Connecting for change

The power of awareness

When his wife, Michele, was diagnosed with MS in 2006, Ralph Montefusco dealt with the news the best way he knew how: He joined a Society committee in his area.

“I’m not a particularly warm, fuzzy type of guy—support groups aren’t really my thing,” says Ralph. “What I am, however, and what I’ve always been, is a political activist. When Michele was diagnosed, we started going to Society events, and by 2007 I was working as a volunteer on the Government Relations Committee.”

For Ralph, who became chair of the committee in 2008, it was a natural fit. Although he’d spent the first 18 years of his career as a technician at IBM, he spent the last 10 in more political endeavors, first as a labor organizer, then as a political director for the 2012 campaign of Vermont State Treasurer Beth Pearce. Before retiring in 2012, he ran his own political consultancy, leveraging his lifelong experience as a volunteer for political campaigns, commissions and committees. “Advocacy is what I naturally go toward, so I decided to use my personal network here in Vermont to advocate for people with MS,” says Ralph, who’s now retired.

Ralph’s network—which includes elected officials from Vermont, whom he met during his political organizing days—has helped the Society make state-level progress on important issues such as health care. What Ralph’s most proud of, however, is the local change he’s effected in Burlington, where accessibility is a major priority.

“People with MS have mobility issues,” Ralph explains. “Because they can’t always get into buildings and don’t always have access to restrooms, they tend to stay home. That means they’re not going to events or participating in elections and community forums. It means they’re not enjoying life like the rest of us.”

In a place like Burlington, known for its progressive culture, vibrant downtown and lush outdoors—that’s a travesty, says Ralph, who recently helped revive a defunct city group known as the Burlington Accessibility Advisory Committee (BAAC), which is dedicated to making Burlington more accessible to people with disabilities. The committee includes a representative from the Department of Parks and Recreation, which recently installed a special ramp and mat that make a local beach on Lake Champlain wheelchair-accessible. Likewise, the city’s zoning administrator and building inspector serve on the BAAC and are actively encouraging accessibility among local businesses that apply for building permits.

“We’re also partnering with the Vermont Statewide Independent Living Council, which has a website called Accessible Adventures,” Ralph says. “You can go online and rate your experience with Burlington. Whether it’s a restaurant, a public building or a park, you can write a review so people with disabilities who visit from Boston or Montreal know where they can have dinner or see a show. We see it as economic development.” While Accessible Adventures is exclusive to Vermont, many state and local tourism bureaus publish Web pages dedicated to accessible travel.

Although Ralph’s connections were with government officials, they don’t have to be. A connection with a local business—a café, grocery store, movie theatre or boutique—can have just as much of an impact. When they know their customers and the challenges they face, businesses are more likely to accommodate them.

“A local restaurant that didn’t have an access ramp just put one in,” Ralph says. “The next week, four of us [from the BAAC] went there for dinner and said, ‘We’re from the committee, and we’re here specifically because you did this. Thanks a lot.’ ”

It all boils down to awareness: The best way to improve your community is to be in it, asking for help from those who can give it. “The key to being an effective MS activist is building and maintaining personal relationships,” Ralph says. “You have to be visible in your community and let people know you’re there.”

Matt Alderton is a Chicago-based freelance writer and editor.