I was born in a small mountain town near the Four Corners of Colorado. Shortly after my birth, it was discovered that there was a problem with my eyes. Within the first 24 months of my life, my mother and I traveled the country as I underwent 21 eye surgeries. My mom had suffered a series of miscarriages and I was her first live birth. She fought hard, hoping I might one day see. At that time we didn’t qualify for any children’s services, so she eventually went bankrupt paying for my medical care.
My mom had to grapple with new motherhood in a world where there was very little understanding that living a life with a disability can be a fine thing. My young life was marked by the world’s zest for finding a cure for me and my mom faced real pressure to do everything she could to not end up with a blind child, as if the whole world were chanting, “Save the baby’s eyesight!”
I understand her plight a lot better now that I have my own daughter, of course. Because motherhood requires you to forge ahead down unknown paths, it’s a constant not-knowing. My journey with my daughter has had its own challenges, including a protracted custody battle where my right to parent was questioned in both obvious and nuanced ways because of my blindness. This is ironic because, per my role as a professional disability rights advocate, I’ve been asked to serve as an expert witness in court cases where judges ruled that disabled parents could not care for their own children. According to Robyn Powell, an attorney and researcher at the Lurie Institute for Disability Policy at Brandeis University, “Mothers with disabilities encounter pervasive and significant discrimination within the family law system. They contend with judges, attorneys, and evaluators who often harbor biases and presume that their disability makes them incapable of raising children.” This kind of paternalism is similar to what all mothers experience as society tries to “put them in their places.” Just ask any pregnant woman who has been assailed by all kinds of unsolicited dos and don’ts from perfect strangers.
My experience as a blind mom is that people often assume that if you have a disability you can’t take care of yourself, and by extension, that you can’t take care of a child. Some folks even lay their ableist beliefs right at my daughter’s feet, saying things to her like, “Oh, it’s so nice that you can help take care of your mom” when we are out on walks. Sorry, folks, there’s no role reversal in my household. Comments like these show how deeply embedded ableism is in our culture. My daughter and I go on walks to the park together just like other families do, she just wears spirit bells and a GPS tracker so that I can tell where she is. This is called “adaptive parenting.”
There’s not enough awareness about what is possible when disabled parents are provided the supports and services they need. The National Council on Disability’s Parents Rights Task Force is currently working to get federal legislation passed that would ensure training to family court system employees about adaptive parenting and the rights of disabled parents. This is badly needed as children of parents with disabilities suffer disproportionately high rates of involvement with the child welfare system. These changes can help keep children with their disabled mothers (and fathers).
The truth is, even if you don’t like it, someone was there to wipe your butt when you were a baby. Most of the time, it was probably a woman. Being a mom requires handling more poop than you’d ever think possible, and yes, adaptive parenting can get messy at times. But I’ve been fortunate to work with occupational therapists who have helped me with the adaptations I need to parent my child. Everybody should have that, don’t you think?
Being a mother makes you appreciate your own mother in a completely new way. When you bring a human into the world, you merge your journey with this other little life. My mother had no formal education but she put her everything into her children. The drive to do right by your child is the most powerful thing I’ve ever felt, and I know she felt it, too. My mom fought like hell for what she thought was right for me and, because of her loving care, what was right wound up happening, even if it wasn’t what she had imagined. I am still blind. But I am also a hardworking tax payer, a well respected professional, and the mother of a beautiful 6-year-old girl. My not being able to see didn’t actually ruin anyone’s life. Surprise, surprise. I am who my mother wanted me to be.
Jessie Lorenz is executive director of the Independent Living Resource Center San Francisco.