You are on page 1of 38

Personal Problems As Public

Issues:
Dealing with Chronic Illness in the
Academy

Leslie Rott
Graduate Student, Sociology Ph.D. Program
University of Michigan – Ann Arbor
The Impact Of Illness
“Chronic conditions attack body and spirit, assaulting the
quality of our lives. Some are life-threatening. All are
life-altering. Ever so slowly, moment by moment,
function and sensation cease. Muscles and nerves
malfunction. The body’s processes grow difficult. Our
view of ourselves as normal human beings making our
way in a neutral world is challenged as, in the eyes of
others, we become our illnesses” (xvi).

- Richard M. Cohen,
Strong at the Broken Places
Personal Problems:
My Chronic Illness Story
! Had severe dizzy spell that required trip to
hospital in 2006
! Had multiple strept throat, pink eye, and fungal
infections during 2006-2007 school year
!In the summer of 2007, began having joint and
muscle aches after working out, and rib pain
! Diagnosed with lupus (SLE) and rheumatoid
arthritis (RA) in April 2007 at 22 years old
Welcome to the Strange and
Wacky World of Lupus
It feels like It feels like
It feels like
someone is someone is
someone is
pulling out my sticking a fork in
sitting on my face
finger nails my back

It feels like I’ve


been hit by a
truck…
“Doctor, Doctor, Give Me The
News/ I’ve Got a Bad Case
Of…” What?
! Before my diagnosis, I barely knew what
lupus was and thought only old people got
arthritis…I was certainly wrong on all
accounts…
! What this helps to emphasize is the
difficulty that those around me have had in
dealing with this news.
Personal Problems " Public
Issues

Why Me?
Very early on in my process of dealing
with my illnesses, a friend of mine told
me that I would make something good
out of this experience. So here I am…
The Importance of Asking for
Accommodation
! When one of my own students became
severely ill on top of being chronically ill,
the results were devastating.

!Irealized, given my own situation, that I


needed to plan ahead.
The Importance of Asking for
Accommodation Cont.*
! “All too often, students who have not required
accommodations in the past fail to anticipate potential
scenarios until a health crisis develops and the need
for accommodation is evident and urgent” (2).
! “Whereas in grades K through 12, the student may
have been ‘entitled’ to accommodations, there are no
entitlements in the postsecondary environment.
Students with disabilities must identify themselves to
be eligible for services, must present documentation of
their disability, and must request necessary
accommodation” (3).
* Edelman, A., V. Schuyler, and P. White. (1998). Maximizing Success for Young
Adults with Chronic Health-Related Illnesses. American Council on Education, Health
Resource Center.
Example Accommodations
! Multiple medications with a variety of instructions
and times
! Time spent at computer
! Stairs
! Temperature
! Fatigue
– Afternoon naps
– Night classes
! Time to degree
When I Asked For Help, The
Response I Got Was…

Are you sure Ever tried


you want an Ritalin?
academic job?

Maybe being ill


will be good for
your career.
“If You Can’t Cut It For Any
Reason, You Shouldn’t Be
Here”
Planting the Seeds for
Change
! How many students want, and are capable of,
completing an education at an academically
rigorous institution such as U of M, but opt not to
attend because of their illnesses?
– Had I been diagnosed with my illnesses prior to
undergrad or graduate school, I think the trajectory of,
not only my life, but also my educational choices,
would have been totally different.
So You’re Probably
Wondering…
! Why is this stranger telling me all of this
stuff about her life???
Seeing The Forest Through
The Trees…
Public Issues
! “Men do not usually define the troubles they
endure in terms of historical change and
institutional contradiction [...] They do not
possess the quality of mind essential to grasp the
interplay of man and society, of biography and
history, of self and world. They cannot cope with
their personal troubles in such ways as to control
the structural trans-formations that usually lie
behind them.”

– C. Wright Mills (1959)


“But You Don’t Look Sick…”
Why Should Others Care?
“Know this. Ninety million Americans battle
chronic illnesses everyday.
Welcome to your future” (6).

-Richard M. Cohen,
Strong at the Broken Places
A Chorus Of Voices
“When the Nazis came for the communists,
I remained silent; I was not a communist.
Then they locked up the social democrats,
I remained silent; I was not a social democrat.
Then they came for the trade unionists,
I did not speak out; I was not a trade unionist.
Then they came for the Jews,
I did not speak out; I was not a Jew.
When they came for me,
there was no one left to speak out for me.”
- Martin Niemoller
Prescriptions For Change

“Be the change you want to see in


the world.”

