Look again: 'What I was teaching was about seeing'

By Louise Kinross

In 2007 photographer Brenda Spielmann began an innovative program at Holland Bloorview that brought together children with and without disabilities to take digital images. She knew photography was an accessible medium because her son Dylan (above with twin brother Kai) has a disability. More recently, Brenda told me she was starting a project that would involve taking mother and child portraits. Some of the pairs would include children with disabilities. I spoke to Brenda to learn more about why parents of kids with disabilities may want to consider photography—for themselves and their kids.

BLOOM: What is your favourite kind of photography?

Brenda Spielmann: I love storytelling, and storytelling to me involves portraiture and a very personal documentary style.

BLOOM: Why is photography a great art medium for disabled kids?

Brenda Spielmann: The reason I began the program at Holland Bloorview is that digital photography is so accessible to children with disabilities as a form of expression and a voice. In the old days, photography was done in the dark room and you stood over trays of chemicals to develop the film. With digital they can do it in their wheelchair and it doesn’t require a lot of dexterity. It allows them to enter the social world because they can take photos of whatever they want, just like everyone else, and post them on Facebook and Instagram and be part of a social conversation. To me it was this entryway that fights isolation that was so important. Regardless of the disability, there is often isolation.

BLOOM: How is photography possible for kids with little hand control?

Brenda Spielmann: Now it’s even more accessible because you can use an iPad with a large screen and an app that allows you to press anywhere on the frame to take the photo. The iPad can be secured with a tripod on a chair or on part of the frame of the chair. One girl in our program wasn’t able to use her hands at all and she became the director and would choose how to compose the shot and said ‘press the button now.’

BLOOM: What was the name of the program?

Brenda Spielmann: I called it Light Writers. When you split the word photography in Latin and Greek, photo means light and graphy is drawing or writing. Photography means to write with light. So I said we’re the Light Writers.

What I was teaching was about seeing. We get so used to everyday life that we take things for granted, or we’re jaded, and we stop seeing. I taught them to see everyday life in the smallest details.

BLOOM: How can photography be beneficial for parents?

Brenda Spielmann: It can be used as a form of expression and to document change in your child. Photography has a wonderful element of surprise. When looking at the photo afterwards,  it may reveal something that you had no idea about.

If you have a child who is non-verbal, the child can take photos of things and objects and you can use that as a tool of communication.

BLOOM: I was thinking that we don’t often see images of kids with disabilities around us. At least in the media.

Brenda Spielmann: I have been thinking about this as well. I think we need to look at images of disability more and more so that they become normal and everyday and people become desensitized and comfortable with them.

BLOOM: Is that part of the purpose of your new mothering project?

Brenda Spielmann: The main thing for me with disability is that it’s about isolation: isolation from the point of view of the person with a disability and the parents. And being invisible. It’s ‘hush hush.’ It’s still stigma. People become shunned in a way. It’s not talked about but it does happen.

I want to photograph mothers of children who are able and disabled and see if something is different. I don’t have a plan on the outcome, I just have an idea.

My idea is to take very traditional portraits. I’m thinking in terms of the whole field of renaissance paintings that glorify the mother, and seeing what comes up because children move and moods change.

People talk about the child with a ‘problem.’ I just want to show the beauty and love of it.

BLOOM: What do you hope people take away?

Brenda Spielmann: My goal ultimately is that the relationship between the mother and child is beautiful—so that a mother of a child with a disability produces the same feeling as a mother with an able or ‘normal’ child as people call it.

If you’d like to participate in Brenda’s mothering portraits, or to learn about her workshops on photographing your family, e-mail Brenda at brenda.spielmann@gmail.com

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'What we saw was value'

"Incompatible with life? What we saw...was value, beauty, potential, our precious daughter."

Listen to New Zealand photographer Rachel Callander talk about how her daughter Evie inspired her travels across the country to meet with families with children with chromosome differences. The result is a photographic art book called the Super Power Baby Project. 

The real deficit, Rachel says, is not to be found in children with genetic conditions, but in a culture that fails to embrace their humanity. This woman rocks her talk.

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What does a 'blind' photographer see?

By Louise Kinross

When Mark Nicol was a kid he picked up his dad’s camera a couple of times but was frustrated because he couldn’t see through the viewfinder.

