Yesterday I read on the Telegraph’s website that Katherine Bowes-Lyon, a cousin of the Queen who was severely mentally disabled and had lived in an institution most of her life, had died aged 87. Her sister Nerissa, who had a similar disability and life history, died in 1986. The story was first revealed to the public in the late 1980s and Channel 4 ran a programme on them in 2011 (reviewed here), which also served as a study on attitudes to people with such disabilities in the early to mid 20th century and on the way conditions for them have changed over the years, which was panned in the media as giving no new information on the Bowes-Lyon sisters than was revealed in the 1980s. The Telegraph’s coverage was shocking, however; it claimed that she and her sister had been subject to “crass intrusion” and called her death “peace at last” in their headline. She was buried in a “private family funeral” and her death, on 23rd February, has only now been announced “because of the sensitivities involved”.
This past week, since the publication of the report into the preventable death of Connor Sparrowhawk in a learning disability mental health unit in Oxford last July, my timeline has been buzzing with reactions to it — different blog articles (including mine) as well as criticism of the response from Southern Health and its leadership, the state of care for this group of people, not just in the Southern Health area, and of the more general attitudes of people, particularly the medical profession, towards people with learning disabilities and autism in particular. People have asked the question of “what would justice for LB look like”, and in this entry I intend to make a few suggestions.
“Want the Tories out next year? Only one way to do it” from Ron’s Rants
Ron Graves explains in the post above that if you want to get rid of the Tories in 2015, the only way to do it is to vote Labour, and not to “protest” by not voting, spoiling the paper or voting for a candidate that doesn’t have a chance of winning. While I agree that the best we can hope for in 2015 is a Labour government, unless you live in Scotland where the independence referendum gives other options, voting Labour will not get rid of the Tories in many constituencies - in fact, it may make a Tory win more likely.
This morning I read a news report and a blog about a single mother who is fighting to keep her two daughters out of the foster care system in Alberta, and find them a home after a temporary arrangement broke down. Sarah Vibert, who lives in Edmonton, has multiple sclerosis and in 2009 suffered a non-traumatic spinal-cord injury that left most of her body paralysed; she has only the limited use of one arm. She is currently in full-time foster care and her husband is out of the country and does not contribute maintenance. The girls are eight and nine, and Sarah home-schools them in her care home during the day, but they live with family friends, but those friends can no longer look after them because of family problems of their own. She explains the situation more fully in this blog entry (and the blog has more recent updates, though not “forever family found” as yet).
It’s been reported recently that a man who killed a man with one punch on a street in Bournemouth has been sentenced to four-and-a-half years in prison (see also today’s Daily Mirror), which means he will likely be released in half that time. Lewis Gill punched Andrew Young in the face after the latter had argued with Gill’s friend, Victor Ibitoye, over cycling on the pavement; he fell back and hit his head on the road, and died the next day in hospital. Gill claimed that Young had made a racist remark (Young is white, Gill and Ibitoye are black) and that he felt “threatened” as Young put his hand in his pocket, assuming that he intended to draw a weapon. He was given two additional three-month terms because he offended while on a suspended sentence for robbery and handling stolen goods. The Attorney General is considering reviewing the sentence. (The Mirror’s story also has CCTV footage of the attack.)
The Daily Mirror yesterday ran with a story about how the royal estates, mostly owned by Prince Charles and the Queen, are raking in tens or hundreds of thousands from housing benefits every year — according to them the Duchy of Cornwall (Prince Charles’s estate) was paid “at least £111,000 from a string of councils providing cash to households”, while the Crown Estate received “at least £38,539” from just one council last year, and those figures do not include money paid first to the tenant. The sums, of course, are trivial, both for the royals mentioned and even for the councils, let alone the national budget. The Daily Mirror probably thought they were following an angle of “the rich are the real scroungers” in this, but they are wrong.
Today the report into the death (PDF) of Connor Sparrowhawk, an 18-year-old who drowned in an NHS learning disability unit in Oxford last July (see earlier entry), was published. That it was published was thanks to a long campaign by his mother, which faced much opposition from the NHS trust involved, which made such excuses as protecting their staff, and faced a last-minute obstacle when police delayed publication so as to consider a criminal prosecution. His death was the result of epilepsy, and he had been left in the bath with observation at 15-minute intervals, which is nowhere close to adequate when supervising someone with epilepsy in the bath. The report also exposes some of the inadequacies of Connor’s care at the unit, which was obviously ill-prepared to care for him and two of whose senior staff believed he should not have been there in the first place. (See also the Southern Health NHS trust’s statement and the family’s solicitor’s report. More: George Julian, Funky Mango’s Musings, Rich West, The Small Places, Mark Neary, FibroGirl, People First England, Making It Up, A Bit Missing, Julie’s Mum.)
Update 5:43pm: The report is out. My response is scheduled for publication at 6:30pm GMT.
Southern Health, the NHS trust responsible for the death of Connor Sparrowhawk in one of its units in Oxford last July, published this statement on its website this morning:
We are aware that many people are awaiting the publication of a report into the tragic death of a person whilst in our care.
