Friday, October 8, 2010
Snapshots of humanity
Invisible No More records the lives of Canadian children and adults with intellectual disabilities through 100 photos and 35 stories from renowned social documentary photographer and writer Vincenzo Pietropaolo. Vincenzo spent a year travelling to every Canadian province and territory to meet with individuals with developmental disabilities and their families. He photographed them in everyday places - at school, in the workplace, at home, at the zoo, and on an ice rink. He spent days at a time with them, talking to them and writing about what he saw and experienced. I was moved to hear about what he learned and can't wait to see this book.
BLOOM: How did the idea for this book originate?
Vincenzo Pietropaolo: The Canadian Association for Community Living had its 50th anniversary coming up and they asked if I'd submit an idea for a book. I've done long-term projects on immigrants, refugees, cities and so on - but all with a social dimension. They liked my proposal and did some fundraising to send me across the country.
BLOOM: What kind of experience had you had with disability?
Vincenzo Pietropaolo: I was very ignorant about intellectual disability and had only had superficial contact with people with disabilities. There was a boy in my neighbourhood growing up - but we almost never saw him. All the kids would be playing on the street, and sometimes this kid would come out on his verandah. But then his mom would come and tell him to come in. I wanted to call the book Invisible No More because I felt that all of my life these people had been very much invisible. Families are sometimes ashamed, or society is ashamed, and these people were hidden in homes or in institutions.
BLOOM: What did you learn on your trip?
Vincenzo Pietropaolo: I learned that I don't really know what a disability is any longer. Disability is a very loaded word and we're all disabled to a certain extent. When the book came out some people said: "Some of these people don't look like they have a disability. What's your point?" One of the places I photographed was in factories where people were working for pay like everyone else. When I arrived, I couldn't tell who had the 'supposed' disability. Usually the boss had to point the person out and told me: "I wish I had 10 guys like him because they're the best workers: never late, conscientious." Of course sometimes you can tell someone has a disability because of physical attributes, or because they require a lot of care. I learned that people with disabilities have fewer human rights. They are presumed to have disabilities before they are necessarily disabled. They are presumed to be different, or that something is wrong with them. The experience was humbling and transformative for me. I saw that these are human beings who need care or support. But what makes us a great civilization is whether we make enough room for everyone in our society. How can we not do that in Canada, as one of the richest countries in the world?
BLOOM: Were the families you met well-supported or struggling?
Vincenzo Pietropaolo: I saw both, and it reflects class difference. If a family is very poor you have a lot more struggles to overcome. Not just economic, but hurdles of cultural appreciation or acceptance. If you're a bit better off, you can afford certain things - to have an elevator in your house, or a special wheelchair. I also talked to people who had been struggling all their lives - people who were institutionalized wrongly as children, in terrible conditions, and then let out later as if they had been a criminal.
BLOOM: What kind of attitudes about intellectual disability were people facing?
Vincenzo Pietropaolo: They told me they had to always educate their friends and sometimes their family. Sometimes there were problems within families where some family members would say "that's okay," and others just couldn't cope. I heard that when you enter the healthcare system, all of a sudden your kid is less and less your kid, and you're told what to do, and you have fewer rights. I talked to so many mothers. Many said they had to fight the system to educate the health care professionals about their child. In the end, who knows more than the mother I thought?
BLOOM: What kind of impact did these individuals have on their families?
Vincenzo Pietropaolo: I saw tremendous affection and love within the families that I visited. The prevalent feeling I got was that despite parents’ initial trepidation and fear, the child became an integral part of the family and everyone was enriched by it. I remember being in one woman's house and talking about her 11-year-old boy with Down syndrome. She was telling me about all of her fears and difficulties at the beginning. She was very candid. Then this kid burst into the house and jumped into his mother's arms – just like any kid would. This boy is a little different – he has certain physical features that make him look different. But does he have any less love? No.
BLOOM: What were you trying to convey through pictures?
Vincenzo Pietropaolo: I was trying to convey the humanity in each situation. I wasn't trying to create a catalogue of people – but to record moments of humanity that occurred between people and between them and me. Photography is very subjective. As witnesses, every photographer has their own position and subjectivity. With me and my camera, it's important to establish a feeling of trust and rapport. The first step is to be accepted. I'm trying to photograph from within, not from a distance, as an observer. I don't pose people. I ask them to look at me and talk to me. I usually photograph very close – three to four feet away. Eyes are the most important part of a person in terms of a photograph. When you as a viewer look at a picture, those eyes will be looking at you. I also wanted to make it not so romantic. How do you make a mother or father kissing their child warmly less romantic? I don't want to give this rosy picture. But at the same time, I don't want to give a negative picture.
