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.

Spain for the Elderly, Disabled and Infirm?

This past week the wonderful disability & welfare rights advocate, Sue Marsh, blogged about a great idea she had and which was supported by several well-known economists. See here for more details as it is well worth a read.

The article prompted me to add my two pennies worth:

Criquaer 2 July 2012 20:38

I've been going to Southern Spain for more than a decade for my health on GP's advice. In a similar vain, I do not understand why Govt./LA's do not send well-ish elderly/disabled to Spain to be cared for during the winter - cheaper than costs in UK, less need for fuel allowance, carers, meals-on-wheels, etc. Also benefit from better climate and social activities - thus less loneliness. I believe Germany & Denmark (???) send some folk there to recuperate.

[Image description: the author shuffling along the esplanade in Benalmádena, Andalusia.]

More than a decade ago, my then G.P. advised me to winter in southern Spain for health reasons. My osteoarthritis (inter alia other conditions) is greatly affected by Manchester’s (north-west England) damp climate to my detriment. This results in my not being able to walk and so needing to use a wheelchair, and, worse from my perspective, being confined to my bed for approximately two in every three days. Being bed-bound unsolicited is no slacker’s dream; but rather a Kafkaesque nightmare of imprisonment within the same four walls and exile from social contact (well, prior to facebook anyhow!). Despite the current Government's media approved scrounger narrative: no-one in their right mind would willingly choose this as a lifestyle. However, once in Spain my condition considerably ameliorates as it does for many OAPs (retirees) who also winter there themselves.

The Conservative-Liberal Democrat coalition is desperate to find ways of saving money. Spain is desperate to create jobs and boost its economy.

I suggest that Britain sends those of its elderly, disabled and ill-health sufferers who are willing and able to Andalusia during the autonomous region’s off-peak tourist season, roughly October to March. The Junta de Andalucía could co-ordinate consortia consisting of hotels, medical establishments & town councils to bid for contracts and/or they could calculate a fair rate to charge the UK Government or individual local authorities.

The advantages to the UK might include:

A reduction in excess winter deaths;

A reduction in the need for winter fuel allowance;

A reduction in CO2 emissions due to reduction in energy use;

A reduction in water use;

A reduction in winter pressure on the NHS;

A reduction in the need for ‘flu jabs;

A reduction in the need for (humane) social care;

A reduction in the need to import foodstuffs;

A reduction in the number of travel journeys made & use of public transport, thus reducing stress on the transport infrastructure;

A reduction in the need for meals-on-wheels;

A reduction in the demands on the charity sector;

A reduction in the workload of social services departments;

A reduction in crime against the person;

A reduction in loneliness for those sent out to Spain;

An increase in health & well-being for those sent out to Spain;

An increase in employment and/or job-security in the airline industry;

An increase in employment and/or job-security in the policing/security industry.

Disadvantages might include:

An increase in property crime;

A reduction in spending locally.

The advantages to Andalusia might include:

An increase in hotel room occupancy rate and thus income of hotels;

An increase in employment and/or job-security in the tourism/hospitality industry;

An increase in spending in the local economy by those sent out to Spain;

An increase in spending in the local economy by those newly employed and/or retained in employment;

An increase in employment and/or job-security in the medical industry;

An increase in demand for locally- or nationally-grown or reared foodstuffs;

An increase in use of public transport and/or taxis, so supporting the transport industry;

An increase in employment and/or job-security in the airline industry;

An increase in employment and/or job-security in the waste management industry;

An increase in teaching jobs to give all those sent out to Spain the opportunity to learn Castilian Spanish;

An increase in Spanish cultural awareness;

An increase in cultural activities for both locals & those sent to Spain;

An increase in employment and/or job-security in the cultural industry;

An increase in the need for policing/security thus an increase in employment and/or job-security for the security industry;

An increase in well-being of locals gaining employment and/or increasing their hours/job-security;

A reduction in the need for benefits for those obtaining jobs and/or those with extended hours.

Disadvantages might include:

An increase in the use of precious water resources;

An increase in CO2 emissions;

An increase in pollution;

An increase in waste;

An increase in pick-pocketing, muggings, etc.

[Image description: the author on a two-stick day in Míjas, Andalusia.]