That’s because he was born with vision loss: he sees one-tenth the resolution of what someone with regular vision sees.

So it may be surprising to learn that today Mark’s passion is photography. And his images are part of an exhibit called The Mind’s Eye at the Canadian National Institute for the Blind (CNIB) in Toronto.

“The beautiful thing about photography is it’s a creative outlet,” Mark says. “No one is saying I have to take the same pictures or do the same style as someone else. Being creative means finding your own way.”

The CNIB exhibit includes pictures from photographers who are blind or partially sighted from across Canada. “There are many misconceptions about vision loss, but none as pervasive as a life of complete darkness,” says Len Baker, executive director and regional vice-president Ontario. “We wanted to challenge this stigma.”

Mark says he got his first camera in his 30s, when digital cameras came out and he realized he could see through the LCD screen. “I thought I’d get it to take goofy snapshots of friends but I started using it creatively right away and was hooked.”

One of the ways Mark makes photography work for him is to have an eyeglass prescription built into his viewfinder so he can take his glasses off and put the camera right up to his eye. “I’m still only seeing one-tenth of what someone with good vision sees, but as far as I’m concerned, things are as clear as they can get.”

Another way he adapts is to use auto-focus. “In the old days before our current round of digital cameras, a lot of photographers were focusing manually by turning a ring on a lens. I can’t see well enough to do that. Mastering my auto-focus system, and knowing when I can count on it and when I can’t, has been crucial.”

Mark, who lives in Victoria, B.C., says he’s a generalist who loves shooting everything from landscapes and architecture to pets and portraits. “I also adore doing travel photography and I have a little studio in my garage where I do some product work.” The photo above of St. Peter's Basilica in Rome is his (please click on it to see it in its entirety).

Mark says he’s not sure that the images he produces are different because of his vision loss, but his method of taking them is.

“I’ll walk the scene a lot before I take a picture and explore my subjects differently than someone who has better vision.”

Mark says people assume that vision loss is the same for everyone, but in fact is very individual. “There are people in this exhibit with a range of vision and with completely different types of vision from what I have.”

He notes that there are photographers in New York City who work without any sight. “They’re in a photography studio and they sit a person down in a completely dark room and they set the camera on a tripod. They open the shutter and they walk over with various flash lights and they actually paint light on the person, feeling the person’s face and getting a sense of where the person’s limbs are. At the end of the session they have a picture of a person painted with light. It’s a completely different approach.”

He encourages parents of kids with vision loss to let their kids try photography. “As a visually impaired person figuring out photography, you realize a lot of it is simple problem-solving: ‘Mom, I can’t see if my picture is in focus.’ So you have to do some problem-solving. I’m amazed at the incredible images people take who have much lower vision than me, or no vision. Either you solve the problem or you come about it backwards and maybe you don’t solve it, but you take it in a different direction with a photo where that problem isn’t an issue anymore.”

The Mind’s Eye exhibit is on at the CNIB at 1929 Bayview Avenue in Toronto. Friday May 22 from 9 a.m. to 4:30 p.m. is the last day. 

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Beauty exposed

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”

By Louise Kinross

Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered seating and [medical students] watched. I was looked at as spina bifida, not as a person.”

That early indignity fuelled Steve’s desire to shoot portraits where he’d give adults with spina bifida “a choice about how they wished to be looked at and what they wanted to show.”

The result is Front to Back, a series at Strange Beauty, this year’s Tangled Art & Disability Festival at 401 Richmond St. W. in Toronto. “The idea is that these are whole people,” Steve says. “They have a whole story to tell, just like a book, which you read from front to back.”

The back has particular meaning for people with spina bifida, because it’s the spot where surgery is often needed to push part of the spinal cord, which doesn’t grow properly in utero, back inside and close the opening. Due to nerve damage, many people with spina bifida use wheelchairs.

In addition to a traditional portrait, each subject in Steve’s exhibit has a second image of their exposed back, which in some cases includes surgical scars. “It was an opportunity for them to show off their back and for me to light and photograph it as beautiful,” Steve says. “It’s stark and out there. These people were brave. Front to Back is a path to a sense of dignity and control over what happens to us. Audiences will see people first.”

The exhibit includes moving comments from each subject on why they participated.

