Disability and Difference

18 months have passed since I first began working with people with disabilities. It has been a varied experience, sometimes vacillating between joy and frustration, confidence and uncertainty. It’s true to say, I think, that I have grown throughout my experiences, and part of that growth concerns my burgeoning reflections upon the way my work implicitly challenges the manner in which I view disability. It happens constantly, and those challenges are diverse. Thus, any attempt at crystallization is bound to flatten out differences, and smooth over the rough edges of (as yet) incomplete thoughts on the subject. Still, I want to share what I have learned so far, in the hope that our perspectives on disability and “normalcy” might be transformed. At the very least, I trust that what follows will stimulate fruitful thinking within those for whom this field is a foreign land.

As part of this project, I want to focus on three key images: faithfulness, patience and humility. They are emphatically informed by my experiences during my time in the industry, and, what’s more, neatly dovetail with important aspects of Christian theology. Those reading this blog who are Christians will recognize the three images I have listed as qualities that are deeply interwoven into an authentic life of Christ-following discipleship. As such, the present essay can be read on more than one level: first, as a series of reflections on the upending of assumptions as a result of working alongside people with disabilities; and, second, as a glimpse* of the relationship between theological contemplation and a fresh understanding of disability.

Let me begin with the first image I listed above, faithfulness. This came to mind as I was supporting a gentleman who is visually impaired, and has a mild intellectual disability. He had invited me into his room at home (which he shares with two other people), so that I could help him read some mail he’d recently received. As I entered the room, I noticed a small plaque on the wall. It was in recognition of the gentleman’s 45 years of dedicated service at the same organisation at which he still works. I was immediately struck by the man’s length of service. Every week day since 1965 (the plaque was from 2010), this gentleman had been rising at 5.00am in order to ready himself for work at the same place of business. By the time I was born, he’d been working there for 19 years. My relative youth put things into perspective, and I was deeply impressed by the gentleman’s daily consistency. Moreover, I was made to feel a little inadequate: I had barely entered the workforce, and this man, despite his disability, had been devoted to his workplace for more than a generation. He had been eminently faithful to the organisation, creating a life marked by reliability, conscientiousness and industry.

What the above gentleman taught me was that having a disability can actually (in this case, at least) open one up to the possibility of a long-standing commitment to something worthwhile. He may not have had the same opportunities as others to better himself. He may have been denied the chance to pursue gifts and ambitions. But, in giving himself to the same job, the same organisation, for two-thirds of his life, this gentleman has evidently been able to develop a deeply respected – but frequently eschewed – virtue. His disability has, as far as I can see, allowed him to acquire a habit of mind and body that is so deeply lacking in modern life. By combining a high estimation for the dignity of work with a staunch, untempered commitment, this gentleman has developed a mature – and enviable – sense of fidelity. What might be seen as a weakness has actually been transformed into a strong, reliable steadfastness, running counter to, and deeply challenging, prevailing values. More of that anon.

So much for faithfulness. What about the next image, patience? It could be said that the above gentleman exhibited this quality as well. However, this image was conjured in the course of working with another man. He has a significant intellectual disability, which means that a task that might take me a few moments may take him five minutes. He is learning skills that I simply take for granted, and does so at a pace that, to me at least, seems quite slow.

At first, I must admit to struggling with the amount of time taken to complete what seemed to me basic activities. To my shame, I would sometimes hold onto a silent frustration. As time went on, though, I learned to become more patient, as I observed and supported this man whilst he slowly and methodically got himself changed for a session at the gym, or retrieved some money to pay for a drink. Patience, I realized, was what I lacked. I needed to be less concerned about moving on to the next task, and more interested in the moment-by-moment inhabitation of time and place. Indeed, it’s true that I had to learn to be patient as I learned patience: a meta-process that seemed to run alongside my observations of the young man, and my evolving response to the challenges he faces.

