'Why do you love Jacob more than us?'

The Boy Who Can is a story about my friend Marcy White’s perseverance, creativity and courage in the face of her son Jacob’s life-threatening genetic disorder. The book begins with this “Letter to my Daughters,” Marcy’s twin daughters Sierra and Jamie (all above) who are not affected. It describes the natural hurt siblings can feel when so much of their parent’s time is taken up attending to the child with disability. An important message for all of us. Thanks Marcy!

Dear Sierra and Jamie:

You are too young for me to share this with you now but one day, when you are older, I will tell you how my heart hurt when you asked me why I loved your brother more than you. Your questions caught me off-guard and I’m not sure I expressed myself properly. I desperately need you to know that it is not true.

Being a parent is a constant juggling act, there are always so many balls in the air at risk of falling down and crashing to the floor. Parenting in a household with a “differently-abled” child like your brother is even more of a challenge, simply because his needs are different.

Jacob can’t speak so he doesn’t ask me to play with him. You do. Sometimes I feel guilty for spending more time with you, my mobile and verbal twins, than I do with your brother, who is dependent on others for absolutely everything.

I struggle with balancing my time between all my children. I am constantly asking myself how I can meet your needs without feeling that Jacob is constantly left out. At eight years old, you know so much about disease, more than any child your age should have to comprehend. You are aware that Pelizaeus-Merzbacher disease (PMD) is carried on the X chromosome and that you have two healthy Xs but Jake has a sick X that causes his PMD.

You understand how PMD affects your brother, how he can’t ask me a question, sit by himself or walk. You know that he can’t eat like you do, and needs to be fed with the tube that was surgically implanted into his stomach when he was a few weeks old.

Everything is so hard for him, while you girls can ride your bikes, dance and eat the things you help me bake.

Although it may seem as if Jacob and I spend a lot of time together, relatively little of it is “fun” time, and in fact, we have little time alone during the week. We have our special allotment on Saturdays, but as you know, that it never starts off as a fun morning.

As Emily’s overnight nursing shift nears its end, I try to make sure your breakfast is prepared and a supply of bibs is packed in a bag for Jacob, all his things organized and easily accessible as soon as the front door closes behind her. I run through my mental list of things that need to be done before the craziness begins in earnest.

From the moment Emily walks out of our house until your big brother is fastened in his car seat, you listen to Jacob crying and screaming. Our neighbors must wonder what awful torture I am inflicting on him. And I see you sitting there with your hands over your ears, trying to block out the noise. When you realize that won’t work, you begin to dance around in front of your brother in an eager attempt to console him and elicit a smile. You probably don’t realize this, but I stop what I’m doing and watch you. My heart swells with pride when I see you trying to help Jacob but I also feel like crying—I wish you didn’t have to watch your brother struggle so hard to make himself understood.

You should be able to enjoy a lazy weekend morning at home in your pajamas, cuddling in bed with your parents, not watching us run up and down the stairs, organizing your older sibling’s medical paraphernalia. Unfortunately—for all of us, but especially for Jacob—this is not what our life is like.

In order for me to hang out with Jacob, we have to leave our house. He screams incessantly when I try to play with him at home while you are present. As soon as we leave, he calms down. I have his full attention and together we can enjoy the outing. Maybe Jake knows that I can’t tune everyone else out at home and that he is forced to share my focus with you, the cats, and all the other millions of things that distract me. Regardless of the reason, when we are out, alone, we have fun. It’s “Mommy and Jakey” time.

And we have our weekly swimming. You know how your big brother loves the pool and has learned to swim somewhat independently, surprising the lifeguards and making us all so proud of him. If I’m nearby and not in the water with him, Jake complains and is unable to enjoy the activity; however, if I am in the water, reminding him to move his arms and kick his legs and encouraging his effort, he beams. He giggles and I feel his arms tighten around my neck in a delicious and intentional hug.

After our 45-minute swim, as we are getting dressed and ready to leave, my back aches. Holding him, walking with him on the ramp into and out of the pool, is taxing on a body that has endured more lifting and twisting than it can handle. But watching Jake swim the length of the pool, seeing his little legs break the surface during a kick and listening to his squeal of delight when his hand touches the wall at the end of a lap, is worth every pain.

After those outings, I return feeling like I have spent some quality time with my first born, the child I often believe does not get enough of my undivided attention.

It is so much easier for me to play with you, my beautiful darlings. You express your thoughts and questions so eloquently, and you don’t need me to help you move your leg if it slides off the footrest of your chair. I am in awe of your intelligence and imagination. I love watching you play elaborate games with your dolls as you create different experiences for them. I can sit and listen to your stories for hours. I marvel at the various masterpieces you create for me, each one an incredible work of art.

I drive you to and from your school while Jacob is bussed to and from his. I bathe you and help put on your pajamas. I tuck you into bed at night and comfort you when you wake with a nightmare. A caregiver bathes your brother because he is too heavy for me to carry. I am terrified that I might drop his wet and slippery body during the short transfer from his special shower chair to his changing table.

