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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Disability is part of my 'normal' life

By Jessica Geboers

When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.

My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it's normal for parents to worry about their children’s future, regardless of their physical or mental ability.

I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.

In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.

It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.

I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.

It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.

Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.

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Letting in the light

This piece made me tear up, reminding me of what it feels like to give birth to a healthy child while caring for your firstborn with a random genetic condition. It's hard to make room for "normal" parenting with number two, emotionally and practically, but so worth it. Thanks Jennifer! Louise  

By Jennifer Philp Zakic

It takes most people a few minutes of conversation before they realize my giant stroller is actually holding two children. My older son, Branko (above left), is always in the front, and he’s the one people tend to stare at. I’m perfectly okay with that, because I would also probably stare at a four-year-old attached to an oxygen tank.

If I’m talking to a stranger, I like to choose a perfect moment to reveal my 11-month-old daughter (right), informing them that there is, in fact, a baby girl tucked away in there. Ta-da! I love pretending that it’s really no big deal, like getting them out of the house safely was just so easy and natural and why would it be any different for me?

Of course, it’s not easy. It’s never easy, but I’ve come to redefine my definition of “easy” over the past year.

When I first discovered I was pregnant with my second child, Nina, life was slightly less complicated. We were aware that Branko had a genetic bone condition, but it hadn't quite manifested itself yet. He had only broken one bone so far. He hadn’t been intubated yet. He hadn’t yet been prescribed supplemental oxygen. We hadn't even accepted “special needs” into our lexicon of medical terms.

At first, I was happy. The pregnancy had a normalizing effect on me. The mammoth amount of energy I used to invest in worrying about Branko—his acute health, his long-term happiness, whether he would eat dinner that night—was quickly diverted into thinking about the new baby. Would she be as funny as he was? Would I be blessed this time around with a sleepy, snuggly, chubby newborn?

As the pregnancy progressed, Branko’s health slowly declined, culminating with a cardiac arrest when I was about five months pregnant.

During the hardest moments, I would forget about Nina. I was so consumed with all the negative thoughts—ones that every parent who has ever spent time in a children’s ICU has conjured. These dark thoughts would quickly fade away for a moment or two whenever I touched my belly. My daughter. I liked that someone was with me at all times.

I worried about the effect this would have on her. I was sleeping very little, eating whenever I remembered, and I would jump about seven feet whenever my phone rang. Once we were out of the ICU, Branko insisted on being held exclusively in one position: his bum on my baby bump, his head on my shoulder. Any attempt to change this position was met with crying, labored breathing, alarms going off, and nurses rushing into the room.

I remember a nurse who casually asked, “He’s not sitting on your baby, is he?” I lied to her, of course, the same way that I would lie to my husband about how much I had eaten that day.

I lied because I had started feeling guilty. I wanted to be pregnant, but I also wanted everything to be perfect, or at least, moderately okay. I was hardly able to take care of myself, and now, I was in the process of squishing a brand new baby's head. I really hoped she was okay, but at that point, I would have done anything to make my sick son feel even the slightest bit better.

In addition to my guilt, there was the pernicious elephant in the room, its presence magnified every time a doctor glanced at my stomach. A handful of people asked if I had genetic testing, and if so, did I get the amnio? Most asked out of concern, a handful asked with the faintest flicker of discernment, an expression that would come and go so quickly I could almost ignore it. I would usually rise to the occasion and offer the explanation that his mutation was “de novo” or spontaneous. As in, very random and not inherited, thank you very much. Can I offer any other non-relevant information on the health of my children?

When I told Branko's pediatrician I was pregnant, I was expecting the same sort of response. She instead provided something unexpected: Lightning doesn't strike twice.

I tossed and turned over this statement for days.

Lightning doesn't strike twice.

I wanted to take comfort in this, and I tried my best, but I couldn’t get over the fact that lightning, or in our case, a random genetic mutation, could absolutely strike twice. In fact, it could strike over 2 trillion times, one for each cell in the human body. Was I an irresponsible, misguided fool for simply believing that I could be one of those other parents, the ones who have babies with arms and legs that move properly, who have lungs that work, who have voices that aren't diminished by their lack of breath? At this point, the word luck wasn’t in our vocabulary any more. It was hard to stay positive.

