Assisted suicide

Apparently the Meacher Bill is being debated in Parliament as some people call for a change in the law on “assisted dying”. It takes a certain sensibility to decide in the midst of a pandemic that the most pressing task is to help the vulnerable to kill themselves. It also displays a quintessentially British hypocrisy that a year after clapping NHS staff we are now seeking the same doctors to act against their own conscience. Either way though I couldn’t let this lie and so wrote this rather lengthy letter. I have mildly tweaked it in order to protect my anonymity but otherwise it’s verbatim as sent to my MP.

Thank you for taking the time to read this admittedly lengthy email and for your work in Parliament during this challenging time. I write to express my opposition to the legalisation of assisted suicide and to ask you to write to the Secretary of State for Health and Social Care and Secretary of State for Justice on this issue.

As you may know, a small group of MPs and Peers are endeavouring to encourage the Government to reconsider the legalisation of assisted suicide in the UK. I believe that a change in the law has a very strong probability of having catastrophic consequences for the most vulnerable in our society. Perhaps surprisingly I am not going to seek to persuade you to agree with me. It is enough that you recognise that the nuances of this issue are so complex, so clearly unresolved (and I suspect unresolvable), that to plough ahead with a call for a change in the law would be profoundly unethical.

As you may well know, last November the Government rejected a review of the law around assisted suicide. It had been previously rejected by Parliament in 2015, and on numerous occasions before that.

Throughout this email I use the provocative term assisted suicide rather than the preferred assisted dying. That is because the latter term is misleading. Supporters of assisted dying would be duty obliged to oppose the wishes of Debbie Purdy, Terry Pratchett and Tony Nicklinson among others, none of whom were dying.

By chance I attended a Quaker meeting on “assisted dying” last year and was surprised to find myself in the extreme minority among attendees in my opposition to a change in the law. Yet while still being undaunted, even these supporters of a change acknowledged that some members of the public feel now, during the Coronavirus pandemic, is not the right time for such a change. On that point (if on little else) I am in absolute agreement with them.  At present many people are experiencing unprecedented loneliness, uncertainty and change.

The pandemic has shown how terminally ill & disabled people are marginalised, pressed to agree to DNR notices and large numbers of deaths occur in care homes.

Evidence from overseas demonstrates that assisted suicide can never be a ‘safe’ law., Incrementally but inevitably, the ‘right to die’ extends from ‘hard cases’ to a more holistic provision, despite the best intentions of those arguing in favour of mild regulated reform. Belgium and the Netherlands have expanded their provision of assisted suicide and euthanasia to include children. The American state of Oregon has expanded its list of applicable conditions to now include arthritis, complications from a fall, and kidney failure, among other non-terminal conditions.

The latest reports from American states that have sanctioned assisted suicide demonstrate that vulnerable patients have sought to die for fear of burdening their families. For example, 51% of patients from Washington state in 2018 cited Concerns that they would be a burden on their family, friends, and caregivers, should they continue to live, whilst only 4% of patients in Washington that year were referred for psychiatric or psychological evaluation.

More experienced medical professionals in end of life care are less likely to support assisted suicide. In November 2020, over fifty doctors working in palliative medicine and other end-of-life care occupations signed a letter to the Times opposing the legalisation of assisted suicide in the UK. A recent British Medical Association survey found that 76% of palliative medicine specialists opposed the legalisation of assisted suicide, and would refuse to participate in any such procedures. Notably, not a single doctors’ group or significant disability rights organisation in the UK supports changing the law on assisted suicide, including the British Medical Association, the Royal College of General Practitioners, the Royal College of Physicians, the British Geriatric Society, the Association for Palliative Medicine, Disability Rights UK, and the United Kingdom’s Disabled People’s Council.

Setting aside the evidence both anecdotal and fact-based suggesting societies fear of physical disability in general, the much referenced 85% in favour of a change in the law appears to reflect society’s fear that they will suffer inferior treatment if they become sick. On the basis of Covid, the latter fear is well founded, yet the general response has been to want better health & care services.

Rather than legalising assisted suicide, Government and Parliament should commit to improving the quantity and quality of palliative and social care in our communities. Furthermore a Social Care Bill would help the growing number of people with dementia far more than a Assisted Suicide Bill, and confirm that the lives of vulnerable fellow citizens matter. Endorsing suicidal thoughts and attempts would betray our duty under the suicide prevention strategy for all citizens, supported by the Government, Parliament, and broader society. It is a double standard for any community to allow some people assistance in suicide, even as we do our utmost to prevent young people and other vulnerable groups from taking their lives.

A truly humane and proportionate response would acknowledge the sometimes tragic suffering that can accompany the end of life and do everything necessary to care for their needs and alleviate pain in their final days.

I sincerely hope I don’t come across as patronising if I observe that you may well have guessed by now that a good amount of information in this letter comes from a template draft. That is indeed the case and much of the information here has been provided by Not Dead Yet of whom I am a supporter. Indeed there is a possibility that you may have previously received similar letters for that very reason. That I sent this letter in spite of having a journalistic degree is partly out of expediency but is also out of sheer and utter exhaustion.

If you will indulge me for a moment I will tell you about myself. I am near totally blind and have mental illness (OCD). Both conditions are very time consuming and I have endeavoured to keep life and limb together while seeking work through occasional journalism and more frequent stand-up comedy. Three days after my Brighton Fringe show finished I am absolutely exhausted and would prefer just about anything to having to write a lengthy letter about assisted suicide. Yet I don’t think I could live with my conscience if I sat idly by while the lives of very vulnerable people were made even more precarious.

As a widower who lives on his own and receives comparatively low amounts of social care I have no illusion that my life would represent if not exactly many people’s worst nightmare then certainly something nudging in that direction. At a time when I was still partially sighted I recall meeting a woman who told me that she was going blind and would kill herself if she lost her sight. I can empathise with her. At the time when I was still partially sighted I shuddered at the thought of no longer being able to read books, watch movies or see faces.

Yet despite having not received any related counselling nor ever having met an Eye Clinic Liaison Officer in my entire life (except possibly in an informal capacity), I am still here today. That does not make me strong or an inspiration. In light of my mental illness I am actually quite ambivalent about having my sight back but I can tell you that I would dance for joy were my care provision to be increased. The key point here is that beyond the statistics what is at stake here is whether we create a society that helps its most vulnerable citizens to live, or whether it helps them to die. I hope you will, like me, prefer the former.

