Tonight I listened to this beautiful story on Radio 4: http://www.bbc.co.uk/iplayer/episode/b01gvlg4/Its_My_Story_Remembering_Millie/ (This link will work for only 7 days approx.)
If you missed it, I urge you to listen to it. It underlines for me what a wicked arrogance we display when we in the non-disabled community decide that disabled people’s lives can be disposed of, whether at the beginning or nearing the end of their existence. Listening to it has prompted me to re-post here something which I wrote about my own daughter for the Faithwriters weekly challenge 7 weeks ago. The brief was to write a piece in any genre of between 150 and 750 words on the topic of achievement. Here is what I wrote.
There were sounds a-plenty, but none that could be called speech; it was hard to tell if they signified anything. As she grew from baby to toddler, I was convinced that she could understand, even if she couldn’t respond or initiate conversation. If I said, “Close the door,” she would roll across the floor and push it shut with her little body. This gave me real hope that perhaps the doctors were wrong, and she had more intelligence than they had thought.
The first hint of her musical ability came at a very early stage. She would sit in her bouncing cradle, staring expressionlessly into the distance, humming frère Jacques, the tune played by the toy on her cot. What I didn’t appreciate then, and only realised later, was that she was humming it in the same key as the toy on her cot.
The “wow” moment came the first time she encountered a piano. She was two years old. She poked the keys tentatively with her good hand, listening to the sounds they made. And then without hesitation, she played frère Jacques, note-perfect, still in that same key. After that I was determined to unlock whatever was inside her.
Teachers came to the house every week to help me do it. We decided to tackle numbers. Although she still didn’t speak, she could soon point to piles of the right quantity of bricks when given a number from one to five. Next we decided to try colours. For a week she was only allowed to wear red clothes, only allowed to play with red toys, only allowed to paint red pictures and only allowed to eat red food. We were big on tomatoes and strawberries that week, although it’s amazing what you can do with a bottle of cochineal – red rice, red custard, red mashed potato….. Week by week we worked through the colours, and soon she could select the asked-for colour from a variety that we offered.
It wasn’t until she was five that the words began to come. The first word she ever spoke was “cake”! That was followed by “dad”. Monosyllables were all she managed for a long time.
Many painful operations took their toll, and she became frightened and withdrawn. We arranged music therapy, and she relaxed and let go of the fear as she learned to express through music the emotions she couldn’t articulate in words. Her first full sentence came one summer’s day when the door bell rang and I said, “Here’s Jenny come to do music with you.” She waved her good arm excitedly and shouted, “I love you!”
One of my happiest moments followed not long after. Her older sister was teasing her mercilessly, and, unable to get up and leave as any other child could have done, she lay there growing increasingly annoyed. Finally the frustration had to erupt, and she shouted, “Shut your face!” It was so appropriate in the context that I knew, whatever the doctors said, that the wordless exterior concealed a lively intelligence.
One day she came home from school and hesitatingly, haltingly, began to recite a nursery rhyme she had learned. I realised that if she could memorise nursery rhymes, she could memorise God’s word. So I sat down in front of her and asked her to repeat a verse after me, phrase by phrase.
“You have,” I said.
“You have,” she repeated.
“Delivered,” I continued.
“Delivered,” she responded obediently.
“My feet,” I went on.
And that was when she astonished me. Instead of repeating, “My feet,” she finished the verse: “from stumbling.” All those years that I had read the Bible to her, she had been taking it in, though she’d had no way of letting me know.
People abort unborn babies just because they have some kind of disability. If you point out that this is just another form of disability discrimination, the argument is sometimes put forward that it isn’t fair on the parents to have their lives ruined by having to raise a child with such challenging difficulties. To this I would reply that yes, the difficulties are challenging. But the rewards, when the child achieves something you have been told they will never manage, go way beyond anything parents of simply “normal” children will ever experience. And who are we to deny a baby the chance to climb that mountain of effort and reach adulthood with a far greater sense of achievement than their peers?