Posting the Zebra

When you hear hoofbeats, think horses…

Nokota_Horses_wikimedia commons photo credit Francois Marchal copyright attribution
Source: Wikimedia commons; photo credit: Francois Marchal

but remember it could be an okapi:

Okapi wikimedia commons Photo credit Daniel Jolivet copyright attribution
Source: Wikimedia commons; Photo credit Daniel Jolivet

In other words, start by assuming a sprained ankle, but don’t assume someone is lying or has conversion disorder because the symptoms don’t make immediate sense!

Why the Zebra?

#raisingawarenesstogether

May is Ehlers-Danlos syndrome awareness month, but as far as I can make out the same problems apply to many other rare, or even just confusing, conditions.  The genetic connective tissue disorders seem to be a particular issue, due to a combination of comparative rarity, multi-systematic issues, and comparative invisibility.  They produce effects no one expects to see.  The human body is held together by the proteins in connective tissue, so a genetic fault in the formation or transport of one of these proteins produces multi-systematic symptoms of widely varying severity wherever that protein isn’t able to function in the required way.

For example, I have neurological visual impairment, severe working and short term memory problems, severe sequencing problems, relentless joint pain (which I thought everyone had until recently), hypermobility, functional joint problems, headaches, significant fatigue, swallowing and voice control issues (causing problematic dietary issues), tendency to fall, gait problems, difficulty balancing on chairs, difficulty maintaining adequate posture, mild gut/abdominal organ problems, proprioceptive issues, sensory hypersensitivity problems, depression, anxiety, fatigue, paresthesias, palpitations (thankfully demonstrated harmless on scans), unusual proportions (makes it harder to find orthoses that work), fainting, temperature control problems, and probably a few things I’ve forgotten or haven’t been investigated yet.  While there is no ruling out co-morbidity at this stage (i.e. that some of these things are in fact caused by a second condition), as far as current scientific knowledge goes, all these problems can be caused by the one syndrome.  Combined with all this, I have a degree in philosophy (which took me eight years), I can walk ten miles (if I’m prepared to put up with the resulting pain and fatigue), I do complicated needlework, and I will climb over a fence if a gate can’t be opened.  It’s not simple.

There are a lot of real things which don’t seem logical at first sight.  The extreme complexity of the human body results in an equal complexity with regard to what can go wrong with it.

Cherry Foster

P.S. And here is a zebra if anyone was expecting one 😛 🙂

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

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.

Hinder us not from living

Taking precautions is one thing, refusing people the Sacraments on the grounds of risk another.

Though I would not challenge the conscience of anyone else on this point, I would say academically, that as a Church, I am deeply bothered by the sense that we are not acting as if we believe what we say in reacting to this epidemic by choosing to stop taking the Sacraments to people almost altogether.

This is because, whatever respect we have for earthly life – and not to respect earthly life as a gift of God is gnostic (i.e. necessarily incorrect) – we are supposed to regard the Divine Life as more fundamental.

This means that I would argue that we should be acting the other way up: that is, instead of saying “the risk to earthly life is the most fundamental thing, unless we can completely negate the risk, we should not take the Sacraments to people,” we should be saying “the risk to Divine Life is the most fundamental thing: we should take every precaution we can to preserve earthly life, but it is right to take whatever left-over risk is unavoidable in taking the Sacraments to people.”  If our Lord who died for us is not worth that risk, what on earth are we doing on a daily basis in ordinary situations?  If we do not believe that the Life that can’t be destroyed is received through these things, what is it that we do believe?

I would suggest that there is quite a strong analogy here with the Christian tradition of martyrdom.  It is who loses their life who saves it, who gives it up for Christ’s sake who finds it.  Many Christians over the centuries have met at much greater peril of their lives than we would be in (not that I am advocating gathering specifically, at least not in large groups – I personally would not see that aspect of things as essential).  As for the fact that whatever we do is a risk to others’ lives, that is true under any circumstances, not just these.  If worship means so little, we could be spending the time we normally spend worshipping helping the famine stricken, for instance.  We could save lives just as much that way, as by almost completely desisting from practicing in this type of crisis (yes, there are differences in the two situations, but are the similarities more important?).

I grew up in a secular culture that condemned martyrs for their inconsideration to their families in holding to their integrity.  St. Perpetua is supposed almost to have lost her child in prison due to the difficulties of feeding it, and her elderly father was publicly beaten and humiliated in court, while pleading with her to deny Christ and thereby spare her child*.  Yet I have no doubt that she was right to hold to her faith at their cost as well as her own, and it is reasonable if we trust God to assume that her doing so will ultimately serve both her child and her father more than her denying her faith would have done.  If I did not believe that, I could not have come so far in the vocation as a religious which I have sought to follow.

