Imani Barbarin, black disabled writer and educator, created this guide on the conversation happening around Chronic Illness and Disability Online. Art by Sarah Epperson.

TABLE OF CONTENTS

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Terms & Definitions

TermDefinition
Ableism/DisablismRefers to the institutional, structural and interpersonal discrimination disabled people face in society.
Americans with Disabilities Act (ADA)Signed in 1990 by George H.W. Bush, this document defines the rights of disabled persons within the United States.
Convention on the Rights of Persons with Disabilities (CRPD)Drafted by the United Nations in 2006, this document protects the “rights and dignity” of disabled people globally.
CripIn an effort to reclaim and reverse the negative connotations associated with the term “cripple” many disabled folk have identified themselves using this word to show disability pride.
HOHRefers to Hard of Hearing people or communities.
Identity First LanguageUsers of this language feel that disability is nothing to be ashamed of and that placing disability in a prominent space within their identity choice allows for direct acknowledgement of their difficulty in finding accessibility to society.
Independent Living Movement (ILM)Started by Ed Roberts and the Rolling Quads in 1972, this term refers to the past and continued movement to allow disabled people the autonomy to choose to live in their homes and communities rather than institutions.
Individual Model of DisabilitySimply stated, this model of disability puts the onus on the individual to deal with the diagnosis and difficulties that come with having a disability.
Invisible DisabilitiesRefers to disabilities that are not signaled by a visibly. This can include, but is not limited to chronic illnesses, mental disabilities and illnesses.
MermaidsRefers to disabled people that are ambulatory wheelchair users. Using the metaphor of the fantasy characters that use two modes of mobility.
Person First Language (PFL)Proponents of this semantic choice feel it is important to identify the personhood of a disabled person before their status as disabled. Some examples include “People with disabilities” and “people with special needs.”

Those in opposition to PFL feel that it erases or downplays the role of disability in a person’s life.
PreXUsually used in discussions about healthcare, this refers to Pre Existing Conditions.
Societal Model of DisabilityThis model holds that it is society that causes many of the obstacles that isolates disabled people from the public sphere and that it is society’s responsibility to increase access to the public.
Spoon Theory/SpoonieThis theory was penned by Christine Miserandino to explain the energy conservation those with chronic and invisible illnesses need to enact to get through their day. In online spaces, those with chronic illnesses commonly refer to themselves as “Spoonies.”
ZebrasMost commonly used to refer to those with Ehlers Danlos Syndrome but can be applied to encompass those with rare diagnoses. It is derived from the phrase “when you hear hooves, think horses not zebras.”

Historical Overview

Since the early iterations of social justice work, advocates have used the ability to form community, collaborate and signal boost one another’s work. The disability community is no different. With the internet, however, the ability to share information with a diverse audience has proven crucial to the fight for disability rights—a traditionally isolated community. While the current conversation has been dominated, and necessarily so, by talk about protecting those with pre-existing conditions in the healthcare debate, it is important to recognize the vast array of issues facing disabled people in everyday society. To understand current topics in the western context of disability, it is important to familiarize oneself with the history of disability rights.

While many point to Helen Keller or Ed Roberts as the architects of the modern disability rights movement, many historical figures hid (or were hidden by) their disability to maintain their autonomy, health, or public persona. It is equally important to note that a lack of intersectionality in the written history of the disability rights movement often erased the contribution of black and brown people.

During the same period that Beethoven developed deafness, anecdotal evidence shows us that slave owners and some enslaved mothers sold disabled black children to traveling circuses or “oddity” entertainers to recover financial loses and to save the child from being killed. Harriet Tubman freed slaves while experiencing bouts of narcolepsy and epilepsy caused by a severe beating from her slave master. During the same period that Helen Keller was making inroads as a disabled person pursuing higher education and publication, Frida Kahlo was using artistic self-portraiture to explore class and self-identity from her bed where she spent several years after an injury to her spine.

While Helen Keller increased the visibility and changed the perceptions of disabled people, many people point to the work of Ed Roberts and the Independent Living Movement in the 1960s as the beginning of the modern disability rights movement. Up until that point, disabled people were often forced to live in institutions against their will. Proponents of this practice undermined disabled people’s autonomy by repeating a narrative of a people with an inability to make the necessary personal decisions and difficulty in performing the actions of an independent person. This is where the social model of disability comes into play.

Disability Rights advocates posited that given the proper support system and accessibility in public spaces, disabled people could navigate their communities—establishing and maintaining independent lives. This work led to the Architectural Barriers Act and the Rehabilitation act which defined accessibility parameters in federal buildings and programs receiving federal funds, respectively.

Arguably one of the most prominent and visible organizations was what is now known as National ADAPT (est. 1983). Using civil disobedience practices to take on the inaccessibility of the Denver Transit system, by collaborating with the Black Panther Party on best organizational they made their demands known by using their bodies as roadblocks to buses—shutting down the transit system for days on end. This, coupled with the powerful protest of the Capitol Crawl in early 1990 led to the signing of the Americans with Disabilities Act in October of the same year. Sixteen year later, the United Nations drafted the Convention on the rights of Persons with Disabilities defining the rights of disabled people globally.

