Equivalent to “caused by the intervention of aliens?” A philosophy graduate’s ramble on “psychosomatic” as encountered in Western Medicine

Equus_quagga_boehmi wikimedia commons photo credit Hans Hillewaert, copyright attribution
Source: Wikimedia commons; photo credit: Hans Hillewaert

I lay alone on the narrow trolley in a side room in a doctor’s surgery, the door partly open, half fainting, dizzy, sick, frightened, more unable to see than usual.  I couldn’t sit up, and when I tried to wriggle – the necessary technique for raising blood pressure – I felt worse and kept kicking things, and was afraid of falling off the trolley.

Outside, I vaguely heard a voice say, “Is she all right?”

And another voice, cheerful, scornful, “Yeah, she’s just mental.”

How do you know?  You haven’t checked.

Besides, “mental” is most certainly not “all right.”

To this day, I remain puzzled by my reaction to blood tests.  Orthostatic hypotension?  Granted, I spend my life trying not to faint, but I’ve never been found to have that particular problem in any other circumstance.  However, while the mild symptoms of pre-syncope can be difficult to distinguish from other conditions, there is no mistaking it when it gets that bad.  When they finally got me up into a wheelchair, I pretty much fainted again, and had to put my head down: a typical and particularly annoying part of the reaction is that when I am finally able to get up I usually have serious problems again a few minutes later.

Whatever the reason for my body reacting to blood tests like that, it consistently has done so to a greater or lesser extent through several years.  To assume a disorder is psychological, because it is not immediately obvious what the physical cause is, is like attributing every medical problem that isn’t comprehended to the intervention of aliens.

Most people with complex problems have had them dismissed as psychosomatic at some point.  And when I say dismissed, I do not mean the doctor saying, “look, one possibility is that this is caused by something going wrong with things in the brain you don’t have voluntary control over.  I think it is worth referring you to a psychiatrist to see if that’s right and if it can be treated.”  I mean people behaving as if you were doing it on purpose and deliberately wasting their time, doctors blanking you out without answers, assuming what you say about the symptoms isn’t really true, assuming that if you have any sort of mental health condition any physical symptoms without obvious cause must be caused by it, assuming that if what you say doesn’t make sense to them it must be psychological – and therefore, not worth any medical effort.

For instance, I have a sight problem which behaves bizarrely and has no obvious cause.  Nothing is wrong with my eyes (fairly conclusively) and nothing shows up on an ordinary MRI (this doesn’t prove either a positive or a negative when it comes to the possibility of a neurological cause).  However, there are at least seven contraindications to hysteria: (1) age of onset too young (by current medical orthodoxy at least), (2) lack of sudden onset, (3) unintelligibility (conversion disorder usually mimics a socially understood condition), (4) failure of treatment for underlying mental health problems to affect the condition, (5) the experience is wrong – if it was conversion disorder, I’d expect to be able to see but not able to make use of my vision for any conscious task: it’s actually closer to being the other way around, with more wrong with the unconscious use of vision than conscious awareness, (6) this experience fits the pattern of a particular type of neurological fault, and I did not know this until I described it to a researcher into vision, who did not find it odd at all, and (7) I flinch when someone unexpectedly touches my face when I should have seen them coming.  On balance of probability the primary condition is neurological.

The same lack of obvious cause goes for most of my symptoms, and I find it extremely difficult to communicate with doctors as a result – because among other things I am often talking to people who don’t seem to believe what I’m saying is possible.  That is, I spend most of the time expecting people to switch off, assume I’m not really telling the truth, and as a result of this, it isn’t easy to actually tell the truth.  It isn’t easy to say, “yes, my wrist hurts, and so does pretty much every other joint in my body.  Oh, I can walk ten miles – it’s just that everything really hurts afterwards.  Especially my shoulder.  And I also find it difficult and uncomfortable to eat, and keep making myself really sick on tuna sandwiches.  And I keep falling over when I try to turn round.  And I keep losing my balance when I’m standing up.  And my feet won’t come up properly when I walk but if you press down on the top of them they are completely sound.  And I can’t tell properly when I’m thirsty.  And my vision is like looking through a waterfall anyway, but I keep getting things which look a bit like an migraine aura, such as little flashes of light.  Oh, and I can’t comprehend anyone speaking when there is background noise.  And I can’t control my voice properly.  I never get the volume right and either I’m inaudible or I shout.  But they tested my hearing and there isn’t anything wrong with it.  And this shoulder is going really crazy and hurts twice as much as usual but there is no loss of flexibility.  Yesterday it was my right hip that was doing that.  Though I did lose flexibility that time: I couldn’t actually put my toe in my mouth as a result.  And I have short term memory problems and I’m really struggling with that.  And mild tinnitus.  And noise hypersensitivity.  But only to some types of noise.  And mild photophobia.  And I have all these weird hayfever/skin allergies.  I used to be able to detect feathers in a duvet by my physical reaction to it, but that one seems to have gone off.  And I keep getting these random sensations – like stabbing pains, and pins and needles, and like insects walking all over me.  And I tend to sit with my feet turned in and they’re rather an odd shape (they are, but probably nothing pathological – though it worries me because they hurt).  And I seem to have a fatigue problem – I seem to be exhausted after doing nothing very much.  I get really tired trying to sit up.  I can’t maintain a good posture at all.  And I usually get presyncope when I stand up.  Or if I roll over to sleep on my back.  And I have chest pain.  On both sides in slightly different places.  And everything that doesn’t actually hurt is really uncomfortable.  Oh, and surprise, surprise, I’m rather depressed and anxious.”

Kudos to my current doctors: they did ultimately work it out.  HSD/hESD or similar.  A genetic fault in a protein that’s found all over the body resulting in complex multi-systematic issues.  And the fact that they thought (probably rightly) that I have problems which are psychosomatic didn’t cause them to stop looking for a physical cause for some of the other issues.  But most doctors have completely switched off before I get to the tuna sandwiches.

It seems to me that there is a set of layered problems when it comes to “psychosomatic” and its kindred phrases.  The first is the way people tend to attribute anything they don’t understand to “psychosomatic” problems, by which they often really mean “unreal”.  This was very apparent with the episode I had after that blood test, where the nurses kept going on about how they needed the room for another clinic.  Um, yes, what do you expect me to do about it?  Get up and faint properly on the floor so you have an excuse to call an ambulance?!  This attitude leads to a failure to investigate symptoms properly.