The same caregiver puts Jacob to sleep while I’m with you, listening to stories about your day. I crawl into bed with Jake for a few minutes of cuddling before he falls asleep. And it’s the nurse in his room who administers his medication and helps ease him back to sleep in the middle of the night when he wakes up with a fever.

But, when I put you into bed this evening, your question sliced through me like a jagged edge of broken glass: Why do you love Jacob more than us? 

The answer, quite simply, is that I don’t love him more than you. And I don’t love you more than him. I love all of you the same. I just have to show it differently.

All my love,

Mommy

Marcy is speaking about her book at a Toronto event run by Three to Be's Parent Advocacy Link on May 28 from 7 to 9 p.m. at 452 Wilson Ave. RSVP to brenda@threetobe.org


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Chronic pain on campus: 'It's a silent, daily battle'

By Louise Kinross

Judy Sookehan Woo is a part-time student studying sociology, linguistics and women’s studies at a university in Western Canada. Judy has fibromyalgia and chronic fatigue. Fibromyalgia causes constant musculoskeletal pain and problems with sleep, fatigue, memory and mood. “If someone comes up and gives me a hug, it hurts,” Judy says. “Every day is unpredictable.” Chronic fatigue is a condition where the person feels exhausted no matter how well rested. “My illnesses are invisible and it’s a silent, daily battle,” Judy says. As a woman of colour with invisible disabilities, Judy has experienced what she describes as ableism and racism on campus. Follow her @Woo_Judy on Twitter.

BLOOM: What’s the biggest challenge you’ve faced with an invisible disability?

Judy Sookehan Woo: Negative reactions from professors who assume I’m healthy and able-bodied and treat me like I’m cheating because one of my accommodations is extensions on when papers are due. One professor, when students were in the room, told me she had ‘looked up and down’ the school policies and there was no mention of extensions.

This is a documented accommodation for me that is sent in a letter to the teacher by the Disability Resource Centre through interoffice mail. Usually, during the first week of class, everything's fine. Then, I can tell when the professor receives the letter about my accommodations because of the way they react to me.

It’s like they expect me to be the model minority student and they’re in a state of shock when I’m not, and then I’m treated awfully in class. They had it really rough when they went through their degrees and I appear okay so I shouldn’t use this letter as a way to manipulate the system. 

BLOOM: What did you do after that professor made that inaccurate remark?

Judy Sookehan Woo: I complained to the school’s Disability Resource Centre but they didn’t know what to do. There wasn’t a form for me to fill out or any kind of process to address this. There was no ‘I’m sorry this is happening to you.’ I asked if I should go to the Human Rights and Equity office and they dumped me over to that department. It was up to me to go to a different department I didn’t know to explore what I could do.

BLOOM: Have you found any administrator on campus helpful in resolving issues when your accommodations aren’t recognized?

Judy Sookehan Woo: Yes, the ombudsperson. There have been times when I e-mail a teacher to say I’m sick and I’ve missed a midterm and how can they accommodate me? And the professor doesn’t respond. Nothing. So going to the ombudsperson is the only thing I’ve found helpful. They’re neutral, but when they’re involved, professors are more likely to communicate.

BLOOM: Was there a group for students with disabilities on campus?

Judy Sookehan Woo: Yes, but it was an advocacy group that was more interested in politics than supporting people. It was like a popularity contest. They weren’t helpful when I came to them for advice and support.

BLOOM: Do most of the people in the group for students with disabilities have physical disabilities?

Judy Sookehan Woo: No, all of them had invisible disabilities. But except for two other women, they were all men and all white. I was the only person of colour who was transparent about my illness. It was very alienating.

BLOOM: Besides negative reactions about accommodations from professors, are there other challenges for you on campus?

Judy Sookehan Woo. Yes. There’s a lack of designated lockers for students with disabilities. I carry a big heavy knapsack and I try to find a locker assigned to people with disabilities that’s close to the class I have, but they’re scattered across the campus and the ones they have are usually already taken. There’s a similar problem in the main library where there are about 100 computers, but only one set up for people with disabilities that’s accessible. If I need it I have to kick that person off.

BLOOM: You mentioned there are designated rooms in the library with accessible computers. What are they like?

Judy Sookehan Woo: The computers in the designated rooms are very old compared to the computers available in the main library. They are constantly being fixed, so they’re not always there. There are two tiny rooms with four computers so it’s very cramped. There was never a working printer or access to the USB drive in the computer. If a person was in a wheelchair there’s no way to plug in their stick, unless they lift the equipment and plug it into an outlet in the wall.

BLOOM: What advice would you give a student with an invisible disability who’s just starting on campus?

Judy Sookehan Woo: Surround yourself with a supportive network of people and administrators.

BLOOM: How do students find supportive people? Like in your case, you didn’t find the group for students with disabilities helpful?

Judy Sookehan Woo: If you can find even a core of two to three people it’s important. When school policies change, a lot of the time students like us find out through word of mouth. I went to three clubs before finding a couple of people I consider friends. 

One of the clubs I went to was the students of colour collective. It took me a long time to find out who was a really good friend and who wasn’t. The people who work at the student loan department are very familiar with people with disabilities and grants and funding, and they can be a good source of support. They can help explain what the criteria is to get different kinds of funding.