- Mahatma Gandhi
Advocacy In Action
! The University of Michigan has a strong
union for graduate student employees
! Most recent contract agreement
Services For Students With
Disabilities (SSWD)
! Ata recent forum I attended, people had the
following to say about this resource:

– Don’t understand what it’s like to be in


graduate school

– Deals well with accommodations that don’t


vary (I.e. visual/hearing impairments as
opposed to chronic illness)
Where Do We Go From Here?

! Using DePaul as a model, it is clear the U of


M is not where it needs to be on such issues
! But how do we get from A to Z in the most
productive way possible?
Chronic Illness and Higher Ed
- One thing that I have learned as a member of
the chronic illness community is that while
the diseases and their symptoms are different,
much of the experiences of chronically ill
people are the same.

- However, such a one-size-fits-all approach


may not be appropriate in the real-world
environment of higher education.
Support Group
! Overseen by a psychologist and physician
vs. student led
! Goals: Shared experience – “You are not
alone”
Support Group Cont.
! Informal w/o health/mental health
professionals
! But…
– What about institutional resources???
Resource Web Page
! This page will be linked to the University
Health Service website
! Partnering with clinicians, we hope to have
these resources available so that doctors can
provide their patients with tangible
information
Resource Web Page Cont.
! Site will include:

– Introduction (by me!!!)


– Information on what chronic illness is
– Student stories via pod-cast
– Information on how to deal with doctors, including a
video
– List of campus resources
– Patient information sheets (medication, etc.)
Resource Guide
! Thiscould take several forms, with the
singular goal of providing consistency
across students and coordination across
campus programs and organizations.
Schematic
Outline
What Else Can We Do?
! Fora few minutes, talk with those around
you about what other possibilities there are
in order to help chronically ill students in
higher education.
Campus Climate
! Not everyone is “out” about such issues
(Just Google my name…)

! But being an advocate isn’t for everyone

! And some people have health issues that


aren’t stable enough for that to be possible
Faculty Have Issues, Too!
! It should come as no surprise that academics also
face problems when confronting illness and
disability.
! So chronically ill graduate students who aspire to
academic careers are going to face many of the
same issues that they did as students.
! And as a graduate student who has to teach, there
are many difficulties.
“Hidden Disability and an
Academic Career”
! “Institutions and attitudes impose cruel
choices on faculty with hidden disabilities.
One key to resolving these choices is
greater institutional flexibility.”

! “Isfighting a serious illness or recovering


from a major injury mutually exclusive with
being a professor?”
“Hidden Disability and an
Academic Career” Cont.
! “One can adjust to an illness, even regain a
semblance of health, only to plunge headlong into
the sociological challenges of survivorship.”

! “But a failure to find adequate accommodation for


their condition frequently takes that decision out
of their hands. Academics with hidden disabilities
must navigate a nightmarish maze of cultural
barriers, negative attitudes, and structural
impediments.”
“Hidden Disability and an
Academic Career”* Cont.
! “It is impossible to determine at any one time (or in
advance) what would be equitable and reasonable.
Standardized policies, therefore, do not establish a
true remedy. Accommodations must be calibrated to
individual needs and determined by such factors as
the timing of the illness in the career, the length of the
acute phase […] the effectiveness of drugs or other
therapies, the prognosis, and so on. Since chronic
illness is not self-limiting, all accommodations must
be open-ended and expanded or modified as the
condition changes.”
* Beretz, Elaime. (2003). Hidden Disability and an Academic Career. Academe,
89, 4: 51.
What Remains…
! The most important thing we can do in this
fight is to come together as a community.

! Chronicallyill individuals fighting for


themselves definitely seems
counterproductive…
So What Have You Done
Today?
“I look into the window of my mind
Reflections of the fears I know I’ve left behind
I step out of the ordinary
I can feel my soul ascending
I am on my way
Can’t stop me now
And you can do the same […]
What have you done today to make you feel proud?
It’s never too late to try
What have you done today to make you feel proud?
You could be so many people […]
We need a change
Do it today […]”

- “Proud,” Theme Song from The Biggest Loser


Thank You!!!

Questions???
Email:
lesliero@umich.edu

Or visit me on the web at:


http://www.gettingclosertomyself.blogspot.com

You might also like