Disability, handicap, difference, gift

Carolyn Fletcher writes about Down’s Syndrome

My sister, Linda, has Down’s Syndrome. She used to be described as handicapped; now the politically correct term is disabled.

She is not disabled. She is an extremely able person. She is able to walk, talk, laugh, cry, dance, sing and love. She enjoys life and the living of it enormously.

My sister, Linda, has Down’s Syndrome. She used to be described as handicapped; now the politically correct term is disabled.

She is not disabled. She is an extremely able person. She is able to walk, talk, laugh, cry, dance, sing and love. She enjoys life and the living of it enormously.

She especially loves parties; she loves being the centre of attention in a completely guileless way. She delights in getting dressed up, in having her hair done, and her nails painted.

She eagerly anticipates her birthday each year, having unashamedly made sure that no-one in her large circle of friends and family has forgotten. She opens her presents with huge excitement, though she will not hesitate to give you back the present if she doesn’t like it, accompanied by a wrinkle of her small nose – or even just put it straight in the rubbish bin.

Friends

She has gathered friends all her life. Her affection and openness draw in the acquaintance and the stranger, whether it’s the shopkeeper, the plumber, the carer, the doctor, the postman or the person sitting nearby in the cafe.

Is she handicapped? That depends on what you mean. I have handicaps. I am a bit clumsy; I struggle with numbers; I have poor visualisation of shapes and patterns. I have to turn the road map upside down to work out whether to turn left or right. I can’t fix computers or cars or mend leaks.

Linda needs help with shopping and managing money and cooking. She can just about read and write (like a six-year-old perhaps) but she can’t add up. She can make a sandwich, do the washing and clean the house. She has a speech impediment but that’s not a handicap to her. She chatters away nonstop.

She lives in the moment, whether it’s a moment of happiness or sadness.

She is completely at ease with herself. She has no regrets, lacks nothing, loves everyone. Of course, she is dependent on others for some of her needs, but so am I.

A life of her own

When Linda was born in 1957, family and medical staff urged my parents to put her straight into a mental institution, but they brought her home where she has been treasured ever since. She went to a special school, had private speech lessons and later learned to do simple work on our farm.

Our parents ‘handed her over’ into the care of social services when she was nearly forty years old. They wanted to be sure she had a life of her own, as independently as possible, well before they died. It was a huge wrench and sadness for them to allow her to leave the family home.

After a short time in a shared home, she moved into a tiny house with her boyfriend, her beloved Roger. Once again Linda thrived, as did Roger. The Trust in charge of their care has been wonderful, enabling them to live happy and meaningful lives. Now they both have dementia and need twenty-four hour care, but are still together in their own home.

Termination wasn’t an option when my mother was pregnant with Linda, and, anyway, they didn’t know Linda had Down’s Syndrome until after she was born.

It makes me sad that had my mother been pregnant today, she might have felt under pressure to abort her child. That would have been such a loss to us all. Linda has brought lightness and laughter to so many people and lived a fulfilled life.

Disability or handicap is just difference; part of the wide spectrum of what it means to be human. In all of us our ‘imperfections’ make us interesting and add up to a rich and diverse society. Acceptance of difference is the mark of a compassionate society.

A baby born with Down’s syndrome is not a tragedy. Linda is not inferior to anyone else, or second best. Would she have chosen not to be born? Of course not! She has had a wonderful life.

There have been challenges in caring for Linda and she has needed support to help her live well but she has given back more that she has received. She receives help in an uncomplicated way, and in doing so, gives the joy of the gift back to the giver.

There is no dividing line between giver and receiver. My need allows your compassion to flower. My gratitude gives your life meaning and purpose, and so the gift, the giver and the receiver become a Circle of Blessing.

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