By Geoff Kirsch
Believe it or not, people with disabilities constitute the single largest minority in the United States—some 20% of the total population.
Closer to home, roughly 85,000 Alaskans report some type of physical, cognitive or age-related disability, a total that only stands to grow in the coming years. Alaska leads the US in aging rate; Southeast Alaska leads the state.
“Alaskans with disabilities want to stay in their communities and live in their homes,” says Jorden Nigro, Deputy Director of SAIL: Southeast Alaska Independent Living. “We walk beside them in that process.”
As the name implies, SAIL seeks to inspire personal self-sufficiency by providing independent living services to more than 1000 people in 18 different communities throughout the region. These services include: advocacy, information and referrals, assistive technology, peer support, transportation solutions, vocational services, skills training, recreation opportunities and sign language interpretation.
“Individuals with disabilities are just that—individuals, each with unique needs and circumstances,” says Nigro. “And of course, Southeast Alaska, itself, presents unique challenges. Like everything around here, a lot of times you have to find creative solutions.”
SAIL is one of hundreds of independent living centers throughout America, a legacy of the disability rights movement of the 1960s. Forged alongside other large-scale rights movements of the time period, it, too, inspired federal legislation: the Americans with Disabilities Act, which provides comprehensive civil rights protection for people with disabilities. Enacted in 1990, the ADA celebrates its 25th anniversary this year.
As a grassroots organization, SAIL addresses a wide variety of independent living issues. While a fair portion of this work revolves around home modification and transportation, in Southeast Alaska, enjoying a full life experience—recreation, housing, transportation, and work—can entail a different set of accessibility considerations altogether.
“We’ve worked with folks to get accessible fishing gear on boats,” Nigro says. “And to make garden beds accessible.”
Of course, not every project is as large as modifying a gillnetter or configuring adaptive gardening. Gearing services to every individual, Nigro explains, hinges on reaching out to those individuals, especially in more geographically isolated locations where resources tend to be limited.
As such, an important part of SAIL’s work in smaller communities involves introducing technologies. This often takes the form of durable medical equipment and new—and more importantly less expensive—assistive devices, such as magnifiers and “pocket talker” personal sound amplification systems.
“Many of us will lose our hearing, but not all of us can afford hearing aids or has access to an audiologist,” says Nigro.
“We’ve also recently been providing pens that record what you write, so it can then ‘read’ your writing back to you.”
“Being independent doesn’t mean you’re all alone,” she says. “It means you are in charge of the choices in your life. You are in the driver’s seat.”
Not surprisingly, SAIL’s biggest challenge remains the cost associated with reaching more geographically isolated locations. As such, it relies heavily on grant funding for rural travel, such as the United Way’s Community Impact Grant; SAIL ranks as a perennial Community Impact Grantee.
“The Community Impact Grant certainly helps facilitate our work in rural Southeast,” she says. “With enough funding, ideally, we’d have programs in every single community.”
For one, SAIL would like to expand its adaptive sports and recreation program, ORCA, which currently operates offices in Juneau, Ketchikan and Sitka, offering adaptive kayaking, skiing/snowboarding and adaptive backpacking, in addition to equipment loans, classes and multi-day domestic and international trips.
Also on SAIL’s horizon: accessible tourism.
“We’d like to make Southeast really accessible for visitors with disabilities—we think it has the potential to become one of the most accessible tourist destinations in the world,” says Nigro.
Central to SAIL’s work is its partnership with the United Way of Southeast Alaska, and, through that, the United Way’s other partner agencies.
“Southeast Alaska is small enough for organizations to really work together,” says Nigro, citing the potential of umbrella organizations like the United Way to facilitate collaboration and referral.
She also credits the United Way’s Annual Giving Campaign as an especially effective means for people to give back to the community.
“It lets people do so much without barely even noticing,” she says. “Five dollars a week out of your paycheck may not seem like much, but it really goes a long way… United Way partner agencies really count on that.”