We recently turned a fresh leaf into a new year. New Years often bring with them a flurry of activities. From tying up the loose errands trailing from the year gone, to drawing up new plans for the year ahead, it can be a hectic time of closing old projects, planning and goal setting.
A lot of us are familiar with new year resolutions and vision boards, but have you ever sat down and made an “energy budget” before you can even start to plan the new year?
New year resolutions can look very different for those living with disabilities, chronic conditions or neurodivergence. They have to break down their years into months, into weeks, into days with deliberate pauses. They must recalibrate every twenty-four hours to check whether their energy reserves are depleted and need to be repaired. In case of unforeseen circumstances, like an unexpected visit from a relative, or a sleepless night, or an overcast morning they have to prioritize and re-prioritize given the ‘spoons’ they have left.
What Is Spoon Theory?
As the disability rights movement grows globally, the spotlight is being brought to the diversity of lived realities within the disability community. However, one common thread throughout the spectrum of disability is having limited energy and how uniquely disabled persons manage their limited energy resources.
The concept of “spoon theory” has become an increasingly helpful metaphor to explain limited energy resources. Over the years, the spoon theory has been further adapted to explain the experiences of neurodivergent persons. In this article, we will break down the concept of spoon theory and how it enables the disabled community to voice their experiences.
The origin of “spoon theory” can be traced back to disability advocate, Christine Miserandino. When a close friend asked Miserandino “what it felt like to have Lupus and be sick”, she attempted to explain the complex navigation that was her life while living with a chronic illness.
Since they were at a diner, she grabbed a lot of spoons from the table and gave them to her friend, and said each spoon represents a unit of energy. She explained how for each task she needed to do in the day—from getting dressed, to cooking, to working on a project—she would need to expend a spoon or more. She illustrated with taking away each spoon for every task that using up spoons without thought could lead to burnout.
In her essay on the “spoon theory” Miserandino elaborated that since the spoons were finite, she must carefully measure how many spoons are needed for each task she is required to do in the day, and delegate them carefully. Miserandino further explained that if the spoons were to be expended before she finished all her tasks for the day, she would have to “borrow spoons” from the next day which meant she would be left with lesser spoons the next day. She observed how variables like her personal health, the weather, and even interpersonal dynamics could affect her ‘spoon reserve’ at any given time.
The Barriers Of Living With Invisible Illnesses
The concept of “dynamic disabilities” is essential to understand the nature of invisible disabilities of illnesses. Unlike a static disability whose attributes remain same and therefore predictable, for example a physical disability; dynamic disabilities are known for their fluctuating symptoms or traits. A lot of autoimmune diseases, chronic conditions and neurodivergence comes under the umbrella of ‘dynamic disability’.
It implies that there may be periods of ease followed with periods of difficulty for those living with dynamic disabilities. For instance, someone with chronic back pain can have weeks of respite, followed by an intense return of the pain. The inconsistency of the symptoms means the person will have to navigate each day differently depending upon the presence or absence of the pain.
The spoon theory has since become a helpful resource for people living with invisible disabilities and chronic illnesses. The metaphor of the “limited spoons” resonates with the unpredictability of living with dynamic disabilities. In a world that is fixated on optimizing productivity and being constantly on the run, it can often be challenging for the ‘invisible disability’ community to bring light to their lived experiences and the unique barriers they face in moving through daily life.
Often people living with invisible illnesses like autoimmune diseases (like diabetes, Crohn’s Disease, etc.), chronic fatigue or depression are overlooked when it comes to disability justice. Since navigating one’s spoons is not a ‘visible’ experience, their struggles and lived experiences are often failed to be acknowledged and accommodated in social, legal and medical settings.
Invisible Disabilities And Internalized Ableism
Living with a disability can often trigger internalized ableism—ableism refers to a bias and discrimination against disabled bodies—as well. Since a lot of ableist beliefs are directed towards disabled persons, they can often internalize these biases. These biases can lead them to equate worthiness and competence with a non-disabled body. On failing to match up to the standards of efficiency dictated by non-disabled bodies, a lot of disabled persons believe they are somehow “broken” or “incompetent”.
When a disability is invisible, there can be an added layer of self-doubt or impostor syndrome. People can question the ‘drive’ or ‘ambition’ of a person with ADHD or fibromyalgia—both of which fall under the spectrum of invisible disabilities—if they are slow in finishing their tasks.
