Living lifelong human care, development, education, learning and service for all.
HOW COULD ANYONE
For World Down Syndrome Day 2019
When this song by Libby Roderick played for me randomly on my iPhone, I was transported back momentarily to the first time I heard this song. It was soon after the birth of my son, with trisomy 21.
There is a YouTube video back in 2007 where you will find that this song had been used by a mom to express her knowing about her child with trisomy 21: How could anyone ever tell you that you were anything less than beautiful?
Being a mom with a child with trisomy 21 did not teach me about disability. The experience taught me about discrimination, dishonesty, the lack of awareness regarding the politics and ethics of childhood and the vulnerable, and friendship letdowns, unbridgeable distances and inevitable painful departures, most of all. The heartaches are rooted in what I later learnt is best captured in something which took me about 10 years into the search of what is the most appropriate pedagogy for a truly living full inclusion school to really be that would truly serve children who are so significantly and pervasively challenged in their physical and other development. I was introduced to the Pegadogy of the Oppresed written by an educator Paulo Freire, who later went on to write the Pedagogy of Hope and the Pedagogy of the Heart.
The mindset, the languaging, the resulting behaviour interactions, and struggles of inclusion, I am beginning to realise are rooted right here. In the relational with another human person, society, wildlife diversity and earth diversity and sustainability, what is actually the basis of that relational encounter?
If there is no true meeting of true respect, nothing we do can make the relational inclusion work. Because there will always be a reason why, by way of law or ideology or dogma or convention or custom or simple convenience that justifies why we can so confidently assert certain impositions of our own belief systems and ourselves on others. So very self-righteousnessly, and without a true dialogue.
The dialogue would, of course, reveal the differences. And what then do we make of that alarmingly seemingly unbridgeable situation of divide?
Being a mom with a child with trisomy 21 taught me that we are all fallible. Very, very fallible when it gets too hard, and that we can break, as a person and as a relationship, unless we learn to love through our own fallibilities, and accept that no one is perfect. Forgiveness doesn’t even actually feature in such a journey. It is a daily communication that doesn’t have words but a calling out of: What is going on with my ecosystem of love and support, mom? And what are you going to do about it- as my mom.
I have learnt that there are no convenient understanding and answers. And so, there isn’t any conclusive framing nor truth nor certainty of knowledge that can assist in the situation of trying how best to help a child who is calling out for a communication that makes sense to the child, other children, teachers, parents, family, extended family, and society at large.
I have learnt and come to accept, in a way with great release and relief from my own anxieties and anguish, that no situation is perfect, unless we accept that what is – is already perfect.
What hurts the most isn’t even that people look away because eventually you will gain the strength and clarity to carve out exactly the pristine ground of sensibilities that you can and will stand on, often alone, but never ever at all lonely nor lonesome. The reason why you can stand is precisely because you have already built an ecosystem of love and relational support that can accept and love you, for exactly who you are. And that you can receive that love, knowing exactly where your own fallibilities are.
The Myth of the Certainty of Answers
What hurts the most is rooted in the rejection of your own helplessness, which is mirrored in the helplessness of the other person who is rejecting that helplessness. When there are no answers, it is frightening. It is alarming. But as time goes on, we realise we are always living in no answers. We only seem to think there is always an answer. We go about chasing this solution and that solution, and then we realise, we are in fact, relating to our own minds, rather than the people, culture and lives of those whom we are interacting with. Or nature or wildlife. And then suddenly, time has passed on, with us having lived a narrative in our own heads. Feeling either very brilliant or very lousy, depending on our inner paradigms of brilliance or lousiness.
Being whole doesn’t mean being a superhuman. Being superhuman doesn’t exist. It is a myth, a cloak which we don on as children to think that the world is black and white. The necessary drama games which we engage in to discover and learn about socio-emotional dynamics, languaging and therefore cognition building are largely misunderstood, if we are not aware of the complexity of socio-emotional development needs of children and adults. My best reference for this understanding is Dr Stanley Greenspan.
However, if the black and white thinking continues through adulthood, and we still behave as if we have a super hero (and by corrollary, a super villain) to fight off, we would end up alienating many others. Especially, the other who is significantly different from one’s experience to date. Until and unless, we are able to stand still and confront this truth about ourselves – that there is no such thing as a superhuman – only then, can we truly begin to live a dialogue of truthfulness.
