On Spoons and Spoonies

Chronic Illness Inclusion Project.  website

Catherine Hale

Spoonie is a term used by some disabled people to connect with each other on social media. There are over 150 different Spoonie Facebook groups and nearly as many Facebook Pages and #spoonie is used almost 900 times a day on Twitter. But unless you are a spoonie yourself you wouldn’t have a clue what it all means.

 

After all, when people ask me what it’s like to live with Myalgic Encephalomyelitis I don’t normally mention cutlery! Instead I use the image of a mobile phone battery. My body’s “battery” never charges above 20%, and it “dies” very quickly, meaning I have to spend long, inactive periods “recharging” just to get through the day.

 

So where do the spoons come in? Well, one day in 2003 a woman called Christine Miserandino was sitting in a café and grabbed a bunch of spoons beside her to tell her friend a story about what it’s like to live with lupus. She explained that each spoon was like a unit of energy. You only have a handful each day and you have to spend them wisely otherwise you go into energy debt. And her blog went viral. It became shorthand for the experience of so many people with a range of chronic illnesses that restrict our lives through exhaustion and pain. Before “spoon theory” existed, our language and our medical textbooks didn’t have a term that describes our shared reality.

 

That’s how the “Spoonie” community on the internet was born.

 

Peer support is huge in the spoonie community. You could say that we are one big User Led Organisation of disabled people around the world connecting with each other from our beds and living rooms. We give each other strength when family members don’t “get it” and think we’re being lazy; when strangers say “But you don’t look sick”; and when real-life friends stop visiting and get on with their lives while we remain stuck at home and lonely.

 

The trouble is no one outside of our social media bubble knows who we are. We’re doubly invisible. We mostly can’t go out into the world to tell people about our lives. And when we do go out into the world our impairment is generally hidden. In fact, we often go to great lengths to look and behave “normal” and hide our symptoms. Because lying on the floor in pain or exhaustion in public spaces is just not done.

 

We are like a ULO with no leader, no constitution and no PR strategy. So those who design policies and services for disabled people don’t know we’re here either. We don’t fit into any of their preconceived groups of impairment: blind, deaf, wheelchair user, for example. They expect us to “prove” that we’re disabled in order to get support but when we don’t confirm to their notions of disability they say we’re faking it.

 

Our DRILL project is for and about spoonies, and it aims to change that. We want to channel all that great peer support and wisdom into a voice that can reach out and tell the world that we exist and that we want to be included.

 

We may not be physically present in society because of illness but we want to be in your thoughts, and in your designs for a better society. We want to contribute our knowledge and be included in your understanding of what it is to be human. We want to be represented and we want our lives to matter.

 

Notes: Our research project is called Chronic Illness and Citizenship: mobilising a collective voice for change. It is managed by the Centre for Welfare Reform and it is part of the DRILL (Disability Research on Independent Living and Learning) programme, a five year scheme led by disabled people and funded by Big Lottery Fund. It will launch later this year.

This research project, which has been supported by the lottery funded DRILL project :

Chronic Illness & Citizenship

Read the history of Spoon Theory on the But You Don’t Look Sick website