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To Be Seen in the Fullness of Our Lives

'Look Me In the Eye' after seven years
Nicholas Kaasa

 

On a hot July afternoon, 23-year-old Nicholas Kaasa travels down Broadway in his power wheelchair. The chair is a machine to behold, tank-like, with three gray wheels on each side. It’s outfitted with headlights and red circular taillights, along with orange hazard lights that flash when needed.

With the push of a button, Kaasa can go vertical: A hydraulic seat lift raises him half a foot from the chair’s base. On the left side is attached a black leather, metal-studded saddlebag of the kind more often found on a Harley; it has a Seattle Seahawks logo and silver letters that spell "ICK." “I should probably find that ‘N,’” Kaasa says.

Kaasa — who has cerebral palsy and vision impairment — cannot walk and uses the wheelchair to get around. When I ask him how fast it can go, he responds: “You want to check that?” And then he’s gone, shooting down the sidewalk at warp speed. His answer when I catch up: “Fast.”

 “In Germany, it’s street legal,” Kaasa adds with a smirk.

For all its awesomeness, the wheelchair does have its problems. Sometimes it breaks down; sometimes the battery doesn’t charge. But Kaasa’s biggest complaint is that when people see him, they tend only to notice the chair and the disability it accommodates. They only see how his left arm curls just slightly against his body, how his legs are held tight with black pads. They don’t really notice Kaasa, a big guy with a big personality whose nickname is “The House,” a play on his last name.

Kaasa works as a community outreach advocate at Full Access, a Eugene nonprofit serving people with disabilities, and it’s easy to see how he connects with others. He speaks like he’s in a hurry, his mouth trying to keep up with his brain. He’s a toastmaster member and quick with a comeback.

In his free time, Kaasa likes to write poetry. He has a thin black moustache and a wisp of a goatee. A tattoo of a bald eagle swooping down on a rainbow trout adorns his left upper arm, a tribute to his grandfathers. He’s got vague plans for a full sleeve on his right arm, maybe a skeleton hand creeping down. He’s not sure yet.

Kaasa is trying to educate the public as part of “Look Me in the Eye,” a Eugene-based disability awareness campaign now in its seventh year. Made up of clients and advocates from Full Access and Oregon Supported Living Program (OSLP), a nonprofit residential, vocational and supported living program with an emphasis on arts, the campaign aims to develop relationships between people with disabilities and others using the seemingly simplest of acts: eye contact.

Back on Broadway, Kaasa rolls past a little boy whose eyes settle on him, look away, flit back and look away again. A homeless man cuddling a dog on the sidewalk gives Kaasa a friendly nod. As Kaasa rolls into the Barn Light on Willamette, the barista welcomes him and asks what he’d like. Kaasa gets his drink and clicks into a high-top table. “They need more of these kinds of tables,” he says.

His trip from Charnelton Street to that table has gone surprisingly smooth, but often for Kaasa and other people with disabilities, being out in public is a charged situation. It’s only a matter of time before someone makes it awkward and uncomfortable.

Kaasa, like anyone with a disability, has his war stories. One time when he was downtown, a man asked if Kaasa would trade him his chair for a burrito. Sometimes people try to pray over him. Other people are well-intentioned but obnoxious, saying: “Must be fun riding around in that chair all day!”

Once, at a café, a woman put a dollar in his wheelchair’s cup holder, thinking he was begging for money. Kaasa laughs. “I’m in this $40,000 chair, but can you give me a dollar?”

Most often, service people will ask his able-bodied friend what Kaasa wants, assuming he cannot speak for himself. Or they speak to him as if he were a child: A waitress at Olive Garden took his friend’s order normally, but when she got to Kaasa, she bent down and made her voice Mickey-Mouse high: “What … would you-ooo … like to-day?!” Kaasa, without hesitation, squeaked back: “I … would like … the lasagnaaaa!” 

But the most common microaggression is how people look at him, or don’t. He says they either stare or pretend he’s not even there. “People with disabilities may use a chair, but it’s people first,” he says. “People are just seeing the chair.”

