Dear Pauline, The World is a Rainbow

Dear Pauline (and anyone else who has ever bullied, ignored, taunted or tossed away someone with a disability),

When I was 12 years old I was told that I would never have children due to type 1 diabetes. I was told that I would grow up and lose my legs, my eyes, my kidneys. I was told that if I decided to have babies, they would be born deformed, or dead. I grew up living with a hidden disability. One that tears at my very heart sometimes. One that takes over my life and makes even the smallest moments of life, ones that you simply take for granted, such as eating, or walking, or breathing – and twists them up in a mass of complex decision making, fear and discomfort.

I live with a condition that has damaged my body over the 38 years I have lived with it so far. It pushes and pulls me, it stops my spontaneity and it can rule my life. I have suffered with discrimination, bullying and lack of understanding. Yet here I stand, proud Mama to 3 amazing sons, having done a trail of remarkable things in my very wonderful life. I took all of the struggles and difficulties and differences on my shoulders and carried them with me. I defied the negativities and the tut tutting and the “rules”. I stood up as someone who is “different” and contribute far more than my share to the world, despite my struggles.

I have a son who also lives with a hidden disability. He lives with Autism and is one of the most remarkable humans I have ever met in my almost 50 years of life. His intelligence, language, creativity, perseverance, love and humour, go far beyond that of many adults I know. He sees more than many of you. He knows more than many of you. He contributes already in his short time on the planet, more than many of you. He understands things far beyond his years. He is seen differently by the systems he must live in, yet those same systems try to squeeze him into a box, more concerned about the right coloured shoelaces than his unbelievable knowledge of history or incredible sense of humour.

So when you get up and say that children living with Autism should be taken out of mainstream schools, it cuts very very deeply at a family who already have more than our fair share of burdens and struggles. I spend much of my days and nights managing my very complex health conditions and disabilities, all due to something that was unpreventable, unpredictable and presently, incurable. As a mother I spend a large percentage of time supporting and loving our son to manage his life, as all mothers do. Our morning walks to school are filled with theories and analysis and dreams. His days at school involve all the usual things, including a very positive contribution to his classmates and his school. If anyone should be taken out of anywhere it is certainly not any child with any kind of disability. The range of uniqueness amongst humans is what makes for the rich tapestry of our world. Trying to separate people from each other and put them into slots is a recipe for a bigoted, hurtful, hateful society, but then I guess that is what you are after in the end…

I remember being a young girl and my parents taking me to see the very remarkable movie  “Elephant Man”, coincidentally in the year I was diagnosed with type 1 diabetes. I was devastated by many parts of this film, at one point laying my face in my mother’s lap while I sobbed. This film spoke so strongly to the way the world sees facial difference and visible disability and all of the discrimination and misunderstanding that is out there. It also reflected some of the ways I felt about my newly found hidden disability – isolated, alone, a freak…someone who would be separated from the “rest” of the world. In my youth and newly found diagnosis, I had not yet developed the understanding to know this was wrong, nor my own ability to accept my disability – this came later. Separating our children from each other is not the answer to the very difficult question of how we can best support and educate all of our children, and with our world already tearing at each other, shouldn’t we be encouraging and fostering acceptance and inclusion?

So let’s not make everything the same colour. Let’s celebrate inclusion and diversity in every sense, and experience what it means to be part of a thriving world of unique individuals, supporting each other as a whole. After all it is the rainbow of people that live in our world that make it all the better.

7 Comments

  1. Kerryn Wood on June 22, 2017 at 12:15 pm

    beautiful

    • Helen Edwards on June 22, 2017 at 12:38 pm

      thank you for reading Kerryn

  2. Sarah | Sarah's Heart Writes on June 22, 2017 at 12:49 pm

    So so beautifully written.

    I admit I was far less restrained on my personal FB page in response to this, something that has more far reaching consequences for our children than just her words. Her position and stance gives people permission to further malign and ostracise our already fragile children. I was horrified to say the least.

    Thank you for your words. xx

    • Helen Edwards on June 22, 2017 at 1:07 pm

      thank you Sarah for reading and sharing. I agree there are far more consequences of not just this bigotry but the entire approach of her and those who believe in working against diversity in all of its forms. But there are lots of us who know otherwise and will continue speaking out against these ideas x

  3. Ann-Louise Beck on June 25, 2017 at 9:07 am

    Helen – you have captured so beautifully what so many of us are feeling about this. Thank you. Bec Infanti

    • Helen Edwards on June 26, 2017 at 7:41 am

      thank you so much Bec for reading and taking the time

  4. Helen Edwards on June 29, 2017 at 11:34 am

    oh Gayle thank you so much! Love your work very much

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