Rhena Ripley is just like any “normal” student at the University of Wisconsin – Milwaukee. She enjoys spending time with friends, volunteering, drinking coffee, and exploring the city. She is a social work major and has very detailed plans for her future.
She’s also physically disabled and has been confined to a wheelchair since age one.
Because of Rhena’s condition, she struggles with constraints brought on not just by her immobility, but, she says, also by the university.
Rhena feels like UWM is not handicapped accessible. She struggles with transportation, snowfall, and moving around construction.
But she’s not giving up. Rhena has big dreams for her future: She wants to help others like her.
“I need people behind me,” she said. “I need the school behind me.”
Rhena has an incredible support system of family, care workers, and friends around her, helping her every step of the way. Now, she needs the campus with her.
Students with different disabilities including deaf and blind students, students with learning and mental disabilities, and students like Rhena, attend UW-Milwaukee each year. Rhena feels that UWM is not a well-equipped campus for mobile disabilities.
Rhena was born on Feb. 11, 1994 in the tiny town of Price City, Utah.
“There’s a K-Mart and a Taco Bell there. That’s it,” she says, while chuckling.
Her parents Jodi and Tom loved spending time with their 1-year-old bundle of joy, who would roll around and crawl to her heart’s content. Then one day, she stopped moving.
She just stopped.
Rhena was diagnosed with Spinal Muscular Atrophy type 2 (SMA2) when she was just 16-months-old.
SMA is a motor neuron disease that affects the way the body controls muscle movement. Essentially, her muscles are slowly deteriorating over time. The disease affects 1 in every 10,000 babies and 1 in every 50 Americans are genetic carriers, according to CureSMA.org.
Soon after her diagnosis, Rhena received her first motorized wheelchair. It was pink and had Barbie designs on it.
Her parents raised Rhena to be independent. If she needed something, Rhena would get it. Still, they have been completely supportive of her condition and accommodate her needs.
But, SMA comes with many struggles.
Rhena is unable to move almost all of her muscles. She is completely dependent on others to help her with everyday activities: Showering, going to the bathroom, getting dressed, even sleeping. A care worker needs to be with her every night in order to turn and reposition her.
Recently, Milwaukee has been receiving an impressive amount of snowfall. Like every other student, Rhena wishes that classes would be cancelled when the snow really starts to hit. But not for the usual reasons. It’s a bit easier as campus warms up, as it is starting to do now.
But in the winter, Rhena knows that the curbsides will most likely not be shoveled.
The week of Feb. 2, she was not able to attend any of her classes until the curbsides were completely cleared off, meaning no ice or snowfall covers where the sidewalk meets the street.
They weren’t until the end of the week.
Her motorized wheelchair can only operate on flat surfaces or else she will fall out of it. In addition, the cold weather is also hard on her muscles and makes her weaker.
Being in a wheelchair, Rhena faces difficulties like this every day, but she refuses to give up.
Freshman year of college at UWM, Rhena had a tough time. She fell out of her wheelchair twice and had issues with the campus elevators that would occasionally break. That same year, a worker did not show up for Rhena’s night shift, and she was left in fetal position until 3 p.m. the next day.
“If I can’t even get out of bed in the morning, it’s not worth it,” Rhena said.
Rhena considered transferring. UW-Whitewater is known for having excellent accommodations for students with mobile disabilities, she says, but she didn’t want her disease to decide her future.
“I should be able to go where I want,” she said.
Rhena decided to change whatever was making her miserable her freshman year and return to UWM.
Connections on campus
She joined campus sorority Gamma Phi Beta fall of 2014, which has given her incredible opportunities to meet new people and explore new things. She also started volunteering at St. John’s on the Lake to help dementia patients. At home, she volunteers at a crisis hotline.
Rhena eventually wants to work at a children’s hospital and then as a vocational rehabilitation counselor servicing people with job training and resources. She’s building her resume now to help reach her goals.
In addition to keeping busy, Rhena has about 12 care workers and two roommates who work throughout the day with her.
“My care workers are my family. I care so deeply for them,” Rhena said.
Anna Nacker, a psychology major at UWM, has known Rhena for about a year. She worked as one of her care workers.
“I help with showering, dressing, sleeping, comforting, loving,” Nacker said with a grin.
Rhena has made significant strides to make her time at UWM a good one over the last few months, but her struggle isn’t over yet.
The Accessibility Resource Center (ARC) is the campus office for student accessibility and disabilities. They offer students opportunities like note-takers, sign-language translators, and alternative testing options.
For students with mobile disabilities, the options they are given through the ARC are limited to alternative testing times, extensions, and locations, as stated by their website.
If there is something additional the students need that ARC is unable to provide, they try as much as possible to make referrals to the appropriate department, according to Jason Anderson, ARC counselor.
It’s difficult for students with disabilities everywhere to get all the resources they need to be just like any other student. For Rhena, her biggest struggle on campus is transportation means.
Not only is winter hard for Rhena’s condition, it’s also hard for her ability to get just about anywhere on and around campus.
The UWM Campus Housing Shuttles and student taxi-like service BOSS (Be on the Safe Side) are two major transportation options that students take advantage of at the university.
BOSS is not handicap accessible.
The shuttles are, but according to Rhena’s personal experience, it takes too long to get her wheelchair onto the bus and secured. The last time she took the shuttle, it took over 15 minutes for her wheelchair to be properly strapped in.
Rhena hasn’t just let these things slide. She has contacted the university on many occasions asking for action to be taken, as have other disabled students on campus.
In November of 2013, prominent lawyer and student at UWM Alan Eisenberg addressed UWM’s Transportation Subcommittee about handicap accessibility in relation to parking on campus.
Eisenberg said that parking for handicapped students is unsafe and expensive.
Head of Facilities Planning and Management, Geoff Hurtado, verbally promised Eisenberg an improvement in the handicapped parking system at UWM, but the committee made no immediate action at that time. Members of the Transportation Committee at UWM did not return requests for comment for this story.
The 1990 Americans with Disabilities Act (ADA) safeguards equal opportunity for people with disabilities in employment, public accommodations, commercial facilities, transportation, and State services and forbids discrimination, according to their website.
As stated in Subpart D of the Accessibility clause ADA, “no qualified individual with a disability shall, because a public entity’s facilities are inaccessible to or unusable by individuals with disabilities, be excluded from participation in, or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any public entity.”
But, Rhena has been excluded from participation in class because of building constructions and has been denied the transportation benefits other students have through BOSS.
Living life fully
Rhena recently celebrated her 21st birthday.
One of her roommates and psychology student, Nichole Elsner, said that Rhena celebrated, and celebrated hard.
“She kept winking at people,” Elsner remarked.
Rhena lives life to the fullest every day; she laughs and makes fun of herself constantly. She’s open about her condition, but she doesn’t want people to know her for her disease.
Rhena wants people to know her for her, and she plans on keeping her voice heard loudly about her disability.
“I am like everyone else, and I want to be treated that way,” Rhena said. “But I really wish someone could be in my spot for just a week, just to see how hard it is.”