Moreover, I am bothered by the sense conveyed in the emphasis on risk to the wider community that Christian worship is merely a matter of personal salvation, personal indulgence.  Granted the element of selfishness is always something that I am vaguely aware of, and which I am perpetually trying to purify from my worship (or, if I was wiser, would be trying to let God purify), but that is beside the point, because it is a flaw, and not how things should be working.  We receive not just for our own sakes, but for those of others; we should ultimately become overflowing vessels of grace.  Just as catching coronavirus is not a risk only to oneself but to others, a person’s falling from the Divine Life will result in others being pulled down, by the lack of their witness and companionship.

I really do not want to suggest that any individual Christian would be wrong to accept not receiving the Sacraments during an epidemic, if they feel it isn’t necessary to sustain them, and I don’t want to suggest bad motivation in anyone’s case.  I know people are doing what they think right in a very difficult situation.

However, there is an unconscious inconsistency as far as I can see, in this action of making a priority of risk to earthly life, over and above the Divine Life.  The person to whom the priest takes the Sacraments, who then dies as a result of the risk of infection they took in so receiving, has still from a Christian point of view gained and not lost.  The risk of infection, moreover, comes under the rules of Double Effect**, if the Sacraments are regarded as having a real value as vessels of the Divine Life: the minister of the Sacraments in such cases is not morally responsible for any deaths that result due to doing something that is more than equally important for people.

It isn’t right to seek martyrdom, only to accept it, and I would emphasis that I do believe completely that it would be wrong to take careless risks with an infectious illness (“do not put the Lord your God to the test”).  But in the end, we seem to have been placed in a position where we have a fundamental choice to make between risk to earthly life and risk to the Divine Life, and we have chosen the former, mostly without even seeming to recognise a case for the latter***.

I think it is unlikely that I’m the only one to be immensely troubled by the logical and spiritual implications of this.

Cherry Foster

 

*http://ldysinger.stjohnsem.edu/ThSp_599z_SpDir/04_mart_vision/00a_start.htm

I do not know the weight of the historicity of this account, but for these purposes, it does not really matter: the archetypal understanding of martyrdom in the Tradition is more to the point, than what happened on any specific occasion (though I acknowledge that if it had never happened, there would be a lack of real witness to the value set).

**Double effect is when one and the self-same action results in a good consequence and in a bad consequence, which is foreseen but not intended.  For instance, when someone builds a railway, they build it in the full knowledge that there will be accidental deaths on it.  This does not make them morally responsible for these deaths.  Someone’s pushing an attacker away in the knowledge that they will probably fall over a cliff and be killed is a similar case.  For double effect to apply the two things should be roughly proportional (or, the good effect more important than the bad), they must be achieved in the same action (it is not possible to justify doing a bad thing to achieve a good one in this way), and the bad consequence should not be intended (i.e. the purpose intended should be achieved if the bad consequence does not come to pass).

***To come to different conclusions about what the priority of the Divine Life considered relative to the value we should put on human life would mean we do is not the same thing as taking earthly life as more fundamental – i.e. as the thing to which an appeal can’t rightly be rejected – which is what I am hearing in all the discussions I have had with other Christians on the subject.

Lock-Down and Mental Health Treatment

People with significant mental health issues are having their health sacrificed to the welfare of a different group of people, and they are unlikely to be given the help they need when the emergency is over.

Ultimately, with the exception of a few details relating to my Christian world view, I refuse to judge whether or not the UK government has been right to place its population under virtual house arrest (it is only legal to leave your home for a few very specific purposes like buying food) in response to Corvid-19.  I am glad I am not having to make the decisions.

However, as someone with long term depression and traumatic disorder problems, it cannot be avoided that I am being made seriously ill by the consequences to me of the restrictions.  And while this is slightly qualified by the fact that those of us for whom this is the case are still vulnerable to the collapse of infrastructure, as someone who is at very little risk from the disease itself, I am being made significantly ill by policies enacted primarily for the sake of the health and well-being of a different group of vulnerable people.

People often seem to underestimate depression – or rather, I think they confuse the minor forms with the severe, and assume that all depression is a matter of a bit of low mood which could do with a little bit of counselling and self-help.  It is quite right those things should be provided, but on the other hand, the fact that some people only need a bit of cream for their skin rash does not mean that all skin cancer is dismissed as a minor illness for which only minor measures are needed!

Given my tendencies, I have reached a point where I am desperately trying to process my emotions enough for the situation not to result in further traumatic disorder, but to keep them calm enough that the depression does not put me in hospital.  Though I’ve been out walking every day, I am concerned that I’m starting to develop a real (and potentially persistent) fear of going out, and I’m really struggling with my self-care, to the point that social services is having to step in to assist.  I am too fragile to communicate with people much, and this is particularly frustrating as it cuts me off from a lot of online things that would be helpful if I was well enough to access them.  And though I am doing my best, and hoping it may be possible to find ways of coping, the chances are that my health is only going to get worse the longer the restrictions continue.