I would like to end with one point which I have never herd being previously made but which I think makes sense. On a seven point scale with 1 being absolute opposition to assisted suicide and 7 being absolute support, I would place myself at position 2. That is because I have friends who disagree with me or who are undecided. No, I would not wish to occupy position 1 which to me sounds like fundamentalism. If position 5 is mild support but insufficient to require political action, then what is being advocated today is that the Government occupy position 6. What I wish you to consider is the possibility that the very moment assisted suicide becomes legal, society’s position will out of necessity be shunted to position 7 – un-nuanced support. That is because at the very moment assisted suicide becomes legal, the state’s primary responsibility will no longer be to protect the vulnerable (poor, elderly, disabled) who are at risk of being coerced into suicide. No, at that precise moment the people most at need of protection will be the doctors carrying out assisted suicides and the families of those who choose to avail of this service. We have seen from the example of abortion the danger of extremists taking the law into their own hands. Today it’s very hard to speak out against abortion without having to express numerous caveats beforehand and I would not wish for a world where people have to apologise before expressing worry about the ethics of assisted suicide.

As I stated at the start of this lengthy email, I am not asking you to agree with everything that I have written. I actually take a very strong line on free speech (even controversially so) and have endeavoured to practice that in my own life. For example I actually wrote on assisted suicide in 2008 and made a concerted effort to remain impartial. You can read my report here:

http://www.indcatholicnews.com/news.php?viewStory=16968

All I would ask is that you recognise that this is a very complex issue and that in light of  just how unresolved the complexities are, it would be foolhardy even immoral to proceed with a change in the law. Obviously I would hope that you can be persuaded that a change is wrong as a matter of principle but my first commitment will always be to free speech.

To conclude, as my representative in Parliament, I ask that you urgently write on my behalf to the Secretary of State for Justice and the Secretary of State for Health and Social Care explaining why legalising assisted suicide in the UK would be profoundly unsafe. We need help to live, not to die.

Yours sincerely,

Stephen Portlock

Upcoming comedy gigs

Well folks I’ve got good and bad news. The bad news is that for now I have no gigs lined up. The good news is that (woo hoo!) I now have a comedy website http://www.stephenportlockcomedy.com. Do check it out and I’ll list future comedy gigs there.

Blindness

I’m realistic enough to understand what Ralph McTell was getting at in Streets of London when he sang about yesterday’s papers telling yesterday’s news. Even so, it still means something to me for the first time recently having an article published in The Times. Admittedly it was sight loss related and in a way it would be nice to move out of the narrow furrow of sight loss and disability. That is after all what I’ve endeavoured to do with this blog. However as a blind person, I’d much rather have someone who is blind rather than someone who is sighted write about blindness, not to mention Blindness.

 It’s a tad unfortunate that anyone seeking to find out about blindness and entering that word into amazon will first come across a novel by Jose Saramago. Soon after that comes the movie adaptation. I actually have a certain fondness for the latter but I’d still advise that website visitor to move on because either Blindness the novel or the movie risk sending out some very odd messages about blindness.

 That’s partly why I pitched the article to The Times. Simon Stephens has adapted Jose Saramago’s dystopian nightmare as a sound installation at the Donmar Warehouse and I could just too easily imagine a sighted journalist speaking to Simon ‘ “it’s a beautiful novel isn’t it… so compassionate in its gentle humanism”.

 Well not really no. I realise that Saramago is using blindness allegorically but it still does feature blind people literally shitting on the floor. It’s nigh on thirty years since I read Tom Sharpe’s The Wilt Alternative but as I recall it involved a Communist being filmed fucking a model crocodile in order to demonstrate what is being done to the proles. I think Tom Sharpe would share my view that it’s possible to agree with the message while still wondering about the approach taken by the messenger!

I won’t write in too much depth about Communist Saramago’s complex, sometimes ironic allegorical original novel as hopefully I’ll soon have a related article published in Disability Arts Online. I will however divulge a mild spoiler and reveal that, no, no animals real or fake were sexually molested during the course of the novel. There is only the ‘dog of tears’, a curious touch of magic realism who reappears, renamed Constance, in the sequel Seeing. Incidentally, Neither Blindness nor Seeing are without merit but the tonal difference between the two books can hardly be exaggerated. Discovering that Seeing is the sequel to Blindness feels a bit akin to spotting a reference to Pasolini’s Salò, in one of the Lego movies.

Blindness concerns ‘the white evil’, a pandemic that rapidly sweeps through an unnamed city causing people to suddenly lose their sight, finding their vision completely blocked by an unbreachable wall of pure whiteness. Panicked, the government throws the interned into a disused asylum. As the numbers of internees accumulate without a commensurate increase in food supplies, group warfare breaks out with the blind internees in one ward holding the remainder to ransom first for food and then for their women. That any kind of order remains at all is almost entirely down to one sighted woman who has surreptitiously slipped her way into the asylum, accompanying her blind husband, and who has not in fact lost her sight. She is instrumental in helping a group of ‘good’ blind people to fight back and escape.

For sure the idea that blind people would lose all concept of sanitation is pretty distasteful and also rather questionable but to me what is much more problematic is the astonishing lack of nuance in the relationship between the blind internees and their sighted ‘saviour’. Fernando Meirelles movie version was about as good a job as could be managed of redeeming that material with the blind internees coming across as less pathetic and the sighted woman feeling less like a cross between Mother Teresa and Wonder Woman.

That didn’t stop the US National Federation of the Blind complaining about the movie and regrettably I can see their point. I have yet to read any non-disabled journalist writing about either the novel, movie or about Simon Stephens new production who has acknowledged that the source material is in any way problematic. Oh, and before I forget, shortly after the publication of Blindness Saramago received the Nobel Prize for literature!

Thankfully one person who has had the courage and integrity to consider the messages sent out was the earlier mentioned Simon Stephens. With Blindness retold as a sound installation, it largely but not entirely takes place in darkness. The story is told from the point of view of the doctor’s wife, the woman who did not lose her sight.

Alongside Simon Stephens, Professor Hannah Thompson, Blind and Partially Blind Consultant also deserves a big mention. She went through the script making small changes but also contributed an article on what she sees as ‘blindness gain’ rather than ‘sight loss’.

