Action Project - Disability - Thursday, November 21, 2019 - The Daily Cardinal

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Action Project Issue, Fall 2019

WHAT’S IN A NAME? The Disability Issue

MIDDLE LEFT PHOTO COURTESY OF BAYOU CITY HALF MARATHON, ALL OTHERS KALLI ANDERSON AND WILL CIOCI/THE DAILY CARDINAL

“…the great state University of Wisconsin should ever encourage that continual and fearless sifting and winnowing by which alone the truth can be found.”

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Action Project Issue, Fall 2019 dailycardinal.com/projects/disability

GRAPHIC BY JULIA MENDELSOHN

The interaction between labels and identity is a double-edged sword — it can build community and bring accommodations, but these words often carry stigmas and assumptions ingrained in our society.

What’s in a name? Power of labels in disability identity, societal perception

By Sonya Chechik FEATURES EDITOR

After obtaining a law degree from UW-Madison, Nicki Vander Meulen attempted to find work as a lawyer, but received rejection after rejection.

“The minute any law firm found out I was disabled or autistic no one hired me,” she explained.

These firms had concluded that since she was unable to perform simple office tasks — like making copies — she would also be an ineffective lawyer.

After being turned down from 300 other opportunities Vander Meulen — who was diagnosed with cerebral palsy and Aspergers syndrome when she was 3-and-ahalf — opened her own practice and now spends her days representing juveniles.

“I can argue a legal case very easily but it will take me forever to fold, staple and line things up because my hands are impaired,” she said. “They made the wrong assumption.”

In this sense, the label “disabled” opened the door for potential employers to lower their expectations of Vander Meulen’s competency.

The language our society uses surrounding disability is powerful and always changing. While some of these developments aim to improve accommodations and reduce assumptions, they maintain the ability to reinforce negative stigmas and stereotypes.

Defining disabilities Labels — like “disabled” and the many words our society has to discuss disabilities — can be key to helping humans make sense of society as long as they are used correctly, explained Dr. Will Cox, a social psychologist in stereotyping and bias at UW-Madison.

“Generally speaking, a label itself isn’t a bad thing,” he said. “If you’re using a label without taking that label and generalizing it to more negative things or to make assumptions about people, they can be useful.”

However, how people perceive and understand disability depends on the time period, culture and society’s perspective, said Kate Lewandowski, an access consultant at the McBurney Disability Resource Center.

Lewandowski herself identifies as culturally Deaf and part of the linguistic minority who use ASL to

communicate. She does not identify as disabled.

Our society has words to describe many different disabilities — and these words and definitions continue to develop with time.

In the past, the Deaf community, for example, were labeled as deaf and dumb, then hearing imparied and now deaf or hard of hearing, Lewandowski explained.

Likewise, people with intellectual disabilities used to be called feebleminded, then mentally retarded, then cognitive disabilities until they reached their current classifcation.

“Definitions and how people are identifying can push the society [to change language], but it takes time,” she said through an ASL interpreter.

“It definitely takes time for the larger society to accept those words and those identities.”

With any stigmatized group, especially as they become more visible in society, there is always a learning curve with what labels to use, Cox said.

Even now phrases like hearing impaired, mentally retarded, handicapped and other words and labels that have been deemed offensive are still part of everyday vocabulary.

Lewandowski argued that we need to look at who is most perpetuating the use of these words and the perception that comes with them — whether it’s the news, medical professionals, legal framework or society as a whole.

“The hardest [word] is still the R word. That’s the one I want to get rid of completely,” Vander Meulen shared. “It has been used in such a negative context and some words you just can’t get back.”

After repeated demand, Wisconsin removed “mentally retarded” from all legislation earlier this year.

Often changes in language are driven by the community of people the labels are meant to describe, but it takes cooperation from broader society to implement these changes.

“The reason for all this change in language, all this back and forth is because until 10 years ago no one ever asked individuals with disabilities what they wanted to be called. They just named us,” Vander Meulen said.

Impact on individual identity There are two broad ways in

which labels are applied with regard to disability identity — person-first or identity-first language — but disability is a spectrum and individuals have different perceptions of their disabilities and their identity as disabled.

Person-first language means putting the person before the disability, explaining what a person has and not who a person is. For example, a person who has a disability instead of a disabled person.

In contrast, identity-first language is used to take back the word and is often embraced when people see their disability as a key part of their identity. It is most common in the Deaf and Autistic communities.

Both Vander Meulen and Lewandowski use identity-first language, but recognized this is more common in their own communities — Autistic and Deaf, respectively — than in others.

Lewandowski clarified that many individuals might not identify one way or the other because they haven’t ever had the opportunity to decide due to our society’s overall lack of conversation regarding disability identity.

“It’s really hard to say you’re in one camp or the other camp because honestly I feel like exposure and awareness of that concept is not typically talked about,” she said.

Vander Meulen shared her Autism is not only a source of pride, but her identity as an Autistic Adult or an “Aspy” — her preferred labels — has helped her find a community.

“When people ask why we want to be labeled it’s because we want to be seen as a whole. We want to exist, shall we say, instead of just a scatter of people,” she said. “We got sick of identifying ourselves as other. This is a way to say we are part of a community as a whole.”

However, she clarified that every autistic — and every person with a disability — is different.

More than just a word While labels can help build communities of people with shared experiences and help others know what to expect from a person with a certain disability, the development of these expectations can also lead people to make incorrect assumptions.

“Labels are complicated because on the one hand we need words and labels for things to just be able to talk

about issues but then also they can kind of bring with them stigma or stereotypes,” Cox said.

We gain these associations from a young age so they become well rehearsed, he added.

And these stigmas are more than just how we think about people — an individual’s identity and behavior can be influenced by the way society labels them, according to the American Psychological Association.

Human brains absorb messages so depending on how a label is interpreted, individuals can internalize expectations of their identity and competency, Cox explained.

While labels do contribute to the assumptions people make, these same labels are necessary to providing individuals with accommodations they may need in school, work or everyday life.

“Absolutely it’s a double-edgedsword one hundred percent,” Vander Meulen expressed.

The Americans with Disabilities Act defines disability as a physical or mental impairment that substantially limits one or more major life activities.

Originally signed into law in 1990, the ADA was amended in 2008 to expand the definition of disability in order to provide accommodations and protections to more people.

But in order to receive these accommodations people who wouldn’t otherwise identify themselves as disabled — like Lewandowski — must apply the label to themselves in order to receive any accommodations they might need whether they want to or not.

“There is so much history and stigma with disability and that’s very powerful. I still think stigma is happening today,” she said. “When you identify as disabled, I think naturally able-bodied people have a reaction to it — they have a reaction to the word ‘disabled.’”

As people begin to recognize the stigma around the label disabled, they — especially able-bodied people — want to be sensitive to the language they’re using and have tried to make changes. Instead of disabled, the terms “differently abled” or “disAbled” are on the rise.

Lewandowski believes the intention was to change the stigma, but argues it does the opposite because it

reinforces that having a disability is a negative thing.

“You’re still not saying they’re an able-bodied person. You’re still saying this is a person with a disability — it has the exact same meaning behind it [as disabled],” she said. “But you’re saying ‘differently abled’ as a way to cover up ‘disabled.’”

Changing language, changing perception In response to this delineation between able and disabled and the systematic establishment of able as the default identity, a new term — neurodiversity — has gained traction, most prominently in the autistic community.

Neurodiversity — also expressed as neuro-typical versus neuro-divergent — is a way to counteract the word “normal” as applying to ablebodied or able-minded people.

“What is normal? We don’t know,” Vander Meulen said. “Normal is not a person — it’s a concept.”

With neurodiversity, it’s possible for neuro-diverse people — often meaning people with intellectual disabilities — to argue that their way of seeing the world is not abnormal but just another way of looking at things.

Language is dynamic, but it is not enough to only change the words we use. We must also change the connotations and perceptions behind these words, Lewandowski explained.

One in four Americans have a disability, according to a 2018 CDC report, which implies that the chances of having or knowing someone who has a disability at some point in one’s life is high. “[Having a disability] is part of what it means to be human,” Lewandowski said. “Until the attitude changes, why not use the word disabled? Why does it have to be perceived as a bad thing?”

Cox believes it is possible to make this change if we can take the time to listen to each other and pay attention to the meaning behind our words.

“There’s always going to be room for development and recognizing the way labels might bias the way we talk about or think about someone else,” he said. “Being open to changing the labels that by default pop into mind is always a good thing and just working to show that you care about other people’s experiences.”

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Action Project Issue, Fall 2019

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Students reflect on mental health services

By Addison Lathers SENIOR STAFF WRITER

If you ask students at UW-Madison what they know about University Health Services’ Mental Health Services on campus, you’ll likely get responses about how it’s convenient, free and student-oriented.

That’s how MHS tends to present itself: easy and accessible.

“We want to show up in ways that help you feel like you can access us and like we are your allies here on campus to make you feel supported, to feel connected, and to really thrive,” said Andrea Lawson, co-director of Mental Health Services, in a promotional video.

The UHS Instagram displays photos of dogs for #WorldMentalHealthDay and posts “Tips for Finals” like mitigating anxiety by taking deep breaths.

But actually seeing a mental health professional at UHS can be more complicated than their marketing implies.

Accessing services When Emily Fassbender, a senior at UW-Madison, initially reached out to MHS, she wasn’t sure what to expect.

After dealing with emotional instability, she had decided to try counseling and scheduled an Access Appointment via MyUHS. Access Appointments are the first step to seeking services at MHS, but it takes time for these appointments to occur.

Fassbender waited two weeks — the typical time frame — for her call with an “Access Specialist.”

During the Access

GRAPHIC BY ZOE BENDOFF

UW-Madison students looking for help with mental health struggle due to appointment limits, waiting periods and gaps in mental health services.

Appointment, students talk with an Access Specialist who will listen to concerns, ask questions about a student’s symptoms, experiences and resources, and connect them with the services they need — both on and off-campus.

It’s also the time students can request mental health providers with specific identities, background or training.

MHS recommends you set up appointments online, instead of calling, and schedule appoint-

ments for over the phone, instead of in-person.

