"Everybody is different"
Is the mantra I drill into our daughters.
Katie Price and I are very different women (I only take my clothes off in public for charity for a start).
But then Katie Price and the vast majority of us are worlds apart, but hitherto I suppose I have had a certain respect for her. I guess because she has made a career for herself despite a rocky childhood and because she is the proud Mum of a child with multiple and complex disabilities, Harvey. She fundraises and brings special schooling onto the public agenda.
I don't know the real Katie, the one sitting on the sofa behind closed doors right now with a cuppa in hand and not a scrap of make-up on, wondering what to cook for tea, but some might think that the public image, the pink velour-clad Katie, the glamour puss with perfect hair and comedy boobs, might have been incongruous with a child with additional needs such as Harvey.
Some celebs might have hidden him away, never spoken of him publicly, given him up for adoption even thinking a child who is in any way different might hinder their careers so based on image. I have met acquaintances of those living much less in the public eye who have done exactly that, perhaps through lack of support at the time surrounding the birth and diagnosis, and they have very much lived to regret their decision.
I know not if Katie had an antenatal diagnosis about Harvey's disabilities but I do know that 92% of those who learn ante-natally that they are carrying a child with Down's syndrome choose to terminate. So maybe she said I'm keeping my baby no matter what, and for that we in the disability community have to give her some credit.
But Katie has put herself forward as a spokesperson for parents of children with disabilities. This is a tight-knit group and we all watch each other's backs. Regardless of our backgrounds and our child's disabilities we are all understanding of the hardships, the uphill struggles, the fights for support, the lack of respite, the exhaustion, the worry, the medical appointments and procedures... We may not all experience them the same, but we can relate to one another... or can we Katie?
In a shocking interview with Radio 5, described here by BBC Ouch Disability, Katie claims that there is plenty of support for parents out there, but most are 'too lazy' or 'ignorant' to know where to look or to fill in the forms in order to get it. Ouch indeed. And a blow from one of our own.
Now I am willing to suggest that Katie, not known for being a naturally eloquent orator was meaning to explain that there is not enough help and support for parents out there, and in order to get any at all they must jump through ever increasingly tricky hoops. Often, too exhausted, depressed and feeling it a waste of time they give up and try to make do with what they have. With cuts to resources, schooling, bedroom tax and benefit caps being the main source of worry for most families with a loved one with a disability at the moment, I'm sure she realises that she is privileged to have the money to pay for the adaptations, equipment and private therapies for Harvey that others have to fundraise for. I'm sure she knows she is lucky not to be sleep deprived because she has a team of staff and family to help her. Of course she knows that her fame means that authorities wouldn't dare pass her son's needs by. She also fears those with disabilities being labelled nothing more than an expense in times of austerity. Of course she does... don't you Katie?
No-one would begrudge her that life isn't a struggle for her, but I would hope that she would wish to champion the cause for others less fortunate and more desperate than herself, to stand up and demand a fairer more inclusive society where access to support is given, not fought for daily. Not one where everyone scrambles over the same limited pot of resources.
So I hope what she meant was:
lazy = exhausted/ depressed/ desperate
ignorant = not sure where to turn next
plenty of support = there is some support depending on your child's disability/where you live
I fear Katie has alienated herself from the disbility community with her thoughtless comments this time, instead of wisely using her mouthpiece to call for better support for the rest of us. Let's give her the chance to explain.
What are your experiences of support, respite and services for your family's needs? Join our linky or comment below.
Read Dan Parton's article Breaking Point in Learning Disability Today here. And my experience of becoming ill during the difficult statementing process for our daughter in The Importance of Respite.
Join Mencap as they campaign and highlight the need for short breaks for carers, particularly felt for many during the stressful Christmas period.