So full marks then to Simon and Hannah for their commitment and also to actor Juliet Stevenson and director Walter Meierjohann. As an immersive sound experience Blindness is really something to behold. I had previous experience of binaural sound from having attended Flight and Séance by Glen Neath. The latter were group performances in pitch darkness designed to resemble respectively a flight and a séance, to make you think and, perhaps more importantly, to spook you out. Those pieces, though excellent, were considerably shorter and perhaps consequently less narratively ambitious. Halfway through Blindness, my sighted companion reached for my hand, and while that may have had more to do with friendship than comfort, she still seemed slightly thrown by the experience.

Well she might be. For those unfamiliar with binaural sound delivered through headphones, the effect is that it becomes multi-directional. In the case of Blindness, you literally become one of the blind internees in the asylum sometimes hearing the sighted woman moving about shouting, even baying for blood, and at other moments you become the figure of her husband as she gently whispers into his ear to let him know what’s happening.

As an actual adaptation of Saramago’s novel though it’s probably less successful. Encouraged as I was by the conversations with Simon and Hannah I did wonder whether too much of Saramago’s novel might have been discarded. True I find much of it deeply probblemmatic but I also do take a pretty strong line on free speech. Thankfully my fears proved misguided and while parts of the story are omitted, there are no obvious changes to Saramago’s source material.

However if I liked the movie precisely because Julianne Moore’s sighted woman did not come across as a superhero, then regrettably Juliet Stephenson does slightly come across that way – a fact near unavoidable by dint of the fact that she is the narrator. The single person narration also means that the gang rape scenes can only be hinted at and consequently lose some of their power. More troublingly, the rare occasions on which the blind people do show initiative end up being omitted. For example, in the novel, unlike in this production, one particular blind woman is instrumental in helping the group to escape. Also completely absent is a brief but touching sub-plot involving the unexpected blossoming love between two of the blind internees.

Overall then Blindness is probably more successful on a technical level than as a retelligng of Saramago’s novel but I am glad that it happened, for two reasons. Firstly it shows that stories can be told in very powerful ways that do not primarily rely on the visual. Secondly there is at least reason to hope that it will encourage creative artists to consider the ramifications of using disability as a metaphor.

Right on!

Apparently the leader of Anglicans in Nigeria Jonathan Okoh, , will boycott next months’ worldwide meeting of Anglican leaders. This is because of his perceived lack of progress over the issue of sexuality.

Oh good” was my initial thought. Post-Brexit Britain is already suitably awash with blinkered bigots so don’t worry, I think we’ll survive without Nicholas!

Yet I know that were I to meet this man, I would be polite and respectful towards him. Partly that is simply out of commonplace good breeding and it’s also partly out of a desire not to be perceived as a racist. Yet it’s also in part out of desire not to be seen as a hypocrite. When a few months back I found myself discussing the alarming levels of homophobia in Uganda, I was gently ticked off. Don’t forget, I was reminded, that it’s not been all that long since homosexuality was illegal in the UK.

Well no and thank God we’re more enlightened now, but when radio 4 announced a series of programmes on gay icons to coincide with the fiftieth anniversary of the legalisation of homosexuality, I didn’t just groan internally but did so externally as well. To be fair, I had forgotten about the anniversary and thought it was just meant to coincide with LGBT pride. That event took place a fortnight previously, I wanted to shout out at the radio. Last week’s celebration was of disability culture. When, if ever, are you, the BBC, going to celebrate that one?

So while I don’t share his politics, I do find myself in uneasy agreement with a good deal of what Professor Roger Scruton said in a recent talk. The European Fundamental Rights Agency is seeking to include everything on the radical feminist and LGBT agenda. European civilisation is marked through and through by its Christian heritage, and in its three cornerstones, forgiveness, repentance and natural law – the free and sovereign individual. Yet European institutions have consciously discarded these Christian moorings in favour of individual rights.

Well I’m far less learned than the estimable Scruton but his arguments do ring true. I found myself wavering back and forth over the issue of Ashers Bakery, but not over the appalling hounding of Tim Farron. Personally I can’t find any coherent reason to oppose gay marriage but I don’t see why Tim should be forced to unequivocally support it.

Scruton’s comments came from a recent edition of A Point of View entitled The Religion of Rights on radio 4 and I strongly recommend giving it a listen. A well structured argument is always a pleasure to hear and this one was truly excellent. The suspicion that he was leapfrogging on the success of Douglas Murrays’ confused, confusing, vastly inferior and just faintly sinister The Strange Death of Europe: Immigration, Identity, Islam should deter no-one from giving this 9-minute talk a listen.

I have read Murray’s book and if time permits, I’ll write about it on this blog but for now I’d like to make some qualifiers to Scruton’s arguments. Firstly, I think Scruton actually underestimates the sinister implications behind this drive for rights over responsibilities. It’s not coincidental, I would suggest, that religious people have been represented as ‘the bad guys’. Of course innumerable Christians including Quakers, Unitarians, Episcopalians and simple moderates are in fact not opposed to gay marriage. Yet facts are all too easily discarded by secular fundamentalists who are only interested in their religious counterparts. If you, member of the public, dislike religion then you are duty bound to support the LGBT and feminist agendas.

Yet there are other agendas that need to be borne in mind. While ‘religion’ has been hounded for its history of misogyny and homophobia, Humanism has largely got off scot-free when it comes to its uneasy relationship with eugenics. I’m quite sure that the BHA would adamantly deny that they have any animosity towards disabled people but the lack of nuance in their unequivocal support for assisted suicide is truly chilling. Thankfully, unlike them, there are people (not all religious) who do think that the very strong opposition to assisted suicide among disabled people counts for something

Later on Scruton bemoans the inclusion of non-discrimination as a human right. Well yes there is folly in refusing to acknowledge that women may be better at some things and men at others, but it’s also true that there really is gender inequality when it comes to pay. Where disability is concerned, the relevant statistics when it comes to discrimination in the field of employment are truly sobering. “When offering a contract of employment” a place in a college or a bed in a hospital, writes Scruton, “you are commanded not to discriminate on grounds of race, ethnic group, religion, gender, sexual orientation and so on”. I think that’s a bit over-simplistic but did you notice what is missing? Today it’s disabled people. Half a century ago it was “no blacks, no Irish, no dogs”. Discarding the fight for rights only works provided you have the upper hand, or have at least reached a certain level where your life is endurable! That’s why Martin Luther King Jr didn’t call for his black brothers and sisters to behave more responsibly!

