The following is excerpted from the book, “A Celebration of Family: Stories of Parents with Disabilities.” Published in 2021 by the Advocado Press and the Center for Accessible Living.
Chapter 7
Keith
“Don’t fill your head with worries and what ifs”
Keith with his daughter, Kayla, and his wife, Shannon
I am married with a seven-year-old daughter, Kayla. My wife, Shannon, and Kayla are not disabled. I have a family history regarding disability. I have a congenital disability of bilateral severe clubfeet. That’s the first thing that I’ll list and it is inherited. One of my Dad’s brothers, my uncle, also had that condition and one of my Mom’s uncle’s had it. I also live with general anxiety disorder and major depressive disorder. I have chronic pain due to my clubfeet. These disabilities are all involved in my parenting and in my family interactions.
When my wife and I were talking about having a child, I was not yet diagnosed with my mental health conditions, but I did obviously have clubfeet. I had over a dozen surgeries as a child. I continued to have chronic pain and issues related to the clubfeet. I wear below the knee AFOs (ankle-foot orthotics). The disability was definitely something that went into our decision-making. We discussed it. I researched it. Luckily in the age of social media, I was able to reach out to people with the same disability. I’m a member of a clubfoot Facebook group. I discussed it with some people on the group, asked for some information, found statistics of the likelihood of a parent passing it down. Ultimately, we made the decision that, while we all want our children to be as healthy as possible, to a certain extent my clubfeet made me who I am and I don’t feel I turned out to be too bad of a person. Even if our child were to inherit club feet, we would still love her, of course, and do the best by her and give her a good life. It would not be necessarily the most defining thing in her life as it hasn’t been in mine.
We had a daughter. I think club feet is more prevalent in boys, but girls can have it. The soccerplayer, Mia Hamm, was born with clubfeet, although a much less severe case than mine. I would say she adapted to it pretty well. Nonetheless, our daughter was not born with the condition.
One of my bigger challenges in being a parent as far as my physical disability goes was when my daughter was a toddler who in a running phase. By the time she was, I don’t know, three, she could outrun me. I always had a concern if we were in the front yard alone she could take off and I couldn’t catch her. Then she went through about a six-monthphase where, in any store we were in, she wanted to be out of the cart and down on the floor. As soon as her feet hit the floor, she took off running. I would tell her, “You can’t run, I’m not going to put you down if you are going to run.” She would say, “No, I won’t run, no, no, no,” and then boom, she’s gone. When we were at the grocery store or the department store, my wife would be there, too. It only took one or two times of her running and us looking at each other and me saying, “you gotta chase her.” It just turned into a routine. She hits the floor and takes off, my wife and I would say, “We’ve got a runner,” and she goes after her. As far as adapting to that, I found that Walgreens is small enough with enough corner mirrors, that I could let her play her game safely and chase her around the store and let her get it out of her system.
My chronic pain offers other challenges that limit my activities. Going to the zoo is a pretty normal thing for a parent to do with their child, but I have extra considerations. I tire easily. I have greater pain the longer I walk or stand. We went to Disney World at New Year’s and I ended up renting a scooter. It was probably the best thing I ever did at any park in the world. Since then, I’ve rented scooters at the zoo which has been nice.
With my mental health, the biggest challenge was when I first started having panic attacks. I didn’t know what they were. I thought I was having a stroke and it was happening every couple of days. I didn’t know what was going on until I ended up seeing a neurologist and a psychiatrist. It was difficult, because when I had the panic attacks, it affected my entire body and then I would have had a terrible migraine for at least the whole day. I would be incapacitated, there were days where all I could do is lay in bed. This brought on feelings of inferiority and inadequacy that went with not being able to take care of my child and having to rely on my wife to do everything.
But I really should start at the beginning with my mental health. I wasn’t diagnosed with a mental illness until my thirties, but I believe I may have had one since I was in high school. Looking back, there were signs from high school through college and in young adulthood. I dismissed it all. “My life’s too good to be depressed”. “I’m depressed, yeah, but not, like, clinically depressed.”
My uncle, who also experiences clinical depression, was the Poet Laureate of his home state. He wrote, “why does man alone get out of bed?” I asked him what he meant by that. He said it’s a description of his depression. It was so true for me, but I still didn’t make the connection, even in the beginning of college.
