Running head: SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

Social Construction of Disability and The Spoon Theory:

Forced Identity Contrasted with Community Symbol Development
Maria L Pruefer
DePaul University

Abstract
This paper offers background on the social construction of imposed identity for people with
disabilities and juxtaposes it with a textual analysis of the social construction of invisible and
chronic illness identity from within the community. Symbols and identity for the disabled or
handicapped community have been forced upon them from outside of their community by
society at large, creating tension. This paper will argue through a textual analysis of a Facebook
support group (POTS Support Group) that an identifying symbol created from within the
community has a wider acceptance within the community and better understanding from outside
the community it describes.
Keywords: disability, identity, chronic illness, Spoon Theory, symbolism, dysautonomia

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

Disability has been socially constructed in such a way that we immediately associate it
with a blue and white wheelchair symbol seen in every parking lot across America. This paper
seeks to critically analyze the development of language and identity for non-able bodied people
forced upon them by the dominant able-bodied culture. This will be juxtaposed with my textual
analysis of The Spoon Theory and the symbolism of the spoon created from within the chronic
illness community as an identifying and unifying symbol of identity and support. First, I will
present you with scholarly information about the problematic development of the
handicapped/disabled identity by the dominant culture of able-bodied people. Second, I will
present background on The Spoon Theory in order to help you understand my textual analysis.
Third, I will walk you through the methods, findings, and conclusion of my textual analysis.
Finally, I will wrap everything together and leave you with my call to action.
Literature Review Oppression of People Living with Disabilities
Laws created about disability without input from the disabled community have been the
status quo for a long time. Ugly Laws were common practice around the United States through
the 1800s and into the 1900s; with a few states still having these laws at late as the early 2000s
(Siebers, 2003). Ugly laws grouped everyone that was deemed unfit or too hideous for society
into one category and made it illegal for them to be seen in public. At this point in time, the term
disability did not exist and people we now consider to have a disability were deemed unfit for
society, forcing them into the shadows and out of public consciousness (Coco, 2010). It was not
until 1973 when Section 504 of the Rehabilitation Act passed that people with disabilities
[were seen] in public places doing ordinary things (Harris, 1985, p. 9). Before the

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

legislation of Public Law 95-142 (the Education for All Handicapped Children Act of 1975),
most children with disabilities were hidden way in special schools or, at least, in special
classrooms (Harris, 1985, p. 9). In 1990, the Americans with Disabilities Act passed but
defined disability as (A) a physical or mental impairment that substantially limits one or more
of the major life activities; (B) a record of such impairment; or (C) being regarded as having
such an impairment. Thus keeping the status quo of society determining what is deemed normal
and what disability is and forcing that decision onto the individual (Iezzoni et al., 2000, p. 1052).
Decisions have been and are continuing to be made for the disabled community by
society at large even beyond laws and statutes. Able-ism continues to dominate public spaces
through lack of access for those who cannot climb stairs or doorways that are not wide enough
for wheelchairs (Siebers, 2003). Able-ism is perpetuated through word choice; disability related
terminology is commonly used intentionally to insult relatively able people without any regard
for the negative impact on people with disabilities and their fight for change (Harris, 1985, p. 8).
The everyday language used to describe those living with disabilities is dictatorial; those forced
to live with the label of disabled or handicapped did not have a hand in creating these terms
(Harris, 1985). Proxies for those with disabilities often follow societal pressures to keep the
status quo and do not stand up against discrimination when they are supposed to be the voice for
someone who cannot speak for themselves (Iezzoni et al., 2000, p. 1052). Society has
conditioned us to believe that disabled people are defected, deformed, or developmental in
some way and need accommodations. (Morse, 2003, p. 155). Science has trained us to think we
can eliminate disability and chronic illness. Through the eugenics movement, we can eliminate
genes that society deems problematic (Lunsford, 2005; Burch, 2005) and through new medical
research we can eliminate chronic illness rather than invest in proper care for those suffering
currently (Jung, 2015). The final societal power, and perhaps the largest influence, is the power

