“What do you want to be when you grow up?” is a question I got asked a lot as a child, just like any other kid. And as you might expect, over the years I came up with all kinds of different answers: princess, vet, fashion designer, scientist, you name it! But no matter how many crazy and completely opposite ideas I had about what I wanted professionally, there is one thing that never changed: my ardent desire to be a mother. When I was little I loved to play with my dolls and pretend I was pregnant by hiding them under my shirt, as I am sure many other girls did too. I have names picked out for years, one for a boy and one for a girl. The only thing I am missing is the baby.
For a long time I did not think of my disability as a possible obstacle to motherhood. It was only after an incident I had in my last year of high school that I began to question whether that was even possible. One of my classmates had just had a baby and brought him over on the last period of class to introduce him to the rest of the us. Everyone took turns holding him and everyone had a chance to do it. When I noticed her leaving, I thought she had forgotten about me and asked if I could hold the baby too, but she told me she didn’t want me to hold him because she thought I was too weak and clumsy and feared I might drop him. At that moment I thought, “People don’t even let you hold a baby and you still want one of your own?” Yeah, right." I got home devastated and told my mother what had happened. She did everything she could to comfort me, but it was awful. My classmate's words resonated deeply with me and continued to hurt for years, and I'll admit that for a short time I gave up on having children, thinking that it simply wasn't for someone like me.
As time went by, I started to reconsider the possibility, and realized that I had not been able to get it out of my head at all. Eventually, I realized that only my doctors could give me a definitive answer. What worried me most was whether having a spinal cord injury would affect my fertility, and if my body would ever be able to handle pregnancy. What if they told me it was too dangerous and shouldn't take that risk? I had never been told no, but one thing my disability taught me is not to automatically assume that I can do something just because no one has told me otherwise. The lack of a clear and explicit answer could mean both yes and no, so I I gathered my courage and, the next few times I had check-ups with my neurosurgeon, traumatologist and nephrologist, I took the opportunity to ask all three of them the million-dollar question: “Doctor, can I have children?” Obviously, I was over the moon when all three of them said yes.
I know what you’re probably thinking: “Child, you’re still single and living with your parents, don’t you think it’s too soon to worry about kids?” I agree that it may seem premature, but there’s a reason behind it. Not only do I see friends my age having kids left and right, but I also believe that taking care of my reproductive health like I take care of other things is necessary and responsible. I’ve been a woman of childbearing age for over a decade, so why not? Plus, I’ve learned that sometimes planning ahead is key, because finding resources and support in general is harder for people with disabilities than for everyone else. One example is that, since any future pregnancy of mine will be considered high-risk, I would need a specialist to monitor me closely throughout, but finding a medical team that already has experience with patients like me and is willing to take over of my care will probably be a challenge. So far I’ve found at least three doctors in Chile who have had patients in conditions similar to mine, but none in my region. I live in a small city with no high-risk OBs, and it's possible that, for example, when the time comes, I won't be able to deliver here. That's precisely why I prefer to be ahead of the curve, because it's better to handle the logistics beforehand than to find out at the last minute. Also, I don't want to gamble with my health or that of my future child simply out of ignorance.
Another thing is the practical side. One of the things that complicates my day-to-day life the most is that, when I use my crutches, I obviously can't use my hands to carry things. This means that I couldn't hold my baby while standing or push a stroller, so I might have to get creative. I've found baby seats or car seats that can be attached to wheelchairs and several baby-wearing options. The only thing I'd like is for these products to be available to all parents who need them, and not just in rich countries like the United States, because that creates inequality within a group that already suffers from it. Also, since most of these things are custom-made and not found in conventional stores, they are very expensive and not many people can afford them. I would find it very unfair if anyone ever had to give up their dream of having a family because of financial problems. Also, knowing how online shopping works, I have a sneaking suspicion that if I order one of these adapted strollers, it will arrive when my child is already in college… Hello, Amazon?
Despite everything, I have been able to find my village. A couple of years ago I joined a Facebook group for women with spina bifida, dedicated exclusively to discussing sexuality, pregnancy, childbirth and parenting. I wasted no time in asking questions about what the experience had been like for members who had already been pregnant, just so I could get an idea of what it might be like for me. When I started reading about other people's experiences, for the first time I realized that I was not alone and that there were countless women like me at different stages of their journey. Some are still trying to conceive, some are already pregnant, and several have children of different ages. They taught me what questions to ask the doctor and showed me the different tricks they use in their daily lives to make adaptive parenting easier. I even learned how to modify a crib so that I could open it from the side while sitting. All of these things have helped me feel calmer and more confident.
Unfortunately, there is no shortage of prejudiced people who believe that a woman with a disability should not be a mother, and even have the audacity to say it to their faces. There are many ableist assumptions behind this mindset, such as the usual "how are you going to take care of a child if you can't even take care of yourself?". I ask these people: what makes you think that I don't know how to take care of myself? Do you think I'm disabled because I didn't take care of myself? There is also no shortage of comments with eugenicist overtones swearing that all disabilities are inherited and that my children will turn out "just like me," as if I would love them less if that were true. In fact, I remember meeting another spina bifida patient in the hospital years ago, maybe 30 years old, who was waiting to be seen with her mother, just like me. I tried to start a conversation with her, but her mother wouldn't let her speak, and started oversharing very intimated details about her daughter, in front of her, with my mom. She said that a doctor had told her to get her sterilized, and my mother and I just stood there, looking at each other completely horrified. We couldn't believe that in the 21st century there were still doctors with that kind of eugenic and discriminatory views, but unfortunately, yes, they do exist. Sexual and reproductive rights are something that women with disabilities still have to fight tooth and nail for, much more than others, because our autonomy is not respected. People still look at a woman who rolls into her pregnancy check-up on her wheelchair with horror. People still assume she was raped. People are still surprised if she goes to the doctor alone. People still scold and ask her what on Earth she was thinking. People still treat her like a "social case." People still tie her tubes without her knowledge while they do her c-section. People still threaten to take her child away because she's allegedly not fit to be a parent
All of that will probably happen to me, but in that case I do have an ace up my sleeve: being a social worker myself. I know better than anyone how parenting skills are assessed, and how I can prove that I am perfectly capable of meeting a child's basic needs. I may not be able to do everything the same way as other people, but I manage anyway, and the result is what counts. Plus, if all goes well, my children will also have a father, grandparents and other relatives, and I won't have to do everything on my own. I now feel confident and prepared for when the right time comes for me to have a family, and I know that although I won't be a perfect mother, I will give it my all and do be the best I can be.
I want to end this by sharing a more wholesome anecdote. A few years after the incident with my schoolmate, I went to visit a friend who almost as soon as I arrived asked me if I wanted to hold her 6-month-old daughter. I hope she didn't see my eyes well up. S, if you're selling this... thank you.
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