A Reminder of a Year Well Spent

I haven’t posted for a while and it’s due to many factors, the biggest of them is the changing state of my spine. I could focus on that, the idea that I might not return to work, not being with some of my family at Christmas or not being able to travel as freely as I once did. Much of social media at this time is spent thinking about all the awful things that are happening, especially for those of us who are witnessing “mans’ inhumanity to man”. (Thank you Rabbie Burns.)

 

Whilst travelling through Facebook, someone shared the jar concept of blessings. In a nutshell, or jar, every time something good happens to you, write it on a small piece of paper. Fold the paper and put it in a large jar, with a lid. Keep doing this until the end of the year. Only when you get to 31st of December, can you open the jar and read all the good this year has brought.

 

I’m not usually saccharine sweet when I get to this time of the year. I have become a bit grumpy. I believe this started after the first blushes of being a county councillor wore off. Back in 2013 when I was able to travel in a power chair without pain. When the Councillor Services team made the chamber and the councillors area more accessible. It was a great start, until I was patronised and made fun of, in a sexist, ablest way by my supposed peers. I was relegated to the bottom of the pile of our group. It came to a point that even the stuff I was an expert at was pushed aside.

 

Then after a nasty episode of bullying near me, I began to realise that everything I thought the Labour Party stood for, wasn’t truly at the heart of it, until Jeremy Corbyn came along. What I didn’t realise was that our own party would fight against him, because he wasn’t exactly the model of leader that everyone wanted. You have probably gotten to the point that you are thinking to yourself, where is the jar, the explanation of the jar theory. Wait a while, grasshopper. (This is reference to a TV show, Kung Fu.) I’m getting there.

 

A little more than a year ago, I had to make an unpopular move to take a stand against bullying. I was afraid, because now I had been torn apart by becoming disabled as my body started to break down. The government was also tightening the screws against every disabled person who dared to live their life. When we got mouthy, the screws turned deeper. When we dared to protest, we were arrested and and the police made sure that we were sanctioned. Vilified in the media, frightened to go to the shops and be like everyone else only to be recorded in a food store, to be caught out, because the government spies on us going out of our houses.

 

So I was afraid, but deep inside, I still was an old school Trade Unionist and knew the difference between right and wrong. And bullying is definitely wrong. So I stood against it and received no help from the Labour Party, not locally, not regionally, and I am not sure it went nationally but I am sure we wouldn’t have gotten help there either.

 

Things didn’t go the way I thought it would. I was upset, I was isolated. I gave up for a while but I refused to give up completely. And then my Labour Group made me the shadow cabinet member for disabled people. The first one in any council near by. I didn’t crow about it, it made it a little better, I gained some self worth back.

 

Almost there, grasshopper, (see above reference) just a little longer.

 

Last December I joined Project 125, which was a great idea, and still is. Then I began to find other ‘disabled people’ (who followed the social model of disability) (one blessing folded and put in the jar) and the virtual friendships started to blossom (another blessing folded) and a common idea started to smoulder into action (another blessing folded and put in the jar.)

 

Those friendships started to grow. We started to help each other, started to support each other in tangible ways(another folded paper) and in very real terms. It far outweighed anything the ableist world could throw at us. We stuck by each other. Worked out differences (as best we could because everything we are taught about being good friends was created in the same space, face to face. (we used technology to overcome disabilities and distance) (another fold) We started to get together virtually more frequently, against a common foe who didn’t do what we needed. (I think you are getting the idea, another fold) We mounted a campaign and kept meeting and focused on one task, to make the Labour Party let us in. (Another fold)

 

On a whim, we offered to help try and reach the right people, we were building confidence and a don’t ask, don’t get mentality (another fold). We sat with people who really wanted help in getting things better and we decided to trust just a little more (another folded blessing) and we pulled off something no one who knew us would ever have believed we could. This is a two fold deal for reasons those of us who were there knew. All of our skills, pulling together made it better for people who noticed the difference. 


And then winning back our organisation, Disability Labour, so that we give back to other disabled members who have been let down about being let in to our party, our only hope came before our greatest victory, we made the party conference better, because we worked together as a team. ( another fold, and another) we gained momentum but we had so much organisational stuff to do, to work on our first tentative links into a system that is designed to be against us. But because our victories were hard won, the damage that society has done to us has come at a price. We have won a battle but the war is far from won, grasshopper.

