Constance Alexander: 31st anniversary of People with Disabilities Act showcases on a regular basis heroes
The four-year-old twins Max and Major Lindberg, together with their parents and big sister Malena, are a team of superheroes. Working together on a daily basis, this family overcomes barriers to accessibility and advocates for changes large and small to make the world a better place.
Before he was born, Max suffered an intraventricular hemorrhage, or IVH. He has cerebral palsy, epilepsy and is considered medically fragile. Unlike his thriving twin Major, Max relies on daily expert intervention and special accommodations to ensure he is safe and comfortable.
Malena, eight years old, has been on a crusade for inclusion from the start. She even made a video to encourage people to say “Hello Max” to her brother so that he can feel welcome in everyday situations.
The mother of the three M’s, Megan Scholl Lindberg, is grateful that the Americans with Disabilities Act has opened many doors that would otherwise have been closed to Max. However, on the thirty-first anniversary of ADA’s enactment, she says there is still room for improvement.
“There is so much to be done,” she remarked. “A blind Para Olympic just had to stop because her personal care assistant was not allowed to visit Tokyo.”
As one of Max’s personal carers, Megan faces obstacles to safe and hygienic care in places that children love to visit. In the trampoline park, for example, the changing stations are too small for the growing toddler. And there are more high tables than low ones that Max can use.
When Megan asked if one of the low tops might be suitable for people with disabilities, the manager immediately agreed.
“Malena lit up,” Megan recalled. “She said, ‘Mom, if you do these things to help Max, it makes a difference to others. I’m so proud of you.'”
But the next time they went to the park, there was no sign to be seen. Megan comforted Malena by speculating that maybe the sign was just not ready for release or the manager forgot his promise.
“It’s hard to remember or realize how important something is to someone when it doesn’t affect you too,” Megan said.
In Calloway County, Jennifer Johnson understands what it feels like to encounter barriers because of a disability. Recently, her disability was classified as bipolar disorder. As a result, a bad day can lead co-workers to make wrong conclusions about whether she is taking her prescribed medication.
“There needs to be more awareness and education,” said Jennifer. “People assume that there are many things that you cannot do. I can see it from their point of view because they just don’t understand. “
When asked about the impact of ADA, she admitted that accessibility has come a long way for people with physical disabilities, but stigmatizations and stereotypes related to mental health still exist.
When asked if she wanted to cover up her identity for this article, Jennifer said, “I honestly don’t care. I will tell everyone. We’ve been eclipsed again and it’s time to talk about it. “
Talking about disabilities and doing things to help others with disabilities is Carrissa Johnson’s job. As the Branch Manager of Murray’s Center for Accessible Living, she excels through her leadership and communication skills. Her own personal experiences flow into her leadership and advocacy for people with disabilities. For example, when she was growing up, access to many places that people routinely went was restricted. The shop, the library, getting on the bus, playing in the playground – such everyday activities were not possible for wheelchair users.
When Carrissa moved to Murray and started voting for the first time, she found that her polling station was an inaccessible church.
“What about the separation of church and state?” she mused.
“The parking lot was all gravel and there was no ramp,” she continued. “People don’t see the little things. You accept the access. “
Refueling vehicles is another challenge as self-service pumps are not easy to use. “The law says my gasoline should be pumped while there are two employees on duty,” says Carrissa.
“It’s like Russian roulette. You just never know what’s going to happen. Sometimes I even call ahead. Or once I stopped in the drive through first to see if someone was available to pump and they just said, ‘There’s a full service station on 4th Street.’ “
Pre-registration is also advisable when visiting a doctor. “Access for medical examinations doesn’t always work, so I have to call ahead to see if the examination table can be lowered.”
Everyone interviewed for this article applauded the advances ADA is making, but also agreed that there was room for growth. Carrissa Johnson says, “Education is key. Sometimes we worry about the younger generation in the center (for barrier-free living). They don’t always understand what had to be done to get us here. History is important. ”
With this awareness – and continuous improvement – accessibility and inclusion will increase and communities will benefit so that Max Lindberg can be with his twin and do many of the things that bring joy to little boys.
For people with disabilities, parenting creates additional challenges and opportunities. Carrissa Johnson’s story is one of the chapters in A Celebration of the Family: Stories of Parents with Disabilities. The book was edited by Dave Matheis and published this month by Advocado Press.
A reading list of fiction, non-fiction, and volumes of poetry dealing with disabilities is available at www.clmp.org.
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