I wanted so badly for everything to stand still, especially when it became time to think about the future. It was hard to dig out Branko’s old newborn clothing, so I simply chose not to do it. I was like a teenager hiding an assignment in the bottom of my knapsack to temporarily avoid it. I couldn’t even imagine having to leave Branko for a few hours to—you know—actually give birth to this baby.

With the days leading up to Branko’s birth, I tried all the tricks to make him arrive sooner. With Nina, I did all those things, but in reverse. I tried to keep her in there, safe and sound, as long as I possibly could, meticulously avoiding long walks, spicy food, and pineapple. My midwife was getting frustrated. She kept hilariously telling me to “relax,” even offering to induce any time at my request. But that was unnecessary. The labour was short and sweet and to the point, and we arrived back at the house just as Branko was finishing breakfast. He never knew we were gone.

Nina is now almost a year old, and she does not have a squished brain. She makes Branko—and everyone—absolutely and purely happy. I can't believe I was afraid to meet her.

Watching her over this past year has been bittersweet. She’s so incredibly normal; it’s both overwhelming and unfamiliar to me. I try to avoid keeping a mental list of some of the things she can do that Branko still can’t: pull her own socks off, hold a sippy cup with one hand, move from sitting to lying without heavy breathing or floppiness. It’s really hard not to compare, but I’m also thankful that I’m now the type of parent who wants to crack open the champagne whenever my baby throws toys across the room.

I don't believe that Branko came into our world for a reason. I don't believe that we were chosen for him. We aren’t “special,” and for the most part, this disease he has ravaging his body is no gift. It just happened, the way some people get sick and some people just don't. But I believe Nina gave us exactly what we needed during a very sad time. She cries along with him when he gets a needle; she makes him smile when no one else can. I don't say much about Nina, and I don't often brag about her. I like to think of her as that bit of perpetual light in our darkness. I like to think that she somehow provided that warm, comfy seat for Branko on purpose. I think that part was meant to be. 

Please follow Jennifer on her blog Branko Has Funny Bones.

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A twin's bond sparks brilliance

By Louise Kinross

Judith Scott was an acclaimed sculptor whose abstract pieces—combining fibre and found objects like an umbrella or bicycle wheel—show in galleries and museums around the world.

Yet for more than 40 years, her talent lay dormant.

Judith, who died 10 years ago, had Down syndrome, was deaf and lived most of her life in an institution. Ironically she was deemed too “retarded” to draw with crayons while there. Judith’s life changed at age 42 when her twin sister Joyce brought her to San Francisco and became her guardian.

Joyce enrolled Judith in Creative Growth, a community arts centre for people with disabilities where Judith found her passion.

Joyce’s upcoming book EnTWINed: Secrets From The Silent World of Judith Scott will be published in 2016 by Beacon Press. For seven years the girls lived together in a rural setting on the outskirts of Cincinnati where they were inseparable. At age seven, Judith was sent to an institution three hours away.

BLOOM: What was your early childhood with Judith like?

Joyce Scott: It was idyllic in many ways. We had three older brothers who had their own lives and because we were twins, our parents made this giant sandbox for us where we’d be safe. We played together in this enclosure and had a lot of experiences with nature and the physical world. Behind us were sheep pastures. It was a beautiful place to be children. We slept together and as we got a little older we went around the neighbourhood and played with other children.

BLOOM: What kind of personality did Judith have?

Joyce Scott: She was very loving and outgoing and interested in everything. We didn’t know she was deaf, and what came to be seen as behaviour problems—not coming when someone called her or not being responsive—was related to her deafness. She was very involved in the physical world and now, knowing that she was deaf, I realize the world of tactile sensation and of our touch was a lot more important to her.

BLOOM: How did you communicate?

Joyce Scott: Through signals and touch and she had a few sounds. She understood signals that we developed naturally.

BLOOM: How was her disability explained to you?

Joyce Scott: I don’t remember it being explained. Our parents didn’t even know what Down syndrome was, or have a name for it. I don’t remember realizing she was different for quite a long time, until she started being excluded. I just thought she was Judy.

BLOOM: Why was Judith sent to an institution?