BLOOM: What are other tips you’d give?

Judy Sookehan Woo: Have your accommodations written down for the professors. Do not compare yourself to other students and recognize how hard you have worked. 

It’s a full-time job to take care of yourself and keep up with classes. If you find yourself just coping, but not managing your illness, don’t be afraid to drop a course and regroup. To me, coping is like treading water and it’s not very healthy. You can end up burning out. 

Because school is stressful, be aware of your emotional and physical triggers. For example, I can’t drink coffee because it triggers my anxiety and school is already high anxiety as it is. Reward yourself every time you accomplish a goal. It’s not easy having a disability and going to school at the same time.

BLOOM: What would you like to do in the future?

Judy Sookehan Woo: I’d like to use new media to educate others as a woman of colour in the social sciences. Whether it’s Twitter, or filmmaking or using other social media, I’m interested in digital sociology.

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A children's rehab doc says goodbye at age 18

In children's rehab, unlike in acute-care, kids and families develop long-term relationships with clinicians. Dr. Golda Milo-Manson, a developmental pediatrician at Holland Bloorview, talks about what it's like to work with a child from the toddler years through age 18, and the emotions she experiences when she has to say goodbye. Thanks Golda!



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Parents at centre of online training to bring Zoey Faith home

By Louise Kinross

Home.

It’s Thunder Bay, and it’s where Amanda Mintenko has always wanted to care for her 15-month-old daughter Zoey Faith—along with brother Liam, 2, and Dad Mathew.

But Zoey Faith was born with spina bifida, paralysis of her vocal chords and apnea, so she requires a breathing tube attached to a surgical opening in her neck to keep her airway open. “When she gets anxious her vocal chords close, so she would suffocate,” Amanda explains.

“At first we were told Thunder Bay wouldn’t accept Zoey as a patient and we’d have to move to Toronto because our local hospital had never cared for a baby who used a ventilator. I said no and wrote advocacy letters to our MP, lawyers, the child advocate and did anything possible to ensure that we got the proper resources at home. I fought for this and I want to make other parents aware, so that another family like ours isn't told they have to move.” 

The transition home for Zoey Faith included a seven-month stay at SickKids and a four-month stay at Holland Bloorview, where videoconferencing was used to train nurses and respiratory therapists in Thunder Bay.

Using Ontario Telemedicine Network’s videoconferencing, Zoey Faith’s parents and the team at Holland Bloorview trained staff in Thunder Bay on the baby's tracheotomy care and how to provide her daily physiotherapy.

“Having the family show Zoey Faith's care right at the bedside helped the Thunder Bay team visualize what they would need to do,” says Maryanne Fellin, a clinical resource leader at Holland Bloorview. “It also allowed the Thunder Bay team to get to know the family, see how Zoey Faith would react in a real setting and then have a discussion during the videoconference.” 

Amanda says she and her husband Mathew learned how to care for their daughter's tracheotomy, ventilator and stomach-feeding tube quickly, “Because we were so determined to come home. I had a two-year-old at home with his grandmother and I hadn’t seen him for 11 months.”

Amanda says the best part of being at Holland Bloorview was a month of “care by parent” where Amanda and Mathew did all of Zoey Faith’s care on their own, only calling a nurse if there was a problem.

“It was fantastic. We knew what we had to do. We had our privacy and it was nice knowing there was someone there to assist when we needed help. At home, we do the work all day, so we have to be able to tell when anything is wrong.”

In addition to using videoconferencing to train health professionals in Thunder Bay, the technology allowed staff there to participate in monthly family team meetings at Holland Bloorview. “Thunder Bay had homework to do and attending the family team meetings meant we could assess how much progress they had made,” Amanda says.

Amanda and Mathew eventually went home first to get ready for Zoey. 

The one-year-old then flew to Thunder Bay with a Holland Bloorview nurse and respiratory therapist. “She loves to fly and it went very smoothly,” Amanda says. “I was comfortable knowing it was staff we knew who were coming with her. I felt she was safe with them.”

Amanda says she loves having her family together at home. “I’ve had a chance to start putting the kids into a routine and going for play dates and we also love having our privacy.”

Amanda says Zoey Faith is a happy, outgoing, playful baby who loves life. The family has seven hours of nursing-care every night so that the parents can sleep. The rest of the time Amanda is the primary caregiver. “I love it. She doesn’t require too much because she’s a very content, happy baby.”

Amanda says she was able to demonstrate Zoey Faith’s care hands-on to local staff in Thunder Bay when the family returned. But she likes knowing that Holland Bloorview is just a call away. “If I have a question I can’t answer I’ll call and speak to a respiratory therapist and they’ll share their insights.”

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'I loved my grief because that was my brother'

By Louise Kinross

Family Life by Akhil Sharma is a semi-autobiographical novel about a family’s journey to two new worlds.

In 1978 the Mishra family from Delhi, India moves to New York, a place that’s fairy-tale like to the Mishra boys with its hot-water taps, elevators and wall-to-wall carpeting.