I understand other countries have similar schemes: but I believe what I am suggesting is on a scale not previously contemplated. Is it worth a go? Or am I being hopelessly naïf and idealistic?

Disabled and Gay Internet Dating &/or Amity

For the past two months I have been looking into several internet dating and/or friendship sites wondering how would I fare as a gay disabled person. I was somewhat circumspect as I pondered whether I might: be completely ignored; or, attract the kind of folk who only have a penchant for physical deformity, or, worse still, the kind of film (movie) psychos who are only out to get their kicks from murdering me! Yep, my imagination went running away with me and took me to irrational places. Nonetheless, I did proceed... cautiously!

©picturesdepot.com

[Image description: two male British police-officers walking hand in hand openly in a street; the photo appears to have been manipulated.]

Firstly I tried a nationally advertised dating site for men & women, gay & straight. I was quite clear in my profile description that I was disabled and gay. Rather surprisingly I was inundated with requests from heterosexual womenfolk. To me this seemed a tad sad: that these women are so desperate and/or lonely, that they will try to date a gay man, let alone one who is disabled. I do wonder whether other gay men find this or whether it may have been some atavistic mothering-instinct activating due to my being disabled.

Contrariwise, the men my age seemed terribly reticent about communicating: they would just return over and over again to view my profile even if I made first contact with them. The only guy I actually fancied turned out to be a serving police-officer who only wanted unconditional sex. And my attempts at making any friends proved fruitless. I moved on to another site after three weeks.

This time I plumbed for a men-only site for gay/bisexual/bi-curious guys, one advertised in magazines etc. It really was a bit of an eye-opener as every married, non-out bisexual in the NW seemed to pounce on me wanting sex (even though I had not selected that as one of my options), many with rather daring photographs of themselves that I am not at all sure they would have liked their mothers to have seen! Strange how every last one has been after discretion. Not sure a close-up of their member classes as discreet? Just today I had another one pop up - ay! I assume they think because I am disabled, I will not be able to cause any trouble, or, that I am so desperate I’ll take anything coming my way. Who knows?

However, I have made a couple of pen-pals in Spain, one of whom I am now on friendship (as opposed to acquaintanceship) terms. With the latter I am able to practise my Spanish in real-life conversations and I have broadened and developed my vocabulary.

Whilst Spanish chaps have been most amiable, the residents of another European country have been rather more taciturn. The Austrians are known for fiercely guarding their privacy: but one needs to open up a little in order to befriend others. I speak & write Austrian-German but that has not helped. I am left wondering whether the disability-thing is too unæsthetic for them?

Oddly, the most discomfiting experience on said site has been coming across blokes one knows. Perhaps it is just me, but I find this actually socially embarrassing. Outside of the virtual world one would not ignore them if one saw them; but in cyberspace there appear to be no secrets, and I am not certain I want to know the sexual fantasies, inside leg measurements and proclivities of Tom, Dick and Harry.

[Image description: a smiley face icon.]

Finally, about a fortnight ago, I signed up to a site specifically aimed at developing links to possible friends and/or dates. It’s not the easiest system to navigate; not quite intuitive. Still, I gradually worked it out. Not desperately sure of the etiquette either, as different sites seem to have their own norms of behaviour. I have sent out one or two smiley faces; but thus far no response. However, I’m not yet disheartened, as perhaps, like myself, the members do not go on every day. 

I have been contacted again by both straight men & women even though I have again made it very clear I am homosexual (no option for declaring bisexuality). I have politely pointed out this fact and that no umbrage taken if they do not wish to pursue acquaintanceship. Some guy in Africa decided I was not the type of platonic friend he wanted! Another guy admitted his own developing sexuality, and we’ve continued to chat via the ‘net. Well, after all, it’s all about finding others with whom we feel comfortable, I suppose. 

Of the three sites, I feel most at ease in the third as nearly all the folk are disabled physically and/or mentally, so do not have to explain all that. Unfortunately, the number of gay disabled men on the site is very small and then when one narrows down to those of a similar age, there are even less.

I suppose there is probably a need for a gay/bisexual/bi-curious disabled folk’s contact site. If there is one out there, please let me know!