Monday, 2 May 2016

May is International M.E. Awareness Month


May is International M.E. Awareness Month and the 12th May is International M.E. Awareness Day, for which I am preparing a brand-new blog-post.




[Image description: logo; a blue ribbon encircled by the words BLUE RIBBON FOR MYALGIC ENCEPHALOMYELITIS (ME);
beneath all this the word "awareness"]



In the meantime, here is a list of all my previously published posts which are either directly about myalgic encephalomyelitis or there is pertinence to the illness. They are listed from most recent down to initial blog-post.

21.04.2016 (04/21/2016)     My Long-lost Ability to Read
Celebrating the return of my ability to read for extended periods & for pleasure.

02.11.2015 (11/02/2015)     Disability Activism Relinquished
(i) Explaining my reasons for giving up being an activist for disability issues;
(ii) Confirming I shall continue as an M.E. bedtivist.

13.10.2015 (10/13/2015)     'Flu Jabs & Myalgic Encephalomyelitis
Whether or not M.E.-sufferers should take vaccines & specifically for influenza.

01.09.2015 (09/01/2015)     Medical Support for the House-bound
Discussion on the dearth of health, medical & social support for the ill, disabled & elderly folk who can rarely leave their homes.

11.08.2015 (08/11/2015)     Severe M.E. Day
(i) An attempt to raise awareness of severe M.E.;
(ii) A list of severe M.E. symptoms.

31.05.2015 (05/31/2015)     Global Endemic Plague
(i) An attempt to raise awareness of the size and scale of M.E.;
(ii) A list of symptoms.

A diary of Facebook updates over the course of May 2014.

12.05.2014 (05/12/2014)     Addlement or Brain-fog
A look at one of the most common symptoms of M.E. - dyscognition.

12.05.2014 (05/12/2014)     International M.E. Awareness Day, 12th May 2014
Live-blogged diary of twenty-fours in my M.E. life plus update on ramifications.

08.05.2014 (05/08/2014)     "This is the face" of M.E.
A poem by guest-contributor Sophie Turner.

25.11.2013 (11/25/2013)     DWP Aggro & Clairvoyant Nurse
(i) Bureaucratic difficulties in obtaining legal entitlement to social security benefits;
(ii) Mis-diagnosis and medically inappropriate expectation that my severe M.E. will ameliorate in 18 months.

27.05.2013 (05/27/2013)     All Back
A poem about desperately wanting my pre-M.E. lifestyle.

01.05.2013 (05.01.2013)     No Sex Please, We're... Disabled! *
Difficulties in finding a sexual partner when one has M.E.


14.12.2012 (12/14/2012)     Battlers in the ME/CFS Wars
A plea for tolerance, common-sense & pragmatism to prevail.

31.07.2012 (07/31/2012)     Judgmentalism of Invalids
(i) Description of the on-set of my M.E.;
(ii) Discussion of how UK society perceives & treats disabled individually and collectively.

18.05.2012 (05/18/2012)     Pain: a Taxonomy
A classification of pain as I experience it.

%)

Sunday, 1 May 2016

Art for All


In my first term of junior school, I went from sitting at the back of the class to the desk directly in front of the chalk-board, and still I could not see what was written upon it. A speedy trip to the optician revealed a usually hereditary condition, which no-one else in the family was known to have had, as they all had or had had, really good eyesight. I required new spectacles every six months as my vision was deteriorating rapidly. My parents were mortified that they had just thought I was clumsy. I was apprised that I should likely be blind by twenty-one. Being a bibliophile I dreaded that I would not be able to read, so began to teach myself Braille.

As it happened, I did not go blind. My sight deterioration stabilised. My prescription is so strong that folk with good vision instantly hurt their eyes/get head pain when looking through my glasses. Even with high-density materials, my lenses look like the bottoms of bottles. Approximately eighty percent of folk with disabilities develop them during their life-times; so only about twenty percent are born already disabled. Very few have warnings of pending disability and time to prepare for it. And, per the Office for Disability Issues (ODI) around eleven million folk in the UK have some kind of disability; that's about one in six of us.

In my art classes at secondary school I developed my own personal technique to raise the images I drew so that they could be sensed via touch alone. I would start by thickly layering wax-crayon across the surface of the paper. Then I sponged colour as needed in blocks or across the whole waxed layer. Once this had dried, I used Indian-ink, most often black, and scraped silhouette images, usually of leafless trees, but also, bodies of water, people, dogs and other plants. To this day (I am now in my fifties) I still possess two or three works. Alas, in storage.