“The lady I talked to on the phone during the Access Appointment seemed kind of excited for this match to be made with me and my provider,” Fassbender said. “It sounded like it would be a good fit.”

Fassbender wasn’t sure what factors were considered regarding the “match,” but assumed it had something to do with her motivation for seeking counseling or perhaps — more

simply — availability in the counselor’s schedule.

Later, when she tried to look up the name of the mental health professional she was assigned to, she couldn’t find them on the UHS website’s staff list.

“They didn’t say what kind of appointment it was either,” Fassbender remembered. “I’ve never been to a mental health person before. I didn’t really know what to expect. I was just told it was going to be like a general ‘get to know you’ kind

of thing.”

After two weeks of waiting following her Access Appointment, Emily had her first session at MHS. Their first meeting was a chance for Emily’s counselor to learn about her — like her general history regarding substance abuse, family relations and mental health history — and for Emily to learn about

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‘I wish they knew we existed’: Disability Rights Commission informs city

By Abby Schinderle SENIOR STAFF WRITER

Pizza? Salad? Sandwich?

A similar thought process usually goes through people’s minds when considering where to go for lunch, along with what you’re craving, how far away different restaurants are, how much time you have, how much money you’re willing to spend.

But for many people, where to go for lunch depends on whether the restaurant requires stairs to access it.

For Bella Sobah, the chair of Madison’s Disability Rights Commission, this is something she must take into consideration as a woman in a wheelchair with spinal muscular atrophy. And it’s something that she wants other people to be aware of too.

When asked what she wished Madison residents knew about the Disability Rights Commission, Sobah responded, “I wish they knew that we existed.”

Sobah is also a third-year law student at UW-Madison.

She’s been a member since 2017 and has served as chair for the past year.

“I don’t know [if ] a lot of people know we are another resource for voicing your concerns, and anyone is free to come to our meetings and make comments,”

Sobah said. “I wish people took more advantage of that.”

The Disability Rights Commission consists of 12 citizen members and one Common Council member. They work to recommend policy to the Mayor, Common Council and Department of Civil Rights, as well as studying and making suggestions to all City departments, committees and commissions.

“Our goal is to look at policies that are put forward and analyze them through the lens of how this could affect a person with a disability,” Sobah said. “Also to hear concerns from the community with regards to the disability community and trying to address those concerns in the city.”

The Disability Rights Commission recently met with Downtown Madison, Inc. about how to address a lack of accessibility in the downtown area.

They conducted a survey to gather feedback from community members about what they perceive to be the city’s biggest hindrances to accessibility.

“A lot of the feedback we got was about parking and the lack of accessible parking in the downtown area,” Sobah said. “A lot of businesses do have steps and are physically inaccessible.”

Additionally, much of the feedback from the survey pointed to a

lack of accessibility at Madison’s community events — specifically outdoor festivals, according to Sobah. Many festivals lack accessible outdoor bathrooms and are on grassy areas, making it hard to maneuver for some.

While Sobah considers Madison to be generally a disability-friendly city, one of the main goals of the commission is to encourage private businesses to be more accessible through a new initiative called the Access Madison Campaign.

The campaign was designed to help local businesses see the challenges posed against those with disabilities, according to Eric Koch, a commissioner on the Disability Rights Commission.

“We’re hoping that it will help businesses make small changes that can make a huge difference for folx with disabilities,” Koch said.

One of the goals of the Access Madison Campaign is to raise the public’s awareness of the Disability Rights Commission altogether by highlighting some of its work.

“As we get more work on it and have some more concrete proposals out there, we hope that members of the public see that work that we’re doing,” Koch said.

The commission is considering offering a sort of reward

to acknowledge businesses that go above and beyond what the Americans with Disabilities Act requires. Sobah hopes that by rewarding buildings with accommodations it will incentivize other businesses to do the same.

“It’s hard because we have more authority over city events rather than private businesses,” Sobah said. “Another thing that we started to do is figure out how to incentivize businesses to become more accessible and to figure out ways to strategize that.”

Over the past few months, one of the most pressing issues for the commission has been working with city officials to offer recommendations to a proposed city ordinance on plastic straws.

The goal of the ordinance is to reduce single-use plastics to be more sustainable in the city, and would fine restaurants for providing plastic straws without a customer asking for one first.

But for many people with disabilities, including Sobah, straws are relied on for drinking.

The Disability Rights Commission voted in September not to support the first draft of the ordinance. The commission instead offered an amendment to specify language and therefore shift the burden of having to ask for a straw off of the consumer,

Sobah said.

The amendment proposed by the Disability Rights Commission changed the requirement of a customer asking for a plastic straw to instead say that wait staff must first confirm with the customer before providing one.

“Our main concern is that there are a lot of people who do feel stigmatized when there is a lot of rhetoric surrounding the use of plastic straws being harmful to the environment,” Sobah said. “It kind of feels like you are doing something wrong by asking for something that you need. Hopefully, this will eliminate another obstacle that people with disabilities face in the community.”

Sobah said she felt encouraged that the straw ordinance was brought directly to the Disability Rights Commission for comments. The commission is hopeful that all city committees and commissions who create ordinances that may affect those with disabilities will do the same.

“The great thing about Madison is that it feels like people are willing to listen when we do say ‘Hey, this isn’t great for people with disabilities,’” Sobah said. “There is a willingness to at least sit-down and address those things.”

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‘Limbs are not a luxury’: Insurance fairness

By Kylie Ver Kuilen SENIOR STAFF WRITER

With a present propulsion to pass the Amputee Coalition’s Insurance Fairness bill, Wisconsin limb difference activists continue to promote insurance equality for all within their community.

There are currently two million people living in the United States with limb loss — Shawn Faessler is one of them.

The UW-Madison alum was fortunate enough to have insurance that would cover a prosthetic, restoring his mobility and independence.

However, the majority of amputees cannot say the same due to the inability to afford high insurance costs and the onerous obtainment process.

In 2002, his left leg was amputated after he survived trauma. A few months later, he saw what he thought his life could have become — an experience that would send him into a three-year depression and cause him to question his own abilities for over a decade to come.

“I saw three people out in public missing limbs. They were all panhandling,” Faessler reflected. “So I saw that and I had this mindset of, ‘If you’re missing a leg, you’re going to be panhandling.

This is the life you have in front of you.’

Such a perspective is not abnormal or irrational for the amputee and limb difference community to possess. Roderick Sewell Jackson, the first above-the-knee bilateral amputee to finish an Ironman and a hopeful 2020 paralympic, has been outspoken with his home-

lessness experiences.

Due to the financial burden of being an amputee without adequate insurance, Jackson and his mother were forced into homelessness for five years.

“She had to make the decision to get my legs amputated and she didn’t really have the funds necessary to get me prosthetics, so she filed for unemployment,” Jackson told Swimming World Magazine.

“Even though that got me the prosthetics I needed — the ability to walk — it put us in a financial bind.”

However, Faessler was fortunate enough to never face the threat of homelessness after his amputation. He went on to receive a job promotion, raise three children and enjoy an active lifestyle.

He expressed those accomplishments would not have been possible without the high-caliber insurance coverage he had at the time of his amputation.

“When I had my amputation, I had zero restrictions that I was aware of. I had zero cost. Once I had taken the ambulance and was at the hospital, everything was covered.

So, I had incredible insurance at the time,” Faessler said. “This doesn’t happen in this day and age. And

look at where I am now because of that. So for me personally, it’s given me the opportunity to live a happy and full life.”

He is lead advocate and certified peer visitor for the Amputee Coalition since July 2017, giving him the

Coalition’s Insurance Fairness bill within Wisconsin.

The Amputee Coalition is a nonprofit organization whose mission is to “reach out to and empower people affected by limb loss to achieve their full potential,” through education, support, advocacy and to promote limb loss prevention.

The non-profit coalition authored the Insurance Fairness legislation, and has lobbied for its implementation for over a decade.

Thus far, the legislation has been ratified in 20 states and received bipartisan support.

Although the bill has not been attempted inside Wisconsin yet, it is currently being drafted and awaits a formal introduction to the state Legislature

by Rep. Robert Brooks, R-Saukville.

The bill would potentially require all insurance GRAPHIC BY LYRA EVANS policies within the state to provide coverage for prosthetics and o p p o r - orthotics equal to or better than tunity to the federal Medicare program. volunteer and Additionally, it would abolish coversupport others with age caps and lifetime restrictions. amputations and limb differences.

“Really the goal [of the Insurance Since his time of involvement, Fairness legislation] is to end disFaessler worked alongside other crimination and to have external activists to end disparities among prosthetics treated the same as amputees. Recently, his efforts have internal prosthetics,” Faessler said. been dedicated to advocating for “Conceptually, it really is as simple legislation changes, including the as that.” implementation of the Amputee If the bill passes, Wisconsinites

could see the per member per month cost of insurance increase by $0.12 to cover the cost of prosthetics for all, as determined by eight states’ independent studies.

“The consensus in each study found that the cost of care would be minimal and the benefit to the individual, their family, and society, would be significant,” the Amputee Coalition synthesized.

The current reimbursement for prosthetics in Wisconsin ranges from $1,000 to $5,000 with prices of some devices reaching upwards of $50,000, according to data from the Hospital of Specialized Surgery.

Another barrier for amputees with private insurance plans is the common feature of “one prosthetic per lifetime” caps, which can be insufficient since prosthetics are not made to last a lifetime.

“But even then, the most expensive prosthetic limbs are built to withstand only three to five years of wear and tear, meaning they will need to be replaced over the course of a lifetime — and they’re not a one-time cost,” according to an ABC News article.

Until the bill is introduced to Wisconsin’s Legislature, Faessler and other activists will continue working towards the realization of the proposed law.

“My bigger picture and vision is to raise the standard of care for people with limb loss and limb difference and eliminate the stigma that just because you’re missing a limb doesn’t mean you aren’t a whole person,” Faessler said.

Edgewood program emphasizes lack of UW System ability to encourage students with intellectual disabilities to thrive

By Michael Parsky SENIOR STAFF WRITER

For years, Brianna Huebner listened to one of her students express her desire to attend college.

