The Michigan Daily — michigandaily.com
12 — Wednesday, March 31, 2021
statement
“They did not mean me when they said disabled”
BY MARISA WRIGHT, STATEMENT DEPUTY EDITOR
T
hey tell me I look so healthy. They
tell me I’m just so young. They just
cannot believe it. They ask me if
I’m really sick, like am I really sure? They
ask me if I’ve actually received a diagnosis.
They tell me it’s in my head, that it’s psy-
chosomatic. They tell me it’s part of being
a woman.
There are so many things people tell me
about my own body. If they’re not telling
me, they’re second-guessing the informa-
tion and descriptions I share.
Me disclosing an illness or disability
that is invisible, which is to say it is not
observable or evident in any readily appar-
ent sense, often leads to these kinds of re-
actions. Without the ability to observe my
condition, many people question or refuse
to believe its validity.
Aside from any symptoms, the reality
of living with an invisible condition is that
people — doctors, family, friends, profes-
sors, coworkers and so on — simply won’t
believe you. They will label you as over-
dramatic, tell you that you’re just lazy or
call you a liar.
LSA senior Cheyanne Killin, who has
multiple chronic illnesses stemming from
a rare genetic connective tissue disorder
called hypermobile Ehlers-Danlos Syn-
drome (hEDS), shared her experience
with this reality in an email to The Michi-
gan Daily.
“Because I do not look visibly disabled,
many people often assume that I’m not
actually sick, or, worse, that I’m actually
only mildly sick and exaggerating my con-
ditions for personal gain and/or malicious
intent,” Killin wrote.
In medical settings, this kind of disbe-
lief can have extreme consequences. Prop-
er diagnosis and treatment are predicated
by a doctor taking their patient’s concerns
and description of symptoms seriously.
When they don’t, patients can suffer un-
necessarily.
It is easier for a doctor’s unconscious
biases to play a greater role in their evalu-
ation and course of treatment, particularly
when conditions are not visible to a doc-
tor, which is the case for 96% of the nearly
133 million Americans with at least one
chronic illness. In this way, a doctor’s bi-
ases about one’s identities can stand in the
way of proper treatment.
Doctors are less likely to believe and
properly treat women’s pain than men’s.
Doctors also undertreat Black Americans’
pain relative to white Americans. Black
women in particular are harmed by doc-
tors who dismiss their concerns and im-
properly treat them: ProPublica reports
that “a black woman is 22 percent more
likely to die from heart disease than a
white woman, 71 percent more likely to
perish from cervical cancer, but 243 per-
cent more likely to die from pregnancy- or
childbirth-related causes.” Doctors’ bias
against fat people and queer people also
leads to worse health outcomes.
Killin has felt this acutely when treated
by male physicians.
“I was often told that I was just anx-
ious, stressed, or pregnant,” Killin wrote.
“If those were negated, like a negative
pregnancy test, I was just shown the door
without options or treatment. I’ve been
sick since October 2017, and I am just now
finding out exactly what is going on with
my body.”
For my own primary condition endome-
triosis, patients typically face a diagnostic
delay of seven to 10 years from the onset of
disease. In my case, a doctor misdiagnosed
me with appendicitis — for which I un-
derwent an appendectomy — seven years
before I received my proper diagnosis of
endo. For those seven years, my pain was
untreated and the progression of the dis-
ease continued.
While part of this diagnostic delay is
due to doctors’ lack of training on condi-
tions that are traditionally associated with
the female reproductive system, it is also
certainly caused in part by doctors who
dismiss their patient’s pain as “part of be-
ing a woman.”
Art & Design senior Anna DeLuca, who
has endometriosis and chronic migraines,
shared a similar experience in trying to re-
ceive a proper diagnosis and having doc-
tors dismiss her pain as a woman.
“Especially if you initially go in for
painful periods, you are often dismissed
because you know, periods are supposed
to be painful or whatever,” she told me in a
Zoom interview.
DeLuca described the impact this dis-
missal had on her.
“And then you’re sort of hit with that
wall and then you can’t say anything
else,”DeLuca said. “When you are imme-
diately dismissed I shut down, I feel like
I sort of I can’t say anything else because
you know they’re not going to listen and
so, then you try it again with another doc-
tor and you get the same experience.”
In addition to complicating diagnosis
and treatment in medical contexts, the
pervasiveness of disbelief of invisible con-
ditions affects issues of access to resources
for chronically ill and disabled people, in-
cluding government benefits and accom-
modations at school or work. At the Uni-
versity of Michigan, the laborious process
required to prove a need for accommoda-
tions through the Services for Students
with Disabilities office can leave a lot of
students out.
