Luis Hernandez hangs posters at the Mendenhall Mall advertising this weekend’s Disability Pride Celebration. The celebration is Saturday, July 21, from 3 to 5 p.m. at Marine Park. (Michael Penn | Juneau Empire)

Luis Hernandez hangs posters at the Mendenhall Mall advertising this weekend’s Disability Pride Celebration. The celebration is Saturday, July 21, from 3 to 5 p.m. at Marine Park. (Michael Penn | Juneau Empire)

Grassroots group plans Disability Pride day at Marine Park

Event falls on ADA anniversary, and amid policy, funding changes

In 1990, the Americans with Disabilities Act, which prevents discrimination of individuals with disabilities, brought civil rights protections to people living with disabilities. Twenty-eight years since the ADA passed, a group plans to celebrate its anniversary and the future of living with disabilities in Alaska.

The Disability Pride day, 3-5 p.m. Saturday at Marine Park, is not a political rally, organizers said. It’s a moment for those living with disabilities to speak up and take pride in their contributions to their communities. For the first time, five communities in Alaska will join celebrations across the country in cities like New York and Chicago.

Juneau event organizer Kim Champney and volunteers Luis Hernandez and Melvin Starr worked to put up posters for the event on Tuesday at the Mendenhall Mall. They’re volunteering as security.

“Me and Luis are like security guards,” Starr said.

“We’re going to watch everybody, make sure nothing goes wrong,” Hernandez said.

Disability Pride celebrations will take place in Kenai, Kodiak, Juneau, Fairbanks and Anchorage. It’s an event for people with all types of disabilities, both developmental and physical.

Organizer of the Kenai event Maggie Winston — who suffered from an autoimmune attack in 2005 that left her without the use of her arms and legs — is the chair of Governor’s Council on Disabilities and Special Education. The event is a chance to celebrate the contributions and diversity of Alaskans living with disabilities, Winston said.

“Everyone is touched by somebody with a disability,” Winston said.

While the event marks the anniversary of the ADA, it also comes after the legislative passage of the Developmental Disabilities Shared Vision Bill, or Senate Bill 174, Winston said, which adds language to the mission statements of State of Alaska health care service providers. It mandates that service providers offer those living with disabilities more participation and flexibility in making choices about what services they receive. SB 174 awaits Gov. Bill Walker’s signature before becoming law.

The legislation is a “super big win for Alaska,” Winston said; Disability Pride day is a moment to celebrate that.

“This is a big statewide celebration, not only for just the idea of pride and individuality, but because of the ADA, and especially because of the shared vision bill,” Winston said.

Federal and state policy is changing for those living with disabilities, Champney said. Health care markets look much different now than when the ADA passed. The recession in Alaska has forced a belt-tightening for service providers. Technological advancement has allowed individuals with disabilities more autonomy.

“It’s like all these things came together at the same time,” Champney said.

[Local movie theaters now offering devices for hearing, visually impaired]

During the recession, lawmakers have cut “significantly” from Medicaid funding, a major source of funding for disability services, Champney said. At the same time, the federal government passed what’s known as the “final rule” which says that federal agencies must adopt employment goals for individuals with disabilities.

“That’s been really good, but at the same time, when there’s been a big budget cut, it’s hard for organizations to manage that,” Champney said.

A push against what’s called the “medical model” has gained steam, Winston said. More service providers are speaking of disabilities less as a problem and more as a natural, even beautiful part of human diversity. Self-determination and autonomy for people with disabilities is becoming the norm, Winston said, and individuals with disabilities are taking more control over what services they receive.

“If you talk to anybody in the disability advocacy realm, especially federally these days, we’re moving away from this medical model and moving more toward a model where individuals have more choice,” Winston said.

Education on these topics is one focus of the event. But it’s also just an opportunity to have fun and reach out to people in the community living with disabilities. Several speakers (the list is still being finalized) will give talks between performances by the Latseeni Al’eix Dancers, Mindy Rowland, the Jambusters, and Dale Wygant and his Oompah Band. Everyone performing has a personal connection to people living with disabilities, Champney said. Free hot dogs will be available.

Two movies at the Gold Town Nickelodeon are being screened this weekend as part of Disability Pride day. At 7 p.m. Thursday and 9 p.m. Friday, Gold Town will show “Andy Irons: Kissed by God,” a film about the life and death of bipolar pro surfer Andy Irons. “Keep the Change,” a fictional film about a romance between two people with autism spectrum disorder, will show on Saturday at 5:30 p.m.


• Contact reporter Kevin Gullufsen at kgullufsen@juneauempire.com. Follow him on Twitter at @KevinGullufsen.


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