I was a cutter briefly in my freshmen year of college. Not many people know that because when I tell people, they get real weird. There’s so much stigma around cutting. I think It’s important to normalize it. I don’t mean normalize doing it, I give it zero out of ten, I would not recommend it. I just mean we shouldn’t act like it doesn’t happen, or that it always means suicide. It was freshmen year, first semester, and I didn’t have many friends. I think I still had undiagnosed depression and I drank. A lot. I cut to feel alive, something… ANYTHING. I wasn’t suicidal at all. I never cut again, after that semester.
Speaking of being suicidal… have you ever been suicidal? No? You ever been driving down the road and imagine if you just drove off the edge? High speed on the highway into a ditch? Imagine what the world would be like without you. An escape from pain and suffering. To sleep no more. I thought it was just my overactive imagination. Turns out I may have had “passive” suicidal ideation in my twenties, but I never actually entertained trying to kill myself.
With proper medication and better understanding of my illnesses, I’m doing pretty well now. No panic attacks. Some depression, but not as bad. No cutting. No imaginations of death. I’m not saying have a baby for an extra protective factor. I’m saying that if suicidality is stopping you from having a baby, don’t let it. My daughter is my BEST protective factor. She makes me want to take my medicine and be healthy.
I can’t say that I faced any specific instances of bias or discrimination as a parent with a disability other than when she was in her running phase and people gave me dirty looks because a little kid was running around in a store, but I think that would probably happen to any parent. My family has always been supportive. My wife certainly picks up the slack when needed. As I mentioned earlier, I’m a member of a group on Facebook of people with club feet. That has been helpful at times. I just try to be my best self, be my healthiest self so that I can be there for my family. I take my medicine for my mental health and I have a leg brace that helps me walk for longer distances and stand for longer periods of time. That improves my quality of life so I can be there for my daughter as much as I can.
Kayla learned early on to adapt to some of my limitations. For example, with my anxieties would come migraine headaches. Unfortunately, anytime I get a headache, it turns into a migraine even if it’s not anxiety related. Kayla learned that when we said that Daddy’s getting a headache, she had to be quiet. For a four or five-year-old to tone it down, that is kind of unique.
I would tell a person with a disability who is considering parenthood don’t fill your head with worries and what ifs. There are certainly people and communities out there that can help with adaptations, accommodations and suggestions. Before becoming a parent, I knew parents who had quadriplegia and parents who had other disabilities. I had that perspective that it could be done. Role modeling was already there for me, but I’m sure there are plenty of people out there that don’t have those people in their lives that they’ve seen do it already. It’s like anything else, you read. You research. You rise to the occasion.
It is absolutely more difficult to be a mother with a disability than a father with a disability. Society still has this view that mothers are the primary caretakers. As a father, there’s less expected of me, although in our household, we share responsibility. People will question a mother’s ability to be a parent more than they will mine. If Shannon and I were taking Kayla into a building, people won’t give it a second thought because the mother is there and is able-bodied. Women with disabilities are much more vulnerable to criticism.
As I said earlier, Kayla knew from an early age that when I was getting a headache, she had to be quiet. Even as a little two-year-old or three-year-old walking around just like any other kids, she put my shoes on and walked around being Daddy, even though one has metal bars on it. Like there’s nothing to it and she knows that I can’t walk as long as other people and I need to take breaks and all that stuff. Thensomething happened a few months ago that kind of took me back. She is seven now. I said something offhand about having a disability. And she looked at me and said, “Daddy, you don’t have a disability.” I thought what in the world is this kid thinking. She knows all this. And yet she still didn’t connect the word with me. We have made an effort of having inclusive books in the house like a princess in a wheelchair and all this stuff. What she said just blew me away. She seemed to have somehow developed a negative connotation about disability. The word disability to her at that point in time was kind of a bad word. Her Daddy couldn’t have one of those. I sat down and I talked to her and I told her of course Daddy has a disability. I wear this leg brace and it helps me. I can do things other people do I just do it differently. I had to kind of address that and turn it upside down and say this isn’t a bad thing. It’s just that everyone’s different. It was really interesting to get that feedback from her. She picked up on the negativity related to disability outside of the home after all those inclusive books and everything else and despite knowing Daddy’s friends in wheelchairs. Somehow, society’s negative attitudes had penetrated into her way of thinking.
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