Mama LewisAND THE AMAZING ADVENTURES OF THE HALF-BRAINED BABY

Tweet

Does this story sound familiar? From an article in The Guardian about Katie Price, glamour model and mother to a disabled son:

“I can’t fault the NHS. Even though when Harvey was younger, I thought they were a bit shit,” she says, and thinks about it for a while as the hairdryer roars. “They were shit, actually. We didn’t get any support. I remember the health visitor who first looked in his eyes, who said, ‘Oh, he’s not really following. I think you need to go and see your doctor.’ So I went to see my doctor, he did the same thing and said, ‘No, that’s not right. I’ll make you an appointment for the hospital.’ We went up there and it was like, ‘Yeah, he’s blind.’

“And my mum and I were like: so what do we do now? And they said, ‘Well, there’s not really anything you can do.’ Do you remember that?” she asks her mum. “And we left there feeling really shit. We were like, can you not help us? Is there any help? Where can we go? We should have been offered support.”

Was she at May’s diagnosis?

I have no interest in Katie Price, the brand. But to Katie Price, advocate to disabled children and her own child, I feel a kinship. When she tried to set up her own school for visually impaired children because Harvey’s school was being closed and the children siphoned off to placements that could not meet their needs – I was with her. Even though I’m sure the idea of Katie Price, educator, was the butt of jokes across the land, and even though I’m a teacher and I hate the idea of free schools – her school is the only one I’ve heard of yet that I thought was worth opening.

The government is ripping funding from disabled children across the country, so I know it is happening where she lives. Her son, like my daughter, deserves better. And, it isn’t enough to say, “Well, she is rich, so she can buy Harvey what he needs.” Other children at the school didn’t have that option and she tried to save all of their education, not just her son’s. Besides, very few parents think an ideal education is one where their child is homeschooled without access to the facilities, social life and professionals a special needs school would offer.

The government takes away. And then, of course, the government turned down her application.

I respect Katie Price for one other reason. She talks bluntly about her son’s disabilities. The journalist asks her about her hopes for Harvey’s future – a question that completely ignores the obvious family support he is surrounded by during the whole of the interview. She whips back with dark humor: “Oh – he’s going to have a shit life. Isn’t he?” she says, laughing and turning to her mother… She adds after a pause: “Ha ha. No, I’m joking.”

Like Katie Price, I am drawn to speaking about my daughter, and repelled by transparent prodding. Katie Price is unapologetic. She is in love with her child. But, some people are never satisfied if you don’t play the victim.

I defy anyone to read about our lives – hers or mine – and find a misery tale.

Photograph from the article: Zed Nelson for the Guardian