“This is the scariest thing I could ever do. I had to do it for myself. It was time to expose something that all my life I had found ugly, embarrassing, humiliating. That’s the gift we’ve been given with this project—the opportunity to completely expose something that all our lives we have been hiding.”

Make sure to visit both Gallery 44 and Abbozzo Gallery in 401 Richmond St. W. Steve will be giving a talk on the exhibit on April 25 from 3:30 to 4:30 p.m. The building is full of Strange Beauty exhibits and is well worth the visit. Click on these images to see them larger. And you may recognize one of the models at the exhibit!

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Who, and what, is perfect?

By Louise Kinross

Icelandic photographer Sigga Ella created a series of portraits of children and adults with Down syndrome to question whether a future without genetic diversity is desirable. Her exhibit First and foremost I am has been shown across Iceland and is moving to the Warsaw Festival of Art Photography in Poland next month. Please click on the photo above to see it in full. We interviewed Sigga.

BLOOM: What did you hope to convey in your portraits? 

Sigga Ella: To see the beauty of mankind we should celebrate the diversity. The reason I did this project was because of [a] radio interview I heard. They were discussing the ethical questions we now face—that we can choose who gets to live and who doesn’t, as the aim with prenatal diagnosis is to detect birth defects such as Down syndrome and more. Where are we headed? Will people choose not to keep an embryo if they know it has Down syndrome? I had an aunt with Down syndrome, Aunt Begga. It is very difficult for me to think about the elimination of Down syndrome and her at the same time.

The title of the project comes from an article about these ethical questions written by Halldóra Jónsdóttir, a 30-year-old woman with Down syndrome. She is a student, works at a library, is an amateur actor, musician and much more. She is one of the people featured in the project, as is her article.

BLOOM: The facial expressions and body language are each so unique. How were you able to capture the essence of each one?

Sigga Ella: I spent some time with each person so I could show, as much as possible, who they are. Each of the photoshoots was unique, lasting from one to three hours. Some of the models I met before the shoot, but some I met for the first time at the studio. I wanted each photograph to show us a person with his or her own special characteristics. I wanted to bring out their uniqueness as individual human beings and the fact that by no means are these people all the same, even though they share the same syndrome. For most of the sessions I was alone with the model, so we talked, but the subjects discussed were as diverse as the models themselves. They are all different ages and at different places in their lives. My goal was to show diverse personalities.

BLOOM: How did you find your models? 

Sigga Ella: I contacted the Icelandic Down Syndrome Association and through them and some friends (and friends of friends—Iceland is a small country), I managed to find 21 people of every age (nine months to 60 years) [with an even] gender ratio. Everyone I asked agreed to participate and working with them was really enjoyable and rewarding.

BLOOM: What was the reason for photographing them with the same wallpaper background?

Sigga Ella: I was looking for simplicity and I wanted the project to be as one whole but make the subjects stand out. I wanted to [emphasize] that all flowers can grow and flourish together.

BLOOM: Can you describe your experience having an aunt with Down syndrome?

Sigga Ella: My aunt Bergfríður Jóhannsdóttir was 29 years old when she died of a heart defect. I was 12 years old when she died. She was the youngest of 12 siblings. For most of her life she lived with my paternal grandparents and my aunt Herdís Jóhannsdóttir. When my grandparents died, only three months apart…she moved to an assisted living home. She spent every other weekend and summer vacations with Herdís who was like a second mother to her. Herdís always reminisces about Begga's sense of humour. They used their summer vacations to travel the country and visit their siblings. Begga loved spending time with her relatives. Begga enjoyed travelling as well as working with her hands and she did a lot of cross stitching. We were good friends and I have a lot of good memories with her. We did puzzles together and could watch a video about the legendary twins Jón Oddur and Jón Bjarni endlessly. She was the youngest of 12 siblings and I was the youngest of seven so I guess we related to one another in that way.

BLOOM: How do you feel about testing for Down syndrome and the high rate of termination?

Sigga Ella: I am not against prenatal genetic testing for abnormalities but I think we need to stop and think [about] what’s next. In the years 2007 to 2012 there were 38 fetuses with a heightened risk of Down syndrome in Iceland and in every case the pregnancy was terminated. I think it’s necessary to open the discussion and educate people more about Down syndrome. It’s not a disease or a flaw. Parents of children with Down syndrome, just like parents of healthy children, wouldn’t exchange them for anything in the world.