The final part of Scruton’s talk moves into much more similar territory to that of Douglas Murray but without the luridness. Because of our fear of discriminating, we tolerate the intolerant. That would be a problem were I to meet the Primate mentioned at the start of the article but it’s a clear and present problem when it comes to Islam. For albeit different reasons both Scruton and many Muslims dislike the shallowness of our liberal rights-based society.

“I see no alternative”, concludes Scruton, “other than to recover the real source of our rights and duties in the Christian discipline of neighbour love and its three cornerstones of repentance, forgiveness and natural law”

Well I wouldn’t be quite so hasty to discard ‘rights’ but I do suspect that Scruton is basically correct although I do wonder what his vision would look like, since I don’t believe that Scruton buys into the literal truth of Christian metaphysics. To me, ‘rights’ work only as long as other people don’t get physically harmed. If you’re Jewish and are automatically distressed by any criticism of Israel then you are over-sensitive. However if you are indifferent to the danger to the lives of disabled people when asserting your right to choose the moment of your death, then you are callous and possibly sinister. Lastly, if you favour some abstract concept of national ‘identity over compassion for the suffering of others overseas then you are callous, possibly sinister and, just to be clear, un-Christian.

Just… hold… on

With the fingers of one hand parted in order to hold the tube of the toilet roll in place, I used my other hand to unfurl a spool of toilet paper. Then I tore it off, dropped the roll to the ground, and used this paper would-be glove in order to grab hold of a soap dish. I prized it open and tossed the enclosed bar of soap into the shower. Then I let the soap dish drop into the sink and threw the potentially contaminated toilet paper into the toilet bowl. I grabbed hold of the cardboard container for a new bar of soap and prized open its contents, making a mental note to throw away the box. Then I used this bar in order to vigorously cover my hands in a frothy residue. I rubbed this all over the inside and outside of the soap dish and then a thought crossed my mind: This is crazy! I’m getting myself into a lather over nothing!

I may have made it last time in one piece, and in fact one of my closest friends felt that for a few days afterwards I was practically walking on air. Yet the fact remained that the thought of returning to Dhamma Dipa which I had first visited in 2015 (see Full Bodied Armour) filled me with acute dread. There was not a flicker of doubt in any part of my mind that I absolutely needed to return but even so that knowledge still left me in a state of anxious depression for a good fortnight prior to the day that I set off.

It didn’t help that I was warned by the teacher, soon after my arrival, that second time around it can be a very different experience. That’s as much as to say that it doesn’t’ get easier… it gets harder!

Come the afternoon of day one I was certain that nothing but nothing would make me quit. Come day 4 I was prepared to say ‘so long Sergeo! It was good knowing you!’. That wasn’t because I wanted to leave but because I feared I would be kicked out. This was the point at which Anapana Sati meditation (focusing on the breath) gave way to Vipassana which is to do with body scans and, more to the point, strong determination. That means resolving not to move for anything, be that at a mild tickle at the end of the nose or a desire to change posture after my leg started throbbing and propelling itself up and down. As an Obsessive Compulsive I could see real value in this practice, particularly late at night when my mind goes haywire, but please God was there no other way? Returning to my room dejectedly I wondered why I couldn’t do like most people and spend holidays licking ice lollies and staring at the sea. On the other hand, if spirituality had to be my bag then why couldn’t I just do like Tina Turner and Herbie Hancock and chant Nam Myoho Renge Kyo for hours on end while thinking of a Volvo!

Back in 2015, on my first visit, I had absolutely adhered to all the rules about noble silence and for good reason. I knew from personal experience that when trying to tame the monkey mind, that a little goes a very long way in terms of distraction. I clearly recalled the first time that I ever went on a silent retreat, that one at Gaia House in 2014, my assistant, a fellow visitor, had when taking me for a walk quietly observed: “nature is beautiful”. “Tarmac the lot!” I had wanted to reply.

However returning to Dhamma Dipa, back in 2015 both my sighted assistant Saul and I agreed that we were talking too much. Basically I was seeking too much in the way of reassurance. Every other time my crazy OCD mind started fretting about something, I tended to give in and to seek reassurance. No, soap isn’t toxic! No, even if a drop of urine touched your lips, you won’t’ die! This time around my sighted assistant was Sergeo, and he spoke less English, but even had that not been the case I would still have been determined to avoid such embarrassing questionings. That was what led to the lather-y situation alluded to at the start of this article. I’ll spare your blushes as to the reasons why I felt it was necessary, but come day 6 I found myself obsessively ensuring that no detergent or anything else associated with the inside of toilets such as semen or shit had found their way onto my soap.

I must confess that I have some misgivings about Vipassana and I’ll try to write about them in a second posting. Yet this visit to Dhamma Dipa was still pretty rewarding and I continue to suspect that it’s the Rolls Royce of retreats. It seemed considerably less spiritual this time around, maybe because lunches were consumed at a gobble and walks were invariably brisk. I may have taken the title of this article from the heavy metal scream of a memoir that is James Frey’s A Million Little Pieces, and that phrase definitely helped me during those ten days, but I think those wizened philosophers Neil Tennant and Chris Lowe were closer to the mark when they wrote The Samurai in Autumn. I think the Buddha would approve!

Here I go again on my own

I quickly locked the door of my room after taking an even quicker mental inventory to check that I had everything that mattered – keys, mobiles, and the trusty if not altogether reliable Trekker Breeze – a sort of SatNav for blind people who haven’t yet mastered their smart phones but which has an unfortunate tendency to live up to the dream of Bono and the boys. In other words all too often when using that device I find myself in a place where the streets have no name. Now all I needed to do was head to reception, book a taxi and hopefully I should make it to the theatre on time. Then I swung around and realised not only that I didn’t know which way it was to the reception but that I had already walked away from my room and didn’t know the number where I was staying.

