He Wouldn’t End Up In One of Those Places … Would He?

It’s been great how many people have stepped up & want to contribute to 7 Days of Action. Here’s a piece from Katherine Runswick-Cole, Senior Research Fellow in Disability Studies at MMU

 

“I remember exactly where I was and exactly what I was doing on 4th July, 2013 when LB died. Like so many other people I followed Sara’s blog and loved the stories about LB but I also knew Sara as a friend and a colleague. We’d met in 2004 at a disability studies conference in Lancaster. We had a lot in common. Sara was a year ahead of me in her PhD at the University of Warwick while I was studying at the University of Sheffield, we kept in touch, writing papers together and meeting up occasionally at conferences and seminars. Each of our PhD projects was (unashamedly) inspired by our sons. LB was a year older than my son W, but our kids shared some of the same labels and we had had similar experiences in a system that still struggles to accommodate dudes like ours.

In 2013, I met Sara at a seminar in Oxford while LB was in the ATU. I remember us talking – how had it come to this? How could he have ended up in an ATU? It was as hard to make sense of then as it is now. As we parted, she went to catch the bus to go and visit LB as she did almost every day for 107 days.

When LB died, like so many other people, I desperately wanted to be part of the #JusticeforLB campaign, to do whatever I could to support the campaign. Because of my job as a university researcher working in disability studies, I’ve often shared LB’s story – I’ve told disabled people, family members, academics, practitioners and students about what happened to LB. My own friends and family have followed #justiceforLB too, many of whom would make no claim to being involved in ‘disability issues’ previously but who understood the scandal of what happened to LB and what is happening with so many other people with learning disabilities.

In a conversation with one close family member, who’d been following the campaign on social media, she asked me for reassurance “W [my son] wouldn’t end up in one of those places … would he?”

I hesitated. And then replied: “he might’.

At first sight, my answer makes no sense. W is content living at home, and bringing a bit of sunshine into the lives of people he meets. Supported by his immediate family, a small direct payments package and a team of support workers, W leads a happy life as part of his local community. But this ‘good’ life feels fragile and precarious; we live in fear of change. Indeed, in this week of action, the social worker cometh – my heart is in my mouth – I fear a cut to the direct payments package; this would have a catastrophic effect on W’s life. We fear big changes and we fear small changes too – small changes can be big changes for W. The people working with him need to pay close attention to him, to be patient and to understand that it is their behaviour that challenges W – not the other way round. If those around W fail to understand that, if we, his parents, are not there to advocate for him, or even if we are there, but we are sideline and ignored, I know that he will be the one who attracts the label of ‘challenging behaviour’. In the process he will take a step, or perhaps even a leap, towards one of ‘those places’.

So in this week of action, we all need to think about how the lives of people with learning disabilities people might become less precarious. The peeling wallpaper, un-cleaned rooms and the defibrillator with no battery in the ATU that warehoused LB stand as powerful symbols of the low expectations and a poverty of aspiration that linger, like a stubborn stain, in the very systems and services designed to support people with learning disabilities. This week we need to imagine things otherwise and to do this we need to keep tight hold of the belief that this ‘disability issue’ is, above all, a human rights issue and that 1.5 million people with learning disabilities have the same rights to live happily in their communities as everyone else.”

 

 

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