Michael and Mommy Make a Powerful Team

by Shirley J. Davis

When Michael came into my life, I had been using a wheelchair for seven years after a stroke. Although normally associated with the elderly, strokes at a young age are common in my family and I had become the latest victim.

At first, life with Michael wasn’t hard at all. I changed him, fed him, and loved him, relishing having a child of my own. However, when he began to crawl and then walk, life became much more complicated.

Michael had to learn not to get in the way of my wheels, and I learned to be on guard for his sudden movements that could get him hurt. When he became a toddler, I feared he would get away from me outside our home, so I bought a child’s safety harness. People looked at me oddly, perhaps believing I was being over cautious or cruel. If I was, I do not apologize because my son has not only survived but thrived to become the ripe age of four.

Of course, not all life with Michael and the wheelchair has been hard; there have been plenty of fun times, too. One example is when Michael first began to ride on the back of my wheelchair standing on my roll bars. He would squeal with delight as I rolled quickly down the sidewalk or around the apartment. We have built tents using my wheelchair as the frame and spun around in circles, he on his feet, me in my chair, until we were both dizzy.

One day, when Michael was three, we were attending a family gathering where there were other small children. One of the cousins, who was around five years old, began staring at me, obviously confused. He approached me and asked me why I was in the wheelchair. I smiled big and answered that I had been sick and that I bet he has wheels at home too. That seemed to satisfy his question, and he ran off to play. When I looked around at Michael, he seemed upset. I called him to me and asked what was wrong. He answered that he didn’t like his cousin staring at me. I kissed him on the forehead and explained that not everyone had a mommy who used a wheelchair—a fact that he had never considered. Before long, he was back playing with the other kids, and I smiled to myself at his innocence.

There are some limitations on where Michael and I can go. Even with the ADA requirements for ease of access, some things such as going to a county fair are too difficult for me to do. The huge cables of wires lying all along the fairway are impossible for me to navigate in my chair.

One evening, my brother took Michael to our county fair. Upon his return, my son spoke avidly about how much fun he had while riding the rides and playing fair games. I couldn’t help but feel bad as I so much wanted to be part of the fun.

I wouldn’t trade a moment of my life with Michael. His smile and giggles light up my world. We make a great team, I a single mother and he a rambunctious little boy, working together to enjoy each other today and form a wonderful future for the both of us.

When We Were All Disabled

by Miles Townes

Twitter: @oppidus

I am a disabled person, and also dad to a boisterous daughter. She is three—both her age and hurricane strength.

On a recent chilly morning, I took her to a park near us, so she could run wild for a couple of hours. The playground is a model of accessibility: two acres for children “of all abilities,” with equipment specifically for kids who use “wheelchairs, walkers or braces, or who have sensory or developmental disabilities.” It is an amazing place.

We are potty training, but she resists because toilet seats are always too big and too cold for her. I figured this park, for all its accessibility outside, must have something pretty special in the stalls. So I ducked into the restroom.

Instead, I found stainless steel toilets with no seats. The park’s designers chose the coldest, scariest toilets possible—prison toilets. To use these toilets, I need a separate seat for my child. Since I did not bring that seat, I made sure she had a diaper on.

The toilets crystallized something for me: my daughter is technically disabled, simply because her world is not built to be accessible for people her age and size. She is excluded in ways very similar to, and very different from, my own bodily exclusion.

I am an advocate and activist—I was arrested in civil disobedience in 2017—and I pay attention to what other disabled people say online. We often suggest abled people need to understand disability justice because they might become disabled as they get older. This bothers me because my disability is often geriatrized: I’m always “too young” for my impairments, even though some people experience them from birth.

I also know that most people are not good at predicting their future needs. They are no better at imagining their own disability than they are at imagining ours.

So what if we ask them to remember, instead? By the social model, our disability is the consequence of society’s decisions to exclude and ignore our needs. As a disabled dad, it is clear to me that society largely excludes and ignores the needs of children.

Some exclusion is reasonable, for sure: I don’t want my daughter to unlock doors or unbuckle her car seat, or have access to sharp knives or toilet cleaners. But there were also a lot of changes we did not make to our house that would have made it more accessible to her. Like most parents, we excuse our inaccessibility with the expectation that our kid will grow up.

Outside our home, things get worse. Zero public toilets are accessible to small children. Even “family toilets” do not accommodate small bottoms. More than once I have kneeled in front of a toilet, holding my child up as she pooped, eyes watering with pride, disgust, or both. Most transportation is inaccessible and profoundly dangerous to children. Feeding small children in public places is often difficult. She will face these sorts of barriers until she is more or less adult-sized, a long time from now.