BLOOM: Why is diversity valuable, including differences in ability?

Sigga Ella: We are all unique, that is valuable, and we can all learn from each other.

BLOOM: Where is the exhibit on display?

Sigga Ella: It is currently open at the Reykjavik Museum of Photography. The next exhibition is at the Warsaw Festival of Art Photography in Poland from May 15 to June 15.

BLOOM: Why did you choose to call it “First and foremost I am?”

Sigga Ella: The title of the project comes from an article I found on the Internet which Halldóra Jónsdóttir, a woman with Down syndrome, wrote. I contacted her and asked if she wanted to be part of the program. She said yes and she's one of the people featured in the project, as well as her article:

“Hello. My name is Halldóra. I read this article in the newspaper the other day that caught my attention and at the same time made me angry and sad. There was this woman who wrote something about how people with Down syndrome should not exist. Therefore I would like to share my opinion. I have Down syndrome but FIRST AND FOREMOST I AM Halldóra. I do a million things that other people do. My life is meaningful and good because I choose to be positive and see the good things in life. I go to work, attend school and have hobbies. I enjoy spending time with my friends and family and I like being around people.

“In my world there are all kinds of people, both old and young, disabled and non-disabled. It has taught me a lot and I can see that many of us have some kind of difficulty that we are battling, both physically and mentally. That’s just how life is—it’s not more perfect than that. And it doesn’t matter if you are young or old, rich or poor.

“So I thought: Who is perfect? Who can say that we who have Down syndrome are worth less that anyone else? We are all different and would it be so great if we were all alike?

“My opinion is that it is much more fun that we aren’t all alike, because we can learn so much from people who are different from ourselves. I like learning from others and you are free to learn from me. I choose to enjoy the life I was given, to be happy with what I have and make the best of what I’ve got. It’s not a bad life, or what do you think? This is my opinion.”

BLOOM: What reactions have you had to the series?

Sigga Ella: First and foremost has had amazing reactions. For that I am really grateful. It has been featured in Icelandic newspapers, magazines and on radio. I have put up this exhibition six times in different parts of Iceland. It has also been featured in international media like CNN, Huffington Post and Fstoppers, [a photography news website]. I’ve had amazing feedback from people all over the world. That means a lot to me.

Photo below by Daniel/Visir. 

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Anne Geddes finds a new focus: 'deceptive strength'

By Louise Kinross

Today is World Meningitis Day and Australian photographer Anne Geddes (right) is launching an e-book of photos of children from around the world who've lost limbs and digits to the bacterial infection. It's called Protecting Our Tomorrows and Benjamin, 15, above, with his parents, is one of her models.

Geddes, known for capturing the innocence of babies, says this project is about showing the beauty and resilience of survivors. (See our earlier BLOOM interview). Meningococcal disease is a deadly bacterial infection that inflames brain and spine tissue and infects the blood.

Geddes says she knew she'd achieved her mission when an eight-year-old boy looked at his photos and said: "For the first time, you made me proud of my amputations."

To tie the photos together, Geddes chose the theme of birds' nests.

"I decided to link all of these images in a really subtle way to what a bird's nest represents," she says. "Hope and protection and family and new beginnings. And, more importantly, deceptive strength: nests hold their elements and survive even though they look so fragile."

The project also aims to raise awareness of the importance of vaccinations and quick medical attention if your child has the symptoms of meningitis: fever, vomiting, headache, a stiff neck, sensitivity to light and drowsiness.

Capturing the children's differences in a way that emphasizes their wholeness was a challenge, Geddes says. "I didn't want to portray these children in a way that was a shock. I wanted the viewers' first reaction to be 'what a gorgeous little girl.' When you're with these kids for more than five minutes you just forget that they don't have legs, or arms, or both."

The children are from Australia, the United Kingdom, Ireland, Spain, Brazil, Germany and Canada. The project is funded by Novartis Vaccines and Diagnostics. The e-book, which includes the story of each child, is exquisite.

 

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Anne Geddes' lens reflects resilience

Australian photographer Anne Geddes is known for capturing the innocence of babies in bumble-bee and acorn costumes that replicate life in nature.

But her latest project it not about innocence. It’s about resilience.