 

That may not have been my finest hour, but I still think that earlier this year I may have passed a milestone of sorts in my journey into sight loss. I’m rather wary of saying as much since there’s a real danger of giving undue prominence to the significance of my blindness, or of reinforcing the medical model of disability, but on balance I’m probably guiltier of doing the opposite – of understating its significance. For example I hadn’t written about it on this blog because I actually found the experience a slight disappointment but back in 2014 I went to Gaia House not once (see my posting Children of Gaia) but twice. The second time was for a retreat on the theme of ‘Living with illness and loss’ and in my mind I substituted the word ‘illness’ with ‘bereavement’ and so left Gaia House five days later feeling a little short changed. However one thing that was brought to my mind not for the first time was my bloody minded reticence to acknowledge that not being able to see can be at times very hard indeed. During the course of those five days at Gaia House took place what are probably best described as art therapy sessions and they were really not for me who just wanted silence and more silence – much like I got back in March. In one session we had to create an image of loss and unsurprisingly I thought of Fanta, my late wife, and on creative frustrations. However it never even crossed my mind to draw on my experiences of going blind and I was quite shocked when I subsequently noticed this omission.

 

Of course I have always had Retinitis Pigmentosa and for most of my life I have had night blindness and a narrow field of vision. However in terms of the central vision going increasingly pear shaped until my current state where I can see if the light is on and can vaguely sense commotion but really can’t make out detail at all – well that change largely started around 2005. That was a rather turbulent time in my life. I was receiving psychotherapy for various things in my life and unfortunately I don’t think it was helping much if at all and was at a push even possibly detrimental. On top of that, the Home Office were breathing down Fanta’s neck and while we were already engaged, the pressure put on us didn’t exactly help. So with all this internal turbulence there wasn’t much time for me to feel very much as my central vision gradually fizzled away.

 

So when two months ago I packed my bags and prepared to whizz off to Edinburgh for a weekend break and to attend the festival it didn’t seem all that much to me. True I would only be spending about three days there, taking an overnight coach on Friday and another one on Monday morning. Besides, I would be spending a few hours on Sunday with my friend Saul whom I met at Dhamma Dipa (see Full Bodied Armour). In truth I was more scared from an OCD perspective since I am still prone to anxiety attacks in the later half of the evening. I also wondered whether it might prove emotionally distressing given that Fanta and I had been to this city on at least three previous occasions – including when we first got engaged. Yet a blind friend of mine told me that she wouldn’t go to Edinburgh on her own so, yes, maybe I was showing my cojones after all.

 

I prepared well in advance visiting the travel agent to find a hotel that wouldn’t be back breakingly expensive and then perusing the Edinburgh Fringe website to find out what was going on. It might not be for everyone but somehow spirituality does seem to have been my own way of preserving mental calm so I also googled Edinburgh Quakers and Edinburgh Unitarians to find the address of their respective places of ‘worship’. The morning I was due to depart, a sighted friend helped me to shop for goodies to nibble on during the journey and in the evening another friend helped me to pack. I’ll readily admit that for some blind people, throwing everything into the case, locking the case, locking the flat and buggering off might not be much of an issue but blindness and OCD isn’t the easiest of combinations and I did have a brief moment of panic on failing to find something before my friend calmed me down and assured me that, yes, I would make it for the coach and that, yes, everything is off in the flat.

 

Not that even then I was wholly reassured. Sitting on the coach in Victoria Station and waiting for it to leave I started wondering whether the driver had understood that I also had a suitcase alongside the backpack at my feet. Attempts to get his attention were fruitless but more to the point I had enough self-awareness to realise that he probably had more than enough on his mind and that my friend Stuart waiting outside would hardly push off without checking beforehand. So I would just have to live with that mild risk.

 

As for Edinburgh itself, I would just have to ‘wing it’, and to be sensible, accepting help when it was offered. That was precisely what I did, and the help offered and received included that from someone whose job was, as I understood it, to supervise the street performers. I initially just wanted to be on my own but finally relented and allowed him to accompany me for an hour or two as we chatted and made our way down the Royal Mile. The second day, I was with my friend and as for the last day, I just took a taxi to one of the main comedy venues and then wandered around for a few hours while being careful not to stray too far.

 

In fact the only real challenge came not when I was outside but when back in the hotel, alone in the dark and in the darkness of my crazy mind. That was the time when I found myself repeatedly phoning the reception – about the tea-making facilities, about the time of breakfast, about the location of certain things in the room, and about any other things about which my mind could worry. I always suspected that it would be principally my OCD rather than my blindness that would hamper me during the holiday and I was basically right, even if I was still able to enjoy the break.

 

So that was my first experience of going solo in some while. It was a good deal less emotionally turbulent than I might have expected. Fanta was certainly in my mind, but then again so were my friends from back home. I kept social awkwardness at bay and took the risk of accepting help from strangers (thankfully it paid off!), I spent some time in cabs and considerably more time in theatres or comedy venues, or observing street performers. Oh, and now that I think about it with some amazement, I don’t think anyone questioned me about my blindness!

 

I’ll have a cup of tea (and tell you what I’m dreaming)

I don’t know why but somehow life does seem to have been more than averagely cramped as of late and that may have adversely affected this blog. So better late than never I’d like to write about a talk which I attended back in July – and not least because a friend was keen for me to do so.

I couldn’t possibly tell you the most disgusting dream that I have ever had since I would feel embarrassed writing it down even on this blog. Suffice to say that if I ever feel the need to create an artistic vision of Hell then I will almost certainly draw from it. The second queasiest dream that I ever had involved chocolate Easter eggs sprouting out of my body and the icky nature of that nightmare was unsettling enough to cause me to feel a tad nauseous for a day or two afterwards. Thinking of it even now is just slightly unsettling.

The subject of dreams came into my life earlier this year for a couple of reasons. In order to prepare for a review that I wrote of the acclaimed film Notes on Blindness, I re-read John Hull’s memoir Touching the Rock on which the film is based. I have slightly mixed feelings about John though a re-reading of his book has caused me to view him in a slightly more favourable light. However I was struck reading his memoir just how keen he is to interpret his dreams as relating to sight loss. Maybe that really was the case for him but a side of me agrees with Marty Crane from Frasier who in one episode tells his son, troubled by a homoerotic dream, ‘dreams are just weird!’. In other words, I don’t lose too much time analysing them.

Maybe though I should be grateful to The Wellcome Trust who do. In July a sighted friend and I went there for what I assumed would be an audio described tour but in fact was something far more interesting – a group discussion on blind people’s (mostly men it must be said) experiences of dreams. Well it has been said that if you want to teach algebra to Arthur, you need to know as much about Arthur as about algebra, and maybe the fact that only an hour was available meant that there was no time to understand where the participants were coming from ‘internally’. For example one participant who believed in God believed that dreams could be prophetic – a view not generally shared by the group. He appeared to believe that he had literally visited Hell in a dream.

