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

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

What is it with the UK benefits’ system and letters?

I am long term disabled and am on a time unlimited award of the rather cumbersomely named “Income Related Employment and Support Allowance”.

It is the 14th May.  Today I received two letters from them, both dated the eighth of May, and involving eight sheets of A-four paper in all.  The latter three of these sheets seem to contain exactly the same text, except one significant difference in date.

The one I opened first informed me that from the 4th June my Employment and Support allowance would be X amount due to a change in “money coming in”.  Uh, what?

The one I opened second informed me:

“We cannot pay you Employment and Support Allowance from 7th May 2020.  This is because of: a change in money coming in.

“You are not getting any more income-related Employment and Support Allowance.”

After a brief explanation of why not, it immediately continues:

“From 11th June 2020 your Employment and Support allowance will be X a week…”

Are you confused yet?

To add to the confusion, the financial information on the last sheet, informing me what they think my income is and what I should be entitled to, is identical except for the date on which payment will reassume.  Neither explains why they think I currently have a higher income.

The only recourse if I want real information would be to ring the helpline, which would, from previous experience, likely result in my sitting for more than half an hour in a queue only to get through to someone who may have no idea what the answer is anyway, though they are better with this type of query than with some others.  Besides which, being severely dyspraxia (a major part of the reason I am on benefits in the first place) on a bad day it is not really possible to either dial the phone-number right or get through the security checks with things like NI numbers.  I’m quite capable of giving my date of birth wrongly, though I haven’t done that for a while.  Add in depression and my other problems and pursuing this sort of thing is impossible.  (I am one of the lucky ones: my family picks it up when I can’t do it).  Moreover, no-one can spend hours of energy pursuing confusing letters, and also put this time and energy into things which may help them move into work, let alone people with conditions that involve fatigue problems.

My guess is that these letters are a result of the fact that I have an unpredictable payment every now and again from a family trust, and that they have deducted an amount of money equal to this extra payment last month or something.  But it would be seriously helpful if they told you that, rather than coming out with machine generated jargon which tends to be fairly unintelligible and doesn’t say what you actually need to know to manage your money well (i.e. what the change in your income has been).  All of this is typical – it isn’t an aberration, and I have had much worse from them (suddenly requiring several years worth of back statements from several bank accounts, with indisputable mistakes in the dates involved, for example).

Could I perhaps suggest that one cross-party reform to the benefits’ system that is overdue is that of employing a few competent administrators to write intelligible letters to claimants about what is going on and why?

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.

How to assist a disabled stranger without killing them…

All right, that is an exaggeration, but it isn’t as much of an exaggeration as I’d like it to be. I am incredibly grateful to live in a society where the main danger of having a disability is being accidentally knocked under a train by a person who was “only trying to help”, rather than that of being attacked and killed by someone who wants a disabled person’s body parts to use in a magic spell.

However, it is also true that as a culture we lack “manners” for offering and declining/receiving help in many situations, to a point where it is a serious problem, causing actual danger, loss of functionality or confidence, and mutual social resentment.

Here are some (obviously somewhat limited) suggestions about how to offer assistance without doing anything damaging or inappropriate.

Stop.  Think.  Ask.  Respect.

 

Stop:

Don’t panic. Disability is a fact of life, not an emergency.

 

Think:

Take your mind off the disability and note something else that is human about the other person. Are they wearing a wedding ring, a university hoodie, or the latest fashionable hairstyle?

Do they look as if they want help, or are they just getting on with life?

Is offering help at this moment going to make things harder rather than easier for them? If someone has visual impairment needs, wait until after the station announcements. If someone is in a wheelchair, do not move the wheelchair ramp they are trying to go up in order to be able to stand where you can speak to them!

 

Ask:

This stage is about establishing whether or not the person would actually like help.

If you think the person might want assistance and you are able to render it then:

Try to avoid rushing headlong towards someone – this can come across as threatening. We cannot read your minds either! You might be coming to offer help – or you might be rushing towards us with a knife…

Respect personal space generously.

Ask verbally if they would like help.

Never randomly grab or touch someone or their mobility aids without interacting with them first*. At best it isn’t appropriate – it leaves them with no polite way out of the situation if you get it wrong – and at worst it is extremely dangerous – as when someone has poor balance and they end up being knocked off the platform into the way of an oncoming train.

