digital activism

 Activism might sound like a bit of a scary word. It really isn't. It is about making a change to something you care deeply about, either to make it better, stop it from happening or improve it in some way. There are ways to do this online and in ways that are accessible to most people, and easy to achieve in small ways. These are just a few suggestions about my own experiences and knowledge, but there are other opinions and resources about digital activism! 

Know your subject

The key thing I have found about activism is that the more interest I have in the subject the better I find the experience. This could either be through personal experience or from learning about something on the news. There is little point in trying to cover absolutely everything, if everyone focuses on the one thing they are passionate about then more things can be covered and more things can change. Not only that, there will be others out there you can probably find doing similar things to you. 

You may think you know everything about a subject, but there is always more to learn. I have signed up to google alerts on a few different topics for different reasons. I find it a useful resource to keep up to date on my favourite topics, and it is a good way to do it as its so easy and automatic:

https://support.google.com/websearch/answer/4815696?hl=en

It is really important to understand all sides and elements of a subject, even those you disagree with, so you can then know what arguments against your position you may encounter. 

Doing something!

Mainstream media

The biggest benefit of signing up for the alerts with google is that you can then start to engage with the media articles you find, either through using the comment sections below, or by writing letters to the organisation. You may think this is a pointless exercise but it can be really useful, especially if someone relevant and important reads your words. You may be able to contribute something different or unique based on your own experiences and knowledge. The important things are:

 stay polite, stick to facts or experiences (and back them up), don't share confidential information or reveal too much about yourself. 

Government

Get involved with voting and elections! You may not feel it makes a difference, but it is really important to have a voice within the democratic processes in this country! You can sign up for postal voting, and in some areas are able to vote online. 

https://www.gov.uk/register-to-vote

If you don't know much about your MP, or local council etc. then this website is amazing! 

https://www.theyworkforyou.com/

You can sign up for topic alerts, interact with your local MP and even use the write to them service! https://www.writetothem.com/ 

Writing to your MP can be a really important step in making your voice heard and making a difference. It lets them know that people who voted for them, and those who they represent care about specific issues. They can bring these up in parliament, get involved in policy and law changes and provide you with feedback on specific issues. It is their job to do this. 

Signing petitions

This is the official UK government petitions website. You can search for topics and petitions here, and make your own too. You have to register to do this, but its worth it as all petitions over a certain amount have to be acknowledged by parliament. 

https://petition.parliament.uk/

There are other petition sites such as change.org that anyone can get involved with too. https://www.change.org/

Social media and blogging

Social media and blogging can be a very challenging environment to be in. As there are less rules within these spaces it does come with a warning. However, when it comes to digital activism and making your voice heard, it comes with an enormous benefit too. Citizen journalism, as it can sometimes be called, is all about how people are now in direct control of sharing news and relevant information amongst themselves. There is no longer a need to involve a third party. Anyone can start a blog, like this one, and write information on there, the same with social media accounts. 

There are loads of different websites with lots of different ways to interact, so its possible to find the right fit for you and your needs. Being a good digital activist on social media is about being consistent in your message, staying polite, providing facts and opinions clearly and creating a space for open and honest debates, if you chose too. If you want to simply use a blog or a social media account as a way of sharing facts on the topic your passionate about then this is also a good option, keeping people informed can go a long way in making changes. 

Charity and social justice organisations

These can be a useful source of both information and support for digital activists. They may have their own campaigns and actions that you can get involved with. Grass roots activism is usually found within social media, searching for your topic as a group or tag and searching around the term can bring these organisations up. Do your own research into these groups and make sure they fit within your own personal ethos and morals, and are safe places for you to engage with. 

To end

This is just a small taste of things you can do to become a digital activist. Hopefully by taking these steps you can start to feel you are making a difference. The main thing is to keep safe and do only what you feel able to and are capable of. Small actions by lots of people can make a big difference and get noticed by the right people. The other important thing is to ensure you are safe on the internet whilst doing this, again, search for safety tips on general internet use and on specific sites. Most big sites have safety guides and provide support if you find any problems. 

I hope this is useful and can help you start your journey into digital activism! 

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.