By Mark E. Smith
When we’re very young, we dream of having “heroic” careers as police officers, doctors, nurses, and teachers – that is, careers where one notably helps others beyond oneself.
However, once grown, we can lose sight of our intrinsic heroic abilities, living in a culture where many of our roles are defined as anything but heroic, living meaningful but admittedly common lives, where we’re not fighting on the front lines or performing heart transplants. Yet, we still have the ability to serve as heroic in our everyday lives: As parents.
If you think about the best parents, they truly are heroic in the eyes of their children. The best parents put the family’s needs before their own; they demonstrate the willpower to make tough decisions and set boundaries; they live by devout morals and ethics; they persevere; and, most of all, they demonstrate in deliberate ways every day that they love their children, showing a clear belief in their children’s abilities to grow up and become a remarkable individuals. Indeed, being a hero doesn’t take an esteemed career, money, or fame – just dedication as a parent.
As one with a disability, and as a parent, I’ve learned that disability not only effects our ability to be heroes in our children’s eyes, but often serves as a make-or-break situation for the role. Countless times, a young person in his or her teens or early twenties has come up to me at an event, noting that his or her parent has a disability, and I always ask, “How’s your parent doing?”
The child’s response is usually unmistakable, and never middle-of-the-road. He or she either lights up with a smile and says, “Great,” or he or she looks down at the ground and quietly says, “Not so good.”
As we’ve talked further, the optimistic children always note how despite hardships, their parents with disabilities remain remarkably positive and involved in their lives, whereas the somber children express how disability has removed their parents from their lives in many ways. What’s strikingly obvious in these conversations, though, is that the conversations aren’t about the parent at all; rather, these conversations are truly about the child.
No matter the age, children look to their parents for examples on how to live, how to cope in the complex world around them. When a child sees his or her parent challenge disability with resilience, perseverance, and optimism, that has a profoundly positive affect on the child’s self-image and life skills. A friend of mine lost both legs and one arm in an automobile accident when his two daughters were ten and twelve. The two girls watched as their father went through unimaginable changes, including the scary realities of rehab, which hits home the true impact of one’s injury toward daily living with profound disability. Yet, my friend kept his daughters close to him through every moment of the process, reassuring them that while life was going to be different, it would ultimately be alright. As the years passed, the girls saw him return to work, they saw him helping with their homework at night, they saw him coach their soccer team, and, most importantly, they saw him just be Dad. The girls are now in college, and are doing exceptionally well. Their dad’s disability, it proved, helped them see perseverance, resilience, accountability, and humility in action – traits that can only be modeled by a mindful parent. There’s no doubt that as a father, he’s a true hero to his daughters.
See, when a child witnesses such pronounced parental dedication, it unquestionably builds tremendous esteem within the child. A child ultimately takes life queues from a parent based on what’s modeled, not what’s said, where a parent’s proven perseverance, resilience, accountability, humility, and love creates the healthiest of child. Add to this a parent’s positive approach to disability – which emphasizes the aforementioned traits – and a child recognizes an even greater hero in his or her parent, where children like those of my friend intrinsically know that Dad’s done it, and so can we.
While a parent’s healthy approach to disability can inspire a child’s life to remarkable heights, an unhealthy approach can devastate it – forever. If there’s one aspect that a child needs in daily life, it’s positive forms of assurance and stability. When a parent is upset, a child is upset. When a parent is fearful, a child is fearful. When a parent can’t cope with life, a child has no way to cope with life. And, when a parent allows disability to destroy his or her life, it also destroys a child’s life.
Truly, among the most destructive paths that a parent can take is to use his or her disability as an excuse to allow out-of-control emotions and circumstances to enter the family’s life. Such circumstances strip a child’s sense of security and leave him or her void of healthy coping skills. What’s more, children naturally assume a role of caring, wanting to “fix” their clearly emotionally broken parent, and when a child can’t, a child experiences tremendous guilt. What a parent’s inability to cope with disability adds up to, then, is grim statistics, where no parental guidance or coping skills, compounded with a sense of shame and guilt within the child, fosters unhealthy life choices in children, teens, and adults alike.
