Depaul Chronic Illness Presentation

University of Michigan – Ann Arbor

Graduate Student, Sociology Ph.D. Program

Leslie Rott

Personal Problems As Public Issues: Dealing with Chronic Illness in the Academy

Strong at the Broken Places

- Richard M. Cohen,

“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).

The Impact Of Illness

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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

Personal Problems: My Chronic Illness Story

It feels like someone is pulling out my finger nails

It feels like I’ve been hit by a truck…

It feels like someone is sticking a fork in my back

It feels like someone is sitting on my face

Welcome to the Strange and Wacky World of Lupus

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.

! Before

“Doctor, Doctor, Give Me The News/ I’ve Got a Bad Case Of…” What?

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…

Why Me?

Personal Problems " Public Issues

realized, given my own situation, that I needed to plan ahead.

!I

one of my own students became severely ill on top of being chronically ill, the results were devastating.

! When

The Importance of Asking for Accommodation

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* 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.

“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).

The Importance of Asking for Accommodation Cont.*

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Time to degree

– Afternoon naps – Night classes

Multiple medications with a variety of instructions and times Time spent at computer Stairs Temperature Fatigue

Example Accommodations

Are you sure you want an academic job?

Maybe being ill will be good for your career.

Ever tried Ritalin?

When I Asked For Help, The Response I Got Was…

“If You Can’t Cut It For Any Reason, You Shouldn’t Be Here”

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undergrad or graduate school, I think the trajectory of, not only my life, but also my educational choices, would have been totally different.

– Had I been diagnosed with my illnesses prior to

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?

Planting the Seeds for Change

is this stranger telling me all of this stuff about her life???

! Why

So You’re Probably Wondering…

Seeing The Forest Through The Trees…

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– C. Wright Mills (1959)

“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.”

Public Issues

“But You Don’t Look Sick…”

Strong at the Broken Places

-Richard M. Cohen,

Welcome to your future” (6).

“Know this. Ninety million Americans battle chronic illnesses everyday.

Why Should Others Care?

“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

A Chorus Of Voices

- Mahatma Gandhi

“Be the change you want to see in the world.”

Prescriptions For Change

University of Michigan has a strong union for graduate student employees ! Most recent contract agreement

! The

Advocacy In Action

vary (I.e. visual/hearing impairments as opposed to chronic illness)

– Deals well with accommodations that don’t

graduate school

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

a recent forum I attended, people had the following to say about this resource:

! At

Services For Students With Disabilities (SSWD)

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?

! Using

Where Do We Go From Here?

- However, such a one-size-fits-all approach may not be appropriate in the real-world environment of higher education.

- 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.

Chronic Illness and Higher Ed

by a psychologist and physician vs. student led ! Goals: Shared experience – “You are not alone”

! Overseen

Support Group

– What about institutional resources???

w/o health/mental health professionals ! But…

! Informal

Support Group Cont.

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

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Resource Web Page

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video – List of campus resources – Patient information sheets (medication, etc.)

– Information on how to deal with doctors, including a

– Student stories via pod-cast

– Information on what chronic illness is

– Introduction (by me!!!)

Site will include:

Resource Web Page Cont.

could take several forms, with the singular goal of providing consistency across students and coordination across campus programs and organizations.

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Resource Guide

Schematic Outline

a few minutes, talk with those around you about what other possibilities there are in order to help chronically ill students in higher education.

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What Else Can We Do?

some people have health issues that aren’t stable enough for that to be possible

being an advocate isn’t for everyone

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! But

everyone is “out” about such issues (Just Google my name…)

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Campus Climate

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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.

Faculty Have Issues, Too!

fighting a serious illness or recovering from a major injury mutually exclusive with being a professor?”

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and attitudes impose cruel choices on faculty with hidden disabilities. One key to resolving these choices is greater institutional flexibility.”

! “Institutions

“Hidden Disability and an Academic Career”

“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.”

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“Hidden Disability and an Academic Career” Cont.

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* Beretz, Elaime. (2003). Hidden Disability and an Academic Career. Academe, 89, 4: 51.

“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.”

“Hidden Disability and an Academic Career”* Cont.

ill individuals fighting for themselves definitely seems counterproductive…

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most important thing we can do in this fight is to come together as a community.

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What Remains…

- “Proud,” Theme Song from The Biggest Loser

“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 […]”

So What Have You Done Today?

Or visit me on the web at: http://www.gettingclosertomyself.blogspot.com

Questions??? Email: [email protected]

Thank You!!!