Caña cascada

Caña cascada

balanceándose sinuosamente

soplados por la melodía lánguida

brazos se extienden, forman arcos y capitulan

tocados por la brisa melancólica

miembros extendidos iteran

una vez más repitiendo

oscila suavemente

el cuerpo curvilíneo

en sí mismo una belleza

confluye en movimiento y estación

borrando la distinción

de gesto estético y forma

otra oleada musical

músculos flexionan y estiran

sin esfuerzo ostensiblemente

piernas se alargan

en un salto

aterrizan y hacen piruetas

no resistiendo el tirón

de Cloto la imparable

la danza-Destino incansable

*

seduce todavía

aun cuando la carne está degradada

una atrofia inexorable

a través de enfermedad

dolencia y discapacidad

que cursa el dolor

no se puede apagar

el deseo de existir

en el momento

en la curva, el giro

o la rotación

sincronía espontánea

todavía hay memoria

a veces tortuoso

agradable de vez en cuando

de capricho ágil

de flexibilidad física

de vida en plenitud vivida

Bruised Reed

[Image description: video - final scene from Pedro Almodóvar's Hable con Ella/Talk to Her; choreography by Pina Bausch; music by Bau.]

Bruised Reed

swaying sinuously

blown by the languorous melody

arms extend, arc and capitulate

touched by the melancholy breeze

outstretched limbs iterate

repeating once more

they gently oscillate

the curvaceous body

unto itself a beauty

motion and station merge

blurring the distinction

of æsthetic movement and form

another musical surge

muscles flex and stretch

effortlessly ostensibly

legs elongate

into a leap

land and pirouette

no resisting the pull

of unstoppable Clotho

the untiring Dance-Fate

*

she seduces still

tho’ flesh is now debased

an inexorable atrophy

via ailment, disease and disability

coursing pain

cannot extinguish

the desire to exist

in the moment

in the bend, the turn or spin

spontaneous synchronicity

still there is memory

torturous sometimes

pleasurable occasionally

of lithesome caprice

of physical pliancy

of life lived fully




Si el lector es hablante de español, puede que prefiera mi versión traducida.

The Eugenics Hydra

In an update to my articles on Genetic Discrimination and NAZI Treatment of the Disabled, the menacing threat of eugenics rears its vicious and hideous Hydra heads once again.

Today's Daily Telegraph (a right-of-centre UK national newspaper favoured by the Conservative Party aka Tories) published an article on screening embryos being the moral thing for any parent to do.

Professor Savulescu, a professor of medical ethics, writes that:

"Indeed, when it comes to screening out personality flaws, such as potential alcoholism, psychopathy and disposition to violence, you could argue that people have a moral obligation to select ethically better children."

This is a potentially perilous slippery slope that leads to the weeding out of all non-desirables: the brown-eyed; the homosexual; the ethnic genes of which one is ashamed or despises... Please read the full article if you have the time.

Be very alert folks!

%/

Judgmentalism of Invalids

Screaming. I awake to incessant screaming. But before I can work out the source, I am inundated by excruciating pain all over and throughout my whole body. It is then that it dawns upon me that it is me in agony and that the screams are mine. Except there is no external noise. Like the pain, the sound is internal. I open my eyes. It is still night-time: I can see the amber hue of the streetlight seeping around the edges of the window-blind. I try to lift my head to see the clock, but to no avail. I attempt to stretch out my arm and hand in order to bring the clock to my line of sight, but they will not move either. Gradually I try out various parts of my body to the accompaniment of rising panic, the never-ending pain and the continued screaming. I realise I am totally paralysed, save for my eyes. "So this is death", I think. I remain thus for a couple of days: occasionally lapsing into restless and fitful sleep; only aware of the passing of time due to the changing light conditions within my bedroom. Death. And I am in Hell, and hence the constant torture with no prospect of escape.

[Image description: photo of the manuscript image Hortus Deliciarum - Höhle (Hell) by Herrad von Lansberg, c.1180; folk being tortured in various manners by dæmons.]

It transpired I had caught a virus, a viral form of arthritis, giving me polyarthritis. Unfortunately, this proceeded to ignite my genetic disposition to osteoarthritis. In the fifteen years since that attack, arthritis of one kind or another now effects my left hip (with deferred pain into my right hip); lower spine; knees; ankles, feet and toes; wrists, hands and fingers. I am naturally of a fairly slim build, but there are days on which I swell up to look like a miniature version of the Michelin Man (inflated in all the wrong places!). However I can laugh about the effect these days with those that see me this way.

[Image description: black & white outline drawing of the Michelin man.]

