Fitting in normative time when working in crip time can cause jet lag

 Crip time, as defined here, is a

"flexible approach to normative time frames" 

https://dsq-sds.org/article/view/5824/4684

For me, it has meant having to negotiate and educate people and organisations that I am not being "lazy" or "slow", but that time just works differently for me. I often feel like I am in a different time zone, where notions of meeting deadlines, or doing certain amounts of work in a certain time frame is impossible. Unlike others my concept of time has to take into account my condition, and how it fluctuates in and out of needing time spending on caring for and maintaining my wellbeing. 

I read somewhere once that you can either have days where 

you can just go into the kitchen and make a cup of tea, (a 2 step day)

or days where

 you have to spend time and energy to movtivate yourself into the kitchen, then you have to find the cup, the spoon, walk to the fridge, get the milk out of the fridge, put the milk on the counter, pick the kettle up, fill the kettle up,  carry it back, put it on, wait for it to boil, pour it out, put the milk in and the tea bag (i dont drink tea so Im not sure o nthe right order :), stir it together with the spoon, wait for the tea bag to work and then carry it over, sit and drink it (a 20 step day)

the emphasis here is on how each of those steps are a usually unconscious part of "make a cup of tea", but for disabled people, sometimes, it is not that simple, and each step takes a great deal of energy and should be recognised on its own as an individual task. On a 20 step day, I am going to take longer to recover from every activity I do, because every activity takes more energy to complete and accomplish. Using the making a cup of tea analogy, sometimes those of us working on crip time have become adept at creating ways of working that cut some steps out and make us more efficient at tasks, not that we can acomplish more, just to make the task possible to complete within our own capacity. Drinking the tea without milk (or using a long life milk capsule) can cut a few steps out, putting the cup or the kettle next to the sink and filling it as we go past another few steps, you get the idea. 

This is all very well when working alone, without having to bump alongside normal time, but when you have to work within normal time, especially when normal time is fixed and unmoveable (like a university deadline), you have to get creative or risk getting jet lagged.

What I have found is that although it takes additional labour it can be a useful exercise to spend time trying to blend a normal time organisational strategy within crip time. As I have spent so long studying in higher education I can usually work out a good conversion.

Converting crip time to normal time takes practice and creativity. It also involves a lot of honesty and awareness of one's own capacity and working styles and speed.

The first job, as I did above is to break the task down into it's tiny parts. 

Next it's time to look at the tasks themselves to categorise them into different types. There are fixed time tasks that have to be done in a certain order, tasks that can be completed at any time, tasks that can be crip-adapted, and tasks that can and should be done differently. 

I then assign each task a rating of red, yellow or green, depending on how easy it will be to complete on different days. The red, yellow green rating is based on my mental energy, but it could be anything that is the biggest barrier to completing the work. 

Now as crip time is different, I try and assign each task it's appropriate crip time frame, which includes recovery, breaks, and my own working speed. This is more realistic. Instead of saying

"I'll spend an hour researching papers." 

"I'll spend 5 minutes reading my current progress notes"

"I'll write 5 search terms from those notes" (3 minutes)

I'll take a short 2 minute break to make sure I'm on task and check in to make sure I'm still ok.

"I'll do between 5-10 minutes of searching on the main uni library database, downloading anything that looks interesting in the first few sentences of the introduction". 

Break time so I don't get frustrated and overwhelmed with searching. completely doing something different and easy. Although my mind likes to wander during this time, I'm giving it time to wander and reflect on the process and how it can be improved. (15 minutes approx)

I'll spend 5 minutes reviewing the search terms and the articles to see if I can refine them any more than I have already for future searches. 

So my hour of work is broken up into crip time consideration and normal time consideration. It can get frustrating to be slower than my peers but this is not a competition, it's my own progress that matters. Some days I can do more than an hour, sometimes I can only do an hour.

