Seeing the world through a different lens
October 19th 2015
Anybody who has spoken to me for more than twenty minutes or so will be aware of the fact that I am the proud older sister to John, my little brother who has Down Syndrome. To give context to those who don't know me so well - this is due to the fact that I absolutely adore John, and use him as a reference for many points simply because he is such an inspiring, charming and funny guy, and because I have learned so much from the way he has lived his life thus far. Even just thinking about him puts me in a good mood, and many a person who is close to me has been known to ask me 'So how's John?' if they feel that I'm having a bad day and need some cheering up. Talking about what John has been up to never fails to put a smile on my face.
When I started reflecting on some of the things I have learned from John over his 24 years on this earth, my thoughts on the subject started flowing so quickly and easily that I almost felt surprised that it hadn't occurred to me to write them down sooner. There is so much to be said on the topic! I think it possibly just hadn't seemed like a relevant topic to write about on LinkedIn, until last week.
Last Friday, 9th of October, I attended the Tatler Irish Men of the Year Awards, at which Adam Harris, Founder and Director of AsIAm.ie gave one of the most eloquent and inspiring acceptance speeches I have ever heard when he won the Irish Tatler Man of the Year 'Special Recognition Award'. Adam, who was diagnosed with Asperger's Syndrome at the age of five, founded AsIAm.ie with a view to changing the conversation around autism through education, empowerment, advocacy and community. You can get an insight into Adam's work, and how he describes the journey of a person with Autism on his TedxDCU Talk here.
Adam talked about the need for us to change the conversation around disability. He spoke of the need to move away from 'disability' being discussed always as a negative, and from the focus being on the difficulties faced by 'people with disabilities', rather than on their skills and talents - which in some areas will surpass those of the 'average' person. Rather than attempt to relay Adam's points around this, as I most certainly won't do him justice, I will discuss my own personal experiences around this topic, and would strongly encourage you to watch his Tedx Talk.
While the point made by Adam on changing the way we view 'disability' is the common thread that will run throughout this post, my main objective in writing this post is to share with you the many attributes of my brother John, and what I have learned from him.
Interestingly, nearly all of these attributes are skills and behaviours that many of us spend our lives trying to attain, while few of us actually get there. I apologise in advance for my overuse of inverted commas. The aim of using them will be on each occasion to encourage you to consider the term in question, and the objectivity or otherwise of the language we are accustomed to using on the topic of 'disability'.
So, what have I learned from John's approach to life?
An Attitude of Gratitude. John regularly pauses while enjoying the simplest of daily activities, such as tucking into a delicious meal, or going on a trip, to say - 'I love my life'. He appreciates so much all that he has and all of the activities he's involved in, and, focuses always on the abundance rather than the lack of all that is going on in his life. The only lack sometimes is of time, of which much is needed to watch all of the television series he needs to keep up with. That I believe is the only exception.
Unconditional Love. Most people with Down Syndrome that I have met are incredibly open-hearted and warm human beings, and John is no exception. Compassion is probably one of his most innate attributes, and unlike many of us as we grow older and 'wiser', he almost can't help but put himself in the shoes of another person who is suffering. From the time he was a young child you could visibly notice his whole demeanor change to one of intense concern if he felt that something was wrong, or had been wrong with someone. I have fond memories of the time we walked around a huge graveyard while visiting relatives in Australia. John was about seven, and he literally stopped at every single gravestone to say - 'Jane, what happened?' (to the deceased), and then reacted 'Aw, poor thing.' to each and every story. We made pretty slow progress around the graveyard but it was very touching!
Conscientiousness. Many of us, again, as we become older and 'wiser' lose the innocence and pure goodness with which we arrive into this world. We build a picture of who we are and why we are who we are, and can often use this as an excuse to justify ways of behaving that are inconsiderate or unhelpful towards others. If we are challenged on this behaviour we are quick to defend ourselves, and it can be quite difficult to just say - 'I'm sorry, I was wrong', and learn not to do it again. I am very honest with John when he does or says something that is unkind or hurtful, and even after the most heated exchanges with door-slamming and the like, he will return within about half an hour to say that he is really, really sorry, and won't do it again. I have actually seen many examples where he has taken his promise to never do it again very seriously, and been incredibly diligent about it. When he was about 12 he once implied in a game of comparing whose headband was the nicest, that one of his sisters was his favourite (he kept choosing the person rather than the headband). Poor John NEVER made that mistake again. If you ask him now whether he prefers MacDonalds or Burger King he won't tell you. He will no longer choose favourites.
