Craftivism

Craftivism is a form of activism, typically incorporating elements of anti-capitalism, environmentalism, solidarity, or third-wave feminism, that is centered on practices of craft – or what can traditionally be referred to as “domestic arts”. Wikipedia

“We believe craft can be a tool for gentle activism. Join us, together we can change our world, one stitch at a time…” Craftism-Collective.com

I found out about Craftivism a few weeks ago. I have described myself as an activist for several years, working within the system and without it to improve the care and support provided for people living with dementia.

I was diagnosed six years ago, and had already become engaged locally to work with NHS Trusts and CCGs as a patient volunteer or representative. I did loads of meetings and saw very little change for the better.

Then dementia found me, and I found DEEP. This was eye opening. I regard myself as a disruptor, as I don’t like following the traditional, controlling rules of engagement, governance, status quo, and publicly supporting organisations I fundamentally disagree with.

So I have been a disruptor, blogger, activist, whatever, for a decade. And what have I achieved? Some raising of awareness of dementia and other patient care issues. And very little change. And I have had enough of most of it.

So along comes Craftivism. As I understand it, though I may not be right on target, craftivism is about creating crafty things, making, painting, printing, drawing, sculpting, carving, and using these things to speak for you. To gently promote what it is you want people to know or understand or do.

Great example: the old fashioned Banners made by a number of DEEP groups up North (duck) which illustrate an aspect of dementia, but are just beautiful artistic creations. They don’t shout, or stamp, or sit in meetings. They just exist for their own sake. And they speak louder than many words do.

I suppose they ought to sit in meetings actually, all around the walls, to remind decision makers that we exist!

So some of us crafty people in DEEP got together, or rather were brought together, to see if we might become craftivists ourselves.

One of us paints beautifully. Another is just ridiculously good at crafty things like card making, embroidery, carving, bookmarks, and making fairy houses/villages from largely found materials. I have taught myself to whittle and carve whistles of all sorts and sizes, with personalised designs or images.

We are starting to make artistic or crafty creations to give to people, to publicise our message. We may leave things in public places, libraries, shops, on benches, in parks. And we will add a label or inscription that says something like…

‘You’ve found a gift made by a person living with dementia. Enjoy it or pass it on to a friend.’

Simple as that. Nudge theory perhaps, though Dom has nothing at all to do with it. Gently letting people know that dementia does not incapacitate you suddenly. We can still learn skills, make lovely things, and give and have pleasure. We do not all sit and stare at a TV or the wallpaper, dribbling, immediately after our diagnosis. Or probably ever.

So I am thinking of making some simple whistles to give to a local primary school class. I could establish a real rapport and understanding on and with these children, and they would take the whistles home, show parents, friends, neighbours.

Gail, near Blackpool, is making bookmarks and leaving them in places around her area, such as on the steps leading down to the sea.

I have a project at the moment making a large group of people (can’t say who as they might possibly read this), for a celebration event. Each whistle is personalised to a person’s interests, job role, or some funny event. And they will all know their whistles were made by a person living with dementia.

Now, I started whittling at the start of lockdown, four months ago, and I am learning the skills needed to make whistles, chess pieces, all sorts, with little carvings on them. I am 69 and have dementia.

You can teach an old dog new tricks!

The act of creating is a wonderful way to focus the mind, to block out all those annoying thoughts and anxieties, the calendar to do list, and the what ifs. I just focus on turning a piece of wood that I found on a walk into a whistle and/or a carving.

It’s tiring, mind. That sort or concentration (and standing) can leave me drained. Time flies by. Lupin barks after a while to let me know she wants attention.

So Craftivism has several wonderful benefits. It can also be a group activity, either face to face, like making a rag rug, or each person remotely making part of a finished thing. Like the squares being made by DEEP people to go into a massive blanket. That will be a wonderful craftivism creation.

