Let's Celebrate Variation

LET'S CELEBRATE VARIATION

The other night I watched the absolutely brilliant Sally Phillips documentary on BBC2: 'A World Without Down's Syndrome'. I was intrigued to watch it predominantly because as a student Speech & Language Therapist, the Down's Syndrome community is one that I could potentially be working with at some point in my career. Up until very recently, this week in fact, I didn't know very much about Down's Syndrome. Only the occasional thing here and there. By chance I have been looking more into the condition as part of a course project, and in the upcoming weeks I will be taught about how developmental conditions such as Down's Syndrome, are managed from the Speech & Language perspective. Therefore I was really interested to find out more about Down's Syndrome, and see it from a different perspective. Before sitting down to watch Sally's documentary, I assumed that it would simply be about the new non-invasive Down's Syndrome screening test and the pros and cons for it, as well as what life is like for individuals with Down's Syndrome and their families. And whilst it was all those things, and it presented the screening debate in an interesting and fair manner, what I wasn't expecting, was for for the documentary to raise such prominent, important and thought provoking issues about society in general. In particular how we respond to variation and differences in mankind.

Until this documentary, I didn't realise how very much needed this type of discussion is. I didn't realise how advanced the art of screening has become, and how we can now account for so many different genetic variations and predict them well in advance. I didn't realise how readily available screening is becoming, nor did I really consider the ethical implications of it either. I didn't realise how powerful it could potentially be, for in spite of the benefits screening may bring, such as advanced warning of conditions that we could later develop in life, it's alarming to think that screening during pregnancy essentially affords us the right to choose who gets a chance at life and who does not. It effectively allows us to play the hand of God, a scary thought to say the least. And lastly, I didn't realise how the general consensus amongst the medical professions is that variation is a negative, and that so many professionals in positions of authority, ideally believe that variation should be avoided at all costs. 

Whilst I fully understand that being able to make an informative and educated choice is always a good thing, as is it important in the modern day, patient-focused NHS, I think there's a problem when that information is presented in a biased way, whether intentional or not. Even in a lecture today, someone raised the issue of how we as professionals can unintentionally project our own beliefs, assumptions, feelings and ideals onto the people we are working with, and we don't even realise we're doing it. And when you're in a position of trust, as are most healthcare professionals, we don't realise the influence that we can have over the people we work with, nor do we realise how our perspectives can be clouded by our own assumptions. Even if our advice is coming from a good, caring, well-meant place, which in most cases it is, it can be very difficult to separate our beliefs from those of the patient. What we view as a negative may be a positive in the eyes of another. What we view as an obstacle may be nothing of concern. What we view as important may merely be a speck in the horizon. As a professional, people come to you for help, advice, guidance, support, and I think we have a duty to not only do all those things as best we can, but to do so in a fair and unbiased way. It's not really possible for a patient to make their own informed decision if we're preempting a particular outcome from the very beginning.

Likewise, I believe that the media has an awful lot of responsibility with regards to how it translates and transmits healthcare-related news too. With outlets such as television, radio, newspapers and the internet being many people's first port of call for finding new information, a lot of what we know and understand about the world comes from these sources. And unless we've got experiences or knowledge to suggest otherwise, it's incredibly easy for us to believe and trust so wholly and unquestionably in the things we are being told. If we are told that a new study says drinking four glasses of orange juice a day will prevent us from developing cancer, we will believe it, even if the reality is that the study only found a slight positive correlation, or its methods were flawed to begin with. We don't know any better. We aren't the experts. We just do what we're told and we rarely stop to question it. And if the media hail a new screening test that will detect Down's Syndrome with 99% efficacy, as a brilliant, amazing, win for science and modern medicine, then we will subconsciously believe this is true too. We will automatically view it as a positive, even though we haven't stopped to think about the other side of the story, and what that might tell us.

Watching Sally's documentary was a particularly poignant and alerting watch for me, mostly because it got me thinking about the job I am training to do, a Speech and Language Therapist, and how in some respects I am essentially becoming part of the machine that tries to suppress and correct variation instead of celebrating and encouraging it. Obviously there are some client groups I may work with, for whom this is not the case, and the need to help them is for health reasons, such as those with laryngeal or swallowing problems, or to help establish effective means of communication, however basic, and help them discover or rediscover their voice. A lot of Speech & Language Therapy does come from that all important heart of helping people to communicate effectively, because communication is essentially what makes the world go round. But things like Sally's documentary do make me question if my future career will merely see me feeding into the system that views these wonderful, beautiful, inspiring variants of life and normality as disorders, impairments, difficulties, things to fix, problems to solve. If my career is basically helping people to become 'normal', whatever that may be, and build them up so that they meet society's expectations of what is acceptable. Will I just be helping to make the existing problems with society's outlook worse, even when that's the last thing I want to do? Will I be re-enforcing the idea that the people I work with are lesser than everybody else, that they won't have the same quality of life, that they need to change who they are and suppress the very things that make them unique and so wonderful? 

When I helped out at a stammering convention back in September, a talk I went to highlighted that all important question: who is it that really has the problem? And with regards to quality of life, during our training we're taught to see the communication impairment as the problem, it's the individual who has the problem, when what if in some cases, it's actually society's reaction to it, that's the real problem? The lack of understanding, the lack of acceptance, the lack of adaptation and accommodation, the lack of support and education, the lack of opportunities, the lack of kindness and consideration and humanity. I think it's so hard for us to view things from that perspective, because it's hard for us to understand the gravitas of such a fundamental, devastating human error. It goes beyond our comprehension, and the way we have been raised to view and process the world around us. It's easier to shift the blame somewhere else instead of stopping to take a long hard look at ourselves both as individuals and as societies. But similarly, at the same time I understand that it's such a difficult topic to talk about because of its complexity, and how their isn't really somebody to blame, a scapegoat to pin everything on to. It's easy to understand both sides of the story, both sides to the argument, so I guess the most important question is this: where do we go from here?

