Embracing Adversity by Jonjo
So I’d like to share something with you first. Of course, I do a lot of advocacy for people with disabilities both inside and outside my role in Kent Union; and I am currently writing an article for a magazine called Disability Now. And while I was writing it, it occurred to me that, through all my campaigns and my writing etc, I’ve never actually sat down (no pun intended) to look at what the Dictionary or the Thesaurus actually says about the word Disabled. So this is what I did, I don’t know if you’re one of these families with a family dictionary? We are! Anyway, this is what I found:
Disabled (a) crippled, helpless, useless, mangled, maimed, wrecked, stalled, wounded, paralysed, mutilated, lame, handicapped, impotent, castrated, senile, decrepit, incapable, deprived See also; hurt, useless, weak Ant; strong, healthy, capable
Now I was going over this speech with a friend of mine and we were laughing about how ridiculous, absurd and potentially horrific this actually was, until my voice broke as we moved further down the list and I had to stop and collect myself. And I realised that I had had an actual deep emotional reaction to these words, to the sheer assault of what message these words conveyed. Of course, I know what you’re all thinking, this Thesaurus must be ancient; we certainly don’t think that way anymore. But actually this entry is from an Oxford Thesaurus printed in 1983. This seems unthinkable. For me, what this entry seems to be suggesting is that I, or someone like me, has absolutely nothing positive to offer this world at all when, in fact, today I’m encouraged, supported and even celebrated for the adventures and the achievements that my life has already afforded me. I’m at university, albeit struggling with a law degree, and I am here in front of you all today speaking out for disability. So as you can imagine, I immediately went in search of the 2012 online version expecting to find something radically different and more reflective of a views today. But unfortunately it’s not much better.
Disabled (a) blind, deaf, mute, lame, paralysed, quadriplegic, immobile, immobilised, ailing, diseased, ill, sick, unfit, unhealthy, unsound, unwell Near Ant; bouncing, chipper, healthy, fit, hearty, robust, sound, well, whole, wholesome Ant; able-bodied, nondisabled
I find the words under near Ant the most unsettling whole and wholesome.
So it’s not just about the words, it’s about what we believe about people when we use those words to describe them what do we believe when we name them? It’s about the values we put behind those words and how we use them to construct our actions. Our language directs how we think, how we view the world and how we view other people. In fact many ancient societies, such as the Greeks and the Romans, believed that to utter a curse verbally was so powerful, so strong, that it would literally call the words into existence. What reality do we want to call into existence, one where a person is limited, or maybe one where a person is empowered? But, if these are the only words we have come up with to describe those with disabilities then how can we expect people to think any differently to these negative connotations conveyed by these words already in place. How can we expect core ideologies to change without giving people the words to do this? By doing something as simple as naming someone disabled’, we might be constraining them, casting shadows on their power and potential. Wouldn’t we want to open doors for them instead?
I’m very lucky to have a close, loving family who do support and encourage me and to know others that have opened doors for me throughout my lifetime. One of my first experiences of this was back when I was very little and I used to be in and out of hospital literally on a daily basis. And I used to hate it. I used to cry, squeal and throw tantrums. I, as a seven year old boy, was already familiar with bartering with my mum in order to get out of doing this test or that test unsuccessfully, of course. And all this was until I met the first Doctor that I will remember for the rest of my life, he was my paediatric doctor for, you know, the first 18 years of my life. His name was Dr Norman Fabius Taylor and he was at the apex of poshness, with the shoes and the colourful bowties and the ‘how do you do’ and all that. And I remember one day, while I was being a pain about going it to do yet another MRI scan, he said to me; “you know what Jonjo, do you know how brave you are? Coming back here every day and putting up with me and all these people. I’ll make you a deal. If you can go through this MRI scan without causing any trouble, I’ll give you a hundred pounds”. Now, of course, this was obviously a cheap ploy adopted by Dr Taylor to get me to go through the MRI machine without wiggling and so forth. But apart from now having the prospect of being the richest seven year old on the ward, what he had effectively done for me is to reshape an awful set of experiences into something new and promising to strive for. And I have to wonder what level of impact his declaration of me being a brave young boy has shaped my own reflection of myself as perhaps the strong, independent, confident and outwardly spoken young man that I have become.