Craftivism is a sort of social movement, in which the personal narrative is in the artistic creation, which speaks for itself. It’s gentle, beautiful (usually), and a great communicator.

When we get back to face to face meetings we should all lay our creative skills on the table and make things to share in our communities, including those decision makers.

Turning the tables

The brain disease that causes dementia prevents the brain from working as it used to, or as it should do. Billions of calculations and processes happen in a healthy brain without us thinking actively about them. So when you make a cup of tea, or type, or drive the car, you don’t have to think about each little step of the process.

When parts of your brain stop working correctly the functions and processes that these cells control stop working correctly too. So don’t be surprised if you find you put coffee in the teapot, leave the kettle to boil dry, or drive through red traffic lights.

And don’t be surprised if your thoughts don’t come when you want them to.

Classic mistake. Ask someone with dementia what they did yesterday! If they have had a drink today. Or how they feel about something.

What would you like for dinner?

What would you like to do today?

How do you feel about covid?

Do you think we should choose x or y?

Let’s move on to the next item. Now, what do you think about this?

There are very few facilitators (or chairs) of groups (or committees) who do not ask direct questions, as if people living with dementia can just come up with answers without thinking. Most conduct dementia meetings and groups as if they were just everyday groups.

DEEP is the only organisation I know of that has mastered the approach where we contribute in our own time, perhaps randomly, when and if thoughts appear in our struggling brains. It is an incredible skill, and requires huge patience and a totally different approach to talking to people. The tables have to be turned. Group discussions become about us, not about the facilitator or organisation. They give control to us.

I have sat in more meetings than I care to remember in which the Chairperson has banged through the agenda without giving members opportunities to reflect, to enquire, to discuss, to voice ideas, possibilities. They have their agenda items and they are going to get them done.

They hit their target and miss the point.

Now, if everyone round the table, or screens, has fully functioning brains with similar capability, a one size fits all approach is fine. But, unfortunately life ain’t like that. And nor are our brains.

I mean, why do we have different sets or streams in schools for grouping children with similar abilities? Why do some people become managers and others plumbers, some doctors and others porters? We are all different. Pit them together in a group and, well, you have a very mixed ability group. And teaching mixed ability requires utterly different approaches.

The same really is true of adults, whether they be 30, 50, 70 or 90 years old. We are all different. Add in diseases and, well, you can see the absurdity in regarding everyone at the table as equally able to process and think and make decisions at the same speed and with the same approach.

Some people learn by doing, some by remembering. Some reflect and others jump in. Some are introverts, others extroverts. Some brains work really well, others do not. Some are concert pianists, some gardeners. Many of us do not achieve what we really could have because we are damaged in some way. Many of us do not develop the brain connections needed for complex tasks.

We probably end up in jobs which suit our brains and our personalities rather than jobs which we might dream about.

Facilitating groups or committees is a hugely complex, skilled job.

Facilitators must put aside their personal feelings and experiences and agendas. They must leave their baggage at the door. They may have expectations set for them by others. They may think they know answers and outcomes but want confirmation from the group. They may tell everyone (or just themselves) that they have to get through the often long agenda by a set time. Or they meeting will go on until a decision has been made.

All ways of destroying engagement, reflection and good decision making.

And, of course, ignoring the absolute certainty that everyone round the table is different.

So, back to dementia. Here are some rules for facilitators or chairpersons.

Rule 1. Don’t ask a person with brain disease a direct question.

Rule 2. Don’t give a person with brain disease more options than they can deal with.

Rule 3. Allow a person with brain disease as much time as they need to think, wander, reflect, return, distill, and speak.

Rule 4. Don’t make a person with brain disease wait more than half a minute to speak, when they have something to say. They will or may forget by the time you call on them.

Rule 5. Do not have a long agenda. Keep it to two or three items/subjects.

Rule 6. Do not add new items during the meeting, which people have not had the chance to think about in advance.

