Trying to see a bigger picture

Emphasis on trying

It’s been a grim week. The delights have involved (yet another goddamn) urinary tract infection, my abdominal muscles deciding they need to contract every 2 and a half seconds for the entire waking day, and the collapse of my ability to maintain blood pressure when not lying down, leading me to black out unless somebody holds my legs in the air.

In all likelihood these things have been connected, the root cause being infection. (It turns out that UTIs are a special kind of beast: so far, no two have been the same, so I’m still learning as I go.) But it’s psychologically hard to take. I’ve had to start using medication to control spasming for the first time since the accident. In order to enable me to sit in the wheelchair, rather than stay in bed all day, I’ve had to resort to blood pressure medication, which I haven’t needed since leaving rehab. And whilst these measures are hopefully temporary, just part of the reality of dealing with what my life is now, I find it very hard not to interpret these as backward steps.

However, I have been told multiple times that recovery is not a straight-line process, and that I must not let a few bad days distract from a long-term upward trend. Or as one of my oldest friends said to me last summer when he visited me from Houston, a good mantra to repeat at times like these is “this is not my new forever”. And he learned that from his wife. And she learned it from NASA. Because that's what she's taught in astronaut training. Yeah, seriously. Anyway, the point being: if that's what they teach the best people in the world, someone of her calibre, then it is clearly good enough for me. In which spirit, I will try to concentrate here on positives, rather than wallowing in self-pity.

On which note: last week I fell out of my wheelchair.

OK, that probably doesn't sound like a positive. But in a weird way it was. I'd previously been told by a couple of experienced tetraplegics that falling out of the wheelchair was only ever a matter of time, and that it is “not as bad as you expect”. And I guess they were right. Being me, I had of course previously decided that I was never going to fall out of my wheelchair. Because I’m special. And because the prospect terrified me. But then it happened anyway, and I learned a few things. Like: don’t try and go up steep ramps with the power booster function on the manual wheelchair enabled unless there is someone ready behind me. And: that old climbing reflex of protecting the back of my head turns out to be pretty useful, because when I peeled over I ended up just deeply grazing my finger rather than decorating the pavement with my brains. In the end I think it was more traumatic for the friend who was accompanying me to the cafe I was trying to get myself into, who had to witness the spectacle in near slow motion and couldn’t help stop it. For me, it ended up being a weird milestone. Done that, know it can be survived.

One of the reasons that it could be survived being that, almost immediately, several people volunteered to help. I can't have been down for more than 20 seconds before five or six men had come over to help rescue me. Passers-by, and big blokes working in the kitchens of the surrounding premises, coordinated to get me back in the chair. Which was a bit of a weird experience as I’d never had to try and direct this process before. But it worked, before my friend wheeled me back to the care home to get cleaned up.

It certainly wasn’t nice to fall out of the wheelchair, but it was reassuring to discover that people helped spontaneously when it happened. Which actually wasn’t really that much of a surprise. One of the things I’ve been pleasantly taken by on the few occasions I ventured out into the real world is just how normal people have been around me. Since arriving in the care home, apart from visiting the cafe around the corner, my adventures outside have admittedly been limited to a trip to the cinema to see Dune 2 (it really is as good as they say), a couple of trips to the pub with friends to watch the football, and getting the Overground with my dad to practice using public transport (and for a much needed change of scene). I have to admit, each time I found it daunting, in part because I now think of myself as such a complete mess, and I’m so self-conscious about how I look, that my default assumption is that everybody will stare at me in horror. But they really don’t. Nobody batted an eyelid at any point during my visit to Cineworld. The bouncer at the pub during the Liverpool-United game helped my mates get me over the step at the entrance like it was just an ordinary part of the job. Nobody at the Caffè Nero in Enfield gave me a second look.

All of which is, for me personally, quite a relief. But I also think there is a point of wider significance here: that, for once, here is something that British society can be unambiguously positive about. After all, it is not exactly news to anybody living in this country that things are not going very well. Whilst people of different political persuasions will disagree as to exactly why this is, I think that everybody will nonetheless agree that, in general, shit is not good. So let me offer a brief ray of optimism: my guess is that 20 years ago, the experience of becoming disabled for the first time would’ve been very different to how it is now. I suspect that the default attitude of acceptance (indeed, of unremarkable normality) that I have so far encountered is a relatively recent social attitude shift – and unambiguously a positive change that we can collectively be proud of.

Admittedly, this is really just a guess. I haven't been disabled for very long, and so it is impossible for me to accurately judge as to whether and how much things have changed for the better. But I do wonder if there's a close analogy here with another marked social attitude shift that I definitely think I do have a good sense of: the amazing and widespread reduction in homophobia that I have witnessed in my own lifetime.

I’m not gay, but that doesn’t mean I have zero experience of homophobia. The simple reason for this being that homophobia was just utterly rampant when I was growing up. At my bog-standard Northern state school, to be labelled as homosexual was a death sentence in terms of the bullying, ostracization, and torment that anybody suspected of such was sure to receive. One lived in ambient caution, even if one was straight – and I can’t even imagine how awful it must have been for people who were actually gay. (It is absolutely no coincidence that I did not meet an openly gay man until I went to university, and he himself hadn’t come out until he got to university the year before I did.) It seems strange to think about it now, but well into my 20s, I – like pretty much every straight person in the Millennial bracket – was happy to use the word “gay” as a general term of disparagement. Of course, if accused of being homophobic I would have vigorously and sincerely denied it (I was a proud lefty in my youth, after all, so I knew that bigotry was bad). Indeed, around the age of 16 I had experimented with calling people out for using casually homophobic language. But I gave up quite quickly, both because it was a futile endeavour, and because it was ultimately just so much easier to speak like everybody else did. And speaking like everybody else involved an unthinking, but near constant, casual homophobia.

I know from experience of teaching Gen Z students that they find this effectively impossible to fathom or believe. To the vast majority of them, it’s just so obviously okay to be gay (and really not okay to be even ‘ironically’ homophobic) that they struggle to realise just how recent this change in default social attitudes is, even amongst socially-liberal demographics like university students. In an effort to get them to see this, I tell them about how The Sun newspaper in 1998 ran a headline seriously claiming that Britain was run by a “gay mafia”. And how in 2010 the same newspaper ran a poll asking readers whether gay people should be allowed to become cabinet ministers. The breakthrough in widespread social acceptance of gay rights, whilst still by no means perfect, is light years ahead of where it was when I was growing up.

My guess is that something similar is true with acceptance of disability. That whilst there is never a good time to be forced to use a wheelchair, this is probably the best in terms of how most others respond. Just as there are of course still sincere homophobic bigots, I’m sure there are still dickheads with backwards attitudes towards the disabled. But my sense is that these are now firmly in the minority. Ours is a society that has made leaps and bounds in terms of acceptance for people traditionally ostracised, treated with demeaning difference. Of course, there is always more that can be done. But it’s worth reflecting on how much has been done. Whilst there is plenty to be down about in the UK right now, this at least is, I think, a good exception.