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“The hardest part is the eyes of others”.
Hélène and Fernando, parents of Lisa, 18 months old.
“In a relationship for ten years, we are blind, our daughter is sighted. We are like all parents, we have adapted our lifestyle to the arrival of our child. Crossing the street at rush hour with a young girl bursting with energy, shopping in a crowded supermarket, cooking, bathing, managing crises… We have brilliantly acquired this change of life, together, in the black.
Living with your four senses
A congenital disease caused us to lose our sight around the age of 10. An advantage. Because having seen already represents a lot. You will never be able to imagine a horse, or find words to describe colors for example, to someone who has never seen one in their life, explains Fernando, in his forties. Our Labrador takes turns accompanying us to work. Me, I am in charge of the digital strategy at the Federation of the Blind and Amblyopes of France, Hélène is a librarian. If putting my daughter in a stroller could relieve my back, says Hélène, that’s not an option: holding the stroller with one hand and my telescopic cane with the other would be very dangerous.
If we had been sighted, we would have had Lisa much sooner. Becoming parents, we prepared ourselves with wisdom and philosophy. Unlike couples who can more or less decide to have a child on a whim, we couldn’t afford it, admits Hélène. We were also fortunate to have quality support during my pregnancy. The maternity staff really thought with us. ” “Afterwards, we get by with this little being in our arms … like everyone else!” Fernando continues.
A form of social pressure
“We hadn’t anticipated the new outlook on us. A form of social pressure, akin to infantilization, has descended on us, ”said Fernando. The hardest part is the gaze of others. While Lisa was only a few weeks old, a lot of advice had already been given to us by strangers: “Watch out for the baby’s head, you better hold it like this…” we heard on our walks. It is a very bizarre feeling to hear strangers shamelessly question your role as a parent. The fact of not seeing is not synonymous with not knowing, emphasizes Fernando! And for me, there is no question of being discredited, especially after 40 years! I remember once, in the subway, it was hot, it was rush hour, Lisa was crying, when I heard a woman talking about me: “But come on, he’s going to suffocate the child. , something must be done! ”she cried. I told him that his remarks were of no interest to anyone and that I knew what I was doing. Hurtful situations that seem to fade over time, however, since Lisa walks.
We rely on home automation
Alexa or Siri make our life easier, that’s for sure. But what about accessibility for the blind: in France, only 10% of websites are accessible to us, 7% of books are adapted to us and out of 500 films that come out in theaters each year, only 100 are audio-described *… I don’t not know if Lisa knows her parents are blind? Fernando wonders. But she understood that in order to “show” something to her parents, she must put it in their hands!
* According to the Federation of the Blind and Amblyopes of France
I have become quadriplegic. But for Luna, I’m a dad like any other!
Romain, father of Luna, 7 years old
I had a skiing accident in January 2012. My partner was two months pregnant. We lived in Haute Savoie. I was a professional firefighter and very athletic. I practiced ice hockey, trail running, in addition to bodybuilding to which any firefighter must submit. At the time of the accident, I had a black hole. At first, the doctors were evasive about my condition. It wasn’t until the MRI that I realized that the spinal cord was really damaged. In shock, my neck broke and I became quadriplegic. For my partner, it was not easy: she had to go after her work to the hospital more than two hours away or to the rehabilitation center. Fortunately, our family and friends helped us a lot, including making the trips. I was able to go to the first ultrasound. It was the first time that I was able to stay semi-seated without falling into the dark. I cried emotionally throughout the exam. For rehabilitation, I set myself the goal of returning in time to take care of my daughter after childbirth. I succeeded… within three weeks!
“I’m looking at things on the bright side”
I was able to attend the delivery. The team had us do a long skin-to-skin stretch in a semi-recumbent position by propping Luna up with a pillow. It’s one of my fondest memories! At home, it was a little difficult: I could neither change her, nor give her a bath … But I went with a home help to the nanny where I sat on the sofa for a good hour with my daughter until mother returns in the evening. Little by little, I gained in autonomy: my daughter was aware of something, because she did not move at all when I changed her, even if it could last 15 minutes! Then I got a suitable vehicle. I resumed my work in the barracks two years after the accident, behind a desk. When our daughter was 3, we broke up with her mom, but we stayed on very good terms. She returned to Touraine where we are from, I also moved to continue raising Luna and we opted for joint custody. Luna only knew me with a disability. For her, I’m a dad like any other! I continue the sporting challenges, as shown by my IG * account. She is sometimes surprised by the looks of people in the street, even if they are always benevolent! Our complicity is very important. On a daily basis, I prefer to look at things on the bright side: there are plenty of activities that I can adapt to do them with her. Her favorite moment? On weekends, she has the right to watch a long cartoon: we both sit on the sofa to watch it! ”
* https: //www.instagram.com/roro_le_costaud/? hl = fr
“We had to adapt all the childcare equipment. “
Olivia, 30 years old, two children, Édouard, 2 years old, and Louise, 3 months old.
When I was 18, on the evening of December 31, I had an accident: I toppled from the balcony on the first floor of the guest house in Haute-Savoie. The fall fractured my spine. A few days after my treatment in a hospital in Geneva, I learned that I was paraplegic and that I would never walk again. However, my world did not collapse, because I immediately projected myself into the future: how was I going to meet the challenges that awaited me? That year, in addition to my rehabilitation, I took my final year courses and I passed my driving license in an adapted car. In June, I had my baccalaureate and I decided to continue my studies in Ile-de-France, where my sister, thirteen years older, had settled. It was at law school that I met my companion with whom I have been for twelve years.
Very early on, my oldest was able to stand up
We decided to have a first baby when our two careers were more or less stable. My luck is to have been followed from the start by the Montsouris institute, which specializes in supporting people with disabilities. For other women, it’s not that simple! Some mothers contact me on my blog to tell me that they cannot benefit from a gynecological follow-up or have an ultrasound because their gynecologist does not have a lowering table! In 2020, it sounds crazy! We had to find suitable childcare equipment: for the bed, we made a custom-made raised model with a sliding door! For the rest, we managed to find changing tables and a free-standing bathtub where I can go with the armchair to bathe alone. Very early on, my oldest child was able to stand up so that I could grab him more easily or sit alone in his car seat. But since he was a big brother and entered the “terrible two”, he behaves like all children. He is very good at doing the mop when I’m alone with him and his little sister so that I can’t catch him. The looks in the street are rather benevolent. I have no recollection of unpleasant remarks, even when I move with my “big” and small in a baby carrier.
The hardest thing to live with: incivility!
On the other hand, the incivility of some is quite hard to live with on a daily basis. Every morning I have to leave 25 minutes early to go to the nursery which is only 6 minutes away by car. Because parents who drop off their child go to the disabled seat “just for two minutes”. However, this place is not only closer, it is also wider. If she’s busy, I can’t go anywhere else, because I wouldn’t have room to get out, neither my wheelchair, nor my children. She is vital for me and I too have to hurry to get to work like them! Despite my handicap, I do not forbid myself anything. On Fridays, I am alone with the two and I take them to the media library. On weekends, we go cycling with the family. I have an adapted bike and the big one is on his balance bike. It’s great ! “