Saturday, 2 November 2013

If I were Katie Price

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.
And that is why I am deeply disappointed in Katie Price's waste of airtime this morning. She had a choice, to be an advocate for the many parents facing similar challenges to herself and to use her fame to work towards a positive outcome, or to mouth off. She chose to mouth off.

Radio 5 Live, if you would care to redress the balance, I know a group of very articulate, bright and resourceful young women who could talk intelligently about how to help families with disabled children face the challenges they do.

Some of them have written some illuminating posts on how they felt listening to Katie Price this morning:

Mrs D Speaks Out
I am lazy and ignorant
I'm a bit cross at Katie Price
The Price Isn't Right

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...



10 comments:

  1. This comment has been removed by the author.

    ReplyDelete
  2. Thanks for a great article and please try and get on the radio, I for one am furious with her remarks, as a grandmother with a disabled grandson I know how much my daughter trys so hard to get the help she is entitled too but often does not get!!, she is not as fortunate as Miss price to be able to employ nannies and other people to do the hard work for her, I doubt she was the one to fill out statementing for school or such like, the only thing about all this is she has got bloody publicity for it

    ReplyDelete
  3. I am furious at this interview, as a grandmother of a disabled grandson, my daughter spends hours trying to get the help and fu nds and equipment she is entitled to and sometimes does not get!! how dare she call some mums lazy and ignorant , I bet she has never filled in forms for statmenting for school or such like, she is lucky enough to pay people to do this for her and pay people to look after her children, the worst think about all this is that she has now got more bloody publicity!!!!

    ReplyDelete
  4. what she doesn't understand is how demanding it can be when you have had little to no sleep caring for a child endless appointments some people don't have the fight left in them at the end of the day, its easy for her she has a childminder on hand to help her most of us don't have that at our beck and call

    ReplyDelete
  5. Thanks for your comments. Isn't it a shame that Katie didn't use her notoriety for more positive means. She could be such a powerful voice for mums with disabled children.

    ReplyDelete
  6. Wonderful post and echoes my thoughts. Please link your post to my #KatiePrice link here http://www.downssideup.com/2013/11/are-you-lazy-ignorant-carer.html and we can get our voices heard together.
    H x

    ReplyDelete
  7. Thanks Hayley, brilliant post, have linky-ed :) x

    ReplyDelete
    Replies
    1. Thank you darling. *Waves acros the coastline* Love your post too. Hoping there'll be many others. Spread the word H x

      Delete
    2. *Waves back*! 'Tis a gorgeous day, the sea is sparkling. Will pop a note out to my SWAN sisters xx

      Delete
  8. This may be a case of expecting too much from someone with limited education. Ms. Price may be famous but is she sharp enough to realise the full future let alone explain it?

    She speaks from her own world, the only one she understands. This is what happens when you do a nationwide interview on disability to someone who is only famous for having a big bust.

    ReplyDelete