Everyone seemed to have an opinion about whether Donna Fox was fit to be a mother.
Her rheumatoid arthritis hits every joint in her body from her jaw to her toes. With it came the kind of chronicpain that makes it more difficult to unbuckle car seats, twist off baby bottle tops, and lift children from the ground.
It did not, however, make it more difficult for her to love and care for her two sons after she gave birth.
The Louisville woman’s words are bold and proud as she shares her story in a recently published anthology from the Center for Accessible Living Inc. about families with parents who have disabilities. “A Celebration of Families: Stories of Parents with Disabilities” highlights30 different testimonies that profile families with a variety of disabilities.
“A physically healthy family doesn’t necessarily translate into a good family,” Fox writes in the book, which is currently for sale on amazon.com. “Not everyone is capable of being a good parent, but a disability has little to do with it.”
As you flip through the pages of the anthology, that theme appears quite a bit.
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Dave Matheis, with the Center for Accessible Living in Louisville, began compiling the collectionof stories last spring. In the pages, you hear from people with mental illness, vision impairments, deafness, mobility issues and missing limbs, among other existing healthconditions.
One woman featured in the book was born without a leg and an arm. She’d been told her whole life she shouldn’t get pregnant and have a baby, but thatdidn’t stop her.
Instead of giving in, she adapted.
In order to give birth safely, she would need a C-section, soshe talks in her story about finding the right doctor to work with her during her pregnancy.
Many of the parents in the book with hereditary disabilities discuss the emotional struggle that comes with decidingwhether they should have biological children and potentially risk passing on the trait. Some go for it, and care for their children just as they were taken care of when they were young. Others chose to pursue adoption with the hope that the agencies focus on the love they have to give rather than whatever accommodations might be made in their home.
All of the stories are raw, real, and emotional. But there are light moments, too.
Rick Roderick, who was born blind, and his sighted wife adopted a young girl with low vision. The way their now-grown child, Melissa, tells the story, she never knew until she was older that her dad couldn’t see. The daughter just thought there were some things her mom did and something her dad did. When her father read to her, he used brail books, and so he told her stories with the lights off.
She complained loudly one night when her mom filled in and read to her with the lights on.
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Keith Hosey, of Louisville, shares what being a father means when you have both visible and invisible disabilities. He was born with a club foot and was later diagnosed with general anxiety disorder and major depressive disorder.
He is candid about suicidal thoughts he’s had over the years, and he’s heard people with depression wonder if that’s a fair home life for a child. He argues, though, that his daughter is his best “protective factor.” Having her in his world makes him want to take his medicine, be healthy and keep his mental illness under control, he writes.
The clubfoot limits some of his mobility, but it doesn’t keep him from being an active dad, he writes. He explains in the pages that his daughter started outrunning him when she was about 3 years old, and he always worried that if she darted away from the front yard, he wouldn’t be able to catch her. His wife, in those moments, needed to step in — and she did.
In his story, he discusses the fatigue that comes with the chronic pain in his feet and his workaround solutions. When the family takes big outings to the zoo or an amusement park, he prefers to use a motor scooter sohe can still be there in the moment with his daughter.
“I would tell a person with a disability who is considering parenthood don’t fill your head with worries and what-ifs,” he says in the book. “There are certainly people and communities out there that can help with adaptions, accommodations and suggestions.”
The concept for the book started asa panel of parents with disabilities for a conference, but the more Matheis thought about it, the more he saw the message needed to be bigger than that because the stories may show otherpeople living with disabilities that having a family of their own is possible, Matheis told me.
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He hopes the book, which shares the personal accounts of families both from Kentucky and other parts of the country, helps change public perception that those with disabilities are “unfit to be parents.”
“There’s so many examples… of people getting not very nice comments or some kind of bias,” Matheis said. “Hopefully people who read it would be more respectful if they see individuals with disabilities in the community with their kids.”
Features columnist Maggie Menderski writes about what makes Louisville, Southern Indiana and Kentucky unique, wonderful, and occasionally, a little weird. If you’ve got something in your family, your town or even your closet that fits that description — she wants to hear from you. Say hello at email@example.com or 502-582-7137. Follow along on Instagram and Twitter @MaggieMenderski.