Not many opportunities presented themselves at the time for the student, who has Down syndrome. Huebner, then a high school special education teacher in Rockland County, found a college program that specializes in assisting individuals with intellectual and developmental disabilities.

“I often think back to high school when I was her teacher. I couldn’t have given her those experiences in the four walls of my special education classroom.”

Brianna Huebner Director of Cutting Edge Program

After being admitted, Huebner tracked the student’s progress and gawked at how the program changed her for the better.

“I just couldn’t believe my eyes,” Huebner said. “I often think back to

high school when I was her teacher. I couldn’t have given her those experiences in the four walls of my special education classroom.”

At The Cutting Edge Program offered by Edgewood College, she became independent, made new friends, developed a passion for art and started her own business to sell her designs, according to Huebner.

The success story at Edgewood underscores a growing importance for institutions of higher learning to offer services which accommodate students with intellectual disabilities. Programs intended for students with learning disabilities maintain their importance and figure prominently on college campuses. Educational opportunities contrived for individuals with developmental disabilities, however, remain low in number.

In Wisconsin, only five such programs exist, according to Huebner, who took over as director of Cutting Edge in 2015. Others include those at Madison Area Technical College, Bethesda College at Concordia University Wisconsin and Shepherds College. Just recently, the UW-Whitewater launched its LIFE program, the first of its kind in the UW System.

Founded in 2007, Cutting Edge is the state’s longest-running program for students with intellectual disabilities. The program provides students with disabilities “a full

college experience,” according to Huebner. This entails a mixture of academics, social support, independent living and prospects for future employment.

Although professional staff and other Edgewood students keep tabs on program participants, Cutting Edge takes a less-regimented approach and enables students to shape their daily schedules and activities.

“It’s a very individualized program where we give them the support they need based on their disability and areas that they need to improve upon,” Huebner said. “But we also give them that autonomy or that independence to make those decisions, day in and day out.”

Educational programs like Cutting Edge also look toward the future. Students participate in internships every semester to gain real-work experience. These range from jobs on campus to managing for UW-Madison’s men’s basketball team.

Huebner said that 85 percent of Cutting Edge graduates are employed and 75 percent of graduates are both employed and living independently — most students choose to reside in Madison post-graduation. One student with a computer science degree went on to work for American Family Insurance.

“Our students tend to want to

stay in the Madison area because that’s where they’ve built their network of support, where they feel comfortable,” Huebner said. “It’s where they’ve kind of built their story and what they’re going to do from that point on.”

Over in Whitewater, the new LIFE Program will attempt to accomplish similar goals to Cutting Edge. Development for the program began in 2015, and it welcomed its first cohort of eight students this fall.

The LIFE Program accepts students between the ages of 18-25 and offers a variety of educational, social and professional opportunities, according to program coordinator Ashlea Roselle. This includes a “leisure skills” course participants take with other undergraduate students, attending sporting events and oncampus entertainment and involvement in student organizations.

Being the first UW System program to serve students with intellectual disabilities, Roselle acknowledged the importance of granting educational opportunities to individuals who normally remain outside the purview of higher education. “[The LIFE Program is] helping an underserved part of the population that has a ton of potential, but has had limited opportunities,” Roselle said. “They not only provide opportunities for the enrolled

students, but for the campus community as a whole.”

While most universities offer well-funded and resource-based services to help students with learning disabilities such as dyslexia and ADHD, educational programs aimed to empower those with intellectual and developmental disabilities in Wisconsin linger on the peripheries.

Two of the state’s five intellectual and developmental disability programs border UW-Madison, the flagship campus of the UW System.

Huebner prescribed a change in mindset for Wisconsin’s higher education community. She remembered from her attendance at a national conference that every state school in the Carolinas provide a program for people with intellectual disabilities.

By creating new programs for individuals with intellectual and developmental diseases, new pathways will be available for many to succeed, according to Huebner.

“People who have intellectual and developmental disabilities at one point were just institutionalized and kind of put aside,” Huebner said. “Now, they have these great opportunities to go to college, and why wouldn’t we give them that opportunity to grow and gain all that things that we’ve gained through our college experience?”

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MHS from page 3 her counselor.

“She mostly listened and had me talk,” Emily recalled.

“It was nice to talk to someone who’s not involved in my situation and who doesn’t have stakes in anything.”

For the next two weeks between Emily’s first appointment and follow-up — which she had preemptively scheduled during her Access Appointment — her counselor recommended tracking her anxiety and other symptoms until they met again in two weeks.

“After hearing that appointments are limited, primarily for things like school stress, and that there’s no guarantee to even get the same counselor more than once, I was kind of discouraged from checking it out.”

Ellie Olson UW-Madison student

From her first time logging in to MyUHS to schedule a phone call to finally sitting down with a therapist, it took Emily a month to see someone.

Limited services UHS is open about the fact that their mental health services are limited. “If you need urgent, long-term, or specialized treatment, UHS may suggest an out-

side community provider,” their website reads.

MHS services are designed to be temporary, to get you in and out the door and to another mental health provider, if necessary.

And a lot of students have a problem with this system.

Erin Dubiel, a senior at UW-Madison, reached out to UHS for mental health services on seven occasions but was never satisfied with the services she was offered.

“Personally, l’d go to, like, one appointment, and that’s it. It’s literally been dependent on the issue,” she said. “Sometimes I’ll only do the phone call, and then just not follow through. If it’s more severe, then I’ll actually go in.”

Dubiel felt that, while MHS services are designed to address problems relating to wellbeing and academic productivity, the mental health professionals there are still unequipped to handle basic issues that relate to student life.

“For one of the appointments, I came in to talk to them and I was like, ‘Yeah, I think I have anxiety because I put a lot of stress on myself,’” she explained.

“And they were like, ‘Well, tell me about your childhood. How did your parents treat you? Did they ever pressure you into stuff ?’ They were looking for things that I wasn’t describing.”

Other students have been discouraged from using MHS services at all.

Ellie Olson, a freshman at UW-Madison, was initially interested in the program, but was quickly dissuaded from using their services.

“I was honestly really excited when I heard that there was free mental health care on

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campus,” she said. “But after hearing that appointments are limited, primarily for things like school stress, and that there’s no guarantee to even get the same counselor more than once, I was kind of discouraged from checking it out.”

“MHS services are designed to be temporary, to get you in and out the door and to another mental health provider, if necessary — and a lot of students have a problem with this system. ”

MHS offers different access to mental health services based on the student’s major and school. Students in the College of Engineering or the School of Medicine and Public Health have no limit on appointments and a shorter wait time.

However, the UHS policy is to offer up to 10 counseling sessions within a calendar year and up to 20 sessions total during the course of a student’s academic degree.

This policy, combined with the shortcomings of mental health care providers and long wait times, has left many students feeling that they’ve been left without counseling, without treatment and without options.

Action Project Issue, Fall 2019 Still feeling supported As students repeatedly raised concerns, the university tried to respond with changes to MHS. A recent hiring wave of additional providers was a response to the Student Services Finance Committee’s 2020 budget recommendations related to student mental health.

Fassbender shared that also learned the therapist she was seeing was new to MHS — and was hired partially due to her interest and passion in working with students who identify as part of the LGBTQ+ community.

Her counselor is one of the 13 new mental health providers that recently joined UHS this year, including providers with a focus on students of color, LGBTQ+ students and additional Spanishspeaking providers.

Other recommendations included the creation of a mental health task force, expanded hours to increase access to services, and additional physical space for MHS. Despite its limitations and complications, MHS has the potential to help students who need it.

“For me, it [has] been nice to talk to someone,” Emily said.

“The therapist has been super kind and patient and I feel like she’s very intuitive.”

During Fassbender’s second appointment, they discussed the mood-tracking she’d been assigned. At the next appointment, they’re planning to dig into things from her childhood, and in the meantime, Fassbender has some therapy work she can do on her own and steps to consider going forward.

While Fassbender had a positive experience with MHS,

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and recommends it to anyone experiencing similar issues, she noted some problems are better handled by the crisis hotline or outside community providers.

“I think, from what I’ve heard about the system, it’s more a matter of resourcing,” she said. “Even though there’s been more staff hired, it’s still just not enough to meet the volume of need at this university.”

“I think, from what I’ve heard about the system, it’s more a matter of resourcing ... Even though there’s been more staff hired, it’s still just not enough to meet the volume of need at this university.”

Emily Fassbender UW-Madison student

Fassbender decided to continue seeing her therapist here at UW-Madison until she graduates this spring, or at least use as many appointments as she’s allotted by UHS. “I know that not everyone has had as positive as experiences with therapists that they see, but I think that that could be helped by more resourcing at MHS to have more availability and options of people to see,” she said. “I think they’re definitely working on expanding the availability of those services, but more work definitely needs to be done.”

news

6 • Action Project Issue, Fall 2019

arts

dailycardinal.com/projects/disability • 7

INTERSECTION OF DISABILITY AND SEXUALITY Righting misrepresentation: Folx with disabilities can be romantic, sexual partners

By Allison Garfield CITY NEWS EDITOR

Sexuality is often overlooked and not taken into consideration for people with disabilities — Kirsten Schultz has experienced this firsthand.

Schultz is a genderfluid, pansexual Madison-based sex educator, writer and activist. They were diagnosed with Systemic Juvenile Idiopathic Arthritis in 1993, and have since tacked on fibromyalgia, psoriasis, patellofemoral arthralgia, anemia, scoliosis, asthma, posttraumatic stress disorder diagnoses, amongst others — all of which contribute to their chronic pain.

And every relationship they’ve had has been impacted by it, in small and big ways, Schultz said — from working to daily functions to how emotions are regulated and more.

Repercussions of missing representation For Schultz, communication is essential.

There’s more for partners to know when they are in a relationship with a person with a disability, according to Schultz, like levels of pain or energy, when positions may need to be changed or needing help tying a pair of shoes.

Because individuals might need assistance with tasks that are perceived as simple, like tying shoes, it can bring about feelings of shame.

“It can be hard to deal with the ever-changing notion of the relationship,” Schultz said via email. “Some days, partners may be equal. On other days, one might have to do more of the physical things while the other provides more emotional support.”