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

media has over the public image of disability because it often misrepresents the experiences of
people with disabilities (Burch, 2005; Siebers, 2003; Kuppers, 2007).
Literature about the experiences of people with disabilities finally came to light in the
1980s (Lindblom & Dunn, 2011). This created a new field of study that began to recognize the
different ways people with disabilities had been cast aside, pitied, and/or had major life decisions
forced upon them (Fries, 1997). The academic conversation moves from awareness to a need for
appreciation and understanding the adaptations and experiences of those society labels disabled
in order to understand the body as a whole (Davis, 1999). In the early 2000s, the conversation
changed to identity development from within the disabled community; allowing them to decide
their own labels rather than have society impose their own (Iezzoni et al., 2000; Burch, 2005;
Lunsford, 2005; Kuppers, 2007). This also opened up a call to action that aims to deconstruct the
language built around disability and to create awareness beyond those living with disabilities
(Lunsford, 2005; Burch, 2005; Siebers, 2003; Jung, 2007).
Background - The Spoon Theory
The Spoon Theory is a personal story by Christine Miserandino that was copyrighted in
2003 and can easily be found on her website www.butyoudontlooksick.com or on YouTube
where she reads her story at a conference. Christines story talks about going out to a diner with
her best friend. Her friend asked her what it felt like to have Lupus and be sick even though
she had been with Christine on her bad days and been to several of her doctors appointments.
Christine rambled on about pills, and aches and pains but her friend wanted to know what
it felt like, not physically, but what it felt like to be [Christine], to be sick. Christine was caught
off guard but she thought to herself If I cant explain this to my best friend, how could I explain
my world to anyone else? After looking around the table, Christine quickly grabbed every
spoon on the table and she looked at her [friend] in the eyes and said Here you go, you have

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

Lupus. Her friend is confused and Christine explained to her that the difference in being
sick and being healthy is having to make choices or to consciously think about things when the
rest of the world doesnt have to. The healthy have the luxury of a life without choices, a gift
most people take for granted. Christine says I asked her to count her spoons. [Her best friend]
asked why, and I explained that when you are healthy you expect to have a never-ending supply
of spoons. But when you have to now plan your day, you need to know exactly how many
spoons you are starting with. It doesnt guarantee that you might not lose some along the way,
but at least it helps to know where you are starting...She counted out 12 spoons. The spoons add
up to the limited amount of energy someone with a chronic illness has for the day. Christine
walked her friend through a typical day and took away spoons for things that expend energy. For
example: Showering cost her a spoon, just for washing her hair and shaving her legsGetting
dressed was worth another spoon. Christine goes on to say I think she was starting to
understand when she theoretically didnt even get to work, and she was left with 6 spoons. [She]
then explained to her that she needed to choose the rest of her day wisely, since when your
spoons are gone, they are gone. Sometimes you can borrow against tomorrows spoons, but
just think how hard tomorrow will be with less spoons. At the end of this hypothetical day, her
friend comes up short on spoons and had tears in her eyes and asked quietly Christine, How
do you do it? Do you really do this every day? [Christine] explained that some days were worse
than others; some days I have more spoons than most. But I can never forget about it, I always
have to think about it.
This one story has spread like wildfire through the chronic illness community. It has
practically become part of the initiating ritual of being accepted into chronic illness support
groups. In February 2014, I was 25 years old and had been bodybuilding for over a year. I went

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

from weightlifting three to five days a week and being in the best physical shape of my life to
being bedridden with constant nausea and nearly passing out when I would stand up. In the
spring of 2014, I was seen in the emergency room, then a few days later by my primary care
doctor, then an ear nose and throat specialist, and finally a cardiologist for a tilt table test where I
was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of
Dysautonomia. This is a chronic illness that does not have a cure. I updated my family and
friends who were following my medical journey on Facebook. Within a few hours, my friend
Heather messaged me Welcome to the Spoonie Club and I was introduced to the community.
Textual Analysis Methods:
Below I have attempted a textual analysis of the social construction of The Spoon Theory
in an online support group. I examined a single Facebook group entitled POTS Support Group
because it contained 10,972 members. This group had the most spoon references out of the
groups I have access to as a member on Facebook. The other chronic illness support groups only
had 500-700 members and I would have had to expand my search parameters beyond the three
months I chose in order to obtain even close to what I found in the POTS Support Group. I
narrowed my search to December 1st, 2014 through February 28th, 2015 due to how recent the
postings are and the time constraints of this course. Images were included when spoons were
present or referenced The Spoon Theory. I only used main posts rather than searching through all
threads that referenced spoons pertaining to Spoon Theory due to the constraints of the search
function on Facebook and time constraints of searching thousands of postings by hand. All of the
spoon references were copied into an Excel document and grouped together in categories from
themes that emerged during data collection.

