Katie Price speaks to Disabilitytalk.co.uk about her son Harvey
My son, Harvey, turned nine last month, and we held a little party to celebrate. The only guests were immediate family—too much activity causes Harvey stress and his behaviour can become disruptive – but he did have a big cake decorated with a picture of a frog.
Harvey loves cakes. He always enjoys blowing out the candles, and he adores frogs. They are his latest obsession. He draws them so carefully and colours them in bright green. At the moment, every scrap of paper in the house is covered in leaping frogs.
The cake and the frog obsession explain a lot about Harvey. Most mothers of nine year olds might boast that their child is learning French or the violin. I’m pleased and proud that Harvey can draw, observe and see colours.
Soon after he was born, I was told he had a serious problem with his sight. Later, I learned that he was blind. Actually, he has some residual vision, and he is brilliant at using it. He recognises colour and shapes. He has even learned to turn them into pictures.
He draws the same things obsessively, over and over again. First it was aeroplanes, then rainbows, now it’s frogs. That’s down to his autism. Like most children with the condition, he periodically gets fixated on one subject. He is also compulsive about routines. Nothing must disturb Harvey’s ordered world, or there is hell to pay.
The cake is another matter. Harvey eats and eats, and if I did not stop him he would do so continually. He is prone to weight-gain, but he is not greedy. He has a clinical condition—I’ll come to that later—which means he can’t control his appetite. The hormones that control his growth are also out of kilter. So he is bigger than most kids. But to the ignorant, Harvey is just a big, fat, blind kid – and he has been called that many times.
I’ve only skimmed the surface of the problems faced by my much loved eldest child, but by now you know enough about Harvey’s disabilities to understand the hurdles he leaps each day.
So you will understand the extent of my shock and anger when I learned that Frankie Boyle, the comedian though he barely deserves the title – has singled out my son out to be the butt of a vile ‘joke’.
To convey the full impact of what Boyle said on his Channel 4 ‘comedy’ show last December, I must, I’m afraid, repeat his offensive remarks in full.
To begin with, he said my ex-husband, Peter Andre, and I had been fighting over custody of Harvey. ‘Eventually one of them will lose and have to keep him,’ Boyle said.
That is the type of cruel offence we expect disabled people to accept. If you are disabled, you are a burden, and people want rid of you.
Then Boyle made a remark so offensive it has no place in civilised society.
Referring to my second marriage, to Alex Reid – we have since separated – he said: ‘I have a theory about the reason Jordan married a cage fighter – she needed a man strong enough to stop Harvey from f***ing her’.
I can’t overstate the outrage and revulsion I felt when I heard this attack on my vulnerable, disabled son. I am used to defending myself against insults and, at times, justified criticism.
I don’t deny there are aspects of my own life and past that have been controversial. I’ve made mistakes in equal measure to my success, but I can answer back – and I do. Harvey can’t.
Boyle’s remark is vile on so many levels. Sadly, I’ve grown used to insensitive jokes about Harvey’s size. When Heat magazine published a sticker with the words ‘Harvey wants to eat me!’ across it, I was appalled.
But at least the magazine apologised. Boyle and Channel 4 have done neither. Boyle’s disgusting suggestion slandered my innocent son and insulted every disabled person in Britain.
Imagine if the reason Boyle gave for saying Harvey was capable of raping me was not because of his disability but because he is black. People would understand how discriminatory that is. It is just as discriminatory when the joke is based on someone’s disability.
That is why I have decided to talk openly, and in detail, about Harvey for the first time.
Tonight my television documentary about him, Katie: Standing Up For Harvey, introduces viewers to my campaign on behalf of every disabled child and adult in Britain. I hope that, through the programme, Harvey’s disabilities will highlight the difficulties — and also the positives — faced by children with disabilities, and their families.
I have been forced to consider my role in putting Harvey in the firing line for Boyle’s humour. He, and Channel 4, have pointed out that I have put Harvey in the public domain by being photographed and filmed with him. As a result, I have been accused of hypocrisy.
I understand that to an extent, and take it on the chin. But I have spent a lot of time talking to people and organisations who see Harvey as a positive role model, and I decided it was in my son’s interest — and in the interest of raising disability awareness— that he play a public role.
This is no justification for the discrimination Harvey has suffered. I want people to stop and think before they make crass jokes against people who can’t defend themselves.
Although the media regulator Ofcom upheld 500 complaints about Boyle’s remarks, and condemned Channel 4 for broadcasting them, it didn’t demand an on air apology. Why not? The decision was indefensible. As the broadcaster of the Paralympics, Channel 4 is, I feel, guilty of double-standards. They should never have broadcast Boyle’s foul joke.
Even the Cabinet Minister responsible for broadcasting, Jeremy Hunt — and a committee of MPs — condemned Channel 4 and its boss David Abrahams, for refusing to apologise.