Joyce Scott: She was seen as being more difficult. She’d figured out how to go to the back door where the screen door was locked and get on a chair and climb up and unlock it. She’d wander away and we’d call her and she wouldn’t respond. We had a bad experience when Judy was maybe six where we were next door with a lot of children on the porch and a little one…fell off and her mother had this idea that Judy had pushed her, which was untrue. She said Judy couldn’t come over after that. Our mom carried Judy a lot and she developed back problems. Our parents met with a pastor and a doctor and were told ‘you need to put her in an institution.’ They were told it was bad for the other children for her to live at home.

BLOOM: What was it like when she left?

Joyce Scott: It was absolutely horrendous for her and for me. I woke up and we slept in the same bed and she wasn’t there. I went looking for her and my mother said she was going to a special school where she would learn to talk. At first I thought she was coming back and I thought maybe I could do something to help to bring her back.

BLOOM: Did you visit?

Joyce Scott: It was this horrendous state institution that was something out of Charles Dickens. Terrible. We went regularly for a while, and she came home the first summer, but then our father had a serious heart attack and he died a few years later and that sort of changed everything. Initially she was three hours away but when we were 10 she moved to another place that was four-and-a-half hours away. We would go, but not as frequently. Our mother had a nervous breakdown and was hospitalized. It was very hard on her. She had a lot of guilt and shame about sending her away.

BLOOM: How did Judith influence you?

Joyce Scott: I’ve worked almost my whole career with children with disabilities and families. I was a pediatric nurse and a parent/infant specialist and I did home visiting with parents of babies up to age three who had a disability or were at risk for having a disability. It was an incredibly satisfying and meaningful career for me. So much of what my life has been has been deeply influenced by Judy. When I first finished school at Ohio State I got a job teaching at the state institution where my sister had been sent.

BLOOM: How did you decide to bring Judith to live with you?

Joyce Scott: I moved to California when I was 25 and I would go back to Ohio once a year to see Judy. Later on I was working as a critical care nurse to a family of a baby with medical problems. I became close with the family and went to meditation retreats with the mother. One was a six-day silent retreat. I’ve always been very busy and it was the first time ever that I was quiet. Every day I went deeper inside. Around the fifth day I felt like I came to my heart, my centre. I had this feeling that I was there with Judy and that our core was a central core that we shared. It was like someone turning on the light in a dark room. It became clear to me: ‘What on earth is she doing in an institution 2,000 miles away when she could be with us?’

BLOOM: How did she adapt?
Joyce Scott: It was completely unbelievable. She walked in the door like she’d come home and she went into the kitchen. There were dirty dishes and she looked at me and laughed and washed up the dishes and then she took her wet hands and wiped them down my body and laughed. She was always doing little tricks. She had a bedroom and she came in and took things out of her suitcase and rolled them up and put them in her dresser and put her shoes under the chair. She was completely at home—like she’d been waiting for me to realize she was supposed to be there. I had two daughters at the time and the 10 year old became best friends with Judy. She lived with us for a while and then I found her a ‘board and care’ home nearby and she stayed there. We saw her every day and she’d come spend the weekend with us at our house in the country.

BLOOM: How did you find Creative Growth?
Joyce Scott: I was looking at different programs and really not liking them. Some had cubicles and people would sit in them separating nuts and bolts. They were doing stupid, meaningless activities and it was isolating. I have a good friend who’s a psychologist and she told me about Creative Growth so I called and went to visit and fell in love with the place.

BLOOM: Was this a public or private program?

Joyce Scott: It was provided through the Regional Center in California, an umbrella organization for people with disabilities, so it was paid for. It was a program from nine to three.

BLOOM: When did Judith first start to show potential?

Joyce Scott: For about two years they were introducing her to different materials. She didn’t like drawing, painting or ceramics. She would draw, but not even look at what she was drawing. Eventually they began to think ‘Maybe this isn’t the right place for her.’ One day Judy was sitting at a table where a visiting artist was working with textiles. Judy took some threads and yarns and found some sticks on her own and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded. After that they gave her free rein to go to a materials room and pick out what she wanted. Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.

BLOOM: What did her art mean to her?

