d just like a little more understanding. I’m self-employed, but really that’s only come about as a result of employers being slow to adopt policies that help carers. In the UK, you have a legal right to ask your employer to consider remote or flexible working, but they aren’t obligated to offer it to you. As a result it really only puts you on their radar as a potentially troublesome employee, so it’s actually self-deterrent.
In 2019 this seems utterly ridiculous. Employers could do with utilising more progressive thinking, and that’s not just to act as a helping hand toward carers. There’s a massive pool of talent that gets overlooked because they’re unable to attend the office environment, or they need time out to take somebody to an appointment. So much more could be done without damaging productivity.
I don’t think I’d have been able to be an effective carer without having had the opportunity to work remotely, so networks like Behance, Dribbble and LinkedIn have been invaluable to me.
So much of those opportunities for improvement are what we're hoping to shed light on in our conversations here.
What other roles do you think community plays in caregiving and if you could give advice to someone new to a caregiving role, what would it be?
I think for most people being part of a supportive community can be a really positive and helpful thing. I find that I don’t often engage with people about my position as a carer, so I haven’t really had the opportunity to be part of a community as such. I think this is partly down to the area in the UK we live in too, which is quite rural and has a high percentage of elderly people. If we lived closer to a larger city, I imagine things would be quite different. When I take part in online communities, I definitely choose to focus less on the goings on in my personal life.
I think most importantly you have to give yourself time to adjust to what is happening. It’s easy to believe that things will never get better, but being human is about adapting and overcoming and you will! In terms of resources - I’m a member of a freelance group on Facebook called Freelance Heroes. It’s not a group for carers at all, but rather other freelancers who work from home or remotely.
Thanks for opening up about how being a caregiver has changed your life and sharing so much helpful insight with us. Your positivity "because of" rather than "in spite of" your circumstance is really beautiful.