Then, just as the older son, Birju, is accepted into a prestigious school, the family is upended by a catastrophic accident: Birju survives a near-drowning, leaving him with severe brain damage. He is unable to move, speak or see.

The story is told from the perspective of the younger brother, Ajay. While his mother becomes a round-the-clock caregiver who can’t give up the dream that Birju will "awaken," his father becomes an alcoholic.

Ajay stands alone in his grief and guilt, raging against this new world in which the brother he knew is gone. “Seventy per cent of it is true,” Akhil told me.

My interview with Akhil began with his responding to a question I asked about what kind of internal life his brother had after his injury.

Akhil Sharma: I was thinking about your question about how much sentience remained in my brother. He could laugh, and I’m not sure what he was responding to, whether it was our tone. My mother said he could hear us and she believed he could understand us.

I remember right after we brought him home I spent hours talking to him and trying to get him to laugh and climbing on his bed and making noises so he would grimace. I do have the sense that something was there. An earlier draft of the book had more of the brother laughing.

My experience was that there were two horrible things that occurred. I began to feel that I could get him to make little grimaces but I didn’t know what this meant. I was only 12. And I found it frustrating, not only because the response was so little, but because my mother was forcing an interpretation upon this which made me unhappy. She said [Birju] was still inside, he was still the same. This made me really angry.

The other thing going on was I felt I had to do everything. I felt I needed to sit with him for hours every day and all day. At some point I began to not do so and my mother would shout at me and tell me I was selfish and that gave me further incentive to not interpret his reactions as meaningful. For me, and the character, his grimacing didn’t signify much, because there was no emotional satisfaction for me.

BLOOM: Because the brother you knew was no longer there.

Akhil Sharma: Correct.

BLOOM: Why did you decide to write the book?

Akhil Sharma: I want it to be useful. I felt something really bad has happened, let me make something good out of it.

BLOOM: I think the book beautifully captures the love and resentment that exists between siblings. Before Birju’s accident you describe him as the person who’s most valued in your family.

Akhil Sharma: In the end what matters is not what the parents actually do, but how it’s experienced by the children. The child views the parents focus on the brother, whose studying to get into a special school, as sort of ‘Thank God they’re bothering him instead of me.’

BLOOM: Yes, but after the accident Birju becomes the focus because of his severe disabilities and you’re completely overlooked.

Akhil Sharma: They say the way deprivation works is you don’t know what it is. You don’t know what you’re missing. It’s like a vitamin deficiency. For me there are two things. It’s reasonable for parents to focus on the sick child. The character and I to some extent choose to make ourselves small. We realize that there’s this enormous need and we shouldn’t be in competition for resources. At some point Ajay begins to hold his breath and asks God to give the extra breath to his brother. The child chooses not to be a problem and chooses to win attention in other ways.

BLOOM: Initially you spend a lot of time praying with your mother and trying to behave.

Akhil Sharma: After the accident it was a hopeless situation, so you do the one thing you can do, which is pray.

BLOOM: But in one scene you’re bathing your brother and you begin to cry because you say ‘We’re not good enough people.’ This resonated for me because I’ve often found that my son’s disabilities seem to show up all of my inadequacies, all of the ways in which I wish I was a better person. At other times, if a negative thought about your brother enters your mind you immediately chastise yourself.

Akhil Sharma: That is exactly right. Another way you are constantly aware of your inadequacies is that there’s this enormous need and you can’t behave in a perfect way, so you’re constantly getting angry. You’re always aware of your inadequacies and also of not having enough money, enough resources, of not being smart enough. You’ve got an insurance form to fill out and why does it take three hours to fill out? All of these things make you aware of being a failure.

BLOOM: You talk about wanting others to see that Birju mattered. Why did you feel he had been stripped of his value?

Akhil Sharma: Because I didn’t understand what this thing meant. I felt that because this thing was so enormous for me, I wanted everyone to value it in the same way I did, and other people couldn’t. They couldn’t comprehend it. They didn’t know what it meant to spend all of our time in hospitals. I felt that since our world had ended, other people’s world should have ended also.

BLOOM: Did no teacher or health professional ever tell your parents that you, as the sibling, needed special support?

Akhil Sharma: No. We had none of that. I had an aunt who is a doctor who is an utterly useless woman. A colleague of hers said ‘Hey, this thing occurs to the entire family, and they should go to talk to a therapist about it.’ And my aunt said: ‘Oh, all you do in therapy is talk and in our families we talk all the time anyway.’

BLOOM: But that kind of conversation would have had to be facilitated by professionals.

Akhil Sharma: I remember how shocked I was when I read in Shakespeare where a king tells a mother ‘You grieve too much for your dead child’ and she says:

Grief fills the room up of my absent child,
Lies in his bed, walks up and down with me,
Puts on his pretty looks, repeats his words,
Remembers me of all his gracious parts,
Stuffs out his vacant garments with his form;
Then, have I reason to be fond of grief.
(Constance, in The Life and Death of King John)

I remember reading that and thinking holy shit: I loved my grief because that was my brother. If Shakespeare can do that to me, I hope when people read this book they feel that they’re not alone. When I was growing up it felt like I was the only one.