I have been disabled for twenty years or so. I guess I am inured it. I am used to working around and through the ableism I face, used to downplaying the barriers I face. But I find I have zero tolerance for the barriers my daughter faces. Where steel toilets would be inconvenient before, in dad mode I find them inexcusable.

It is not that I think we should rebuild our society around the needs of children. But my experience of being disabled primed me to see her experience in terms of disability. More and more, I see in her childhood a genuine experience of disability, at least by the social model. Temporary disability is real disability.

When I realize that every person in our society has that experience, more or less, I wonder if that gives disabled people leverage in our work for justice. Rather than asking abled people to imagine old age, could we ask them to remember when they were young? The same way we warn them society is not made for the old, we can remind them that society is not made for the very young.

Of course, the experience of childhood does not generalize to all experiences of disability; this is not an all-purpose tool. And there is a risk that talking about the disability of children might help infantilize disabled adults, and abled people need every discouragement from that. But geriatrizing disability is just as problematic, in my experience.

The answer, I think, is to confront infantilization head-on and even turn it around: if abled adults refuse childhood’s limits, why should disabled adults accept them? Shouldn’t our society be built so that all adults have the same autonomy and agency?

Because of my disability, I can rarely find restrooms that are comfortable for me. Some day my daughter might ask me why I hate public toilets so much, and I will remind her of those times I held her, grunting and wiggling, over a toilet bowl she was too scared to sit on by herself.

I will tell her: the same way that restroom was not built for you, it was not built for me. And that, more or less, is what ableism does. Being a dad helped me see that much more clearly.

My Son and Me

by Jennifer Senda

When my son was born, I was asked a million questions, like “How will you change his diaper?” or “What if you drop him?” To a first-time mom with lots of anxiety regarding those exact questions, each inquiry was like a dagger to the soul because I had no idea how I was going to handle those things, but I knew I had no choice: they would be handled.

Now I don’t want to deceive you into thinking that I am Supermom. There is no one in the world who fits that title, disabled or not. But I will say this—I handled it. Parenthood has been quite a journey thus far, but I am unwilling to surrender. Tell me it can’t be done, and I will find a way to do it. I am that mule-headed, a quality my son seems to have inherited, and I am glad.

Fast-forward eight years. My son is the coolest person I have ever met. He is inquisitive, full of joy, and very opinionated. He also has ADHD, and if I’m honest, our journey through this process has not been easy. There are a lot of elements to his condition that I am just beginning to understand. He has anxiety which is hard for me to see as mother. A few of his triggers include me because he is aware that the world isn’t as accessible as it should be. Ramps should be everywhere in his opinion, and I am in total agreement. As to whether my son notices a difference between us, I am sure he is fully aware of my disability; it’s kind of impossible to hide. He knows the meaning of words like transfer, manual chair, power chair, and spasms. ​Is he being exposed to too much? I don’t believe so. He can learn to be patient with himself by witnessing my particular challenges. I try to answer his questions with as much sincerity as is age appropriate. Keep in mind, though, that many children with ADHD have no filter. Redirection is constantly necessary, and both his energy and his questions seem relentless.

I have cerebral palsy, and as a woman who went through 37 weeks of pregnancy with this condition, I can tell you disability is not for the faint of heart. Sometimes, however, the pain and fatigue that often comes with our various conditions can make the average person want to pass out.

That said, however, my son and I are not inspirational. He handles what life has thrown at him with such grace. He is an example and a motivation for me. Yes, he struggles academically, but he pushes through it. Sometimes he is totally unaware that he’s being persistent, but I am. I see him and I am so proud! He is my joy and my heart.

My biggest gift is the privilege of watching my son grow and seeing his personality flourish, despite the IEP meetings, the therapies, the spasms and the lack of access that are seemingly inescapable factors in both our lives.

By the way, I love you, mom and dad! Thank you for not allowing me to surrender to self-pity. Thanks for leading by example. I hope my son learns from me as I learned from you. And to the parents and would-be parents with disabilities out there, thank you for being my people. I have realized that I am not alone in this journey. Reading and listening to your stories has been an amazing educational experience. Thank you.

Welcome to our Community Blog!

Each quarter we will select a story shared by parents with disabilities to feature here on our community blog page. See our Call for Submissions for more details.