When you look at me, you’d have no idea that I was anything but a relatively young, financially stable, healthy male (even if some who see me in public think I am a "Islamic" terrorist but that's another story for another day). If you talked to me you might think I was intelligent but hardheaded. You might think it rude of me to be so blunt (I've been called "challenging") or not get up for a woman or child on the bus. After all, you don't really know that much about me if you've never met me before so all you have to go on are your expectations, hopes, dreams, fears, insecurities and the norms we have been taught.
The truth is that in pretty much all aspects of my life, I don’t fit the stereotype or norms. I’m Jewish and religious but I don't wear a skullcap and I'm non-Zionist, I’m not typically "masculine", I’m a pacifist and also an anarchist, I don’t believe in answering the question "Where are you from?", I don’t eat meat, poultry or shellfish but I do eat certain fish. I’m from a middle class family, I have a university education and I’ve travelled the world over, but I’ve also been homeless more than once. Those are just some of the parts of myself where labels based on groups I belong to by default don’t fit quite right.
"Why are you telling me all of this?"
Well, I’ve been looking for something to do with my time and talents ever since the clinic coordinator at the rehabilitation centre I attending as an outpatient told me I had to accept that I can never really expect to compete on the job market ever again. That was almost 3 years ago and I'm still haven't fully accepted it. It’s been really hard to. After all, I am healthy, intelligent and relatively young and I have a lot to offer the world, right? I shouldn't just sit at home binge watching shows all day and living off the government. Yet here we are. Let me tell you, it's been frustrating! Not only because of everyone's "helpful" comments about ignoring the "experts" and willing myself back into gainful employment but because I am bored out of my mind and because I have a lot of life goals that I will probably have to give up on. I know I have talents and experience and knowledge but I just don't know how to offer them in a way that people want to employ them and nothing I've tried has worked.
That is not to say that I am not grateful for my life exactly as it is. Most days, I love having the perspective and experiences that would be impossible without the invisible but very real limitations I deal with every day. One which is particularly important to me is the ability to stand up for welfare recipients in Quebec, who don’t usually stand up for themselves because of the stigma associated to welfare, by suing the Quebec government for human rights violations.
"So what are you going to do about it? And why should I care?"
Well, last week I was in New York as part of HugTrain’s 9th annual HugTour and I met up with my friend Ezra Butler. I was telling him about how I was frustrated and bored because of the limitations of my invisible but very real limitations and he suggested that I use my voice to stand up for people with invisible disabilities the same way I was speaking up for people on welfare. He said it was a far easier message to grasp than HugTrain’s and would be easier to mobilise people and get their support. Although I could see where he was going, I admit that I hesitated. I don’t want to see myself as limited and boxed in and I don’t want to be defined by my limitations nor do I think focusing on the problem is a good way to solve it. I am still struggling, as I am sure many of us do, with expectations that our families, friends and society put on us about what it means to be “successful”, “accomplished” and “worthy” so I haven’t figured out how to put all of this into action without taking the focus away from how these are all issues we deal with, invisible disabilities or not. That said, while he was offering this solution to my existential crisis, he made a very good point:
Getting people to empathise with the challenges of having an invisible disability may help them become more compassionate with themselves and with other people.
That, to me, is a very important goal. It is undeniable that we need far more compassion in the world. For ourselves and for everyone else. Not because compassion means ignoring bad behaviour (it doesn’t) but because compassion frees us from being dragged down into anger and outrage over the actions of others when they don’t meet our expectations and helps us better understand why we are reacting the way we do and, therefore, grow as people. If we had compassion for ourselves and others we might stop expecting perfection and invulnerability and we might be allowed to breathe a bit easier and not jump right into attack mode on ourselves and others when we see even the slightest bit of vulnerability. Yes, that scary word again! Without vulnerability, we cannot build healthy relationships and without relationships we cannot build healthy communities or the world. I mean, look around you. We're all trying to pretend we've got it all figured out but the minute we get rejected or proven wrong, oh man does it hurt! It’s true that the world can be harsh but that doesn’t mean we have to be. In fact, it can only ever stop being harsh if we stop using its harshness to justify withholding compassion from ourselves and others.
"Why can't you just work like everyone else?"
