We are all so popular now, so connected. ‘Social networking’ is the new buzzword. New verbs have seeped into our day to day language – we blog, we skype and tweet our thoughts in fewer than 140 characters. We post our status on Facebook and talk and surf constantly on our mobiles, so that the buses in the evening are a sea of heads, all bowed as though in prayer, worshipping their Blackberries and iPhones, tap, tap, tap – the rosary of the text message. And yet in ALL this CONNECTIVITY, there are children who have no friends, real or virtual, no followers. They are the ‘different children’, who may find it hard to communicate, and who feel alone in this world of connectedness.
The path of differentness is embarked on early – the search for a diagnosis, the different sessions with a variety of professionals, the acceptance of daunting labels, the acceptance of difference – a life which becomes a series of appointments – and bit by bit there is the growing separation between the life of these children and the lives of others, between the life of these families and the lives of others. I can still remember the pain in a mother’s eyes as she talked about her son and said “I am used to my 6-year-old son being gawped at ‘as if he were a circus freak’, but I will never be reconciled to it”. She spoke to me about that awkward feeling of having 300 pairs of eyes on you – all watching, all judging a child who is deemed to be disruptive and difficult. Worst still is when parents pull their children away, as though children with difficulties have something catching. Parents become buried under people’s assumptions. This is soul destroying. It’s so bad, so hard to deal with. It is not surprising if some families chose to resist in whatever way they know, this inexorable path to differentness. It is not surprising if some are difficult parents for they are struggling to retain control in that area every other parent expects as a right – to shape their family life and give their children a good start in the best way they know how.
Is this what these families are up against? These families already have so much on their plate as it is and yet the odds seem stacked against them. If only people just gave a bit of space and support, it would go a long way! Living with a disability does not make people ‘special’ or their families as having extra qualities that enable them to deal with their situations. Being called ‘special’ or alluding to the great qualities that makes them different, sets people even more apart.
Parenthood is a source of strength which flows from passion and belonging. Yet, parenthood can also be a fundamental weakness. Each parent is in some sense alone – fighting for what’s best for their own child in a chancy market. They take real decisions in a less-than perfect world, trying to gauge where the balance of advantage lies. Each family is uniquely vulnerable in the power-struggle with vested professional and administrative interests and to complain too long and too loud might mean losing even what they have now. The sheer effort of thinking and planning ahead is sometimes too much and perhaps the vision of a desirable future in which school and communities reach out to include everyone, is a vision that is too distant. It is easy to become stuck in solutions that worked once upon a time, but have long since ceased to function. So, many families accept distorted routines, diminished and dependent lives, because they can no longer see an alternative. Yet, I believe that we all have what it takes to improve the outcomes one child at a time, one family at a time, and then one community at a time, and before we know it, one system at a time. Partnering with schools or families will surely have challenges but it will also have rewards which I am sure are worth the time and effort. When everyone is focused on common goals, we can become weavers of a future that is different from our present.
Working with children with disabilities and/or learning difficulties and their families has taught me more about myself and what truly matters in life than I ever thought possible. They teach me that they are survivors and warriors and can go on to accomplish so much after being written off by many, they teach me humility, compassion and how to be human, they teach me to appreciate life and give me the strength and courage to face the challenges life throws at me, they teach me to step up to the mark and fight for worthwhile causes and to raise awareness for issues which ultimately concern everybody, they teach me to never judge a book by its cover and to look deep within a person and pick out what is wonderful, they teach me to never take anything for granted and to appreciate and celebrate every small achievement, and they teach me unconditional love which only grows.
There is so much more to the child than his disability. Seeing the disability before the child, is not only wrong for the child, but it deprives society of all that child has to offer. Concentrating on the abilities and potential of children with disabilities would create benefits for society. No one needs to feel broken, especially not a child. Let us speak of a world of possibilities rather than disabilities so that every person in society can believe in their own values and limitless possibilities. Disability is just an idea and exclusion is just a habit. ‘Those’ children are individuals – they are not our labels and they are not our assumptions. We don’t need to cure diversity, we need to enjoy it, because it’s beautiful. We are all interdependent so let’s stop labeling people – some as dependent, some as independent – we all need each other. We cannot learn from one another until we stop shouting at one another – until we speak quietly enough so that our words can be heard as well as our voices. I’d like to end this blog by sharing this quote:
“We all take different paths in life, but no matter where we go, we take a little of each other everywhere” (Tim McGraw)
…so let us make sure that what our children are taking with them into adulthood are the beautiful, pure and raw values that help them to live a happy life – full of love, dreams, acceptance, belonging and support.
– Stephanie Bugeja is an educational psychologist. She offers educational assessments. She can be contacted on stephanie@willingness.com.mt.