Learning Disability Today
Supporting professionals working in learning disability and autism services

Walk on – why everyone’s death matters

We need to recognise all deaths are important and when people with learning disabilities die – especially those earlier than expected – there should be investigation into it and accountability for it, says Alex McClimens.

By the time this article appears online the celebrity cull will be over and famous people will have come out of hiding and started insulting each other on social media again or whatever it is they do to pass the time when they’re not on TV accepting awards for being fatuous.

The celebrity cull was a social phenomenon of early 2016. It started with David Bowie, then moved along to Lemmy, Ronnie Corbett, Terry Wogan, Billy Paul, Victoria Wood, Harper Lee and Prince. And apologies if I missed anyone off the list but my sensitivity for stardom is on quite a high setting. Which probably explains my electricity bills.

This led some people to speculate that there was a mysterious reason behind the loss of celebrities. Well, I can now reveal that my extensive research has come up with a definitive answer. I’m calling it the mortality rate. It goes like this. And I’ll try to keep this simple. You are born and – spoiler alert – then you die.

Of course, whenever people die there will be some reaction from those who knew them. This is usually expressed in various ways that have come to be known as ‘grief’. Society has adapted to this and provides rituals and practices that people engage with when there is a death. Hence, we have ceremonies and public events to mark death and remember the deceased. Death is a big deal, it demands we take notice. And when someone ‘famous’ dies the fuss tends to increase in proportion to their fame.

But for most of us the fuss never extends beyond the immediate family and/or work colleagues. Unless of course the death in question is somehow exceptional or newsworthy. Just over 27 years ago 96 people died in horrific and avoidable circumstances at Hillsborough stadium. They were ‘ordinary’ people doing a very ordinary thing. Some of them may have gone on to achieve fame but we’ll never know that now. But the manner of their deaths was so extraordinary that they have achieved something close to immortality.

Their friends and families were never going to accept the initial verdict and their struggle for justice is a salutary lesson. Fortunately, the people who led the campaign were intelligent, tenacious, committed, fought for access to legal redress and, probably most importantly, were driven by a blind fury that refused to quit when the establishment put massive obstacles in their way. They took on the press and the police and they won. We should all applaud their efforts.

But what of those other, more anonymous individuals, whose deaths are less well remarked? They don’t die in double-digit tragedies that make headlines around the world. They more often die alone as a result of neglect or mistakes. Sometimes there are enquiries, more often not. They often don’t have access to the media. Some, literally, do not have a voice.

In late 2015 it emerged that Southern Health NHS Foundation Trust had failed to investigate 99% of the unexpected deaths of learning disabled patients in its care. They are not the only ones. Five minutes with your favourite search engine will provide evidence that the death of an individual with a learning disability is a loss for their family and friends but a mere statistic for too many bean-counters. And it’s back to the stats again. Work done by the Norah Fry Centre calculated that people with learning disability routinely die prematurely when compared to their non-disabled peers. And we all die, remember. So, why the big fuss?

I suppose we all deserve a bit of accountability in death. Yes, we all die, but did it have to be that way? Could it have been avoided? Was it preventable? And if the answer is ‘yes’ then the people who mourn are entitled, at minimum, to some honesty from those in positions of authority.

And with all these dead musicians strumming their harps in heaven it’s got me thinking about what music I’d like to have played. I haven’t decided yet but I can’t beat my mate, Frank, who, as his wicker casket was fed to the flames, left us all to the dulcet tones of Arthur Brown singing… Fire.

About the author

Alex McClimens began working with people with learning disabilities in Edinburgh in the 1980s. He then went to Sheffield where he spent time in community services before moving into teaching. He currently works in the Centre for Health and Social Care Research at Sheffield Hallam University, where he divides his week between scholarly activity and contributing to student placement experience.

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