Open ended questions such as “would you like assistance?” are often best. Imagine your work colleague is swearing at their computer, or that you are a shop assistant not sure whether a customer wants to browse or wants to be served. This avoids the awkwardness involved in saying “would you like me to help you across the road?”, followed by an utterly blank face and the words, “What? I wasn’t trying to cross the road”!

Avoid starting with questions or statements which assume the other person wants help. Examples would be “which bus are you trying to catch?” and “I’m going to help you around this sign.” Make sure possible answers to your question include a polite “no, I’m fine, thank-you”.

Don’t pester. Repeat the question once in a slightly louder voice, if you think they might not have heard it, and if they ignore you, then leave them alone. They may need to concentrate and demanding their attention will make things worse.

 

Respect:

Remember, people with disabilities have the same autonomy as anyone else. They are entitled to decide to walk down the street without assistance – and get their feet wet in the puddles or whatever – no matter how stupid the person offering the help thinks they are being in refusing!

If the person says “no thank-you” to help, say something like “have a good day” and leave them alone at once. Don’t press them. I understand why people do, but the harassment value of that can become a problem, particularly when we’re talking to the 6th person to offer help in 8 minutes! In that type of situation, we need to be able to say no thank-you quickly and get on with what we are doing, without having to spend ages arguing about it.

If the person says “yes” to help, try to do what they ask as much as possible.

If you aren’t sure what they want you to do next, questions like “how would you like to do this?”; “do you want to take my arm?”, “would it help if I held your stick?”, are generally completely fine. People tend to get good at explaining what they need done.

 

Cherry Foster

 

 

*With visual impairment, I think this problem arises partly because it genuinely is appropriate to touch a person with VI with whom you are interacting more than you would someone fully sighted. This is because it is a way of using a different sense to compensate for the absence of vision.

However, while it is appropriate to use touch more when interaction has been established, in my opinion it is actually less appropriate to try to establish an interaction with a person with VI needs by touch, due to the fact that they may not know you are there.  (Unless they are also deaf – I have no idea what it is appropriate to do in those circumstances, as none of my “ask verbally like this” stuff can be assumed to work in that case. In the UK, people who are also deaf will often add red stripes to their white cane to alert people to the need for a modified response).

An Annoying Irony

Person-who-does-at-least-have-the-decency-to-be-frank-rather-than-clandistinely-spiteful:

“You told me you couldn’t do X, but you just did Y.  I can’t see how that makes sense.  People who can’t do X didn’t ought to be able to do Y either.  I’m not going to adjust for you or assist you any more, because it’s obvious you’re just a horrible person pretending to have a problem.”

Person-with-unconventional-physical-limitations (a.k.a. a disability):

“So, instead of rejoicing that my difficulties are less than you thought they were, and that you didn’t have to make the adjustments you seem so much to resent on that occasion, you accuse me of pretending because my physical limitations differ from your assumptions about how they ought to work?

“Let’s look at this logically, if rather over-simplistically.  It isn’t possible for someone to do what they aren’t able to do.  It is possible for someone to not do what they are able to do.  The only way in which I can make my condition look as if it fits incorrect assumptions of how it ought to be is to not do things which are perfectly possible.

“Therefore, what you are saying constitutes a social requirement to malinger.  If I do not pretend, I will be accused of pretending!”

 

Cherry Foster

The Dangers of Health and Safety

Photo0720
Which is the greater trip hazard, the warning sign, or the hose of which it warns?

I got a bit bruised that day.

I was walking around a dimly lit church; I made a mistake with my cane – and fell with an awful crash over the wet floor sign which someone had put in the way.

The safety sign was certainly more of a hazard to me than a wet floor. Most wet floors are not significantly slippery if you wear shoes with a good tread.

It is thankfully unusual for me to actually fall over wet floor signs, but they are a massive obstacle, placed as they generally are in the way of doors and corridors. The classic A-board signs are Schrödinger objects – objects I cannot readily observe without altering their location – when contacted with the cane, they tend to fall over.

Though it might be logical to conclude that the signs are only a hazard because of my unusual way of functioning, this does not seem to be the case. Others without worse difficulty than need-for-glasses say they keep tripping over the things. Moreover, the floor beneath them is not usually wet, so perhaps about half the time or rather more they are the only hazard present.