Geddes is photographing a dozen children and youth from around the world who’ve lost limbs and digits to Meningococcal disease—a deadly bacterial infection that inflames brain and spine tissue and infects the blood.

Geddes says she knew she’d achieved her mission when an eight-year-old boy looked at his photos and said: “For the first time, you made me proud of my amputations.”

Capturing the children’s differences in a way that emphasizes their wholeness was a challenge, Geddes says. “I didn’t want to portray these children in a way that was a shock. I wanted the viewers’ first reaction to be ‘what a gorgeous little girl.’ When you’re with these kids for more than five minutes you just forget that they don’t have legs, or arms, or both.”

To tie the photos together, Geddes chose the theme of birds’ nests.

“I decided to link all of these images in a really subtle way to what a bird’s nest represents,” Geddes says. “Hope and protection and family and new beginnings. And, more importantly, deceptive strength: nests hold their elements and survive even though they look so fragile.”

She describes a particularly magical moment when photographing a boy who initially sat down in the room with his hands behind his back.

“After about five minutes he brought his hands out and climbed on the box and said ‘I’m going to do a yoga pose.’ I ran back to the camera and he did this lotus position and put everything that was ‘wrong’ up front—his toes and his hands—and stared into the camera. It gave me the tingles and my hand was shaking while I was shooting, and then it was over.”

The project aims to raise awareness of the importance of vaccinations and quick medical attention if your child has the symptoms of meningitis: fever, vomiting, headache, a stiff neck, sensitivity to light and drowsiness.

The images also promote the beauty of survivors. “I want this series to transcend time,” Geddes says. “It will be this series of beautiful children who have disabilities, but it doesn’t matter.”

An unexpected benefit is the sense of community it generates for participants. “We were shooting one girl from Spain in the morning and a little fellow from Germany in the afternoon, and they crossed paths at the hotel and apparently she turned to her parents and said: ‘He’s just like me.’ This made me think the series will also get the message out that these children are not alone.”

Viewers will discover subtle elements of birds’ nests in the images—an illustration, a piece of twine tied around the waist or feathers in the hair. The children are from Australia, the United Kingdom, Ireland, Spain, Germany and Canada.

The photos will be published in an e-book on World Meningitis Day April 24. The project, Protecting Our Tomorrows, is funded by Novartis Vaccines and Diagnostics. Bernadette, above, and with her mom below, is one of the participants.

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Tell your own story

A research project at Guelph University in Ontario helps women write their own storyline about what it means to have a disability.

In a three-day workshop called Project Revision, female participants aged 20 to 70 collect footage, music and still photos. They write out the story of their own disability, then edit everything together into a three-minute video. Along the way, they receive constant instruction, guidance and technical support.

At the project’s end, the videos are shared with health-care professionals. Eventually, the researchers hope to share them with the public.

Researcher Eliza Chandler (photo above) created her own digital story when Project Revision began. In her work, Eliza, who has cerebral palsy, portrayed the initial anxiety and shame – and eventual pride – she felt about her disability while attending university.

She says creating a story helped her to express ideas and feelings that she wouldn’t typically have been willing to discuss.

That’s why she believes that digital storytelling can be useful not just to adults, but to children with disabilities and their families.

“As a child growing up, disability wasn’t something I talked about with my family,” Eliza says. “It was obvious it was there, and we dealt with it, but we didn’t really talk about it. If I were to have experienced something like this with my parents when I was a child, I think it would have been really useful and helpful to open up tough conversations.”

Digital story making can also be an effective outlet for children who don’t have a strong command on language. They may be better able to access and share their feelings through pictures or music or tone of voice, Eliza says. And kids are often tech-savvy.

Creating a video about disability may be useful for parents and children.

“Everybody can make a video, and I really do mean that…” Eliza says. “The end product is accessible to a lot of people. Most people can find some sort of entry point into the digital stories.”

Eliza feels the process of digital story-making is an opportunity to alter common depictions of disability.

Too often people with disabilities are portrayed in the media as being pitiful, sick, shameful or regrettable. However, given the chance to represent themselves, Eliza says a different picture emerges.

So far, many participants have framed their disabilities as being "generative" – as adding something to their lives rather than taking away. While the women involved have not always shown pride in their disabilities, Eliza says they have presented them as a catalyst for new and positive things – like an improved perspective or a new relationship.