The shift from an equal partnership to having someone act as a caregiver is hard to overlook, Schultz elaborated. Add on the financial stress of dealing with medical appointments and an inability to work for periods of time, and it’s a lot for a couple to go through.

But working through those feelings can be difficult due to the absence of representation; historically, there has been a lack of education and discussion on disability and sexuality, and there remain few evidence-based studies in the field.

Lisa Yee, a local sex and relationship therapist, traced the history of silence on the subject back to U.S. colonial times.

“We don’t talk about it, don’t acknowledge it,” Yee said. “It’s like our puritanical beginnings in America: don’t talk about sex. And it’s a shame. Just because someone is disabled doesn’t mean that they don’t have sexual needs like any other human being, right?”

When Schultz noticed this lack of discussion around sex for people with chronic illnesses and disabilities — or the acknowledgment that this demographic had sex at all — they decided to change that.

In 2015, they began tweeting #ChronicSex. It spiraled into its own organization, breaking open the dialogue on how quality of life is affected by disability and chronic illness, specifically focusing on self-love, self-care, relationships, sexuality and sex itself.

Even before all the diagnoses, Schultz was interested in sex.

They had a stash of condoms in their locker throughout school and would go with people to Planned Parenthood to get testings. In middle school and high school, students would come to them to ask sex-related questions, Schultz said.

However, it took becoming a sex educator in 2015 for them to be able to accurately explain their experiences — and even request the right treatments from doctors.

“I started dealing with sexual issues as a part of my now-laundry list of diagnoses,” Schultz said. “My doctor didn’t know what to do with the pain I was having. It really came out of necessity for me.”

A learning opportunity for society Education on sexuality is not only important to folx with disabilities, though; it’s a potential source of growth for everybody, according to Mitchell Tepper, one of the leading sex educators and counselors in the nation.

There needs to be a societal attitudinal shift, he said.

“People are not seeing people with disabilities as potential partners and potential sexual partners,” Tepper said. “I think many people with disabilities have known what it’s like to be stuck in the friend-zone. It takes a lot of confidence to express that you don’t want to be there and that you don’t have to be there.”

Tepper’s work emphasizes helping both people with disabilities and health professionals grasp the full potential of sexual response and expression post-injury or illness. He himself has experienced chronic health issues, growing up with Crohn’s disease, and also physical disability — he lost the ability to walk after he broke his neck and sustained a spinal cord injury.

Fortunately, Tepper was able to find a silver lining. He stated that though folx with disabilities often take longer to hit romantic milestones — like first kiss and first intercourse — it can translate to more compassionate partnerships.

“When you’re forced to really learn and understand sexuality, you learn things that people never learned when they could just get by,” Tepper said. “Sometimes I say, ‘You don’t have to break your neck to learn how to be a great lover.’ You can, but you don’t have to — you could just learn from me.”

Jeff Chafin is a traumatic above-the-knee amputee who suffered severe abdominal injuries by way of a motorcycle accident.

After complications in the ICU, he had a five percent chance of survival. He beat those odds.

“They said I was swollen up like the marshmallow man,” Chaffin said in an email. “As I am sure you can imagine, I did not anticipate much of sex life.”

After months of rehabilitation and physical exploration, he experienced exactly what Tepper explained: a lot of friend-zoning.

“Women avoided me — as soon as they saw the wheelchair, it was like I could hear the snickers and the eye rolls,” Chaffin said. “When I would find someone that would at least talk to me, there would be nothing more beyond ‘Hi, Jeff,’ if we crossed paths.”

It can be damaging, according to Tepper and many concurrent studies, on micro and macro levels.

“When they’re looking for that connection with other people and they don’t have it, people [with disabilities] feel like they’re not worthy and capable,” Tepper stated. “They carry around this idea that this isn’t available for me.”

Dating online has pros and cons, according to both Schultz and Chaffin.

Schultz explained dating on apps can be particularly difficult for those who are visibly disabled, like those in wheelchairs. Many messages are “enraging” to Schultz, as they tend to be ableist, patronizing, invasive or all of the above.

Contrarily, Chaffin met his now-wife online after his accident.

“She didn’t seem to care about any of it,” he said. “She was in Michigan and came down for a week — it was the best week of my life. We eventually got married and had two kids!”

Educating sexuality Along with being overlooked as potential partners, folx with disabilities often get asked highly personal, invasive questions, according to Schultz. Sometimes mobility equipment, like a wheelchair or cane, is seen as an “invitation” to pry.

“I’ve been asked if my genitals work and if I do any work during sex or just lay there — even while waiting in line at an airport or to get coffee,” Schultz said. “There’s so much interest in the abilities we may or may not have during sex that the greater lack of conversation about sex and disability floors me.”

Schultz stated that some of this insensitivity can stem from media depictions of folx with disabilities: they’re portrayed as sexually inappropriate or as “the best friend,” there to lift people up by reminding them their lives aren’t as bad as others. The latter is called inspiration porn, coined by the late comedian, journalist and disability rights activist Stella Young.

“Disabled people aren’t a monolith,” Schultz said. “We’re [not] all asexual or all sexually promiscuous. Like any other marginalized group, we deserve to be depicted in the wide range of roles we play in daily life.”

So how do we make this change, to attitudes, culture and representation? Yee says it’s elementary — literally.

“It starts with educating our children differently about sex and not just how our bodies function, and about pleasure,” Yee said. “Sometimes it’s just a very biological thing, which is good but not enough.”

While University Health Services is not doing specific work in the field, they continually self-reflect on how they are — and are not — cultivating accessibility, culturally-informed services and advocacy in all their services, according to Jenna Wiedman, one of UHS’s mental health providers.

“We attempt to make adjustments as limitations are discovered,” Wiedman said. “There is still growth to be done to increase inclusion and representation of people with disabilities in general sexual education.”

Part of this is including topics of sexuality and consent in sexual education for people with and without disabilities at all ages,

Spotlight on sexuality: Media needs more exploration, accurate representation

Wiedman explained. But it also means accepting awkward situations as they arise.

“Perfectionism in sex doesn’t usually make things sexier,” Wiedman said. “Accepting and letting go of awkward moments will likely make sex more enjoyable.”

Schultz is hopeful thanks to sex educators and new generations entering the conversation. As a result, they said, society is really beginning to talk about what sexuality means.

“College students and younger folx are so much more in tune with questioning the world around them and finding ways to be who they want and need to be than I was a decade ago,” Schultz said. “The level of activism is growing and it makes me feel so much more comfortable to be who I am as a queer, genderfluid, disabled person.”

Sexuality, disability and community People with disabilities have challenged the perception of their sexualities for decades now.

Sex is not all about procreation; not all disabilities are inheritable; many in the disabled community accept their conditions and the possibility that they might be passed on.

For example, the Deaf community believes that deafness is a culture that should be celebrated, rather than an impairment, according to The Atlantic.

Tapping into emotional and erotic desires to organize against oppression is a recent notion explored by Adrienne Maree Brown in her novel, “Pleasure Activism: The Politics of Feeling Good.”

Maree Brown and various other authors examine in essays, reflections and poems how pleasure can help heal oppression.

“Reclaiming our full erotic aliveness is a core piece in recovering from acts of oppression and marginalization,” Brown said to ColorLines. “It helps so much to not be in your head going through the experience of being a survivor. It takes community to figure that stuff out.”

Chaffin echoed a similar sentiment.

“Looking back, I would say the hardest thing about being disabled and trying to have sex is simply finding ‘good’ people to surround yourself with,” Chaffin said. “As tough as it was [to] deal with, the chair weeded out a lot of shitty people in my life. I have met some great friends and I have an amazing wife and family that I would never trade in for anything.”

GRAPHIC BY MAX HOMSTAD

By Lauren Souza ARTS EDITOR

Disability, entertainment and sexuality has been a convoluted relationship not typically explored in mainstream media. There are many societal misconceptions of people with disabilities being seen as non-normative, other or deviant, which has shaped how sexuality of people with disabilities is seen as problematic under the public gaze.

Internationally famed multi-disciplinary performer Matt Fraser, most known for his role in “American Horror Story,” has made it his mission to explore this dynamic and break down the negative misconceptions revolving disability and sexuality.

“When you are disabled, the two things people think you can’t do are fight and have sex … so I’ve got a black belt and I’m really good at shagging. The physical pleasures in life are really important to me,” he said in a recent interview.

How do we shift away from constant negative images and portrayals of disability and sexuality depicted in entertainment that continue to dominate society’s attitudes? People with disabilities and allies have been campaigning for a long time to see change happen, but that does not mean it’s easy.

Tom Shakespeare — an academic with disabilities who authored “The Sexual Politics of Disability” — wrote, “I think images of disability and sexuality either tend to be absent — disabled people being presented as asexual — or else perverse and hypersexual.”

Lived history and media has exploited people with disabilities and their sexuality, suppressed or destroyed for non-disabled peoples’ entertainment. The intention is to set apart and differentiate bodies from abled or not.

The negative legends of theater From the classic era and onward, these metaphors and tropes have been woven into the very legends and literature presented on stage. Sexuality in relation to disability is portrayed frequently but in a negative light.

For example, the Greek myth of Hephaestus explains how he was born “shriveled of foot” and cast out of Olympus for this. He married the goddess Aphrodite but was unfaithful due to his “impairment.”

Even the novel “Lady Chatterley’s Lover” exposes the “Chatterley Syndrome” to show the stigma surrounding disability.

The “Chatterley Syndrome” discusses how a man with a disability is considered to have lost his sexual power, leaving the partner to find solace in someone else. Rather than condemn the act of extramartial affair, it fuels the assumption that people with disabilities are incapable of sexual relations. The asexual tripe limits men with disabilities to be impotent, unattrative and vulnerable to exploitation.

It leaves them open to mockery, being used solely for good joke material to ridicule deformities. It perpetuates this notion that people with disabilities should be shielded from sexual relationships or suppress their sexual desires under assumptions they cannot — or should not — seek out pleasure.

A common trope shown throughout William Shakespeare’s work is the idea that disability is a punishment stemming from sin and evil. Most prominent in his work is Richard III, who is viewed as an evil man, punished for committing sins and rendered impotent. He is written as twisted in body and mind — he’s “rudely stamped.”

