Born with a rare condition called arthrogryposis, one Minnesota mom explains how she and her partner are raising a daughter and advocating for parents with disabilities along the way.

By Cassie Shortsleeve
June 29, 2020
Advertisement
Nikki Villavicencio and baby Alley.
Courtesy of Nikki Villavicencio

When Nikki Villavicencio and her partner Darrell Colson of Maplewood, Minnesota, found out that they were having a baby in 2011, they were shocked. "We were both told all of our lives that we would never be able to have children," she says.

Born with a rare condition called arthrogryposis, a congenital joint condition, Villavicencio—who is a disability advocate—spends most of her day in a wheelchair. So does Colson, who was born with cerebral palsy and runs a nonprofit for people with disabilities.

Excited, the couple had no idea about the added struggles that parents with disabilities often have. But in 2012, they became parents to a healthy baby girl, Alley, and quickly realized that families with disabilities face unique challenges. For example, while many expenses (like electric wheelchairs) are covered by Medicaid and government assistance, home care agencies often aren't allowed to provide coverage for children, leaving gaps in care for the full family.

Despite the many obstacles, Villavicencio uses these experiences as fuel for her advocacy work. She also offers takeaways for parents who may be facing similar challenges. 

Live Creatively and Learn Along the Way

Because she has limited mobility with her arms and hands, Villavicencio uses her feet to do everything, she says, including cooking and taking care of her daughter. "I don't use my hands at all." Instead, she eats, types, writes, and has even changed her daughter's diapers with her feet.

She also has food appliances, such as a microwave, on the floor in their kitchen. "I didn't stand in the kitchen with my mom making food with her when I was a kid growing up, so I didn't even get exposed to some of the things that other adults would have by the time they were my age. Nobody teaches you how to cook with your feet."

While certainly challenging, finding ways to navigate the day-to-day with her disability in ways that give her autonomy has helped her along the way.

Darrell Colson and baby Alley.
Courtesy of Nikki Villavicencio

Shift Your Priorities

Villavicencio's budget is small—it consists of less than $300 a month for food stamps, for example. Costs for things like paratransit service—a door-to-door service specifically for people with disabilities—runs $4 for a one-way ride. "It's supposed to mirror the bus system and we use it on days that it's too cold to go to the bus stop or when we're too far away from bus stops."

But with it comes additional out-of-pocket costs, like snow removal, since the service will not come to your door if the walkway is not shoveled. To save, some days Villavicencio chooses to take the city bus despite it taking much longer and being more of an inconvenience.

Being a mother has also forced her to think ahead. "Having a daughter means that I have to think about my activities throughout the month and what I can and can't do based on how much money I have." She says the family took their first trip over Christmas to Las Vegas and saved for a year to make it happen. "When you don't have a lot of money to work with, you learn to plan ahead as much as you can."

As is true with any parent, she says that she has to prioritize what is best for her family—not only what she wants to do. 

Use Social Media for Support

Many parents and people with disabilities reach out to Villavicencio on Facebook, asking questions about living with a disability, finances, county services, home modifications, and more. "I'm very thankful for the social media world and how that has connected people, especially along the lines of financial burdens," she says.

Many people with disabilities, she notes, are hesitant to ask questions—even to managers, social workers, or family members—since, "if you show the slightest vulnerability of not being able to handle your life, you could fear you'd get your independence taken away." Connecting with others via social media has provided a safe space for Villavicencio to find resources and have open conversations about the realities of day-to-day life. “There are a lot of really good resources on Facebook and in Facebook groups that parents can use,” she says.

Courtesy of Nikki Villavicencio

Put Your Family on Display

Villavicencio says that, at times, in order to keep up with her work, she's had to bring her daughter along. In a way, this also showed people in public that it was possible to have a disability and a family. That kind of visibility “opens up the next generation to understand that families can look all different ways,” she says. 

It can also be motivating. Villavicencio mentions a good friend with the same disability who does not have children but looks to her for inspiration. “She loves coming over to my house and just seeing how we do things," says Villavicencio. “She says things like, ‘I don't know how I would do it without knowing you, but now that I do know you, I feel like I could do this someday.'”

Be an Advocate for Yourself and Others

Villavicencio has faced many different hurdles throughout her journey with her disability, including not qualifying for child care assistance at certain times in her life, lost income due to gaps in coverage, and having to bring her daughter with her practically everywhere. But she used those tough times to find solutions and dive into advocacy work. That has led her to advance innovative technology, such as a car seat that hooks to the front of a wheelchair. Villavicencio has also drafted state legislation that would provide money for services related to child-rearing tasks in Minnesota.

"My experience has helped me to educate people about the resources that are available to them that they might not have been aware of," she says. "My disability is the reason why I do the advocacy work that I do. I know the struggles that I have are nothing compared to what others like me have. And if I have the ability to speak out then I'm going to speak out on behalf of those who can't."

Comments

Be the first to comment!