Monthly Archives: March 2016

Hidden disability and its losses

When I look at the way disabled people are being persecuted to their deaths in my own exceptionally wealthy country, I wonder if disability is getting left out of our discussions on social justice. When we reel off our well rehearsed lists of intersecting oppressions, disability is often missing. This has led me to reflect on the impact of my own disability, and how much I discount it (and hide it).

Here’s my list, which feels pretty scary to put out there – ME/CFS, depression, autism, ADD, attachment disorder, PTSD, dissociation. Some of these have been medically diagnosed, and some realised through non-diagnostic psychological therapy. I may disagree with the construction of some of these labels, I certainly oppose any label with “disorder” in it, but I still feel their weight.

Photo0475I often spend time reflecting how lucky I am. I think it’s important, reflecting on privilege, being aware of your advantages. I grew up middle class, well educated. I was white. But home was not remotely safe, and school was where I was bullied for being different – traumatised, aspie/ADD, trans, and poorer, more neglected and scruffier than the other kids in my posh school.

Life continued with its benefits and losses. Family trauma led to me leaving home at 17 and becoming homeless, living on the breadline well into my 20s and becoming dependent on substances to cope. My good education meant that I was eventually able to get myself to university as a mature student, where I learned a lot and had access to free therapy. My poor health meant I was unable to complete the degree, and to this day (nearly 2 decades later) have never earned enough to start paying back my student loans. But having been to university still broadened my horizons.

I have ended up with a complicated relationship with privilege, where I have often discounted my own struggles because there are always people much worse off. I’m sort-of posh and sort-of university educated, but my mental and physical health has weighed pretty heavily in counterbalance to those privileges. It has created a wealth gap that we all just take for granted. We expect disabled people to have to struggle financially.

Hidden disability is ignored and dismissed and often I’ve struggled to get people to believe it’s there. Because it is inextricably bound up with trauma, it’s also too easy for people to say it’s “all in the mind”. Well, some of it really is neurological, but saying “all in the mind” makes it sound like a choice, and then people don’t have to take it into account. People are often quick to assume you’re shirking or lazy or melodramatic or manipulative, because they simply cannot see the pain or difficulty you’re having, and they require a proof that does not exist.

It doesn’t help that like most army brats, I was raised to be a brave little soldier, and showing my vulnerability is no easy task.

I have rarely been able to work full time, or managed to continue in employment without chunks of time off to recuperate. I’m in one of those off-times just now. Being on the cusp of disability, I’ve been able to claim sickness benefits for short periods, but always under duress to get back on my feet. The walking wounded, I always feel thankful for how relatively unscathed I am, but at the same time sometimes I just want someone to let me ride on the stretcher for a bit.

The underlying problem, I am beginning to realise, is that our current culture trains us to see ourselves, and our problems, in competition with each other. Some folks take the “my problem is bigger” approach: “Why should I care about your broken ankle when I have a broken leg?” “I bet it’s not broken really, it’s just twisted” . . . “and anyway, mine was a really, really bad break”. But as a counsellor, I actually see far more of the flipside of this – people discounting even the most horrendous of their own problems because there is always, inevitably, somebody worse off. This is what I tend to be guilty of. In doing this, people are often avoiding the discomfort of being vulnerable. It’s called not dealing with your own shit, and it isn’t as virtuous as it appears. But it’s entirely understandable – we believe somehow we can make a bargain with our minds to minimise our pain through a process of denial, as if “positivity” is all about pretending.

[Image: quotation reading "That quote, 'the only disability in life is a bad attitude', the reason that's bullshit is ... No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into braille. Stella Young on how 'inspiration porn' gets it wrong"

So, here’s the thing. I am a very lucky person, and I know that. I grew up with enough to eat, with the enormous benefit of being white. With praise for my “masculine” qualities, with intelligence, and the ability to articulate myself, and the benefit of a good education. I am disabled but I am also brimming with able privilege compared to many.

But I increasingly suspect that in order to live in a compassionate world, we need to learn to give due consideration to every stubbed toe – we should learn to stop measuring other’s distress against our own and be able to wholeheartedly empathise with how it feels to suffer migraines and bad backs and brain fog and depression and eczema and IBS and asthma and ingrown toenails and griefs and traumas both large and small. I will support you to grieve for your broken iPhone and not compare that to my lost family, because no two problems are ever comparable, and all feelings matter. Being able to tune in to each others differing experiences is never wasted.

I am slowly learning not to dismiss my own pain and trauma in the face of the overwhelming suffering and oppression I see around me. It makes me a more compassionate person when I learn to offer myself that same compassion. Lately, my physical health and depression have been so bad there have been lots of days when I have wondered if I can carry on working or even functioning. There are days when I have cried out for a carer, knowing full well there really is nobody out there better off who can swoop down and lift my burden off me. I tell myself I have to be strong, but the reality is being strong is exactly what gets us into this pickle.

We are none of us strong, we are all of us vulnerable, and often there are difficulties we don’t see in the faces of those who we set up as “the lucky ones”. I will continue to own my privilege, as we all must, but I also need to learn to own my vulnerabilities, and I am increasingly realising the importance of that. Compassion is not a commodity, it isn’t in short supply, or more valuable if we ration it. Capitalist, austerity-based models of caring do not fit our hearts. We can afford to be as generous as we possibly can be towards our own, and each other’s, suffering.

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