Rule 7. Do not table papers at the meeting. Send them out several days in advance. Do not just apologise for lack of notice. Don’t do it.

Rule 8. Do not invite people to give long or technical talks/presentations to a group of people with cognitive impairment. It just doesn’t work.

Rule 9. Don’t use jargon, acronyms or technical terminology. Yes, it’s difficult, but you can do it.

Rule 10. Allow lots of thinking time. Perhaps drinks breaks, or just inviting reflection. Chit chat. Laughter. Recap what has been said frequently, at least every five minutes. Keep asking if people need further explanation or repeats.

Rule 11. Don’t regard it as failure if you don’t get through your (short) agenda. People with brain disease go all over the place when they get together. They enjoy sparking at random and you will often find you open a box of fireworks which you cannot extinguish. Nor should you want to! Allow people to go where people want to go.

Rule 12. Don’t be patronising.

Rule 13. Get over yourself. It’s not about you. You are simply the coach, the explorer, bringing all these treasures out of darkness into daylight.

There is nothing in this world that compares with the pleasure of seeing a child or adult realise that they matter and that they can speak and be listened to. People with dementia often withdraw after diagnosis and believe, because they are led to believe, that their lives are over. As a facilitator you can bring them back, and nurture them into new and often different people.

We often say we have more friends now than ever before, and that life is more fun now than ever before. We do things we only dreamed of, or didn’t even conceive were possible. Dementia is not a gift…far from it. But it is a new world.

The tables are turned, and you need to turn with us.

Egos and introductions

Well. I recently took part in two Teams online meetings. It was a new Equality and Diversity group at a local NHS provider. I won’t give more detail here.

But the meetings were meant to be inclusive, for people with disabilities, BAME and LGBT, and included of course me, with dementia.

Now I still handle meetings reasonably well, and I always stop and ask those who rush or speak too fast to slow down or say it again.

So we start, and the chair goes straight into the agenda. No introductions. No hellos, how are yous. No where are you coming from, or why you joined the group.

So of course I stopped it and asked for every person to introduce themselves. Taking up, oh my God, ten valuable minutes.

Then the agenda items. Two leading players from the Trust rattled through whatever they wanted to say, but did so using 500 words when 200 would have sufficed. And far too fast. Many Handcock and Johnson type false hopes and achievements. I could say misstatements?

I had to stop them and ask about acronyms. (Oops.)

We had about 12 people on the call, and several did not contribute, for whatever reason…but the chair did not encourage them into the conversation. It was purely transactional, on her agenda and terms. Get the business done, get our stamp of approval, and that’s it.

I actually said in the first meeting that the group should be contributing what each of us, coming from different ‘places’, felt was most important to address at the Trust. Rather than being told what they wanted. Otherwise what was the point? I also told the chair that she was conducting it like a face to face business meeting in a rush, with staff who knew exactly the context of the business.

After two meetings following this same pattern, including my interruptions, I was so pissed off I resigned. And I sent a full explanation of what they were doing wrong.

To her credit, one staff member, not the chair or the other rattler, wrote back a full apologetic letter and invited me to stay. But I will not.

….

Then today people on a DEEP Group Facilitators Zoom call talked about group dynamics. We’ve often spoken about those few group members who tend to dominate, who are not self aware, and who probably never have been. They drown the others, especially those who find communication hard. This can happen in virtual meetings too, where body language and frowns, etc, are less obvious.

People are people, and we have to accept them for who they are. But as facilitators our job is to ensure that everyone gets a chance – and encouragement – to speak up. We should not do all the talking, or indeed control activity or subjects; that is for members, all members, to decide.

So how should we behave in meetings, and how should we run meetings?

No one has a monopoly on wisdom or experience, but these are my ideas.

Deep groups, whether face to face or virtual, are based on the principle that they are run by people with dementia for people with dementia. Members are self chosen, and if they return they clearly find the group to their liking. The only criterion is that you have a diagnosis. Although, of course, some groups include those providing care and support.