I’ve seen it play-out first-hand, time and time again, where the children of parents who tune out due to disability end up virtually lost. My initial realization of this fact began in the fourth grade, where an able-bodied classmate’s dad was recently paralyzed from the neck, down, a very high quadriplegic. We lived in the same neighborhood, so my classmate and I hung out together. I remember witnessing it month by month as his parents’ marriage disintegrated, and his dad became a profound substance abuser, living in squaller, with no concern toward his son. In fact the situation was so bad that my own father, an alcoholic who was in and out of my life, actually intervened in my friend’s dad’s situation, moving him into a nursing home when he was on such a downward spiral that his life was at risk. I remember often going with my friend to see his dad at the local nursing home after school, and his dad would just stare at the television, motionless. “Tell your mom to bring me cigarettes,” is the only thing I ever remember him saying to his son.
My friend’s mother was a successful business woman in our town, and by all accounts, she did the best that she could toward raising my friend alone. My friend and I ended up losing touch in junior high when I moved to a neighboring school district. However, during my senior year of high school, I ran into my old friend at a party, and he was a complete mess – drunk, stoned, and not graduating like the rest of us. After a while of catching up, I, of course, asked how his dad was, and he explained that his dad had died two years earlier. And, what he said next haunted me even then: “I wish I was there for him more. I feel like Mom and I let him down.”
Think about the profoundness of that 17-year-old’s statement: His father completely dropped out of life due to disability, leaving his son feeling entirely responsible, clearly unable to cope. Do you really think that that young man went on to the healthy, happy life he deserved?
Of course not. His father used disability as an excuse to leave his son full of shame and guilt – a devastating legacy.
Well into my disability-related career now, it saddens me how often I encounter teens and adult children alike whose parents’ inability to cope with disability is destroying the children’s entire sense of self-worth. Sure, the dysfunctional parents always grab onto the excuse that they didn’t choose disability, that everyone in the family is a victim, especially them for physically suffering. But, I’m bold enough to tell such parents that their self-centered nature isn’t about disability, but about poor parenting, where the only victim is the child. In no uncertain terms, parents with disabilities need to get over themselves and their disabilities, and simply be parents.
The fact is, disability does not dismiss parental responsibility, nor does it give any right to place any additional emotional burdens on one’s children. Someone questioned me on this stance, asking, so then how does a parent who’s emotionally struggling with disability realistically not let it spill over to his or her child?
My answer is simple as it gets: Your child’s needs must come before your own. If you feel that you’re struggling with coping skills, you don’t let it spill out on your child; rather, you must act as a grownup, and seek healthy outlets among other adults and professionals. And, along the way, you take accountability for your actions, form healthy coping skills, demonstrate perseverance, and build dignity – traits that you should pass onto your child through modeling positive behavior every day.
Make no mistake, the equation is strikingly clear: When we place parenting above all else, our children excel, but when we put our disability above all else, our children suffer. And, there’s no in-between. Disability isn’t easy, and neither is parenting. However, when you have the integrity to put your child before your disability, and make the daily effort to model perseverance, resilience, accountability, humility, and love, you live up to your responsibility as a parent – that is, you become a true hero in your child’s life.
PowerchairDiaries 
I often think of divorce as a disability. Or at least the parents often treat it as their disability. I provide supervised visitation services where ordered by court and often watch children struggle to make sense of, experience feelings of guilt and behavior changes mostly due to families subjecting their children to their own victim mentality. We believe in parents putting their own ego aside as well and hope to be able to create this change within the system of family law. Atty’s fight for their clients, parents act as if they are the victim and children get left out to deal with it on their own. It becomes a viscious cycle. Thanks for presenting your story. It is very much appreciated.
My husband has no problems with my childrens disabilities (Autism and CP) but since I was diagnosed has had trouble dealing with mine.
He has been resentful of his loss of me is the best way to put it. I was diagnosed three years ago. We just started marriage counseling. Any advice for helping a partner come to terms with a disability he doesn’t know how to cope with?
I do not want my children to suffer. My husband says he was raised that disabilities are a weakness and he has to get up and work no matter how bad he feels for his family. So it is weak to be less than 100 percent. Of course he doesn’t feel that way about the kids. He is a very loving father. He did experience grief when our oldest was diagnosed with CP, but so did I. He did not really talk about his feelings when our youngest was diagnosed with Autism.