I’ve not blogged in ages, 2017 has been a tricky year since my dad passed unexpectedly in December and though I do have a few blog ideas in the pipeline this topic has been bubbling about in my brain for a while and it seemed fitting to post on the anniversary of my accident – 27 years this year – whoop, whoop to me! I appreciate that for many people it might seem odd to celebrate a date on which an accident left me paralysed but in truth the alternative could have been much worse, it’s a celebration of survival.
This time of year tends to be a period of reflection for me, looking back over life since my accident (a few other anniversary blogs in the archives), I’ve realised in recent years that I have spent a lot of energy making out that my life as a paraplegic is so much easier than it actually is, a mind set I developed very soon after my accident, a coping mechanism for myself but also a very effective way of swerving people’s sympathy, I’m not good at dealing with sympathy, it makes me feel claustrophobic, and has the opposite of the intended effect, it makes issues seem so big as to be insurmountable; by minimising things I could swerve the icky sympathy and convince myself that paralysis was no biggie.
I minimised so many things, so much rejection, so many complications, but in minimising them I was also unconsciously minimising myself, my own achievements and accomplishments; I’ll admit I can seem very confident but I actually have rather low self esteem, I don’t feel like I’ve achieved nearly enough and I play down everything that I do and I now suspect the two may be intertwined. In minimising my injury I minimised me.
I was a teenager, I didn’t want to be different, I didn’t want to be forgotten, I didn’t want to be thought of as an inconvenience, a burden, needy, dependent, weird, ugly, unsexy, boring, dull, a problem, a medical disorder. I didn’t want to be left out or excluded, I wanted to be included. I didn’t want to make a fuss, (ok, occasionally I do like a massive fuss but there’s a time and a place) I developed what appeared to be a teflon skin, it was necessary in order to seemingly deflect with whatever inappropriate or hurtful comments strangers or sometimes even friends might make about my disability.
Here’s an example of the kind of bullshit that regularly comes my way; strangers I’ve met in bars think it’s perfectly acceptable to ask me incredibly personal questions, if I can have sex, can I have children and can I orgasm? (In case you’re now wondering the same thing, yes, yes and yes.)
While I’m raising the topic of questions, let me just paint this scenario for you, guaranteed to happen on most nights out. I’m having a great time with friends, chatting to new people when curious Cathy or eager Eddie wants to ask me a question…
To be clear, I’m prepared to answer the question, it doesn’t upset me at all but ask yourself, are you prepared for the answer because let’s be honest, it’s unlikely to be a happy story is it?
I’ve no qualms talking about my accident but f*ck me, timing people, it’s a total buzz kill in the middle of a fun night out and you’re likely to get all over emotional….
You ask, I answer, you go silent, your arse clenches, you maybe whisper ‘fuck’ or ‘Jesus’, the temperature around us drops about 10 degrees and you say how awful it is, I say ‘nah it’s fine, it was years ago, hey shit happens’ anything to restore the mood to what it was 30 seconds ago and use my energy to undo the tension you created. You may also be crouching down at this point because you’re keen to be at my eye level and boy are your ham strings feeling the burn, but now you’re a bit worried about offending me by standing up and complaining that your legs hurt. So I say ‘you don’t have to crouch down there’, yup me making you feel better again. You tell me about an injury or illness you suffered that left you paralysed for 2 weeks so you know how it feels. Excuse me? 2 weeks? Wow, yeah you totally get it, those 2 weeks must have been so similar to twenty seven years. Then, if I’m really lucky you’ll let me know that medical science is making great strides, um yeah but not for a 27 year old spinal cord injury. Again, there I go minimising, minimising my experience, this time to make you feel better.
There is also the example of the instances when I minimised to make myself feel better, usually during an encounter with the delightful f*ckwits who respond by telling my that I’m an inspiration because if it had happened to them it would be so unbearable that they would probably kill themselves. I used to assure these arseholes that it really wasn’t all that bad, so much more to life, etc, etc. All of which is completely true but what angers me is that I continued to give them my time and energy, if you think so little of life that you couldn’t cope with life sitting down then maybe you need to reassess your priorities; whatever, it’s your issue, not mine and I shan’t be expending any more energy trying to convince you otherwise.
I cannot believe how many times have responded with ‘shit happens’, to ‘it could be worse’ playing down my life experience like it’s no big deal. Problem was over the years I believed it too. I thought of it as a blip, a curveball, a detour. Years before social media i was effectively filtering my experience, photoshopping some things out, flaunting the good stuff, (yes despite the nature of this post my life has largely been very good stuff).
I never saw it as a life changing accident that changed the course of my life. That was far too big to contemplate. It was so much easier to fit in, always smile, never complain, never explain, go to all sorts of lengths to be easy, breezy cover girl, make sure everyone around me didn’t have to think about it more than necessary. Then I didn’t need to think about the serious injury that happened to me, that changed my life, the life of that young, happy 14 year old girl girl. A child. A child who became an adult over night. It was so much easier to diminish its impact than feel it, to feel for the loss of potential of that teenage girl. Her potential. My potential.
I hope this isn’t coming across as angry or self pitying disabled woman with a rotting chip on her exceedingly muscular shoulders, that’s not where I’m coming from, I don’t carry this around like a cross on my back, I just thought it was time to ‘lift the veil’ or turn the filter off. It was only after I broke my leg in 2015 and ended up on bed rest again that I truly began to acknowledge what a huge thing had happened to me 25 years earlier.