Joyce Scott: Without language, she couldn’t communicate her thoughts. Tom, the director of Creative Growth, felt she was finding her own language and finding a way to give voice to her feelings and her deep self. The sculptures are her way of telling her stories and speaking her truth. When people are in the presence of them they often say they get this feeling of such intensity and spirit inside them. They feel they’re pulsing with this life force. The idea that her sculptures were her voice—and her language, her paragraphs and sentences—makes sense to me.

BLOOM: How did she feel about the recognition she got?

Joyce Scott: She was becoming well known in ‘outsider art’ and museum circles and people would come to see her. She would usually be quite gracious and shake their hand and then go back to work. It didn’t mean much to her. When she finished a piece she would rub her hands back and forth, as if to say ‘That’s it, it’s done, good job’ and then she would point to the staff person next to her and point upstairs to indicate that the person could take the piece away. Within five minutes she’d start on something else.

BLOOM: You mentioned she had a first show at Creative Growth?

Joyce Scott: Yes. With that first show they brought her into the room where her pieces were on exhibit. These were pieces she hadn’t seen for months or years. The staff was hiding in the alcove, waiting to see how she would respond. She went to each sculpture and either patted it or blew it a kiss or waved to it. There wasn’t a dry eye. It was like she was greeting her long-lost children.

BLOOM: Her talent could have easily remained hidden.
Joyce Scott: I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ can and often do have great giftedness and great potential. I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.

BLOOM: What advice would you give parents on how to best support siblings of kids with disabilities?

Joyce Scott: Often the focus is on the child with disability and the sibling assumes a caretaking role that is more dominant than is healthy for their own self-development. I think it’s important to encourage brothers and sisters (and mothers!) to stay in touch with their own wishes and dreams. I think it’s important for parents to have special time to really honour the other child.

BLOOM: How did Judith die?

Joyce Scott: She was just about to turn 62. We had gone out to dinner and she seemed to have a stomach ache. She hated hospitals and would become hysterical if I took her to one, so I called my ex-husband, who’s a doctor, to ask what he thought. He felt certain it was just a stomach ache. So we went home and I was lying in bed with her and talking to her and she suddenly stopped breathing. In some ways it was such a gift that she died in my arms. But there’s another part of me that thinks maybe if I’d taken her to the hospital, things would have been different. However, when she was born she was given a life expectancy of 13 years and she’d lived a half century beyond that. So I need to focus on being grateful that she was with us as long as she was.

Learn more about the twins at Joyce Scott's website. The photo immediately below is of Judith's exhibit at the Brooklyn Museum earlier this year. Photo by Ruth Fremson, The New York Times/Redux.

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Understanding disability: Black, white or shades of grey?

This painting by Bryan Pearce is part of a 38-image collection called BBC's Your Paintings.

By Louise Kinross

I'm intrigued by how such divergent perspectives on disability can pop up on social media in the same day.

Yesterday a colleague sent me a link to Tom Shakespeare's essay series on BBC Radio 3 called The Genius of Disability. 

Shakespeare, a British writer and bioethicist, looks at the relationship between creativity and disability through a handful of disabled artists. "The stories I have found show that disability is no bar to success if an individual has talent and drive, and probably a fair share of luck," he says. Shakespeare holds these individuals up as role models for disabled people who have made "great creative contributions despite or because of their illness or impairment."

Something about the title, The Genius of Disability, hit me the wrong way. Isn't disability a hugely vast experience that varies from person to person, and even within a person, over time?  

One of the artists is British painter Bryan Pearce, who was born in 1929 in St. Ives, Cornwall and had an intellectual disability.

In his piece on Pearce, Shakespeare asks: "Does an artist have to be clever?" Then he questions what happens when a person "can't fully reflect on what they're doing... Can you make great art by accident?"

I know nothing about Pearce's disability, but to suggest that he couldn't reflect on what he was doing, or that the paintings you see on this page were created by "accident," is pejorative and patronizing. Perhaps Pearce didn't think about his work in the same way that a person with average intelligence would, but maybe his experience of the world gave him a unique way of seeing and depicting things.

Then I thought about Shakespeare's use of the word "accident," implying that what Pearce produced was somehow random.