 

As much as we would all have liked to have the dog eat dog world of ableism stopped dead in its tracks, it will not be fixed in a day. Our party is still not a safe place and just because we have to be cautious and protective of this burning flame, we must realise that the people that we were before we were official, we still are. We are not hiding the flame for a few of us. We are trying to protect this new thing from the same bullies that are baying for our Leader’s blood. We know that his vision is not accepted by those who have learned to play a cut throat game of hurray for me and screw you.

 

Just as we trusted our membership to see our truth, do not turn the mistrust into ourselves. Have patience, I know how bad it is and I am really frightened too. I have to step away so that I am able to rest. I am not as strong as I was. I see how people are being treated, worse than animals, we are being hunted by the government, I fear I will not be able to sustain the fight, I draw on your strength to keep moving forward. I know that things are changing, but not quickly enough, we have to help get the party back to what it is meant to be about. But we have to place our trust in each other, I will try to keep folding those blessings or rather victories and I will continue to try and walk forward and try to keep focused. Because we have to win the fight of our lives and those who can’t fight are depending on us. All of us and I look forward to all of the victories we can put in the jar.

 

Kathy Bole Co-Vice Chair

First published 31 Dec 2018

Words Matter – Spoonie or Energy Impaired

Last year I got an invitation to participate in the Chronic Illness Inclusion Project. It’s run by a Disability Labour member, Catherine Hale who I’ve now got to know well. 

 

The research project is exploring the validity of the concept of Energy Limiting Chronic Illness as an impairment group and as part of the Disabled People’s Movement.

 

‘Spoonie’ as a concept first came about in 2003 via a blog post by Christine Miserandino

 

More recently an article in The Mighty used the analogy of a mobile phone battery to describe Energy Impairment 

 

The choice of a spoon as part of our DL logo was deliberately chosen as an image and illustration of our everyday lives.

 

We use spoons / spoonie amongst ourselves to describe not having enough energy to do the tasks that everyone else takes for granted. Whilst this makes sense to us and it’s easy to explain to others, it’s not one that is easily recognised by medical professionals.

 

CIIP has come up with the term energy impairment to describe the difficulty that so many of us face with not having enough spoons/energy to do what we would like to do each day.


Whilst I love using the term spoonie and and have badges with a spoon on them, I can understand why some people think that we need different terminology.

 

Could there be some sort of scale to compare our energy levels to those of someone who is not energy impaired? One of the most difficult things about being energy impaired is how to quantify our inability to do things because we are just too exhausted.

 

We’re not “just tired” as people seem to think, it’s more fundamental than that.  It is literally about saying if I have a shower and get dressed today I can’t do anything else until after lunch because I’m just too exhausted to move.

 

For me it’s much more important that I keep up to date with what’s happening in disability politics and the world in general than I waste spoons getting dressed when I don’t have to go out that day. 

 

How often have I heard another spoonie say; Now I’ve cooked my meal I’m too exhausted to eat it”?

 

We need to explain to medical and other professionals that being energy impaired has a huge impact on us everyday. Energy impairment is not just applicable to those who have ME or Chronic Fatigue Syndrome. Energy impairment is a massive part of our lives if we have chronic pain, fibromyalgia or any other long-term condition.

 

Using the term energy impairment gives us a different status. It is a direct comparison against non-disabled people who do not have to battle the difficulties we face every day.

 

If I was to compare how I am on a good day with what I used to do at work running a large Nursing Home, I probably function at about 20% of my previous life. That’s without factoring in things like travel to work and and doing household tasks. 

 

That’s easier to explain to the doctor or nurse and possibly social workers or OTs, even if the latter two don’t seem to want to accept what many of us tell them. 

 

We talk about people having a visual or hearing impairment so why not talk about being Energy Impaired?

 

I’ve started to use the term Energy Impaired in papers that I write, and in the way I talk about my own conditions. I think that by doing so it could encourage medical and other professionals to better understand the way my various diagnoses impact my life

 

I want to encourage Disability Labour members and supporters to use Energy Impairment as a descriptor. It is a simple concept to grasp and could easily be used as part of describing disabilities within documents, training and policy. 

 

If disability bloggers and activists use the term Energy Impairment too, it would be a great way of populating this description across the disability community and eventually into mainstream medical terminology.

 

I hope and believe that it can help to change the way disabled people are perceived.  


Fran Springfield Co-Chair


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