Wednesday 3 December 2014

International Day of Persons with Disabilities 2014

I have been so ill this year and particularly bad this past couple of months that I have missed so much. Fate must have been conspiring behind my back, for this morning I awoke refreshed from ten hours of uninterrupted slumber (did not even hear the alarm which was supposed to remind me to turn in bed to prevent bed-sores) with energy and to the most glorious wintry morning. I even went downstairs this morning to greet lovely carer #2 to her pleasant surprise. I actually have a smile on my face. Hang on need another coffee from the Senseo® machine… These drink-making machines are great, creating one cup of a delicious and warming hot beverage whenever I need. Due to inter alia my arthritis and being bed-ridden, I used to have to go without hot drinks for the most part unless someone visited.

Right, back… [slurp] Mmmmmmmm - lovely!

So, to the point in hand: today is International Day of Persons with Disabilities (on Twitter one of today's main hashtags is #IDPD2014). Per UN Enable (screen-shot above) this year's theme is "Sustainable Development: The Promise of Technology". Well, however important that may be from a global, even individual perspective, it certainly is not inspiring me and I do not have the energy, resolve nor cognitive ability to delve into the subject to research it and write a blog-post today.

Instead, I have decided to update on my previous contributions and share just some of the disability issues that have come to my attention over the past couple of days via wifi to my laptop.

In 2012 I published Who represents disabled folk? As it happens Disability Rights UK, one of the UK government's preferred agencies, sent me the following via facebook:

I not only shared, but responded:

Hope he's going to mention political polemic,
MSM slurs/slander/misrepresentation,
and the failure of many charities to step up to the plate!

At the time of writing, no response from DRUK. It's amazing isn't it: just how quickly organisations can fail to respond. What did we do before social media?

DRUK have issued a reasonably balanced, between highlights and low-lights, overview statement on the state of disabled folks' rights in the UK. The following is particularly galling given that the United Kingdom is a full signatory to UNCRPD:

More disabled people are going into institutions than coming out, despite government promises; and the number of people being forcibly treated or detained against their will has gone up year on year. These are major human rights abuses.

In 2013, I pointed the finger at the Office for Disability Issues (ODI) a subsidiary of the much-detested and infamous Department of Work & Pensions (DWP). Interestingly the ODI no longer has a separate website but has been subsumed into a page on Yet again, today is totally ignored; the most up-to-date article is from 4th September 2014 (see screen-shot below).

What does that say about how valued disabled folk are in the United Kingdom? What does it say about the UK ConDem co-alition's attitude towards both us and the United Nations?

Hang on! Pill box is just reminding me I need to take some medication…

As many readers will know, one of my debilitating conditions is myalgic encephalomyelitis (ICD-10 G93.3 - thank the maker for Wikipedia!).

With this in mind, one can comprehend how excited I was to note that one of the first items on my Facebook news-feed this morning was the International Business Times' article to commemorate International Day of Persons with Disabilities: the debilitating truth about chronic fatigue syndrome (see screen-shot below).

I felt like this morning was Christmas Day as M.E. aka C.F.S. rarely gets such coverage. As the spokesperson from the M.E.Association says:

There are no psychological quick fixes for serious, classic ME, but there is mounting evidence that it is caused by a barrage of neurological, immunological and endocrinological assaults on the body.

And incidentally, whilst I have been writing this article, I have just had an email from my G.P. discussing my health-care, what actions we might take and she also arranged for a prescription to be sent through to my pharmacist, who will deliver my meds later. Before e-health I could wait days to hear back from the medical practice replying to slow-mail (aka letters) and then I would have to wait even longer for my prescription drugs to be collected.

Oh, also just now had an email from the agency which supplies my carers discussing arrangements for the rest of the week. Both they and I now have more flexibility in if-when-and-how matters as they can be quickly resolved.

And finally, a couple of matters on transport - in its broadest sense. I received an email (see screen-shot below) this morning from the Papworth Trust asking me to complete a survey on train-travel.

I was more than happy to do so, as I have had some awful experiences. However, I must express my gratitude by stating that the support team at Euston Station in London have always been absolutely fantastic - never once a problem - which is more than can be said for support at Piccadilly Station in Manchester, I am ashamed to reveal.

If you have a spare five minutes, please consider completing the survey. Cheers! %)

Transport for All, is based in London. I am not. However, I believe that what London gets will eventually be shared with the rest of the country. A week or so ago, a friend in Spain made me aware of a video of an invention that could improve the lives of disabled folk, parents with push-chairs, travellers with luggage and so on: an adaptation to escalators.

I shared this with TfA, and they are as excited about it as I am and so have shared it themselves. Thus spreading the word and apprising many more folk of this wonderful idea.

Well, that's it for my review of disability issues which entered my æther in the past twenty-four hours.

Who would want to discuss the oh-so-dull topic of technology? ;)

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