So converting and working in both normal time and crip time together means that I am able to continue to work, even slowly on my bad days. It usually means I can keep some pace with my peers because I'm able to find something to do on most days. When it gets closer to deadlines though, especially when the task variety reduces and becomes harder is when it becomes challenging. Of course, there are times when crip time doesn't just "take priority" over normal time and it's demands, it takes over completely. It's why I try and make sure everything I do is not left at a point that I can't pick up days or weeks later. Every task has to have an end point, or at least a note of what to do next.

starting a research project- searching for a needle in a haystack

 I have tried to start searching for some research papers, or anything similar to what I want to base my work on. This is always a difficult task. It involves finding the exact keywords that someone else has also used on their work to describe what it is that they were researching. Even though I am trying to find out information on what happens when student assignments are considered narrative, and also creating a student journal based on student assignments (as a demosntration of student narrative) I can't just type that into a search engine and find it (although that is obviously the first attempt). 

The problem is that student assignments about narrative come up, as do lots and lots of other things about strudent assignment curriculm structure, creating a student journal as in a blog, and lots of other irrelveant things like that.

The trick is to keep searching, keep narrowing down what it is (and it is'nt) your searching for. You may think you are searching for lots of different articles or papers, the more the better, but actually, really, to start with, I only ever am searching for one. 

As soon as I have one, that I can anchor the rest of my searches from then it makes it so much easier to go forwards. The artcile itself will have lots of references in it that I can use to get more papers, and by reading it, will give me lots of linguistic clues to use to find more work of a similar nature. 

That is the needle in the haystack, the one thing I need to find to help me start. It helps me to reframe this part of the task as this, because it makes it less overwhelming to start with, and a bit more fun, because I am just bashing out lots of different words into google and the library search to see what I find, and then Ill just download the ones that I like the look of the abstract. 

Thats my other thing, I tend to work by separating the tasks I need to do down very carefully. Im not particularly well at the moment, so I know that I can't do much reading (or to be more accurate listening). What I can do is searching, and also preparing those articles to be read by a text reader when im well enough. 

Everything is separated as muich as possible so I can complete things in small chunks in small pieces of time, dpeneding on my ability at that time. 

What does healing mean?

I hope this helps some people rethink what healing means 🙂

If we only consider healing in a very medical sense, being completely cured, we can miss out on other ways to be healed that doesn't mean complete cure. Let me explain.

The social model of disability was made as a response to this medicalised view of our lives and that all the problems we have when we are ill or disabled come from something wrong with our bodies. It suggests that actually, we are more disabled by things outside of our bodies including other people's attitudes, Physical things and environmental things. So what the social model does is split the two things up and call them different things. Impairments are what is different about our bodies that may need medical help or treatment, but a disability is a man made thing that affects how our different bodies interact with the world. 

This was a great idea, because it meant disabled people could have something to fight for that unites them, and can make life better for all different bodies. It shifts the blame (and the solution) back onto society to change and include all bodies however different they are.

So for me personally this idea was very healing, because it meant that a lot of the bad stuff I had faced was no longer because of me, but because society wasn't set up for me, and it was them that needed to change. If a disabled person who needs a mobility aid finds a building only has steps, it's not their fault that they can't walk up them, it's the fault of the building for assuming that everyone can walk up stairs. If a disabled person can only work 2 hours a day before becoming tired and needing to stop, it's not the fault of the disabled person that the world of work expects a 7 hour day, or a 37 hour week. I also have come to realize that this goes both ways, and that I can also make changes to the way I live to make it easier for me that doesn't involve following "the rules". If it's easier to use an electronic can opener, it doesn't matter, the can still gets opened, or in my case, actually gets opened! ( That's because I'm left handed and can't open cans with a tin opener!)

So that was the first thing I learnt about looking at healing differently when I was doing my degree. The next thing is something I'm looking at now on my postgraduate degree. 

Whilst this idea is about mental illness and wellbeing it can be useful for everyone to think about it in relation to healing even if we can't be "cured". 

The idea of personal recovery in Mental health means living well within and despite limitations that are imposed on us, or because of our different bodies (this includes brains!). It's about finding meaning and a purpose in life that might be new or different to before illness, but is still just as valid. Recovery is about a whole person, and a whole life journey. It's about finding hope in the darkness, and remembering that even the tiniest flame can burn bright in dark times. Linked very close to this is social inclusion, which is very important in the recovery idea.

We can't do this journey alone, we need others to support us, and we can also support others, in a 2 way exchange of interconnection. We also need others to socialize, work with and to serve and be served by. 

I hope you can find new meaning in what healing means with these ideas and perhaps see that God is healing your life, perhaps not in the way you expect.

Teach a man to fish...