Well, over the years I’ve had a few concussions (please don’t ask for details, it makes me feel like you’re evaluating the validity of my disabilities and/or treating my life like a TV show for your enjoyment) and they have added up. Like most people, I did not know how important aftercare was for concussions and I thought I should stop being a "wuss" and walk it off but concussions are actually serious business and they don’t ever heal. That means they add up and mine have resulted in some serious lasting but invisible effects. I can't even look up at a skyscraper without getting dizzy! Sadly, because of the whole "walk it off’ attitude towards concussions that has been prevalent since pretty much the beginning of time, there is very little available in the way of treatment for concussions today. We have seen a shift recently due mainly to the stories about NFL players (finally an upside to pro sports!) and they just found a way to detect the damage done by concussions in a living person which was previously only possible after death but we’re long ways away from a cure.
"You look fine to me!"
Thanks, that’s very kind of you. Or is it just your way of saying you don’t think I "deserve" any special consideration and should just stop complaining because everyone has their own challenges? Many people I know how have invisible limitations face this kind of response. Some people will even go as far as to tell me that if someone without limbs or who are lacking sight or hearing can work then I should be able to find a job too. Well, it’s not quite that simple. (Nor is the be all and end all of societal contribution having a job for the sake of having a job.) For one thing, not that I need to justify myself but in hopes of garnering better understanding, I never know how I will be feeling on any given day nor how long I can last. It’s not really something employers can count on and it didn’t really help me compete on the job market. Even writing this is difficult and draining but I’m doing it because it’s important.
In addition to all the physical issues my concussions have caused, it has brought my autism to the fore. I have always suspected that I was on the autism spectrum but I was born way before there was an understanding that autism was a spectrum and that many was a diagnosis and my parents were told I would grow out of it because most people on the spectrum who were able to communicate and interact with a degree of "normalcy" find shortcuts and coping mechanisms to get around the limitations posed by autism and therefore appear to have grow out of it. It's incredibly difficult to get a diagnosis of autism as an adult, at least here in Canada, so I am still reticent to declare myself as on the spectrum (No, not "everybody is on the spectrum") but more because I'm tired of having to defend myself than because I know it to be true.
But it’s not just concussions, autism and something that I have been dealing with that is usually explained as chronic fatigue syndrome that I carry around. Yes, chronic fatigue. Regardless of what Ricky Gervais or anyone else will tell you, it’s a real condition with no known cure. In fact, none of my health issues have any kind of solution that is recognised as a cure or treatment by the allopathic medical community or the government so I can’t access it with an income of only $900 per month.
“Get over it!”
I get that everyone has challenges and that it isn’t fair that life is so hard, even if we’re trained to pretend it isn’t and expect that no one else will complain about their stuff because vulnerability makes everyone uncomfortable, right? But life *is* hard and it’s ok to say so and I have my friend Sam Parrotto to thank for that realisation. I was lucky to meet up with her last week in Philadelphia, also during the HugTour. (Thank you Julie Bourbonnais and Gigi Peterkin!) Yes, life is hard and we should celebrate the effort we make and not chastise ourselves when we need a break. Sure, a lot of how hard life is how hard we make it but we shouldn't deny that even if we didn't overthink everything and just got on with it, life still is very demanding. If it was easy and not demanding, we wouldn't ever need to sleep, right? Just as importantly, we definitely shouldn’t go after people who have the courage to admit that they’re not perfect and are having a hard time.Even if they don’t say the words and all you have to go on are their less than “appropriate” actions. Because not a single one of us is perfect and nor do any of us have a perfect life. I’m not saying excuse bad behaviour. I’m saying don’t go after the person. Like, Ian Maclaren, (and not Plato), said
“Let us be kind, one to another, for most of us are fighting a hard battle.”
I feel I must make myself very clear: I am not just trying to win you over with my "sob story" about dealing with invisible health issues. My goal is to explain to you how each and everyone of us has invisible limitations. I am not my invisible disabilities and they are not the only things that get in the way of me acting the way everyone else would expect someone who has all the privileges I have to act. Like everyone else, I also carry around trauma and life experiences that have shaped my conscious and unconscious choices and colour my behaviour and reactions. Things that are invisible to the naked eye. Things people we encounter on a bus or subway, or other public space will never see and, for the most part, will never ever allow for when they form their judgments of us. But, if we are to make this a world we wish to inhabit, these are the things we must allow for. Assuming the worst in people not only sucks the joy out of life but makes this a very harsh world indeed.
So, as Ezra suggested, here’s a question for you: What is it that no one knows about you just from looking at you that you wish they did so that you could be free from their expectations about your behaviour? That seems to be a great starting point for a discussion about compassion.