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Like Katie Price, I wanted to run from my disabled child – then love trumped fear Like Katie Price, I wanted to run from my disabled child – then love trumped fear
(6 months later)
This week Katie Price has faced criticism for saying that if she had known her son would be severely disabled, she probably would have had a termination. Put aside for a moment what you think about Price “the brand”; instead, focus on Price the mother, who talks with brutal honesty about raising a disabled child.This week Katie Price has faced criticism for saying that if she had known her son would be severely disabled, she probably would have had a termination. Put aside for a moment what you think about Price “the brand”; instead, focus on Price the mother, who talks with brutal honesty about raising a disabled child.
When Price speaks the unspeakable, I’m with her. My daughter May is severely disabled. If people do not understand the hardships of raising a disabled child, than they also don’t understand the deep reservoirs of love we have for them.When Price speaks the unspeakable, I’m with her. My daughter May is severely disabled. If people do not understand the hardships of raising a disabled child, than they also don’t understand the deep reservoirs of love we have for them.
I remember when Price was lambasted for using government funding to taxi her disabled son across London to his special-needs school.I remember when Price was lambasted for using government funding to taxi her disabled son across London to his special-needs school.
Related: We must defend Katie Price’s right to welfare benefits for her disabled son | Frances Ryan
Harvey wouldn’t have needed a taxi at all if the local special school for the blind he attended hadn’t been closed down. After that had happened, Price had to put in a bid with the government to open a new local free school for the blind. She’s rich enough to home school Harvey or send him away to a private special needs school – but instead she tried to replace the school for all the local children who used it. The government refused the application.Harvey wouldn’t have needed a taxi at all if the local special school for the blind he attended hadn’t been closed down. After that had happened, Price had to put in a bid with the government to open a new local free school for the blind. She’s rich enough to home school Harvey or send him away to a private special needs school – but instead she tried to replace the school for all the local children who used it. The government refused the application.
So, there is a context to her loud and uncomfortable remarks about raising disabled children. Instead of focusing on the appalling news that a school for blind children was closed down, meaning that children are shuttled hours away from their homes rather than supported within their local community, it became far more entertaining to insult Price. We would rather criticise a celebrity than confront the way disabled children are treated in this country.So, there is a context to her loud and uncomfortable remarks about raising disabled children. Instead of focusing on the appalling news that a school for blind children was closed down, meaning that children are shuttled hours away from their homes rather than supported within their local community, it became far more entertaining to insult Price. We would rather criticise a celebrity than confront the way disabled children are treated in this country.
So the inevitable happened when Price made her comments on disability and abortion. The context – that she didn’t know anything about raising a disabled child and would have assumed that she couldn’t cope – was ignored. And the sentence that directly followed her admission, “But now … if I got pregnant again and they said your child has disabilities I would definitely keep it,” disappeared down a well of self-righteousness where no baby born to any decent parent would ever be aborted because of a disability.So the inevitable happened when Price made her comments on disability and abortion. The context – that she didn’t know anything about raising a disabled child and would have assumed that she couldn’t cope – was ignored. And the sentence that directly followed her admission, “But now … if I got pregnant again and they said your child has disabilities I would definitely keep it,” disappeared down a well of self-righteousness where no baby born to any decent parent would ever be aborted because of a disability.
I wanted to run, truly I did, but instead I couldn’t help but love herI wanted to run, truly I did, but instead I couldn’t help but love her
But, the truth is, when parents discover their child will have a disability, almost every baby is aborted. Over 90% of women who receive a prenatal diagnosis of Down’s syndrome have an abortion. Katie Price only said what most women feel, along with expressing the regret that pregnant mothers have these fears at all.But, the truth is, when parents discover their child will have a disability, almost every baby is aborted. Over 90% of women who receive a prenatal diagnosis of Down’s syndrome have an abortion. Katie Price only said what most women feel, along with expressing the regret that pregnant mothers have these fears at all.
Hayley Goleniowska, from Downssideup, an advocacy site for children with Down’s syndrome, told me: “If our trusted medical professionals had presented our baby simply as a set of ‘co-morbidities’ we would have had no idea of the wonderful, unique individual she would become. Naive to the world of learning disability, we might not have questioned professionals recommending that termination would put an early end to her ‘suffering’.Hayley Goleniowska, from Downssideup, an advocacy site for children with Down’s syndrome, told me: “If our trusted medical professionals had presented our baby simply as a set of ‘co-morbidities’ we would have had no idea of the wonderful, unique individual she would become. Naive to the world of learning disability, we might not have questioned professionals recommending that termination would put an early end to her ‘suffering’.
“If such a termination had been repeatedly offered, right until the end of the pregnancy, might we have succumbed to the pressure?”“If such a termination had been repeatedly offered, right until the end of the pregnancy, might we have succumbed to the pressure?”
Like Price and Goleniowska, I didn’t have to face that decision and that pressure. I had no knowledge my daughter would be born brain-damaged. My understanding of disability then was zero, and I was forced to deal with it. Forced by the soft rolls of my baby’s skin and the warmth of her against my chest. I wanted to run, truly I did. But instead, I couldn’t help but love her.Like Price and Goleniowska, I didn’t have to face that decision and that pressure. I had no knowledge my daughter would be born brain-damaged. My understanding of disability then was zero, and I was forced to deal with it. Forced by the soft rolls of my baby’s skin and the warmth of her against my chest. I wanted to run, truly I did. But instead, I couldn’t help but love her.
That instinct to run came from our skewed conversation about disability in this country. It was all I knew. A conversation that all too often places the word “disability” alongside “suffering” or “abused”, or simply replaces it with “scrounger”. A conversation in which the government’s idea of supporting disabled children is to cut their support.That instinct to run came from our skewed conversation about disability in this country. It was all I knew. A conversation that all too often places the word “disability” alongside “suffering” or “abused”, or simply replaces it with “scrounger”. A conversation in which the government’s idea of supporting disabled children is to cut their support.
The language that surrounds disabled minors is unhelpful too. These kids are described as “angels” when they should be called what they are: children. Children – mischievous, annoying and delightful curiosities. Parents are held up as martyrs “blessed” with special children or deviants who deserve what they brought into the world. We are just parents. We are fallible, and we bake cookies.The language that surrounds disabled minors is unhelpful too. These kids are described as “angels” when they should be called what they are: children. Children – mischievous, annoying and delightful curiosities. Parents are held up as martyrs “blessed” with special children or deviants who deserve what they brought into the world. We are just parents. We are fallible, and we bake cookies.
Until the conversation changes, until the attitude of the government changes, we will be left here: a place where the pregnant mother of a disabled baby is ushered into that ominous, quiet room in the hospital and told in hushed tones the bad news.Until the conversation changes, until the attitude of the government changes, we will be left here: a place where the pregnant mother of a disabled baby is ushered into that ominous, quiet room in the hospital and told in hushed tones the bad news.
As Katie Price said in her next breath when talking about her son: “I absolutely love Harvey so much. I would never change anything about him. Yes, it’s challenging, but it’s also rewarding. He’s a great character.”As Katie Price said in her next breath when talking about her son: “I absolutely love Harvey so much. I would never change anything about him. Yes, it’s challenging, but it’s also rewarding. He’s a great character.”
If only that could be conveyed in the same hushed tones, maybe there would be no need for articles like this.If only that could be conveyed in the same hushed tones, maybe there would be no need for articles like this.