Since April, when Ofcom made its ruling, I have repeatedly asked Boyle, Abrahams and Channel 4 to apologise to Harvey and to me. They have ignored my requests. Would they have been so blase if Boyle’s slur had been racist? No chance.
So how would I like Boyle — a fatherof-two who, I have since learned, once worked in a care home — to make amends for his insult?
Aside from an apology, I would also like him to learn some respect for those who are not able-bodied. Perhaps he would like to visit Harvey and spend a day in his shoes?
He would learn a valuable lesson.
From Harvey’s example, Boyle might just begin to understand the nature of innocence.
Harvey has a greeting he learned from me as a little boy. ‘Hello sweetheart,’ he says, as he rubs his finger along your chin.
He is funny too, and a wonderful mimic. He catches exactly the tone of his nanny’s voice — I have one daytime helper who does not live in —when she says: ‘See you later. Byeee!’ It is not easy dealing with Harvey’s challenging behaviour. To me, however, he will always be my perfect boy. I would not swap him for an able-bodied child, or send him to live in residential care. My home will be his — until the day I die and beyond — but looking after him is relentless. He can’t be left alone for a moment; we have to watch his every move.
So how did it all begin? Harvey was born in May 2002 in hospital in Brighton. His dad is the former footballer Dwight Yorke. I was besotted with my first baby (I’ve since had a son, Junior, six, and daughter Princess, four, with Peter Andre).
He was a calm, happy, adorable little boy. But when, at his routine six-week check, doctors told me his eyes were not following a moving object, that they were not focusing properly, steeled myself for the worst.
But I didn’t cry. I think of myself as resilient, strong and resourceful. I just prepared myself for the journey ahead.
It hasn’t been an easy one. We learned the full extent of Harvey’s disabilities little by little. To the ill-informed, Harvey may just appear to be fat and blind. To those of us who know the details, he faces many physical challenges.
He has septo-optic dysplasia, which causes his vision problems, and abnormalities in the pituitary gland, which controls growth and physical development.
He also has Prada-Willi syndrome, a rare genetic condition affecting the area of the brain that controls appetite. He is always thirsty, and always wants to eat.
Being autistic, he can be disruptive if his routine is suddenly changed without warning.
Harvey has taught me the virtue of patience. And, through him, too, I have learned the value of unconditional love.
My dear mum, Amy, gave up a much-loved job to help me care for him. If I am not there for the school run – and it’s a two handed job because Harvey’s school is in Kent, while Junior and Princess go to schools in East Sussex – Mum will step in to help our nanny ferry the kids to school. Harvey’s morning routine cannot be altered. Sometimes a tiny change in the order of things – his toast cut into the wrong shape at breakfast time or a window slamming – will send him into a frenzy of kicking and punching.
Our TV’s are all covered with shatter-proof Perspex panels. I’ve lost count of the number of laptops and screens he has smashed. And if he doesn’t want to get into the car, he will sprawl out in the floor, launch his head at a wall, or hit out at anyone in his path.
But on the days when he feels happy, he charms us all. He will sit in the car with me, urging me to go fast over the speed bumps. To Harvey, a car journey can be as much fun as a day at the theme park.
He speaks beautifully – we joke that he is the ‘posh’ member of the family – and his memory is wonderful. Sometimes he’ll repeat phrases we’d rather he forgot. ‘What’s happened to the bloody boiler?’ I heard him parroting the other day after I’d been complaining months ago about the pool not heating up.
No doubt you’ll be thinking at this point ‘Isn’t she lucky? She can afford a pool, a nanny and a lovely home. Of course, I am so much more
fortunate than many parents who are caring bravely and often without outside help, for disabled children. I know this and I appreciate that, in this respect at least, I am blessed.
But there would be no difference in the care a boy like Harvey needs whether he was born into privilege or poverty, and I understand the pressure that having such a child can put on any family.
Every day, six times a day, he needs medication to control and treat his various conditions. His drugs must be taken at 7 am, 8 am, 12.30 pm, 2.30 pm, 4.30 pm and 8 pm.
Every night before bed, there are two oral medicines which Harvey likes to take himself, and an injection which I give him (he chooses which leg). Without his drugs, he dies – it’s as simple as that.
I don’t think about the day I’m no longer here to care for him, though I’ve made financial arrangements for him to be looked after always. As long as I have breath and life, he will live at home with me.
We have good days and bad days, funny days and challenging days, but I do not focus on what Harvey cannot do. He is my son and I love him to bits, which is why I will fight like a tigress for him – and for millions of children like him – against bullies like Frankie Boyle and the broadcasters who air him.
Boyle may think his humour is ground-breaking. I think it’s pitiful, sickening and cruel. If he met my son, I think he’d feel remorse and shame for the remarks he made.
Every day I learn about love, fortitude and patience from Harvey.
He is my perfect boy. He is my inspiration.