Four-year-old twins Max and Major Lindberg, along with their parents and big sister Malena, are a team of superheroes. Working together every day, this family overcomes obstacles to accessibility, advocating for change in big and small ways to make the world a better place.
Before Max was born, he 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 skilled intervention and special accommodation to make sure 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, “Hi Max” to her brother so he feels welcome in everyday situations.
Max and Major Lindberg (Photo by Something Blue Photography, Arlington Heights, Ill.)
The mother of the three M’s, Megan Scholl Lindberg, is grateful that the Americans with Disabilities Act has opened many doors that otherwise would have been closed to Max. On the thirty-first anniversary of ADA’s enactment, however, she says there are still opportunities for improvement.
“So much has to be done,” she remarked. “A blind para Olympic just had to drop out as her personal care assistant wasn’t allowed to attend Tokyo.”
As one of Max’s personal caregivers, Megan is confronted with barriers to his safe and sanitary care in places that kids love to visit. For instance, at the trampoline park, changing stations are getting too small for the growing toddler. And there are more high top tables than the low ones that Max can use.
When Megan asked if one of the low tops could be designated for ease of use by people with disabilities, the manager readily agreed.
“Malena lit up,” Megan recalled. “She said, ‘Mom when you do these things to help Max it makes a difference for others. I’m so proud of you.’”
But the next time they went to the park, there was no sign. Megan comforted Malena by speculating that the sign was perhaps just not ready for posting, or maybe the manager forgot his promise.
“It’s hard to remember or realize how important something is to someone if it doesn’t affect you too,” Megan said.
In Calloway County, Jennifer Johnson understands how it feels to encounter barriers because of a disability. Recently designated as having bipolar disorder, her disability is invisible. As a result, having a bad day might lead co-workers to draw mistaken conclusions about whether she is taking her prescribed medication.
“There needs to be more awareness and education,” Jennifer said. “People assume you’re not able to do a lot of things. I can see it from their point of view because they just don’t understand.”
Asked about the impact of ADA, she admitted that accessibility for those with physical disabilities has come a long way, but there are still stigmas and stereotypes associated with mental health.
When asked if she wanted to mask her identity for this article, Jennifer declared, “I don’t honestly care. I’ll tell anybody. We’ve been hushed back into the shadows and it’s time to talk about it.”
Talking about disabilities and doing things to assist others with disabilities is Carrissa Johnson’s job. As satellite office manager of Murray’s Center for Accessible Living, she excels at what she does because of her leadership and communication skills. Her own personal experiences inform her leadership and advocacy on behalf of those with disabilities. When she was growing up, for example, access to many of the places people routinely go was restricted. The store, the library, getting on a bus, playing on the playground – mundane acts like these were not possible for people in wheelchairs.
When Carrissa moved to Murray and went to vote for the first time, she discovered that her polling place was a church that was not accessible.
“What about separation of church and state?” she mused.
“The parking lot was all gravel and there was no ramp,” she went on. “People don’t realize the small things. They assume access.”
Fueling vehicles is another challenge because self-serve pumps are not easy to operate. “The law says my gas should be pumped as long as there are two clerks on duty,” Carrissa says.
“It’s like Russian Roulette. You just never know what’s going to happen. Sometimes I even call ahead. Or once I stopped at the drive-thru first to see if someone was available to pump, and the person just said, ‘There’s a full-service station on 4th Street.’”
Advance notice is even advisable for doctor visits. “Access for medical exams doesn’t always work, so I have to call beforehand to find out if the examining table can be lowered.”
Everyone interviewed for this article applauded the progress ADA provides but also agreed there was room to grow. According to Carrissa Johnson, “Education is key. Sometimes at the Center (for Accessible Living), we worry about the younger generation. They don’t always understand what had to be done to get us here. History is important.”
With that awareness — and continuous improvement — accessibility and inclusion will increase and communities will benefit, so 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 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 poetry books that deal with disabilities is available at www.clmp.org.
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