I resumed my career for three months, before another bout saw me finish work permanently - although I did not know this at the time.

Since starting my last job, I had been constantly tired; but found that I did not recover at weekends or even after holidays. By the end of the week I would be limping and having to drag my leg. I was a tad scared, for I had known several folk up to that point who had experienced similar problems and they had all been diagnosed with Multiple Sclerosis (MS). After some tests I was relieved to discover I did not have MS. It transpired I have the neurological condition ME, or Myalgic Encephalomyelitis, sometimes inappropriately and incorrectly referred to as Chronic fatigue Syndrome/CFS.

All in all, I suffer from some eighty (not eighteen) conditions and/or serious symptoms. I have to keep a spreadsheet to keep track of them. These fluctuate: some with the time of year; some with the weather; some from doing activity; some from lack of activity. No two days are the same. I never know what admixture I will awaken to nor how any day will pan out.

The amount of sleep (and I am not talking about the kind of restful slumber that leaves one feeling refreshed; but rather the kind that is fitful and leaves one feeling drained); the amount of sleep I average each night has increased from twelve hours, ten years ago or so, to fourteen-and-a-half hours currently. Unfortunately, there is no pattern to my sleeping. I cannot even always predict when my body might decide it needs to rest. One specialist has described my need to sleep as “narcoleptic”.

My mobility over time has also reduced dramatically. Over sixty percent of the time I am bed-bound. On really good days I can walk with sticks and a companion. In-between times I sometimes can use a mobility-scooter and sometimes a wheelchair I propel myself, though more often I have to be pushed. I can rarely climb stairs, so more usually have to crawl up them.

My current main consultant has forbidden me from swimming and recently also from walking more than one hundred metres at a time. Furthermore I can no longer do yoga, tai chi, ærobics, cycling, gym, hiking and especially dance.

I have lost my ability to read for periods of between two months and a year. I have developed dyslexia. I have difficulties concentrating and frequently forget what I am doing. In my previous home I was advised to have the gas cooker cut off to prevent me from burning down the house! At the moment I have care-workers to supervise my culinary exploits.

Blood tests, x-rays, CT scans, MRI scans, monitors, examinations. Specialist to specialist. There is nothing much that can be done for me. Though my current GP and consultant are doing their best for me, I know, and I appreciate their efforts. I have tried all sorts of drugs off-licence and am willing to try others. I have offered to go on any trials or experimental treatments and have done so in writing not just orally. I should dearly love to retrieve my old life: to work again; to socialise whenever I wanted; to dance. To dance again.

Most days I have to decide between eating or washing as I do not have the energy for both. For someone who was very OCD, not cleaning is a personal nightmare. Not eating has worse ramifications.

Fourteen years ago I was retired on the advice of my then specialists and the occupational health team of my (large) employer. No-one in the know expects me to work again, well bar some miracle-cure or wonder-drug.

Apparently the Government thinks that only about thirty percent of those that were on incapacity benefit (IB) should actually be on it. So I and just about every other disabled person I know lives in constant dread of the brown envelope that advises us we are going to be re-assessed. I have no issue with the authorities checking that benefits are still needed. I have no issue with the Government trying to encourage folk to work if they can. Unfortunately the system they have is not fit for purpose. Their independent adviser publicly stated that the system is not working in all areas of the country. Tens of thousands of folk are having to appeal and many are winning. In the past, twice I gave up my right to some benefits because I was too unwell to appeal. When I finally did succeed I was awarded the highest of three rates, which rather demonstrates that I really ought to have been awarded the lowers rates previously, as my condition deteriorated gradually. I imagine that really sick folk are just giving up and so many do not bother to appeal.

There is also a separate benefit called disability living allowance. It is not an out-of-work benefit (although the right-wing media and even Government ministers conflate it with IB which is an out-of-work benefit), but rather is meant to compensate the disabled person for the extra costs involved in doing activities that non-disabled folk take for granted. For example, were I to meet a friend in the city centre it would cost me the best part of £30 in taxi fares rather than £5 to use the tram (inaccessible to me). Many disabled folk cannot prepare their own meals so have to purchase ready-made foodstuffs, which are more expensive. And so on...

[Image description: black cab or hackney carriage.]

So occupational health say I am incapable of work (not just the job I did). Various medical personnel, including doctors and specialist consultants say I am incapable of work (not just the job I did). Even the Government thinks large numbers of disabled folk will never work. Despite all this, with no medical expertise, with no occupational health expertise, with no evidence, without even knowledge of one’s personal circumstances, some of the public, and especially the right-wing media, insist that I am capable of doing some work. Those in this category always back up their assertions with everyone knows someone who is cheating the system. Well, if they do know someone, surely it is their civic duty, as they are so keen to save taxes, to report the alleged fraudster. There is a Government hotline for this very purpose. Interestingly some ninety-seven percent of the so-called cheats have been found to be genuine claimants.