Galleries & Musea

In my late teens cum early twenties I went to work whilst most of my school-chums attended university. However, I used to spend most of my weekends visiting various university campuses. On one such trip I took myself to a museum, where I was the sole visitor. Back in the mid-1980s there were seldom security cameras. I strolled about the exhibits touching, feeling the statuary. I had not realised how cool marble is as I had not encountered it up to said point. My fingertips could feel the smoothness of skin, the curls of hair.

I understand that touching is a risk to artworks due to acidity and dirt in body oils and sweat. Nonetheless, there are millions of items that never see the light of day, I cannot see any good reason why a proportion could not be set aside for galleries where touching is permitted.

I should also like to see audio descriptions available for at least permanent items on display and their concomitant labels. This would be of assistance not simply to the blind but also those with other sight impairments.

And finally, a plea for seating that can be used for resting in every room/salon/space.

Theatres

Prior to becoming disabled I was an avid theatre-goer. There are several reasons why I very rarely attend nowadays. The main reason is the seating, especially for older theatres, which is so damned uncomfortable. I have to be having a really good spell to be willing to put up with the resulting pain. A second issue which seems to becoming more prevalent in dance and avant-garde performances is no intervals. I understand that professional performers want to keep in the zone, but many disabled, chronically sick and indeed elderly need toilet breaks, or an opportunity to rehydrate, take meds, and so forth.

I would also like to see the return of usher/ettes. At Manchester's Opera House there is now an at-seat service, by which one can order drinks &/or snacks and they are brought to one at the interval. A boon to folk who cannot stand for long and especially not in queues.

However, pluses include occasional BSL-signed performances for deaf folk, loop-systems for the hard of hearing and free or reduced tickets for assistants.

Cinemas

With the same seating and lack of interval issues as theatres, cinemas additionally have the problem of loudness. In 2011 I went to the Cornerhouse cinema in Manchester to see Pedro Almodóvar's "The Skin I Live In". The sound-system created such noise and vibrations my blood-pressure dropped and I began to faint. My companion escorted me outside into fresh air and we decided to go home. I did not return until December last year in order to see the latest Star Wars. I took with me a pair of ear-plugs. I followed the tale with no problems and did not swoon. I may have found a means to more frequently visit the flicks.

Seating can be improved. Showcase Leeds Cinema offers fully reclining seats. I have inter alia osteoarthritis in my lumber and left hip. Sitting is one of the most uncomfortable/painful positions for me. Being able to recline, as at home, would be a genuine boon. There are many conditions where folk need to keep legs/feet raised.

However, cinemas ought to be offering some screenings with lower noise levels, which might be useful to all sorts of folk including so-called fuddy-duddies, those with hyper-acuity as well as some with autistic spectrum issues.

In larger cinemas, it would be good to employ permanent BSL-communicators, so that films could be signed at different times of the day, not just one performance every now and again in an evening slot.

Accessibility

Arts venues, of course in my opinion, need to do far more than pay lip-service and nod towards access for the disabled. A few ramps, lifts, a loop-system and a push-button to open doors are simply insufficient, especially when many of us find the lift out of order, the loop-system off-line, and so on.

All ventures need to attract the largest audiences possible: disabled folk, chronically sick people, and elderly individuals make up a very large percentage of the population. Making accommodations should be designed in to all new construction programmes, from architects (who are still obsessed with using flights of steps instead of clever use of graded access), sound design, use of colour, clear and ample signage, etc.

I should like to see the various arts' councils of the UK's nations insist upon clauses relating to accessibility issues added each time grants are made. I think grants from local authorities similarly should insist upon improved access.

I am no expert on disability issues nor disability access. I observe these issues trying to come up with some common-sense, pragmatic solutions. The reader may have other suggestions or observations: feel free to add them in the comments section below.

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"And now: the Gallery…" an exhibition of art for disabled is also published today for Blogging Against Disablism Day (#BADD2016). The reader may also find of interest a post I published in March entitled "Towards a Theory of Art". 
 
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As per previous years the archive for BADD2016 is being hosted by Goldfish on Diary of a Goldfish and is being administered by her and her hubby, Mister Goldfish. There one can find previous years' full archives as well as this year's as it grows over the next few days. Please do take a look - one is bound to find something that is of interest or piques one's curiosity!