You know my feelings about that, as carers very easily take over and become the voice of the person/s living with dementia. We never know whether it is with consent, but I suspect it is usually just habit.

But just as carers can dominate either their own partner or indeed the whole group, so also can plwds. We all believe in inclusion and accessibility, fairness and honesty. So we need to be honest if a person starts to dominate. Not just move a few big egos away into a separate space, but actually discuss what they are doing. It might be their disease, or it may be their habit. Either way it is not acceptable. We must teach patience and tolerance where these do not exist!

I used to teach, and the ethos of bringing people out of their lack of confidence, encouraging them to find their voice and speak it, has stayed with me. This also applies to passing on opportunities for engagement outside the group. I have found that by gently coaching and rehearsing with a person they find they can speak in public about their dementia, and they blossom in confidence and activism. It is the most rewarding experience for me to witness.

I suggest we should not separate into those who can communicate and those who cannot, those with big egos and those who are quiet. We should instead concentrate on helping and encouraging others, and hold our own egos and talkativeness in check. It takes a lot of thought and reflection, but the group will thrive as a result.

We need to remember that people may well have forgotten who the others are, even a week after the previous meeting. And in a business type meeting, we need to speak up and demand introductions all round at the start. I think the DEEP zoom practise of allowing 5-10 minutes of good humoured chatter, and then going round each person for how they feel, and what they’ve been up to, is how all meetings which include plwds should run.

We also need to have frequent pauses, reminders, recaps, opportunities for questions. As well as the yellow cards throughout!

But it is up to us to educate others about these things. I have resigned from the group I wrote about, because I have decided that my negative anger after the meetings makes them not right for me. I have said before, surround yourself with positive energy, people whose company you enjoy, doing things you want to do. No more ‘shoulds’ and ‘oughts’!

Those meetings also reminded me of the eight or more years I spent there on the patient involvement panel! Totally pointless! I mean, none of the action points from the first meeting had been done by the second! By the paid staff! WTF?

There are some fabulous facilitators, who really do just facilitate. They don’t dominate, they don’t get off on controlling the group. There are other groups where we know they are dominated, whether by the facilitator or a member. We must challenge these people, in a positive way.

We need to behave in the way we want others to behave. Be the change you seek, as I think Ghandi said.

This is a social movement thing. It’s also perhaps a socialist thing. We look for equality. Fairness. Our values must be those of respect, inclusion, tolerance, and honesty. If we can embrace these we will have happy groups and happier lives.

It is far more difficult to keep quiet than to spout. It’s hard work, and it’s a skill you have to learn. We will get our turn, and so must all the others.

Remember, we can all be teachers.

Too much on my plate

Please stop me from taking on too much.

Just ask me if I really want to do something, or have the time and energy to do it.

If you know me well enough there will be times when you must just say no, not now, wait a day or two before deciding, or do it next month instead.

Yesterday and overnight – another night of vivid dreams and wakefulness – I realised that I have become embroiled, that I have been overheating, and that I have begun to find familiar activities more difficult. Temper temper too!

I had one of my sweep moments cooking the other evening. That’s when I can only see in front of me a chaotic mess that I am urged to just sweep away…onto the floor. It’s my way of clearing the decks of clutter when I can’t see the wood for the trees. (Mixed metaphors abound)

Just sweep in one big dramatic whoosh.

Well I have so far restrained myself, and walked away for a minute, come back and (fairly) calmly put away what does not belong there, clear it all, and start getting out ingredients and utensils.

Yes, it’s that bad. And to cap it, yesterday I also overheated. Began to sweat. Not sure if I was hypo or what. Wondered about Covid. But unlikely now, and I have met hardly anyone.

Yesterday I had two zooms. Both 90 minutes and requiring concentration. Half way through the second I drifted, and was grateful to others on the call for helping out, as I was chairing!

