Unless you are an avid listener of Radio 5 Live, you might be wondering why exactly I’m writing a post all about Katie Price. Yes, that one. The one with the incredible inflating and deflating boobs, the plethora of husbands and massive media overexposure.
Although I wouldn’t choose the same life path as Katie, I’ve had some respect for her over the years. She works hard. She knows what she wants. She is smart, whatever people think. Most of all, she is a mother and, at that, the mother of a child with disabilities so she’s part of my sisterhood. A sisterhood which, typically speaking, is tight knit. We ride the highs and lows together, helping each other to negotiate the challenging path we’re on, and laughing about the small things the other world doesn’t get.
There are rare moments when the sisterhood lets itself down. Today was one of those days. Today, Katie Price was interviewed on Radio 5 Live and declared, live on air, that there is plenty of help and support out there for families with disabled children, if only they weren’t ‘too lazy and ignorant to go and find it‘.
I can see where her comments have come from. A misplaced sense of achievement that ‘anyone can do I what I’ve done if only they’d just work hard enough‘. Only, here’s the thing. Of course there are lazy, ignorant people in the world and parents who have disabled children are not immune, but anyone taking even the briefest of glimpses into the world of childhood disability can see without a shadow of a doubt that laziness and ignorance are categorically not the main reasons why families in need are not getting the support they need.
Katie Price had an opportunity today that many of us mums of disabled children would be most grateful for. The opportunity to speak publicly to a national audience about why families with disabled children need support and what can be done to make this easier for them to find. She wasted it, in my opinion, for a cheap ego boost.
If I were Katie Price, here is what I would have said:
- Families with disabled children need support. Daily, they are dealing with a variety of enormous challenges, from hoisting a heavy child around the house, to administering emergency seizure medication at 3am, tube feeding their child their every meal, managing daily physio, juggling hospital and therapy appointments, hefting around cumbersome pieces of equipment, burning the midnight oil completing the latest piece of paperwork, chasing appointments, dealing with builders making home adaptations, managing sensory overloaded children who cannot cope with public spaces. Yes, this is all in a day’s work. Somehow normal life has to happen around it, and it does, but for many families this just cannot happen without help and support in the form of respite, home nursing care, direct payments to enable families to employ a carer or home help.
- Knowing what support you need is half the battle. When you have a disabled child, no-one shows up with a helpful manual to tell you what to do. There is no ‘Idiot’s Guide’ or ‘Hayne’s Manual’, especially if your child is undiagnosed. Life unfolds day by day, bringing new and unexpected challenges. You absorb them, realising that life is becoming harder but not really knowing what to do about it. You get on, doing your best, taking on more and more and then one day you think, shit, actually I can’t do this on my own, I need help. You feel sad. You feel a failure. If you have friends in the same situation, you talk to them. Gently, they encourage you to put in that call. The one no-one wants to make. The call to social services asking for help. But reaching that point, just getting to that phone call requires immersing yourself in the world of disability enough so that a) you know where to look for help and b) feel that it’s relevant to you and yes, actually you really need it. This is a tale of both knowledge and emotion.
- There is a postcode lottery in support services. No surprises there really, but support services from county to county vary enormously. Our own experiences here illustrate this point with great clarity. In London, we had no idea there even was help. In Surrey, we knew there was but no-one wanted to give it to us. In Cornwall, we knew exactly what to ask for and, so far, we’ve got almost everything we’ve needed. Within weeks of arriving here we had not one but two Disabled Children’s Support Workers here twice a week to help with Orange’s therapies. Now, we have Direct Payments, administered by the council, to fund a carer for 8 hours per week. In other parts of the country, I have friends in greater need who have lesser support and this is deeply unjust.
- Those who shout the loudest get the most. This is where it gets hard for me. I’m very capable of making demands. I can make them clearly, politely, succinctly and tenaciously. It’s partly who I am and partly because I have benefitted from a fantastic education that has enabled me to articulate my needs and have the confidence to do so. But this is not the reality for many. Parents of disabled children are often deeply vulnerable. In many cases, dealing with emotions that many of us can’t even comprehend. Not everybody is a motormouth. And not everybody is bullish enough to make direct and repeated demands to hoards of professionals week in week out. Because that is often what it takes to get what your child needs. It shouldn’t be that way. Again and again I have seen tired, vulnerable, emotionally worn-out parents knocked off their perch into what is sometimes dangerous and deep depression because they simply can’t face another battle with the authorities.
Some of them have written some illuminating posts on how they felt listening to Katie Price this morning:
Go on, invite us in. Listen to us. We’d love to share our views. That is, if we’re not too lazy to leave the sofa…