The natural solution in our society would be to require people to put up an infinite regress of warning signs: “Warning: Wet Floor”.  “Warning: Trip Hazard: Wet Floor Sign”.  “Warning: Trip Hazard: Trip Hazard Warning Sign”, ad infinitum!

The self-closing fire door is a similar issue. I lived in a flat with internal fire doors for a year. They were heavy and hard, an endless cause of bruises wherever they hit me, and of minor injury to my hands. They constituted a continuous risk of being trapped in the kitchen and unable to get back out.

The only way I could cope was by propping them open the vast majority of the time – mercifully not forbidden in the tenancy contract – which I would guess from the point of view of fire is actually worse than the presence of normal doors which do remain closed most of the time. Indeed, fire doors which didn’t come back at you like an avenging fury, but stayed where they were put, would probably have been perfectly manageable.

Again, I thought this was unusual, until I heard someone talking about the danger involved in the self-closing fire doors in their corridor at work, particularly when it came to moving large items about.

Part of the problem, I suspect, is that the sort of injury that is frequently acquired from fire doors is less likely to be recorded in accident statistics than the sort of injury that is occasionally acquired from their absence. If I have to live with being continuously covered in bruises and with minor cuts to my hands from my inability to handle my fire doors safely, A and E don’t find out, though its impact on my life is hardly insignificant.  If you are involved in an accident with a trolley as a result of an over-enthusiastic and badly placed self-closing fire door, it is likely to be the trolley, not the door, which gets the blame. I never actually broke fingers or anything worse, though I was quite afraid of doing so – it didn’t exactly make for a homelike existence. And people are mostly very heavy handed about trying to force even those of us with extra physical needs not to prop such doors open, regardless of the resulting risks, or the practical consequences of that refusal, such as not being able to live independently.

There was a tiny risk of someone dying in a fire that might have been prevented by those doors. There was an absolute certainty of my injuring myself as a result of the fact they were heavy and self-shutting. That isn’t an aspect of things people should be ignoring.

I’m all in favour of reasonable and sensible health and safety, having met someone from another part of the world who (if I have this correct) fell through a poorly maintained balcony while pregnant. It is worth putting effort into making things safe, particularly in the type of shared environment where people do not have much personal capacity to alter the extent of the environmental risks they are enduring.

However, these things do need to be thought about holistically, and with an awareness and consideration of the real practical consequences of the precautions required, both to safety and to life in general.

Requiring people, by force of law, to put hazardous signs and doors all over the place is not what health and safety should be about!

Cherry Foster

Is all-age worship possible?

“Children prefer all-age worship,” someone says. The sense of loss and weariness and “this church just doesn’t have a place for people like me”, remains with me for days. True, to be painfully honest, everything about the church is “ouching” me at the moment. But the focus on children to the exclusion of anyone else is one of the worst and most ongoing difficulties I have. Of the things that parish priests could do to assist religious vocations, I would say that a reasonable value and respect for silence and focus, not relegated entirely to private prayer or low Masses, and respect for those who suffer from noise in worship, is among the most important things. Otherwise the spirituality of a contemplative life is being crushed out before it can even begin*.

I also believe it is very important to welcome children  – and their parents/carers, whose needs aren’t met if the children’s needs aren’t, but who also have a whole complex set of needs of their own. This tends to result in my wanting to contrive and support as much creative and fruitful separation of children’s activities and worship as possible. On the other hand, driven crazy by the refusal of others to hear the reality of my needs and problems, I am very eager not to do the same to others. If being part of services which involve the whole church community is important to children, then it should matter to the rest of us as well.

My reasons for hating what I’m used to thinking of as all-age worship are of several different types. The main one is quite simply: noise. And lack of stillness. I am a contemplative, an introvert, a person with two different health conditions which increase my sensitivity to background noise, and someone who has never lived with young children since I was a young child myself. I do my best, but I don’t respond very well to short services of spoken words alone (thankful though I am that these are often quiet actually during the service). The occasional high sung Eucharist which is accidentally quiet I seize on like someone starving – but without being able to expect it to be quiet I find it difficult to respond as fully as I might – in the same way as I have a lot of trouble going to sleep if I’m expecting to be woken up. While I doubt many people are unfortunate enough to have all five of my difficulties with noise combined, there are plenty of introverts, plenty of people without children, plenty of people with disabilities which make noise more difficult out there. And possibly plenty of contemplatives – but who knows?