BLOOM: How do you develop trust with the participants?
Vincenzo Pietropaolo: I have to go in disarmed and ready for anything, ready not to take the picture and leave without the picture. I talk to them about what I'm trying to do and people can tell if you're sincere or not. I explain that I don't want them to do anything special. I want to capture ordinary moments: going for a walk, sitting with a coffee, reading a story. Life isn't about drama. It's about ordinary moments that fill everyone's lives. I want to capture that in a picture that resonates beyond just the family involved, to others, across cultures and across time. I went to the Metro Zoo with one mother and her boys. The boy with a disability had adopted a crocodile, so they were visiting his animal. He doesn't talk very much but at the end of the day there was a gift shop and he told his mom he wanted to go in there. He bought a stuffed baby tiger and comes over and says: "That's for you," and gives it to me.
BLOOM: Wow! What impact do you hope the book will have?
Vincenzo Pietropaolo: I hope it will help make people more aware of the humanity that's hidden in our society and that we know very little about. I thought about how I was going to dedicate this book and I walked into an old cemetery that used to belong to a mental institution. The institution is no longer there, but the cemetery is. And I was shocked when I realized that the graves were unmarked. I dedicated the book to the memory of people with intellectual disabilities who died confined inside mental institutions and were buried in unmarked graves, thus stripped of their identity forever. Who were they? We shall never know.
BLOOM: Who published the book?
Vincenzo Pietropaolo: It's published by Rutgers University Press. We couldn't get a Canadian publisher, though I made proposals to a number of them.
BLOOM: That’s a surprise given that the subjects are all Canadian.
Vincenzo Pietropaolo: Canadians have an inferiority complex about their culture. I'm very upset about it. I think there are two things at play with Canadian publishers. Publishing is a business and they think this book will be too hard to promote -- it won't make a lot of money. And the issue of intellectual disability is one that people don't want to talk about. It makes people uneasy.
BLOOM: When is it being launched?
Vincenzo Pietropaolo: The Canadian Association for Community Living has a conference next week in Whistler, B.C. and it's being launched there. There's a book launch in early December in Toronto and then we're trying to work out a cross-Canada tour in major cities.
BLOOM: Have you kept in touch with any of the people?
Vincenzo Pietropaolo: With a few, yes. I talk in the book about someone inviting you into their home and breaking bread with them literally – and sometimes only spiritually – and you can't help but be affected by that. These people are showing you their innermost feelings.
BLOOM: How did adults with intellectual disabilities feel about their lives?
Vincenzo Pietropaolo: Sometimes they weren't very expressive about that, but I could tell from observing them. I didn't ask them if they were happy or sad. Sometimes I'd spend an entire day with them. You don't take that many pictures, you go for a walk. You realize that they're just like anyone else. They're warm. You see personality traits that keep coming out when you spend enough time with a person. I would go in thinking “How will I talk to this guy?” And then you sit down and start talking and you just keep going. I remember meeting a woman who was working in a bakery. She told me she makes cupcakes and I asked how many she made that day. Most people would have responded “About 100.” But she turned around and counted every single one and said “87.” You have to respect that.
BLOOM: Did you find certain parts of Canada more inclusive than others?
Vincenzo Pietropaolo: I remember one Hutterite family where the question of their child being treated different than others never came up. He did everything everyone else did. He was playing hockey and he wasn't as fast as the others, but he was the one who came up with the idea to build the impromptu skating rink. It was just accepted in that community that you look after your family. So everyone contributed in their own way.
BLOOM: Were there other places?
Vincenzo Pietropaolo: There was Powell River, a small mill town in British Columbia, about four-and-a-half hours from Vancouver. They were a very progressive community in terms of support services and a high level of acceptance. It all boils down to individuals who are involved in running their communities. In the end, if you have half a dozen really committed individuals, they can make a big difference. There was a radio station in Powell River that interviewed me and every time they have a show, they have a person with a disability who co-hosts the program. Sometimes the person doesn't talk very much, but the main host includes him or her in the conversation. They're a part of it. I remember a school in Dartmouth, Nova Scotia where a child with a disability attends regular classes. I watched the other children and I realized they were learning as much from him as he’s learning from them.
Invisible No More is a 160-page hard-cover book with 100 photos and is available at all major bookstores. To purchase a signed copy, please contact Vincenzo at firstname.lastname@example.org.