DeLuca explained how the form SSD
requires to request accommodations is “so
long” and requires that your doctor com-
plete most of it. When DeLuca needed to
renew her request with SSD before her
second year, she was uninsured, so the
possibility that her doctor might charge
her for filling out the form meant she
didn’t feel like she could request accom-
modations through SSD.
“I couldn’t (get the form completed) in
time, and at that point, I sort of just looked
at the reality in front of me,” Deluca said.
“I felt and still feel like this is not for me.
They did not mean me when they said dis-
abled.”
In addition to an arduous process to
prove one’s disability status, internalized
ableism about who and what counts as a
disability can lead to feelings of unworthi-
ness when it comes to seeking accommo-
dations.
Writer and journalist s.e. smith wrote
about not feeling “‘disabled enough’
because there was nothing outwardly
wrong,” which ultimately meant smith felt
unable to ask for accommodations.
The issue of who “counts” as disabled
has come into sharp focus with the distri-
bution of COVID-19 vaccines. Across the
United States, vaccine eligibility has been
structured in phases with the most vul-
nerable receiving the highest priority to
receive a vaccine. When people with un-
derlying health conditions became eligible
for the vaccine, young people with invis-
ible conditions subsequently faced inva-
sive questions about why they qualify for
the vaccine. Their underlying condition
is not visible, and so others, often able-
bodied people, feel entitled to know their
personal health information as some sort
of justification.
Even within the disability community
itself, evidence (or the lack thereof ) of an
illness or disability can create tension.
“Some call it the hierarchy of disability;
the complex calculus of who is ‘more dis-
abled’ that some people seem to enjoy en-
gaging in,” smith explained. “Those with
very evident disabilities are at the top of
this hierarchy, while those who can pass
as nondisabled are somewhere toward the
bottom.”
Ann Heffernan, an LSA collegiate fel-
low in the Department of Political Sci-
ence, teaches a course called “Disability:
A Democratic Dilemma.” She spoke to me
over Zoom about the effort to include dif-
ferent types of disabilities, such as chronic
conditions and mental health conditions,
within the community.
“The initial disability studies and dis-
ability rights movement tended to privi-
lege visible disabilities, and I think it’s
only recently — as in the last twenty or
thirty years — that conditions that are
disabling that may have varying visibility
have become part of the analysis of what
we mean when we talk about disabilities,”
Heffernan said.
While this historical privilege still plays
into our conceptions of disability today,
it is also important to acknowledge that
there is a different and important kind of
privilege accorded to those with non-evi-
dent disabilities.
With disabilities that are evident, stig-
ma is pervasive. Heffernan has cerebral
palsy and spoke about times in her life
when she has felt “pressure to not look so
disabled.”
For those of us with nonapparent con-
ditions, we can mostly move through the
world with the ability to pick and choose
who, how and when we disclose our sta-
tus/conditions. This is advantageous sim-
ply for the sake of privacy, but since dis-
closure of disability status can affect job
outcomes and relationships, it is also a
privilege with huge consequences.
Recognizing this privilege, Killin noted,
“If I’m in an ableist environment (even
though it’ll be painful), I carry the privi-
lege of being able to ‘pretend’ that I’m
able-bodied. I can present research, meet
professors, go to job interviews, etc., with
the option of disclosing my disability or
not.”
The reason these privileges exist is not
a hierarchy created or perpetuated by dis-
abled people. They are created by ableism
in our culture that advantages being able
to “pass” as able-bodied. It is the same
ableism that questions people’s lived ex-
periences with chronic illnesses and dis-
abilities just because they aren’t immedi-
ately observable. Ultimately, this problem
will not be solved if ableism continues to
be perpetuated, mostly by able-bodied
people.
At the end of my interview with DeLuca,
I asked her what she wishes able-bodied
people knew about her experience. “I wish
people had respect for situations or per-
spectives that they do not know anything
about, and that can be said for so many dif-
ferent identities,” DeLuca responded. “It’s
just sort of that moment of like, I just want
to exist peacefully as a disabled person,
but I cannot, that is not an option.”
After a moment of silent contemplation,
she went on, “I just want the basic respect
to not have to explain myself every day for
you to validate me … I want people to have
that perspective of even if you are frus-
trated that I need a specific thing, I am in-
finitely more affected by this. And I think
that kind of just comes down for people
to understand that this is not about them,
this is about me.”
ILLUSTRATION BY EILEEN KELLY