Sean Spence creates disabilities advocacy group [Columbia Daily Tribune (MO)]

As an event planner, political campaign organizer, entrepreneur and marketer, Sean Spence has put his energy into countless causes. Now he wants to mobilize Columbia's disability advocates to work together.

And this time, it's personal.

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Spence, 42, who was diagnosed with multiple sclerosis 10 years ago, recently completed a 10-day course of treatment that included a daily injection and cost a total of $62,000. The price tag was the difference between walking and using a wheelchair.

"I happen to have very good insurance," said Spence. "Not everyone does."

The recent flare-up of his MS symptoms was the catalyst for shifting his energy to create the Como Disabilities Advocacy Network, or CDAN. He has invited local disability advocates and representatives of agencies that provide services to people with disabilities to attend a Feb. 20 brainstorming session to discuss working together to achieve common goals.

Already, nearly 30 people have said they will attend the get- together from 3:30-5 p.m. that day in the conference room at The Food Bank for Central & Northeast Missouri, 2101 Vandiver Drive.

"I'm really just trying to act as a coordinator" for others who are disability advocates, said Spence, who works as director of special projects at Marathon Building Environments.

"There are a lot of people doing a lot of incredible work" in advocating for safer sidewalks, independent living, lobbying, greater compliance with the Americans with Disabilities Act, and other issues, he said.

Troy Balthazor, the ADA specialist at the Great Plains ADA Center in Columbia, is among those who support Spence's initiative.

"In the past there have been attempts at this," Balthazor said, but he said those efforts have not resulted in a long-term, cohesive network of agencies and advocates. "You don't have an umbrella group," he said.

The concept of CDAN is "absolutely" needed, he added. "It's an opportunity for groups to come together to be part of something bigger."

Balthazor said a unified voice could be more effective in working with city government to make Columbia more accessible.

"If this is something that will help us come together as an undivided group, that's a good way to go," said Leslie Anderson, program director for Services for Independent Living.

Anderson said there is a vast array of organizations that provide services and advocacy for mental illness, independent living, developmental disabilities and others.

Networking is "essential," she said, for the work that SIL and similar organizations do. She likes the idea of advocates having a unified voice.

"We haven't met yet, so it would be premature to see what the direction of this group is going to be," Anderson said.

Spence said he has no preconceived agenda or list of priorities for CDAN, but he expects there could be common ground on the issues of transportation, jobs, housing and accessibility.

"I get the impression this is something people want," Balthazor said. "We're obviously stronger when we work together."

CDAN is not a membership group or a competing entity with other disability service-oriented agencies, Spence said.

Besides joining forces to advocate for policies that will make Columbia more accessible for people with disabilities, Spence said there's also an opportunity to educate people. Disability issues that get resolved, he said, "will benefit everyone."

Spence said he has had a good history of working with city officials, but he realizes that others might not have similar experiences.

"The city is going to be someone who has to hear us," he said. "I'm not going anywhere. The disability community as a whole is not going away."

[copyright] 2013 Columbia Daily Tribune . All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

This article was published in the Saturday, January 26, 2013 edition of The Columbia Daily Tribune with the headline "Spence called to advocacy work: Battle with MS makes latest effort personal."