This world hasn’t been made with us in mind
I know how Niamh felt when that plane left without her. All she wanted was to feel normal, writes Ciara O’Connor
LAST week, a young wheelchair user was left in tears as she watched her flight, with all her friends on board, take off from Dublin without her.
Ryanair defended the incident, saying that she hadn’t booked assistance and was late for boarding. Niamh Herbert says she was there on time, and that she had requested assistance on her original booking, which Ryanair did not transfer over when they had changed her flight for her.
As a sometime wheelchair-user and frequent assistance-requester at airports, I felt for her. Niamh: the world has not been designed with you in mind. That’s why asking for a lift to board a plane is met as though it were a mammoth and unreasonable task. That’s why you were asked could you not chance the steps for the sake of ease. That’s why you were left behind. And that’s why Ryanair was filled with righteous indignation that you complained — because they’ve been good enough to accommodate lots of other disabled people.
While airlines transport many disabled people without incident every day, I know from experience that it isn’t a pleasant experience.
We’ll be talked about as if we’re not there, treated like a piece of baggage, and generally made to feel like a bit of a nuisance. Sometimes the sharp intake of breath and furrowed brow when I enquire about the lift is enough to make me say: “You know what, the steps are fine. It’ll be fine. Don’t worry about it.” I suffer the consequences afterwards.
I have Ehlers-Danlos syndrome (EDS). Most visibly it affects my mobility so I sometimes find myself in a wheelchair, or using walking sticks or unable to mount steps to an aircraft.
It’s a genetic disorder of the connective tissues — the stuff that binds everything in your body. Essentially it means you’re just not held together very well; everything from your joints to your blood vessels to your organs are a bit loose, floppy and stretchy. My body doesn’t work the way it should — and it hurts. If you’ve heard of it before it’s probably from the furtive lurking of the Daily Mail — my illness is perfect tabloid fodder because it overwhelmingly affects women, and it’ll usually strike when we’re young and half pretty with lots of potential: great for sad photo ops. I hear there’s also a woman in Coronation Street with it who is in and out of her wheelchair — something you never see on TV. My kind were delighted with that.
It also tends to come with a couple of other separate but interconnected problems: Postural orthostatic tachycardia syndrome (POTS), for example, which affects the autonomic nervous system — it messes with blood pressure, heart rate, temperature and the gastro-intestinal tract. It was made famous by Deliciously Ella who purports to have healed herself using cacao powder and goji berries.
I often describe myself as “part-time disabled” — it’s an easy way of shutting down enquiries about why I was able to cook a dinner for 10 people last week, and this week I can’t make a cup of tea. EDS is a fluctuating illness, so some days are better, some days are worse.
The scale is different for different people. For me, it means that I can and do often appear completely fine, so I can understand why some acquaintances of mine will be completely baffled by this piece.
The “part-time disabled” label isn’t particularly helpful though; it implies a polarised experience that just isn’t the reality. On the bad days, if there’s no one around, I can’t eat. The kitchen downstairs might as well be in a different country. Getting out of bed to go to the toilet is a Herculean task that I can’t manage more than a couple of times a day. Going from sitting to standing makes my blood pressure drop and I keel over. I can’t think clearly, words don’t come and I feel scared and hopeless. I’m in the middle of a bad spell now — last night I stayed up too late and in too much pain writing to meet this deadline — I couldn’t risk waking up this morning worse again and unable to type. Physically, it won’t have done me any favours: I will pay for it with days of pain.
The days I don’t look disabled I’m still in pain, still throwing up, still dealing with joints that pop in and out, still dizzy, still constantly achingly tired, and still unable to plan ahead because I can’t rely on myself.
The effort that goes into looking this normal is mon- umental. Just existing is a full-time job.
I often feel like a secondhand iPhone. Everything appears to be working but you have to keep it charging constantly. And sometimes it just switches off for absolutely no reason.
I can pretend I’m not disabled, because I’ve created a fragile existence for myself that involves lying down a lot. I’m lying down writing this. As you read, I’ll probably be lying down somewhere. It might sound like I’m living the dream, but the smorgasbord of drugs I have to take completely knock me out: it’s non-negotiable. My bed is often my office, dining room, and reception area — I have been known to receive guests there (and I don’t mean in a sexy way). It means I can bank enough horizontal time to allow me to get dressed and, for example, go out to the pub, sit in a real chair, wearing real clothes like a real person. Often I can control my pain this way.
Such is this cocooned life, surrounded by familiar people, routines, places and a cocktail of meds, that I forget it isn’t normal. It tricks me into thinking I’m okay: every so often I forget myself.
Last summer I went for an internship at a central London publishers. Enough time had elapsed since my last foray into 9-to-5 that I’d convinced myself it would be fine. Like when you wake up with a brutal hangover and swear you’re never drinking again, but the next weekend you’re back gasping for a gin.
Anyway, I flew too close to the sun. My first day was Monday and it turned out to be my last full day. I managed a couple of afternoons after that, before admitting defeat by Friday. While my carefully regimented routine had managed to convince me that I was somehow okay, the demands of getting up early, commuting and actually sitting on a chair in front of a computer proved too much. My body crashed, I couldn’t move and it took weeks to recover. Crashes like this worry me. They remind me of how fragile the uneasy equilibrium I’ve found really is — that I’m kidding myself with this ‘being okay’ business. Especially as I get older, crashes make me worry about the future.
Some days I worry about having a partner who will inevitably become a carer. I worry about not being able to keep up with children. I wonder whether my body would tolerate pregnancy or whether it would be fair on children to have them at all. I worry about the increasingly unlikely prospect of me ever being able to have a ‘proper job’ and being truly independent. It’s not surprising that depression is a common side effect of EDS and other chronic illnesses.
I’m 26. It’s hard for me to accept that I need looking after. It’s hard for me to admit that when my mother got ill and died I thought, “But what about me?”, that I resent those closest to me for my reliance on them. It’s hard to admit that I was slow to write this piece because I didn’t want people to think I was self-pitying, crazy or lazy. It’s hard to admit that makes me part of society’s problem with disability.
This is the invisible part of disability, the really troubling part. This is the stuff disabled people don’t bother anyone else about and why lifts and wheelchair ramps and sign language or audio description on TV is the least of it. If it’s inconvenient or distracting or delays your plane a bit, remember that it’s the tip of the iceberg. Niamh was in tears when her plane took off, not because she simply missed a flight, but because she was reminded that no matter how hard she works to be active, to keep up with her friends and live her student life to the full, the world is unwilling to meet her half way.
It reminded her, and me, that we can fool ourselves as much as we like — we’re not ‘differently abled’, we’re disabled. And it’s rubbish.
‘It reminded her, and me, that we’re disabled...’