The saying goes if you teach someone to fish they will have food for life. No-one really thinks about the person who taught that person to fish, and what that can teach us about interdependence and the benefit of compassionate works. 

Learning to fish is not an instant thing, so it could take days or weeks of patience and getting the technique just right. Whilst this happens, the two people become friends and share whatever fish they might catch on that particular day. At first then, both benefit, as both don't go hungry. This is great, as it means that even if the person teaching has a bad day of fishing, they will still benefit from having an extra person around to share the reward with. 

As the student gets better at fishing and understanding how to fish, something else happens. Imagine for a moment that this person is not skill less, just not skilled at fishing. So this person who is fishing all day realises that with their engineering skills, they could improve the design of the fishing rod, and the other equipment. 

They do so, and share this with the teacher, who then benefits from a better rod and gathers more fish, so both benefit.

then imagine if the second person starts telling everyone they know about how great a teacher this person is, and all of a sudden, you have a whole network of people sharing their skills together and the results of those skills. 

So you could have a chef, who learns how to fish, but also teaches everyone how to cook the best fish, or an entrepreneur who shares with everyone how they could sell any fish left over and create a business. Or someone who understands chemistry and shows everyone how to keep their fish fresh.

All from one person teaching another how to fish. You dont just feed that person if you share your skills with each other, you can benefit everyone.

I love learning but I am tired.

 I love learning but I am tired. 

I spent ten years at undergraduate level trying and fighting to get my degree. I encountered systems and structures that were discriminatory and impossible for a disabled student like me to work with (or around). When I finally achieved my degree it was a first class honours degree. My final year dissertation had one of the highest marks of the year and is now published. That was thanks to a team of tutors who were willing to work with me, around the system to allow me to thrive and it was then I found my love of learning. 

Since then I have spent six years trying to achieve a post graduate qualification. Once again I found systems so rigid I was forced to quit. It was not quite discrimination, within the letter of the law but it was the spirit of discrimination that I encountered. It wasn’t that the universities and systems were actively ableist, its just that there was no action to counter any ableism I encountered or willingness to work with me. Whilst there was a very legitimate reason for leaving one of my post graduate courses, I didn’t really have a choice to leave the others. 

I am currently on my third or fourth last chance, I forget and lose count. This course is perfect for me, and I am really really enjoying the studying and the community I find myself in. I have the flexibility I need to achieve what I want. But, and there is always, it seems a but with me. I had to restart my first year, again, through a combination of ill thought through choices and consequences that I may or may not have been aware of (and coronavirus). I am currently writing (and should have finished last week) an essay I started writing this time last year. I was so determined to finish it before Christmas.

However, now I find myself once again unable to focus on my learning because I am having to put all my efforts into fighting a funding system that isn’t willing to accommodate or be flexible with me. I don’t know at this point if I will be able to afford to continue the course, it all depends on a funding decision, which because of Christmas and coronavirus is going to have to wait. This is my last chance to get a post graduate qualification. I can’t see me getting another. But, despite how much I am enjoying the learning and the writing I am really tempted to just give up. In some ways giving up before I am forced to give up is better, at least its my choice. But its not fair, or right that I should be in this position. I know I can study and achieve at this level, but I am just not being given the choice and the support to do so. Even though its not discrimination, it still feels discriminating, especially when I think of all those other students I have met along my way who are now qualified, working or onto further study. I just want to study and to learn. That’s all, its not hard is it?

Being grateful not greedy

 Being grateful not greedy…

So often I hear that Christmas is about giving gifts and not receiving them. Whilst that is true, I think it often overlooks the beauty of getting a gift, whatever that might be.

Even Jesus was grateful for the gift of expensive perfume despite what others around him said. He appreciated the gift and it's significance probably more than the gift itself.

I think this is best demonstrated when a child gives a gift. My 6 year old daughter doesn't have any money, or access to it (I remember once we were in Poundland and she picked a mother's Day card up for me, but didn't know how to pay for it, so I did!) So if she gives me a gift, whether that's a rock, a leaf or even a grape I am really pleased to receive it, because it means so much for her to give something away. It might not have any worldly value or even mean anything to anyone else but it was so important to her, and she chose to give it to me.

I'm not expecting gifts this year for Christmas particularly. It's been a difficult year for everyone. So when I do get a gift, even if it is not what I want or need, I'm going to try and remember to be grateful for it.

