Tuesday, September 2, 2014

'This is a love story'

By Louise Kinross

The Fall: A Father’s Memoir in 424 Steps
is a book that will intrigue, delight and surprise you. Written by Brazilian author Diogo Mainardi, it’s made up of 424 short sections of text and images. Each marks a step his son Tito takes, with great difficulty, to reach a hospital in Venice where a medical error during his birth caused his cerebral palsy. As they walk, Diogo links Tito’s disability to great architecture, literature, historical events, movies and other cultural phenomena of the Western world.

BLOOM: The book begins with you blaming historical figures for the medical error that caused Tito’s cerebral palsy. I think many parents get stuck on ‘why’ their child’s disability happened. Why did you decide to link Tito’s disability to architecture, historical events and movies?

Diogo Mainardi: In my case it was ironical. Obviously there is no direct link. In our case I didn’t need to find a reason for Tito’s disability because it was very clear from the beginning that it was a medical error. So in our lives there were the facts—and there was a judicial process for dealing with those—and there were the feelings. And the book tries to deal with them both.

To my incredible surprise, when my son was born my life was completely overtaken by feelings of love. Before he was born, I was anti-sentimental. I didn’t believe literature was about feelings. I believed it was about ideas. In the past, I was unable to write about feelings. After five years of joy and love with Tito, I started to think about this love and everything connected very easily in my mind. I felt it was the right thing, the honest thing, to try to express this passion through the only means I had, which was writing.

I tied the ‘why’ of Tito’s disability to beautiful things, to things that I love because, to my surprise, from Tito’s birth onwards, it was such fun to have him around and so enriching and exciting to follow every step he took. It was a breathtaking and improbable and unexpected adventure. I couldn’t associate him with anything less than the books I loved, the pictures I loved, the buildings I loved.

BLOOM: In the book you talk about how the person you were died when Tito was born. How did his birth change you?

Diogo Mainardi: It humbled me certainly. The first thing that happened to me was that I understood that I wasn’t the main character in my own life. I was a secondary character. I was not Costello, I was Abbott. I was the straight man, there to make things happen. That put everything in our life into a new perspective. I calmed down and enjoyed being the follower of someone as I could not have imagined before.

BLOOM: In the book your acceptance of Tito’s cerebral palsy is absolute and you say it was never a cause for sorrow.

Diogo Mainardi: It’s a strange process. I couldn’t and can’t see Tito in any other way. He is Tito with CP and I can’t imagine him in a different way so it’s an absolute acceptance because he’s my son and I love him just like that. It’s very hard for me to imagine myself loving, and at the same time, wondering if that object of love should be different from what it is. That’s the acceptance. But I can only talk to our tiny experience and I don’t try to imagine other parents’ experiences. The book is not about a father with a CP son, it’s about Diego’s experience with Tito.

BLOOM: You talk about wanting to celebrate a son with a disability. Do you think you would have adapted in the same way if Tito’s disability was more severe?

Diogo Mainardi: Yes, I would have adapted in the same way. If it involved physical suffering it may have been different. Tito doesn’t have any physical suffering. At the beginning, when we learned Tito had CP, during the night my wife and I would worry and talk about being worried. But as soon as Tito woke up, the worry would immediately disappear because the idea is much more terrifying than the fact—than the child itself.

BLOOM: Tito is associated with falling in the book, due to his tight muscles, and there are references to the biblical ‘fall.' You talk about how your wife Anna fell in front of you and Tito when he was a baby and he laughed and that helped you to see that we’re united in our imperfection.

Diogo Mainardi: That was the turning point. I had already accumulated literary experiences that helped me to have lower expectations about man’s accomplishments. I was very much into comical, humorous literature and that helped prepare me to not idealize my own son.

BLOOM: The book conveys the idea that imperfection is part of the beauty of being human.

Diogo Mainardi: Tolerance is the end result of diminishing our arrogance, isn’t it? I don’t think you have to have a disabled child to learn to live with that idea. The most extreme case of human arrogance was Action T4, the Nazi’s project to kill disabled children. The opposite is the acceptance of humans being flawed.

BLOOM: The part of the book where you link the Holocaust back to the German who first asked Hitler to kill his son because he couldn’t accept his disability was very compelling. Why is it so hard for us to accept disability in our culture?

Diogo Mainardi: It has always been this way. Children with disabilities were killed in ancient Rome and they’re still killed in Indian tribes in the Amazon. It’s something that’s seen as unacceptable. I’ve always seen my book as part of a larger world. It’s a love story between me and my son and the difference between other love stories is that the handicapped child was segregated or put in a ghetto. I don’t accept segregation. Tito is part of literature and part of a love story because I’ve never seen him as being excluded. Tito brought me a sense of reality. The things I knew by reading, by seeing, by thinking became so incredibly real.

For example, I was horrified by the Holocaust, obviously. I knew intellectually what it meant. But after I had Tito I had my own Auschwitz survivor at home.

BLOOM: Is Tito accepted in your town?

Diogo Mainardi: In our small village in the book Tito is very much part of the landscape. He is accepted and he’s also protected. In Venice Tito manages to go from our home to school walking by himself with his walker and he gets out of the vaporetto [water taxi] and gets on the school lift and goes by himself. Obviously, he has no friends.