….

Last night I dreamed that I was on my old bike, the old fashioned sort of sit up and be comfortable one. I had gone out early for a ride because I needed space and light and felt just tired. I rode and rode, listening to a book sitting in the front basket being read aloud as I went.

I stopped after some time. It was a local ride, though in very different surroundings. The rear tyre was flat. Easy to repair. So I set to work, on the side of a swimming bath, (don’t ask). Took part in a radio game show while I was there, a comedy thing which I did well in. Amused people.

Then returned to the tyre. I couldn’t seem to quite get it done, just kept moving parts around, unhappy with the awkward place where I was perched beside the water.

Terry Wogan had died. I was asked what I thought. I wondered whether he was just a natural talent or whether actually he had to really work at it to keep it flowing. But the interviewer said people didn’t want to hear anything negative about him just now.

Then I set to again with the tyre. It was not going to work. The inner tube was decayed. Too old. Repaired too many times.

My wife arrived. She waited and waited for me to get the job done, which I continued to slowly mess with. I couldn’t do it. So she put it in the car and we left.

A little later I asked if she had put the bike in the car and she said no, she had forgotten it. Left it behind.

Then we had to fill up with petrol, and I woke up

….

Pretty self explanatory I think. Given the way I had been feeling. I am the bicycle.

It’s given me a less than happy mood today, but also an awareness that I must stop myself from getting carried away. I want to do things. I get enthused. But then I get – more often as time drifts past – overwhelmed by commitment and complication. I need simplicity.

I need to get back in my shed and carve whistles. Weed the garden. Pray to my sunflowers. Walk with Lupin. And do a few fun zooms.

So, please, if you see me offering stuff, offering to do this and that, committing here and there for projects, just quietly ask me to pause and reflect, and even ignore my commitment sometimes. I get carried away, like many others, beyond my declined capacity, and end up with too much on my plate.

And oh yes, I also eat too much, especially when feeling tired and stressed. In the evening. Fresh bread and jam.

Too much on my plate.

What screws your brain?

What causes the switch to flick over to chaos? Out of the blue.

When you’re not looking. When you’ve got up and going and all is well…and suddenly…fog, chaos, anger, Big D.

For some of us the fog lasts for days or weeks. For others it’s just a few hours.

It may be the fog that blankets clear thought, decision making, impetus to just do something.

It may be a headache that refuses to go away and overtakes your mind.

It may be an outburst of anger, frustration.

Perhaps you cannot see what you are looking for, even though logic tells you it must be there. You grope around. Shuffle bits and pieces. Shut your eyes and take a breath. Walk away for five minutes.

One minute you can carry on with your activity, sequencing steps, finding equipment, utensils, ingredients, tools…the next something has blown a fuse and you’re groping.

It might be noise that does it. Like clattering if cutlery or pans and plates.

It might be being interrupted while you’re working’.

Can you just do this?

(No I bloody well can’t because I can’t think of two things at once. And because I am focussed on this.)

You return to your work but that switch has, well, switched.

And you suddenly see a chaos of buts and pieces in front of you. And you want to sweep them all away, onto the floor. Bloody hell. Aarrgh. Shit. Bugger.

You might of course just wake up in a fog. Fuzzy eyed, weary, not sure what to do.

If you’ve got your wits about you, which is doubtful, but you may just grasp a memory from the last occasion, you remember that the best thing is to get a mug of tea and sit down in a comfy chair and just slowly, gradually, emerge into the daylight.

It doesn’t matter about the two or three hours that go by. Just relax, breathe, and slowly emerge from that chrysalis of foggy fuzz.

This is dementia. This is brain disease. This is how we are, and how some of our days are.

And we learn to live with the fog and anger and confusion.

Writing about it, in a blog or diary or journal, helps you learn the tricks you use to get out of it.

And it gives you somewhere to find your own way of dealing with Big D, next time the fog descends.