Behind the gift I'm given and the gifts I'm giving, is love. Someone loved me enough to give me something. They spent time and thought as well as money on me. I wouldn't refuse any of those things or be ungrateful for them, so I'm going to try and remember to do the same for anything I receive this year. 

Harry Potter and the aftermath

Harry was struggling to cope with the enormity of it all. Whilst he was happy enough during his time at Hogwarts, he had never known pain or sadness like it. He had tried ignoring the pain, sadness and anger for fear it would render him a gibbering wreck but his efforts didn’t seem to be working. Or that was the opinion of Hermoine, and she was always right.

He had been visiting Molly Weasley in secret, during work hours, on the pretence of investigating a dark wizard in the general area. His work performance was pretty poor, but as he had killed the greatest dark wizard of all time, the other Aurors didn’t really notice. His position at the office was more ceremonial than anything else anyway. Harry didn’t really need the job anyway. He had signed an exclusive deal with the Weasleys Wizarding Wheezes shop, now run by Ron and George, which meant they could sell “official” Harry Potter items, in exchange for Harry receiving a small percentage of the profits. Harry particularly liked the mini flying Harry Potter on a small broomstick, like the one of Victor Krum destroyed all those years ago by a jealous Ron. He wasn’t so keen on the exploding wands named after his battle with Voldemort, but it was popular so he allowed it. 

Unlike the other Weasleys Molly seemed to understand Harry. She was always happy to see Harry during the day, as she was lonely now her children were either at school, working or… gone. She had added Harry to the family clock, which Harry loved and hated at the same time. He knew there was only a space there because of him, because of what he had done. 

They appreciated each others company, and often that didn’t involve the need for words. Harry was as happy helping Molly with the chickens or de gnoming the garden as  sitting listening to the wireless or just having a chat over a nice drink he had often been sent as a gift. 

That day though, Molly was sitting at the kitchen table. It was empty and scrubbed clean. She seemed different somehow thought Harry as he walked in. She looked more serious and sat differently. 

“Sit down Harry” she almost ordered. 

Harry sat down, not daring to speak. He felt that Molly had not finished talking, but had merely paused to allow Harry to sit. He did so, the chair felt more noisy than usual as it scrapped across the kitchen floor. He pulled into the table, resting his wand upon it. Molly continued.

“ Harry, Harry, Harry.” she paused to reach across the table and grabbed hold of Harry's arms. 

“ Not many people know this about me, but before I was pregnant, I was training to be a healer at Saint Mungos. I was fresh faced, just out of school and full of all these ideas. I was really good at it too, according to my teacher. Perhaps though, a little too good, or perhaps I should say different. I was very much like Arthur back in those days, into muggle healing techniques as much as wizarding ones. It was very much frowned upon though, just as it is still. I did my final project on it. How we could use the muggle ideas around mental health and illness in the wizarding world. The treatment then at Saint Mungos, and it hasn't changed much even now, is to simply perform a spell to counter whatever it is that isn’t working. You know, if you were depressed they would admit you for an intensive course of laughter therapy, chuckling charms, tickling charms, that sort of thing. 

Unfortunately though, for people like you, they may simply take away the memories that are causing you pain.” 

She stopped. It was the first time this fact had been acknowledged out loud between them. Although this was an unspoken truth, Molly felt it could no longer remain so. As she looked over at Harry, whose cheeks were now being flooded with silent tears that had been waiting to come for many years. Molly stood up and guided Harry to the sofa, she did not speak further, but pulled Harry into her. She had said enough for now. She didn’t want to overwhelm Harry and waited for him to cry for as long as he needed to, and to speak when he was ready. 

Harry sat, enveloped for what felt like forever, but was only 2 minutes before he spoke. He was worried he might not be able to stop when he started, but he didn’t feel able to hold it in much more.

“I had been tempted to go to Saint Mungos, to get rid of all the pain. It sounded so simple. But then I remembered, and I remembered and I don’t think I could stop remembering, even with the most advanced memory charm there is. And I’m not sure I want to stop remembering. But it hurts Molly, I really hurt. How can I hurt so much?

Molly had no answers for him directly, because she too was hurting alongside Harry. However, she felt able to offer Harry help, so she continued.

