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?You wouldn't tell someone in a wheelchair to walk'

Ripon Commonwealth Press - 5/17/2017

Rachel Stanley specialized in studying stigma while at Ripon College.

Much of her research focused on attitudes surrounding autism, but she knows from first-hand experience that health stigmas go beyond autism, and even mental health.

The newly minted Ripon alum, who graduated Sunday along with her 2017 cohort, uses a powered wheelchair to navigate longer stretches while getting by with a cane for shorter distances.

Although she sat through Sunday's commencement in her wheelchair, she crossed the stage to receive her degree with her cane in hand.

Stanley deals with several chronic illnesses (a list she matter-of-factly rattles off: "dysautonomia," "postural orthostatic tachycardia syndrome," "inappropriate sinus tachycardia") which affect her heart rate and nervous system, among other symptoms.

But the fact that these health impediments are "physical" rather than "mental" has not prevented her from hearing a rebuke too often heard by those with mental illnesses: "Why can't you just get over it?"

"People don't actually accept and accommodate as much as you'd think," Stanley said. "People say, ?You wouldn't tell someone in a wheelchair to walk.' No, they [actually] do that ...

"I think it's a well-meaning comparison [between physical and mental health], trying to get people to take mental health more seriously, but when you compare it to physical health, we don't actually take physical health as seriously as you might think."

She believes the sticking point might lie in attitudes toward chronic, ongoing health complications rather than temporary ones that eventually get resolved.

"[That's] possibly why there's a lot of stigma for mental health, because mental health isn't temporary," Stanley said.

Due to the seemingly never-ending support necessary for people with chronic health issues, physical or mental, she noted that caring for people like her "can be draining," which leads to frustration and exhaustion.

NEURODIVERSITY, DISABILITIES AND SOCIAL EXPECTATIONS

Even so, her study of autism and personal experiences with people who are autistic has led her to see the condition as an issue of neurodiversity or neurodivergence rather than illness.

Meaning, brains that function differently than expected aren't necessarily "ill" but simply might be thought of as "different."

Stanley noted that while studying mistreatment of people with autism, the word "weird" comes up "countless times" in surveys about attitudes towards those she might consider neurodivergent.

She thinks this is another stigma that attaches to autism.

"One of, I think, the main issues is that people still view autism as something like a disease and something very scary and awful," Stanley said.

Separating mental differences from diseases - as well as short-term illnesses from longterm disabilities - and granting "reasonable accommodations" for those differences and disabilities can go a long way to reducing stigmas, she believes.

Illness, like the occasional nausea Stanley experiences, are not generally accommodated for, but accommodations are made for a disability, such as her fatigue, alleviated by virtue of her wheelchair.

But what is considered a disability and what isn't is as much a product of societal expectations than anything else, Stanley asserted.

For example, eyeglasses are accommodated almost unquestioningly throughout society, she explained, and therefore not really considered a disability.

Meanwhile, people might be classified as "disabled" because they have to take an elevator rather than the stairs, but if a society expected its members to travel floors by climbing a rope or ladder, "a lot more people would be considered disabled," Stanley pointed out, adding that "disability is very socially defined."

REFRAMING BRAIN FUNCTIONS

Stanley designed one of her majors, disability justice, to align with her passion for activism on behalf of people with disabilities, mental and physical, and helped found a group at Ripon College last spring to facilitate some of that activism locally.

The organization, DREAM (Disability Rights, Education and Activism Network), is intended to expand understanding about disability issues in hopes of erasing some of the stigmas Stanley has been studying.

The group is comprised of students who deal with autism, anxiety, depression, ADHD and other conditions that can affect many aspects of their lives, including their ability to focus, plan or just get out of bed in the morning.

"We have the irony that most of our executive board struggles with executive function, so trying to organize things can be fun," Stanley said.

After being home-schooled until her senior year of high school, her interest in autism and similar brain functions was sparked in college, while at the same time her younger brother was diagnosed as autistic.

Stanley knows she herself has some autistic tendencies, including a sensitivity to noise.

Framing labels such as autism and ADHD - which she calls an "autistic cousin" - as spectra of brain function rather than disorders can help in two ways, according to Stanley.

Not only can reframing destigmatize the labels, but it also can help people who wouldn't otherwise view themselves as autistic or attention-deficit better understand the way their minds work.

"Instead of treating [autism or other mental health issues] as a scary disease or disorder, approaching it as, ?Hey, I know sometimes you have troubles with certain things, like everybody does; let me know what I can do to help for that,' but not assuming that everything that they experience is awful and terrible," she said.

COPING WITH ISSUES

For herself, it's been helpful to know and accept limitations while also seeking accommodations she deems "reasonable."

Although she avoids concerts, Stanley once attended a Fall Out Boy performance - with earplugs - saying it was the "only band I'd go to a concert for," and she probably wouldn't do it again.

Sometimes she needs to leave restaurants that are too noisy, even being brought to tears on some occasions. And sometimes she asks if an establishment can lower its music volume, which usually is non-controversial.

In school, Stanley explained, "I kind of taught myself coping mechanisms" which help smooth over any learning difficulties.

She would try to sit at the front of class, use a laptop for note-taking since gripping a pen for too long pains her hand and take extra time to work through math problems she knew she could do - just not as quickly as others might.

Stanley also feels lucky to have attended Ripon College.

"My other main choice was UW-Madison, and I've now realized that would have been an awful choice," she said.

Here, she appreciated the college's small class sizes, intimate campus, close connections with professors and tight-knit community, which eased struggles she might have had.

"All the people at Ripon have been really supportive," Stanley said, adding that she "wouldn't have been able to manage college" without her partner, Doragon Blair.

CREATIVE WRITING

While psychology and disability activism were her focus while on campus, Stanley also excelled at writing, winning the Associated Colleges of the Midwest's 2017 Nick Adams Short Story Prize for her story, "Four Times Jasper Diallo Didn't Die (and One Time He Lived)."

"I've been doing creative writing - I can actually legitimately say - since I learned to hold a pencil because I have a little notebook of a story I wrote about Winnie the Pooh; and judging by the handwriting, I'd just learned to write," she said.

Initially, Stanley didn't think the prize-winning story, which she described as "an urban fantasy about a queer, mentally ill witch," would resonate with a lot of people, but Professor Megan Gannon encouraged her to submit the piece for consideration.

"I do credit [Gannon] with me actually starting to write again," Stanley said, explaining she hadn't written creatively in about three years.

Despite the break, art and writing are important ventures for her, as they allow her to explore experiences she may be limited from herself.

LOOKING AHEAD

Now that Ripon's behind her, Stanley will focus on the fall, when she enters a doctoral program in clinical psychology at Marquette University, where she'll receive a fully funded fellowship and living stipend.

That will include working with the Marquette Autism Project, headed by Professor Amy Vaughn van Hecke.

Stanley hopes to study therapy for sensory problems, which she said "nobody's researching" because it affects the children actually dealing with issues like autism and not their parents' lives.

Most autism research has focused on causes, she said, and on behavioral therapy that enables adults with autism to learn how to manage behavior but not so much their interior experiences.

Besides a desire to expand autism research, Stanley will carry with her the concepts of neurodiversity that she came to understand and appreciate at Ripon.

So, a warning to stigmas, health-related or not: Stanley's coming for you.

 
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