In a book, a journalist recounts the experience of motherhood while reflecting on issues related to her disability
Mothers and fathers know what the anticipation for the arrival of their first child is like. The fear, the apprehension, the anxiety, the curiosity to find out if it is a boy or a girl, the countless preparations, medical exams, baby layette, and the (many) unsolicited opinions from others. For journalist Mariana Baierle, 35, and bank employee Rafael Martins dos Santos, 42, the whirlwind of emotions was compounded by the coronavirus pandemic and a unique aspect of the couple: both have retinitis pigmentosa, a congenital degenerative disease that causes visual impairment and even total blindness.
Mariana has a visual acuity ranging from 5% to 10%. Rafael, on the other hand, has visual acuity ranging from 15% to 20% in his right eye and is blind in his left eye. When she excitedly shared the news of her pregnancy, Mariana was asked questions like: “Can your husband see?”, “What will it be like when the baby is born?”, “Will you have someone helping you 24 hours a day?” These questions came from coworkers and even her own family. Would they be able to raise a child? This is a concern many parents may have, but in their case, they felt it was accompanied by a greater sense of skepticism.
Mariana and Rafael have friends with disabilities who are parents, but they know that for many couples with disabilities, the lack of support is significant. Prejudice meant that the right of a person with a disability to fatherhood and motherhood had to be guaranteed by law in Brazil, through the Statute of the Person with a Disability. Rafael even came to believe he would never be a father.
— I used to think: “I can't be a father, imagine that, it's so irresponsible… A child!”. What I saw wasn't for me, it was for others. Then, over time, I started meeting people with disabilities and my doctor herself told me that I was the one being very prejudiced — he confesses.
Natália, the couple’s daughter, was born on June 10 of this year. Now six months old and with 100% vision, she already seems to understand what accessibility is. The bond with her parents is so strong that the baby has found her own little way to communicate with them both.
— She came to sort of understand the parents she has. And all those fears, we realize it's more because it's the first child, and not a matter of incompetence. Our lactation consultant used to say: “Relax, as long as you have love, everything will turn out fine,” — Rafael comments.
—Everyone says that children adapt a lot to their parents. Natália is very vocal. It seems to be instinctive to her; we joke that it looks like she's going to speak sooner because she knows it's no use just pointing — Mariana recounts.
Even during pregnancy, the couple did not stop experiencing the same emotions of anticipation. Mariana remembers the first time they heard the little girl's heartbeat during an ultrasound.
The heart audio was one of the most exciting things for us.
The exam, which is very visual, was adapted for them thanks to the doctor's sensitivity.
— Dr. Bianca Balestro would freeze the screen at the end, take my hand, and show me: “Here is the little eye, here is the little mouth.” She kept showing me so I would try to understand. An ultrasound image is already something difficult, so she would describe it and tell me about it — Mariana recalls.
The two of them recorded all the moments of the process, and this was one of the reasons why Mariana decided to turn the memories into a book. She felt that the female universe and motherhood needed to be explored more in the publications she participated in regarding accessibility. With the title Motherhood and Visual Impairment: From Dream to Birth by Natália, the book is a candid account by the journalist of what she went through from pregnancy until the first days after birth. To secure the investment to publish it, Mariana ran a pre-sale campaign among friends (details on how to help are on the blog Three Little Drops, where she already publishes her reflections on disability).
—It seems kind of obvious within the community of people with disabilities, but for society in general, it isn't. It is more than necessary to show that it is possible, since people still view you as incapable, especially if you are a woman. What is lacking is the understanding that educating is much harder than being a mother with a disability.
SOURCE:
GZH