The stories are truthful and multi-dimensional, a necessary foil to the conventional depictions that are currently so pervasive.

“With a real story, [participants] are able to represent the lived experience, which is much more nuanced than a straightforward stereotype,” Eliza explains.

“It’s not a as though someone’s making an argument you can counter. It’s their truth. That’s really powerful, I think. And really necessary because these are stories that aren’t usually represented.”

Story by Megan Jones

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More about Pauline

A couple of weeks ago we ran an interview with Rick Guidotti of Positive Exposure. Rick – a photographer who used to shoot the world's top models for companies like L’Oreal and Yves Saint Laurent – now travels the globe photographing children with genetic differences. His mission? To “(change) our ideas of normal."

I went into Positives Exposure’s online gallery to choose a photo to run with the interview. Out of hundreds, one jumped out at me. It was of a girl in glasses and her expression conveyed spunk, grit and charm. I asked for this image but was initially sent a different one. I went back to ensure we got ‘our girl.’ It arrived with the name The Amazing Pauline!

We ran the blog and it was only after that I learned that Pauline (photo right) had died five years ago.

I asked her mom, Catherine, to tell us a bit more about her daughter.

Pauline Wells Burzio was full of life and mischief! She loved her friends, school, sports and singing in the church praise band. Living with 18p-, a genetic condition, she endured many surgeries. She died in 2007 at the age of 13 due to a brain bleed after heart surgery. She is survived by her family and three awesome brothers: Ashton, JB and August.

She's also survived by her first ‘best’ friend – Rebecca (photo left above). Says Catherine: "Our families met in 1999 at the Chromosome 18 Registry and Research Society's annual family conference. It was the first time both of our families attended and we hit it off from the start. Pauline was five years old and I think Rebecca was three, but they became fast friends. Rebecca still calls Pauline her first friend."

Pauline’s family lived in Virginia and Rebecca’s family lived in Maryland, so they split the two-and-a-half hour drive by meeting in the middle – for lunch or a weekend outing.

“We tried to visit face to face as often as we could,” Catherine says.

Rick sent me this photo of the pair. You'll notice that Pauline isn't wearing her glasses in this one.

Catherine still volunteers for the Chromosome 18 Registry and Research Society that brought them together. You can read more about Catherine and Pauline here.

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'That quality we add is humanity'

Rick Guidotti spent years surrounded by conventional beauty ideals. He worked as a fashion photographer, shooting all over the world for companies like L’Oreal, Revlon and Yves Saint Laurent. But one day, his outlook changed. He spotted a girl with albinism on the street and was struck by her beauty. When he researched the genetic syndrome in medical textbooks, he was put off by the dehumanizing images he saw. So in 1997 he started Positive Exposure, an arts organization that works with individuals living with genetic difference. Now, he works full time photographing and advocating for children with genetic syndromes.

BLOOM: How are the visual stories you tell about these children different?

Rick Guidotti: The images…that I was force-fed when I first started Positive Exposure were images that are typically used in medical textbooks: pictures of kids up against walls in doctors’ offices with a black bar across their eyes, pretty much being portrayed as a disease as opposed to a kid.

I understood the importance of these images to show health-care providers how a condition presents itself, but nobody ever looks like that! I thought, “There has to be another way that we can present the same information in a photographic image but add another quality.”

That quality we add is humanity.

BLOOM: How did you learn to see beauty differently?

Rick Guidotti: That’s something where I don’t fully understand what happened. Walking down Park Avenue I saw a kid waiting for a bus and she was beautiful. She had albinism, so was never included in (the) beauty standard. I realized instantly that there was so much more beauty out there. What terrified me was I wondered how many months I’d walked past that girl and didn’t see her.

BLOOM: Had you worked with people with physical differences before Positive Exposure?

Rick Guidotti: No! As a fashion photographer, not at all. I never even knew anybody with a genetic syndrome in my life!

BLOOM: How can Positive Exposure’s images help to fight our fixations with beauty ideals?

Rick Guidotti: By giving people permission to see beauty and to interpret beauty in their own right. Not to see a beauty that’s dictated by industry’s ideas of what’s acceptable, but to judge for yourself. This is not inner beauty. I don’t believe in that. I’m as shallow as it gets. These kids are gorgeous, we’re just not allowed to see it. But these images give us the freedom to see it and it changes everything.