Pace-of-life. There have been several articles floating around on Facebook over the last couple of years on 'the most common regrets of the dying'. Usually people wish that they had spent more time focused on the important things in life - i.e. relationships, and less time worrying about attaining possessions that they will leave behind on their departure from this world. For John, and from what I have seen this is also true of many of his friends, it is relationships, friends and family that are the most important things in life. Celebrations of the achievements or milestones of friends and family are possibly the most important part of life for him, and he will celebrate in style. He loves making other people happy and is very skilled at doing so. See below for the amazing birthday message I received last Saturday! This was one of two messages in fact. There was also a long message on the outside of the envelope which noted that this was a 'big age' for me.
Individuality. John has his own style which is pretty unique. He actually described himself to me yesterday as 'dashing', which was not a word I'd thought of to describe him before, but definitely describes him to a tee! I would usually use the word dapper. He wears dicky bows for most special, and many not-so-special occasions, and before his most recent haircut had started wearing a huge Elvis-style quiff, which I tried to tease (lovingly of course), and was greeted with a only the tiniest of withering looks by way of acknowledgement of my hilarious comment. He doesn't really give a damn what other people think about him, he is true to himself and his own style, and adores dressing up. He doesn't try to dull himself down to fit in with everyone else for fear of seeming over-dressed or unusual. He will sometimes take feedback from me, because I'm apparently a good 'picker', but he knows well that outside of that he is probably the most stylish of us all and should not be heeding our advice.
I have already given a detailed description of five, fairly broad attributes, yet realistically have only chosen a selection of the things I love most about John's personality. As I mentioned in my introduction, there is a tendency to focus on 'lack', on 'inability' and on areas of weakness with regard to the topic of 'disability'.
If we take a step back and reflect on this way of thinking and talking with some objectivity, we will quickly realise that we are in fact approaching the whole topic with a large measure of superiority, and an assumption that 'our' way of being and navigating through life is the way.
We need to challenge these common assumptions, and turn on its head the concept of disability as a term, and possibly even consider it as a term that is in need of redefinition.
A bigger question can also be asked when reflecting on the natural strengths of someone like John who has a 'disability'. Why, or how, is it that John possesses abilities that the majority of us struggle to acquire despite the fact that he is supposedly the one with a learning dis-ability? I have drawn on the teachings of yoga for my answer to this. In developing a yoga practice, much of what we are trying to do is to rid ourselves of the learned behaviours, beliefs and ways of being which our society has taught us, and which do not serve us in a positive way. In my case, being an Irish woman, born and raised in Ireland, much of what I strive to rid myself of is related to unhealthy ways of thinking such as Catholic-guilt, a tendency to be self-deprecating and the idea I should stay small and unopinionated.
John, on the other hand, for whom learning happens at a slower pace, absorbed less of the 'shoulds' and 'shouldn'ts' which most of us were taught during our childhoods and teenage years. A physical example of how this has manifested is in the fact that he still sits on the floor in half-lotus (or lotus - it makes no difference to him, he's a pro-yogi) while watching TV. As children we look to what the people who surround us - usually our parents, and older siblings- are doing, and we copy them. John was encouraged to sit on the couch/a chair rather than on the floor when he got to the age of about seven. He wasn't bothered though, and just kept doing what was innate and comfortable. The result? He has not closed and tightened his hips, and will never have to undergo all of the 'undoing' work that most of us have to do at some stage in our lives either due to injury or through some form of physical exercise.
Similarly, on an emotional and intellectual level, he remained less influenced by the messages he was receiving from society as to who he should or shouldn't be, and what he should or shouldn't care about. You could say that he maintained a closer connection to his true 'Self', or soul or however you like to define it.
What I would really like to ask of you having read this post, is that you cultivate an openness and genuine sense of positive curiosity to get to know and learn from any people with different abilities with whom you cross paths in life. Rather than pitying someone or feeling uncomfortable about the prospect of communicating with a person who sees the world through a different lens, try embracing the opportunity to learn from their wisdom, which in some cases may be more intact than your own.