I switched the radio on the other day and heard a woman talking about her autism. It transpired that she was only recently understanding that she was autistic, and was now a passionate advocate for the role of autistic people in public life. She has become tremendously successful (in career terms), a member of the Institute of the Board of Directors.
It was wonderful to hear, for two key reasons.
Firstly, it showed that being autistic had not prevented this person from achieving, from being happy, from starting her own family, from being included. It was natural and normal, a feature of her overall personality, not the one thing that identified her. There was no sentiment of exclusivity here, no fundamental call for all her life to be defined by her ‘difference’. She referenced her son, now at Cambridge University, who has now realised is as autistic as she is, and how he was learning about the way people reacted to him. His mother was helping him as he navigated this difficult period of his life.
It reminded me of a conversation I had last week with a friend. She spoke of a young man, also doing fantastically well at university, who they all knew was incredibly autistic. They have also now realised it was very evident from a young age.
But as her parents said, ‘What difference was it going to make to be told that?’.
Having a special educational need should not thwart ambition, mitigate against success, or depress achievement.
The second reason why this was so wonderful to hear was that it normalised this ‘special educational need’, making it something we should talk about freely and without feeling a sense of doom, grievance or angst. Why can it not be something incredibly positive?
I think we need to be careful not to stigmatise and weaponise our children early.
‘HE NEEDS ONE TO ONE!’, ‘SHE NEEDS HER EHCP NOW!’, ‘MY CHILD ONLY GETS ONE CHANCE!’ are all common reactions to realising that your child is a little different. But does it really make a difference in the long term?
Well, maybe a little. But, surely, what matters more is that each child is surrounded by love, compassion and understanding. And above all as much normality as possible. If they have this at home, and at school, if they are included and allowed just ‘to be’, then each child will flourish to the best of their ability.
Being consumed by anger with the system, or a desire to squeeze every bit of juice from the system cannot do anyone any good, not least the child in question. There is a perverse consequence too, as it also impacts on those tasked with educating and caring for the child, condemning their responsibility to a tortuous examination of accountability.
Did you provide the correct amount of 1:1 support?
Did you ensure support was provided at transition times and lunch periods?
Did you train the staff appropriately through the latest course?
Provision becomes synonymous with boxes ticked, and the love and compassion towards the child in question is put into jeopardy. Leaders, co-ordinators and teachers prepare for meetings in a state of bureaucratic meltdown, rather than spending loving time with the child at the centre of all this.
My brother, my much-missed and much-loved brother, was special educational needs with bells and whistles. In caring for him, my parents suffered great injustices from the system, especially when a malicious hoax call from hospital told them he had died. My brother couldn’t do much himself, but by God he made a difference to the people around him. No matter of righteous anger about the state’s responsibility to him was going to make a jot of difference, and no bureaucratic whirlwinds would have affected him at all. No amount of money would have significantly transformed his life, nor medical treatment adjusted it.
And no, I’m not saying to leave it be. I’m not saying that parents shouldn’t fight for their child. Far from it. Of course we want the best for them. But let’s have some perspective, let’s bathe in the beauty of this young person given to us, and let them develop at their pace, and in their peace.
Because these children, splendid in their wonderful difference, may surprise you, may well take their place within society and be loved, and then love in their own different way.
Let’s celebrate wonderful difference, and not grieve the inevitable inequality it brings.
*Image is taken from the promo for the film ‘The Reason I Jump’, which I understand is a very special film. I can’t wait to see it.
One thought on “Wonderful Difference”
Your mum, dad, brother and sister provided your older brother Richard with a life filled with love and great humour. It was a delight and a privilege to witness.