However, my new-found patience in the aforementioned circumstances has, lately, given way to a new sensitivity to patience as a “total” quality to be embraced. By this, I mean that patience is not simply a tool that I pull out of a box whenever I work with someone with a disability. Rather, it is an enveloping attribute – like faithfulness – to be applied to all dimensions of life. Working with this young man has taught me the value of patience during an activity, and to treat tasks as valuable in themselves. He is evidently untroubled by the length of time it takes him to complete something, and, from what I can discern, allows the activity at hand to envelop him in a way that, for some, might seem an alien exercise. At the same time, he confronts things with which he struggles, but by persisting in them, he has managed to learn the art of slowly, almost ploddingly, developing those skills which others (including me) do almost unconsciously. One’s character is tested in such times, and his is tested frequently. Happily, he invariably passes.

Finally, we come to humility, the last image. I think of another young man, who requires assistance for a number of daily tasks. This includes support in the bathroom. It’s certainly not glamorous work, but lately I have stopped thinking about my own role in this process, and have started to dwell on the evident humility this young man needs to demonstrate every time we work together. He places himself in my hands, so to speak, ceding a measure of control to another person for a period of time. He depends on me to be caring, compassionate, skilful and thorough. More to the point, he simply depends on me – on someone else to help in the completion of tasks that, again, may be performed with unconscious ease by others. Who, reading this, last reflected on the effort it requires to go to the bathroom (to borrow an American euphemism)? I haven’t for quite some time. But, each week, this young man places himself in a vulnerable position in order to complete something that requires him to summon whatever conscious effort he possesses. He does so as he is supported by me, and is forced – for want of a better term – to adopt a humble posture, acknowledging his own, demonstrable, need.

How all of this contrasts with life in the late, modern West. The values I have briefly mentioned are as rare in our world as they are profoundly displayed in the individuals I support. Our society, at least to my impressionistic observations, seems to be marked by a perpetual state of flux and fluidity. In contrast to the first man I described, many people seem to lack the stomach – much less the ability – for faithful commitment to something, whether a job, an organisation, or even another person. Transience seems more characteristic, and I’m not simply referring to our changing economic structure. Even commitment to a faith tradition may only last for as long as it’s easy or convenient.

Similarly, one must ask: where has the art of patience gone? Have we lost it? Are we so bent towards the next moment, or the rush to reach what can only be reached through method and assiduity, that we forget the joy of almost losing ourselves in the small (to say nothing of the large) joys of life? In both work and recreation, the second man I spoke of seems to have acquired this habit. By contrast, so many others have either lost it or never had it in the first place.

The same seems to be true of humility. We have been robbed of the knowledge of our own inter-dependence; the complex web of individuals, structures, institutions, skills, and resources on which we all rely. No man is an island, however much some of us may think otherwise. Although many are in thrall to a rugged individualism, the truth is that we all, like the third man I described, are limited and fragile. Like that young man, we depend on each other, for without the mutually uplifting presence of other people, life would be impossible.

I don’t want to suggest that people with disabilities are uniquely capable of possessing, and developing, the qualities I have tried to describe – as if everyone else was inherently deficient. Nor do I want to idealize the men with whom I work. Like others, they wrestle with unfulfilled desires. Like others, they become impatient. And, like others, they would rather eschew help in favour of (total) independence, even when it’s not possible. However, what I am saying is that what “society” might see as insufferable, pitiable or tragic might actually constitute a position of grace and strength. For my experiences have shown me that the individuals with whom I work are uniquely positioned to acquire and deepen noble habits that elude so many in a hectic, vain and superficial world.

Moreover, what we conventionally think of as “disability” is shaped, to a large extent, by our own social context. Due to the social and cultural structures we inhabit, we may only see difference or inferiority. Working closely with people in this situation, however, has taught me that difference and normalcy are not binary concepts. Indeed, the qualities I have described – and which are conspicuously lacking in so many sectors of contemporary society – are, I would suggest, dimensions of a “normal” life. Witnessing them embodied in people who are regularly seen as recipients of care (at best) has turned notions of normalcy, dependence and value on their heads. We do well to remember this, particularly those of us who, because of our Christian faith, subscribe to the truth that all people, without exception, bear God’s indelible image.

*Stay tuned for another essay, in which I shall explore the intersection between disability and theology. Hopefully, I can offer more than just a glimpse.