Disability Studies:
Research Questions &
Methodologies
Dani Stock
INTEG 221 Guest Lecture
4 Feb. 2015
Hello!
O I’m Dani Stock, a PhD candidate in the
English Dept. at UW
O I study representations of illness on the
Internet (on blogs, Twitter, Facebook, and
online communities)
O I ground my research in the tools,
questions, and concerns of Disability
Studies and my work is cross-disciplinary
Group Activity, Part 1
O A brain warm-up!
O Class brainstorming session
O Make a list of characters from your favourite
books, stories, fairytales, movies, television
shows, songs, plays, etc. who are
represented as having disabilities.
O Examples: Captain Hook in Peter Pan, Jake
Sully in Avatar, Forrest Gump in Forrest Gump
Group Activity, Part 2
O Split into small groups.
O Choose one of the characters from our
brainstorming session that everyone in the
group is familiar with.
O Nominate one member as the note-taker
and complete the activity worksheet
collaboratively.
Group Activity, Part 2
O
1. Write a few notes describing the character’s
disability.
O
2. Think about the state/condition/quality that you
listed as disabling. What, specifically, makes this a
disability? Discuss.
O
3. List some of the ways that your character is
represented in the story.
O What is the character’s role in the story?
O How do other characters respond to her/him?
O From what you can remember, what language is
used in the text to describe the character and/or the
character’s disability?
How I Got Here
O I “discovered” the discipline of Disability Studies
during my Master’s degree
O I was interested in thinking about fictional
representations of illness in 19th century
American writing by female authors
O Like many other scholars in DS (a discipline I
was unaware of then), I noticed how
illness/disability were used in novels, stories,
film, and TV (often) as a way to reinforce
negative and oppressive cultural stereotypes
(and, sometimes, to transgress them)
How I Got Here
O In my PhD, I turned to nonfictional
representations of illness in contemporary
Internet contexts
O Now I explore how certain cultural
expectations about what it means to be a
“sick person” (temporarily, chronically, or
terminally) are reproduced or disrupted
when people share their firsthand
experiences online
Defining Disability Studies
Disability Studies
O DS is an academic discipline that emerged
from disability rights activism and is
supported by the work of activists,
independent scholars, and academic
researchers
O It revolves around questioning the notion of
“the norm” and “normalcy” and critiquing
ableist social structures
O Let’s look at some guiding principles of
DS…
Group Activity: Discussion
O What happened in the first part of our
exercise when we started listing characters
with disabilities and identifying those
disabilities?
O What were we doing?
1. Disability is socially
constructed
O In our brainstorming session, we were
constructing the category of “disability” by
the simple act of deciding which bodies
should belong there
O As a concept, the notion of disability
introduces an absolute state of being
O It creates a (false) binary between ABLED
and DISABLED, ABILITY and DISABILITY
1. Disability is socially
constructed
O “In the process of disabling people with
disabilities, ableist society creates the
absolute category of disability” (Lennard
Davis, Enforcing Normalcy 7)
O What does Davis mean here?
O How is disability socially constructed? (Refer
to the essay by Margaret Price)
Group Activity: Discussion
O Returning to your group worksheet, how did
you describe your character’s disability?
What makes it disabling?
O Which of your points subscribe to the model
of disability as socially constructed?
O Which of your points support a medical
model of disability?
1. Disability is socially
constructed
O The category of disability prevents us from
seeing differently abled bodies as existing along
a continuum
O Instead, one is either “disabled” (and his or her
life is defined by this label) or “normal”
O “[T]he object of disability studies is not the
person using the wheelchair or the Deaf person
but the set of social, historical, economic, and
cultural processes that regulate and control the
way we think about and think through the body”
(Lennard Davis, Enforcing Normalcy 2)
2. Able-bodiedness is
temporary
O I don’t identify as a person with a disability;
instead, I consider myself temporarily able
bodied (TAB)
O DS acknowledges that disability is a reality
of human existence
O While we cannot all claim this subject
position right now, we can each move in and
out of disability
2. Able-bodiedness is
temporary
O Recognizing this means that we can stop
treating people with disabilities as
exceptional, terrifying, or pitiable
3. Disability is a subject
position like race or gender
O At the same time that we acknowledge
able-bodiedness as temporary, we must also
accept that people with disabilities are
different from TAB people
O As a marginalized group, people with
disabilities are entitled to specific rights,
services, and accommodations
O This extends from the reality that disability
is socially constructed
4. Language matters
O Paying attention to language is central to
reframing the way that disability is
understood
O Language is power
O WHO is allowed to speak?
O HOW is disability spoken about?
