Learning Disability

Is disability performative? As my chronic pain from spinal degeneration progresses, I’m learning that disability is an everyday process of negotiating with the world, and myself.

 

A couple of days ago I intended to post a happy Facebook status – a rare jewel of optimism in a pile of seething malcontent.

Two joyous things had occurred: not only had I managed to get back into my size 12 jeans (from having been to a size 16 back in the summer), but I successfully travelled on the top deck of the bus, which I haven’t done for almost a year due to crap mobility. With two herniated discs, trying to climb stairs on a moving vehicle is about as much fun as having your eyeballs grated, but it was a good day, and I tripped up and down with little problem.

I should take a moment to mention that herniated discs (and back pain in general) are a misunderstood condition. When people say they’ve ‘slipped a disc’ what they usually mean is that the disc is bulging and has momentarily prodded a nerve – its the pain equivalent of the dentist sticking that metal prong down your bad tooth so you leap out of the chair in pain. It’s fucking agony, and feels like the world is ending, but thankfully most bulging discs correct themselves in a couple of months, with physio and gentle movement. However, if you’re unlucky or just a physical wreck like me, the tough outer layer of the disc can split, letting the jelly-like centre poke through (think of discs as squished jelly babies) poking the nerve for ever and ever, giving you an incontinence-inducing shrieking agony at most inopportune moments. Although certain activities are bad for discs, usually the pain is brought on by something quite trivial, like turning round or picking up a penny. Lately the trigger for my evil jelly baby has been that most vigorous of movements – being asleep. I’ve gone to bed mobile and woken at 3am screaming like something from the Exorcist, my back in spasm and completely paralysed.

Jelly babies
They look so innocent.

 

I didn’t go ahead and post the status. The reason is a shitty one – if you’ve known me for a few years you may remember that an anonymous so-called friend tipped off the DWP that in their esteemed opinion, there was nothing wrong with me and I didn’t deserve a penny of their hard-earned taxes, despite the fact that I’d spent my life BD (Before Disability) paying my bloody taxes too and aren’t they supposed to be an insurance policy for when you need them and hey isn’t that why its CALLED NATIONAL INSURANCE THE CLUE IS IN THE NAME you utter fuckbucket. But because they’d seen me commit the unforgivable crime of smiling in a photo on Facebook, or perhaps leaving the house wearing makeup (because no one sees the months on end that I don’t wear makeup, dress, shower or brush my hair, let alone leave the house (actually that’s a lie, my live-in carer sees it but he tries to shield his eyes from the horror), this genius phoned the Grasser’s Benefits Hotline and claimed “There’s nothing wrong with her and she leads a full life”. I mean god forbid someone on benefits should lead a full life, in fact the less fulfilled and happy you are, the more deserving you are, and ideally you’d have £1 deducted from your benefit every time you laugh.

So fast forward to my interview with DWP and bye bye benefits.

So although all that happened three years ago, I didn’t post my happy status, because  it only takes one person (did I say person? I actually mean “cunt”) to see a nice happy status like this and think I’m an evil bus-stair-climbing money-grabbing benefits cheat.

Well, my anonymous grass can rest easy, because my bus-stair-climbing turned out to be a mere freakish twinkle of sunshine in a shitswamp of spinal disintegration, and by the end of yesterday I was in agony.

I was having a long-anticipated night out: firstly to the theatre to see a dramatisation of my favourite book, Oscar Wilde’s Picture of Dorian Gray, then on to a club to see some friends for an annual get together. I’d been quite anxious about the whole endeavour; since I stopped drinking my overall anxiety has reduced loads, but the thought of going out on the piss, without the element of ‘piss’ is pretty scary. I reckoned by going to the theatre beforehand, I wouldn’t be sitting around in a pub getting bloated on my fifth pint of soda water, and by the end of the play we could turn up to the club with it in full swing.

Things did not go to plan.

The play, the performers of which I’m not naming for reasons that will become obvious, was bloody awful. Hard to see how you could take a universally acknowledged work of utter genius and balls it up so spectacularly, but maybe it wasn’t entirely the performer’s fault. There was a mix-up with the start time, so we ended up getting there 45 minutes early, with nowhere to get a drink or even sit. The entire crew and front of house appeared to be the poshest people ever to have lived, which I KNOW is an unfair reason to hate people, but when you’re cold and in pain and Tabitha and Johann are shouting at you loudly and bossily it’s not the best start to the evening.

Things only worsened when we entered the theatre, only to find it wasn’t a theatre, it was a room, and the room was not even a room, it was (or appeared to be modelling itself upon) the interior of a fridge, complete with migraine inducing lights and sub zero air circulation, and the stage was not a stage but an area at the front of the fridge/room. By this point the quality of the performances were largely academic as the whole setup was so bloody uncomfortable that from curtain up (did I say curtain? How silly of me, of course this production had no need for such old fashioned fripperies, someone turned the big lights off)  I was counting down the minutes until the interval.

Now, this blog isn’t really supposed to be able me moaning about going to see a shit play, which is a shame as I do love a diversion, but I actually wanted to write about learning to be disabled, as illustrated by the events of these few days. So, I’d started this tale happily tripping up and down stairs, and headed out for a long awaited night of fun. But here comes the stick in the (mobility scooter) spokes.

As mentioned, the room was cold. Now this shouldn’t be a big deal – myself and the other audience members kept our coats on, which made it tolerable. As I also mentioned, there was no stage, meaning the whole room was on the flat. Shouldn’t be too much of a problem. Unless you have a squished jelly baby disc in your neck, which means that holding your head in that position is akin to having your face and neck trapped in a vice of pain.