There is also the fact that most of the things I respond to naturally are thoroughly adult. Long services, lots of silence, lots of symbolism, music that’s technically good, lots of things that appeal to the intellect, lots of sensory input of different kinds, no distractions – and minimal surprises or unexpected or out of place happenings**. It seems to be inherent to my personality to need a combination of complexity (to hold my attention) and order (to keep things calm). And this is not likely to suit children under a certain age.

I also associate all-age with a particular type of stifling of spiritual growth. There was a cultural tendency in the church I grew up in to try to make stuff all-age by reducing it. Everything had to be aimed at a child of 8, and anything that wasn’t suitable for young children was supposed to be scrapped, trapping everyone at a certain stage of growth and forbidding them to go further or deeper in their journey. Anglo-Catholics don’t tend to do that, as far as I can see. What we do tend to have is an attitude that being in the building where Mass is being said is “worship” regardless of what we are actually doing or thinking during that time, which I would respectfully suggest is not actually consistent with our principles!

It seems to me that all age worship usually either means a group of adults doing things along with the children which seem to be done entirely for the children’s sake, rather than in order to worship, or it means the young children playing, screaming, fighting, and banging their toys around in some isolated corner, while those adults who are fortunate enough to be able to worship despite this get on with doing so, and those of us who are not sit there in protracted agony. In no way is either all-age worship. Being in the same room should not be considered as enough.

If the problem is that children, in being separated off to do something else, feel as if they were not part of the church community, perhaps there are ways in which this can be ameliorated other than all-age worship. Our church has a custom I love, of bringing the Sunday-school children in with the procession of clergy, and having the celebrant bless them before they leave to do something different during the liturgy of the word. As an adult helper, I felt that our part in what the church was doing was being affirmed and blessed and included, and I hope the children more or less felt the same. Moreover, I have been told by people who have tried it that it is possible to get very young children joining in meaningfully with adult worship with minimal alteration – much younger than is spontaneously possible – if the effort is put into teaching and assisting and the expectation is that this is something they should mostly be joining in with too – when the time they are being asked to be quiet and engage is age appropriate. So it may be that it is possible to look for other ways of making the children feel included while sticking primarily to a “separate group” policy, or by enabling them to engage much younger with “adult church”, thus making that closer to all-age without rendering it useless to a proportion of the adults. Whether this is so or not can, of course, only be answered by them.

I should also say that I am aware of the possibility that this is not so much about all-age worship as the fact that a vocation of the sort I have is like a fish out of water in a parish. While there is certainly an element of that in my reactions and feelings, the degree to which it is unacceptable to say that you have difficulties worshipping without silence and focus leaves me unsure of how much of my experience is unusual.  I don’t know how much my impression of isolation is caused by the fact that it is just not ok at the moment to admit to having difficulties caused by anything children are doing or by anything done for the children.

Anyway, to my original question “Is all age worship possible?” I think the answer is that it is something very well worth trying to do, both for the sake of those who want it and on the grounds that ultimately we are a single community.  But it needs to be attempted with the real consciousness that if we mean “all-age”, we have to mean that we are trying to make it work equally well for everyone. If it is working for the toddler, but not for the single young adults, the parents, the middle aged, or the elderly and frail, it is not working, just as much as it is not working if it is not working for the toddler. I think also it is necessary to accept its limitations and to do other things as well, rather than attempting to make all our worship fit that pattern and no other. It is an adventure. It is worthwhile.

Cherry Foster

 

*The current precedence of noise over silence is a much wider issue than children alone, but children do seem to me to be one of the major genuine issues, i.e. where there is a real pastoral need on the side of noise as well.

**I do usually manage to avoid fainting! While I’m well aware of a different side of this – the need to accommodate disability, including my own, without allowing it to disrupt worship, that issue is not one I want to talk about in public about at the moment.

Asking Unaskable Questions

You volunteer as a Cathedral guide, and are standing about without very much to do. A fellow guide comes over. “Two – women – want a tour. I have to wait for the coach party at 2. Can you take them round?”

You haven’t anything else booked and there’s someone to mind the leaflet stand. “Yes”. You walk over.

The two – women – consist of a younger woman, who could in point of fact be anywhere between twelve and forty, wearing a plain green hoodie and denim skirt, sitting in an electric wheelchair with her head on a rest, faltering out highly distorted speech. With her is an older woman, with greying hair and a stylish umbrella.