BLOOM: The feeling of shame comes up quite a bit in the book. At first you don’t tell kids in your school about your brother. Were there other students in your school with disabilities?

Akhil Sharma: There were not. The shame was vast and it was survivor’s guilt and it was attached to everything. It took on whatever form there was to take on. There was the shame of racism. That maybe I deserved to be shouted at or cursed at because I’m actually a bad person. Or the shame could be because I got good grades but really, I had to work like an animal, so basically I’m a loser because all I can do is work like a donkey.

BLOOM: One of the saddest parts of the book, I think, is when your dad gets treatment for alcoholism, and then starts telling people about it as a way of proactively helping himself stay dry. And instead of supporting him, the Indian community shuns him.

Akhil Sharma: Who would want their father to go around telling people ‘I’m an alcoholic?’ In middle class Indian culture it matters a lot how you appear to others and a lot of the status this family has was attached to it being considered holy. The father’s behaviour destroys all of that value.

BLOOM: The injustice of Birju’s accident, and how you come to see yourself as the lucky one in the family, leads to a lot of grief and guilt. There’s a line in there where you talk about how ‘Birju needed to be okay to be okay ourselves.’ I think that’s a common feeling for parents and siblings.

Akhil Sharma: For me there were two things going on with survivor’s guilt. There was survivor’s guilt relative to my brother. I remember walking around my school field and crying and having a conversation with God and in one conversation he asked if I would switch places with [Birju] and I said no. And I immediately thought I can’t be trusted. I’m selfish. It wasn’t that I survived, but that I would choose to survive over him.

And the other type of survivor’s guilt was with my parents. When [Birju] first came home from the nursing home there’s a scene where I leave my mother behind to go to school. And while it’s okay that I have a life different from my brother, it’s not okay having a life different from my mother. I didn’t want a life like that, that allowed me greater privilege than my mother.

BLOOM: You never got a chance to express your grief because your parents were so devastated. The one time you tell your dad how sad you are he shuts you down by saying he wished he could hang himself.

Akhil Sharma: The line, and I’m proud of this line is: ‘If you were half as sad as I am you would hang yourself every day.’ The father is tired, he’s unhappy, he’s hungover and he wants to push his son away. ‘You’re sad?’ is almost like a punch. And then he moves to ‘If you were half as sad’ because he doesn’t want the punch to land. He acts from anger and then he tries to correct it.

BLOOM: Your mom wants to ‘try everything’ to cure Birju, even when some of the treatments are wacky. This makes you feel lonely and disconnected from your mom.

Akhil Sharma: I viewed my mom as crazy. He was not going to get better, this is crazy. And some of this stuff costs thousands and thousands of dollars which we didn’t have.

BLOOM: I think it’s common for parents to go overboard with treatments even when there’s no evidence that they will be helpful.

Akhil Sharma: But the [healthy] child can see it. And the [healthy] child feels alienated.

BLOOM: If your parents had been more able to accept Birju’s accident, would that have made a difference for you?

Akhil Sharma: I think the sort of person who doesn’t go overboard would be a different person than my mother. Like someone who doesn’t go overboard might also not be the person who calls me selfish for not doing things for my brother. For my mother, it was ‘I will do anything and it doesn’t matter to me what I say or do to you because in the end my words won’t kill you. I’m willing to apply all the pressure in the world to get what I want.’

BLOOM: Every member of your family had an immense need for support and understanding and never got any of it.

Akhil Sharma: I’m sure professional help would have been very useful. But really, what would have been best was seeing other people in similar situations and not feeling so alone.

BLOOM: I couldn’t get over the scene in the book when you and your mom come into the nursing home and find Birju propped on his side and tears streaming down his face because he hadn’t been turned during the night. Did that make you feel that he had more of an internal life than you thought?

Akhil Sharma: Yes. But I didn’t know what that internal life meant. Even a dog can suffer. For me I was always comparing him to before the accident. The pre-accident brother was the real brother and he was always absent. What was left was a thing.

BLOOM: Your mom comes to the conclusion that to ensure Birju’s dignity you need to care for him at home. Was that the best solution for your whole family?

Akhil Sharma: When I was there and it was occurring, it was so horrible, the nursing home, that it seemed like ‘Let’s do this. Let’s bring him home.’ But in retrospect I think we should have left him in the nursing home and let him suffer and get sick and die. The best solution would have been a painless death. Bringing him home destroyed my family and me.

BLOOM: It seems that you were never given the opportunity to process your emotions in a way that would allow you to move forward, or to at least carry them in a different way.

Akhil Sharma: We don’t really move forward, we carry it with us, but viewing it in a different way, that seems to be a valid way of thinking about it. ‘Oh, that kind of thing happens to human beings. I’m a human being so why shouldn’t it happen to me?’ There are also wonderful things that have come out of this. It’s made me very attentive and loving.

BLOOM: What advice would you give parents in terms of how to treat siblings when a child is healthy but then has a catastrophic accident?

