Living lifelong human care, development, education, learning and service for all.
for Dr Felicity Crawford, Ms Manju Nair and their lovely students
Felicity and Manju, who so kindly invited me to share with their students my journey as a mother of a child with Down syndrome, after watching and listening intently and attentively to a series of videos of my journey, posited me these questions which had kept me sleepless for several nights because the question was big and truly relevant for all of us in the room -Felicity and Manju as guides for new educators, young women being prepared as educators, myself as a mom living the role beyond my home. The question was this: “It is clear that your son is already included in the family and his school. What does it take for the rest of society to include him, say in 20 years’ time, when he grows up? What does it take for the students to understand enough to be motivated to begin, work and stay in the special education journey?” I remember responding to her along these lines. “We don’t have 20 years. We can live inclusion today. And I am not even advocating anymore, I am inviting. Those who cannot yet take the plunge are the ones missing out.” It was very interesting because I went home and didn’t even understand my own answer. So after a long lunch with Manju and email dialogues with Manju and Felicity, and thinking aloud with friends at pottery class about my struggles about behavior therapy, this light suddenly switched on at 4.30am this morning with this first line –
Living inclusion is about removing the labels, and the perceived expectations.
It is about truly understanding a person’s need and struggles and supporting that person to become, to come into his or her own. There is no difference whether that person is your child, your father, your niece, or your friend’s child. As long as that person is with you, you understand the need and carry that person through her struggle, right where you called to be with her. I was reading Jean Vanier’s ‘From Brokenness to Community’ and finally grasped this – it is to be able to hold, literally or metaphorically, someone and be with someone in their state of helplessness and distress. There are two arms one uses to envelope another person – a strong and a gentle, working together. One to provide safety and security, one to comfort. One to set distinct safety boundaries, one to allow freedom.
Inclusion is not about providing a solution to address the need that we think we see or know, for the insight can only discovered by the person himself, and the call of help to be named and arising from within the person himself. And if indeed there is a solution, the change that is required is only a real change and can only be activated if it is driven by the person in need himself. Only the person in need can get himself out of need.
Need can be physical, emotional, psychological, cognitive, or spiritual. Need is when a person is in a state of panic, in a state of inadequacy about real or perceived inability to cope. A person who is multiply challenged such as a child with Down syndrome may not perceive himself to be in a state of inadequacy and thus may not necessarily be in need if he is able to come into his own, if he is supported and allowed his own way and own time, to discover the world as a complete human being. The special needs child, in other words, is a condition and a label, that we have inadvertently created in a child who is simply not progressing in the same rhythm and pattern as what we perceive human development ought to be. My daughter, Beth, who is 9, objected strongly to an educational book for children regarding Down syndrome. She vehemently said, “Keith is the same; the book makes him seem different,” and was frankly utterly disgusted, though she doesn’t even know to name that feeling yet. And the book did make Keith look sick, as the authors kept saying it’s a medical condition. Keith, who is 5, took one look at the book, and rolled his eyes and pushed the book away. Truly, I am not projecting, he was not impressed.
So, supporting and enabling inclusion is about waiting. And it means being and staying with the person in the person’s state of dysregulation, which is often disruptive to the dysregulated person and community. It means that we are able to accept the person struggling and its manifestations which are typically difficult, and be there, and stay in the place of discomfort, together. And we need to be and stay, without irritation, impatience, i.e. without expectations of a particular outcome of our own perceived solution or our own comfort, but patiently waiting with full grace for the person in need to find the moment of safety and security, then calm and quiet, then reconciliation and understanding, then peace and joy and then, moral courage to seek either a physical or mindset change, and then focused work to acquire the ability, to get out of the trap of inadequacy. Only then, will the person experience the sacred grace of independent growth in true freedom, and in turn, learn to support others, through any kind of struggle.