And then I couldn't help thinking about how random or "accidental" a large part of talent is, as opposed to being something you develop through hard work, whether you have a disability or not (I know, no one wants to hear this. Everyone wants to believe that they "deserve" their success by working so much harder than others. Everyone wants to pat themselves on the back). A large part of success, I believe, comes from natural ability that a person is gifted with at birth. Yes, they have to develop it, but they start with the tools. Some people, because of the types of disability they have, do not start with the same tools. There isn't any justice in this.

Another artist Shakespeare profiles is Lucy Jones, a British painter with cerebral palsy and dyslexia. He notes that Lucy doesn't want to be "classified as a disabled artist." I thought this was interesting, especially since Shakespeare was suggesting that disability itself fuelled artistic genius.

Growing up, no one could understand why Jones couldn't read, Shakespeare reports. She did well in art but not in her other courses. At some point she got a device that allowed her to express her thoughts by dictating them, as opposed to writing them down, and Shakespeare says: "Now she was getting good grades and feeling like a real person."

Does academic achievement make one a "real person?" Does that mean the painter Pearce, with the intellectual disability, was not a real person?

It seems we often fall into this black and white way of describing disability. Some people, like Shakespeare, who has a form of dwarfism, describe it as an advantage, while others look at it only as a deficit. We want to pin it down, not see it as fluid.

At the same time I was looking at Shakespeare's essays, I saw this piece by a parent of two children with Down syndrome. The mom writes about attending a conference for people with Down syndrome, and how she couldn't help feeling like one of her daughters, who has more significant disability, was excluded. "Everywhere you turned there were presentations about teens and adults with Down syndrome who'd exceeded all expectations," she writes. This included people getting their driver's licenses, going to college and getting married. There were also "videos of dancers, musicians or athletes with Down syndrome." While happy for their success, where did her daughter fit in? Was this an event for high-achievers only, she wondered? Were people now being labelled within the disability community in a hierarchy of value? Was it possible that a person with Down syndrome could attend a conference about and for people with Down syndrome and feel invisible?

The author questions whether we're "trying to sell everyone a better, more desirable version of the child and their disability."

Which brings me to what I thought was a brilliant post by a person with autism and physical disabilities. It's about how "able" folk try to separate her from her disabilities. These are people who constantly tell her things like: "Don't let your disabilities become your identity" and "You're a person with autism, not an autistic person" and "Your disabilities don't define you."

The truth, she says, is that "however much I try to ignore them, my disabilities really do limit me." Why should she have to deny that part of her experience or pretend it doesn't exist? "When people dismiss that, they often end up blaming me for my limitations," she says.

Isn't that what happened to the mom who attended the Down syndrome conference only to feel her child couldn't measure up?

Rather than a source of creative genius, this woman with autism sees her disabilities as physical limitations and a brain that works differently from most. But she's not "giving up, showing low confidence or calling myself weak...After a lifetime of being told my disabilities are weaknesses, I'm being strong without denying them. This is empowerment."

Which brings me to an interesting discussion I participated in yesterday at lunch here at Holland Bloorview. It was about how advocacy skills can be taught to, and evaluated in, students training to work in children's rehab. In discussing advocacy in relation to children with disabilities, the term "self-advocacy" often comes up, and is held to be an ideal. The idea is that we can empower a person with disability, or give them the tools, so that they can speak for themselves. It's similar to our focus on independence as being the preferred state of being for people, with and without disability. 

But there will always be some children with disabilities who are not able to advocate for themselves (because they don't communicate in conventional ways or have multiple disabilities). They need parents and clinicians and others around them to be their voice. In these cases, has a failure occurred? If my child is supposed to be a self-advocate, does it mean that as a parent I've done something wrong, or not done enough of something, if he or she isn't?  

Which brings me back to our tendency to describe disability in black and white ways, to assert that it means this, or it means that, but not both. And to take such strong positions, as if we have to prove to the mainstream world that there is value in a life lived with disability. 

In discussing the painter Pearce, Shakespeare says "people with cognitive disabilities still have value and can do work of value."

He says it, but as an academic, and based on some of his comments, I'm not sure he really believes it, or believes it uniformly for all people with intellectual disabilities, regardless of ability.

Rather than seeking out famous, high-achievers like Pearce, I would rather Shakespeare had taken the time to find stories that show the value of a range of people, including those whose worth could only be shown through their relationships with others, not by what they can "do."  