I, along with many other disabled folk, have paid high levels of National Insurance (NI) in the past, along with our taxes. The State took the money promising to support us if one’s health deteriorated or one found oneself in straitened circumstances, i.e no money on which to survive. But even those who have not paid tax and/or NI, ought to receive assistance in a civilised society.

The politics of envy is divisive and cruel. It’s about time politicians grew up and behaved like the exemplars they are supposed to be. It’s about time individuals grew up and educated themselves. Judgmentalism is not pretty and it certainly is invalid.

In/accessible Europe (3): Manchester's Gay Village

For Blogging Against Disablism Day, BADD 2012, I wrote an article entitled “Sexual Eunuchs?” (q.v.) looking at what it can be like being both disabled and queer. In said article I referred to Manchester’s Gay Village quarter and stated that I never saw disabled folk out and about there, save for the deaf. I thought it time to gird my loins and check out some accessibility issues when I went to commemorate “Alan Turing - A Gay Hero” (q.v.). After doing so, I was in need of a drink and the toilet, in that order.

All the venues opposite the entrances to Sackville Park on Sackville Street had short flights of steps in order to enter (either outside or inside), so thus rendering them all inaccessible.

As it was almost empty on the lower side of Canal Street, I allowed myself to be pushed in my wheelchair along the road.

Bar Below was in a basement down a flight of stairs - inaccessible.

Villaggio was up a short flight of steps - inaccessible.

Eden was across a bridge and down a flight of stairs - inaccessible.

New Union Hotel has a step up - inaccessible without assistance.

Manto had flat access - accessible.

[Image description: the writer in his wheelchair outside the flat entrance to Manto.]

It had been more than a decade since I had last been to Manto. At that point I was still ambulant. Whilst sitting in my chair at the bar, I held a note of the realm in my hand, the bar-lass enquired of my companion as to our order. I promptly chirped up. And the lass apologised unsolicited, thus negating any ill-feeling.

[Inage description: the author enjoying a chat & a drink inside the bar.]

We took our drinks and settled down for a natter, but before leaving I wished to use the WC. I wheeled myself to the bar and enquired whether there was a disabled toilet. A gentleman disappeared behind a door and eventually re-appeared with a key. Unfortunately a fruit-machine and a cash-machine were located opposite a pillar, so it took me a multi-point manœuvre to navigate the obstacles. The chap opened the door and immediately vanished. Another twenty-odd-point turn was required. There was no handle on the inside of the door, so I had to twist (painfully) behind me and exert pressure near the hinge to get the door to gradually pull towards me. I managed to effect my ablutions, but was unable to wash my hands as there was no soap and nothing with or upon which to dry one’s hands. Then I had the difficult task of reversing out and turning in a very narrow gap. Thankfully a young lady came to my rescue otherwise I may have been there for some time.

Whilst I am thankful that Manto’s was accessible and had a disabled WC, as my account elucidates, the toilet was not really accessible without assistance.

This experience prompted me to see whether an internet search might suggest any useful information. I inputted “disabled Manchester” which gave me accessible hotels, but not bars and restaurants. Then I tried “wheelchair accessible Manchester”. This returned no useful data.

Next I thought an enquiry or two on the official tourist information site for Manchester would surely throw up some positive results. Unfortunately www.visitmanchester.com has no specific disabled or accessible section. The exact same seven results were returned in a search using “disabled” and “disability”. The term “accessible” was so broad that it resulted in a large number of useless links.

Well, I thought, surely the Lesbian & Gay Foundation’s site, www.lgf.org.uk, would lead me to what I was after. Similar to Visit Manchester, there was no specific section and search results returned no useful data on accessible venues in the gay village. I have read through LGF’s “Promoting Equality” document (q.v.) and find no direct mention of sub groups of LGBT folk, such as the disabled, race, gender. However, I note that they intend to “Conduct an innovative programme of research to identify the needs of LGB(sic) people.” I do hope that includes finding ways to communicate with queer folk who cannot access the village.

All in all, I am quite saddened, frustrated and, to be honest, ashamed that Manchester does not have readily available and up-to-date information on disabled-accessible venues and preferably broken down into types, such as wheelchair-users, mobility-impaired, etc. If the information is there - somewhere - it needs to be more overt. Such information would be a boon to Mancunians as well as visitors and tourists.