Akhil Sharma: I think one thing to keep in mind is that the healthy child will spend a lot of time trying to protect you, the parent, and that that is a bad thing. Our very best qualities end up damaging us. I would say be engaging with your child. Talk regularly about how whatever the child feels is okay. You have a right to love the sick child and you have a right to take care of him, but part of the healthy child's right is to receive his share of love and attention and we need to honour that.

BLOOM: Do you feel there are parallels between your immigrant experience and the experience of entering the world of severe disability?

Akhil Sharma: It’s a very strong parallel. It’s like a country of the sick vs the country of the well. When we left the nursing home we felt like we were escaping but we were not really escaping because we were going out into loneliness. At least at the nursing home there were other people who had similar experiences and understood what we were doing. But now we were all alone.

BLOOM: What did you learn about yourself while writing the book?

Akhil Sharma: I think I learned most of all I have to love my parents for who they are. And the other thing is I have to take care of myself and my first loyalty needs to be to my own happiness.

BLOOM: What do you hope people who haven’t experienced the world of severe disability take from the book?

Akhil Sharma: Until someone you love has a stroke, and suddenly you’re in that world. I think most people will experience something like this. I think what they gain from any fiction is that it takes away the loneliness and sheds light as to what you need. That this is okay. That you’re going to behave badly. That you’re going to have weird thoughts. That it’s going to be okay. 

Photo by Bill Miller

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'Disability was home:' From big sister to anthropologist

By Liz Lewis

There's an old adage among anthropologists that you have to spend time in another culture to truly understand your own.

As an undergraduate researcher in Ghana, I knew I'd encounter different practices and beliefs about disability, and see firsthand the struggles of people who lacked basic resources.

I remember vividly the first time I saw adults with physical disabilities crawling on sidewalks, flip-flop sandals positioned carefully on their hands and feet to protect them from the rough ground. I'd been told about this and even seen pictures, but the image still shocked me. 

It was my first experience of "coming home" to disability after growing up with a younger sister, Katie, who has multiple disabilities and is deafblind (see photo above). 

Three months into my study abroad program, I embarked on the independent research portion of the curriculum. My study could focus on virtually anything that appealed to me. Pushed by my parents and encouraged by a family friend who was an international disability expert, I had been careful to set everything up in advance for my short-term project on blindness and social stigma. Our friend’s stories of working on deafblindness issues in Asia and Africa dazzled me, and I was curious about following in her path, even for only a short period.

On the first day of my project, I hopped a taxi from my temporary home at a local hostel to the office of the Ghanaian Association of the Blind. It was rush hour and Accra’s streets were packed. People selling gum, cigarettes, and compact discs wove their way between stalled traffic at lights, along with children and adults begging for money. It was here that I first saw adults with physical disabilities crawling on the sidewalks.

I arrived at the Association of the Blind and tried to make my way through the complex in search of the appropriate office. As a 21-year-old white American woman, I stood out. People were curious. Two men in their 20s approached me. They were not verbal, so they began signing to me. Although I did not understand most of what they said, we all grinned widely as we tried to communicate across the layers of barriers. They led me around the facility to the office where I was to meet an internationally respected disability expert, and we said our goodbyes. I recall a feeling of utter naturalness and comfort. It hit me: I was in the right place, in every sense.

This was the first time I truly felt the universality of my position as a person who grew up in the disability community. Until then and, indeed, for many years after, my feelings about disability in my professional life were marked by ambivalence. While part of me perhaps always knew I would end up dedicating my career to disability issues, I was reticent – scared, even – about committing.  Was I really ready to welcome disability into my work life, since it would always be a fixture of my personal world? And, if I didn’t want to be a special education teacher or service provider, what could I possibly do?

I had been immersed in the disability world since the age of four, when my sister was born. Although we did not know it for many years, Katie had CHARGE syndrome, a rare genetic condition found in about one in 10,000 births. I grew up surrounded by children with disabilities and their families. I visited the local parent resource centre with my mom, helped my parents flip through binders of special-ed law during our struggles to obtain appropriate school services, and I accompanied my parents on countless visits to doctors, specialists, and therapists. As the older sibling, it was my job to help and I took pride in it. 

Still, as is typical, I became less involved as I got older. I was busy with high school stuff – classes, extracurriculars, and friends – and then I went away to university. My love for Katie was unwavering, yet I noticed a growing public-private divide in my relationship with disability. It had become something that was confined to my family life, but my academic and personal realms were increasingly separate. Or were they? Although I felt that way at the time, looking back I can see clearly that I flirted with disability issues as a vocation throughout college. I simply wasn’t ready to commit, nor did I know where I fit in.

During my semester in Ghana, I was shocked by the level of interest among my peers and professors regarding my research. As a sociology and anthropology major, I had no idea that disability was even a viable area of study. I didn't know of any scholars in traditional academic areas who focused on disability, nor had I read or even heard of any books or articles on the topic. While gender, sexuality, and race were fair game in terms of identity politics, disability somehow remained in the shadows. Even if I’d been ready to pursue an academic career researching disability, I did not yet know it was an option. I had no models.