This type of trope is paradoxical to say the least.

It describes disability as a retribution for his evilness yet he is shown as extremely powerful in his life, even though he is viewed as an unsuitable sexual partner.

The invisbility and oppression of sex lives of people with disabilities can have detrimental effects, contributing to low levels of sexual knowledge and inadeqaute sex education. It perpetuates the confusion of sexual identity, reduced self-esteem and self-doubt in embracing their sexual identity. Even on-screen portrayals of the sexual body are focused solely on bodies without disabilities and cater to a certain audience.

Film: “Cripping up” and representation Sex and disability has long been excluded from popular culture, representation being consistently omitted from the screen in favor of something society has deemed “normal.” The few instances of representation have been problematic or conforming for what the audience wishes to see.

More often than not, people with disabilities are represented by actors who do not have those disabilities. For instance, “The Theory of Everything” shows Eddie Redmayne in the role of Stephen Hawking, joining the long line of actors without the disabilities of the characters they portray — and literally walking away with an award.

Despite this problematic issue, the film does feature Redmayne’s character as capable of sex and jokes around about the topic. The notion that disability and sexuality is an “issue” continues the legacy of asexuality associated with people with disabilities.

“It’s simply really; for us the ‘issue’ is primarily the attitude of others. And it goes beyond an acknowledgement that we have a right to sexual experience. We know we do. But we fight … to have our views genuinely represented in all their forms, and expressed by our own creatives across all art and popular culture,” said Penny Pepper, poet and disability rights activist.

It’s no surprise that Hollywood still has a problem when it comes to representation, however there is little acknowledgment of the problematic casting of able-bodied actors in roles of characters with disabilities.The phenomenon is termed “cripping up.”

“Cripping up” is still widely accepted, while mainstream film has begun to distance itself from whitewashing stories. So, what is the actual difference between the two?

When the community with disabilities raises the issue, they are ignored or silenced.

The exclusion of accurate representation and dismantling of stereotypes is important. Furthering the absence of real people with disabilities on-screen perpetuates the stigma of otherness, as well as the presence of sexuality.

A controversial example is “The Shape of Water,” directed

by Guillermo del Toro, which follows the story of the mute Elisa (played by Sally Hawkins), and received thirteen nominations at the Academy Awards two years ago. Some critics are quick to show how there is a positive representation of disability and sexuality — Elisa is portrayed as independent and a sexual being.

However, Sally Hawkins is not mute.

Not only is that problematic but so is her attempt to depict

ASL (American Sign Language), which can be viewed as offensive towards people who have been signing since they were kids.

Despite the intention of diversifying and depicting underrepresented stories, filmmakers continue to cast and make production choices out of conformity and fear. Choosing to not work with actors with disabilities, they maintain within the realm of problematic mindsets and ingrained stereotypes.

The taboo of sex and disability in TV Compared to the world of Hollywood, television’s depiction of people with disabilities has come a long way. In the more recent years, there have been shows opening up the conversation revolving disability and stigma.

Don’t get me wrong, there are still many flaws with the recent shows that have come out, but some representation is better than no representation. While women and people of color have begun to have positions of power in the industry — whether that’s behind the camera or in front — there is still room for growth when it comes to individuals with disabilities.

Disability representation has gained more traction, especially on platforms like Netflix, which has more freedom and capability to have more equitable portrayals.

One show that has garnered lots of attraction for its portrayal of a gay man with cerebral palsy is “Special.” Based off of Ryan O’Connell’s memoir, O’Connell serves as the creator, producer and star of the show.

The series explores a semi-autobiographical version of himself, displaying the ups and downs of his life and what it’s like to hide both his disability and sexuality.

In an interview, O’Connell hopes to actually depict a sexual experience for a gay person with a disability and break down that barrier.

Not only does he work to destigmatize sex work, but also normalize gay sex for mainstream audiences.

“I hope they feel good that their sexuality is acknowledged. I feel like as disabled people, our private parts just get cut off — we’re like Ken dolls,” O’Connell said. “People don’t really acknowledge that we are sexual beings, and that we have our own wants and desires … So I hope that they feel good that that part of themselves is finally being recognized, and it’s not in a gross, infantilizing way — it’s treated with humanity and respect.”

There is still much to progress in terms of disability and sexuality in entertainment. Able-bodied people tend to categorize people with disabilities as either helpless or as “super-crips” — an idealized person with a disability who serves as inspiration.

Look ahead: Who can access the space?

The media’s influence on ableism and public perception of people with disabilities creates confusion around them being sexual individuals, which is contributed to a lack of representation and affirmation.

It’s almost like this “myth of control,” where people with disabilities can’t be powerful, sexy and in control. When discussing the sexuality and sex drive of a person with disabilties, ablebodied people are confused by this due to their deeply-rooted ignronant misconceptions and fear towards the topic.

The sexual politics of disability are ever-present. Yet, by taking a closer look at the sexual rights, identity and sexual expression of people with disabilities in media and entertainment, it works to dismantle the stigma and taboo around disability and sex.

By ensuring there is more representation and space for people with disabilities in all forms, they can claim their identities and place as sexual beings.

Distancing away from the problematic tropes of people with disabilities — asexual, perverse, hypersexual or punishment — enables there to be proper representation from the community.

It’s time for able-bodied people to stop taking space, but making space.

People with disabilities defy the damaging myths around sex and disrupt problematic norms of sexuality and sexual expression. Through accurate representation, they force us to think outside the box and Hollywood’s conforming view of sex.

There needs to be an exploration of the relationship between disability, entertainment and sexuality, but for folx with disabilities like Pepper, it’s important to remember who is being represented and leading the conversation.

“Nothing about us, without us,” Pepper said.

arts

8 • Action Project Issue, Fall 2019

dailycardinal.com/projects/disability

Upstaging the Stigma of mental illness

By Sam Jones OPINION EDITOR

One artist jolts across the floor, thrusting their limbs as an extension of the staccato bursting through the speakers. Another voice crackles, rumbling along as their distress and frustration escapes their lips as spoken word — another sings, another drums, one after the other.

Publicly confronting your invisible illness — depression’s everpresent tenebrosity, chronic pain’s constant coercion, the uncontrollable ebbs and flows of bipolar disorder, or the itch-you-can’t-scratch nature of schizophrenia, to name a few — is unfathomably daunting. Openly professing your inner discourse, the demons keeping you up at night, may feel muddled or incoherent even to those not experiencing the same reality you live in.

Yet, with a gentle push and constant assurance from organizations like Upstage Stigma, the battle against oneself and their mental illnesses doesn’t have to be so draining or so arduous.

The brainchild of community member, UW-Madison alum and social worker Emily Erwin-Frank, Upstage Stigma aims to put a face — or faces, rather — to mental illness and its impacts on Madisonians from varying walks of life.

Founded in the wake of the 2016 election, this organization orchestrates riveting performances across Dane County where artists can discuss their emotional struggles through spoken word, song, dance and other creative avenues.

As founder and artistic director, Erwin-Frank has been forced to reconsider her own role in the organization, as well as more generally among the community.

SAM JONES/THE DAILY CARDINAL

Elena Hight performs a half-sung, half-spoken word ode to their late uncle for the audience at Upstage Stigma.

At their most recent show hosted by the Black Earth Library, eight performers dove into what it means to live with mental illness, either through their own diagnosis, rockbottom moments or the loss of family members due to inner warfare.

“It’s a unique and effective way, I think, to show people that you’re not alone,” Erwin-Frank said.

A spoken word piece analyzing the dichotomy of depression and anxiety — a metaphorical pair of the devil and angel on your shoulder that you can’t quite differentiate — by Katy Briggs opened the show, concluding that recovery isn’t necessarily about recovery, but rather discovery.

Alexander McMiller followed, offering an intensive dive into the mind of someone who is schizoaffective — a disorder that frequently entails the unpredictability of mood

disorders and hallucinations of schizophrenia. McMiller presented a trade-off between truth and deception as it pertained to his previous delusions, those of demons and dark power and discussion of whether it is more or less comforting to know that they are simply that — fragments of his disorder.

Despite their own internal battles, each perfo rmer’s set heavily touched on the human condition — and what it means to be an empath as someone with a mental illness.

Circe Johnson tackled this headon with a poetry piece inquiring morality as it pertains to wealth, childhood as it shapes our expectations (or lack thereof) of those surrounding us, and the stark experience of being the weird kid.

Upstage then jumped into the bounding dance performance by Kooy Buie — precisely entitled “Yin

and Yang” — delving into juxtaposition of the turbulence of emotional struggle. Futuristic, yet raw and faultlessly mortal, with an abrupt switch from agonizing murk to hopeful radiance, Buie shined.

Particularly reflective of this was a half-sung, half-spoken work by Elena Hight, detailing the life and death of their uncle. It was clear that Hight consistently feels the weight of the world, their abraded vocals and soft strumming positioning them to tell the woes of losing someone — someone seemingly out-ofreach, a victim of miscommunication and misunderstanding.

After a brief intermission, Melody Waring shared her visceral experience with chronic pain, particularly as it intersects with their depression; simultaneously earning the title of a demon and companion.

Songs of Manyen said. loss, love

and forgiveness by Molly Krochalk were to follow, as well as a harrowing poetic jaunt by Asias Johnson recounting the aftermath of a toxic relationship, and its closeness to childhood lacerations.

Concluding the evening was Verge Manyen, a Library Mall regular and percussionist who found peace within his art.

In treatment, Manyen didn’t fold — he started a band and found a family within the drummer community.

“You’re not living until you’re loving. Sometimes you just need to take the armor off, and that’s what drumming has done for me,” Manyen said.

Erwin-Frank is fully aware that love — not vengeance or cynicism — is at the root of these shows, and is enlivened by its community and its potential to expand through listening to one another.

“There needs to be a genuine curiosity of what each other has to say, there has to be this appreciation that you will only grow yourself if you can be there for someone else’s experience,” Erwin-Frank said.

“You will grow the most by talking to somebody who is different from you, and there’s an inherent contradiction that’s really beautiful. You see how we’re all the same.”