This could be anything from a student who has just graduated from Cambridge, out for the day with her paid carer, to a mother with her daughter who has a permanent mental age of six. At first glance, there is no way of telling. Yet the appropriate response and appropriate tour is completely different.

I’ve been on all three sides of this: I’ve been the visibly disabled person (most common), the volunteer who has to work out how to respond, and the (perceived) carer who is liable to be treated as a machine and ignored, rather than included as a friend or relative (which was the actual truth). There are real difficulties to all three positions.

The step of dropping the blanket assumption that someone with a physical disability is necessarily mentally impaired is beginning in the UK (I think we should be careful of assuming we are the first culture or society to make that step, lest we be justly accused of arrogance).

Unfortunately, I speak advisedly when I say “beginning” – “does he take sugar” is very far from being played out. It can be seen in many things, from the typical legal warnings about the use of products (which assume disabled people lack agency and automatically aren’t responsible for their own safety) to the social tendency to ignore a disabled person’s insistence that they are able to do some ordinary activity, but to instantly believe anyone with them.

However, it isn’t enough to say what people shouldn’t assume, without offering some different norm that they can use instead.  There is a real problem of communication and etiquette. How can we tell? How can we communicate what the appropriate response is in such situations? How do we start a conversation without doing something wrong or being hopelessly awkward or embarrassed? How do we as volunteers/service personnel ask what is wanted, or give the other person the opportunity to tell us? How do we as disabled people politely indicate the other person is getting it wrong and needs to switch modes or change what they are doing?

 

Cherry Foster

An Inconsistently Applied Assumption

“Isn’t Grandpa coming up the spire with us?” asked the boy.

“No,” said his mother, “He doesn’t think he’ll be able to manage the stairs.”

“He does the stairs at home,” said the boy introspectively, “And at his house.”

“Yes,” said his mother with a laugh, “But there are only 14 steps in our stairs, and there are 223 steps up the spire. It would be too much.”

“I see,” said the boy, nodding as he filed away this new and interesting fact.

 

 

“But,” the runner said to her new manager in dismay, looking up from her race schedule, “Those Marathons are on the same day. Didn’t you check the dates?”

“Yes, of course I did. But they are close together – you should be able to get from one course to another in time. So that will be three races on the 2nd, and another three on the 3rd. Should be fine.”

The runner looked blank. “I can’t possibly run six Marathons in two days.”

“Why not?” asked the manager. “You have a consistent finish time of less than three hours.”

The runner looked utterly bewildered. “But…” she stuttered.

She turned to her trainer, who had just come in.

“What’s this?” said her trainer. He looked at the schedule.

“Don’t be ridiculous. Of course she can’t run six Marathons in two days. It would be far too much.”

 

Three new students were enjoying their first field trip to a barely visible ruin. Most of the old walls were gone, their former whereabouts only clear from lines of darker grass, but periodically, a long ridge of a broken flint and stone wall still stood, running from one side of the site to the other like a miniature terrace.

One of the students, a girl with black curly hair, was using an electronic-assist manual wheelchair. She carried crutches on the back, but they looked new.

“Oh dear,” she said, as they approached the fourth of the walls, an impassable step for wheels. One of her companions looked at her in surprise.

“We can lift the chair over like we did the others,” he said.

“Yes, if you get out and use the crutches,” said the other student with them, who was wearing jeans and a floaty top.

The girl with curly hair shook her head. “I can’t keep on doing that. It gets too exhausting,” she said.

The girl in jeans looked at her crossly. “But you did it just now.” The boy nodded assent.

“I really can’t go on doing it,” said the girl with curly hair. “You go on without me. There’s plenty to look at back the way we came.”

“You’re just making a silly fuss,” said one of the others crossly, and they walked off.

The girl with curly hair sighed, and turned round to go back the way she had come. If she was fortunate, this would just blow over. If not – she knew well the spite and difficulties that would come her way once her fellow students had decided she was just pretending to get sympathy.

Her lecturer came striding across the grass. “On your own?” she asked. “I’m sure you were with some others a moment ago.”

“I sent them on without me,” she explained. “I can’t go on clambering over these walls on crutches. It gets too much.”

Cold, hard suspicion and anger entered the lecturer’s eyes. “But I know you can do it,” she said, “I saw you.”

 

Cherry Foster