Referring back to Down's Syndrome in particular, this documentary reminded me that these people are so much more than the labels placed upon them, and how a variation from the 'norm' doesn't mean they are any less than any other human being, nor does it mean their quality of life is any less either. We all make up a huge melting pot of variation amongst us, it's just sometimes our variations, the things that make us unique and brilliant and who we are, are more distinguishable and noticeable than others. It reminded me that as a healthcare professional in training, I need to make sure I always see the person at the very heart of everything, not the label or the diagnosis, and how I always see them as my equal too. How I need to use my career to help people live the kind of life that they want to lead, irrespective of anyone else. In the healthcare world it's so easy to formalise things, dehumanise things, and become detached from the all important emotional, real, humane core of everything. And when that happens, that's when I think we can really learn a thing or two from the very people we're trying to help. In our society we are cultured to strive for the norm, for perfection, for acceptance, for validation, for authority, for status, for superiority, even though these things are unachievable, unimportant and with regards to the norm and perfection, don't even exist in the first place. They're just guidelines we're initially taught to help us make sense of the world. And in striving for these things false ideals, we end up losing our perspective on what really matters in the first place. We forget how to be good people.

Those deemed 'different', 'impaired', 'disabled', 'disordered', 'weird', 'imperfect', 'ugly', 'stupid', are in fact some of the most inspiring, incredible, beautiful, wise, wonderful, humble, good, kind, strong, best people you will ever know. To even be able to meet people like them, let alone work with them, is such a blessing, and to think that every day I will get to work with the best people society has to offer, makes me feel like the luckiest person in the world, as does it motivate me to carry on slogging away at my degree. To see how these people overcome adversity day after day, how they carry on with a smile, even when times get tough, how every day they go out into a world that struggles to understand, accept and help them, how they touch the lives of those around them so effortlessly and beautifully. Even though in theory I will be the one to help these people, they will be helping me in return and perhaps more so. Their strength, resilience, hope, goodness, kindness, acceptance of others and of themselves, their outlook on life, all these characteristics that make a good human being, they have by the bucket load. They are the people we should be learning from. And that right there is why I think variation is such a core, essential, key component of life as we know it. 

Not only does variation keep our species thriving and evolving and adept in the physical sense, I also think our perspective towards variation, and how we deal with it and approach it, is the very thing that helps us to evolve into good human beings. It nurtures our humanity and it has a knack of bringing out the very best in us too. Variation makes us human. How we respond to it is what makes us humane.Variation is the core power behind life and existence. It's what makes it possible in the first place, a key principle, and it's such a wonderful, incredible, eclectic and unique concept. And I think the only reason why mankind resists it, or on the converse, tries to gain the upper hand over it, is because sometimes we can't quite comprehend its magnitude, or how it is the one thing we have, up till now, been unable to fully control. Us humans struggle to understand differences, even though they are our maker, and we to accept the unknown and uncertainty. You only need to look at history to tell you that. It makes it harder for us to make sense of the world we live in, and ourselves as a species within it. But the older I get, the more I realise how important and treasured variation is. We get sucked into that cloying us vs them mentality, yet the reality is that none of us are the same. There is no right or wrong. There is no perfect or superior human. We all look different, sound different, walk different, talk different, view the world different, act different, think different, have different strengths and weaknesses, perfections and imperfections, potentials and limitations. We are all flawed. We are all an asset to this world, and that is because of our uniqueness. There is nobody else like you. Nobody else like me. And being a good human isn't dependent on how 'normal' or perfect you are, nor is having a good quality of life and enjoying your life, dependent on being 'normal' either. Anybody can be a good person, and anybody can live an incredible life, with the right support, help and care.

So I guess it's time for us as people, and as a society, to start to question our mindsets, question our approaches, question our opinions and beliefs, and why we formed them in the first place. Of course we are all entitled to our own opinions, and of course many of them stem from valid reasons, but I think there's a fundamental problem when we let those opinions stem from our fears and preoccupations, and when we let those opinions give us permission to dictate the premise of who should be allowed to live and who should not. Variation is nothing to fear. Variation is not a mistake or an error or a problem. Variation teaches us about the world, life, ourselves as human, and who we are as individuals. Variation makes life possible in a multitude of different ways. Variation makes us unique, and it makes us who we are. Variation is something we have already learned to cope with and are still learning to cope with, and things as a whole are getting better. Acceptance of variation is on the rise. As a society, even though we have our problems, some more pressing than others, and no we aren't perfect, it fills me with immense joy to see how the views of my generation have already altered from those ahead of us. We're more open minded, understanding, accepting, and we embrace variation in whatever form it may present, and we will carry those characteristics forward throughout the rest of our lives. The future looks promising, or at least from where I'm standing, and things really do have the potential to get better. At this point in time, as a species we're developing in more than one way: we have our scientific discoveries which will lead us into unknown territory, and we have our emotional development as society and individuals, which will also lead us into unknown territory. Both can change mankind as we know it, and I don't know about you, but I certainly know which one I prefer.