Secondly, “psychosomatic” is a sort of wastebasket taxon.  It isn’t something that is diagnosed because there are symptoms characteristic of it and none that aren’t.  It is something that is assumed whenever what the patient says doesn’t make immediate sense, doesn’t fit the patterns of the common causes of such symptoms.  The more so if you are depressed or have a history of mental health problems.  It tends to be assumed that the mental problems are causing the physical ones, not the physical ones the mental ones, and this is further confused by the fact that with something like HSD/hEDS, there may actually be structural differences in the brain that give you more of a tendency to depression.

For example, I do actually have seizures, distinct from the fainting, which probably are caused by complex post traumatic stress disorder.  It is impossible to be completely certain that it isn’t atypical epilepsy or one of the rarer causes of fits.  But, in this case, contrary to my visual problem, there is positive reason to think this phenomenon has a psychiatric cause.  (1) I have a clearly diagnosed condition which is well known to cause catatonic seizures.  (2) The seizures match the biologically expected pattern: i.e. they are rigid, wavy flexibility, locked-in fits, which usually happen only when I’m both emotionally stressed and also trying not to faint.  A lot of vertebrates have a last resort predator defence of some form of catatonic state.  It seems to be a way of avoiding eliciting a further hunting response from the predator, and of causing the predator to release their grip, allowing escape.  In CPTSD, the threat response system in the brain misfunctions (for instance, memories do not process properly out of the amygdala), and this seems sometimes to result in this catatonic state triggering in a disordered way.  Because low blood pressure is something that could also result from having been significantly wounded by a predator, it is logical that it should be part of the set of conditions that caused this mistaken response.  (3)  Doing things that should help, such as getting up and walking gently about, and reassuring myself that I’m safe, and trying to control any other symptoms like flashbacks, or simply leaving the situation, does seem to help.  As does treatment for the underlying disorder.

However, this is the same logic that would be applied to any other health condition.  It isn’t, as I said before of most things attributed to psychosomatic problems, like attributing what is not understood to the intervention of aliens.  It is using the same process of scientific logic as is usually used on illness to work out what it is wrong with the body.

Psychosomatic illness?  Yes, in that the cause of the problem is psychiatric.  Physical illness?  Yes too.  My body is misfunctioning on the mechanical level in a tangible way.

The third problem with the way in which psychosomatic is used in modern Western medicine is that it tends to be “diagnosed” by doctors who are not sufficiently expert in the field to tell the difference between a physical problem they don’t understand and the real physical symptoms caused by a psychiatric illness.  This is in part due to the extent to which mental health is not really treated with sympathy or given its fair share of resources.  Conversion disorder should only be diagnosed by doctors with the right expertise, just as much as something like EDS, heart conditions, or rare forms of throat cancer.

By the time I was agitating for a diagnosis of what was wrong, I was sure I had problems over and above the CPTSD.  This is mostly because the problems were getting worse while the CPTSD was, in its clearer manifestations, getting better.  It no longer made sense as an explanation.

I went to the appointments regarding the possibility of connective tissue disorder prepared to deal with the dismissive response that I’d previously had from a neurologist, which fortunately I didn’t get.  There are at least a lot more things that can actually be observed than there are with neurological problems: for example, that I am hypermobile can be seen by anyone who knows what they are looking at.  They don’t have to rely on my description of the experience.

My plan in case of blank dismissal was to say as calmly as possible: “does this mean you think that what I have actually got is conversion disorder?”  And if the answer was affirmative, to ask why they thought that.  And if they gave an answer amounting to “because I don’t understand it” to protest that this was not really an adequate reason.  Then, if I could not persuade them to look more deeply, or if they did have a positive reason to suspect a psychiatric cause, to finish with, “then could you refer me to a psychiatrist?  Or at least strongly recommend that the GP does?”  This would prevent the situation stagnating, of carrying on with a vague dismissal, but no clear knowledge of the real problem.  Whether I would have got anywhere, given the lack of resources for mental health, I have no idea.  I’ve also come across quite a few people saying that they were still having their physical symptoms dismissed despite a psychiatrist saying they didn’t have conversion disorder.

However, it would have been an attempt to put whatever the illness was back on the map of scientific medicine, taking it out of the realm of aliens.

Cherry Foster

 

 

Receiving Communion in an Epidemic: the practical side

I’ve written at some length in previous posts putting the view that the Church* should never refuse people the Sacraments in response to an epidemic, regardless of the situation, but that we should take a lot of precautions.  To refuse to allow people to receive is to accept a secular view of life and death, placing a risk to earthly life over the Divine Life given to the world in Christ’s Body and Blood, and is to insist that God should provide grace and deification by means other than those He chose to give us.  Not to take precautions is to put God to the test and to disregard His gift of earthly life.  I want to write now on what this might actually look like – firstly with regard to the reception of the Precious Blood, and secondly, with regard to how we might continue to receive when it is reasonable to suggest it might be preferable not to gather.

Firstly, the issue of the congregation receiving both the Broken Body of Christ and His Precious Blood.  The statement that sharing the Chalice in and of itself is dangerous puzzles me, as I’ve always thought they had done research on this point before, and found that it was not.  However, once one is into social distancing, it might be quite hard to receive it without people breathing over each other (in any case, it is probably better to offer an alternative anyway once people have serious concerns, as it is preferable that everyone feels free to receive fully and completely, as Christ Himself gave).

I do think it is preferable to share the Chalice, and I think there should be very good reasons to suppose there is a problem before we stop, but if there are real reasons not to do so, I think it would be a lot more reverent to turn to some other means of receiving in Both Kinds, than to deny the laity full participation in what is their offering as much as it is the priest’s (yes, we have defended Catholic order for certainly as long as I have been involved with the idea that the laity are as much part of the offering as the priest).

There are three ways I am aware of in which the Precious Blood can be reverently received without sharing the Chalice.  That is, intinction by the priest**, the use of individual cups, and the use of spoons.  There may be others.  Intinction by the priest is, I think, probably the best thing to advocate as a solution within the Church of England, but I will briefly discuss the other two methods first.