Everyone is different
I learnt as a mom with a child with trisomy 21 to set very baseline rules when it comes to him, his sister and our family. Having trisomy 21 makes you different. It does not make you less than nor does it make you extra special. Everyone is different, and everyone is, therefore, special.
The trappings of both less-than or extra-special make the individual thus being labelled either victimised or entitled, and both are disastrous for the rightful development and wellbeing of the child, the siblings, the family, the family at large and the child’s attitude in engaging with friends and contributing to society at large.
On March 21, 2019 -Look Anew
I have also learnt not to mince my clarity of perspective. This is coming to year 12 for me. One cannot say that this has not been thought through. This has been lived through. Whatever the textbooks say, whatever you have been taught, whatever you have heard, on March 21,2019, cast it all aside and simply use your everything to look anew. Look, see, feel, hear, smell, touch, and examine your own heart, your own responses, your own narratives, your own inherited legacies- regarding someone with trisomy 21.
Observe honestly and thoroughly, feel and think. And engage. One cannot know someone when one doesn’t know someone. Someone isn’t a statistic, isn’t a rhetoric, isn’t a handshake. Unless you know someone, you can’t really call him or her your friend.
Friends don’t dump friends.
That is all I know. If friends dump you when you need them most, they are at best someone who has journeyed with you on your road of life, and who perhaps had had interests or benefits from the association, and though the journey had been fine while it lasted, it wasn’t really a friendship at all. It was simply a very beneficial mutual association by a high dimensional degree.
A true friendship for me cannot be analysed. It is perplexing. It is a sweet, inexplicable mystery. And it is a true privilege and the most precious treasure.
Many people are terrified of me in this sense when I set the bar of friendship so high. How did that come to be? It is because of my experience as a mom with a child with trisomy 21 and a mom with a child without trisomy 21.
It makes no difference. They are both my children. They are children until they are ready to be fully independent adults. And I support them the same way. What they need, my husband and I will try our best to provide. And whatever struggles they undergo in relating, engaging, participating and contributing in society, we are there to support them to the extent that they need and want us to.
And it is in this context, that I am writing this self-reflection and making a choice to share. This is my 11th year participating in World Down Syndrome Day. Year 2019. When someone gets called in life to speak regarding certain matters that one no longer can keep silent, one simply does.
The clean slate is the best outcome for any advocacy relating to trisomy 21. Everything else is an inherited legacy that traps and binds even more, the more one wants to be associated with such cloaking. The sad songs spun with beautiful celebratory videos are the worst framing for a child with trisomy 21 who doesn’t have a clue why everyone is so sad, until they start to think perhaps they might need to feel sorry for themselves (since everyone is feeling the major melancholic confusion). Just get on with the future possibilities and jive up the adventure of a lifetime. Because the discoveries are so phenomenally to be made.
And every second lost in looking back is every second lost in making a beautiful and unbelievably fascinating new adventure in the future. Be surprised at whatever flows once any mental cells are broken through. Walk out of the imprisonment of this or that, and simply go explore the world, however it is that your great and bold heart, mind and presence allow you to participate and contribute.
Individuals with trisomy 21 Know Who They Are About
Individuals with trisomy 21 don’t need pity nor sympathy nor empathy. They actually don’t even need our respect. Their self-respect and compassion for others are grounded in something beyond many of what we can even begin to imagine to exist. They know who they are and don’t need the trivialising of anything relating to life, of themselves or of their lives.
The second we try to stop normalising, and receive the real, the true communication of an individual with trisomy 21, is the second we realise, there is no trisomy 21. We find, instead, that the seeming divide, is, exquisitely inexplicably bridged, all by itself.
We find only someone standing in front of us. No “Other” either, actually. Nor someone in need. Just someone. A potential friend.
And someone who typically somehow loves joy. Which today, I have stopped trying to figure out why and simply soak in – bask in the natural glow of unconditional love.
The honesty that is reflected by that mirror of the opportunity of friendship with someone with trisomy 21 is the first reflection upon the self of who and where we are in our own life journeys.
And the choices that we are each going to make. And the actions that each of us choose to commit to. And the unflinching honesty that can withstand any narratives that the world tells us or the ones we choose to tell ourselves.