“I was kicked out for this idea Harry and disgraced. It’s why I get so worried about Arthur dabbling in all this muggle stuff. It's dangerous. It seems both wizards and muggles are scared of things they don’t understand even if it might do them good. Dumbeldore though, he was impressed with my idea. He thought it might work but he wasn’t as powerful back then as he.. Ended up being.” 

She paused, out of respect for Albus Dumbeldore.

“ Anyway” She said, bringing herself out of her thoughts. 

“ Albus had read my paper, and approved of my technique. I don’t think that any memory is so bad it warrants being erased. Bad things happen for good reasons and they are just important to a person as good things. The problem comes when it is all consuming. Muggles like to talk about those bad things, because by releasing them from our minds it stops them from being trapped there. They are talked about, and it helps muggles to think about those bad things differently. Not always as a good thing, but just not as a wholly bad thing either.

The problem, I think, was the danger, and the time. It was felt that my idea would take too long to work and that by the time a person was in a better place, they could have got even worse in themselves, and irreparable damage done. Not much is known about the mind, either from muggles or wizards. No-one's ever really bothered to do much about it. Everyone has just stuck to their ways and that's that. I think it came down to money too. It was a lot quicker to fix a person with magic than by messing around, like they called it. However, I had seen the ward at Saint Mungos that they kept hidden, the ones, like Gilderoy Lockhart, who have been left with no memory at all.``

Molly sighed, as though this was itself some sort of release. To be able to finally disclose to someone else what she had done, and why she was no longer able to work in the magical world. She hoped Harry would agree to her plan, even though she was terrified he would, because of what it would involve.

Harry sat on the sofa with a puzzled look on his face. He was certainly intrigued, and Molly had hit upon the one reason he was worried about getting his memory modified. After his experience with Lockhart, he was always skeptical about the idea of messing around too much with memories. He was interested enough to want to know more.

“What do you mean, Molly, you haven’t actually said what you mean?”

Molly stood up, and went over to the bookshelf in the corner of the room furthest from the door. She reached up and pulled a book, the title of which Harry couldn't see. 

All at once the books on the shelves grew wings and started to fly up around Molly's head and the ceiling. Once the bookshelf had cleared, the shelves themselves flipped downwards and became panels into what was now a door, with a small golden handle that had appeared on the right hand side of the door. 

Molly reached for the handle, pushed it down and pulled the door open. Harry had to shield his eyes from the light beyond the door for a minute as whatever it was beyond the Weasleys front room was much brighter. 

When they had made their way inside, and Harry's eyes had adjusted, he could see they were in a small circular room, that had no visible windows, and only the door, which had now disappeared, once again becoming a wall. Harry naturally looked up towards the source of the light and at the top of this tall, almost church like room was a glass roof, which was letting sunlight stream into the room at an almost unnatural pace. 

When Harry finally looked down and across at Molly she had sat down on a dark wooden circular bench, which stretched across half of the rooms wall. It had squashy cushions and even though it was very much a bench it still looked inviting. There was nothing else in the room that Harry could see. At Molly's request to sit down he crossed the small floor, which he noticed was an intricately marbled pattern of dots and squiggles. This room felt very out of place in the Burrow, if indeed thats where they still were. 

Once seated, Molly smiled at him, and asked him

“Are you ready?”

Of course Harry was ready, or so he thought. As he nodded, a circle in the marble floor appeared and segments started to disappear to reveal something that was making its way up into the room. As soon as it was half way up Harry recognised it at once. 

“Is that? No, it can’t be? Did Dumbeldore..?”

Molly finished Harry's half started sentences for him.

“Yes Harry, it's a pensieve, but it's not Dumbeldores. However, he did give me this one, he had two, not that anyone knew that of course. He believed in me and my idea, and told me that one day I may need to help someone. At his request I have spent my time working on my ideas in secret, with his help of course.”

Molly opened her cloak and pulled out from inside a pocket a small wooden chest. She tapped it with her wand and it popped open to reveal a collection of small vials containing silvery liquid that Harry recognised at once. She pulled one out of the collection. It was labelled James Potter. 

“Harry?” Molly asked.

“Are you ready to understand your past? Are you ready to relieve all those painful memories? 

Molly reached over, grabbed Harry's hand and with her other hand tipped the vials contents into the pensieve and they plunged themselves forwards into the past.