If it ain’t broke …’ has been on This Personal Space since May 20th, 2012 and now I am very pleased to announce its availability as an iPhone/iPad download from Ether Books, 12/07/12. A brave decision by Ether – not everyone would take the risk of featuring a story whose main character is a man with Down’s Syndrome, especially one who doesn’t live up to the stereotype of happy, smiley but ultimately helpless dependent.
The app and the download are free. If you felt so inclined, you could take a look and maybe even give it a star or two? Jolly good.
Bit of a cross-post, this, but writing is writing, right? We’re all rather chuffed to have our research paper in the Journal of Medical Internal Research. The link is on my other blog here
‘Lovely Girls‘ is not lovely at all. Described by one person as ‘wonderful, inasmuch as something so crushing can be wonderful‘, and by another as ‘richly conceived and … harrowing’, it is a fictional account of the life of one woman in an institution for ‘the mentally handicapped’. I worked in such places in the mid 1970s and early 1980s. I was part of the closure programme when people were moved from this awfulness to more humane environments, and I saw how the attitudes of both public and ex-patients changed. Service users gained skills and self-respect, our neighbours learned how to communicate with someone with Down’s Syndrome and not patronise them, and the locals discovered that people with learning disabilities liked much the same things as everyone else.
It wasn’t all plain sailing though. Some people – staff and service users – found it hard to adjust. One group of men refused the opportunity to cook their own meals, because that had always been done for them by ward orderlies. They would not clean their toilets because orderlies and ‘low grades’ did that sort of work. They considered themselves high grades, having been part of the institution’s fire service, engineering department, or trusted to remove the bodies of patients who had died. Now they were unemployed, displaced, and depressed, and it took a lot of reflection on the part of our services to see how we had been a part of that, so that we could set about finding new and valuable roles for them.
Amy, in this story, is subject to a regime that permits, by default, institutional abuse and neglect. I have witnessed such conditions, recoiled from the stinking air in wards full of incontinent adults, and observed the pervasive helplessness of otherwise benign staff, warehoused into passivity by a system that did not care. Mostly, we have improved. Mostly, we are able to bring our humanity to the fore and to think empathically about the vulnerable people in our care. But not always, as cases such as Winterbourne demonstrate. With all the protections and enlightenments of our 21st century approaches to care, staff had still somehow become so out of touch with their own concepts of decency that they were able to perceive their abuse as justifiable and ‘normal’.
‘Lovely Girls‘ is fiction, but only just. Find it at The Other Room Journal.
Writing is writing, right? Someone in ‘Good Will Hunting’ said that, if you can do it, you should, on behalf of all those who can’t. Well this link to my other blog, my other life, is my writerly way of speaking for those who can’t. Others have done the same. Journalists have made erudite comment. The BBC gave us the material. But we all knew it was happening, somewhere in our souls, our collective psyche. We knew that we could not always trust humans to act with humanity, or decency, or even just plain neglectfully. We knew that some would see an opportunity for self aggrandisement, satisfaction, ego inflation. But as long as there were systems in place to inspect and regulate, it was not our business.
Well, maybe it is our business. Maybe, since we pay the regulators and the professionals and the carers, we have not just a right but a duty to take a look from time to time. To poke our real-world noses into systems and say that we don’t care what boxes are ticked, this doesn’t smell right. Maybe we should all make friends with our local care homes, nursing homes, and community hostels and offer some home-baked perspective and reality.