Emilie Angle struggles to speak and her movements are dictated by the effects of mitochondrial disease, a genetic disorder that is both progressive and incurable.
“I almost died in the hospital when I was 7, and the majority of patients who are diagnosed or start showing signs (of the disease) at an early age do not live past 13,” said Angle, 23.
“That alone has strengthened my faith.”
Life’s challenges haven’t stood in the way of her achieving in school or work. That have might have been more difficult before the Americans With Disabilities Act, which became law 25 years ago today.
Considered to be one of the nation’s most comprehensive pieces of civil rights legislation, the law has two key principles: It bans discrimination and strives to ensure the disabled have equal access to opportunities, not just public buildings and transportation.
Angle is able to achieve some of that in part by working at The Next Chapter Bookstore in the Main Street Market off the Gainesville square. The bookstore is a nonprofit organization that aims to help and “inspire those with disabilities to reach their maximum opportunity for independence,” according to its website.
“My biggest (concern) for young adults with disabilities is that the isolation kills them,” said Mary Margaret Calvert, executive director of Our Neighbor Inc., a Gainesville-based organization that helps disabled residents with housing.
“Just being able to get them into a building makes a huge difference,” she said. “When they’re isolated, you see more need for meds, more medical attention, more need for psychiatric care.
“When they’re in a group, when they’re in a community, they’re part of something, even if it’s volunteering.”
ADA traces back to 1986, when the National Council on Disability recommended enactment of a civil rights law for the disabled and drafted the first version of the bill introduced in the House and Senate in 1988.
Then-Sen. Tom Harkin, D-Iowa — inspired by his older brother Frank, who was deaf — was the bill’s chief sponsor and one of its biggest champions. In a televised event, the bill was signed on the White House south lawn by President George H.W. Bush.
“That was our moment,” recalled Justin Pressley, president of Gainesville’s Access to a Better Tomorrow.
Pressley suffered a spinal cord injury in a 1989 motorcycle accident that left him quadriplegic. Rather than just live with his disability, he became an advocate, co-founding the Disability Resource Center in Gainesville, a nonprofit organization that provides independent living support.
The 14th annual ADA Memorial 5-kilometer race held Saturday benefited Access to a Better Tomorrow, which emphasizes recreational opportunities for the disabled, such as through the North Georgia Screamin’ Eagles Power Soccer Club.
Area residents also had the chance recently to learn more about the landmark law through the Americans with Disabilities Act Legacy Tour, a traveling exhibit “designed to raise public awareness and generate excitement” about ADA.
Pressley believes that ADA has made great strides, particularly in access to public buildings and businesses.
“We make sure that every facility has an accessible restroom and means of getting in and out of a building properly,” said Joe Davidson, Gainesville’s building official.
A lot of items are taken into consideration, from the slope of a ramp to the width of a door.
“I try to think of it in a way that if I was having to utilize that, I want to make sure that I’m able to get in and out where I need to go.”
Another benefit of the law, Calvert said, is “the reality that (disabled) students are going to come out of school systems and transition to ... something after high school.”
Some former students, such as Jamella Frazier, have to deal with numerous challenges. Her mother died when she was 2 years old, she doesn’t know her father and she has had to live virtually on her own, with just disability income to support her.
Now in Our Neighbor’s care, Frazier, who has cerebral palsy, can walk with the help of crutches but she sometimes needs a wheelchair. Adding to her struggles is a battle with lymphoma, which is requiring her to undergo inpatient chemotherapy treatments.
Frazier is working at The Next Chapter and wants to eventually become a veterinarian’s assistant; she’s working now on her GED.
She said doesn’t really dwell on her circumstances or hurdles, past or future.
“I don’t really have a word for it,” Frazier said, pausing to reflect on her life. “I don’t want anything to stop me, really.”
In 1999, rights for disabled persons were strengthened by the U.S. Supreme Court’s Olmstead decision, which said that “unnecessary institutionalization violates a person’s civil rights,” Pressley said.
“States are supposed to have a working plan that will transition people from nursing homes into the community,” Pressley said.
Still, there is more work to do in ensuring equality for disabled people, he said.
“There is no ADA police — that’s one of the problems we have right now,” Pressley said. “Individuals have to enforce their own rights.”
Still, Angle said she appreciates the law’s biggest changes.
“It has given me access to places that I otherwise would not be able to get to at all or would have to crawl to,” she said.
Harkin has said that before the law passed, the disabled had to resort to heart-wrenching methods to gain access, such as crawling on hands and knees to climb stairs.
“We must continue the fight for policies that will make the goals of the ADA a reality: equal opportunity, full participation, independent living and economic self-sufficiency for people with disabilities and their families,” he wrote in an online blog last week.
And there’s one other thing, Angle said.
“We need to live every day to the fullest,” she said.