Kaasa definitely wants you to notice the rest of him, and it starts with looking him in the eye.

 

Gretchen Dubie

Broken Limb of Discomfort

 According to Gretchen Dubie, executive director of OSLP, Look Me in the Eye began in 2009, when OSLP and Full Access were trying to raise money for an elevator (they share a building). Amelia Abel, a woman with Down syndrome, was speaking before members of the Lions Club when a man stood up and admitted to being uncomfortable around people with disabilities. He said, “I don’t know where to begin with people like you.” Abel responded, “Well, you can start by looking me in the eye.” 

Dubie knew right away the phrase “had legs,” she says, and started working with employees and activists at both agencies to develop a fully fledged awareness campaign complete with a compelling eye-and-heart logo, television and social media commercials, school and community presentations, and lots of swag (T-shirts, wrist bands and even temporary tattoos).

The phrase has served as a rallying cry for the hundreds of people served by Full Access and OSLP. Since its inception, the campaign has been met with a solid community response. September has received official proclamation as “Look Me in the Eye” month by several cities, including Springfield all the way down to Roseburg and Coos Bay, though Eugene is the only city to proclaim it for all of 2016. The activists would like to spread the campaign not just around Oregon, but also around the country.

Seven years in, the aim of the campaign remains the same: to combat that discomfort first mentioned during Abel’s Lions Club talk. 

Amelia Abel

 

“What we have discovered is that people are uncomfortable, and with their own discomfort comes awkward interactions,” Dubie says. Such awkwardness includes avoidant behavior like ignoring the person or aggressive behavior like insisting on opening a door. And the awkwardness is not just for the able-bodied person trying to interact, but also for the disabled person. 

“It’s closing people [with disabilities] off to wanting to educate or advocate or even interact with the community,” Dubie says. “It’s a two-way limb of discomfort and it just snaps in the middle of one interaction.” 

Dubie says that it’s OK to ask questions like, “What happened to you? Can you hear me OK? Do you want me to hold the door for you?” Those social interactions start, she says, by making eye contact. “That’s the starting point to interpersonal relationships,” she says. 

She is quick to point out that some people with disabilities don’t like to be looked at in the eye, such as people on the autism spectrum. It is more about the quality of attention, Dubie says.

April Wick

 

But can just the simple act of eye contact change the way people interact with disabled individuals? April Wick, executive director of Full Access who also has spina bifida and uses a wheelchair, says she believes looking someone in the eye can be a powerful political act. “If you are a student with a disability and your teacher is dismissing you or you are feeling broken and like no one is paying attention to you, you can assert: I am a human being. I want you to look at me. I want you to see me.” 

Looking at someone in the eye, particularly someone with a disability, is the beginning of truly seeing the rest of them. “We want to be seen in the fullness of our lives the way we see ourselves,” Wick says. 

 

Creating a Vulnerable Community

A large part of the Look Me in the Eye campaign has been getting the message out to students. Kaasa has been presenting in front of school assemblies since before the campaign started. He usually speaks with another disability activist, accompanied by former KEZI news anchor Rick Dancer, whose brother-in-law is a client of OSLP. 

Dancer helps facilitate a conversation between Kaasa and the students. The activists share their stories of living with a disability and how it feels to be marginalized by others, which is followed by a freewheeling Q&A session. The presentation is built on radical honesty. The students can open up and ask questions they’d be afraid to ask otherwise.

Kaasa does about six presentations a year, but would like to do more.

One of the goals of these presentations is obvious: to educate students about what it’s like to live with a disability. A few years ago, when Kaasa spoke in front of Debbie Roberts-Sorg’s students at Laurel Elementary School in Junction City, he activated his wheelchair seat-elevator. “Nick raises up in his wheelchair and they became instantly quiet,” Roberts-Sorg says. “You could hear a pin drop with 250 kids in the auditorium.” 