In the years that followed, I largely forgot about disability outside of my family life. I worked abroad briefly after graduation and then returned to the U.S., where I embarked on the typical life of many 20-somethings. I lived in a large city filled with countless restaurants and bars, worked diverse jobs of various interest levels, hung out with my friends, and met the incredible man I would later marry. 

For the first time in my life, I eschewed all things serious. I didn’t even do volunteer work! And I was totally and utterly bored. Young and relatively mobile, I took my meagre savings and moved to South America in search of more. After a position as a preschool English teacher in Ecuador ended, I wandered down to Bolivia in search of volunteer work and adventure. I began helping out at a residential centre for children with disabilities – many of whom had been abandoned – and also orphans. When I first toured the facility, I once again encountered that unmistakable sense of knowing. Disability was home.

The experience opened my eyes in new ways to disability realities I had not encountered. I saw multiple children whose disabilities – physical and intellectual – were inseparable from abuse in their former homes. Most of the kids never learned basic living skills, much less anything academic. Well-meaning and overworked staff, many of whom were just teenagers themselves, tied children to wheelchairs to keep them in place. 

I will never forget the day that my now husband, who was with me, realized that his favourite student could walk with assistance and did not need to stay in her wheelchair. Little Magdalena, who was known for giving wet, sloppy kisses on the cheek, spent her mornings over the weeks that followed dancing with my husband. She loved him. We marveled at her secret abilities and wondered what else she might have been able to do with adaptive technologies, educational funding, and family and community support.

I came back to the U.S. with a new sense of direction. I began an interdisciplinary Master’s degree program and promptly fell in love with a class on the anthropology of disability. I had not known the topic even existed! Finally, I was exposed to disability studies literature, as well as social science and humanities approaches to disability. I was hooked. I read everything I could find, wrote a thesis about parent advocacy efforts, and set out to find my dream job in disability. Unfortunately, it remained elusive and I wandered elsewhere, dedicating myself largely to issues of education, migration, and human rights. As always, I was drawn in by the individual faces and stories behind broader lived experiences, yet I had little interest in working my way up a nonprofit ladder. I wanted to stay in the thick of it, to immerse myself in life histories and absorb everything people would reveal. After years of fighting it, I gave in: it was time to get a PhD in cultural anthropology.

Five years later, I can finally say that my old ambivalence is gone. I have immersed myself in the formal study of disability and am pleasantly surprised by the support I have received from the academic community and beyond. I spend my days reading, writing, and talking about disability issues, and I am lucky to be involved with some fantastic local organizations. I have conducted research in Central America and the U.S., presented papers at multiple conferences, and I am in the process of writing a dissertation on family experiences with complex diagnoses. 

Every aspect of my work is informed by my own experiences as a sibling, and I am honored and humbled by families’ willingness to grant me a small window into their stories. I feel so lucky to be part of a nascent but growing group of social science and humanities scholars working in the area of disability. I am also steadfast in my commitment to generating scholarship that reaches beyond the walls of academia. I hope that my work will be read by families, organizations, professionals, and policy makers. As a sibling-researcher, these are not abstract aims. I literally think about them every morning as I sit down to write or each time I meet with other families. These goals animate every step I take.

I still do not know how I fit into the dominant perceptions of what it means to be a sibling of someone with disabilities. My parents were warned when Katie and I were young that I would likely be jealous or resentful of her, since she would receive so much attention because of her disabilities. This always struck me as ridiculous, even as a child. Did experts really think that I was selfish enough to resent my parents’ attempts to find new therapies or educational techniques? 

Another concern was that I might develop so-called problem behaviours and act out in response to our family’s struggles. In reality, I never felt like that was an option. My family had our hands full and simply didn’t have room for me to do poorly in school or get into trouble. As an adult, I am not convinced that this pressure was a bad thing. Did I miss out by pushing myself to make good grades and not get caught up in boys, partying, or risky behaviours as a teenager? 

The discourse on siblings still hinges on a curious paradox: whether we are too good or too bad, we will still be pathologized. Our behaviours are all too often explained in terms of our sibling status. This is an extremely problematic gap in understandings of who we really are as a diverse group of individuals with different goals, anxieties, and hopes, who happen to be unified by our sibling status. Can I explain many aspects of my personality in terms of my experiences with Katie? Yes, but that doesn’t make those explanations correct, nor does it reveal anything about how I might have turned out in a different family context.

Even today, I struggle to express my childhood feelings about Katie’s disabilities for one simple reason: Katie was normal to me. I knew nothing else and, even in the earliest weeks of Katie’s life, when we did not know if she would survive nor did we understand the complexity of her intellectual and sensory disabilities, I was fiercely proud of her. She was my sister. She was the only sister I had, the only sibling relationship I would ever know. 

As I prepared to enter high school, my family became involved in a heated dispute over Katie’s educational rights. I do not recall speaking to any of my friends about it until my final year of school, but that silence was part of a broader social protocol. My peers and I restricted our conversations largely to things like boys, clothes, and gossip. I later learned that some of my friends had faced serious family struggles during that time – addiction, mental illness, infidelity, violence – yet we didn’t discuss these experiences until much later. Perhaps disability had less to do with my silence than I used to think.

