1 No Angel Anne McDonald. 2 Last year two cases came up in the media in which children without speech were treated as having no opinions of their own.

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Presentation transcript:

1 No Angel Anne McDonald

2 Last year two cases came up in the media in which children without speech were treated as having no opinions of their own on how their bodies were to be cut and their lives shaped. In both cases girls with severe cerebral palsy, who couldn’t walk or talk, were described as having a mental age of three months. In both cases the parents wanted the girls sterilized.

3 The first reports concerned Ashley, from the US, nicknamed the Pillow Angel.

4 Ashley had her uterus removed, had surgery on her breasts so they would not develop, and was given hormone treatment to stunt her growth.

5 Ashley aged 10 with her family at Christmas Her brother and sister will grow. She won’t.

6 Over in England, Katie Thorpe has severe cerebral palsy. Her parents decided that a hysterectomy would be the best thing for Katie, to save her the pain and confusion of periods. They described Katie as “a 15-year-old body ruled by the brain of a six-month infant”.

7 "I say to every photographer, her tongue's sticking out, she's dribbling, take the picture,” Katie’s father says. “Part of me thinks I don't want that,” her mother Alison adds, “but part of me sees that it's the truth.”

8 At the time of the initial publicity about growth attenuation, Ashley ’ s parents wrote on their blog: “ In our opinion only parents of special needs children are in a position to fully relate to this topic. Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their caregivers. ”

9 I too have a static encephalopathy - athetoid cerebral palsy. As a result I too cannot talk intelligibly, walk or feed myself, and I have a lot of involuntary movement. My understanding is unimpaired, but it’s hard to demonstrate your understanding when you can’t talk or use your hands properly.

10 Like Ashley and Katie, I am a difficult case. While I am one of the early beneficiaries of non- speech communication, I am not a good advertisement for AAC. My motor skills have gone from bad to worse as I get older. I can on my good days manage to use an alphabet board and a Macaw, sometimes independently, but mostly with support. On a bad day my communication is restricted to YES and NO.

11 Here I am in 1963 with my brother and sister.

12 St. Nicholas Hospital was a Victorian government institution for children labelled severely or profoundly retarded. Most of the residents had severe cerebral palsy. It was situated right in the centre of Melbourne, Australia, five minutes walk from the state parliament.

13 At St. Nicholas. How old? Note the tongue thrust… Mental age?

14 At St Nicholas growth attenuation was unnecessary. We were not fed enough to grow. We were meant to die.