Disability in Families Archives

Why My Dad Isn’t a Hero or a Saint: A Father’s Day Tribute

Posted on June 15, 2014August 12, 2021 by Emily Ladau

Whether they admit it out loud or not, people always wonder how my dad, Marc, “does it.” I can hear it in the tone of a person’s voice; I can see it in their facial expressions. How does my dad handle being the able-bodied husband and father to two disabled women? Everyone from family members to complete strangers have remarked how amazing he is and how lucky my mom and I are to have him in our lives. On more than one occasion, he’s even been called a hero or a saint.

My dad is neither of those things to me, though. And before you call me callous or ungrateful for saying that, hear me out.

I decided to come up with another way to describe my dad. I’ve recently taken to calling him Charlie-Marc, as in a reference to the title “You’re A Good Man, Charlie Brown.” It struck me to call him that one random day after he’d gone out of his way to drive me somewhere (since I don’t yet have a vehicle of my own). I feel strongly that there’s no better or more accurate description of my dad than “good man,” because it is something he can live up to every day. You see, to perceive my dad as heroic or saintly is actually rather unfair. Consider this: it may seem like a compliment, but by saying this, you actually manage to relegate my mother and I to a status of lesser beings than my dad while simultaneously asserting that my dad’s only bit of worth lies in being a caregiver. Neither of these are true.

Yes, he must go above and beyond the typical responsibilities of a father at times for reasons related to my physical limitations, but this is not all that defines his role as my dad. There are a million other reasons aside from his help and care that demonstrate time and again why he’s a regular old great guy. My dad is fiercely loyal and dedicated to our little family. He’s hilarious, and pretty much always up for a little silliness to brighten the mood. He’s always ready with words of wisdom and a surplus of hugs and affection when I need it most. But he also has tough days, plenty of aches and pains, and good old-fashioned cases of the grumps. He is real and he is human, and to me, that’s worth so much more than being a hero or a saint.

I never let a day go by without telling my dad that I love him, but especially today, I want him to know that I love him not just for all he’s done for me and my mother over the years, but for who he is – an awesome father and an all-around, bonafide good man.

I love you so much, Dad! Happy Father’s Day.

A Mother’s Day Reflection on Mother-Daughter Disability

Posted on May 11, 2014August 12, 2021 by Emily Ladau

After spoiling my plans and letting my mom, Ellen, in on her surprise Mother’s Day post, I realized I had no idea how to live up to the promise of writing one. How could I find words that explain what it means to have been raised by someone whose being is connected with mine down to the very structure of our bones? But in her typical style, my mother came through with advice as I pondered this, giving me the insight I needed to get my thoughts in order. When she was in college, she told me, if she found herself struggling to begin writing on a tough topic, she would open her essay by addressing that struggle.

It is the concept of struggling that resonated with me in this case. I’m not one to sugarcoat things, and so there is no denying that as a disabled mother-daughter pair, our lives are challenging both individually and together. We are often the literal embodiment of the blind leading the blind, or rather, the mobility impaired leading the mobility impaired. Most of the time, this works out just fine for us, but double the disability leads to everything from a dramatic comedy to a regular old comedy of errors as we help each other.

And so I think back to a comment my mother once heard being made about us when I was a baby – a comment implying that these slightly unconventional lives we lead were not worth living. A woman who was behind my mom while she was holding me at an event said “Look what that woman did to her baby. She must feel so awful.” Though I wasn’t old enough to process this comment, the story sticks with me – not because this horrible woman was right, but because every day, my mother’s life is one that would put this woman in her place a thousand times over.

I know my mom has grappled mightily with guilt because our disability is genetic and she passed it on to me. I know my mom wishes our situations could be different. But to the woman who tried to hurt my mom so many years ago without knowing a thing about her, I want you to know that not a day in my life have I held my disability against my mother. It might not make life easy for either of us, but the fact that we share something as physically and emotionally personal as our disability has made me feel lucky in ways that transcend full explanation. She is my best friend, the kind who understands me when I’m at a loss for words because she, too, has been where I have been. She has been where I have been on levels that cannot even be seen by the unaided human eye, right down to the double helices of our DNA. I wouldn’t trade one bit of our experiences for the bond we have always had between us.

I treasure this bond because it is so deeply real. In fact, it’s occurred to me in recent months that I have moved beyond views of my mom as a hero or a role model, because those are concepts that just don’t cover how I feel. My mom is genuine, and honest, and flawed, and beautiful, and intelligent, and dedicated, and weak, and strong all at once. She is human, and she has shown me every day not how to defy circumstances, but how to make things work with every part of our reality. And to me, there is no better way to be a mother.