Upstage Stigma’s next show will be on Jan. 11 at the Madison Public Library’s central location. Beyond shocking compassion, beautiful art and communal vulnerability, however, don’t expect much.

“Every show has its own personality,” Erwin-Frank said.

“And you don’t fully know what it is until it happens.”

To read the full article, please visit dailycardinal.com

Literature as a mirror: Representing disability in fiction

By Raynee Hamilton LITERATURE COLUMNIST

The stories that we hear shape how we see the world.

Since childhood, we have looked to literature as a source of identification. We associate ourselves with characters that we read about, and these associations shape our assumptions and beliefs about ourselves.

In an ideal world, literature would accurately reflect the demographics of our society.

However, as most of us have probably recognized, this is not the case. The majority of literary figures are white, cisgendered, straight, often male and of able body and mind. This leaves many demographics of people underrepresented in the literature they read, which has insidious and often overlooked effects on their view of themselves and their place in the world.

One of the most vastly underrepresented groups are those with disabilities. Over 56 million Americans are living with a disability — representing nearly 19 percent of the civilian population.

However, this population is rarely ever portrayed in literature.

And when they are, the narrative surrounding them is often harmful.

Disability activist and author Kenny Fries has created a set of questions to test the representation

of disability in literature. The Fries test asks, “Does a work have more than one disabled character? Do the disabled characters have their own narrative purpose other than the education and profit of a nondisabled character? Is the character’s disability not eradicated either by curing or killing?”

It seems we should be able to name thousands of works that pass the Fries test due to the prevalence of disability in America. However, when novelist Nicola Griffiths compiled a list of all of the books that pass the Fries test, she found a total of only 67 books.

Author Marianne Ryan, who has a disability, writes that when people with disabilities are represented in literature they, more often than not, “serve as merely the means to an end, a perpetuation of ableist thinking that construes and objectifies people with deformity or disability as inherently pitiable, powerless, defeated.”

One popular example of this harmful narrative is the book “Me Before You,” which was later turned into a popular movie. It follows the life of Louisa Clark, who is tasked with caring for a quadripeligic man, Will Traynor.

Throughout the novel, the two slowly develop a romantic relationship. Will, however, cannot bear to live as a quadripeligic and seeks out

assisted suicide, leaving Louisa a sizeable inheritance. This narrative presents disability as something irreconcilable with happiness, and treats the death of a main character as a cathartic ending.

“Searching the cultural landscape for references and role models, it’s not easy to find many women simply living their lives while disabled,” Ryan states.

This is the complicated truth of disability representation in literature. People with disabilities are either completely erased from the narrative, or they are seen exclusively as something to be cured and pitied.

Disability activists such as Ryan and Fries are fighting for the normalization of disability — a literary character with a disability should also be able to have a rich personal and public life, and not be solely defined by their disability.

Ryan goes on to describe the unique challenges facing the representation of women with disabilities, people of color and queer people. She quotes Griffiths, stating, “You only seem to be allowed one degree from the norm. If the norm is straight white rich boys, then you can be a woman, you can be queer, you can be crippled, but you can’t be all those things.”

Representation is incredibly important for people who

GRAPHIC BY JULIA MENDELSOHN

Underrepresentation in literature causes a shortage of positive role models for people with disabilities, affecting society’s view of disability. are outside the norm because it allows them to create an identity for themselves in an environment that so often ignores their exis-

tence. When it comes to disability representation in literature, it is clear that we need to redefine that norm.

sports

dailycardinal.com/projects/disability

Action Project Issue, Fall 2019 • 9

Lack of coverage hurts folx with disabilities

KALLI ANDERSON/THE DAILY CARDINAL

The Adapted Fitness program and its volunteers at UW-Madison helps people with all types of physical disabilities recover lost mobility. The program has been helping folx for nearly 30 years.

By Nathan Denzin SPORTS EDITOR

Snow is falling and the temperature is dropping rapidly — winter has come. Volleyball, spikeball and other summer sports are giving way to skiing and snowboarding.

Beaches will be abandoned for ski hills, and tracks will be replaced for basketball courts while people of all abilities look for new ways to exercise and stay healthy.

But it isn’t easy for everybody to switch sports and stay active.

People with disabilities that struggle staying active during the summer face even more difficulties during the winter. Snow and ice covering the sidewalks make it far more difficult to walk, and the cold temperatures keep most inside.

According to the Centers for Disease Control and Prevention, over 40 million Americans have a physical disability. Staying active is nearly impossible without some form of coaching, training or equipment for many of these adults, however very little is done nationwide to help those with disabilities get — and stay — active.

Nicole Ver Kuilen has been an amputee since she was 10 years old, after a battle with bone cancer took her left leg. She has seen what she calls a “lack of care” play out in her own life time after time.

Ver Kuilen is a self-described athlete who loved spending time outside before cancer changed her life, but said she didn’t want that to change after her amputation.

However, she quickly learned that living the active life she had before would be nearly impossible.

“That summer I lost my leg, the biggest thing I wanted to do was play in the water with my friends, but I was shocked to realize that the prosthetic that they had provided for me wasn’t waterproof,” she said.

The leg that can’t be taken in the water is the only one covered

by Ver Kuilen’s insurance, which meant if she wanted to play in the water with her friends, it could cost her family as much as $20,000.

“It’s like deciding if my child is going to college, or do we get

them a car or do we get them a limb,” she said.

If you are a person with a lower-body physical disability — and you don’t have an extra $20,000 laying around — you’d be forced to use the insurance-covered walking prosthesis to exercise, which is exactly what Ver Kuilen did. She found there were consequences for exercising with the walking prosthesis though, as it

“It’s like deciding if my child is going to college, or if we get them a car, or if we get them a limb.”

Nicole Ver Kuilen Founder Forrest Stump

would constantly break, or leave her with painful sores on her leg.

“I started experiencing a lot of debilitating overcompensation on the right side of my body after runs,” she said. “My knees, hip and back started breaking down.

I was in physical therapy twice a week, just in constant pain.”

The walking leg caused her body to run differently, which led to bones being pushed out of place along with debilitating pain, but paying $20,000 for a running leg was still an impossible task for Van Kuilen.

Insurance companies deemed a running leg for her a “luxury item” and “not medically necessary,” even while her walking leg re-shaped her body.

Ver Kuilen’s story of being dismissed and ignored by the healthcare industry is just one of many that some people with disabilities have experienced.

Mark Graser is a retiree who suffers from cerebral ataxia, a disease which attacks the cerebellum and destroys muscle coordination. As the disease progressed, he fell off multiple ladders at his workplace, which led to tears in both his knees as well as the removal of both his ACLs

and MCLs. Graser was let go from his job, and was labeled as physically disabled by doctors shortly thereafter. All of a sudden, his life had been thrown in flux — he could no longer walk without falling and had no energy.

Health professionals at the hospital helped Graser get active and use his legs, but once he was sent home with just a wheelchair, he had no idea what to do.

The rehabilitation process was long and difficult, with very little help from his doctors and trainers. “[Doctors] had me go to the Princeton Club, and they fit you into general population and expect that you know what to do,” Graser said. “They got all this equipment … but I don’t know how to use it. They’d ask, ‘Well, what do you want to work on?’ I have no idea.”

Graser could barely stand — let alone exercise — but he was told repeatedly to stroll into the Princeton Club and “work out” without help, in order to gain strength back in his knees.

“I had no experience with what to do or how I was going to do it. A dismal depression over if I was going to be able to [walk] began to set in,” he said.

Losing a limb is something no person should have to deal with alone, however, there seems to be a pattern of the health industry of “discriminating against people with disabilities,” according to Ver Kuilen.

The physical and mental conditions Ver Kuilen and Graser face could be addressed by insurance companies through comprehensive care for people with disabilities.

The American government is already providing this coverage to veterans through the VA, along with Medicare and Medicaid offering comprehensive care for those with physical disabilities. Yet, those companies often see prosthetic limbs or training on how to walk postinjury as non-essential.

There are people advocating for folx with disabilities so that those norms in the healthcare industry are changed. One of

those people is Ver Kuilen, who founded the non-profit Forrest Stump two years ago in hopes of changing the perception of those with disabilities.

“I’m an amputee for the rest of my life, so it felt like I needed to do something, I needed to take action,” she said.

“One voice is enough to change the status quo.”

Ver Kuilen completed a 1,500mile triathlon from Seattle to San Diego with her walking leg to show that amputees are just as capable, but the policies and restrictions preventing her from having a running leg makes things like the hike more challenging.

She was able to eventually make it through the journey, and completed a documentary highlighting the difficulties she faced.

Graser is fighting the status quo in his own way. He found the Adapted Fitness program at the UW-Madison, where he now works out weekly.

The program is run by Tim Gattenby, a long-time member of the university’s kinesiology department, and it focuses on

“All my life I was hearing people say ‘You can’t do that’, but here was a group of people telling me, ‘You can, why not?”

Mark Grasser Client Adapted Fitness

recovering lost mobility in people with disabilities.

Student volunteers and trained physical trainers work together with clients who have a disability, working out together for an hour at a time, two or three times a week. The program has been helping people with disabilities for years, and interest for similarly designed programs is beginning to appear across the country.

When Graser joined, he was barely able to use his legs. Now,

just a few years later Graser is more focused on breaking his friends’ lifting records than he is concentrating on walking.

“I believe that a lot of people with disabilities have their hope taken from them when people in the medical profession say, ‘Get used to the fact that your disability has these typical characteristics,’ and it’s going to be this way,” Gattenby said.

Because he sees a lack of proper care in the medical field, Gattenby decided to make his own program to help build people with disabilities back up.

The Adapted Fitness program was able to send Graser to Colorado just over a year ago, where he learned how to ski for the first time.

“It’s still the screensaver on my phone. The whole experience changed me, all my life I was hearing people say ‘You can’t do that,’ ‘You can’t walk’ or ‘You can’t climb,’” Graser said. “But here was a group of people telling me, ‘You can ski, why not?’ and it changed my whole perception, I was so motivated by it.”