Why time and independent growth is important is because another trap is lurking, which becomes a secondary disability when we are unable to be fully inclusive, and that is the tragedy of learnt helplessness that we have inadvertently created in many of our children with extra challenges. Learnt helplessness happens when we are unable to wait and we start holding down the person, training the person to perform or shoving the person into a mould of our perception of how humans ought to be or behave, rather than allowing the person to come into his or her unique self, and then we go about claiming that the desired outcome is successful, because we think we have achieved a particular outcome, but it is all in our own measure. The person in need, is still helpless, who was helpless, never got a chance to learn to get out of his or her own helplessness on his or her own, and so when the situation occurs again, or when a higher expectation is set, the person in need just grows in a greater internal state of inadequacy and comes to a point of just giving up and relying completely on another, and becomes fully dependent instead of being supported in independence.
We can find within ourselves to include because we respect the person, as a growing person, as a person who has a right to grow and become. And we can do this because we believe the person, that the person will get through the struggle and that the person will triumph and that we will all be in celebration. And we can do this because we honour the person’s life and we understand that the person’s destiny is to be in our lives, and us in his. It does not matter how many rounds we have to carry the person through the learning; each time, it is new, each time it is a hike, and each time we both grow, and each time, we are in celebration. I have also learnt from Henri Nouwen that drinking from the cup of life is not about just the joys but the sorrows as well and it is only when we can drink the sorrows within a context of life that we are truly living. And I have experienced that it is only through unconditional love that we are able drink the cup of life. And what is this unconditional love? It is simply, to love with trust. And who knows this best? Every child.
Inclusion for a child with visible extra needs isn’t just about being in a mainstream school. A child can feel thoroughly miserable, alone and excluded in a mainstream school if the child is not truly included. A neurotypical child surrounded by many can still be excluded at home or in school or at the playground. A child with just one other truly inclusive person is already included. So, what does it take for a student educator to understand inclusion?
This is what I’ve come to understand and rename. Inclusion is love. The gap in between moments of full inclusion is abandonment. There isn’t really a black and white space of inclusion versus exclusion. It is about time. It is about moments to moments of practising full inclusion. That deep wound of being abandoned and having abandoned someone is what breaks our heart. And our heart gets put back together when someone reaches out and stays with us while broken hearts heal, and when that person comes along who is able to do whatever is necessary to wait with us, in the dark, in the unknown, while the dawn of first light breaks through. Some nights can seem so long. Some nights are truly long, I wonder too if it can be a whole lifetime of inner work. I came to understand this through the writings of Thomas Merton, and am in deep gratitude for being able to understand this a little deeper, and be able to trust this process of inner growth, of getting through the unknown, into becoming fully human. It is so very much about forgiving ourselves for our own gaps, for the moments when we could not hold the fort of love, for ourselves and for others. And it also takes the forgiving of those in our direct family lineage, global culture, and indeed, the entire history of human civilisation, for the moments when they simply didn’t know how or had struggled to hold up this fort of love for us, when we are most vulnerable, for when we needed them most.
In many ways, it is my children and my husband who are the ones waiting for me. I was the special needs person in the family for the last 5 years because I was the one in the state of panic about perceived external incompleteness and about the real steep learning and the realisation of the work and fortitude that is required of me as a mother for a child with Down syndrome. You asked too about denial. Perhaps you are right. It was denial. But it wasn’t about my child. It was about myself! I could not accept my own disability and I struggled with that truth. And the disability was about not being able to love enough, about not being fully inclusive myself. I was not able to love myself enough through my own growth, because deep down there is this painful truth that what I had understood about love had been conditional, upon worth and ability. I was not able to give myself time to relearn a new meaning of love as I stare and feel the unconditional love for my child but it is foreign for me and I could not name it and could not connect it for myself. And all I could feel was pain, and cry. The pain was about dying to this guilt and shame that I was this lesser human being who had judged so many others and that it had to take my own son to show me this ugly truth about myself. It took me 5 years to forgive myself for my own perceived inadequacy and I kept beating myself up for failing to be a ‘perfect mom’ for my ‘imperfect son’. It was my own brokenness that I was in the deepest struggle with. You saw how many people I needed to hold me while I came out of this half a decade of dysregulated panic while I worked through this one simple maturing in order to be the mom I want to be for my son – to know unconditional love for myself so that I can live it for my son. For I know if I didn’t know this love, somewhere I am not able to extend the full unconditional love for my son, who is truly loved so conditionally by so many, and who only see him as disabled while he is already a whole being. How was I freed from this trap of measuring humanness through ability and worth? I learnt the liberating difference between perfection and completeness. That journey, my dears, brought me down to my knees, but I got through and arrived at a place that is indescribable. It has many names, and it is up to you to name it yourself. I wouldn’t want to deny you of that joy that comes with the triumph of making through on your own, with others holding a fort of love while you get through.