By the time Flora announced the interval, not only had I given up on the second half of the play, but also on going to the club to see my mates. Still these two concerns were but nought because my main worry was how on earth to get home. Because my mobility had been generally good in the last week or so, I’d left my crutches at home. But the combination of frozen neck and sitting in crappy chairs for 90 mins meant I could hardly stand. Holding on to my devoted carer, I limped for an Uber but physically getting into the car and getting out at the other end were not fun, never mind wincing at every bump in the road. My much-anticipated first night out in six months ended in bed at 9pm with two tramadol and a Sherlock.

This +
this = a great night.

 

You might be wondering, how is disability learned? Surely it’s just a matter of adapting, and rolling with the (crap) punches? Well, yes and no. When the pain signals switch on their blue lights and do ninety along the highway of hell, you sure as fuck won’t be running any marathons. But disability isn’t as simple as always being one way or always being another. When you have good days, you make plans – it would be a grim old life if you simply took your worst base line of mental or physical anguish and planned the rest of your life accordingly (albeit that seems to be what the DWP would like you to do).But equally, it’s not really feasible if you plan your life as if you’ll always be your best. Especially when you have bipolar disorder – it’s a recipe for burning oneself out.  So learning to be disabled is a delicate tightrope of navigating how to ‘live’ without compromising your physical health through exhaustion, or your mental health through isolation/lack of activity.

As it happened, there was an especially unpleasant sting in the tail to my disastrous night out. I went to sleep in pretty severe neck pain, but said pain was manageable with lovely lovely narcotics. However, around 4am, my lower back decided to come out in sympathy, and for the next four hours I woke myself screaming in pain every ten minutes on the dot, because each time I fell asleep my back relaxed and the disc touched the nerve. (Last time this happened, my housemate insisted we call 111 and they sent us to the hospital, but I learned enough from that experience to know that they can’t do much beyond give you the drugs you’re already on).

So not a good night, all told.

The fallout from this particular episode is that only a month after I was last in hospital with my back pain, I was back again in the same situation – couldn’t move, couldn’t wash myself,couldn’t do much really. Upstairs on the bus fades into a distant memory.

I’d originally felt a fraud when I’d bought a pair of crutches off Amazon. I wondered if I was falsely claiming the badge of disability, when there must be so many others out there who had it so much worse than me. Now, however, I was blessing good old tax evading Amazon Prime and their one day delivery. If it hadn’t been for the crutches, I wouldn’t have been able to go to the toilet, which is pretty much the last bastion of self-reliance.

Things got worse. I was addicted to the tramadol I needed for the pain, and when I tried to kick them I had a week of Renton-style withdrawals. I could now get to the loo, but showering was quite literally a hurdle I couldn’t overcome. The pain had lessened, but any activity triggered it, so I was stuck between a rock and a hard place, knowing that the inactivity was causing my muscles to atrophy and result in more pain.

Plus, for my mental health, I needed to get out. I’m recovering from the worst bout of mental illness I’ve ever had the horror to experience (six days trapped trembling in a flat in Edinburgh too terrified to leave the house spring to mind, not to mention the suicide attempts). My carer has been tirelessly working to help me overcome my agoraphobia, but there’s still a large voice residing within me which, when faced with the option of going out, will forcibly say “NAH”. If I’m trapped in bed due to pain, I’m afraid the outside world will once more recede, and I’ll be left with nothing, except Words With Friends.

I asked my GP about mobility aids, but his view was that wheelchairs are for the lazy! Stiff upper lip! Once you start using a wheelchair your muscles will waste away and you’ll be left in a puddle like a gelatinous blob! (I paraphrase). The logic that my muscles were also wasting away while I was stuck in bed escaped him. I took an executive decision, and purchased what shall hereon in be named The Chariot.

So began my latest lesson in disability. Things I Have Learned so far include:

  • Men will still ogle you with crutches, but a wheelchair is a bridge too far.
  • People on buses will bestow you with patronising yet well-meaning regretful half-smiles. I don’t judge them, I’ve done it myself. Their face says: It’s a shame, and it IS a damn shame. I don’t mind or feel embarrassed about the chariot, any more than I feel embarrassed about my bipolar, they are part of me and I am largely great. But yes kind stranger, life would be easier with improved mobility.
  • At a time when one most needs taxis, they become scarce and valuable mythological beings which one must hunt for using a combination of apps and perching perilously close to the path of an oncoming vehicle. Accessible Ubers are few and far between and the ones in existence lie to you that they are seventeen minutes away then after seventeen minutes they are still sixteen minutes away. Only one in four black cabs stop. I try and meet the driver’s eye, willing him to read my mind which is screaming “You can start the meter before you put the ramp down mate, I’m happy to pay, I’m just cold and want to get home!”
  • Cold. Cold, cold cold. I’d always wondered why wheelchair users sported tartan blankets on their laps – it seemed strange to me. I don’t generally whip out a blanket when I take a trip to the theatre – so why did wheelchair users need one? Was it to disguise their slothful and likely stained jogging bottoms, the uniform of the undeserving and muscle wasting feckless poor, the latent Iain Duncan Smith that lurks within me wondered? No. Amazingly enough, I have discovered like the world’s most ignorant cunt, when one does not use one’s legs THEY GET COLD. I just spent two hours outside at a protest and yearned for a tartan blanket.

So here endeth my first lesson in disability. I expect there’ll be a lot more to come and I hope you will join me for this wild and crazy ride.

 

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