She says the presentation changed her students, making them more open to people who are different than them. They learned, she says, that “these are people. They aren’t something else.”

Kaasa also remembers what it was like to be a student at Sheldon High School, and he says his personal goal is to show that students with disabilities have a voice. He has presented for the students of his old special education teacher, Edane Chism, communicating how to use the concept of Look Me in the Eye to self-advocate. 

But the Look Me in the Eye message also has pleasant unintended consequences for the greater student body. “You think you will teach them to see students with disabilities,” Kaasa says, “but it’s basically helping the school see the rest of their classmates. It turns into this whole giant movement of ‘people are people and they need to be treated as such.’”

Dancer says that something powerful happens when people with disabilities share their stories: It creates a community of vulnerable people. Once, he says, when they were presenting at Kelly Middle School for more than 600 kids, a boy grabbed the mic and said people picked on him, calling him a “fag.” The boy asked his school: “Can we please stop this?” 

Kids then passed around the mic, admitting to being picked on for being too smart, too little, too fat, too stupid. “They found a way through our community of disability to talk to each other,” Dancer says. “When you bring in someone with a disability, they are vulnerable, and the kids are allowed to be vulnerable and not afraid. It’s one of the most powerful things you’ll ever see. This community of disability brings out these hidden stories.”

Phacelia Cramer, now a sophomore at Williams College in Massachusetts, started a Look Me in the Eye club at South Eugene High School to facilitate social interactions between mainstream and special education students. Cramer, whose younger sister has an intellectual disability, noticed how students in special education classrooms were isolated. She started a once-a-week lunch group based on the campaign’s ideas.

“You could see how it visibly changed [students’] attitudes about coming to school,” Cramer says, with special education students high-fiving mainstream students in the hallways. The club has since spread to Sheldon High School, where her sister is a student.

 

Empowering Self-Advocates

Ultimately, the lasting effect of the Look Me in the Eye campaign may be in helping people with disabilities become self-advocates. In late August, I attended the organization’s advisory board meeting, where Kaasa and other activists associated with OSLP and Full Access meet to discuss the events they had planned for September, which included a “Honk if you like ‘Look Me in the Eye’” campaign Sept 21. Activists clustered on well-trafficked street corners around Eugene and Springfield with signs to raise awareness.

“Just be rowdy,” Dubie says. “The corner that gets the most honks wins.”

September was a big month that also included a “Look Me in the Eye” art show at the now closed Alexi Era Gallery and a presentation to state representatives and Eugene mayor-elect Lucy Vinis. Local television stations also aired a new Look Me in the Eye television commercial.

Sherlyn Dendy's 'Lady Portrait on Yellow' was part of the Look Me in the Eye art show

 

Dancer, who owns a media production company, was there with his cameraman getting all the angles. He recorded the activists as they sat in chairs and wheelchairs, coloring signs that say things such as “Honk for Respect.” Dancer asked them what Look Me in the Eye means to them with their responses to be edited later into segments and sound bites.

Lisa Sansevere was at the meeting here with her husband, George Floyd, both of whom have an intellectual disability. Wearing her Look Me in the Eye T-shirt, she says into the camera: “We should be treated with respect and dignity,” adding that having a disability doesn’t mean you can’t do something. “We can, we will, watch us. We are not mistakes around here. I am part of something and I belong.”

Vicki Anderson

 

Another activist, Vicki Anderson, who has spina bifida and schizophrenia, and uses a wheelchair, faces the camera. She wears large glasses and a floppy straw hat, half-covering two long purple braids. Later, when I interview her, she calls herself “the rowdy one” and says the Look Me in the Eye campaign is empowering. Ansderson used to be ashamed of her disability, she says, but now just wants to change people’s attitudes and how they act towards her. 

With the camera on her, she says that the campaign means “standing up for what we want, saying things from our point of view, and not being made fun of.” She grimaces and peers into the camera.

Anderson means business. She’s looking at you, Eugene. She says, “Look me in the eye.”

People interested in getting involved can go to lookmeintheeye.org for more information.