So when it comes to what I personally dream, it seems at least vaguely relevant to say something about my waking imagination. Put simply I find it increasingly tiring to recall faces and find it a real struggle to photographically imagine what someone looks like. All too often when forced to do so my mind either creates a vague animation drawing or goes full-scale abstract. So when, in late 2013, I sat beside the bed of Fanta, my dying wife, I could obviously not see her and on occasions I imagined the form whose hand I was holding as being that of a little mouse. It is slightly distressing to me to know that the visual picture that I have in my mind of a particularly close friend of mine is almost certainly wrong and try as I might, I haven’t so far managed in my mind to replace it with a more accurate portrait.

Yet in spite of that, I still all too often dream ‘sighted’. Unlike John Hull I don’t think I ever in my life dreamt about my sight ‘coming back’ although I have on occasions dreamt about remembering that I can in fact still read standard print (uh uh! Not true!).

Maybe that is because I never envisaged my sight loss to be a drift away from ‘normality’. I hope it doesn’t sound self-pitying if I state that having experienced several years of bullying when at school and a sort of internal bullying through my OCD, I am in no illusion that it will take a damn sight more than restored vision to make me ‘normal’. Besides, when someone at a Quaker meeting recently asked me whether I had ever had normal eyesight, without a hint of anger or offence I asked him to define ‘normal’. Few ‘sighted’ people have full eyesight after all.

Well, that’s enough about me. What about the other participants? One of them stated how when he finally lost the last remnants of his sight, he looked forward to going to bed where he would be regaled by amazing, super-technicolour dreams of fully sighted adventures, some of them suitable for public consumption! Something similar is experienced by Gabrielle, the wheelchair using lead character in Liz Jensen’s novel The Rapture.

I can’t say I’ve experienced ‘naughty’ dreams of that sort although in the rather good film Black Sun, the narrator Hugues de Montalembert does state how his imagination went super-erotic after his sight went. Too often my dreams have revolved around me missing or narrowly avoiding missing an appointment or my getting lost or narrowly escaping death. I had assumed that was just my mind’s way of giving me a hard time and telling me that I’m going nowhere but in fact it was suggested in the discussion that there may be a more benign interpretation. Basically, it is the mind enabling the dreamer to prepare for future challenges, even if that entails them going wrong. My first thought was that I have a super Stoic brain but, no, the challenge in the dream might not be the one relevant to our external reality. In other words it’s to encourage fortitude. That would explain how two participants at the event had work anxiety related dreams concerning jobs that they had stopped doing long ago.

The other thing about my own dreams is that they are based as far as I can recall only on sight and hearing and not on other senses although I still recall a dream earlier this year in which I found myself above a busy road and fearing that if I put a foot wrong then I would plummet to my near-certain death. I couldn’t say with hindsight that no other senses kicked in during such a scenario – I just don’t remember them doing so. Yet another participant, born blind, said how in his dreams all senses except sight are involved, and I am reminded of a story that I heard years ago from a man born totally blind of how (as I recall) after a bad drug trip he imagined Braille letters physically closing in on him! I can’t say whether smell was included in that particular ‘bad trip’ but according to our hosts at Wellcome Trust, smell is the least noted of the senses when recalling dreams, even among sighted people. That’s not because the dreamers didn’t smell anything but because in a hyper-visual culture, we aren’t accustomed to pay so much attention to fragrances.

Returning to sight loss, one attendee said how in his dreams he is fully sighted but sometimes still carries a long cane. I can’t say I’ve done that but as stated earlier, I’ve had a fair few ‘partially sighted’ dreams.

So how can we as humans analyse dreams given how personal they are? The answer was not provided at the end of our session but it was made clear that it is not just humans but also animals who are subject to dreams. Scientists found out that fact through a regrettably rather cruel experiment. The parts of the brain responsible for paralysing them during REM were removed from a sample of cats and consequently they acted out their dreams – hunting, catching mice, running etc.

The evening ended with a discussion on sleep paralysis which I thankfully haven’t experienced but which my sighted friend who accompanied me had in fact experienced. I don’t envy her for that but I’m glad to her for accompanying me to this fascinating talk.

Deva Premal

About ten years ago I did a screenwriting course. One of the ideas that I toyed with was a family film about two young boys who go off to meet Tony Blair. They want to meet him in order to request that the Dad of one of them can be sent back from Iraq since Mum is feeling lonely and depressed. Trouble is that Tony, Cherie and their family are all away on holiday with Madonna and Guy Ritchie and are all but unreachable.

Well not much came of that particular project though if you like the idea and want to collaborate on it then just let me know! However I still like the idea of the Blairs schmoozing with the Ritchie’s and to me that rings true. I can’t exactly imagine myself globetrotting with Marc Almond or hanging about with those noisy boys from Sunn O))) except possibly in my dreams.

Yet there are two singers with whom I can very easily imagine myself holidaying and no they aren’t ocean liner crooners. A couple of times a year Deva Premal and Myten actually invite their fans to join them on chanting retreats.

I have to state that I haven’t been on one of their holidays. I’d love to do so but I’m not altogether sure that my idea of fun is the same as that of everyone else and I suspect that after spending inordinate amounts to go an inordinate distance to a distant climate, many people would prefer sightseeing, swimming and sunbathing over spending hours cross-legged on a cushion chanting ancient mantras and seeking spiritual calm.

Also, these holidays aren’t exactly given away for free any more than was the tickets for the concert of Deva Premal and Miten that I attended at the Union Chapel in June. I also suspect that Deva Premal and Miten might well baulk at the use of the word ‘fans’ to describe people who enjoy their music since on the basis of that show the couple do seem refreshingly free of ego, despite having over twenty recorded albums to their names, and I’m ready to give the benefit of the doubt that their spirituality is sincere. Quite honestly, I can’t remember attending any musical performance that so conspicuously blurred the line between concert and service of worship.

I first heard about Deva Premal through OM chanting. Somehow a recording of an OM chant on YouTube that I was listening to while working segued into a two hour version of Deva chanting the Gayatri Mantra. The first time I heard it, I thought it was nice, second time around it was stunning. I still stand by the latter verdict.

