In rehab, I was cocky. Newly paralyzed at T12, I was determined to beat this new challenge and be the great shining star of rehabilitation. I took every new experience head on. Transfers? No problem. Rickshaw? Arm bike? Bowel program? I’m the champ. Then my wise occupational therapist handed me a coffee cup and told me to roll across the room with a cup of hot coffee. Ever the show-off, I put the cup between my thighs and started out across the floor. “Wait!” Andrea said, “Remember? It’s hot. You’d be burning yourself if that really were hot coffee in that cup.”
Since I’m now a mother, I know the experience of raising children can be akin to the above story. You can start out cocky, but eventually you have to slow down, re-assess, take your time and learn new ways of doing things. Learn from others. Think it out.
Moms and dads share the same territory, but they occupy it differently. I know the mom and disability story. But I wondered what happens when you mix testosterone into this role, a role that I know to be filled with sacrifice and humility — not your stereotypical strong male traits. So I went looking for the story behind dads and disability.
The Single Dad
When it was discharge time, Greenwood’s mountain home still wasn’t ready for him to move back to. The discharge coordinators recommended a skilled nursing facility, but how could one be found that would allow a 9-year-old boy to make overnight visits?
“That was my priority,” says Greenwood firmly. “When they wouldn’t let Kyle stay, I wouldn’t stay there, either.” Fortunately, Greenwood’s insurance company came up with a furnished apartment close to Kyle’s house, a temporary fix while his house was being renovated.
“At first Kyle said that he didn’t want a paralyzed dad,” Greenwood says. “But he sure liked riding around on my lap. I just tried to show him that there was nothing to be scared or nervous about. Crap happens, and you persevere.”
Greenwood has a lot of persevering ahead of him, and being a responsible, dedicated dad — in addition to adjusting to his new way of living — will be the biggest challenge of his life.
The Sometimes Full-Time Dad
Becoming friends again with Shannon has made it easier for Storms and Ashley to continue their relationship without too much change. Storms can still pick up Ashley after school, take her to her karate and fencing classes. Being a property manager, he has always had a flexible schedule. However, some things have changed.
“We used to tear around the house, playing. Sometimes she’d crawl into bed with me at 4:30 in the morning. Now I use a hospital bed, and I have dialysis on Mondays, Wednesdays and Fridays,” says Storms. “Ashley has adapted really well. It has actually been harder on me than on her. Just try to meet women when you always have a nurse around with you.”
Storms has tried to keep life as normal as possible for Ashley. He is still the disciplinarian, he says, describing her mom’s version of parenting as “emotional,” while he doesn’t give in. “I use the dictionary,” he says, explaining his fathering style with Ashley. “I make her write definitions of words, from attitude to respect.” On the rare times when that doesn’t work? “There’s always the ping-pong paddle,” he says, grinning.
The Teaching Dad
David Lowy is a traditional father, untouched by divorce. Despite being a C6-7 quadriplegic from an unfortunate bridge dive in 1987, he is the father of three children — 9-year-old Analise, 4-year-old Aaron and 4-month-old Dylan. He is also a third and fourth grade teacher. He has never allowed being a quadriplegic to be an excuse for anything in his life.
Still, being a quadriplegic is a fact of life. When Daddy is home with the children and needs some help, 9-year-old Analise pitches in. She helps with changing Dylan’s diaper, a difficult job for Lowy, who lacks complete use of his fingers and opposable thumbs. “However,” says Lowy, “The kids have always seemed to know when I was the one taking care of them, and they would go easy on me. Dylan doesn’t wriggle around as much when he knows Daddy is trying to change his diaper or get him dressed.”
Andrea, Lowy’s wife and a former occupational therapist, does the cooking and the majority of the day-to-day childcare. Again, it appears that Dad’s job is to be the disciplinarian.
“My best advice for raising children is to love them, discipline them and be consistent. And that is the hardest thing to do, in the classroom or at home,” says Lowy.
Lowy and Andrea paint such a pretty picture of domestic bliss that I press a little harder. After 19 years in a wheelchair, what really bugs Lowy?