BLOOM: Have you noticed a difference in kids after they see their photos?

Rick Guidotti: Oh my, across the board! I first started off with a girl named Christina with albinism who had been teased her whole life for her difference. Even though she was stunning, gorgeous, she walked in with her shoulders hunched, her head down, no eye contact. She had zero self-esteem. But then photographing her and showing her her magnificence, like “Look at yourself!” I watched her just transform in front of the lens. And it happens every time.

BLOOM: Why is it important for people to see these images?

Rick Guidotti: I can shoot photos of a kid in my studio and they can see they are amazing. But by the time they leave the studio and make their way down Park Avenue, five people stare at their wheelchair or their birthmark, or somebody whispers or giggles or points or looks away. Their empowerment breaks down immediately. We realized that what we need to create are opportunities to make the idea of celebrating (diversity) relevant to the public at large.

It’s so important to bring these images to the public in many different ways, so that people have opportunities to really approach them. Because once you approach these images, you’re no longer afraid to look at them. You reach out, not because somebody has a difference, but for humanity, to a person. The fear is broken down.

Interview by Megan Jones. Full story in the July issue of BLOOM. Rick calls the photo above: The Amazing Pauline!

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The beauty of difference

Donna Thomson at The Political Caregiver posted this morning on a Ted Talk by fashion photographer Rick Guidotti, who travels the world showing the beauty in difference: From stigma to super model.

It began when Rick started photographing children with albinism, who had been shunned and teased because of their different appearance.

It grew into a project called Positive Exposure, which focuses on children and adults living with genetic conditions. Rick does photo shoots at annual support group conferences for children and adults affected by genetic conditions.

"Each individual living with a genetic difference desires to be viewed first and foremost as a human being," is his message.

I love this!

The organization also goes into public schools to educate students about our common humanity: The Pearls Project.

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Sit back and enjoy the ride!

View 100 stunning photos and 13 videos that chronicle life at 12 Easter Seals camps in eight provinces across Canada. Twenty-five videographers and photographers and one editor put the multimedia project together as a PhotoSensitive exhibit. This one is of a camper on a zip line at Camp Squamish in British Columbia. Taken by photographer Andy Clark. Trust me -- Kids Who Can is breathtaking.

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Kids Who Can

Check out Kids Who Can, a black and white photo and film exhibit that captures daily life at 12 Canadian Easter Seals camps. This PhotoSensitive project, sponsored by Canon Canada Inc., runs from March 6 to 16 at the Allan Lambert Galleria, Brookfield Place, 181 Bay St. in Toronto.

“It’s the best camp in the world,” says Kyla Young, above, at Camp Tidnish in Nova Scotia. “I love it. I’m going to go until I’m too old. And when I’m too old I’m probably still going to show up.”

Photo by Scott Munn

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Filmpossible fever

Gabi Cherng and Gavin Daley, second and third from left, were recognized at the filmpossible awards last week as the stars of the first-place entry in the photo category -- Lucky fin love -- and the I can be me! video, which won the Cisco Visibility Award.

They accepted the first award for Toronto photographer Annya Miller, who was unable to attend. Their submission included the comment: "Left hands are so over-rated!"

Holland Bloorview's filmpossible is an online contest where filmmakers and photographers submit videos and photos that bring visibility to disability.

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Memories of camp

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At the barre

I came across this cool photo by Jamie MacDonald of an accessible ballet class we wrote about last year: Katie's ballet dream comes true.

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Get your cameras ready

This contest is open to Canadians. Read more at filmpossible.

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Snapshots of humanity

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 vpietropaolo@gmail.com.

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Enter filmpossible!

Ever wish the world could see your child through your eyes?

Here’s a challenge for our Canadian readers – and their kids.

Enter filmpossible – Holland Bloorview’s online video contest.

Create a video under two minutes that brings visibility to disability. Tell a story. Dispel myths. Celebrate what our kids bring to our lives. Winners will be determined by a panel of celebrity judges and online public voting. First prize is $5,000.

I can’t wait to see your entries! Louise

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The big picture

Check out this gorgeous photo series of the Paralympics by the Boston Globe.

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