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A social media blitz isn't friendship

By Louise Kinross

Yesterday my hubby sent me an e-mail with a link to this story about a 13-year-old Peterborough, Ont. boy with Asperger's. He invited 15 students to his birthday party and not one RSVP'd.

"I read this and started crying," he wrote, thinking about our son. We had a similar situation a few years ago when our son invited two "friends" from school to a celebration that involved going to see The Hunger Games and they didn't show. I remember sitting at our dining room table cutting cake with my other kids when my son asked "where" his friends were and "why" they weren't there. "Something must have come up," I said. We went as a family to the movie.

People who don't have kids with significant disabilities don't have a clue what this is like. It's completely outside their realm of experience. I don't think I would have believed the degree of isolation that can happen, especially in high school and early adulthood, to youth with more significant disabilities, or those that make social relationships challenging.

In 2012, Dr. Anne Snowdon's study of 166 families in three Canadian cities found that more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend. Is that possible? Growing up I spent hours with friends everyday after school.

Last year Sarah Keenan, life skills coach at Holland Bloorview, spoke about how research shows friendship is associated with life satisfaction and good mental health in the general population. On the other hand, loneliness negatively impacts the immune system and heart health.

Children with disabilities tend to have fewer friends and smaller social networks than their peers, Sarah said, after reviewing 56 studies. She referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”

Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.

On the weekend people were touched by the outpouring of social media support for the Peterborough student. After his mother posted about his friends giving him the cold shoulder, tweets poured in from sports teams, actors, singers and politicians, all sending him birthday greetings. And strangers and media came to his party at a bowling alley that night.

That's great, and I'm sure it was a huge boost to this boy and his family. But how will this translate into changes in the boy's daily life? What about the 15 students he wanted to come to his party, who didn't even respond? How will their ideas or behaviour change? This was a feel-good one-off—one tweet sent, one event attended. Inclusion for youth with disabilities is so much more complicated than that.

This morning I heard from a parent in Vancouver who sent me a link to a video about her son, with autism, and Club G—an elementary school's efforts to ensure he was included. Make sure you watch it. I was crying tears of joy by the end. This is the thinking behind Club G.

But then I thought about it and my pessimism returned. This is elementary school. Our own experience has been that authentic friendship is possible during those early years, when kids are receptive and a school makes disability awareness and inclusion a priority.

It's in the high school years that things break down—when the focus becomes much more academic, schools are less invested in character development, education for students with disabilities often becomes segregated, and teens themselves cringe to be seen as different.

According to a U.S. National Institutes Health Funded Study led by Holland Bloorview researcher Gillian King, the teen years are particularly difficult for youth with disabilities. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.

This is a deep, difficult cultural problem, not one that can be solved on social media.

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Letting go

By Madeleine Greey

“Okay ladies, here’s your homework. Figure out what you’re willing to let go of. Make a list. Then prioritize it over the first year of your daughter's independence.”

Gulp.

I looked over at Margaret and her jaw hung in awe.

I locked eyes with LIGHTS senior facilitator Laura Starret who had just dropped this bombshell. She returned my glare with a happy little smile that said “Good luck with this one!”

It’s that happy little smile that kept us going.

Margaret and I—two single moms—had signed on for a momentous task: assisting our adult daughters into supported independent living.

My daughter Krystal, 25 (above right), has Down syndrome. Her roommate Karen (above left) is 26 and has Kabuki syndrome. Both young ladies are bright, able, courageous and developmentally delayed. They knew they wanted to move out of home but couldn’t do it alone. Via LIGHTS—a program in partnership with Community Living Toronto that supports innovative housing options for adults with intellectual disabilities—our two families connected and figured this out.

LIGHTS is dubbed a Match.com for parents planning independent living for their adult children and on a cold, winter evening last year, Karen and Margaret, Krystal and I, all found ourselves at a LIGHTS meeting facilitated by Laura. In fact, we collided on a bulletin board. Each of us had placed a neon-coloured stickie on the “ready to move out in six to 12 months” section.