Ver Kuilen met lawmakers in 2018 to discuss disability laws and has been working with grassroots activists to pass insurance fairness legislation in 21 states. The bill would eliminate prosthetic discrimination in private insurance, making sure that everyone in America will get the same level of care Medicaid and Medicare provide after becoming physically disabled.

“The legislation requires that private insurance cover prosthetics at the same level as Medicare and Medicaid,” Ver Kuilen said.

“And that they’re not allowed to get around any loopholes or provide any lower levels of care.”

Efforts to pass the bill in every state are ongoing, and something that Ver Kuilen and Forrest Stump have been working on for years.

However, for the millions of people living with a disability in states that haven’t passed the bill, getting that critical exercise we all need is still extremely difficult, and not getting easier any time soon.

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F

or college students, the effects of non-apparent disabilities — like depression, anxiety, ADHD, autism and other health related illnesses — transcend simply managing symptoms.

Not only are their symptoms invisible, but they face extra — and often overlooked — social and academic challenges that interfere with the “traditional” college experience.

Students with non-apparent disabilities are subject to social struggles even before arriving on campus.

Morgan Stieber, a freshman who experiences chronic headaches and migraines, recounts her difficulties finding a roommate.

“It took me such a long time to find someone who was willing to work with me in the way that I needed to minimize the triggers in our room,” Stieber said. “Even now, it’s hard to bring up the subject because I worry that it’ll be too much, and it’ll put unnecessary strain on our relationship.”

Outside of roommate relationships, students with non-apparent disabilities are burdened with consistently explaining why they cannot participate in activities that many prescribe as things “all Badgers do” — whether that be attending football games or drinking at bars.

“Something I’ve chosen to do is not drink alcohol, and a lot of that is due to having ADHD because it predisposes me to being more affected by alcohol,” said David Sauceda, a UW-Madison sophomore. “It definitely has an effect on how I interact with my peers.”

Peers, and even long-term

friends of students with disabilities, seemingly expect an explanation for everything they view as “deviating from the norm.”

Classes should be designed through the lens of students with diagnosed and undiagnosed disabilities.

“Sometimes I need to use a handicap parking pass to get around campus, and when people find out they ask, ‘Why do you have a pass? You look fine,’” said Kate*, a graduate student with POTS, a heart condition that is often characterized by fainting.

Jordan Hart, a sophomore who has major depressive disorder and generalized anxiety disorder, added, “When I had to go back to class after testing in a separate room, and I had to explain to my friends where I was during the test. I felt embarrassed,” Hart said.

Hart, Sauceda and many other students are subject to social encounters that can feel more like interrogations than friendships: they face fatigue, exhaustion and isolation not only from their symptoms, but from society’s expectation that people need to explain their accommodations if they do not have a physical disability.

“A lot of campus culture, and society in general, doesn’t really empathize with what survi-

vors go through and deal with.

[Professors and other students] feel the need to get justification … to feel sympathy,” said Saja Abu Hakmeh, the chair of PAVE and someone who works with students who struggle with depression, anxiety and PTSD. Academically, students with non-apparent disabilities often face non-apparent challenges that peers, professors and the university fail to recognize.

Mandatory attendance and participation policies, for example, can have a detrimental effect on students’ grades.

Flare-ups in disabilities are part of what makes it a challenge for students with non-apparent disabilities to remain present during lectures or class discussions, damaging their participation grades.

“I have an extreme sensitivity to fragrances, and some days I have no choice but to sit in lecture or discussion with someone who is wearing some sort of perfume … and I can’t focus in class,” Stieber said.

In Kate’s experience as a STEM major, strict attendance policies made making up labs a difficult task.

“Mandatory attendance policies were really hard for me as an undergrad,” Kate said.

Kate was frequently hospitalized in order to treat flare-ups as an undergraduate. Those visits happened to be during two exams for one of her physics courses — and since the physics department does not offer any make-up exams, she had to drop the class.

Clearly, students with nonapparent disabilities are being harmed by several rigid class and university policies.

Missed classes and reduced participation are often out of the control of students with disabili-

ties, so mandatory attendance and participation policies disproportionately affect those scholars.

Consequently, professors should be more flexible when designing their grading system.

While the university claims they are focused on mental health and are striving to provide accommodation for students with nonapparent disabilities, their efforts do not always include all students.

McBurney can be a great resource, but students with a pending official diagnosis from a medical professional lack the support it is capable of providing.

Julia Wagner, a third-year transfer student who has autism, spoke about the need for all students to receive accommodations if they need them.

“I think it’s a pretty simple solution … what I think McBurney should do is start working with students, start helping them right away,” Wagner said.

Even without specialized training, professors should be proactive in reaching out to students, as it can be difficult for some students with disabilities to ask for what they need.

In essence, while students work toward receiving an official diagnosis through UHS or another medical health provider, McBurney could offer students a trial run of receiving accommodations.

“They can still have students jump through the hoops that McBurney is required to have them do,” Wagner said. “But in the meantime [of receiving an official

beyond visible page 10

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Policies such as mandatory attendance may be discriminatory against those with depression, anxiety, or other non-apparent disabilities.

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Action Project Issue, Fall 2019

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Correction, not incarceration of children view

Cardinal View editorials represent The Daily Cardinal’s organizational opinion. Each editorial is crafted independent of news coverage.

The criminalization of people with disabilities, people of color and people of color with disabilities are some of the most heinous examples of systemic discrimination. Mass incarceration of these marginalized, and often underprivileged, populations funnels thousands into a broken system characterized by intolerance and abuse.

This phenomenon has become an increasingly devastating issue for youth in particular. Moreover, youth with disabilities and of color are disproportionately affected by policing and disciplinary practices in schools.

Zero-tolerance policies, police presence and overall neglect push them out of schools and into the juvenile system — effectively reinforcing the school-toprison pipeline.

Even here in Madison, the disproportionate effects of school policing are exhibited at Madison Metropolitan School District high schools. According to the Madison Police Department, 390 citations were issued to 335 individuals over the course of three academic years, starting from 2015 to 2018.

The top five offenses included truancy, disorderly conduct, unlawful trespasses, battery and casual possession of cannabis. Of these offenses, students aged 14

to 17 made up the largest majority, while African-American students made up 68 to 77 percent of issued citations.

While this specific report did not include information on students with disabilities, it is common knowledge that these folx are largely affected by policing practices in schools.

According to the National Council on Disability, studies show that up to 85 percent of youth in juvenile centers are those with disabilities, with a disproportionate number being youth of color. From learning disabilities to mental health issues to physical disabilities, students who do not fit institutional views of who can be educated become disenfranchised from the system.

Present throughout the state, and not just in Madison, the intense policing and harsh disciplinary practices toward these marginalized students lead to a greater likelihood they will become looped into the criminal justice system.

The presence of police further exacerbates the school-to-prison pipeline. We have been forced to live in a world where children’s lives are guided by the existence of cops in schools, instead of counselors or social workers.

The presence of school resource

officers (SROs) creates a hostile environment in which being disciplined becomes equivalent to being arrested.

Often justified for ensuring safety or maximizing learning outcomes, police presence on school grounds ignores the brutal reality people of color in this country experience — one of complete and utter fear in the presence of law enforcement.

And to extend this to children is frankly absurd. In a setting where students should become informed citizens, pursue their passions and form relationships, they are instead subject to constant unease and fear of being arrested for what seem to be trivial reasons.

There are thousands of children of color and with disabilities who deserve to be in the classroom, who deserve a chance at a life of endless opportunity — not one restricted behind bars.

Draconian school policies that essentially stifle the livelihoods of disabled students and students of color must come to an end. Students — children — should be educated, not incarcerated for minor infractions.

The state’s largest public school district, Milwaukee

Public Schools, further exemplifies this perpetuated reality within our state.

In the 2013-’14 academic year alone, 91 percent of students with disabilities were restrained or put in seclusion, while only accounting for 20 percent of enrollment in the school district.

In just this one district, students with disabilities are found to be suspended at a rate of one in five, while those without disabilities are suspended at half that rate — one in ten.

Similarly, black students within the Milwaukee School District are expelled 100 times more than their white counterparts. They are also overrepresented at nearly 85 percent of referrals to law enforcement, while only accounting for 55 percent of the total student population. Such statistics alone make it abundantly clear that students of color with disabilities are very likely to face compounding discrimination.

Though data isn’t widely available on this population in Wisconsin alone, national statistics show that one in five Black, Native American and multiracial boys with disabilities receive a suspension compared to only one in ten white boys with disabilities.

Rather than providing counseling services or extra educational assistance to students with disabilities, especially those of color, they are instead ostracized from the education they are entitled to.

In order to ensure a prosperous future, we must invest in our youth; yet, when subsets of this population are deemed

unworthy, continuously pushed out and criminalized without a second-thought, white hegemony is only further perpetuated.

It is vital for Wisconsin to mitigate the school-to-prison pipeline that is ever-present in our state.

Local cities, state government and non-governmental organizations must combat the stigma against disabilities and special education that schools reinforce through segregation and sub-par curricula.

Specialized education is important, but it must be done in an inclusive manner for both the educational sufficiency and well-being of these marginalized students.

School policing must also come to an end — there should never be cops in schools. Rather, these personnel must be replaced with counselors, behavioral specialists and restorative justice coordinators.

Misbehavior must be understood and corrected rather than penalized without explanation.

This is especially a call to action to teachers themselves, for they know their students better than any SRO or administrator.

By training and supporting our teachers to more strategically approach disciplinary situations, they can help curb the school-to-prison pipeline by helping to keep children of color with disabilities in school.

Education and safety are not merely for white able-bodied students. There are thousands of children of color and with disabilities who deserve to be in the classroom, who deserve a chance at a life of endless opportunity — not one restricted behind bars.

beyond visible from page 10 diagnosis] students shouldn’t lack the support they need.”

Furthermore, getting the official diagnosis required for a McBurney Visa is not as straightforward as many assume — some students lack the insurance needed to get a diagnosis, while others have had traumatic experiences in therapy and are unable to return to a therapist to receive proper documentation of a mental health condition.

While McBurney can be accommodating of many students with non-apparent disabilities, there are several others who do not receive those benefits. Professors need to shift their focus from accommodation to inclusion. Classes should be designed through the lens of students with diagnosed and undiagnosed disabilities.