Despite the legal frameworks that protect the rights of disabled people, the lives of disabled people are still in a precarious situation. Because anyone can become disabled at any point in time, disability intersects with every single identity. Current issues like sexual assault, transgender rights, police brutality, mass incarceration, immigration, veteran care, marriage equality and the mental health crisis in native communities all affect disabled people at the intersection of multiple identities. It is important to listen to and amplify these intersected voices when participating in the disability rights conversation online. While the perspectives of those with a close relationship to someone disabled can be valued, disabled people and their lived experiences must be centered at all times. To paraphrase Sydney Peace Prize Lecturer, Arundhati Roy, it’s time to tune in to the “preferably unheard.”

Further Reading

To further understand some of the concepts and ideas that disabled people are discussing online, please consider delving into the following:

The Individual and Social Models of Disability by Mike Oliver: While briefly discussed above, this article delves into the Individual and Social Model a bit further while taking into account the medical model as well. It is a helpful read for many of the political conversations happening around disability in the current political climate. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Oliver-in-soc-dis.pdf

The American With Disabilities Act: This legislation is fundamental to disability rights in the United States and is used as a model globally, while it is imperfect, it is necessary to see how it protects disabled people. Given the many legislative attacks meant to weaken the law, The ADA remains important to all Americans. https://www.ada.gov/2010_regs.htm

Convention on the Rights of Persons with Disabilities: The United Nations ratified this treaty in 2008 outlining the human rights of disabled people around the globe. The United States signed the treaty a year later, though never formally confirmed or ratified it. https://treaties.un.org/Pages/ViewDetails.aspx?src=TREATY&mtdsg_no=IV-15&chapter=4&clang=_en

Spoon Theory: Many invisibly disabled people use the term “spoonie” to describe themselves after the article written by Christine Miserandino. Reading this theory helps explore the perspectives of the chronically ill and offers an apt metaphor for those trying to explain their illness with able bodied friends and family. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I’m Not Your Inspiration, Thank You Very Much: While the Australian Comedian behind this important work, Stella Young, has since passed, it remains on the lips of disabled people today. This poignant TedTalk on disability and the perception of being inspiration helps many advocates describe the way media portrays disabled people. https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

Drunk History, Judy Heumann Fights for Disability Rights: In one of the rare times that television casts disabled people to play disabled people, Comedy Central tackles the Disability rights movement in the United States. It is a detailed and optimistic account that doesn’t rely on inspiration to tell the story. http://www.cc.com/video-clips/2p86bg/drunk-history-judy-heumann-fights-for-people-with-disabilities

Rachel Maddow’s Medicaid Protest Coverage: In June of 2017 NationalADAPT made the news using their bodies to block Senator Mitch McConnel’s office. Maddow’s coverage details the history of the organization and accurately captures the power of disabled protest. https://www.msnbc.com/rachel-maddow/watch/gop-threat-to-medicaid-threatens-liberty-of-millions-of-americans-974159427845?v=railb&

People to Follow

Interested in supporting disabled voices, but no idea where to begin? Here is the online disability starter pack:

NamePronounsHandles/Links
Ace RatcliffThey/s/heTwitter: @MortuaryReport
Site: Stay Weird Be Kind
Alice WongThey/ThemTwitter: @SFDireWolf, @Disvisibility
Site: Disability Visibility Project
Patreon: Disability Visibility Project
Annie SegarraShe/TheyTwitter: @AnnieElainey
Youtube: Annie Elainey
Chronic SexTwitter: @ChronicSexChat
Site: Chronic Sex
Coffee SpoonieShe/theyTwitter: @coffeespoonie
Disabled LatinxOrg.Twitter: @DisabledLatinx
Site: Latinx Disablity Coalition
Dominick EvansHe/HimTwitter: @DominickEvans
Site: Dominick Evans
EmanThey/ThemTwitter: @Punnysamosa
Keah BrownShe/HerTwitter: @keah_maria
Site: Keah Brown
MaeShe/HerTwitter: @Mae_DayJ
Matthew CortlandTwitter: @mattbc
Site: Patreon.com/mattbc
Maysoon ZayidShe/HerTwitter: @MaysoonZayid
Site: Maysoon
National ADAPTOrg.Twitter: @NationalADAPT
Site: Adapt
Rebecca CokleyShe/HerTwitter: @RebeccaCokley
Site: Medium Profile
Robin Wilson-BeattieTwitter: @SexAbled
Site: Sex Abled
S.E. SmithThey/ThemTwitter: @SESmith
Site: Real S.E. Smith
Se’mana ThompsonThey/ThemTwitter: @SemanaThompson
Site: Se’mana Thompson
Tito JenkinsTwitter: @TitoTitoq85
Vilissa ThompsonShe/herTwitter: @VilissaThompson
Site: Ramp Your Voice

Meet the Contributor

Photo of Imani Barbarin
Imani Barbarin is from Pennsylvania and is founder of the disability blog CrutchesAndSpice.com. A recent graduate of the Masters Program at The American University of Paris, she has set her sights on diversifying the representations of disability in the media and society overall. You can find her on Patreon (patreon.com/ImaniBarbarin), Twitter @Imani_Barbarin and Facebook.”