So, Happy Mother’s Day, Mom! For every part of who you are, know that I love you more than anybody can.

Guest Post by Ellen Ladau: Mother and Daughter – Same Disability, Different Experiences

Posted on October 8, 2013August 12, 2021 by Emily Ladau

When contemplating who to invite to write the first guest post for Words I Wheel By, I didn’t have to search any further than inside the walls of my house. I knew right away that asking my mom, Ellen, to write a post would provide a valuable new voice to my blog. If you’ve read some of my previous posts, you’ll know that my mom and I both have the same disability – Larsen syndrome. Because of this, and for so many other reasons, she is the person who understands me best. Being a disabled parent of a disabled child, my mom has unique perspectives that I’ve always found to be a guiding light as I navigate through my daily life. She taught me the importance of self-advocacy and she has been my editor- and conversationalist-in-chief for all things related to disabilities and my blog. Together, we try to educate people about our disability, equality, and acceptance. And while I didn’t want to edit her words, my mom is far too modest about the role she and my dad play in my life. They are the most amazing parents I could ever ask for. As you’ll read in my mom’s first post, we have so many disability-related experiences in common, and yet our lives have also been quite different. This is a definite sign of how disability rights have changed over the years.

Even though I am 52 years old, I do not think I have ever spent so much time pondering disability issues as I have since Emily, my daughter, started this blog. The conversations we have had before, during, and after she writes her posts have been illuminating and have further reinforced how her experiences growing up with a visible physical disability have been very different from my own.

A little family history might be useful now. My parents are unaffected by Larsen syndrome (LS); same for my older brother. But I have a younger brother who like me has LS. It was his birth that led the doctors to suspect a genetic disorder. However, once our anomalies were diagnosed as LS, our family was assured it was a recessive disorder. This means that both parents must have the defective gene for the condition to be passed on to a child. Now flash forward to when I became engaged to my wonderful husband Marc: we once again consulted with the same genetic specialists who told us that the gene for LS is so rare that we would not have an affected child. But at my twenty-week sonogram with then fetal Emily, the telltale signs of LS were detected and we knew that our future as a family would again be forever affected. Only then did the doctors realize that the LS affecting my family was really a dominant genetic disorder.

I am not going to lie – I was emotionally devastated when I knew Emily would face the same physical and emotional challenges that my brother and I did as children. And truth be told, Emily has had to face even more hurdles and challenging surgeries such as cervical spine fusion when she was 17; she spent much of her senior year in high school in a halo used to stabilize her head and neck while it healed from the extremely risky operation. But incredibly she has matured into a much more positive, confident, and outgoing person than I am. While it would be wonderful to think her Dad and I can take all the credit for her successes, I think we truly owe a debt of gratitude to all the disability advocates who are responsible for the ADA and all the other programs and services for individuals with disabilities that resulted from passage of this landmark legislation. Because of things like curb cuts, accessible bathrooms in public places, and accessible public transportation, people with all kinds of disabilities are much more visible in all our daily lives. When I was growing up, other than my brother, we only regularly saw one other boy with a visible physical disability.

In addition to the benefits of the ADA, the development of the Internet has had a profound effect on how people with all types of disabilities can communicate today. When we were kids, we only knew of one other person with our orthopedic condition and this happened by a stroke of good fortune: I was perusing the TV Guide one day and saw an ad for the TV show ZOOM which was featuring a girl with LS. We had to write to the TV station that produced Zoom to ask that they contact the girl and her family to see if they would be interested in contacting us. They were, and a flurry of letters soon went back and forth. Today, I am friends with this woman on Facebook, as well as being connected with many other people who either have LS or are the parents of an affected child. The ease in which people with all types of conditions can exchange essential information and provide support via Facebook, Skype, etc. makes having a disabling condition so much less isolating.

While there is certainly still much work to be done, as Emily shares in many of her blog posts, having a disability no longer precludes participation in the usual childhood recreations or adult occupations. For example, new playgrounds are being designed to include wheelchair access so all children can interact just as all new public construction projects (and many private ones as well) follow the principles of universal design to maximize the population of people who can enter and conduct the business of daily living. And with the continued efforts of advocates such as my wonderful daughter, the sky is the limit as to what can still be accomplished!