A rant about accessibility

I feel like a fraud.

All those years I’ve spent talking about empathy and understanding.

Talking to people about understanding the user and getting to the root cause of the usability issues.

I’ve seen a completely different side to it all recently. A side that makes me want to go back and rethink every single design solution I’ve ever suggested.

Let me explain.

Late last November, my Dad suffered a severe stroke. He went from being an active, strong, vocal professional with no intention of retiring (he’s 75!), to someone who can hardly walk, hardly see, hardly talk and for whom every single action is a struggle. A real struggle.

In a heartbeat. Literally in the space of a matter of seconds he collapsed and woke up the next day in a stroke hospital ward with zero memory of what had happened, no idea where he was and surrounded by people he didn’t know. We couldn’t see him for reasons of COVID lockdown and this persisted for 3 months. I can’t begin to understand how that felt from his point of view, but I’m damned sure it was utterly horrible.

I won’t go into the trials and tribulations of what happened between his stroke and getting him home, as I’m sure many others have suffered much worse and it was a problem shared by many around this time.

However, here we are.

He is home but far from the physically able guy who we all knew before November. He talks like someone who has drunk 12 pints of Stella on an empty stomach. He has no ability to judge distance as one eye is pretty much permanently shut. The whole right side of his body lacks co-ordination and mobility. His mind feels like he’s permanently struggling to find the metaphorical end of the sticky tape roll. It goes round and round, knowing what he needs to say but he can’t find a way to say it. His brain has been rewired but on terms he hasn’t been able to define. He can’t drive. He can’t cook (to be fair he couldn’t cook beforehand…but for reasons of a lack of talent rather than a lack of mobility). He can’t describe how he feels. His sentences are short and blurted, like an old tap with air pockets. His concentration is shot to pieces. His memory is more like a goldfish than an elephant. It’s like he’s trapped in a broken mind maze with the lights off. Stumbling around trying to make sense of possible ways out but finding dead ends or just endless voids.

Bear in mind he used to go to the gym regularly. Go on long foreign holidays. Working at the top of his profession with no intention of stopping. That’s gone. And he had no choice in the matter, and no time to consider it. It's his worst nightmare.

Anyway, each and every Friday I look after him.

It isn’t much but it gives my Mother some respite and my aim is to give him a day out somewhere new each week, a decent lunch with a glass of chilled Sauvignon Blanc (which he always enjoyed), and an attempt to trigger some memories relating to that venue or activity. It’s also useful to help him build up new memories which we can use to improve his short term memory retention…something that appears to have been blown to smithereens.

And this is where my anger levels - and resultant guilt - start to rise.

Nothing to do with my Dad or his condition, but with the woeful lack of consideration given to anyone who is anything other than able bodied.

Restaurants. Cinemas. Walkways. Pavements. Cars. Car parks. Gates.

The list is endless.

Everything we deal with and take for granted on a daily basis is a monumental hurdle (and often impossibly so) to overcome if you have to negotiate it in a wheelchair. And this is all based on the assumption that the wheelchair inhabitant has an able bodied companion to do much of the ‘overcoming’. I can’t even begin to comprehend how some people who attempt to live independently in a wheelchair can cope without wanting to hurl something foul at everyone within range - be it verbal or physical!

Dad was prescribed a ‘standard issue’ wheelchair by the healthcare authority that managed his transition from rehabilitation ward to his home. It’s heavy, clunky, sweaty, archaic and difficult enough for me to manoeuvre. Bear in mind I’m 6’2” and built fairly well, so consider my ageing mother who is half my size and strength who has to deal with it daily. Dad can’t ‘help’ when he’s in the chair. He’s just a monumental weight that needs to be manhandled into position, up hills, down ramps, into and out of ‘accessible’ toilets, into buildings, out of car parks and weaving in and out of café chairs and tables. The handles cause your hands to sweat profusely when you are pushing it. The ‘wipe clean’ seat must be torture to sit in for any length of time (though Dad refuses to complain). The raw strength required to haul it in and out of the boot of a car (which are all far too high and complex to be comfortable) is astonishing, and don’t even get me started on the number of times I’ve nearly lost a fingertip as it collapses for transport. I also won’t mention how many times I’ve forgotten the padded seat as it is a separate item that you have to remember to pack…I now have two spare padded garden chair seat cushions in the back of my car for any such eventualities! Talk about latent behaviour.

I know that this isn’t new news.

I just feel - as a designer - that I’ve talked the talk but haven’t actually opened my eyes properly to the kinds of issues that my professional empathy should have afforded me. I have no doubt that there are thousands - possibly hundreds of thousands - of people who have complained constantly at councils, schools, universities, workplaces, and institutions all over the world about how awful this situation is. I don’t wish to sound like someone who has just discovered something that everyone should know about. I know nothing here is new.

I should have known about it. Like…really known about it.

I endeavour to take Dad somewhere completely new every week.

This has thrown up its own issues. Every pub or restaurant I plan to visit has to be contacted to see if it has appropriate access or toilet facilities. Every venue needs to be checked to see if I can actually get a wheelchair along the path without either getting stuck, shaking the living daylights out of Dad’s body, or simply encountering some bloody steps. The other day, I attempted to get from a car park to the cinema which is located in the same complex. Under normal circumstances it would take me about a minute to walk down to the cinema entrance, but with Dad it took me nearly half an hour, because the lift was broken, the steps were impossible, the pavements were broken and I had to wheel Dad along the road in order to get him to the front of the cinema. Notwithstanding the length of the journey or the effort required, the fact that I had to use the public highway and hope that there were no cars coming was downright dangerous. And that was just to get him to the cinema entrance. Don’t get me started on the choices that people in wheelchairs are limited to if they want to watch a movie. They have to sit 6 inches from the screen, whilst everyone else can sit nice and elevated to experience the film as it was intended. I refused, so I booked Dad a VIP seat and pretty much carried him up to the seat. He has as much right to enjoy the film as I do…even if he can only see it out of one eye!