Receiving from spoons is what is done in the Eastern Orthodox Church, and I have in fact never seen it done.  I believe the Consecrated Bread is put into the Chalice, and then both are given by the priest on a spoon.  It is possible to use separate spoons, and boil them between services, but I am not sure how close it is necessary for priest and recipient to get, which may be a problem.  However, the method does have the advantage that it is not necessary for the recipient to touch anything with their hands.  I was quite paranoid, at the start of the epidemic when still in Church, over the issue of receiving the Host from my hands, thus touching my face after touching things like door-handles.  I took to slathering them with hand sanitiser a few minutes before receiving, which probably works ok***.  However, I would have been glad to avoid it if there was a better option.

I’m inclined to feel that receiving on spoons is sufficiently contrary to our tradition and what we are used to that it might be quite hard to adjust – which can disturb people’s worship and their capacity for reverence and spiritual growth.  This adjustment is potentially a concern with any alternative: I think in that case it is necessary for people to listen to each other as they go, and try to work out what people are actually saying – and to weigh the real reasons for doing something unusual with the extent of the problems it is causing – including spiritual difficulties, which should be accepted as real and important if we believe the relationship with God objective.

Receiving from separate cups is forbidden in the Church of England, for reasons that I haven’t yet been into, so I am not going to comment in theoretical terms, except to say that if it is the possibility of irreverence that worries people, it is surely more irreverent to deny people to receive fully than to receive in separate cups.  My main interest in the method is the potential it has for increasing social distancing, as it seems to me that if we used separate cups, which the priest put down on a linen covered table for people to pick up, it would be possible to put the Host down on top of each, and have each recipient drop the cup into a bowl of clean water after reception, lessening the touching of the same surfaces by different people.  On the other hand, most of this can probably be achieved by Intinction via priest as well, so if there are those who seriously disapprove of separate cups for some reason, there isn’t much reason to specifically advocate it.  (I would not, incidentally, encourage anyone to use separate cups while it is forbidden, but, if they wish to do so, to go and argue in synod etc. that it should not be disallowed).

Intinction via priest is, I think, probably the best way to try to go in the C of E.  It is something that is done in the context of hospital reservations, so it is reasonable to suppose it is allowed (though in the C of E, one never really knows)!  I have two comments about this.  The first is: if the fear with intinction by the priest is that it will result in the Precious Blood dripping all over the floor after the Host is dipped in the Chalice**** there is at least one way around this.  There are vessels which are used to give a drop of the Precious Blood to someone who cannot swallow solid food.  Using one of these would allow precise control, so no more is placed on the Host than it can absorb.  Secondly, if people still feel that receiving Communion brings people too close to each other, the Intincted Host could potentially be placed reverently down on an appropriate vessel to be picked up by the laity.  I realise this isn’t ideal, but if the option is excommunicating the vast majority of the people of God, surely it is still better?

This brings me on to the question of receiving when it is not a good idea to gather.  My feeling is that going this far is acceptable, so long as Communion is taken to everyone who requests it.  The logistics of this are obviously going to differ depending on place and what is going on.  There may, for instance, be times when, for example, celebrating Mass in gardens for less than ten people at a time would be realistic.  However, what I’m writing about here is mostly the sort of things that might be done during a more extreme lockdown, in the assumption that the lockdown has at least a reasonable medical justification in regard to infection risk, however much it may ignore other considerations both medical and otherwise.

Firstly, I would suggest that as many people as possible are employed in the task, to reduce the contact of any one person with too many others.  There are quite a few laity deployed normally to take the Sacrament to the sick.  Moreover, it should be possible to divide people into groups so, for instance, a person who goes to people who think they have the infectious illness never goes to anyone else (I believe the medical profession have done this sort of thing).

Secondly, I think the first thing that should be considered is normal home Communion using the same precautions which would be used by a carer who needs to go in to nurse and assist the sick and disabled.  That is, that the priest should do that liturgy as normal, using an Intincted Host (why not?  It matters to many of us who receive to receive the Precious Blood – that people should care about a gift He died to give us is a gain to the Church, not a loss).

However, in the case of certain services such as the Triduum, which are not really amenable to this, I would suggest streaming the service online and then sending people Communion, perhaps while broadcasting relevant music.

If normal home Communion, with the minister reading a short liturgy with the people involved is reasonably deemed a significant risk, I would suggest that people receive instead through a minimally open window or door.  Minister and recipient could both wear a mask until the window is closed.  With COVID-19, it might make sense for people to receive at arm’s length across a garden gate, as it seems to be pretty much non-transmissible outdoors, but this would mean not having the solid screen provided by reaching out to receive around a window or door.

Alternatively, it might be possible for each household to be provided with, or provides themselves with, a corporeal or other way of covering a table such that it is a reverent resting place for a pyx containing the Sacrament.  This table should then be put by an unfastened door or window, which the priest (or other person licensed to take Communion to people) can push open in order to place the pyx down.  The door or window can be closed, and the household can then receive from the pyx (while the minister watches, if necessary – though this might not be possible in every circumstance because it requires either an accessible window or a glazed door).

Either of these ways of doing things could be preceded by an online service or by distributing service sheets to people to use themselves prior to reception (there’s a liturgy called, I think, Communion by extension, which is quite a good one to adapt for this sort of purpose) .

Ultimately, the exact details of what people feel should be done to reverence the Sacrament in the process of unconventional reception of it, or what they feel should be done to try to avoid risk of infection, is likely to be different.  What I am really advocating is an attitude of problem-solving: that is, that instead of giving up, we should regard the worship of God and the reception of what He died to give for the life of the world, as something that should not be stopped or denied to any portion of the people of God.  We are failing in our witness to Christ, by placing earthly life before the Divine Life.  It is possible to do otherwise without resorting to an attitude of reckless disregard for human life.

Cherry Foster

 

 

 

 

 

 

 

 

*Where I am (at least to the best of my knowledge) it is the Church that has been responsible.  There are (as far as I know) no police blockades outside Church doors, no spies following the clergy about watching for violations of epidemic precautions.  It is their hands that have turned the keys in the locks, they who have declined to carry out their normal ministry in response to orders and threats.  As I write, incidentally, I, having been a daily Communicant for nine years, have been left with no access at all to either Communion or Confession for more than ten weeks – and this looks like it could easily continue for a similar length of time yet.  I am in a state of spiritual agony, to say nothing of struggling with temptations against faith itself (how far the latter is a result of the extent of the spiritual distress, and how much it is to do with the fact that what has been done seems to be a complete denial of everything I have been taught, it is difficult to tell).  There seems no sign of any possibility of this changing at least until I am able to receive the Sacraments in their fullness again – if by then it is possible for me to do so.  There comes a point in starvation where it is impossible to eat again due to the effects of the starvation.  As it matters in theory, in the need to be authentic to our theology, it matters in practice, for the sake of the Life of the individual Christian in Christ, and through that, for the Life of the World.