The fact that it is like this for me may be a result of idiosyncrasies in brain structure that result from hypermobility disorder, though I am not sure how well established that suggestion is.  In any case, it is an illness like any other, not a matter of wilful weakness or simple ineptitude.  It can be responded to badly – in much the same way as a diabetic can choose to try to be careful with food or not – but it isn’t a choice or a failure merely to suffer from it.

At the present moment, I have excellent medical care (without which I would be much worse) in managing the immediate symptoms, from my GP, to whom I am extremely grateful.

However, there is a reasonable likelihood that I will develop long term problems – problems that do not ease with the easing of pressure – damage that will go on crippling and harming my life indefinitely, and this is not the province of a GP.  Even if I personally don’t develop long term issues, it is a reasonable assumption that there will be people who do.

What has been done has been done in an emergency situation, and as I say, I refuse to judge whether they are right or wrong to do it.  But the fact remains that there is a population of people whose health and wellbeing are being sacrificed primarily for the sake of the health and wellbeing of a different group of people.

When the emergency is over, will those who find that long-term damage has been done to their mental health by the precautions, receive prompt, automatic, adequate, expert care?  Or will there be no resources for them?  When they have suffered horribly in order that the health service may care for others with what is perceived to be a more urgent need, will they find, when that urgent need lessens, that they are the priority and that they will, without having to fight for it, receive the same care?  Will the health service then set up “field” mental health units and take on more staff to deal with the illnesses of trauma and depression and any others caused by what has been done by the government to deal with corvid-19?

From my previous experience, it is reasonable to project that the answer will be “no”.  We will probably be left to our ongoing suffering, perhaps with a little bit of very limited, non-expert counselling, and such as our GPs can do with medication.  Having been made ill by the precautions taken for others, we are likely to be abandoned to suffer from that illness.

Seriously, whatever else is right or wrong here, not regarding the serious mental health illnesses caused by precautions against the coronavirus as being due the same weight of medical assistance, is not right.

Cherry Foster

 

The car crash-coronavirus analogy again – and the reception of the Precious Blood

The withdrawal of the Precious Blood from Anglican congregations due to coronavirus seems to lack consistency when it comes to the way we handle different types of risks.

At time of writing, the death count among those positive for coronavirus in the UK is published as 21*.  And without a miracle, it is clear that the number of deaths is going to rise, though hopefully we will come out of this and find fewer people have actually died of it than of the seasonal flu.  (This doesn’t mean I’m not aware this particular epidemic presents some peculiar challenges not involved in the case of the flu).  Taking sensible precautions against infection has a role in helping the death count to stay low.

The hope that the numbers will be statistically low does not mean those deaths do not matter.  I am sorry for people’s loss, and I will be praying for those who have died of it and for all others who have died in the last few weeks (of whatever cause), that they may rest in peace and rise in glory.

However.  1,784 people died on the roads in 2018, and those deaths are not less important.

When driving a car, you don’t drink too much alcohol, you fasten your seatbelt, and you refrain from using a hand-held mobile phone.  At least, I hope people do and don’t.

Do people say: “is my journey absolutely necessary?” or “It is incredibly selfish for anyone to make a car journey because it might put others at risk.”

No.  We take sensible safety precautions and we don’t hesitate to make the most trivial of journeys.

But when it comes to the Precious Blood of Christ, who resigned His equality with God to be born Incarnate, to live, suffer horribly, and die, in order to give us that most precious and unbelievable gift and the life and love that is received through It, do we take sensible precautions – make perhaps a few careful changes to exactly what we are doing – and carry on receiving?

No.  We say: “it isn’t necessary for validity.”  “It’s selfish to ask to go on receiving because it might put others at risk.”  We treat Him as if receiving Him in the completeness of His gift was an emotional indulgence – was more of an emotional indulgence than a car journey for a Saturday afternoon trip to a tea-room.

How can we respond like that if we believe what we say?

Cherry Foster

 

 

N.B.  I would ask anyone responsible for the policy or for implementing it to appreciate that this is a cry of perplexity and anguish, and an appeal to rethink the importance of what is being denied – to Him, as well as to us – it is not an accusation of deliberate hypocrisy.  I come out as INFJ on Myers-Briggs: I genuinely tend to be both coldly technical and passionately emotional at the same time.

*Lest I spread alarm and despondency: this is as yet a tiny fraction (0.018) of those known to have it in the UK, and as they are testing the more serious cases (i.e. the people more likely to die), the number of people in the UK who have got it who have actually died is almost certainly comparatively tiny.  Not that deaths don’t matter.  Just that it is not a cause for panic.