Now this is just one example of how people in authority, namely adults in this case, can ignite the powers of others, namely of children. But obviously in these previous centuries, or even decades you might say, our language is not allowing us to progress to the reality that we may actually want; in terms of the possibility of an individual to see themselves as capable. Our language simply hasn’t caught up with the changes in our society. Certainly in terms of medical progress, through laser surgery, titanium hip replacements, nerve stimulators and so on, individuals are now able to remedy or augment many limitations that nature have bestowed upon them and therefore become more in touch with their potential. Not to mention social networking platforms, such as facebook or twitter, which allow individuals to self-identify, to portray the identity that they have claimed for their own without limitations in the physicalworld. So perhaps technology is now revealing what has always been a truth that everyone has something special and powerful to offer our society regardless of how society perceives them and that the human ability to adapt is truly our greatest asset. To Paraphrase Darwin, it is neither the strongest, nor the most intelligent, it is those with the greatest ability to adapt that are the most likely to survive. The genesis of creation is through conflict. The human ability to survive and flourish is driven through the struggle of the human spirit through conflict. From conflict comes transformation. And perhaps, until we are tested, we don’t know what we are made of. This is what adversity gives us a sense of self, a sense of definition, a sense of power.
And this is really interesting because I’ve been asked a lot about adaptation and this phrase ‘overcoming adversity’. And I’ll tell you now that this phrase has never sat well with me. Implicit in this phrase of overcoming adversity is this idea that success and happiness is about emerging on the other side of a challenging experience, unscathed, unmarked and completely free from the experience. As if my successes in life have come about from some ability to avoid, sidestep or jump over various obstacles put in my way by my disability. But in fact, this isn’t true, we are changed, we are marked by these experiences, whether that’s physically, emotionally, mentally aren’t we all shaped in some way by our experiences? And I’m going to argue that this is a good thing. Adversity isn’t an obstacle that we need to work around in order to resume leading our normal lives it is a fundamental part of our lives. And this goes for both individuals with disabilities and those who do not. I tend to think of it as my shadow; sometimes I see a lot of it, sometimes I can see more light and the shadow gets smaller, but it is always there. Now certainly, I’m not trying to diminish the impact of a person’s struggle, there is adversity and challenge to life and it is all very real and relative to each person, but the question should never be whether or not you are going to meet adversity but how you are going to meet it. Our responsibility to each other as human beings is not to simply shelter people from adversity, but to prepare them to meet it well. We fail in this when we use language in ways and behave in ways that convince others that they are not equipped to adapt.
There is a distinction between the objective, medical fact that I have an anomaly in my genes that means I have problems with mobility and sight, and the subjective, society driven label of whether or not I am disabled. Honestly, the only disability that I have ever encountered in my life is society’s assumption that I can be described by those definitions. Perhaps this seemingly existing model we have of ‘what is broken in you and how do we fix it?’ is more disabling than the actual pathology. By not treating people in line with their wholeness, irrespective of their setbacks, by not acknowledging their potency, their power, we are creating another illness on top of whatever natural struggle they might be facing. We are effectively ranking someone’s worth to the collective. It is important that we try and see through this and into the range of human capability.
Most importantly, there is a partnership between these perceived deficiencies and our greatest creative and adaptive ability. It’s not about devaluing these difficult times as something we want to avoid or pretend is not happening, but rather to find these certain opportunities wrapped up in adversity.
So maybe, the idea I’m trying to convey here is not to think about overcoming adversity, but to try and open ourselves up to it and embracing it. In this hypereal world full of new media and superficial stereotyping the idea seems that to be happy is to be perfect and flawless. When, in fact, when you think about it, this couldn’t be as far from the true human nature if it tried. So perhaps if we see adversity as natural, consistent and useful, we can become less burdened by the presence of it.
We can re-imagine adversity as something other than troubled times, maybe we can just see it as change? Adversity is just change that we haven’t adapted to yet. I think the greatest adversity we have created for ourselves is this idea of normalcy honestly, who’s normal? There’s no normal, there may be common, there may be typical, but no normal. And would you really want to meet that poor, beige person if they existed? Really?
If we can change these core ideologies from one of normalcy to one of possibility, potency and achievability, we can release the power of so many more individuals hiding in the shadows and invite them to engage their rare and valuable abilities with the collective.
So, I hope you don’t mind, but I’ve taken the liberty of writing my own definition of disabled’.
Disabled a spirit that has been crushed, doesn’t have hope, doesn’t see beauty, it no longer has our natural childlike curiosity and our ability to imagine. Ant to make possible
If instead, we can bolster hope, allow people to see beauty in themselves and others, to be curious and imaginative, then we are truly using our power well. When a spirit has these qualities, we are able to create new realities and new horizons for everyone.
I’d like to finish with a poem by W.B. Yeats, I know it’s a cliche, but it is still one I’ve always loved:
HAD I the heavens’ embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.
Every day we tread on the dreams of those of us perhaps more vulnerable and less able to see through their struggle. So tread carefully.
Speech originally delivered at Kent Students Union’s Disabled History Month 2012 by Jonjo Brady