True some detractors find Deva’s music just a little too sugary for their tastes and others have maintained that her pronunciation of the words in the mantras that she has made her hallmark are not always accurate. Ironically, in her favouring of the sound of words over their strict grammatically accurate pronunciation, that places Deva alongside a very different spiritual diva, namely the brilliant but deeply disturbing Diamanda Galás.

There was however nothing scary and quite a lot that was soothing about this evening with Deva Premal and Miten. I guess that her music broadly draws on Hindu and Buddhist traditions but with audiences invited to sing along to Amazing Grace in the second half (with the word ‘wretch’ politically correctly replaced with ‘soul’) it was clear that God is not being defined according to any particular credo.

The concert opened with the audience being invited to participate in an OM chant and soon after that Deva started singing mantras with the audience invited to join in. Maybe it was also down to the surroundings, Islington’s Union Chapel but the sheer beauty and holiness of the music made it feel a little impolite to allow in more mundane thoughts about matters of everyday life. At the end of each individual piece, all that I could do was sit in stillness, calm and equanimity. Halfway through what turned out to be a surprisingly long show was a twenty minute interval, and it seemed a little short of impolite to do anything else but to continue to sit in contemplative silence. To put it mildly that response of mine did not appear to be shared by others. The moment that Deva and Miten stopped singing, audiences bustled around and started garrulously yammering away to one another. Well I guess that in Hinduism spirituality is inseparable from everyday life!

I have to say that I got less satisfaction from the songs of Miten, her partner. Sung in English, they seemed with hindsight just a little too hippie-ish for my liking, despite the fact that he displayed a pleasingly dry sense of humour during his exchanges with the audience. Yet even there, swept up in the emotion of the event, it felt wrong not to suspend cynicism for those two or three hours.

Funnily enough I only heard about the Deva Premal concert by a happy stroke of chance. Listening one day at work to the Gayatri Mantra while working I happened to peruse Deva’s website on a whim in order to find out if she ever visits the UK. On discovering that she was performing that very evening I let out language more suited to the Civil Service before blushing and apologising to my colleagues. When I mentioned this story to the woman sitting next to me during the course of the interval she informed me that there are no coincidences – that this was predestined. Well I find that conception of God increasingly problematic but the experience was spiritually moving enough to once again drive me back to Essex Unitarian Church that Sunday in order to light a candle and to thank God.

Everything changes but you

It wasn’t exactly a major act of rebellion but it was at least a start. It was 4am and I had woken up a few minutes earlier. I decided that I needed to go to the bathroom and so I rose out of my bed, walked the few feet to the loo, did the deed and then returned to my room. Then I prepared to do so a second time. Then I stopped. I didn’t get up again. I just remained in bed. I wasn’t sure whether or not I would get back to sleep, and in fact I didn’t, and, yes, it was probably because of my wilful destruction of the equilibrium of the day. However today was not just any day, it was according to my teacher Firm Resolution day.

In fairness that lack of sleep wasn’t such a great loss. It was understood that I would be receiving a call just before 6am and that constituted a lie-in. Besides , someone outside had been walking around ding donging a ‘wakey wakey’ bell around 4am. Had I been in my bed at home I might have wanted to rise out of my flat, to confront this noisy neighbour and to place that bell in a place where it would make less of a noise. However I wasn’t at home but at Gaia House, the Buddhist meditation retreat that I had first visited in 2014 (1). As I told Saul whom I first met last year at Dhamma Dipa (2), mind blowing as had been that particular experience, this time around I felt the need for something slightly gentler – three meals a day and sensible sleeping hours. What Saul and I in fact got was a biscuit for supper and a normal rise at 4:30am. What Saul also got from me was a slightly embarrassed apology at the end of those nine days.

Another reason for that ‘rebellion’ that early morning was that on the previous night I had gone to bed feeling mortified with humiliation and shame and the mask of stoicism couldn’t hide, or at least could not hide from me, the sobbing, crying little boy hidden behind that façade. Prior to going on the retreat I had resolved not to make endless phone calls during the course of the time away spent in ‘silence’. However a few practical matters had made that into an unrealistic proposition. Then practicality had morphed into paranoia and so the perfectly realistic desire to assure my boss that I was OK after startling the receptionist at my workplace when leaving the office on my last working day with a bloody head (I had accidentally bumped into a wall) and to investigate a credit card that had been refused by the cash machine on the day of my arrival led to other anxieties entering my head and to an endless succession of short calls to friends and family. True there were specific reasons for the calls but the overarching reason was OCD and superstition about doing things a certain number of times. Saul subsequently told me not to beat myself up about it and that next time around he would make the calls on my behalf. That yielded two thoughts in my head. The first was that this was a good suggestion, and the second was gratitude to him for still being willing to go on a meditation retreat with a fruitcake like me!

Yet here is the strange thing. While I spent the first few days prior to going on the retreat getting increasingly anxious about getting anxious while on the retreat, and while I envisaged myself emerging tearfully at the end of those nine days, that was in fact very far from how I did feel on that last day as I returned back to London. In fairness I did know even before starting those nine days of silence that such nightmaric scenarios were delusional and I absolutely knew that both spiritually and for my own mental equilibrium I needed to go on this retreat.
Yet Alongside exhaustion and a loss of weight, I also got from the retreat a certain level of calmness that genuinely did come to me as a surprise. I knew that it wouldn’t last and of course it didn’t since nothing ever does.

No, what changed when I got back home was that just for a few days my mind behaved itself. Normally my mind is prone to act like a radar seeking out sources of anxiety and the very moment that one ‘dilemma’ has been resolved, it’s immediately back to business as my mind seeks out another one.

Yet work for me this retreat somehow did. It wasn’t that my mind didn’t seek out increasingly ridiculous things about which to worry. Rather, the silent nature of this retreat meant that there was very little time for me to speak to Saul. I resolved that if I was to seek reassurance from him – ‘no Stephen it’s not a problem to touch your mouth after peeing’ (3) – I would only do so at the end of the day prior to turning in for the night. For the remainder of the time I could avoid ruminating on past humiliations or filling my mind with anticipatory dread by simply returning to the breath and dispassionately observing any thoughts that rose up.

Not that hurdles didn’t get thrown in my way. On the penultimate day at Dhamma Dipa last year Saul greeted me one morning observing that I looked very sharp dressed. For the next hour focus that should have been placed on the breath was instead placed on the mind and on wondering what Saul meant by such a compliment, while ZZTop rocked away in the background. This time around Saul again praised me as looking ‘dapper’ but he was able to explain that he was complimenting me on my change of attire, so those Texan rockers had little time to hammer away on their guitars.

