If you’re part of the online disability community, the chances are you’ll have discovered people who describe themselves as ‘spoonies’. But do you know what this means, and the history of where this phrase comes from?
What is the spoon theory?
It all began with a personal essay written by Christine Miserandino in 2003, about her experiences of living with a chronic illness called lupus. In this essay, based on an occasion when she was dining in a café with her best friend, she uses spoons from the table in front of her to try and describe to her friend what living with fatigue and severely limited energy feels like.
She explains how everybody begins their day with a certain number of ‘spoons’, and how when a person is non-disabled, they expect to have a never-ending supply at their disposal. Usually, they can do all the things they want or need to do. Each of their daily chores or activities would cost them a spoon, leaving fewer for the rest of the day. By nighttime, their supply may be running low, but they would wake up the next morning with a replenished amount of spoons, ready to begin again.
For people with chronic illness or long-term health conditions, however, things are different. The author explains how even the smallest parts of their day, even something as seemingly simple as reaching to grab an item from a high shelf in the kitchen, can require precious spoons to accomplish. Therefore, every moment of the day has to be meticulously planned and paced in order to get through. If a person runs out of spoons during the day, they can ‘borrow’ from tomorrow’s supply, but this can lead to them feeling even worse the next morning. And because of fluctuating symptoms, you can never know how many spoons you’ll be working with on a given day. Even if a person does everything right and manages their condition to the best of their ability, they often have very little control over how much useable energy is at their disposal.
This approach has deeply resonated with the chronic illness community for decades, and has become a widely cited example that people use to try and explain their lived experiences to others. It also led to people describing themselves as ‘spoonies’, as a way of demonstrating that they relate to the ideas shared… and in turn, connect with others and form a powerful online community that remains to this day. Over recent years there has been some movement away from the term ‘spoonie’ as a descriptor, especially by younger generations of disabled people, but the Spoon theory remains a culturally significant idea that has played a huge role in chronic illness advocacy.
How does the spoon theory relate to non-visible disabilities?
Christine Miserandino’s theory puts words to the deeply difficult experience of living with fatigue and severely limited energy. She needed to explain her reality in this way because, for many people, their diagnosis and symptoms are not immediately visible to others.
People with all kinds of long-term health conditions relate to the Spoon Theory – chronic illnesses, autoimmune diseases, neurological conditions, musculoskeletal diagnoses, and so many more. Most commonly, people with these conditions share the experience of unrelenting fatigue and limited energy, and chronic pain. And the fact of the matter is that many people who fall into these categories self-identify as having non-visible disabilities. It can often be difficult for others to detect and understand their challenges on sight alone. And it's not just their physical symptoms that are not apparent – for many, the demands of managing their condition and navigating access barriers in the wider world are often invisible too.
How can the Sunflower help?
There’s an important intersection between The Spoon Theory and the Sunflower. Many spoonies with non-visible conditions face stigma and stereotyping as they go about their lives, especially when they try to access support or help. To this day, people are denied priority seats on public transport, refused reasonable adjustments in education and employment, or ridiculed for using a Blue Badge parking space that they are legally permitted to use.
Sometimes, aggressors try to justify their actions by saying that they didn’t know the person they were dealing with had a non-visible disability. However, individuals shouldn’t have to constantly disclose and share sensitive information about their condition or diagnoses to access the support they need – and more than that, even the act of disclosure can be physically and mentally exhausting, and a surefire way to drain a person’s spoon count.
That’s where the Sunflower comes in. Although people’s access needs should be accepted and honoured without challenge regardless of whether they choose to use the Sunflower or not, many people find that wearing a Sunflower provides an easy visual cue to others that they may require additional support in the situation they are in. This removes the need for lengthy conversations or unwanted disclosure and can help people access the support they need in a much more timely and fatigue-friendly way.
And now, the opportunities to utilise the Sunflower and what it represents go far beyond the lanyard alone. Some people may feel more comfortable or empowered by wristband or pin badge, or using a tag for their bags when they’re on the move. There are even stickers that are designed for cars.
Education around the Sunflower must continue to evolve. Awareness of the Sunflower has hugely increased in recent years, but there is always more we can all do. The more businesses, organisations, and venues that become informed about The Sunflower and what it signifies, the more welcoming and accommodating they will become for people with non-visible disabilities—in particular those who relate to The Spoon Theory.