“My biggest frustration with being a dad in a wheelchair is not being able to do the things I used to love to do — mostly working with my hands. As a dad I want to be able to play baseball with my son. I can throw the ball, but it’s not like putting on a glove and really throwing it. I can do it, but it’s more … primary.”
The Supposed-to-be-Macho Dad
Chairez wasn’t ready to come home. “I didn’t have the confidence in myself that I could really make it out there. I was really afraid to leave the hospital bed, where I could move around by myself. I never thought I could be independent in a regular straight bed.”
Asked about the parenting role models he had, this soft-spoken man remembers: “Growing up, everything came through my mom. I remember once I was protecting my dog and my dad started hitting me with a stick.” But fate had something else in mind for Chairez. “That would have been how my kids were raised if I hadn’t gotten injured,” he says.
Still, Chairez claims to have a bad temper. “It takes a lot to irritate me, but once I get mad, I do a lot of yelling. After the accident my kids figured out right away that if they run certain places, I couldn’t get to them.”
Like a lot of dads, Chairez went overnight from breadwinner/distant dad to stay-at-home, hands-on dad. He can definitely see the value of the latter, though he admits that he is the exception among Latino males.
“It’s a whole lot different now. I am more involved helping with the kids — homework, chores, etc. Before, I was concentrated on my job, doing what was expected of me, even though I never saw my kids and I would come home exhausted. It wasn’t until I had my accident that I could focus on loving my kids more. Now I drive them to school and pick them up. I sweep, do laundry and wash dishes.”
What really motivated Chairez, along with many who were injured in the past 10 years or so, was the parenting example set by Christopher Reeve. “Here’s this guy who is worse off than I am. I don’t have anything wrong with me, compared to him.”
His wife helps Chairez a great deal. “She backs me up, doesn’t let the kids disrespect me,” he says. “She encourages me to use my words, to get their trust and respect. I wasn’t raised as a talking person, but once you are in a wheelchair, you don’t have any choice. The disability cuts off a lot of your choices in how you can act. Words are the main thing you have left.”
Our final subject, Dan Burns, had polio at 18 months. After the long process of recovering from that, at age 46 the effects of polio returned as post-polio syndrome, weakening his legs once again. New to the wheelchair, he met his wife, who also uses a wheelchair, and who is the mother of two children — Nick, 7, and Hilary, 10.
“Sure, there are unique challenges when you are the strong man placed in a stereotypically weak role. The father figure is supposed to be the stern disciplinarian, the baseball coach, and the guy with all the answers who can fix anything. How do you do all of that when you are sitting in a wheelchair? How do you get and keep the respect of your wife and kids when they see your weaknesses every day?”
Finally, we hear it directly from the man: wheelchair equals weakness. Asking for help implies weakness. Not working, staying at home with the kids, suggests weakness. But if you were to ask the wives and children, chances are they would not agree. Perhaps the misconception is due to the all-pervasive cultural and gender stereotype. But it is not a reality. I ought to know. Aside from being a wheelchair-using mom, I am also the wife of a wheelchair-using stepdad — none other than Dan Burns.
Themes, Strategies, Advice
An ongoing theme I heard from the fathers is the need to overcome any impact that their disability may have on their children. Whereas a mother in a wheelchair may encourage understanding and empathy, the men emphasize overcoming adversity, continuing to work hard, and fostering the attitude that everything is fine, just fine.
Looking back on the expressions of frustration of the fathers, and the hard-earned wisdom, we can revisit the metaphor of carrying hot coffee from a wheelchair. Go too fast, you get burned. It’s no use to refer back to what worked as a nondisabled person. Slowly, think it through. Try new things. Watch and see how others are doing it.
Remember David Lowy’s advice: “Love them, discipline them and be consistent.” And don’t forget John Storm’s words of wisdom: “Keep the toy store close and the ping-pong paddle closer.”
And stepdad Dan Burns’ advice? “Rope, duct tape and a loud roar!”