They might believe they lack “will power” or “motivation” to finish their assigned tasks. The person living with invisible disabilities might resent their perceived “incompetence” and try to catch up with their non-disabled peers. In the process they might up end up masking—that is pretending to be a neurotypical and non-disabled person as a survival mechanism—which can eventually cost them a lot of spoons.
The Spoon Theory—a useful resource
This is where the simple but tangible metaphor of spoons becomes an accessible and empowering ‘thought experiment’ that helps this community drive home their daily struggles to non-disabled allies. The spoon theory encapsulates the reality of chronic conditions that come with fluctuating symptoms, or neurodivergence and its varying traits and how its impact can be felt across not only their physical health but a person’s psychological wellbeing, interpersonal relationships and work.
For many who have struggled to arrange their lives around invisible disabilities (including neurodivergence) the spoon theory is a resource in recognizing their own lived experiences. It becomes an indispensable framework in learning about their energy patterns, conserving it and allowing them to pace their selves.
The spoon theory allows disabled individuals not only to manage their tasks but also verbalize their needs to their community, including their caregivers, peers and / or colleagues, when they are running low on energy. It can help them understand what their body needs and slow down, set up boundaries in interpersonal and work dynamics according to the availability of their spoons.
The Neurodivergent Spoon Drawer
While ‘spoons’ have become a popular way of referring to energy reserves, their meaning changes in the presence of neurodivergence. Neurodivergent advocate, Cynthia Kim, built upon the ‘spoon theory’.
She pointed out that the ‘kinds’ of energy available to a neurodivergent person are wider. It is not simply about physical energy. She explained that her ‘spoon drawer’ holds physical activity, social, language, sensory and executive function spoons. Over the years, the neurodivergent community has adopted Kim’s theory and added more kinds of spoons like ‘focus’, ‘communication’, ‘organizational’ and ‘cognitive’ spoons to the list.
The neurodivergent spoon drawer is also variable as in the spoons in each compartment can change. For instance, on a well-rested a person might have more social spoons, but maybe on a day after attending a social event, the person might have zero social spoons but more physical activity and focus spoons.
The Layer Of Intersections On Spoons
Just as neurodivergence changes the experience of ‘spoons’, similarly the added layer of intersections in identities can add to challenges. The experiences of a person living with an invisible disability becomes more marginalized and lesser understood, if they belong to a gender, sexual, caste, religious or ethnic minority.
For instance, an unemployed transwoman with an invisible disability, hailing from a rural area, who is also a caregiver to their aging parent, will face comparatively more obstacles. There might be no awareness of spoons, or the means to conserve them can be limited or non-existent.
Therefore, the added layers of their gender, their geographical and socioeconomic location further complicates their experience of disability. Comparatively an employed cisgender woman, situated in an urban area living with a well-aware and financially mobile community can better access awareness and spaces of support.
Why Is Knowledge Of Spoon Theory Relevant?
While the spoon theory is gaining credibility and slowly seeping into the language of the disability community, the path ahead is uphill. Often persons living with invisible disabilities pay the hidden cost of burnout when they do not recognize the importance and labour of strategizing around dynamic disabilities or hold internalized ableist biases.
Or they suffer at the hands of an inaccessible community—including family, partners, peers, supervisors and work colleagues—who do not have the tools to recognize their daily dance of strategizing and prioritizing around their dynamic disability. Recognition of the spoon theory helps with strategizing; to take breaks, delay or refuse a task when needed or asking for help are all ways to conserve spoons or repair when all spoons are exhausted.
When friends in a casual meet-up, or colleagues in a work setting refers to ‘spoons’, it can be a deeply affirming experience. It can lead to psychological safety and increased wellbeing and when persons living with invisible disabilities can speak about their experiences and ask for accommodations.
The framework of “spoon theory” is ultimately crucial as it affirms the struggles of disabled persons and explains the burnout that can be caused in the absence of a pacing system. It brings the spotlight on the lack of inclusive spaces that can support disabled persons, which is why they have to rely on strategies like the “spoon theory” to navigate a world that is not designed for bodies and minds like theirs.
Awareness of the spoon theory not only educates those with invisible disabilities but those that form a system of support around them. And you can be never too late to begin your own journey with managing spoons. Simply start with the questions,
Written By Usri Basistha
