Some nights… well, okay … most nights, instead of writing (or as I write) I end up having in-depth conversations with friends over Facebook messenger. Being somewhat of a social recluse when I’m in full-scale writing mode, I think of it as maintaining an important connection to the outside world. We discuss many things, sometimes work related, a bit of banter about upcoming holidays, things like that. And I wanted to share with you one of the things many of us seem to have in common:
We’re bloody tired.
When you’re an activist like many of my friends are, you don’t want to be seen as weak. You’ve spent your entire life fighting for equal rights and opportunities. The last thing you want is to be perceived as less than or worse still, as a moany crip. You know what I mean: someone who brings all of their struggles in life back to the fact that they have a disability or impairment. Someone who’s perceived to do nothing but complain.
I know many people with disabilities who have great careers, lovely families (like mine), are able to drive, maintain a home and, if they’re lucky, a career and maybe even a social life. This is merely a dream for many. Yet in conversation with my friends on a one-to-one basis, they share their deepest fears. Are they losing the physical ability to do the things they love, or will they do so in the future? Will they be able to live independently if Personal Assistance is not available? Will they be perceived to be lazy or passive if they can’t give everything they have, 100% of the time? If they stop fighting, will they lose everything?
I have written before about how I spent most of my life trying to fit in. I remember particularly my Leaving Certificate, and how, even if it killed me, I would get enough points to study in Trinity. I remember the lunacy of staying up until one in the morning, anxious to get no less than 80% in all my exams and essays. I knew I was capable of it, but I nearly paid the price of my mental sanity. But I was so determined not to be defined by my disability that in many ways I rejected it, refusing to believe that I was impaired in any way.
For years now I thought I have been a firm believer in the social model of disability, that it’s society that disables us. And I do believe this: a lack of available housing, accessible transport and personal assistance constantly threatens to deter us from achieving our true potential. However, the reality remains that until these issues are tackled in their entirety, we must try our best to adapt within a society that won’t adapt to our needs. It might mean taking up employment in an inaccessible building, or forgoing the opportunity of job promotions because we can’t afford to lose our medical cards. Maybe it means highlighting our weaknesses and shortcomings so that we can access vital services. Maybe it means languishing in a day centre so that we don’t have to face the deafening echoes of silence at home in our childhood bedrooms or a residential institution.
Sometimes it might mean plastering on a smile so that those around us don’t realise the amount of pain we are in, how exhausted we are or how much effort it took for us to get out of bed that very morning. Because giving any indication of how impairment affects us is a major sign of weakness, right? Isn’t it akin to saying, ‘well, I’m not really equal, and I don’t believe really that we live in a society that disables us? My impairment is my problem?’
No, people – no, this is not what this means. At. All!
The problem is that we live in a society that, when it comes to disability at least, we are brainwashed to believe that our shortcomings are somehow our own fault. For example, prior to being pregnant with Alison, I never used a rollator. In my mind, I never needed one but in reality I was probably constantly falling over. Two days after giving birth, after spending three weeks in a manual wheelchair, I was determined to start walking again, using the rollator at first and then eventually walking on my own as I did before I was pregnant. This was my ultimate goal and it would make me somehow less of a person, less of a mother even, if I didn’t meet this goal. Where was I getting these ridiculous ideas? Mirrored by a society with their stereotypical ideas of what a ‘proper’ or ‘strong’ mother should be? Incidentally, it’s been six years and I never did get to a place where I felt confident walking without the rollator. The medical model of my brain is saying ‘oh, it’s because you didn’t do your physio, you didn’t try hard enough.’ In contrast, the social model tells me that I’ll never be any good to anyone if I’m exhausted trying to do things that in reality don’t really bloody matter!
That’s why, when Alison was two-and-a-half, I decided to get an electric wheelchair. I wanted to be able to bring her for walks in the park, down the canal, walk her to school like a proper mummy. Yet, although I know it’s true that the wheelchair gives me so much more independence, social conditioning sometimes makes me doubt my own judgement. It’s been drummed into me that physical ability, including the ability to walk (which many don’t have) is something which must be used at all times. On the other hand, if I didn’t have it, I would probably not be able to write this blog, have the energy to spend on playing with my daughter or to sit on the committees that I sit on now.
I guess what I’m saying, especially to my friends – those who I’ve spoken to about this at length – is that we need to stop measuring our worth and instead start challenging the ableist society we live in. Can’t hold down a full-time job, or are you struggling to keep up in education? Can’t seem to source a suitable place to live? Perhaps it’s because you’re competing without reasonable accommodations, which isn’t really a level playing field. I’m not saying play the ‘disability card’ and roll over and do nothing with your life, but of course you’re tired. You’ve been trying to claim your rightful place in society for a long time.
So take stock, take some rest and put the fighting gear back on, because the battle isn’t over yet. And take solace in the fact that you are definitely not fighting alone.
PS I apologise for the crappy quality of writing in this blog, but guess what? I’m tired!