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

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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

Simplicity or Accuracy – but not both…

Why I find it difficult to make simple requests about my extra needs

In the world of Ugg, dragon’s blood and eggs are part of the stable diet.

This particular alien, however, has something of an intolerance and has to be careful how much she eats.

On attending a conference, she finds the message hasn’t got through, and she has to explain to the catering staff at the counter, that she probably needs something else to eat.

“Well, I can’t eat very much dragon’s products,” she stammers out. “Less in the evening. Does this have more than a yiff or so in it?”

The staff don’t know. “Well, I would hazard it in the morning,” she hesitates, “But, well, a portion probably only has one egg in it? If you take the dragon’s blood batter off? That would probably be ok. I can take about five yiffs if I eat them early in the day, but not in the evening.”

The serving staff try to work it out, but they don’t do the cooking, and they aren’t clear what’s needed.

By this time the hungry queue is getting exasperated. Just make a decision. Just say you need something dragon-free. That’s simple. They should have dragon-free cook-chill meals in the freezer. That’s what they need to hear.

Yes. But if she says that she needs a dragon-free meal, when the staff or fellow attendees see her eating the dragon’s-blood cake for elevenses the next day, will they think, casually, “oh, she’s able to take moderate amounts sometimes, it was just simpler for everyone for her to ask for a dragon-free supper”? Or will they condemn her for malingering and being selfish and giving unnecessary trouble, and refuse in future to give her dragon-free food when she does need it, or do so resentfully and sullenly? Will they make her ill by saying spitefully that things are dragon-free when they aren’t, because they’ve decided that she must be lying about having a problem?

The other aliens are likely to jump the conclusion that she must be unable to eat any dragon products, on the strength of the fact that the easiest way for everyone of handling what she did need at that moment was for her to ask for a dragon-free meal, and that will cause her a lot of other difficulties.

As someone with an extremely complex disability, I don’t mind simplifying what I say about my needs to make it easier for people. What makes it difficult to simplify, and causes me to keep giving extremely complex descriptions which people couldn’t take in all at once even if they wanted to know, is that simple descriptions are inevitably inaccurate, and our cultural mind-set doesn’t allow for that. Simple descriptions and requests don’t and can’t represent the whole picture, but people usually suppose that they do.

As a result, when people with extra needs do simplify, the second the simple description doesn’t match the reality, there are generally people who instantly and angrily start accusing us of pretending. “I thought you said you needed… but you don’t, you wicked, horrible person, who doesn’t really have any extra needs, pretending in order to get sympathy/to the front of the queue/exam privileges”. Or – which is often worse – who respond to their assumption that we must be lying by clandestinely making sure we can’t get what we need.  People without special needs who don’t do this are probably not aware of how much it happens.

We can simplify when appropriate to make it easier for people: I think the discussion about how best to handle and communicate special requirements smoothly and efficiently is ongoing. But communication is necessarily mutual. Where people want simple, easy descriptions and requests, we need to ask in return that they accept that simple descriptions will be inaccurate, and that the automatic assumption, when we do or need things which don’t match what we’ve said to the letter, should be that our needs or difficulties are more complicated than we were initially able to convey in a few sentences.

 

Cherry Foster