More than a #Meme: The True Meaning of being a Father of a Disabled Child

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A father of a child with a disability is not the same man he would have been as a father of a child without disabilities. Can we help others who will come after us be better prepared? Can we help society be better prepared for who we are and what we can do?

What if we, as fathers of all ages, with children of all ages, with disabilities of all types, would decide to pro-actively break through annoying and hurtful stereotypes about us as men and our children as people? (I don’t know about you, but the next time I am called a “special ed parent” by a principal, as if my role as parent is defined solely by that, I will revolt.)

But there are other stereotypes to deal with first. You know, the ones that constantly appear in media in ways you can probably recite in your sleep. The “inspirational memes” that, while true, often merely serve to replace more serious dialogue about needed change. (It is really cool that the disabled towel-boy was called into the game and threw a 3-pointer. But perhaps we should focus equally on that boy as a student the other 364 days of the year?)

The memes continue. The “unfortunate” family. The “adorable” handicapped child. (Are there ever unattractive disabled children in stock photos?) Can you imagine a fundraiser in the media for a family whose patriarch was unappealing and didn’t radiate enthusiasm? Don’t fundraisers for children of grumpy parents deserve press?

I don’t know about you, but I am tired of these stereotypical messages and images in the paper and on TV. It is nice to make people feel good, but to have no other goal short of making other people feel good — or less guilty — misses the point. These memes can make us all miss an opportunity to affect change.

Disability is a part of life. We would all be better served to understand that. I was at a seminar once, and the leader asked, “Raise your hand if you have a disabled child. Now raise your hand if you have a disabled parent. Now raise your hand if someone in your extended family has a disability. Now raise your hand if you have a close friend that is disabled. Now, raise your hand if you think you could be disabled in some way before you die.” The point was clear. Eventually, we all will deal with some form of disability someday, in some way.

Fathers’ roles are changing. So why is it still a big deal that a father chooses to stay at home to raise a disabled child while the mother works outside of the home? Why do fathers bringing their children to the hospital for appointments still get treated as the “second tier” parent? Roles are changing faster than laws, the courts, the medical system, and our employers are. Faster than some segments of society can react to. Could we dads of disability and our families help affect change that will benefit not just us, but every family?

Dads of disability should have authentic messages, and help the media and our communities focus on images of unity and reality, not fluff and things that make people think, “They are them, and we are us. Thank goodness I am not them!” Not everyone has the skills to engage media, or the time or wherewithal to speak at a statehouse. But all of us have a responsibility to speak up when a child is illegally restrained or controlled in a school setting. To write a letter to the editor to call “BS” when we see it. To stand up for others’ children when necessary and not turn a blind eye. When we mobilize our strength publically as men and as dads of disability, it becomes easier to replace the sanitized, happy-assed, inspiration-porn that often masquerades as advocacy for families like ours after editing by an uninspired or uneducated media.

I dream that whether at the statehouse, the doctor’s office, at home, or at work, we can break through the expected and trite media memes and encourage the general population to think differently about our families and, in my particular dream, a father’s role in our kinds of families. I dream of getting people to understand that disability can happen in any family of anypolitical or any economic stripe. I dream that we dads of disability will help create and participate in systems in our society where fathers can “do it all” at work and at home in support of our children and spouses (just like moms!). I dream that changes will benefit all kinds of families, whether they have family members with disabilities or not.

As women and mothers’ roles justifiably change, there must be a parallel adjustment in expectation and acceptance of fathers’ and male caregivers’ changing roles. Roles can’t change in a vacuum. We men must be there to support women as their roles change. And women must be a part of helping men redefine caregiving and parenting.

I dream that the changing roles of mothers and fathers will allow themboth to powerfully and publicly participate in not just the physical support (food, shelter, clothing) of children with disabilities, but also in their emotional lives and daily care. I dream that dads and moms of all stripes can add to the dialogue and exposure of disability in family life in all forms of media in broader, more inclusive, and more realistic ways. I dream that this will help us all move toward the next phase of addressing disability in our society. Its acceptance as everyday. As typical. As a natural part of life.

This is one of the closing essays in my book, “Dads of Disability™: Stories for, by, and about fathers of children who experience disability (and the women who love them!)” used by permission. © 2014 Gary M. Dietz.

You can learn more about this book at www.dadsofdisability.com or purchase a paperback or Kindle version of this collection of 41 essays for, by, and about fathers on Amazon or search iTunes.

 

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