We are awaiting final written permission to publish this independent report.
As soon as we have this permission, we will publish the report on the front page of this website and share via twitter.
We are doing all we can so this happens today. If we are unable to publish the report we will release a full statement later today.
The question remains as to whom they are awaiting this “permission” from, because they promised Connor’s mother last Friday that it would appear today. At which point did they realise that they would need anyone else’s permission?
It looks like yet another delaying tactic, and the family have been put through enough trauma by this shabby organisation. At every stage, paper seems to count for more than people - it was noted during the inspection of the unit where Connor died that four out of five staff were attending to administration rather than to residents.
Publish it now.
Update 4:45pm: This from Connor’s mother:
You probably know by now that (like most blogs) this blog uses WordPress. What’s less obvious is the software I normally use to write entries, and that’s because I write it myself and rarely mention it on here, but with the last couple of releases managed to get one out that fix some long-standing, irritating bugs that anyone using it would quickly run into, so I thought I’d mention it on the blog I write that most people read. The software is called QTM, and runs on all the major desktop platforms — Windows, the Mac and Linux, and that’s because it’s based on Qt, which (in theory) lets you write an app once and then run it on several different operating systems (not just the three mentioned, although they are the most common). In practice it’s a bit more complicated if you want the program to look good on all those platforms, but it will work.
QTM mainly supports WordPress these days, but also supports Movable Type as that’s what it was originally written for (not Blogger or LiveJournal). It lets you compose and format entries, save them and post them to your blog. It also lets you compose based on an existing story or blog post (similar to “Press This” on WordPress and “Quickpost” on Movable Type) and use templates to pre-format these posts. It supports Markdown on Mac and Linux (on Windows you will need to install Perl, since that’s what Markdown is written in). It doesn’t let you manage existing blog posts, as yet.
QTM’s web page is here and you can find a Windows installer and a Mac disk image there; I have also set up download repositories for the Ubuntu, OpenSUSE and Fedora Linux distributions. If you need help setting it up, let me know (easier set-up is probably the next thing on the list of things to do).
It was reported today that there has been a rise in the number of teenagers under 18 admitted to adult psychiatric wards, and that these were sometimes hundreds of miles from home and often proved to be highly unsuitable places for them. The BBC reported this here and there is a video clip of a young girl recounting her experience of being sent away (the other reports at present are just wire copy rewrites.) I have seen other reports of this sort of thing happening because of local inpatient facilities closing, notably this disturbing report of a young girl from Hull with Asperger’s syndrome who had been raped, who was sent to a secure unit in Cheshire after her local unit was closed to inpatients and there were no beds on other units in Yorkshire.
So, last week I got my replacement for my iPad, which I was dissatisfied with because of the completely inadequate Apple keypad (see earlier entry). I looked for a similar size Android tablet, because I did quite like the increased size of the iPad and my Nexus 7 was a bit long in the tooth. It seemed like the only Android tablet of similar size and with a decent screen resolution was the LG G-Pad 8.3, also known as the v500, which normally retails for around £250. However, I managed to get a last-minute discount as Amazon reduced its price to £200 just as mine was about to dispatch (if they’d dispatched a couple of hours earlier, they would have been £50 up) and they are still selling it for that price (make sure you get Amazon’s own deal, not the higher-priced one from LambdaTek). A major factor in my decision was that a version of CyanogenMod is available for this tablet, whose own OS is still two minor versions of Android behind (4.2 rather than 4.4). However, installing it on this tablet is much more involved than installing one on a Nexus, and somewhat riskier.
I’ve just had my second letter in about a month published in the New Statesman, a British left-of-centre political magazine, this time on the subject of private education, which they ran an extensive feature on two weeks ago and which continues to dominate their letters page. Last week they published a review of a BBC4 programme, These Four Walls, which featured several families as they struggled to make ends meet. One of them was a mother and daughter (we did not learn who or where the father was), the daughter having dreamed of attending the local private grammar school in Leeds. She sat the entrance exam and was awarded a full bursary, but her mother still had to meet the cost of the school’s uniform and a special bus pass, which came to £2,000, which she did by selling family heirlooms and borrowing from a loan shark. Sadly, and predictably, she left after a short time, despite achieving full marks, because the school (or other pupils) “made her feel like an outsider”.
The Thursday before last was apparently “Zero Tolerance of FGM day”, accompanied by widespread media coverage of various campaigns against it, a petition which apparently gained two signatures per second, interviews with anti-FGM campaigners and various editorials, particularly in the Guardian. In some of these editorials, the authors gave free rein to prejudices that liberals normally manage to keep hidden, and fail to consider whether some of the potential cures aren’t worse than the disease. As is so often the case, the white liberal gets angry when others don’t respond to appeals to become “civilised”.
Well, I’m sending my iPad back to the vendor today. Amazon’s policy is that an item is returnable for about a month, and I’ve had mine a week and a half (although I made this decision last Saturday, but have only just got round to printing out the return labels and packing it up).