**Intinction by individual members of the congregation seems to be thought to be more dangerous than simply having everyone drink from it – but for the priest to put a drop of the Precious Blood on the Host from a vessel designed for that purpose cannot carry the same difficulties.

*** I have no strong opinion, incidentally, on the question of whether it is possible to actually pick up infections from the Body and Blood of Christ in their physically real element.  On the whole, I would be inclined to think one probably can: it seems reasonable to suppose that if Our Lord had had a cold during His earthly life, others would have caught it from Him in the normal way, and that seems to me to be as close as one could get to the circumstance.  But it doesn’t seem to me to matter very much because (a) even if one can’t catch anything from the Consecrated elements, one could catch it from one’s unwashed hands or from liturgical vessels, (b) I think any risk that cannot be reasonably negated ought to be taken in faith, knowing God has a much longer range perspective than we do, and has given these gifts for our healing even if it doesn’t look like it in the short term, and (c) thou shalt not put the Lord thy God to the test.

****It would surprise me if this was in fact a problem, but it is a concern I have heard raised over the priest dipping the Host in the chalice for the laity.  It would presumably be possible to do the experiment with unconsecrated elements?!

 

Posting the Camel

Camel wikimedia photo credit John O'Neill copyright to attribution
Source: Wikimedia, Photo Credit: John O’Neill

Trying to communicate what it is like to live with a body that doesn’t behave normally

St. Francis of Assisi, it is said, referred to his body as “Brother Ass”, a good model, I think, in many ways.  It is a way of treating the body as a living thing and acknowledging it as part of the whole human person, without reducing the person to it, or suggesting that indulging the body is the main aim of life.

However, my body is more of a “Sister Camel”.  Donkeys, if well treated and well trained, generally co-operate.  Camels do not.

In some ways it is difficult to write about this because from the social point of view it is so bewildering.  I have spent my life, one way or another, being told that my body cannot be or act as it does.  My entire experience of the world is mediated through a body that does not act normally in some very subtle, highly variable, and extremely complicated ways.

For instance, at the age of thirty-one, I still sit on the floor a lot.  There is more than one reason for this.  Sometimes I have trouble with low blood pressure and sitting on a chair with my feet down is too much.  Sometimes there is no way of steadying a chair in an environment where I will either fall off or knock it over – or both – if it isn’t firmly against something and I have something to lean sideways on.  Sometimes it is plain too uncomfortable or tiring to sit up on a chair for any length of time, as I can’t really maintain a healthy posture.  And sometimes it is fine: it depends on so many details.  At present I have the computer in front of me on a monitor stand, my office chair (actually a reclining gaming chair) tipped back to a position of about forty-five degrees, and one foot on the floor and the other on the footrest.  I’m typing on a Bluetooth keyboard on a small desk in my lap.  Sometimes I will lie right back while working, but at the moment doing that is making me feel dizzy for reasons I don’t understand.  The sheer complexity is incredibly difficult for me, but even more confusing for others, who have no way of following what is going on at any particular moment.

Part of what’s going on when it comes to the difficulties communicating is undoubtedly a problem of reference.  It isn’t possible to tell, when we point to a colour and say “blue”, “red” etc. that our experience of the colour is actually the same as that of the person we are talking to.  We can only equate our own experience with the word that’s used.  There is reason to suppose that most people have a fairly similar experience given that they have no trouble learning and relating to the social categories of colour and giving colours their right names, and those who have different sensory experiences tend not to be able to do that either to the same extent or at all (colour-blindness, actual blindness).   But that does not hold with everything.  I am starting to get the impression, for instance, that when I say “uncomfortable” many people would say “quite painful”.  This is because the pain in hypermobile joints doesn’t generally show, and tends to be something you have to ignore because nothing is going to make it go away.  From outside, it is quite natural to say “don’t make a fuss.  Everyone finds things uncomfortable from time to time.”  So that becomes the linguistic description of constant pain in a child who has never really known differently.  Similarly, I am inclined to say I “dislike” a food, when what I actually mean is that I cannot eat it, because my body simply cannot be made to swallow it.  I still have no idea precisely what is wrong here.  And this difference of language makes it particularly difficult when talking to doctors, because they naturally hear what most people would mean by words like “uncomfortable”, and don’t realise how significant the effect actually is.

I don’t know what can be done about this, because the normal process of language learning and language use does require a certain assumption that experiences are similar.  But realising it can happen is probably a good first step.

Another frustrating problem is the amount I fall over when standing or moving about, usually in confined spaces.  For this reason, I believe visual disturbance plays a part.  My vision is rather like continuously looking at everything through a waterfall.  However, this is certainly not the only thing which gives me problems.  My knees bend backwards more than ten degrees – which means I am in an unstable position when they are locked.  My ankles seem to be wobbly – though I’m still to find out exactly what is going on there – and there is certainly something wrong with my hips.  Hypermobility disorder tends to overwork muscles (which probably also suffer from the genetic lack of properly formed connective tissue) and to confuse the body about the position of limbs.  Putting my feet down in absurd places such that it is impossible to balance is a major problem, particularly when turning.  So is the fact that none of the joints move smoothly.  (Think of the difficulty of trying to work a puppet precisely when it is strung with rather worn out elastic rather than string!).  And on top of this, I suffer badly from pre-syncope: the symptoms preceding fainting, generally dizziness and blacking out of vision.  And I will be apparently fine, and suddenly find my hip or my ankle doesn’t want to work when it comes to getting up.  Or I’ll find my body suddenly doesn’t understand which way is up and just tip all over the place like the drunken sailor.