BLOOM: What? He has no friends?

Diogo Mainardi: Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

BLOOM: But doesn’t the school have a responsibility to educate students?

Diogo Mainardi: Trying to instill tolerance in a forceful way doesn’t work. I tell the teachers to try to see disability as a resource and opportunity. Last year Tito’s class learned about World War II and the part of my book about Nazism and the T4 project was read to all the children. They knew Tito had a father who wrote about how he loved his disabled boy and they learned about something that happened in their grandparents’ lifetime—the greatest monstrosity of all time. I think that’s a more effective way of integrating children with disabilities.

BLOOM: Doesn’t his lack of close friends make you sad?

Diogo Mainardi: Yes, it does. But at the same time everything we try to accomplish with him is to make him strong enough to accept the fact that being different means his relationships with people will be different, and he should be proud of his difference and conscious of it. We never say ‘You are just like the other boys.’ We always say ‘You are a fantastically unique boy and while the uniqueness has many disadvantages that you have to learn to deal with, it also defines many wonderful things and hopefully you will find them as wonderful as we do.’

We try to teach Tito and our other son values and principles and this is part of what a parent can do, which isn’t much, but we can show through example how we feel about him being what he is and that’s what we try to do. We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. We prefer to win small battles and everyday battles and mainly to reinforce him so he can try to do it himself.

BLOOM: You make reference to overcoming the need to overcome Tito’s disability in your book.

Diogo Mainardi: That’s something which we abdicated very soon, because we understood some obstacles can’t be surpassed. You can’t surpass every single obstacle and you have to accept and conform yourself to the differences or difficulties that exist. As you know, there is also a book genre of people with disabilities who climb the Himalayas.

BLOOM: I hate those books.

Diogo Mainardi: I have to accept that we won’t and we can’t and we’re not supposed to. I say leave Mount Everest over there. Tito has great difficulty walking so let’s get him a small ramp and a bridge and that’s all I asked. I think there’s a tendency to patronize and look for stories of victory over failure. We accept our failure and we accept that our son might fail and we will fail. That helps to put things in perspective because my son’s flaws are my own flaws. They are no different than mine. Having Tito made everything real. Things were not ideas anymore, they were a part of my life. There have been thousands of years of ‘falls.’

BLOOM: What do you hope readers take from the book?

Diogo Mainardi: I hope they have fun. I hope they can see how much fun our experience with Tito was because it was, for us, really a breathtaking adventure and the love was such a great, unexpected feeling at that moment in my life.

BLOOM: I loved the book because it linked disability to all of the great stories in history.

Diogo Mainardi: This is a love story and a family story. Years ago children with disabilities were not part of families’ stories because they were segregated. They were locked in a dark room. Not now. Shakespeare wrote about families and conflicts in families. This is a family. I’m not Shakespeare. People can connect with families and I expect them to accept my son as part of the family.

No one outside our world will read something that’s simply about cerebral palsy. We need to enlarge the subject. When we talk about larger phenomena and larger ideas and when we mix disability with tolerance, with having a less limited view of mankind, it enriches our own experiences. That’s what I tried to do in the book. It’s our story, but it’s a common story that has a past in the great stories of the world.

BLOOM: Do you think the book can reach people who don’t have experience with disability?

Diogo Mainardi: Yes. I try to break the barrier and go to the other side because it’s the side in which we’ve lived the whole of our lives before having a handicapped child. We need to talk to both sides. As Tito’s father I could take him and show him to the rest of the world and I could show the rest of the world to him.

BLOOM: Has Tito read the book?

Diogo Mainardi: Yes. I asked his permission to write the book beforehand and after a certain reluctance he accepted it and participated in it. He helped me find the photos and took some of the photos we used. He was very proud of the book when it came out in Brazil and was a great success. He went to the Edinburgh Book Festival recently and signed the book.


Exactly what Andrew Solomon said on the cover: Wise and unsentimental. Realistic. I want to read the book, based on this interview.

There is so much wisdom in this interview with Diogo Mainardi, Louise. His bluntness in saying, about his son, ‘obviously, he has no friends’ was a relief to read, quite frankly. I feel sometimes we’ve been sold a great lie – if we do everything correct in building a community for our kids of course they will have friends. And when then don’t?

AND, I take his advice about changing the world (‘don’t overreach’) to heart.

I eagerly await his book to show up in my mailbox from Amazon!

Wow, I just loved reading this interview. Ditto to the above comments. I cannot wait to read this book. Thank you! I especially loved "Tolerance is the end result of diminishing our
arrogance, isn?t it?"

This is a very beautiful interview
. I just love hearing more and more touching and isightful stories from fathers. This book sounds wonderful and and I hope to read it and recommend it to many people!!

Thank you!

Barb Social Worker

Very much enjoyed this interview. I marvelled at Diogo's reply to the question: How did Tito's birth change you?

"The first thing that happened to me was that I understood that I wasn’t the main character in my own life. I was a secondary character. I was not Costello, I was Abbott. I was the straight man, there to make things happen. That put everything in our life into a new perspective. I calmed down and enjoyed being the follower of someone as I could not have imagined before."

I look forward to reading the book!