There is trisomy 21. It is a scientific fact.
Deal with the medical and developmental issues, and support it well and adequately, and humbly. Because medical science is really only at its infancy. Passing any exams or professional qualification or having practised in the healthcare, education and developmental intervention profession does not make anyone an expert. Be humble. Be open. Listen and learn from the child and the adult whom you have chosen to dedicate your time, efforts and the mutual sharing of life with.
Celebrate the Beauty of a Real Friendship
The celebration and beauty is the ensuing joy of a real friendship. And that cannot be captured nor made tangible nor reproduced. It can only be lived, and living. It cannot also be scripted for a fake season of seeming awesomeness. And no videos can tell that journey of true love.
A real living relationship is real and living. And it has ups, and it has downs.
And for me and my family, it has no trisomy 21 and it has trisomy 21.
And then I get to the point where I ask myself: So what trisomy 21? My hair is starting to grey. So what? My metabolism is starting to get wonky. So what? I am peri-menopausal. So what? Just get on with enjoying and discovering all the stages and seasons of life.
The real “so what” is how I choose to live the everyday. In the present, with a view of a good and hopeful future. The past is in the past. The lessons all learned or unfolding. All lessons teach us something. Friendships that departed, they have already departed. Security about the future – physical and emotional – who knows what tomorrow brings.
Today: An ExtraOrdinary Everyday Love Affair
But today. Today we can celebrate the highest of ourselves, of those whom we love with all our entire being and of others in the world.
This morning, I saw some birds crossing the zebra crossing in urban Singapore. I discovered that birds can hop. I didn’t know that prior. I have always imagined a free-spirited bird flying. But today I saw several birds walking, several hopping and several roosting on a tree, right next to the traffic lights where we were stopped, waiting for the lights to change. And I thought to myself: These birds are simply so cute and delightful.
I think I might have begun an unexpected love affair with birds this morning. Just like that. Fancy that.
Nobody knows what and how life turns out. But everyday, we can flip it inside out, and out and about, and make a choice: To make our lives beautiful, joyful, meaningful, exciting and yes, equanimously happy. I always add a dose of laughter. I don’t know why, but the more I live life, the more I laugh out loud. The mirth just bubbles up from within. And I no longer care to tone that down. I
experience such deep joy when I am in stitches laughing with my kids or my husband or my family or my friends or my work colleagues or with random strangers having a good laugh at mostly nonsensical stuff of life. I find that everything is quite a bit of a helter skelter for everyone. And once I accept that no amount of logic nor theory can sort it all out, I just burst out laughing – at my own silliness. Like, the edge of rationality seems to be this at the end of the rainbow, and it is a pot of honey. And it is Winnie the Pooh saying, “Well, I am a bear of very little brain.”
And it is all simply, quite delightful.
Because my inner mirror has arrived and it is unsuspectingly and deliciously Pooh Bear. (I have always imagined a Kitty Pryde-Wolverine encounter as my inner story self-dramatics but as life has it, it is Pooh Bear.) And I wouldn’t have wanted it any other way. (I am frankly, deeply relieved, that I don’t have to play it tough through it all. Tough does get a tad tiring after 11+ years.)
May you find your pot of honey at the end of the rainbow. And there are many rainbows. It doesn’t matter what anyone says about rainbows. You maketh it. And you get to maketh it. Always.
Here is the song lyrics:
HOW COULD ANYONE EVER TELL YOU YOU WERE ANYTHING LESS THAN BEAUTIFUL?
HOW COULD ANYONE EVER TELL YOU YOU WERE LESS THAN WHOLE?
HOW COULD ANYONE FAIL TO NOTICE THAT YOUR LOVING IS A MIRACLE?
HOW DEEPLY YOU’RE CONNECTED TO MY SOUL.
© Libby Roderick Music 1988
You Are Always and Can Only Ever Be – Beautiful
And you are always beautiful, no matter what anyone has the gumption to say about anything about you.
You make the last call and say about yourself when you look into that inner mirror which you dare to finally stare hard and look into, and lo and behold: May you see your fully beautiful and resplendent self looking back at you.
The one and only you.
Wishing you a Very Happy Heart Grinning Day.
February 22, 2019
Revised March 12, 2019