Post from Alice Maynard, Chair of Scope
I’ve been thinking a lot about my childhood in the past week, because of the tragic killing of three children with the condition that I have, spinal muscular atrophy.
Ben and Max Clarence, who were three years old, and Olivia Clarence, who was four, were found dead in a house in New Malden last week. Their mother faces a murder charge.
A lot of the media coverage surrounding the case has focused on the huge challenges that Tania Clarence faced, raising three severely disabled children.
But what has really upset me is an obvious thing that seems to have been missed – that three lives were cut short too early.
When I heard the news, I felt it really deeply. Because I am the future that those three children could have had.
Living with spinal muscular atrophy, or any disability, is not easy. I need support from a personal assistant to get up, get dressed and get to work.
People may well look at me and think that my life must be dreadful. But despite my apparent limitations, I love my life, I’ve achieved a lot and I’ve got a lot to give.
Maybe this is hard for people to believe. Scope, the charity I chair, recently looked at how far attitudes to disabled people have changed in the past 20 years. Our conclusion was that the aspirations of disabled people have never been higher. But that society’s attitudes are still playing “catch up”.
Millions of people in Britain still believe that disabled people need to accept unequal opportunity. And disabled people continue to experience negative attitudes in pretty much every area of their lives, in the playground, in the street, at work.
I can’t help but think that these attitudes have been played out in the way that these tragic killings have been reported in the media.
Mostly, there have been outpourings of sympathy for Tania Clarence. Other parents of disabled children have come forward, describing their own battles.
There is absolutely no doubt that raising a disabled child can be an extremely challenging, often isolating, experience. Many of the parents who attend Scope’s Face 2 Face befriending service tell us that they face a constant battle to get the support that they need. Most parents we speak to do not have the nanny, maid and £1.2 million adapted house that the Clarences have.
Mine certainly didn’t. It was incredibly tough for my parents, bringing up my sister – who is also disabled – and me in the 1960s and 70s. Fortunately, we were reasonably well off, and my parents could afford to adapt our house and car, so that we could be as ‘normal’ a family as possible. But in those days, there was barely any provision for disabled people. Our first ceiling hoist was the kind used in garages to remove the engine block from a car, and we were loaded in our wheelchairs into the van on a ramp made by my father from hardboard and Dexion.
We should all be aware of the challenges that families still face – and the woeful lack of support for them.
But murder is still murder. And the fact that the victims were three disabled children, who required a lot of support and attention, should not make it any less so.
Olivia, Ben and Max had their lives taken from them before they’d even really started to live them.
That they were disabled does not make those lives any less valuable.