Lying in bed in a hotel tucked away in California wine country, my husband turned toward me and tentatively covered my hand with his. His eyes were wide and happy and a little teary. "We’ll figure it out," he promised.
Like many fathers who’d just seen two pink lines on a convenience store pregnancy test, he was left a bit breathless — but probably a little more surprised than most. My husband is a quadriplegic wheelchair user, having broken his neck and suffered a spinal cord injury many years ago. He’s healthy and active, but when it came to fertility and fatherhood, we weren’t sure how things would go. Our doctor warned us about the uncertainty of our being able to conceive, at least without expensive and invasive procedures. We were prepared for a long wait and a lot of heartache. But — surprise! — I got pregnant right away without a need for medical intervention. We were thrilled — and terrified. (Did I mention we were still in grad school, living in a shoebox-size apartment and planning a cross-country move the month of my due date for my husband’s new teaching job? Yikes!)
It turns out our experience isn’t too uncommon (save maybe the postpartum cross-country move). There are approximately 12,000 new cases of spinal cord injuries each year, making it one of the most common long-term disabilities, and most SCI patients are men. While many men with spinal cord injuries worry about being able to become fathers, 80 percent of male wheelchair users with SCIs are able to become biological fathers — some with the intervention of assisted reproductive technologies like IVF and some without.
But fertility is just the first step in starting a family with a disabled parent (or parents). While there are many resources available to parents of disabled children, from educational programs to extended networks of support groups, disabled parents aren’t always so lucky. When I started trying to find resources aimed specifically at partners of SCI fathers or disabled parents in general, I was surprised at how little information is out there. Like us, many new disabled parents must feel lost. "What baby products will work for us?" we wondered. "Can we both change diapers? Are there wheelchair-accessible cribs? Strollers? If so, could we afford them? Would pediatricians and teachers treat my husband as an equal partner and authority in our child’s life?"
Everything was up in the air, it seemed, and it was rough to find any definitive answers. Still, I was sure we could handle it. By definition, life with a disability often requires a DIY approach, and parenting — which demands flexibility of everyone — is no exception. I turned to fathers with spinal cord injuries and their (primarily able-bodied) partners to find out how they successfully navigate parenting. Every parent with a spinal cord injury has a different set of physical abilities — some might need a lot of assistance, others very little or none at all — and many fathers have found creative ways to work around challenges. Since mass-marketed baby items like babywearers and strollers aren’t generally made with adaptations for disabilities in mind, handiness is a helpful trait.
Sherry P., whose husband has been the primary caregiver to both of their children since their son was just 3 months old, cherishes that trait in her husband, the father to their two children. "My husband is very creative and resourceful — we made a harness out of rock-climbing webbing with a handle on the back so he could scoop the kids off the floor when they were crawling and put them on his lap!"
One father with an SCI agrees with Sherry that one-on-one time is especially important for fathers with disabilities. "I was terrified to be left alone with our baby for the first time, but knew it was necessary and that, with some flexibility, it would be OK. Turns out, we had a great time, and I now cherish one-on-one time with her."
Like other parents, but to a different extent, a spirit of creativity and a positive attitude toward problem-solving are essential for fathers with SCIs or other disabilities and their partners (disabled or not). Family power dynamics can also be tricky when one partner is disabled and the other isn’t. Negotiating parental roles is a challenge for any couple, but there’s even more of a learning curve when one parent is a wheelchair user, as the everyday demands of parenting can disrupt the flow of communication or create a situation in which an able-bodied partner becomes the default authority figure.
Nina W., mom to three kids ages 9, 5 and 3, says that she was afraid her son would disobey her husband or not see him as an authority figure. Offering advice to able-bodied partners of disabled fathers, Nina argues that backing up your spouse is key. "My best tip is to be open and honest with your partner about parenting and discipline, but don’t overpower your spouse… You have to be a team more than ever."
Some disabled dads are worried that their significant others will question their ability to parent effectively. Anne, a mom to a 13-month-old son with her husband James, says that the reactions of the public can sometimes feel stigmatizing or condescending, saying, “A lot of people do that patronizing pity face when they see us together as a family.”
One father with a spinal cord injury agrees, citing others’ assumptions about disabled individuals’ abilities or inabilities as the primary kind of discrimination he’s faced as a disabled father. “It's mostly pretty subtle and in the form of people being ‘curious’ about how we accomplish parenting tasks and often offering unwanted 'help.'" While requested help might be appreciated, the presumption of someone’s effectiveness or lack thereof as a parent because of how they move in the world is frustrating for many.
When asked about the benefits of parenting with a disability, many parents mention the development of patience, empathy, open-mindedness, a sense of self-sufficiency and confidence and respect for differences in both themselves and their children. Kristen Sachs, a blogger who has written extensively about her family’s SCI parenting journey, attributes several positive aspects of her daughter’s attitude and development to her husband’s disability, which has helped them both develop deeper emotional intelligence and maturity. "My husband has a lot of patience with our daughter — certainly more patience than I do. He is the parent who most often will get her to slow down and focus just by using his words. He explains things very well — from ideas on how to help her through an emotional time to instructions on how to complete a physical task."
As I write this, I’m due in six weeks. Like many fathers-to-be, my husband is at once excited and frightened out of his mind. But with an added stroke of the qualities that help any parent be successful — dialogue, flexibility and a willingness to mess up until you get it right — I’m confident we’ll do just fine.
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