In addition to eliminating mandatory attendance and verbal participation policies, professors can include practices as simple as starting classes with brain warmups and providing Google Surveys for students to ask questions without having to draw attention to themselves during class.

Mandatory training for professors to learn more about how various disabilities — apparent or not — would result in these more inclusive classes and policies, which could begin to fill in for where accommodations fall short. “[Mental illnesses] affect everyone differently, but professors should understand how students’ experiences can vary,” Abu Hakmeh said.

Even without specialized train- conversations with the very stu- want them to ask me. I don’t *An asterisk indicates that the ing, professors must be proactive in dents this university may claim to — want them to make assump- student interviewed wishes to reaching out to students, as it can but, as spoken to above, still largely tions,” Kate said. “Having a gen- keep their identity private, and be difficult for some students with do not — include. eral openness to help and be a pseudonym is used in place of disabilities to ask for what they need.

“If people have questions, I inclusive is huge.” their real name.

Many of the aforementioned solutions were suggested by students with nonapparent disabilities.

And while the university should be listening to those students when constructing policies, students with invisible disabilities should not be burdened by both their symptoms and the construction of class policies.

“It can be hard to assess who needs accommodations,” Hart explained, “A welcoming, forward-thinking approach [by professors] can help.”

It is through a deeper understanding, and by simply having empathy, that our professors can make classrooms more accessible and inclusive for all students.

This underGRAPHIC BY SAMANTHA NESOVANOVIC standing can begin For folx with non-apparent disabilities or illnesses, it can oftentimes feel as though one needs to justify their being. through one-on-one

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Action Project Issue, Fall 2019 dailycardinal.com/projects/disability

Trying to survive: A day in the life of college student with Type 1 diabetes

By Megan Girod STAFF WRITER

“I have Type 1 diabetes.”

A frequently-repeated statement in my life since I was diagnosed in 2014. My pancreas stopped producing insulin and now I take insulin every single day, at every single meal, for every single thing I put in my body.

I take insulin to control my blood sugars. Whether they are high from food, stress, hormones or lack of sleep or when they’re too low, and I ironically need to eat sugar to bring them to a safe level.

Too much or too little insulin could kill me. It makes life a little more interesting when every single thing I do affects my chances of survival.

Luckily, I have an insulin pump and a continuous glucose monitor.

They take away the daily annoyance of shots and finger pricks, but life isn’t a walk in the park just because I have new technology. I still deal with ignorant comments from people who don’t know any better, judgment for constantly stuffing my face with random foods and severe sleep loss.

Common misconceptions “You don’t look diabetic,” may be one of my least favorite comments to get. My typical response is a sigh and an eye roll, and then I carry on with my day. Other times I respond with a quick “well, what exactly does a diabetic look like?,” often answered with an uncomfortable silence.

Diabetics, type 1 or type 2, don’t have a specific “look” that distinguishes them from anybody else.

Only because of perpetuated stereotypes, people believe that diabetics are overweight, unathletic and simply didn’t take care of themselves, and that is the reason their body decided to retaliate against them.

Nobody would walk up to someone with breast cancer and say “well if you just took care of yourself, this wouldn’t have happened,” but they think it’s okay to say this to diabetics.

I have received this comment far too many times in the short five years I have been living with this disease.

Almost every time I hear it tears begin to swell and I become infuriated all at once.

A part of me does blame myself for my diabetes, maybe if I hadn’t eaten so much ice cream as a kid this wouldn’t have happened. But at the end of the day, I, nor anybody else with Type 1 diabetes, asked for or did this to themselves. To say otherwise is incredibly hurtful and wrong.

People don’t seem to realize their stares and side commentary about the medical contraption on my body or curious looks wondering if there is something wrong with me hurt a lot. Worst of all are the “she brought it on herself” and other ignorant comments that are just wrong.

These comments cut deeper than almost anything else that could be said to me. They hurt me, they hurt my parents and these types of comments hurt the diabetic community

I am so grateful to have support me.

Dealing with Type 1 isn’t a joke, just like any other chronic illness isn’t a joke. Unfortunately, people like to make fun of diabetes because they don’t seem to take it as seriously as it really is.

Day-to-day diabetes One constant thing about living with diabetes are the random foods I’ve had to eat when I didn’t want to, just to survive the night. Yes, this sounds dramatic, but on more than one occasion I have woken up to somebody shaking me awake because my sugars were so low I couldn’t hear my alarms screaming at me.

I have hours and hours worth of time I do not remember because my blood sugars have dropped to an incredibly unsafe level and my brain stopped functioning properly. People tend to stare when I pull out random bags of candy at any given time.

Another important aspect of my day is the lack of sleep that I get on a daily basis. Let’s face it, college students don’t get enough sleep as it is.

But what about diabetic college students?

Unfortunately, diabetes doesn’t really care that I haven’t gotten an undisrupted eight hours of sleep since 2014. It doesn’t care that I have had a long day and have another long one tomorrow. It doesn’t care that I am physically and emotionally exhausted, that I just want one good night’s sleep for myself and my parents.

I joke around, saying “Here I am going low instead of going to bed.” But that is a cruel reality I and millions of others face on a nightly basis. There is an incredible amount of anxiety towards going to sleep because we risk not waking up in the morning.

If my sugars drop to an unsafe level, anywhere below 70 mg/dL, my Dexcom alarms start to go off.

But think about your alarm clock, do you always wake up? What if your brain wasn’t functioning at full capacity and you’ve slipped into a deeper sleep?

Then begin the phone calls, the frantic texts from my parents trying to make sure that I am okay, that their child will wake up in the morning.

My alarm clock rings in the morning and I want to cry, I am always tired.

People say “why don’t you just take a nap, give yourself a break?”

I can’t take a break. Diabetes doesn’t take breaks. So, at 2, 3, 4 a.m. when I have to be up at 7 a.m. for class, I will be awake texting my parents to let them know that I am okay, that I will wake up in the morning and I will carry on with this disease regardless of how many times I want to give up.

Being a “normal student” Being on one of the largest party campuses in the country is a whirlwind college experience. It is so fun and exciting but also comes with issues I never thought

I would deal with.

I deal with the reality that peo- GRAPHIC BY LYRA EVANS ple don’t invite me to parties because I don’t drink anyway.

Most people assume I don’t drink because of religion or personal preference but in reality, diabetes dictates this aspect of my life too.

Drinking goes from fun to dangerous very quickly for diabetics. Our bodies start functioning differently, our kidneys go to processing the alcohol out of our systems rather than toward helping keep our blood sugars high enough.

There are carbs in alcohol that have to be covered with insulin for, but what if I don’t finish my drink?

What if I pass out because my sugars are too low but people just assume I drank too much? Being on a large college campus is great until you have to accommodate the dangers of a hefty drinking culture.

So, if you have friends that don’t drink for whatever reason, invite them anyways. They might not drink but that doesn’t mean they can’t be included in the fun.

Looking the part What’s wrong with your leg?

What’s that lump on your arm? Why do you have a

bump on your stomach?

T h e s e questions seem harmless but are still incredibly personal and rather hurtful. Just because I have a random appliance on my body doesn’t mean that it should be pointed out, usually in a disrespectful way.

I know not every person is meaning to be rude, they are simply curious about the weird bumps.

But, as a person who struggles with self-confidence enough as it is, having my appliances pointed out makes it even worse.

Everyone wants to fit in, find their place and their friends on campus.

We all want to look good and be comfortable in our own skin. Being self-conscious is not only limited to having a chronic disease, it’s had by many. Take a moment to imagine how that feeling is intensified when I have to be extra conscious of it by having medical machinery on my body all the time.

I choose my clothing based on where my pump and glucose monitor is. For prom, I chose dresses with appliques on one side or the other to hide my pump more than a plain dress would have. I work with little kids over the summer and they did not like how “boring” my grey insulin pumps were, so, I have started to paint my insulin pumps because it makes them prettier.

I don’t think my kids understood what their opinions meant. I never thought about painting my pumps until they suggested it.

They gave me ideas every week for what I should paint on my pumps

and it gave me a little more confidence to not hide my pumps, but to instead show them off. Unfortunately, some people don’t care if they are painted or not, they will still ask what is wrong with me and why do I have to wear these things.

I want to curl up and hide under baggy clothing so people can’t see my appliances. I start to think about how weird and unattractive I must look with all of these things hanging off of me. I think about the people who stare, the parents who pull their kids away from me when they see my pump as if I am contagious with some horrible disease.

I don’t usually think about my pumps or my glucose monitor until someone points it out. Then, that is all I can think about — how ugly it is to have this disease. That, because of diabetes, I will never be the pretty girl, I will only ever be the diabetic girl.

How to manage everyday life Luckily, UW-Madison’s campus has the McBurney Center that is incredibly helpful in setting up accommodations, especially for those of us that may need a random 15-minute break to eat some Skittles.

I have accommodations through McBurney so, in the event of low blood sugar, an event that prevents my brain and body from functioning properly, I can have time added onto the testing period.

Regardless of these written accommodations between McBurney Center, myself and the university, there are still professors and TAs that fail to understand why I need them.

“You can’t eat in here,” the instructor glares at me while I munch away on some Skittles as my glucose monitor reads ‘LOW.’ This ultimately results in a backand-forth discussion that goes on too long and thus produces an intense testing situation. Professors and TAs just sign off on accommodations and few of them actually read what they are. They have too much to worry about to focus on yet another kid with accommodations but this unfortunately, leads to a lot of miscommunication and hurt feelings.

Just remember...

A day-in-the-life of a girl with diabetes involves lots of tears, pure exhaustion, incredibly supportive friends and family and blessings that I am able to survive each and every day.

There is a saying in our diabetes community, “I have diabetes, diabetes doesn’t have me.” I try to remind myself that I am a girl with diabetes, not a diabetic.

Diabetes affects every single aspect of my life, even the little things like deciding what type of food I want to eat. At the end of the day, I live my life as normally as possible given the circumstances. I still play club sports, I work out, I even ran my first half marathon a few weeks ago. I participate in life as much as I can because I know how precarious life with diabetes really is.