Fatherhood and Disability

June 16, 2017 / 0 Comments

This blog was written by Dr. Miriam Heyman, a Program Officer at the Foundation

Many of us will be celebrating Father’s Day this weekend.  According to Hallmark, Americans will give 72 million cards to dads, husbands, and other men in our lives. The United States Census Bureau estimates that there are more than 70 million fathers in this country.  And, like virtually all other groups of people, the 70 million dads in this country include people with and without disabilities. This blog is a shout-out to all dads, and a celebration of the experience of fatherhood. It includes interviews with two dads who have disabilities, Eli Wolff and Keith Jones. Eli and Keith, both of whom have cerebral palsy provided us a window into their joyous and hectic lives. They talked about elements of the fatherhood experience that seem almost universal, regardless of ability. They also spoke about how disability interfaces with their parenting, and in doing so, they offer important insights for us all.

Eli with his wife, Cheri, and their daughter, Stella.
Eli and his daughter, Stella.
Photo Credit: Chris Cardoza

The stories that Keith and Eli shared are portraits of fatherhood – they conveyed love, patience, delight, and joyful chaos. Eli became a father only four weeks ago when his daughter Stella was born. Keith has seven children, who range in age from 22 to 3 (the youngest two children are three years old twins). I asked both of them about the greatest rewards that they have experienced as fathers. Keith described watching his children develop into empathetic and sympathetic little citizens, and also about the culture that his family has created within their home. It is a culture of love, comfort, safety, and, given the wide age range of his kids, “crazy dichotomy between bizarre youtube videos and Caillou.” (For those of you who don’t know Caillou, it’s a show for toddlers, and according to the Huffington Post, “although many kids love the little bald guy and his eponymous show, he’s often the bane of their parents’ existence”). Eli spoke about spending time with Stella, and the routines that new parents develop around the four to five hour cycles that involve eating, sleeping, and a little time for play. Eli also described how his daughter has enhanced other relationships in his life. He mentioned his delight in “seeing how Cheri (his wife) and I complement each other, we really work as a team. We don’t talk about it or think about it, we just do it.”

Both fathers also expressed frustrations that are pretty typical for parents, regardless of ability. Eli mentioned car seats. As a parent who has wrestled with car seats countless times, I couldn’t agree more. (By wrestling, I mean installing, transporting, buckling, inserting children, etc.). Keith summed up the daily challenges perfectly as he said, “the day to day stuff, wondering why my phone went into the toy box.” To that I would add, you know you are a parent if you are grateful that your phone didn’t go into the bath tub.

Keith Jones giving s keynote presentation at the 2017 All Born In Conference – Portland, OR.
Photo Credit: SoulTouchin Experiences 2017

Eli and Keith also conveyed elements of the parenting experience that are unique to parents with a disability. Both of them said that having a disability has enhanced their patience, and patience is a valuable skill when it comes to parenting. They both also conveyed that people are sometimes surprised to see people with disabilities as parents. Eli noted that people respond warmly and positively to the image of Cheri, who uses a wheelchair, pushing Stella in a stroller.  Keith spoke about the lack of expectation for people with disabilities to become parents. He said, “People have this notion of people with disabilities being asexual… and then the notion beyond that is how dare you have a child, what if your child has a disability? Or wow, that’s amazing, I’m so proud of you.” Keith prepares his children for discrimination that they will face in the world, as children of a black father with a disability.

Eli and his daughter, Stella.
Photo Credit: Chris Cardoza

As we celebrate Father’s Day, let’s remind ourselves that we should expect people with disabilities to be included in all of life’s experiences, including parenthood. While we have come a long way since people with disabilities underwent forced sterilization, there is still stigma around parenting with disability. The sterilization debate still rears its ugly head, and parents with disabilities are over-represented in the child welfare system (Lightfoot & Slayter, 2014).  Parenting with a disability should be seen as normal, not necessarily inspirational. Keith’s own children forget that he has a disability. When the twins need something opened (like a juice container), they will put it in Keith’s hand. Then, they remember that Keith uses his feet to complete many tasks, and they put the juice on the floor instead. Keith’s children are as young as three but they recognize that parenting and disability are compatible and normal. Our society can aspire to be as open-minded as they are, so that all people can (if they wish) experience the crazy delights of parenting, even if it does come with some Caillou.