 Opening the World's Eyes: Brookline Blind Couple Share Personal Experience to Improve Accessibility, Help Others Understand Disabilities.
By Lesley Mahoney, Staff Writer
Kurt Kuss reads the name that the student had written in Braille during and Understanding Disabilities lesson at the Lincoln School in March.
Kurt Kuss may be able to lay claim to the most unusual opening line. Hey, you're in my bibliography, he said to Barbara Ceconi in the summer of 1996 when they met while enrolled in a resident guide dog program in New York.
Indeed, while completing his master's degree in social work earlier that year, Kuss referenced a paper Ceconi authored on therapy with a blind clinician.
It was serendipity, Kuss says of their meeting almost a decade ago. We have a lot of lifelong experiences that are very similar and we pretty much hit it off right away.
Both Kuss and Ceconi lost their sight to Type I diabetes—Ceconi at 19 and Kuss at 29; while Ceconi has no sight, Kuss is legally blind (he likens his sight to being able to see through Cellophane).
After completion of the guide dog school, Kuss took a job on a psychiatric ward in a hospital outside of Chicago and Ceconi went back to Brookline. But the two reunited for good not long after. I decided I needed to be with her, Kuss, 43, said. She is absolutely my best friend
Photo of Barbara Ceconi and Kurt Kuss at work with staff from the Museum of Science during a meeting about the upcoming "Star Wars" exhibit.
The Parkman Street couple married in 1998 and have since channeled their disability into educating others not only on issues surrounding visual impairment, but on those centered around universal access and diversity.
The pair run Access Umbrella, an accessibility and diversity consulting firm that provides training on disability awareness and sensitivity; principles of universal design; and policy development for corporations and cultural institutions.
Ceconi, who, like Kuss, holds a master's degree in social work, was inspired in large part to form the business as a result of the roadblocks she came up against trying to land a job in her field. I would go on job interviews, and people would want to know how I could get around, not about my skills and qualifications, she said.
Ceconi, who is in her 40s, took that experience and decided to volunteer in the early 1990s as an exhibit interpreter at the Museum of Science under the direction of Betty Davidson, a pioneer in Universal Design—a concept that gears the design of products and environments to all individuals (not only those with disabilities). An exhibit, for example, that is created with principles of universal design, will be accessible to just about anybody, regardless of someone's interest or ability—both physical and cognitive—or age or ethnicity, explained Davidson, who met Ceconi when the two were neighbors on Beal Street. You don't look at it and say this had been adapted to blind people.
Subsequently, Ceconi sat on a committee at the museum that dealt with accommodation issues.
Ultimately, Ceconi branched out and began consulting to tother museums in the area, planting the seeds for Access Umbrella. The company started doing business in 1993 and incorporated in 1999.
When Kuss arrived in Brookline, he delved into the organization as well.
Barbara and Kurt are perfect examples of advocates for universal design, Davidson said. They are people who have put it all together. Because of their experience in museum work, they are well versed in the concept of universal design. And given their own experience with disabilities, they can also translate the concept to staff training.
Now, the business boasts local clients such as the Fleet Center, the Museum of Science, the Museum of Fine Arts, Boston and the Children's Museum. Other clients include the Opera Company of Philadelphia, Disney World and the Smithsonian Institution.
They have recently been working with Scholastic Entertainment on the development of a character for a children's animated series set to air in the fall on PBS and have worked on several "Clifford" episodes. Kuss and Ceconi have also worked with Nickelodeon.
In addiction to working with corporate, cultural and educational institutions on issues of disability awareness and principles of universal design, Access Umbrella also provides staff training.
If you train people to work in a position with people who have disabilities, they're going to treat everyone better who comes through the door, Kuss said.
Everyone on the planet adapts to who they are, Kuss said. It's getting people to realize people with disabilities are not unlike them they just adapt to life differently.
In addition to Access Umbrella, Ceconi and Kuss have also parlayed their disability into teaching students in the Brookline Public Schools about what it's like to be visually impaired. They participate in "Understanding Disabilities," a program initiated in Rhode Island in the late 1970s by a special needs teacher and parent of students with special needs. The program offers units on visual and hearing impairments, as well as physical disabilities.
Through the program, students get to experience different types of blindness, such as light perception and tunnel vision. Ceconi and Kuss also teach students about Braille.
Our hope is to communicate that we're people who are making it, having a good, productive and fulfilling life, Kuss said.
That point definitely comes across, according to Marianne Hessner, town-wide coordinator of the Understanding Disabilities program, which is run in the eight elementary schools. Not only do they have a good sense of humor, but they also have the energy and the drive to do what they want despite not being able to see. They are wonderful role models.
The real mark of their success in the schools, however, usually comes years after when, for instance, a student or parent of a student approaches Kuss or Ceconi around town to compliment them on their work.
We think we've done a great job, Kuss said, but we don't know until later. That's a good feeling.
Health Troubles
Barbara Ceconi shows Lincoln School students her electronic dictionary during the Understanding Disabilities unit on visual impariments in March.
While Kuss and Ceconi devote their lives to spreading the word about the importance of access and understanding diversity, they have overcome huge personal hurdles along the way.
Ceconi has dealt with some serious health challenges recently. On dialysis for nearly two years, she was first on the list for a kidney and pancreas transplant in Vermont last spring. However, a stress test in May revealed heart trouble and stents were installed with the hope of correcting the problem.
Ceconi suffered another setback in July when she was hospitalized with rheumatic fever. But by the time she recovered in November, her cardiac condition had become 30 percent worse and she learned she would require bypass surgery.
On Dec. 5, 2003, Ceconi had a double bypass at Beth Israel Deaconess Medical Center.
During her recovery, the Courtyard Marriott on Webster Street stepped up to the plate putting up the couple free of charge for five nights. The couple's friend, Polly Cornblith, contacted the hotel, knowing Ceconi would have trouble negotiating the three flights up to her apartment.
These health setbacks cost Ceconi her standing on the Vermont transplant list, but once recuperated, she called the transplant coordinator requesting she be put back on the list. Instead, Ceconi was told she would likely have to wait until April for a transplant. That was Black Tuesday, Kuss said.
I was devastated, Ceconi said, noting she was worried her health was only going to further deteriorate by April.
But she didn't give up hope, and called Beth Israel, where she was on the transplant list.
On Jan. 31, she had a kidney transplant, and on Feb 9. received a new pancreas.
We're members of the organ of the month club, Kuss said, with the characteristic tongue-in-cheek humor the couple shares.
Just as Kuss and Ceconi are able to find humor in the situation, they are determined that nothing will stand in their way to get their message of accessibility and understanding differences across.
"We've taken it on as a kind of a crusade, getting people to think more positively [about disabilities]," Kuss said.
For Ceconi, who reports she's feeling great, her personal health battles have only served to underscore her and her husband's mission.
It's taught me to really appreciate every day and make sure I'm doing good things, she said. It's making sure that in your community, however you see that—as your neighborhood, your town—that people get fair treatment and that everyone gets on the same page.
Reprinted by permission: Copyright � 2004 The Brookline TAB.
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