The main thing I would say socially about falling is that a capacity to control a fall is not the same as the capacity to prevent oneself falling at all.  If I’m in a position of unstable equilibrium, I can usually fall into an open space if there is one there, but I can’t usually keep myself on my feet, and trying to do so tends to be more dangerous.  It isn’t a decision – there isn’t time to think – it is a matter of body memory learned over many years.  I did Judo when a child, and though that may not have helped in some ways, I spend a lot of time learning to control falls and to fall safely.  I’ve come off stairs from some way up and simply rolled when I hit the bottom, though my capacity to get away with that sort of thing is lessening with age.  Nothing will take much impact any more.  My worst falls are generally those when I haven’t realised that I’m falling, which does happen.  I’m also very nervy in crowds and around dogs, not because I have a phobia of either (yet), but because if people grab hold of me (happens a lot – I use a long cane) or if dogs jump up, or run around my feet too closely (confusing my vision) I tend to be knocked over.  Keeping your dog under real control is a great service to many disabled people.

With some things, it is life experiences other than those of disability which cause the problem.  I studied philosophy and had a friend who was a medical student.  I am told that about the worst pain you can get is a form of neurone disease starting in the pain centre.  It is utterly crippling, leading to people lying in bed unable to move, if it doesn’t actually kill them off hand, and no medical technique can relieve it in the slightest (at least, there was no effective pain relief ten years ago).  When people say “rate your pain on a scale of one to ten, where one is no pain and ten is the worst pain you can imagine” that is what I think of as ten.  I’ve probably never reached 1.1 if you think like that.  So I just end up bewildered.  People need to find a more objective way of assessing pain (impact would be, I think, the best: one is no impact, and ten is can’t move because of it.  But that needs a post of its own).

One of the other things I find difficult is that, while I do have a significant problem, it actually isn’t as bad as most of the people I’ve come across who write about the same condition.  They deal, for example, with feeding tubes and continuous dislocations, they have a heart rate that goes up by seventy when they stand up, they are continuously at a much higher pain level.  So I feel randomly guilty about having a problem when it is less bad.  Not at all logical, but feelings are what they are.

Anyway, improving understanding means communicating across the experience gap.  The first thing is finding ways of mutually understanding that it is there.

Cherry Foster

See also:

Posting the Zebra

Why the Zebra?

#raisingawarenesstogether

Lockdown, discrimination, and fair play?

Another discussion about civil rights and lockdown: considering prejudice and fair play.

There seems to have been an absolute uproar regarding the possibility that the over seventies should be legally obliged to stay at home, while everyone else is allowed a greater degree of freedom, while there does not seem to be similar uproar about legally obliging everyone to stay at home.

I appreciate that part of this is down to practical issues, such as the notion that people would have to carry identity documents to prove that they were not over seventy, but still, I don’t think that explains the whole of it.  Why should we feel an immense sense of injustice when one group is singled out like that, and not more of a sense of injustice when exactly what we would complain is being done to them is being done to everyone?

This is something that can be noted in other situations as well, for instance, if an employer paid their one white staff member an unjustly low wage, as opposed to a situation where they exploit all their staff members equally.  However, in that situation,  I suspect the implied racism is argued to be more sinister than plain, universal greed.  The injustice when done to more people is greater as an injustice, but this is balanced off by the particular moral depravity of racism.  I am not sure if I am convinced that this actually stands to the extent to which we tend to take it, for it would seem to me that a respect for the humanity of some is more readily extended to the respect for the humanity of all, than respect for no-one’s humanity.

I can also see that a feeling that something which is the same for everyone is different from placing restrictions on one group of people.  For instance, I would tend to argue that if an ID is required for buying age restricted products, it would be fairer to require it from everyone, rather than merely from those who look in the eyes of that particular checkout assistant as if they are under 25.  That everyone should have to put up with this irritation and inconvenience for the sake of protecting children and teenagers seems fairer than to say that only people who look in a certain way should.

I do agree with that argument as far as that sort of situation goes.  However, the lockdown isn’t that sort of situation.  Some children still have access to education while others don’t – on the grounds of what their parents do.  Many people are still working, if hardly as usual.  Those who live alone are confined alone (I did not touch another person for more than three weeks in the early part of the lockdown – indeed, I was not in the same room with another person for a day short of three weeks – I was using Skype video, and it is no alternative); those who live with others are at least not completely deprived of human contact – but are potentially having to live in a close confinement with them in an extremely stressful situation.  I have a house and garden, and can easily exercise without coming into contact with anyone (not necessarily a positive); others can’t come in and out of their homes without using shared lifts or staircases.

I think “fair play” can be brought in when it is the same for everyone (that is, everyone pays the same and everyone has the same access to the advantage gained) but in neither direction is this the case.  There is both the issue of the fact that the lockdown is much severer for some groups than others, in a way that is practically unavoidable, and the fact that, as most people don’t seem to be at serious risk, their gains are much more limited (they won’t be significantly ill, though they would suffer if infrastructure broke down).  As in the case of a lot of others with similar health problems: there was 100% chance I would be made very seriously ill by lockdown.  I am not at risk from COVID-19, as far as anyone knows, though I would be from structural breakdown (having said, does severe lockdown not run the risk of causing such breakdown too?).  Could one suggest therefore, that the policy constitutes indirect discrimination?  I don’t have a clear opinion on that.  But it is interesting.

Anyway, perhaps it would be reasonable to say in this case: if it is wrong to tell the over-seventies that they have to be confined at home, while no-one else is, despite the fact that this policy is probably a very logical one from the economic/illness/protect the NHS point of view, it is presumably wrong to tell everyone who isn’t a keyworker that they have to be similarly confined.  This would actually lead to the conclusion that severe lockdown was never a legitimate policy in the first place.  Given that my other lines of thought have tended to lead me more to “it’s wrong for this length of time,” I am somewhat perplexed by this.

Whatever else can be said, however, I think that considering legitimacy of restriction of normally important freedom in the context of epidemics and other natural disasters is overdue.  Human rights declarations tend to focus on other types of situation.  If these considerations are taken seriously, they cannot be set aside because people might spread disease any more than they can be set aside because someone might start a riot.

Cherry Foster

What Happened?

When did the UK become the sort of democratic dictatorship wherein innocent people have to wait on government permission to leave the house to attend religious worship, to visit a friend, or to conduct ordinary business?  Or even just to walk the dog a second time on the same day?