Group Activity: Discussion
O What did you notice about how your
character is portrayed in the narrative?
O Does this representation stigmatize
disability? Is it a fair representation? Is the
character defined by his/her disability or is
he/she portrayed as a complex human
being? Is the disability an occasion for
overcoming, tragedy, inspiration, or pity?
4. Language matters
O WHO: “Nothing About Us Without Us”
O WHAT: certain describing words demonize
people with disabilities, creating stigma;
they create worries, fears, or fantasies about
disability (even “positive” representations
can be damaging)
5. The concept of a “norm” is
an ideological tool
O All of these concepts combine to form the
political stance of DS
O Ultimately, the concept of a “norm” is an
invention that has been used to oppress
people who are regarded as “deviant” and to
assert homogeneity in the interest of
political and economic agendas
O For example, the changing understanding of
“senility” in old age
Disability Studies
Methodology
DS Methodology
O As Price explains, there is no single
methodology for doing Disability Studies,
just as there is no single academic
department that “owns” the discipline.
My Methodology
O I approach Disability Studies from the angle
of new media analysis, which stems from
the discipline of English Language and
Literature.
O I study digital media artifacts (or texts) and
practices to see how they reproduce or
disrupt an ableist/normative understanding
of human embodiment.
My Methodology
O I analyze websites as texts, looking at:
O Design (what does a site look like and how
can you use it?)
O Content (what images and text appear?)
O Political economy (who owns the site and
who profits financially from its use?)
O Social practices (who uses the site and
how?)
Disability and the Internet
O The Internet is an exciting space for self-
expression because it lacks the kind of realworld gatekeepers that control who can have
a voice and an audience.
O However, there are also many barriers to
widespread adoption of Internet
technologies, and these are particularly felt
by the disability community.
Disability and the Internet
O Rather than researching the technological
barriers to access, I look at accessibility in terms
of whether or not certain spaces allow for
individuals to represent themselves
O When people set out to share their experiences
of disability and illness online, is there space for
them to do so?
O Is it possible to be ill or disabled online—to
make that presence known and to exist in that
subject position without feeling the pressure to
be “normed” or rehabilitated or fixed?
Illness on the Internet
O I look to the spaces where this is not
enough of a possibility and I explore why
that is so…
O For example, one website I study called
PatientsLikeMe asks people to share their
illness experiences in a way that classifies
them as “medical cases”
O I also look into new media practices (such
as the writing of personal illness narratives
online) to explore how these relate to the
social construction of disability
Disability Studies Research
Example: Blogging Dementia
Dementia: Language and Stigma
O The language we use to talk about
dementia is a real problem
O We receive socially constructed messages
about what dementia is through how it is
talked about in public spaces (mainstream
media, classrooms, online)
O Gloria Sterin’s (2002) “Essay on a Word”
provides a critique of the oppressive power
of the word “demented”
Dementia: Language & Stigma
Oppressive
Person-centred
Demented person
Person with dementia
Dying of, struck with, suffering from,
destroyed by, dealing with… dementia
Living with dementia
The never-ending funeral, the burden of
Alzheimer’s, the long goodbye
Journey with dementia
Empty shell/husk, vacant gaze, walking
dead or living dead (zombie metaphor)
Person
Behaviours as problems: anxiety,
agitation, wandering, pacing, decreased
attention span, poor short term memory
(Fazio 1996)
Behaviours as positive characteristics:
eagerness, energy, exploring, motivated,
curious, spontaneous (Fazio 1996)
People with dementia as
non-persons
O One of the received narratives about
dementia is that the condition leads to a
loss of selfhood
O Much of the fear surrounding dementia is
related to the worry that one will eventually
cease to be a person
O This notion of personhood is based on
normative standards for self-expression
(“normal” abilities of communication,
memory, reasoning, relating)
Dementia Blogs
O Blogs are spaces for the construction of
selfhood; we construct our identities through
the act of self-representation
O For people with dementia, the blog
becomes a response to the social
construction of ADRD as self-destroying, as
well as a space where this social construct
is reinforced
O The blog becomes an archive of the self
Dementia Blogging
Imposed Suffering
O How can we think about the experience of dementia
as one of many valid and fully human states of
being?
O Despite the fact that ADRD is a set of conditions that
researchers hope to one day cure, for now, we must
acknowledge that living with dementia is a reality
O Like everyone else, people with dementia are
entitled to respect, support, love, companionship,
and fulfillment
O Ostracization and dehumanization create disability,
since they impose obstacles to individuals’ attempts
to live well
Thanks for being awesome!
Questions?
You can reach me at:
dstock@uwaterloo.ca