There are two reasons why I’m doing this. The most important is that I can’t tolerate the keypad. It takes ages to type things that would take much less time on an Android tablet, simply because the better predictive text on Android saves you multiple keypresses on a screen that you can’t touch-type on because it’s too small. And there’s just no alternative. Seriously, anyone migrating from Android is going to run up against this problem, and my advice is not to bother.
The second is that it won’t connect to certain wi-fi networks, and the reason I suspect is a bug which is preventing it sending passwords correctly on some forms (it did the same when logging into my own blog). You wouldn’t think this was huge, but I’ve already got a tablet and that works fine — £300 is too much to pay for a device that doesn’t work properly, and doesn’t allow you to find ways round its limitations.
As for what I’m going to replace it with, I’ve been looking at the LG G-Pad, which costs about £50 less and has a similar size screen (although it’s longer and the resolution is slightly less), but I might wait until April when it’s rumoured that Google will be bringing out a Nexus 8. I’d ideally like to try it in a shop before buying it, but none of the major high-street computer shops stock it. What I’d really like is an Android tablet with the same dimensions and screen resolution, but there doesn’t seem to be one and the shops seem to be selling Android tablets on the basis that they’re cheap, not that they’re good.
The other day I took delivery of my new tablet computer, an iPad mini with a Retina display, which cost £290 plus delivery charges on Amazon. It’s a wi-fi only model; I can’t afford another contract for a data SIM when my mobile data is more than adequate already. The reason I bought it, despite never having considered buying one until a couple of weeks before, was that I was getting frustrated with the poor quality of my Nexus 7 tablet and the apps that run on it. It’s the cheapest Nexus by far and it really shows in the quality and reliability (or lack thereof) of the device and the performance of apps on it. As I said in a recent entry, I was blown away by what I saw when I tried out a relative’s iPad (the demonstration models in the Apple store don’t really do the system, let alone the software available for it, justice).
I saw this linked on Facebook yesterday; it’s centred around a 1991 American Radio Shack advert in which a Tandy computer is offered for sale at a then reduced price of $1,599 (about £975 today, though I’m not sure what the exchange rate in 1991 was), alongside a portable CD player for $159.99, a “mobile cellular telephone” (i.e. an in-car telephone) for $199, a VHS camcorder for $799 and speakers with a “massive 15in woofer” for $149.95. His point is that assessing inflation is difficult with these kinds of goods, because they cost far less than gadgets cost 20 years ago yet do more (and do different things), while an apple (with a small ‘a’) does the same as it does in 1991 and yet costs more. However, I wouldn’t be so quick to proclaim that the iPhone is vastly superior to a computer with a proper keyboard and screen: their functions are very different.
This morning I went for my latest blood test, which I have to have roughly every six months or a year — I can’t even remember as I have so many of them — because of my thyroid condition (which is a severely underactive or absent thyroid, treated with levothyroxine daily since I was diagnosed at age four or five). It’s no big deal; I get a test form with a bag attached from my doctor, go to Kingston Hospital’s blood test department, have it done and go on my way. This morning I hardly had to wait five minutes, and the procedure itself took less than that. What annoyed me was something the nurse said just before she put the needle in, which they seem to say to a lot of people these days (and they even say it on Casualty).
I’ve used Android since 2009, and I’m currently on my fourth phone and first tablet. I’ve used Twitter since about the same time, maybe a little bit more. Having a smartphone pretty much makes Twitter useful; it means you can communicate when you’re not at your desk and read and share things there and then rather than later, when they may have sunk down the timeline already and interest may have waned. My first smartphone came with a pretty awful Twitter client, HTC Peep, which slowed down my whole phone and I ultimately ditched it for Seesmic, which at the time worked a lot better. Time has moved on, Seesmic has been bought out and only infrequently now updates its client (and removed several of its others), and there are a whole lot of new contenders, yet none that is free of irritating bugs and missing features. Continue reading
Earlier this week, there was a so-called Day of Acceptance (of Disability), organised by a company called 3E Love, which markets a variety of merchandise, like T-shirts, stickers etc, bearing their logo of a wheelchair with a heart-shaped ‘wheel’. Some disabled people objected that the event was a marketing scheme for that company’s products, that they had already accepted their disability and wanted other people to accept them and their disabilities seven days a week rather than one day a year. Saturday week (1st Feb) is meant to be World Hijab Day, “an open invitation to Muslims & non-Muslims to wear Hijab for a day”, which has been leapt on by various media outlets including BBC London. Much as with the occasional bit of disability tourism, however, hijab tourism (or niqab tourism) doesn’t really give an accurate impression of the full-time experience. (The event has a website and a Facebook page. More: Muslim Matters, Ms Muslamic , .)
Regarding the ongoing case of Claire Dyer, the 19-year-old autistic woman from Swansea who is being threatened with a transfer to a secure hospital in Northampton, which neither she nor her family wants: a tribunal started today which is in front of a judge in which the family have a full legal team. The tribunal, however, was adjourned as the health board needed more time to gather or present their evidence. She is therefore still in the unit and can still see her family with the same frequency as before, with one night at home weekly. It has been confirmed that the psychiatrist cannot transfer her to Northampton until the tribunal makes its decision.