The fuss that would usually be made if someone not accused of any crime was placed under house arrest, allowed to go out only for limited exercise and essentials, and forbidden any religious ministry, for six weeks or longer would, I hope, be enormous.  More so if young children or people with serious health problems were involved.

Yet we (many in the UK) have already been in this situation for more than five weeks.

It isn’t ethically defensible to continue this policy, regardless of the possible or probable consequences of doing otherwise.  Return to normal civil liberty is overdue.  Being asked to take ongoing precautions while exercising these liberties is completely different.

We are going to have to learn to function normally in the presence of this disease: the sooner we do so, the less other damage there will be to make that difficult.

And if anyone is planning an appropriate act of Civil Disobedience – say, gathering in numbers on the local beach and walking about at least six feet apart, all wearing masks and gloves – I really would like to know!

Cherry Foster

Disability Adjustments and Lockdown: a comparison and a question

Suspending freedom to function for the sake of others’ need is a much more complex question than people seem to be allowing.  Here I consider it in comparison with what people are prepared to do to accommodate disability needs – though there are other possible analogies to explore such as what is and isn’t allowed in the criminal justice system.

There is an act in British law requiring institutions such as universities to make reasonable adjustments for disabled students.

However, “reasonable” can be very widely interpreted, and at my first institution it was considered unreasonable to expect lecturers to give me their notes on white paper.

The issues in living accommodation were worse: I had known dyspraxia and CPTSD, the latter in particular being well known to cause serious noise sensitivity problems, and yet it was apparently quite unreasonable to either place me in a student house with housemates prepared to be quiet, or to restrict the freedom of the other students by asking them to turn their music down or use headphones, in order to prevent their fellow student and housemate becoming seriously ill.  Similar difficulties are present with noise sensitivity in wider society: I lived briefly with a girl who was normally ill for several weeks around 5th November due to issues with fireworks, and I have heard someone with autism say that they had been on the verge of suicide due to a neighbour insisting on playing a musical instrument repeatedly in the middle of the night – the authorities insisting that it wasn’t loud enough to be regarded as an issue.

Issues with what you can ask others to do or put up with in order to accommodate the needs of others are complex, and I would not advocate a simple answer.  If there is one thing that is necessary to truly include anyone with extra or unusual needs, it is the acceptance that other people are still allowed to have problems and difficulties and needs too.  Community really can’t function if one person’s needs become completely invisible and irrelevant as soon as someone else is perceived as having a greater need.  The balance between normal freedom to function and the way in which what one is doing or not doing adversely affects others has to be maintained.  It is one thing to require the strong to bear some of the burdens of the weak, but the strong do not have infinite strength, and can still be overloaded.  It’s possible to have real and acute needs which it is genuinely not reasonable to ask people to meet due to the cost to themselves: an extreme example of this being people who need organ donations not being able to require them from live donors.

However, if this is so when it comes to disability and illness and need in normal times, it applies to an epidemic too.

I think that I would suggest our lockdown response to the COVID-19 epidemic is rather inconsistent, when it comes to the limitations generally placed on the ordinary adjustments made for disabled people on a day to day basis.  This is not simple because there are all sorts of reasons for advocating lockdown other than the protection of people at high risk from the disease, and a lot of the problems with disability adjustments come from a lack of understanding, rather than an unwillingness to make effort, or have freedom to do certain leisure activities restricted in some way.  Moreover, I think most people would argue that my university was wrong and should have made the adjustments I am talking of.  And what is justly required and enforced by third parties, and what it may be good for someone to do for others voluntarily, are different things.

I think, though, despite the complexities, requiring that people at low risk from a disease suspend all their normal activities and accept house arrest* on the specific grounds that it is to protect a different group of people who are at high risk of serious illness is problematic, unless it is also reasonable to ask a similar level of sacrifice and adjustment for those who have health and disability needs in ordinary times.

Cherry Foster

 

 

*This is slightly complicated: I personally have developed severe depression as a result of the lockdown, but I am thinking here of the people for whom it is unpleasant but not actually a threat to life or serious illness.

Epidemic, the Sacraments, and the Resurrection

Where do our priorities as Christians coincide with those of the world in an epidemic, and where should they differ? 

Resurrection_(24) Photo credit Surgun source Wikamedia Commons no copyright
Christ rescuing Adam and Eve (representing all humanity) from Hell. Photo credit: Surgun; source: Wikimedia Commons

In the middle of a serious epidemic, it might be appropriate that Communion should be received by an intincted Host being placed reverently in the recipients’ hand, at mutual arm’s length, through an only just sufficiently open window, with both recipient and minister wearing masks, and the recipient only removing theirs to consume the Body and Blood of Christ after the window has been carefully pushed shut.  Or whatever precautions best fit the disease in question.

However, that is very different from it not being possible to receive at all, other than because it is literally impossible.

In a time of contagious illness, we are in the middle of one of the more bizarre paradoxes of Christianity: that of our immense value for earthly life, which ultimately, nevertheless takes second place to the Divine Life in a case of head on conflict.  This creates a massive puzzle when it comes to the handling of an epidemic* of a sort to require serious precautions.

On the one hand, we should be taking every precaution to protect the sick and vulnerable, made in the image of God and designed, within God’s plan, for eternal glory.  Earthly life is made more precious, not less, by the life to come: partly because it is ultimately the resurrection of the body in which we believe, and partly because the created and redeemed human person is infinitely precious.  Earthly life is a gift of God too.  It is Gnosticism that makes earthly life evil and the spiritual good, not Christianity, in which this world is God’s good but fallen creation, which he is in the process of redeeming.

On the other hand, death is fundamentally unescapable.  We will stand before the judgement seat of our Redeemer, one way or another.  The Divine Life, that does not notice death, is normally received through prayer, worship and the Sacraments, and the transformation of being and action that sincere engagement with these things creates.  And the Divine Life is a more fundamental life than the temporary life of the earth.  Though it is impossible to say very much about the practical nature of these things (data deficient) salvation is something that grows in us through this life, as we become more truly restored in the image of God.

Therefore, care for earthly life should be extremely fundamental, but care for the Divine Life even more so.  The secular world may, according to its principles, treat Christian practice as if it was an emotional indulgence of the same sort as going down to the pub.  We cannot.  The normal means of the inbreaking of the Divine Life into human life is not something that can be completely yielded to pressure of any sort, even the threat of mortality, artificial or natural.  Indeed, it is in the face of mortality that we most need God, and it is in the face of death that the commission to reach out to the suffering world with the knowledge of God becomes most urgent.

