Two big things happened in my life in 2014. The first was that my Grandad died, in January. He had been living with us since the previous November, and had been getting steadily weaker. He was 90. My Nan had died the previous August at age 87, following a stroke; after this, he began to visit us every weekend (he hadn’t been out of the house much in the years leading up to that, only to the shops) and we thought he would have a new life, but his health declined rapidly a couple of months after that. They lived in a two-bedroom house in East Dulwich, which we’re currently selling for more than £500K.
The second (related, because I did it with money I inherited from him) is that I passed my class 1 driving test, which means I can drive any heavy goods vehicle. This took three attempts, and I approached three driving schools and had two bad experiences. I still haven’t had the £1,000 I paid to one driving school, which cancelled the lessons the day after I booked them and then insisted on holding onto my money, when I cancelled the refund when it looked like I’d fail a test. I failed the test largely because the school I then went to gave me a lousy instructor who got abusive when I didn’t learn at his pace. I then went back to the same school I passed my class 2 with in November 2013 and passed in early September. I’ve got an entry saved up somewhere about that experience, but haven’t got around to finishing it. There has been quite a bit of work going, and I’ve had one regular booking with a pharmaceuticals company in west London, driving an ‘artic’ out to Worcester every Monday. As I alluded to last Sunday, the CityLink failure may mean there’s less work to go round.
Blog-wise, my main interest has been the plight of people with learning disabilities in this country and in particular, the LB Bill, which aims to keep people with learning disabilities in their communities and with their families as much as possible, and out of the mental health system. People have asked why I’m interested in this given that I’ve not got a learning disability as such myself. The answer is that this is the last group of people who can expect to be separated from their families and put in distant institutions for no other reason than that it’s easier for other people to do that than to make an effort for them, or because no provision has been made, increasingly because of funding cuts. In the past, it was the norm for any child with a disability to spend most of their school life in a boarding school, and many of them found that they landed in long-stay institutions as children or as adults. I know how traumatic this can be, because someone is often suddenly moved from a loving home where they are a member of a family unit, to a large institution full of strange rules and often very hostile people, sometimes a long way away, and this is before any actual abuse takes place, which it often does.
The person I’ve concentrated on in my writing on this issue has been Claire Dyer, from Swansea. At the start of 2014, she was facing the threat of removal to a hospital in Northampton, which was a 4-hour drive from home. She and her family fought this tooth and nail, challenging the section which had been imposed on her in September 2013. Eventually, the doctor in charge of her affairs backed down on this issue, but insisted that the section remain in place. After another crisis in the summer, he again started scouting round for secure units he could put Claire in, as well as sympathetic clinicians who would attest to the “need” for this, without having met her. Eventually he found one outside Brighton, 230 miles from home, and after the family fought this in court and lost, she was moved there without a chance to say goodbye to anyone. Thankfully, three months later, with a mental health tribunal two days away, the responsible clinician there removed the section and discharged her home.
Claire came home in mid-October on home leave, and remained after the section was lifted. She and her family have just celebrated their first Christmas in years where they were all together and she did not have an institution to go back to. She’s also gone back to her old activities, like trampolining, and been to her first football match in years. They are still pursuing the idea of finding a bespoke independent living placement for her some time next year, but right now they are just enjoying family life together. Many autistic people round the UK, however, can’t enjoy this now. Tianze Ni, for example, who has been under section in a hospital in Middlesbrough, has only just started being allowed out of the hospital with his parents, who live in Scotland. He is being threatened with being moved to Northampton, even further from his family. Another young man, this time in a secure ‘home’ in Bradford, was allowed home for only a couple of days, and even this his carers tried to take away from him. Joshua Wills is likely to be moved back to his native Cornwall from Birmingham in 2015 after more than two years in a hospital unit there, but even this is hitting bureaucratic obstacles.
And how could we forget that some people are dying in these places, often because of neglect: because they were kept in a padded cell for years and allowed to eat themselves to death, or because their carers left them alone in a bath when they had epilepsy, or because their physiotherapy was abandoned, communication stopped and they eventually choked to death at night. And while the state has limitless resources to throw at defending legal actions, relatives of people like Connor Sparrowhawk and Nico Reed have to scrimp and save and ask friends to raise money for their legal representation at their disabled loved ones’ inquests.
This is why I blog about learning disability. If it were still blind children being routinely separated from their families and exposed to abuse the way I was as a teenager, I’d still be blogging about that. This is probably the most powerless section of society and which is suffering the worst neglect, with very little media attention, unlike when the same happens to elderly people. The Guardian published a lengthy article by Rebecca Solnit yesterday arguing that 2014 was the year women fought back against male violence in society and the threat of it online. 2015 should be the year we stand up and say “no” to violence and neglect against people with learning disability. Unlike the women in Rebecca Solnit’s article, not all of them can do it for themselves: we must all stand up for them.
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