Aside from the sheer impracticality and ill-considered access, there’s also another issue here.

Dignity.

This is important. Really fucking important.

You can find ways to overcome a physical obstruction, albeit with strength, tenacity, guile or assistance, but the big kicker is the fucking massive dent all of this has on your dignity. My Dad has had to swallow his dignity to simply exist.

To simply exist. And he was…and is….a proud man.

He has to ask people to do things for him that he would previously been able to do in a heartbeat. He has been determined enough to ensure that he can take himself to the toilet, shower himself, dress himself and do some of the simplest elementary tasks that mean he has the tiniest splinter of dignity and preservation remaining.

But it's hard. Really hard. You can see it in his spirit. He’s fighting and refusing point blank to let this situation completely break him. He has had to shovel away 90% of his dignity but he will hang on to that remaining 10% if it’s the last thing he does.

I feel it. As his son and carer every week, I find myself thanking people for the simplest gestures. Walking along a pavement and having to make someone wait because the pavement isn’t wide enough for the wheelchair and anyone else. Apologising to people in a pub when Dad has to walk carefully, clutching my shoulder and right arm to the toilet, trying with all his might to keep his right leg from knocking into peoples’ tables and chairs. It’s not my fault or Dad’s fault but we find ourselves feeling grateful for things we shouldn’t have to be grateful for.

The good thing to come out of this is I have renewed faith is the kindness of strangers. There are certainly a large proportion of selfish pricks wandering around, but I have encountered numerous genuinely helpful people on my Fridays with Dad. People who see the struggle and give Dad a little bit of his dignity back in their actions and in their non-patronising smiles. For that I am truly grateful.

So, what’s my point?

These struggles are not unique. Countless people encounter these struggles every hour of every day and soldier on. I’m lucky enough to get back in my car after I’ve dropped Dad off and re-enter my able bodied world where I can get up in the night for a pee, walk to the pub with a mate, run around with my kids, have a free and easy conversation with my wife about utter nonsense, pour myself a G&T, take the dog for a stroll. Everyday stuff. Stuff most of us take for granted.

My point is that as designers, we are really quick to say things like “I want to design things to improve peoples’ lives” or “I want to make things better” but I would urge you all to really think about the struggles people face. Not the so-called empathic, persona-led idealism that design projects often only allow, but the real, gritty, everyday shit that can grind people down. Emotional, draining, dignity eroding shit. Don’t just say things like “inclusivity matters” - make absolutely sure your solution is properly inclusive. Walk a mile in their shoes. Their actual shoes. Not a Pinterest set of shoes. Not a ‘workshopped’ set of Post-It noted ‘insights’. Don’t just broadcast it across your company website to secure more business.

Actual. Fucking. Shoes.

I feel guilty about my part in many of the projects I’ve worked on over the years. That I’ve made assumptions. Decent assumptions, but assumptions nonetheless. I’ve not fought hard enough to convince clients of the need to better understand the realities. The real realities. Not the theoretical realities.

I get it. Not every project can afford to spend the time researching this stuff. Sometimes you have to make some educated guesses. Well informed educated guesses. But I know that - despite protestations from many of my peers - many of these educated guesses could have been a little more educated and diligently explored than they were. If we are all being honest with ourselves, we know that more time and effort could have been spent on the ‘finding out’ rather than the ‘making stuff look good’. Because the ‘looking good’ bit is more impressive in a board room, projected on a screen in front of stakeholders. The finding out bit can be glossed over with a myriad excuses of budgetary limitations and time constraints. It’s easier to sit at your computer and google than it is to find stuff out first hand.

I’ll admit this issue is close to my heart at this point in my life and yes…I can be accused of soapboxing because it now suits me to soapbox.

I’ve got a very personal bee in my very personal bonnet.

But the whole experience has made me a little less precious about the ‘deliverables’ and a little more open to arguing for greater diligence and tenacity in discovery. Proper discovery. Not just the stuff that most agencies say they do.

I know this all too well. I’ve been there. There’s always pressure to ensure the final deck looks great and has good breadth and variety. Rarely does anyone have the kahunas to say this is 'rough and ready but we spent the bulk of your budget exploring and lifting stones to see what was underneath'. That tends not to go down well when you share the PDF they intend to show their bosses.

If you can’t find this stuff out early on, then at least structure the project to allow for change to happen down the line, rather than simply narrowing the scope at each stage and putting more pressure on delivery and compromise. The way it always happens …despite every design thinking soundbite uttered at the start of a project to a sea of nodding heads.

Design is powerful. Creativity is powerful. Imagination is powerful.

But design, creativity and imagination aimed at halfhearted or misinformed assumptions just generates lovely looking irrelevance. You can’t bake a decent cake without decent ingredients. You can make the cake look great, but it’s in the eating…right?

No one ever asks for another slice of shit tasting but beautifully looking cake.

But people like looking at lovely pictures of beautiful cakes.

I’ll stop now. I’m at risk of disappearing up my own analogy arse! And apologies - reading this back it feels a bit rambly but hopefully you get the point.

It's very personal.

Over and out.

Russell