Communicating Your Choice


Most of the time Tiffany Ostrom and her boss at the Metropolitan Center for Independent Living (MCIL) were on the same page during their meetings that peppered her first weeks working at the center.

When the two weren’t in agreement, though, she never hesitated to tell him her opinion through a combination of speaking, spelling, American Sign Language, and her personal care assistant, who helps her communicate because of her cerebral palsy.

Ostrom is the new independent living coordinator at MCIL, and her main job is to launch their new, 10-week civic engagement program at the end of March. The program is open to those with disabilities and the parents of those with disabilities, and it includes modules on leadership and coalition organizing developed by the University of Kansas. There are also several weeks of one-to-one sessions to help participants “dive deeper” into the curriculum and to guide them as they take their first concrete steps to find a community leadership opportunity that they are interested in. To prepare for the class series, Ostrom has been working on making PowerPoints based on the material and has been developing discussion questions and activities.

“I always wanted to work with people with disabilities,” Ostrom said. “I feel like I have a lot to offer with my personal experiences and my education”—the education, which, incidentally, she got so she could be more qualified to help people in the community.

As she and her personal care assistant sit together in her office, Ostrom alternates between looking at the thick stack of papers in front of her and what the care assistant is typing. Soon she will be getting a key guard so that she can type—it essentially puts each key at the bottom of a mini hole so they have to be specifically pressed down and won’t be affected by accidental swipes of the hand—and her husband is building a modification sized just right for her. MCIL has been very accommodating; besides the key guard, other resources to help her do her job efficiently, and, on the comfort side of things, a fan in case the office gets too warm.

During the actual class, Ostrom’s care assistant will do the initial talking, reading off of a script that Ostrom will create, and Ostrom will interject or expand as necessary. It’s faster that way, and Ostrom acknowledges that.

But that was Ostrom’s choice. She has dealt with years of people trying to make decisions for her. Before she got her master’s of social work at the University of Minnesota in 2014, she had enrolled in the vocational rehabilitation program at the University of Wisconsin – Stout. The school was pressuring her to use an augmentative and alternative communication device, which left her feeling like the process was slower and more impersonal.

“She fought tooth and nail to make sure that nobody else would have to endure what she endured at that school,” her husband George said. “Although most people would have been done pursuing higher education after the emotional trauma caused by that sort of situation, it only served to motivate Tiff.”

Ostrom is well-acquainted with that burning desire to achieve her goals—besides getting her master’s, she traveled to intensive therapy sessions in Poland so that she could walk across the stage to get her degree at her high school graduation. She marched into the office of her high school athletic director to present her case about why she qualified for the varsity swim team even though she used flotation devices. Her parents laid the example of advocacy for her when they argued with her elementary school principal that she should be allowed to stay at her current school instead of going to a school an hour away that was specifically for students with disabilities. It wasn’t because the other school was bad, but Ostrom had the intellect to stay at her current school and knew it would give her more of a challenge than the other one.

“Although great strides have been made through the independent living movement, societal rigid thinking continues to exist regarding people with disabilities,” Ostrom said. “Overall, many people don’t understand that there are enough independent living supports that enable people with disabilities to live where and how they desire.”

Ostrom understands the pitfalls that parents and teachers sometimes fall prey to when they work with youth with disabilities, and she has the experiences and education to give valuable advice and insights.

Those who know Ostrom best are consistently in awe of her achievements, her poise, and her outlook on life—always positive.  To Kara Cardenas, one of her care assistants, Ostrom exudes a love for life and people; she always enjoys trying new things, supporting those she loves, or meeting new people—even if they sometimes assume she can’t talk and only speak to her care assistant and even if when they do talk to Ostrom, it can take them a bit to get her style of communication down.

“Sometimes a simple sentence can take several minutes for someone who is just learning to understand,” Cardenas said. “I know I would become frustrated and angry quickly if it was such an effort to communicate while Tiffany is able to do this with patience, grace and humor. She often laughs and jokes when people misunderstand her and she makes people feel very comfortable as they learn her speech.”

Ostrom protests such praise. Yet as she moves down her hallway at work for lunch, she greets everyone she sees with a big smile, stepping in to say a longer hello to one of her coworkers and politely reminding her that, yes, her service dog is on duty even though he seems eager to reciprocate the coworker’s attention.

As the weeks go by in Ostrom’s civic engagement class, she and the participants will also doubtlessly get to know each other. While the majority of the prep work will be done before the class begins, she plans on making herself available to meet outside of the classes for those who are looking for resources, advice, encouragement, or who just want to talk, all possibilities falling into Ostrom’s goals of helping others.

“I would say it’s [the job is] the perfect fit right now,” Ostrom said. But who knows what will come next? “I’ve always wanted to work with children with disabilities so maybe in the future.” As those who know Ostrom say, if she puts her mind to it, she’ll do it.