Krystal and Karen had attended the same high school and while they weren’t really friends, those stickies got them wondering if they could be roommates. They wanted so many of the same things, like a downtown, east-end apartment with laundry facilities that was walking distance from the subway and grocery shopping. Plus, they wanted a third roommate who didn’t have an intellectual disability but was their peer—someone who could be a role model and mentor and was interested in getting free rent in exchange for about 10 hours of support every week.

How did they know this you might ask? The answer lies in umpteen LIGHTS meetings, incessant planning and lots of visualization. 

Pragmatic and impatient, I found this process maddening, but did manage to spot magical balloons of progress float and pop along the way. Laura knew just what to say to get both of our daughters talking—unleashing a torrent of ideas, fears and dreams that neither daughter would have felt comfortable sharing had Margaret or I piped in. We all learned to listen and wait, until that fateful day in June when it was time to start hunting for an apartment.

PadMapper.com became our best buddy. An aggregate search engine, PadMapper provides listings in the neighbourhood of your choice. We got to know the rental market quickly. Seeing the apartments made it less abstract for Krystal and Karen who were better able to say what they liked and didn’t when standing inside the real thing. The more we looked, the better we knew what we wanted.

Laura had warned us that the process would jump into second—if not third or fourth gear—once we started hunting for an apartment. Margaret and I were quickly overwhelmed with rental applications, negotiating leases, credit checks and securing tenant insurance. It was a steep learning curve that landed us a lease on September 13th for a three bedroom, renovated duplex apartment a block away from Woodbine subway station. It seemed only apt to call it KK House (in honour of Krystal and Karen).

But KK needed their third roommate before they could move in. We started an active email campaign posting our ad throughout the disability community, U of T Housing, plus colleges offering disability studies or support worker programs. CVs began to roll in and we conducted half-a-dozen interviews at the dining room table of the yet-to-be furnished KK House.

Maggie, our chosen mentor, is a York grad student with no background in disability. She's into theatre and English and is a dramaturge and playwright. She found out about the job through her church.

On Halloween, Krystal, Karen and Maggie moved in. They doled out trick or treat candies to their neighbourhood’s little goblins and started to get to know each other over dinner. Boxes were unpacked, milk and butter went in the refrigerator and posters went on the walls. Margaret and I had done our homework and knew what we were ready to let go of. Everything was planned out but nothing had been put into motion until that night.

Of course, things were bound to happen once the independent living began. The smoke alarm went off, the toilet handle broke and there were squabbles over what was shared and what was not in the kitchen. Both Krystal and Karen expressed freedom from “The Tyranny of Mother” in private and individual ways.

We all expected some bumps ahead.

But what we didn’t foresee was the power of dinner together. Maggie, Krystal and Karen had agreed to planning, shopping and making three budget-conscious meals together per week. While brainstorming over recipe ideas, delegating shopping errands and manning the stove, the three have become a family learning a lot more about each other than food preferences.

Two poster boards went up in the kitchen: a monthly calendar where everyone entered their commitments outside the house and a big white bulletin board announcing the week’s meals and menu, along with quick questions and reminders to one another.

Maggie deftly straddles the dual role of mentor roommate and contracted employee/tenant. She has learned to recognize and mentor Krystal and Karen’s varying needs without becoming a caregiver. In other words, she shares a home with them, offers guidance and leadership, but has her own busy, independent life too. Margaret and I meet with Maggie weekly or bi-weekly to review, plan and strategize. All of us have come to realize that regular and thorough communication is the oil that lubricates this machine. Whenever there’s a problem, we all try to talk about it, no matter how uncomfortable and while we don’t always find instant solutions, progress is usually made.

Back to the homework Laura assigned months ago, that business about “letting go.” It’s been the single most difficult part of this project, hurting more than any one of those airless, suffocating budget meetings or the packing up of Krystal’s childhood bedroom and putting it in a moving truck. The grief ran deep and terrified both of us, bringing up painful memories of her father’s death five years ago.

Parenting a child with a developmental disability is one hell of a job. We invest years of pain and joy in the process and letting go of it doesn’t just happen because you complete your parental homework—or not. Every time my daughter accomplishes another independent task, be it turning off the smoke alarm or taking pride in a meal she prepares, I can let that thread between us fall a little slack while knowing where the real bond lies.

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