As much as I try not to let my disability dictate my life it does inform some of my decisions and life choices. I fought so hard to be included but I’ve also had to accept there have been many times in life when my disability has made that impossible and I have to accept exclusion. I’ve very rarely been in friend’s homes as so many are upstairs or downstairs, it could just be they think I’m an unsocial oddball and no one wants me over but I hope it’s the stairs. Events that I have missed because there no wheelchair access and it wasn’t feasible to navigate the stairs, birthday or engagement parties where I just couldn’t face the slog upstairs or being dependent on the kindness of bouncers so I feigned illness or conflicting plans. I love a rooftop view but I very rarely get to go up on rooftops whether in bars, hotels or friend’s houses, there is no access, though huge props to the chauffeur in Paris who carried me to the very top of the Eiffel Tower many years ago. And a big bonjour to the 3 exceedingly fit firemen who carried me up a moving escalator out of the Louvre last weekend.
Here are a few questions for you to ponder…
How many wheelchair users do you see on your rush hour commute? Think about it, you’re on the packed 7.14am to Waterloo or Liverpool St, where’s the wheelchair squeezing in?
How many disabled people work in your organisation?
How many disabled friends do you have in your social circle (aside from me)?
How many disabled children are in your child’s school or play groups? Have you invited them over for a play date or a birthday party?
You’re away with friends at a luxury hotel or a spa, how many times have you seen a pool hoist?
Independent retailers, coffee shops, restaurants, bars, I want to support you but is your premises accessible, you support me and I’ll support you.
Is your feminist project inclusive and considerate of women with disabilities?
How often have you parked in a disabled bay or used a disabled loo under the rationale that you’ll only be a few minutes? The few minutes that I really need it before a meeting, a job interview, an audition, a flight, a train. FFS.
How many on screen portrayals of disabled people have you seen that you believe are an accurate representation of living with a disability.
Can you name 5 famous people with a disability who are not Paralympic athletes?
How many disabled people have you seen at your local gym, yoga or pilates class?
Have you considered what it’s like to have difficulty having privacy, struggling to find solitude with nature in a beautiful place because it’s so damn inaccessible you need help to get there but then can’t just chill with your own thoughts because you have a companion in tow to heave your arse up a hill.
No matter what your answers are I’m not being judgmental I just wanted to give a pause for thought, to consider inclusion vs exclusion.
I used to book dinners and parties in utterly inaccessible venues because they were hip or cool (eurgh) but haven’t for some time, your business is not getting my money if you can’t squeeze in a disabled toilet and keep it clear. (A big thanks to the companies I’ve worked for who have supported this when organising team events.) I would get carried up and down stairs to be at all the best parties in fear of missing out but no more, if it’s not accessible there better be magic money tree at the top of those stairs. That or Liam Neeson and Idris Elba waiting for me with an ice cold margarita.
When I moved to LA I had to work hard at making new friends, that’s no mean feat as an adult, to find your clique, there’s a lot of trial and error, lots of forcing yourself out to meet new people, now imagine doing it all in a wheelchair, explaining yourself, being chill and fun, answering all the wheelchair questions again, the upside being that at least most places were accessible so I didn’t have to call and check before hand. Yes, that’s what I do, you invite me somewhere and I research it, I use Google Maps to zoom in on streets so I can see where the dipped kerbs are, where are the nearest parking spaces, can I push myself that distance or is it easier to uber? (No, I don’t do tubes and buses.)
Long before we had the internet and Google I used to carry a page ripped from Time Out in my purse, it was the page which listed the phone numbers of most of the bars and clubs in London, so if on a night out with friends I could masquerade party girl spontaneity by calling said bars or clubs in advance and give them a heads up that I was heading down in my chair. I decided to take this approach after so many occasions being turned away at the door for being a fire hazard, yep, seriously, people were smoking inside and their fire exits were probably all locked with a chain and padlock but I was the fire hazard. It was after too many nights of getting dressed up and rejected that I developed the ‘call first’ approach. The rejection and exclusion takes its toll, it is so much nicer to arrive at a bar, be greeted by a smiling bouncer who invites you to skip the queue and ushers you inside.
We all want to be welcomed, to be invited in, to be included. How would you feel to be excluded from your life as you know it?
If you had a life changing accident tomorrow would you be able to return to your home and your job, is your office accessible, could you get your own coffee in your favourite coffee bar, is it a flat entrance, could you get your own drink in your local bar. Would you be able to access all the local eateries to buy your own lunch near work? How many kerbs do you think you could manoeuvre your chair around, are you arms strong enough to life the weight of your body? Would you able to continue to date someone who lives on the 6th floor of a building with no elevator?
I’ve done such a great job of making it look easy that most of you have said at one time or another that you forget that I have a disability, I used to think of that as a good thing, a success on my part but now I see that maybe it’s not such a good thing, maybe it was misleading. At college, at university, at new jobs, I always work hard to put everyone else at ease, so they’ll relax around my disability and we can focus on building relationships and get on with the work. I’ve always loved the interaction with children when I visit schools to talk about disability, their honesty and innocent curiosity, it feels good to educate them about disability but I think I may have dropped the ball in educating adults honestly. I’m not looking for sympathy here I just think I owe to myself to speak the truth to honour my story and say that I have overcome a ‘massive thing’ sustained at a very young age, but in order to do that I have to admit it and accept that it was a huge trauma and damn it, it’s really f*cking hard to do. I’m hoping that in acknowledging it publicly it will help me adjust to a new way of thinking. No more minimising. As my mama always says, “own it.”