I have heard many women talk about becoming “public property” when they are pregnant. Total strangers like to pat a pregnant belly and ask the gender of the baby, food and drink choices are scrutinised. In short, everybody has an opinion about everything and they don’t mind sharing it!
What happens if you add “disability” to pregnancy? And “disability” to parenting?
From my experiences as a worker and from listening to the stories of parents with disability, it seems to me that if you are a parent or expectant parent with disability you can expect at least a double whammy of the usual public scrutiny.
Judith, a parent with a physical disability, asks “why do people have such a hard time dealing with disability and pregnancy together? Is it because the disabled as a group are seen as asexual or childlike and are thus not supposed to reproduce? Is it because people are afraid we are irresponsible and unable to care for our children properly? Or is it because people are afraid our children will also be disabled and will add to the burden we already place on society?”
Anecdotally it seems that it’s not just total strangers who question the ability or right of people with disability to become parents.
Trish Day created the website disabledparents.net after she had a range of interesting experiences during her first pregnancy. Trish says “the few people I had met who were parents with disabilities warned me. They all told me that many people in our society have definite opinions about people with disabilities becoming parents. They said that total strangers would accost me and tell me that I had no business being a mother. I spent many months planning how I would respond to these people, but each incident that happened wasn't on the list of what I expected. I never knew quite how to respond. One day, a co-worker, who I'm sure didn't mean to offend me, said, "I'd like to see how you're going to take care of a baby!" I can't remember what I said, but I remember thinking to myself, "I'd like to see that, too!" Growing up disabled, my parents sheltered me, and I never had the opportunity to take care of a baby. I helped with changing a diaper once when I was 10, but was never left alone with a baby in my life. I didn't know how to lift a baby or feed one, and I didn't and I didn't know anything about feeding and dressing. I went back to my desk in a panic.
As I sat at my desk, I realized that no baby is born holding an instruction book. Thank goodness for that; I could make up my own rules as I went along, and if I were lucky, the baby wouldn't notice that I was different. Maybe the baby wouldn't notice that I was doing things differently because he or she wouldn't know any other way. A similar philosophy has guided me through my life as a disabled person. If I've never experienced the things that the rest of the world thinks I'm missing, then, in my own way, I am "normal," whatever that is. So maybe the same approach would work for baby; at least I was hoping so.”
I love Trish’s approach and I think she hits the nail on the head when she says that no baby is born with an instruction book. I figure that most new parents have to do their best and make it up as they go along, disability or no disability.
Disabledparents.net also describes some of the equipment related challenges of parenting with a physical disability, along with suggestions, solutions and advice about equipment providers. Reading about modifications made me think about other uncommon baby products, for example prams for triplets. According to Hellin’s Law only 0.013% of births are triplet births, yet with a simple Google search or a trip to Babies R Us you can view or obtain information about a range of appropriate prams and joggers. Statistics on the prevalence of physical disability vary, but in Australia it seems that somewhere between 10 – 15% of our population identify as having a physical disability. Of course not all of these people are parents or intent to become parents, but even so, you’d think there would be a big market for modified baby equipment. So why is it easier to find a triplet pram than a modified pram for wheelchair users?
Are you a parent with disability? Or a person with disability who looks forward to having kids in the future? What is the best way to overcome the frustrations and challenges of negative public perception?