Oh, the pain

There is something people don’t talk much about (if ever): pain and disability.

Next week Joe O’Connor will give a talk during Inclusive Design 24, Pain. (In passing let us thank the Paciello Group for organising the Inclusive Design day every year for the past 4 years.)

Living with extreme pain takes energy. Navigating interfaces reveals a great deal of friction that takes more energy than is available. Discussion of suggestions for reducing friction that will help all.

From what I gather, this talk has got to do, in part, with Joe suffering from a stroke in 2015, but the pitch shows that he’s going to go universal, and here’s my input on the topic: there is not much discussion about how disability comes with pain. This is not easy to write about it because of the intimacy, so bear with me as we embark on one of my hardest articles to write and I lay my heart bare for you.

I haven’t really ever spoken out about the pain I feel the way I’m going to do today, except to a select few – and the occasional “Heh, migraine” on social networks, without too much detail, just as a “hello I’m still alive and I’ll come back but for now I’m away from keyboard, see you later” heads-up. I don’t often talk about it because I don’t want people to define me through this lens: most of the time I’m just a happy fellow who loves nothing more than spend time with family and friends, enjoy a meal and a drink, read books on a terrace and share stuff with people.

Every now and again I tell people about this “migraine” of mine, that lasts never more than three days, fortunately. What happens is that when you have a visual disability, your posture is not right. Would you guess it, your body relies a lot on your eyes to stand up straight; this explains why blind people often have a weird position, the head slightly leaning, the feet hesitant, the tension ever-present. I can’t see with one eye, so the other one became the only captain on board. My head slanted a bit up on the right (where the seeing eye is), and tensions settled in when I became an adult. Tensions in the neck end up in migraines, taking up most of the skull, leaving you sometimes with such pain that you’re even unable to utter a proper sentence, unable to speak three words in a row without such an effort that you give up, throbbing with every beat of your veins, so strongly that you grimace in the night when you wake up to take yet another paracetamol or ibuprofen pill and then wait for it to let you go back to sleep when the pain recesses.

Every day of my adult life has been lived in pain. Every day, at any moment, I can stop and list the places where pain is (While I write this article? Eight.). Most of the time it’s just a noise that I have learnt to live with, but sometimes it’s just too much and I want to bang my head on the walls to make it stop – and I’m not talking figuratively; one day I went crazy and it doesn’t help. But knowing it will not last more than three days is as good an incentive as any to not become completely mad, so you wait it out and hope that the next crisis is as far away in the future as can be – but also knowing that there will always be a new crisis somewhere down the road, usually never more than a few weeks away.

Don’t fret, the pain is being taken care of, we’ve been working on it with my physician and physiotherapist for the last ten years. I’m OK and won’t commit suicide any time soon, in case you were wondering.

I’m sure postural problems are even worse for people in wheelchairs, because physical therapy is even more complicated: at least I can exercise quite easily when I’m not in too much pain. There is something of a day-to-day discipline to always have the right posture, always be mindful of torsions that are slowly coming up in this or that part of the body. Tensions are so usual now that I’m careful about them even while I’m asleep: I wake up at night, just enough to turn and find the right position, and go back to sleep (except when I’m too tired and don’t wake up, and then the next morning is hell).

Every time I read an article about how one should try to understand what a disabled person feels when confronted to a difficulty, be it online on in the real world, I feel that something is missing: there is never any mention of the pain. UX designers, interaction designers, developers, project managers, whenever I hear someone talk about empathy and how one should really know all their users and such, I cringe silently because of this big thing that is missing: pain. It transforms your perceptions and limits your capacities in unsuspected ways. Take this into account in your designs, and like Joe says, reduce the friction whenever and wherever you can.

Pain is one of the major intangible drawbacks of being disabled and trying to interact with the world, one that is never spoken about, and Joe O’Connor is to be commended to want to bring it to the attention of the public.

Thank you for listening, and we’re now returning you to our usual happy thread of nonsense.

Comments

  • Sacrip’Anne (10 November 2017)

    <3

    Même en ayant eu des douleurs qui s’installent, et cette usure et ce frein de la douleur en continu, le cerveau "oublie" et on a pas envie de se souvenir via la douleur des autres. Alors qu’il faudrait.

    Merci d’avoir partagé cette part de toi si intime.

    Des bisous, plein.

    Reply to Sacrip’Anne

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