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

I eliminated the following from my findings: actual spoon use (i.e. referencing needing a
spoonful of medication), references to links that were no longer available and had no clear
reference to spoon theory, and reposts of the same artwork images (i.e. image of a motorcycle
made out of spoons was repeated four times, I only used it once in my data collection).
Results - Themes Found in Text:
While collecting data from the POTS Support Group, nine distinct themes became
apparent. These themes included spoons referencing: spoon use awareness, spoon support, spoon
overuse, people new to spoon theory, families and friends understanding spoon theory, images of
support, images lightening the mood about spoons, images of friends and family understanding
spoon theory, and images of spoon jewelry.
The first theme to emerge was Spoon Use Awareness. This category had a total of 26
posts and included POTS patients concern with how much energy they were expending
throughout the day. Posts people made in this category used the Spoon Theory to reference
whether they had used too many spoons for the day or if they felt like they had extra spoons.
Examples included: Anyone else find water bottles everywhere when they have enough spoons
to clean?; Snack of champions! Hoping it helps my BP and ultimately my heart rate! Been 3
spoons short all weekend and it's catching up to me!; Sorry, but I can't remember the last time
this has happened but I just want to scream in joy... I HAVE SPOONS LEFT! Happy, happy
woman here!
The second theme was Spoon Support with a total 5 posts and included POTS patients
attempting to show support for one another by referencing the Spoon Theory. Examples
included: May the spoons be ever in your favor. Goodnight guys! Still on my crazy flare up!;
Sending you all extra spoons and love today from the resort I'm staying at since it's my 23rd

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

birthday!! Thank you all for being such a wonderful support system. I'm so grateful for each and
every one of you. Xoxo.; Good morning potsies! I just wanted to say Thank you so much to all
the ones who checked out my pots page! We need all the awareness we can get! Sending hugs
and spoons your way https://m.facebook.com/POTSPage"
The third theme to emerge was Spoon Overuse with 28 posts. Spoon Overuse included all
posts about running out of energy. This differed from Spoon Use Awareness because posts in
this category had a specific event rather than general sentiment about energy level and also
involved the writers frustration about running out of energy. Examples included: Oops.
Misjudged my spoons and went to the mall alone. Lying here in JC Penney with my feet up in
the air, waiting to feel better. Where have you gotten stuck?; It's only 12 and I'm out of spoons:
(I swept my kitchen, fed my son and did two dishes and bam passed out. :( at least my floor was
clean lol; I'm out of spoons and my heart isn't letting me stand. Have to get the kids from the
bus stop - this is going to be an adventure - I've already collapsed once frown emoticon
The fourth and most obvious theme was People New to Spoon Theory with 10 posts.
These postings included people asking questions about what Spoon Theory was because they
were newly diagnosed and new to the community. Examples included: Okay I'm new what's
with the spoons I think I'm missing something?; Okay, sorry to sound like the idiot, but I've
seen "spoons" and "spoonies" a lot... what's that mean?
The fifth theme was Families and Friends Understanding Spoon Theory with 6 postings.
This theme included friends and families of POTS group members either understanding or
failing to comprehend Spoon Theory. Examples included: Here is something to make you
smile :) I finally got my wonderful hubby to read the spoon theory.. When he was done he said it
was a great way to explain things. I told him sorry I didn't have many spoons today, his response