The life and work of a child, especially with extra challenges, is exactly in that – holding a very truthful and painful mirror for ourselves, for society to reflect upon, the meaning of completeness, of being and becoming fully human. My children and husband never judged me when I wasn’t able to be fully present to support them; they gave me the freedom to be, and they always welcomed me and comforted me whenever I am with them, in all my brokenness. I was the one completely judging, thinking, struggling, and in deep pain. They held for me a complete fort of love. I didn’t need to teach my son with Down syndrome how to love. He cups my face tenderly every morning and deservedly, he pinches me when I am nasty. Love and nurturing is right there in our hearts. Right there, we have it when we are born. We just need to reclaim that truth. We don’t need to learn how to be inclusive. We are already born with that; we just need to allow ourselves to remember and not be afraid to reach out for that right to love and be loved; our birthright – to be a fully inclusive humanity.
So, don’t wait 20 years to reclaim your birthright. Many of us with children with extra challenges will eventually arrive, because we are blessed with a destiny and the gift of non-choice. It is harder for you because you have a choice. To jump in or not. But your triumph will be bigger, because you will have jumped a bigger gap than those of us with children with extra challenges. Know that your struggle is merely a feeling of inadequacy about Down syndrome, which is just about an extra chromosome. It is no different from another chromosomal difference such as someone with different coloured eyes. Well, there are some neurological peculiarities, there are behaviours we don’t yet understand, there are significant patterns and rhythms that are different from the bell curve but that’s knowledge that is easy to acquire if we allow ourselves the openness and the time to observe and learn. Children with Down syndrome are not in any way lacking in humanity or imperfect or incomplete. They came intact, as all of us did and do. What is perhaps harder is in reclaiming your own completeness because I have now come to understand that the true journey of inclusion is supporting each other in all our individual and unique lives and work.
Perhaps the simple answer is – Love the child and the parent, my dear educators. And let us love you back.
You took the first step to reach out to us; to hear our story. We, the parents, the children with Down syndrome, the siblings, our extended families, our friends – are here for you as you take your next step into perceived darkness, into the unknown. In your moments of greatest doubts and fear, just remember, there is always light and that it is just a perceived darkness that you are groping in, and that you are not alone. This is how life is truly lived – at the edge of growth and maturing into remembering and reclaiming each and every one of our unique completeness as a human being.
And trust that love will carry us through. And when you can perceive this, then every child is special. And there is no difference between the work and gift of educator for any child, with or without an extra chromosome. And that work and gift is simply to provide a fort of love for the child to come into his or her own in the world, to build and sustain that community of love for the child to live the safety, joy and freedom of a loving process and discovery of becoming fully human. And in time, they take their turns, as educators for other children, so that the light of our humanity passes on as we will need it to continue into the seeming dark edge of the unknown, which is really new growth and continuing life as a human race.
And it will be through your moral courage and loving hands that our light of humanity can survive intact the simple purity of love and completeness that comes with all children and it is also through our children -our future- that we reclaim and reignite in every generation the beauty, the strength and the grace of our humanity. Love cannot be taught nor learnt. Love can only be lived. And we don’t need to wait for the perfect school or for someone to assign us the ideal classroom or when we feel we have completed our training or when the rest of society comes around to support inclusion or when we have possessed tons of resource to live inclusion. We live inclusion through every educator who lives love right now and today, and who stands up and reaches out for every child, especially and critically when there is no other person who can bear the wait for the child to come into his or her own. Living inclusion, my dearest heart friends, is when you and the child become the present and the future that is not measured in ability and worth, but living a humanity that is fully human and complete, pure and simple, in unconditional love and trust.
August 1, 2012