A Challenge, Not a Drama

 

In reality, we should talk about announcements of disability, in the plural. Because it is just as difficult to hear the announcement of a child's disability as it is delicate to announce it to family and close friends.

The announcement of a disability is an explosion in a parent's life, it challenges your certainties and turns your emotions upside down. One is overwhelmed by anxiety facing the unknown in the best cases, facing negative representations most of the time, or both. It is easy to understand the importance of being supported by professionals who can answer our questions with honesty and sensitivity. There is no need to project too far. We cannot imagine how violent it can be for parents of a newborn with a disability to be projected into what might eventually become their child's adult life. We don't need to hear about sheltered work or adult care homes, but rather to be reassured, encouraged, and supported regarding immediate issues. And above all, we need time to process what is happening to us and to adapt to our new reality.

In our case, the diagnosis was made at birth. I may shock many people, but I am relieved not to have had to choose.

For me, disability has a face, a face that I love, and I cannot imagine my life or my family without it.

However, we were able to choose to be happy with and despite the disability. It is a selfish and generous choice at the same time. Selfish, because we think about our own happiness, generous because it inevitably involves a part of sacrifice. Anyway, when the child is here, the only relevant question is "how?", how do we move forward now? Forget the question "why me?", it is useless and leads to a psychological dead-end. Disability is one of the unpredictable things that happen in life, and becoming a parent means accepting this unpredictability and the unknown that escapes our control.

That being said, I want to specify that I am in favor of prenatal diagnosis and parents' choice to accept or not accept disability. I only regret that our society devotes more energy and money to screening than to improving the living conditions and support for people with disabilities and their families. It would be a more profitable and wise choice in the long run, economically speaking, and fairer as a society. We too often forget the fragility of our human condition. The journey of Paralympic athletes reminds us during the Games, but we quickly forget.

But it is also difficult to announce a child's disability.

I was fortunate that Pablo was born in Mexico. I will never thank our friends enough for providing us with so much support and especially for celebrating Pablo's birth with the same joy and pride as his sister's two years earlier. I am convinced that the natural way in which they welcomed and embraced Pablo's disability changed our perspective on him. Their trust in us, in the future, in our ability to overcome the challenge as a couple and to succeed as a family was contagious, it allowed us to start the acceptance process. It's like changing the prescription of your glasses, you see things differently.

Unfortunately, we also faced less positive reactions. I had to remind close, very sad friends that I had just had a child above all, that I was happy and proud, and that they should rejoice with me instead. I'm not sure I convinced them at the time. Others act as if there was no baby at all, because they feel so uncomfortable, it's terribly hurtful. Many find you courageous and feel compassion for you. I do not consider myself to be pitied, on the contrary, I think my life is enviable in many ways. It's all a matter of perspective. Disability is a challenge, indeed, but not a drama in itself. Of course, each situation is different, and unfortunately, some are indeed dramatic.

But, as parents of a person with a disability, we do not need pity or charity, but justice and respect, a real place in society for our children, and the means to fulfill our mission.