I would suggest this creates a situation where we should mostly be trying to find ways of co-operating with epidemic precautions, legal and to a lesser extent advised, but should never give up on trying to find ways of working with them which make sure worship and the Sacraments are still accessible to people**.  And at the last, I think any restriction should be disobeyed, if accepting it means accepting a secular view of life and death, with its trivialisation of Christian worship.  However, I don’t think we should ever hold doing so lightly, or do this when there is any option which allows us to honour both commitments.  As far as I can see, much excellent work is currently being done in putting worship online.  But the weight our branch of the Church places on the Sacraments does not really allow us to stop there.  What is or isn’t being done about this, I am not at all clear, and I would like (again) to thank all the clergy for their efforts to keep on supporting people, but I admit to being rather uncomfortable with the way in which I’ve heard it talked about, without mention of the Christian understanding of life and death, or an apparent consciousness that this understanding might cause us to think differently from our culture about what we should do***.

I think, for instance, that I’d suggest the Church should be the last to stop gathering (whether that was the case this time, I have no idea: where I am it all happened so quickly).  Also, if the nature of gathering can be altered effectively, it would be logical to do so – gathering for services outdoors, for instance, at a careful distance, is something I have heard has been done in plague conditions in the past.  After which, I suppose, it is necessary to resort to non-public reception of some kind, such as cautious home Communion, with careful observation of the same precautions that would be used by visiting carers.

Indeed, though it would not be the sort of thing appropriately resorted to under any but the most extreme circumstances, I do remember hearing it said that the Easter Eucharist was distributed in a Russian labour camp of the Communist era, by concealing fragments of the Consecrated Bread in the boxes of cigarettes handed out to each prisoner.  That sort of thing raises the interesting question of which of the normal church rules of handling and reverence it is appropriate to suspend in any particular extreme circumstance.  But, as I would argue that any reverent reception of the Precious Blood is preferable to refusing to allow people to receive it at all, I similarly think any devout reception, even if the normal manner of reverence is impossible, is preferable to not allowing people to receive at all.  Having said, I do not think the issue a simple one.  Such a thing could certainly not be done without great caution, or indeed, without a reasonable amount of knowledge on the part of the recipients as to how to handle the Sacrament.

Ultimately, I think the point I am trying to make is that though our priorities rightly coincide with those of the secular world up to a point, it is necessary to refuse their priorities when it comes to the importance of supporting people in the Divine Life.  And following from that, it is worth in such circumstances talking about Resurrection, worth challenging the view that the best we can hope for is that science will ultimately defeat the illness (an expectation for which I have great gratitude, but which I do not think to be the end of the story).  Death is an enemy that has been far more utterly defeated than that, by the death and resurrection of our Lord Jesus Christ.

The Lenten call to repentance is not a call to despair but to hope.  It is a call to remember that we are ultimately created for a Life that no grief can touch or disease destroy.

I know that my Redeemer liveth, and though worms destroy this body, yet in my flesh shall I see God.

Cherry Foster

 

*I remain puzzled as to what causes the problem, given that coronavirus seems to have an incredibly low death rate as these things go, but I accept – despite initial scepticism – that there is a real problem now if people are ordering lockdown.  That isn’t a step most governments would undertake lightly.

**Possibility is different from what individuals choose to do.  It may be conscientious decision on the part of some Christians to stay away in time of sickness, or not to look to receive Communion in a time when it is difficult to gather or be in contact with others.  God works differently with everyone, and some people may be quite happily supported in their faith short term by other things.  But that is completely different from others saying to them “due to the risk we will not do this”.  That is not much different (perhaps slightly worse, by the logic I’m suggesting we should be using) from refusing to care for the sick on the grounds of the risk.

***Given what people are doing, this may well be because they are taking the modifiers for granted: as I didn’t grow up with a Christian world view, I don’t.  If what people say sounds purely secular, that is what I hear :-S

A letter to a hospital

Non-judgmentalism includes not judging when the issue is moral standards we believe in.

[I wish to raise a concern] about policy stated in a notice in the waiting room which I felt raises legitimate concerns about whether the paramount priority of patient care is being maintained.

The notice said that the hospital would not allow patients to refuse treatment from a particular member of staff on racist grounds, and that any refusal of treatment on such grounds could be considered refusal of treatment altogether.

I was horrified to find that any patient of yours refuses to be treated by a particular person for such reasons. Racism is very wrong, and its ongoing presence in our communities is rightly a deep concern.

However, I was more horrified that a hospital would consider responding to the problem in this particular way. Granted, patient care requires politeness and mutual respect, and I think it is quite reasonable to insist that no one responsible for their actions uses certain types of language within the hospital. But this is different from removing the patient’s autonomy to ask for a different doctor irrespective of whether their reason is good or bad.

For one thing, it creates a practical problem, at the minimum being a cover for incompetence, and at the worst, an abusers’ charter. Suppose a woman (or a man) believes that a doctor (or other member of staff) is using medical access to her body as a cover for groping her sexually, and that doctor is of a different race.

Such a policy puts her in a situation where if she requests to be transferred, but cannot prove a complaint, she is liable to be accused of racism if she requests to be treated by someone else. This may prevent her receiving treatment or trap her in a situation where the price of treatment is submitting to abuse. In cases where a person is not happy with the doctor’s competence, playing the race card to block their access to another doctor is likely to be even easier, as such concerns are often instinctive rather than analytical. The only way of preventing this is not to regard the patient’s possible reasons for making the request as a relevant factor.

I would also ask whether refusing someone treatment because they are being racist is really any different, in theory, from refusing a pregnant woman treatment because she refuses to marry the father of the child. The precise similarities and differences of the two cases are interesting, but the question is worth asking. It is usually argued that it is right for medical practice to aim to be non-judgemental about moral issues.

I appreciate the awfulness of racism, and the fact that the policy is a natural reaction to it. However, I think in the case of a hospital, it is necessary to stop at insisting that people must not be verbally or physically abusive, and not to reduce the autonomy of patients to make choices about who treats them.