SOCIAL CONSTRUCTION OF DISABILITY AND THE SPOON THEORY

was, "you don't need any spoons when you have a spork." :) he's my spork; I tried the spoon
theory game with my mom and brother yesterday...they didn't seem to get it. My brother's answer
was to skip everything. I tried to explain you can't skip a shower, going to work, making dinner
every day, etc but he still just kept making it a big joke. I'm disappointed but I can't say I'm
surprised.
The remaining four themes involved images. Due to time constraints and the limitations
of the search function on Facebook, the only way I could find images of spoons was when the
author had used the word spoon in the caption of the image.
Images of Support had two postings. These images were sending support to the POTS
community at large. The captions included: Sending everyone more spoons to get through the
day and Sending everyone Christmasy type spoons!!!!
Images Joking about Spoon Theory had seven postings. These images indicated the ingroup language/understanding of Spoon Theory while poking fun at having a chronic illness that
requires them to count the number of spoons they have every day. These captions included: in
reference to a motorcycle statue A chopper made of SPOONS!!! its by James Rice; referring to
a Christmas tree made of spoons My spoon tree. I hope it doesn't come out blurry. And our
final author for this category was talking about lamps that were made out of many different
spoons welded together Here is where our Spoons went! Spoon lamps.
Images of Friends and Family Understanding Spoon Theory had 5 postings. In this theme
posts were of actual images of spoons friends and family had given them in reference to the
Spoon Theory. Examples included: My spoon bouquet from my husband; The spoons my
daughter made me; and My grandma gave me spoons that she's had for a while after she read
the spoon theory. So sweet.

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Images of Spoon Jewelry had 3 postings. Posts in this category involved pictures of
spoon jewelry. Examples included: Hanging with my love rocking the spoon necklace that I got
for Valentine's Day! and Guys look at my new necklace!!!! :) all these extra Spoons!!
Conclusions:
As Peter Conrad and Kristin Barker (2010) bring to light:
Although often unnoticed or taken for granted, certain illnesses have particular social or
cultural meanings attributed to them. These meanings adhere to the illness and may have
independent consequences on patients and health care. Cultural analysts point out that
illnesses also may have metaphorical connotations (p. S69).
There is a negative connotation associated with chronic illness from the public perspective that
can have a negative impact on the daily lives of those with chronic illness but the chronic illness
community has found a way to support each other in an attempt to reverse this negative
connotation by spreading awareness through utilizing a simple spoon. I argue that The Spoon
Theory creates its own set of social and cultural meanings of chronic illness from within the
community in order to get those outside of it to understand their experience in an attempt to
negate the common conceptualization of what it means to be chronically ill. Elissa Foster and
Arthur Bochner (2008) echo this point when they point out the the significance of
communication as the process by which the subjective realities of individuals are externalized,
most often through language, and come to be shared intersubjectively between and among
people (p. 88). I argue that the chronic illness community is attempting to accomplish the feat of
externalizing their experience by symbolizing the spoon in a way that makes their illness
understood by those that cannot physically experience it as well as sharing this symbol with

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11

others as a form of support and understanding. The spoon creates a shared meaning and
understanding of chronic illness that everyone has the ability to grasp.
My textual findings suggest that there is a strong tie between the symbolism of the spoon
created by The Spoon Theory and patients with the chronic illness POTS because it was created
from within the community of chronic illness patients. I would need to do further research to
make a more generalized statement, but do the time constraints of this paper I am unable to.
Since the symbol was created within the community, these patients feel a strong connection
because the concept of The Spoon Theory helps them to convey to others what they experience
every day in a way that can be grasped by those without chronic illness. Symbols are meant to do
just that, represent something in a way that is easily understood and accurately represents what it
is attempting to symbolize.
Call to Action:
From my research and personal ties to this topic, it is evident that a new symbol or set of
symbols needs to be created for those with disabilities and chronic illness. In my research, the
authors argued that the handicapped symbol and terms disabled and handicapped are outdated
and we need to deconstruct these socially constructed terms and work with this differently-abled
community to come up with a new identity and terminology (Lunsford, 2005; Burch, 2005;
Siebers, 2003; Jung, 2007). These symbols need to be crafted from within the disability
community in order to reflect the identity of those it represents. The Spoon Theory is a great
starting place to help raise awareness in the dominant culture of able-bodied people but we need
to take it a step further. We need to replace the language of disability as well as the white and
blue handicapped symbol that most of the community does not identify with, with something that
more accurately reflects the community it is designed to represent.

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I leave you with this quote from Scott Lunsford (2005)

Deconstructing questions must always be asked, for if we become
satisfied with our answers, we run the risk of slipping back in our
own comfortable silence. (p. 333)

12

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