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The ins & outs of "mothering" with a disability
by Kathleen Shoop, PhD
We all have images in our minds of what a person with disabilities or limitations looks like and how she lives. Those images usually contain wheelchairs, canes and service-animals. But, my research pointed to a broader picture of people with disabilities - people whose disabilities are less obvious as well as those who we can see are limited in one way or another. No matter which group we talk about - those with obvious or with hidden disabilities - many are also mothers. And while every mother has good days and the kind of days that make her wonder if she should be parenting anyone at all, mothers who have disabilities confront obstacles that are sometimes hard for people who are relatively "abled" to understand.
I wasn't going to include myself in this article, but then it happened again. I have multiple sclerosis and on one particular day that left me especially tired and weaker than I like to be, my foot dragged and I tripped on the sidewalk outside my kids' school.
"Too much boozing this afternoon, huh?" another mother joked.
I laughed it off, it didn't really matter. I mean, should I stop and launch into a dissertation on MS symptoms or be sure to stow a file folder of my medical history in my pocket for just these times?
No, of course not, it doesn't really matter what other people think, but I do have the urge to go into the reason for my clumsiness. Why do I care? I asked myself. And as I researched this article and I became educated about disabilities, I found my experience reflected in the lives of many mothers - those with very visible limitations and those who had more discreet manifestations of diseases or genetic defects like me.
Though this article doesn't cover all the issues associated with living with a disability, hopefully it provides a unique view into the world of two very special moms.
Mona Chabra - mother of Amal
Mona Chabra has lived with a disability since she was a child and so not only has she experienced prejudices, but she has created a dynamic, rich life that leaves her fulfilled and content.
"I have a rare form of glucodystrophy that impairs my ability to walk. At six, I started walking with a limp and eventually needed to use a wheelchair. Using a wheel chair is a very "NORMAL" part of who I am. My power wheel chair is literally my power. Without it I couldn't achieve the things I have!"
When I asked Mona if she ever has to field barbed questions like "how could you have a baby if you're in a wheelchair, how can you be so positive when you're in a wheel chair?" she was candid. "In terms of stereotypes, that's a constant battle. People usually assume my son is my brother. Although I do look younger than my age, it annoys me. Society views disabled people as non-people. Disabled people aren't supposed to have intimate relationships. So, how could they be parents?"
Thankfully, Mona's obstetrician did not harbor this narrow-mindedness. Mona recalls, "He had previously delivered babies of disabled mothers. My doctor was very supportive and encouraging. He told me I would deliver normally and I did!"
Mona's adjustments to motherhood were like anyone else's. Her life was already structured to meet the needs of the particular limitations she'd lived with for years and so as she adapted to motherhood, she did so within the constructs of a life she'd already been living well. "My mom made me a soft harness so Amal was securely belted in. It became a wheelchair for two. We went for many outdoor and indoor adventures. When Amal got older he stood on my back wheels and off we'd go!"
Mona recognizes that living the life she wants - like any mother - takes lots of preparation and planning. Her planning simply consists of slightly different tools and support. "In order to achieve a successful disabled lifestyle it's important to have a strong, reliable support system. I'm very fortunate. My system consists of my power wheel chair, my modified wheel chair mini-van, modified home, great caregivers and my amazing parents. With their support, my disability has ability and I can do anything!"
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