As for the technique at this retreat, don’t bother reading any further. Did you do so? If you’re reading this sentence then I’m guessing that you didn’t do so. If so then why not? Did you
misunderstand my request, or did your mind shrug ‘bollocks’ and decide that it’s not being ordered around. Alternatively did you mull over what to do in your mind and proceed in any case. If so then congratulations, you are unusually aware.

The point is that the same principles apply to so much of our lives be it walking, eating or even to sleeping where we go onto autopilot and aren’t aware of what’s happening either in the body or in the mind. So here we were encouraged not just to walk slowly but also to eat very and I mean very slowly favouring every mouthful and feeling the desire for the food, and observing it going down our throats. That’s pretty heavy going and easier when tucking into the gorgeous food at Gaia House rather than into a McDonald’s cheeseburger. That may be why overall I still prefer the more macho approach at Dhamma Dipa where we simply sat like sphinxes unmoving and resolved not to react come what may be it pleasant or painful.

Yet I still received a sort of vindication on my last day of the retreat. Taking a train back to London and then using my disabled persons taxicard to phone for a cab, I discovered that the card had been stopped. ‘Oh well’, I thought nonchalantly and instead took a bus. At Euston I was helped by a young couple who on hearing about my retreat observed that I must be feeling really Zen now. Well yes, maybe I was after all!

(1) See my related posting ‘Children of Gaia’.
(2) See my related posting ‘Full Bodied Armour’.
(3)
In case you’re wondering, Gaia House is an old house and we were requested not to flush the toilets or to wash our hands after 10pm.

Tumare Darshan

Tumare Darshan

“Are you really sure that you want to go there?” asked more than one person when I handed them a flyer promoting the Darshan of Sri Swami Vishwananda. After all, I wasn’t sure what a ‘Darshan’ was although Wikipedia appeared to describe it as an ‘auspicious sight of a holy person’. Furthermore, I had never heard of this ‘guru’ and had no way of knowing whether or not he is a fraud. I had listened to him on YouTube but his message seemed to be to remind his followers not to forget to meditate, which placed him neck-a-neck in holiness with my friend Victoria. Furthermore, a few days before the Darshan I accidentally stumbled across a website ‘Vishwananda is fake’. I won’t repeat the claims stated there in case they are proven to be false and I find myself repeating libellous assertions. Yet attend his Darshan I did and I’ll explain why in a moment. However the concerns expressed by my friends were of a different nature. Were they going to try to convert me? Well I answered, if they think they’re turning me into a Hare Krishna then they have another thing coming. I suspect many converts come from a background of agnosticism whereas I had a Christian bedrock on which to draw. As for the other concern, that this ‘holy man’ might seek to cure my blindness and to place his fingers on my eyes, well I dare him to even try!

To understand how I found myself sitting cross legged on a cushion in a hall in East London with my hands in a funny position while people around me sang what I assumed to be Hindu chants, you need to know something about OM chanting. I got into that around the start of the year. I had heard about OM chanting through Meet Up and had images of people repeating ‘OM’ again and again while trying to resist the urge to burst out in fits of giggles. It could be a laugh!

So I turned up for my first session one Friday evening when I could do with clearing my sick little head after a busy week and was offered a cup of tea. That sounded like ‘home’ given my regular attendance at a Buddhist sangha and I was then shown into a hall, placed on a surprisingly large meditation cushion (larger than the one that I have in my flat let me assure you) and after some preliminary prayers (not to any particular deity thankfully) and my fingers were placed in some funny position in order to bring about positive vibes or whatever, we started humming.

In fact it’s a misnomer to suggest that we utter the word ‘OM’. I have done the odd OM chant, such as at the end of Yoga or in some meditation groups, where that word is very clearly discernable. However in this group, on a Friday evening, it’s was simply an endlessly extended guttural sound starting and stopping as people repeatedly took another breath.

It was also heartstoppingly beautiful and in some strange way did seem to spiritually purify the room of negativity. So much so in fact that on one occasion when arriving in a bit of a hump I emerged an hour later in a positively good mood. What was so amazing though was how my mind, when fully concentrating and freed of mental chatter, all too often imagined hearing other sounds. So on at least one occasion I thought I heard violins. One week recently when arriving too late to participate and when simply sitting on a chair outside the room and meditating, it was even then impossible not to be struck by the sparse beauty of what was created and to think that all this can’t just be the human voice.

So it was through this group that I heard about the Darshan. I wasn’t quite sure what relationship he has to the group but he seems to have something to do with this form of OM chanting. As for those negative online messages, I was just advised to ‘suck it and see’. In other words decide for myself whether or not the man was sincere. Later on that evening when discussing with a member of London Underground staff who shares my interest in matters spiritual whether or not I should attend, she put forward more or less the same encouragement.

Having received darshan I’m not much clearer now than I was then. All I will say is that he speaks sense and that the technique that he has pioneered and which I practice on Friday evenings is mind blowing. On one occasion Vishwananda encouraged people to join in (he had a surprisingly pleasant singing voice) to what sounded like ‘Rame Rame’ before I realised that it was ‘Bhakti Marga’, the name of his community. For the rest of the time, it just seemed politer just to sit in quiet spiritual silence. We were invited early on in the day to empty our head of thoughts and I sought to do so. Vishwananda asked the audience to join in the one prayer to God which was for the stillness beyond the chatter of thought to link into the Divine and that was one prayer that I could unequivocally endorse. I was just glad that he acknowledged that the mind might be more ambivalent towards such a fusion.

As for that blessing, he just placed his hand on my head, rested it there for a minute or so, lifted up my chin with his other hand and I gave him an open sincere smile. Then I went back and meditated for half an hour more as we had been advised to do.

So I don’t know quite what to make of it all. Maybe it’s a bit too Hindu for me but then again I was startled at one point to hear How Great Thou Art being sung by the choir. I don’t even know whether Vishwananda is truly a holy man or a fake but I do know that even if negative claims were proven to be true, that wouldn’t altogether diminish Vishwananda in my eyes. After all, many a great man has nevertheless proven fallible. All I know is that I did get spirituality and stillness from the experience and in that sense it was an afternoon and early evening well spent.