 

Any thoughts, further arguments for this position, counter-arguments to it, or experiences of (probable or indisputable) racism in such circumstances, or of being accused of racism, or being unwilling to make a request for a different reason for fear of being accused?  It is hardly a simple question.

Cherry Foster

A Question of Value

Conventional feminism and real freedom

Suppose someone takes their daughter, or a young friend, to a social gathering*. This young woman is conscientious and high-achieving, and she’s at the stage of thinking about what she wants to do with her life, or, better still, about how she can best serve given her God-given temperament, interests, and talents.

At this gathering, she meets and talks with two women in their late sixties, one of whom has recently retired after being a consultant doctor for many years, and the other of whom has spent her life as the stay-at-home mother of her three children and as a housewife and homemaker.

On the way home, discussing these conversations with her grown-ups, would you expect both these women to be held up as role models for her? Would their different life choices be regarded as equally good ways for her to consider using her gifts and talents by her teachers, her parents, her school careers advisers?

Freedom, I think, would mean having the choice between paid work or traditional woman’s roles equally valued, advocated, supported, and respected.  Not a situation where girls are pushed into medicine and engineering in order to prove someone else’s political point!

We seem to have an odd tendency as a culture to say nice things about stay-at-home motherhood when directly challenged, but to talk and behave the rest of the time as if it was a waste of people’s time and talents, which no intelligent girl or woman could possibly “want” to engage in.

The acceptance that stay-at-home motherhood is not the right way for every family to do things, and the insistence that it isn’t a laudable ambition for a young woman** who’s drawn in that direction to “want” to occupy herself chiefly with the daily care of her family, are very different things.

Cherry Foster

 

*Or suppose, being at the stage I’m describing, you go to a social gathering, etc. I couldn’t write it to include that grammatically without it being hopelessly confusing.

**Or for a young man.  The gender specific language here is chiefly because I am trying to make a point specifically about women and feminism, not because I think stay-at-home fatherhood is wrong, or that it should be off the map.  I am not an egalitarian but a complementarian: I don’t want men who are suited to usually feminine roles, or women who are suited to usually masculine roles, to be prevented by prejudice or convention from doing them, but I don’t think it helps to try to obliterate the tendency of some roles and tasks to devolve more to men or women.  Rather I think, where relevant, a masculine or feminine environment should be aware of its tendencies and understand what it needs to do to welcome and include members of the minority gender.

2=2, Square Triangles, and the Real Presence

A brain-squeaking romp through some questions of chaos and omnipotence

Chaos_carolinense dr.Tsukii Yuuji Wikipedia commons copyright to attribution
Chaos carolinense, the giant amoeba. Photo credit: Dr. Tsukii Yuuji; source: Wikimedia Commons

2=2

It is apparently possible to prove this fact in a rigorous mathematical way, though I remain bemused by what rendered this necessary.

Chaos is presumably the state in which 2 does not equal 2.

(I leave it to whom it amuses to determine whether, if that is taken too literally, it contradicts the principle of ex nihilo).

Which inevitably brings up the question of whether or not God can make triangles square.

I assume that the definition of a square triangle is an entity on the Euclidian plane that has some of the fixed mathematical properties of a triangle, and some of those of a square. For example, four sides and internal angles that add up to 180 instead of 360.

If chaos is the state in which 2 does not equal 2, perhaps it follows that God cannot make triangles square on the grounds that it would be chaos, and it is contrary to God’s nature to create chaos?

However, it would be equally possible to argue that square triangles under the proposed definition would normally be a different form of “order”.

Chaotic square triangles are not really possible because there has to be something about them which allows them to be recognised as both triangular and square. They are insufficiently unintelligible to be chaos.

Which brings one to the question of whether or not God can create a boulder he can’t lift.

For a start, if God is pure act, a question that enquires of his potentialities is problematic.  We do predicate the language of potentiality of God a lot, as being creatures of time, we can’t really say anything without doing so.  But it is presumably somewhat metaphorical: it is hardly surprising if the metaphor breaks down in some places.

Also, if one understands God’s omnipotence in terms of there being no constraint that can be laid on him outside His own nature, the question is rather thrown back to whether or not the boulder question is a chaotic paradox or a paradox created by our lack of understanding, with the odds on the latter.  Does the question create a paradox regarding the possibility of omnipotence, or does the question require, in talking of God “lifting” a boulder, that this omnipotence is already denied?  To “lift” implies a being with constraints which can’t be automatically assumed to apply to God.

Or one could just argue that He has in fact done it, as in the Incarnation, He does accept some of the limitations of our nature. If the Creator God is rendered powerless in the manger and on the cross, then He has created boulders he can’t lift. (However, the “if” is key. I have no idea how one would go about speculating on the subject – it’s rather out of my province.  And note the fact that whatever is done with the tenses in that statement is problematic!).

On a different but related subject, I do believe in the Real Presence. People have a habit of asking me if I take it literally.

It depends what is meant by “literally”. If you mean “according to the normal workings of the physical world” then no, I don’t take it literally. I don’t think I am engaging in a cannibalistic revel! But if you mean “do I think the Communion actually is, really and truly, the Body and Blood of the Lord Jesus Christ?” then the answer is yes, I do take it literally. This is made more confusing because what I, as a Christian, think is going on ontologically in the normal rules of this world is very different from what a conventional atheist would think is going on.  It is God that fundamentally defines what it is “to be”, not the laws of the material creation, which are a contingent result of His “decision” to create.

Normally I distinguish the two types of “literally” by saying “mystically” of the Real Presence. But as what I mean by this is approximately, “according to the ontology of the inbreaking of the world to come,” it is perhaps not much help as a clarification under most circumstances!  The mystical, far from being merely symbolic, is as actual as – or more actual than – the literal.

(Part of the reason it is difficult to communicate Christianity in an accessible way is the extent to which the underlying assumptions are different from those of our culture. We are usually trying to communicate concepts for which our wider culture has neither language nor map).

It could also be pointed out that even the ordinary operation of the material creation has turned out not to fit into our ideas of “common sense”. Evolution and quarks (both of which I think to be true) are hardly less fantastic than the Real Presence in everyday terms.

The mystery of all three, and indeed of everything else, is, perhaps, not how God “could”, but why God “wanted” to.

Yes. It is indeed a fearful and wonderful thing that 2=2.

 

Cherry Foster