Even at the peak of my family’s legal battle to meet Katie’s educational needs, the only profound feelings of sadness and anger I had were directed toward the failure of the institutions we relied upon to meet our needs, not Katie. The key is that these needs were all of ours. I learned early that the perfect families depicted on television are nothing but fiction, and in reality we all have our struggles. I realized, too, that we live in a world in which people are literally cast aside. This was probably the hardest thing to process as a teenager, and I recall a palpable sense of grief for the naïve optimism I saw in many of my peers. 

Still, the biggest emotional struggle for me as a teenager was my lack of a network of other siblings to relate to. Not only did I have no one to talk to who could truly relate to my experiences, but I had no models. This was before the days of Facebook and disability listserves, and I would not learn of sibshops until years later. The only sibling support groups in our area were for brothers and sisters of kids with autism, so that didn’t work. Without anyone to follow, I simply did the best that I could. I winged it. Once I began college, I made an explicit effort to open up about my experiences with Katie from the start. I learned very quickly that people were genuinely interested in hearing our story, and my previous silence was broken.

Looking back at my circuitous path, I should have known that I was a researcher at heart. My passions are meeting families, hearing stories, writing what I see, and sharing these powerful disability realities with people who might not encounter them otherwise. My aim is, and perhaps has always been, to get the word out. I want to learn, witness, and disseminate. 

I want to be part of a small, but growing, effort to push disability from society’s margins and into mainstream discussions. I want to do everything I can to make sure that other siblings do not feel as isolated or singular as I did when I was younger, and to encourage scholars and journalists to take disability seriously – not as an object of pity or a source of stigma, but as a very real aspect of the human experience that will touch each of us in some way. 

I want to tell Katie’s story, to use my own family’s experiences and those of others like us, to effect change and make people listen. It took me until now, as a married mother in my 30s, to really embrace this as my professional destiny, but I think I can finally say that my old ambivalence is gone. Let’s do this.

Please follow Liz on her fascinating blog Disability Fieldnotes or on Twitter @LizLewisAnthro.

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What does IQ have to do with happiness?

By Louise Kinross 

I’m a little stumped.

I read this piece called Genetic screening to enhance IQ should be embraced in The Conversation. In it, an ethicist argues we should test embryos for gene changes associated with low intelligence (70-85) and discard them because of “the bad things” low IQ portends: poor job opportunities, low income, increased risk of poverty and welfare dependency, greater likelihood to drop out of school and increased chance of incarceration and being murdered (quite a mouthful).

This 2013 Psychological Medicine study seems to support the association between low intelligence and less happiness. Of almost 7,000 people, those in the lowest IQ range (70-99) reported the lowest levels of happiness compared with those in the highest IQ group (120-129). When asked to rate their level of happiness, 12 per cent in the lowest group said “not too happy” (that doesn’t strike me as a huge number. I don’t have the full study to look at what portion of the high IQ group said they were “not too happy.”)

However, the study authors suggest that it's not the degree of intelligence per se that leads to happiness, but the fact that people with higher IQs have better incomes and health and less mental illness.

But isn't stigma one of the main reasons that marginalized groups make less money, have poorer health and experience more anxiety and depression (I'm thinking historically of women, minorities and people with a range of disabilities)? What role does discrimination have to play in these outcomes?

Remember the 2012 French study that showed that even adults who outwardly say they accept kids with disabilities carry a negative bias against children with Down syndrome at an automatic, unconscious level (deduced through implicit-association testing)? In other words, they react to people with Down syndrome based on a negative stereotype they may not even know they have. “These implicit associations are the result of social values...carried by our culture,” says the lead researcher Claire Enea-Drapeau, a school psychologist in Marseille, France. “They are likely deeply embedded and difficult to break.”

However, in spite of the pervasiveness of automatic bias against kids with Down syndrome, this 2011 American Journal of Medical Genetics study found that nearly 99 per cent of 300 people aged 12 and over with Down syndrome say they are happy with their lives; 97 per cent like who they are; and 96 per cent like how they look. 

How does this finding fit with the Psychological Medicine research above?

Further, would we ever expect people in the general population to say they were almost 100 per cent happy and okay with themselves? The AJMG study seems to fly in the face of this statement from our ethicist above: “It is pretty clear that low-normal levels of cognitive function tend to reduce well-being.”

Then I googled IQ and depression and found this article about how the rate of suicide in undergrads at Harvard over a recent five-year period was two times the national average for college students. Wouldn't Harvard students be among some of the brightest? And, according to the earlier research, happiest?

I remembered this BLOOM interview we did with Holland Bloorview neurologist and autism expert Evdokia Anagnostou about how high IQ doesn’t predict happiness in people with autism. In fact, there's a high rate of anxiety and depression in youth and young adults with higher-functioning autism.

I felt like I was being buffeted back and forth between arguments suggesting that happiness was dependent on high intelligence and those suggesting it was independent of it.

And I started to think about how perhaps we were looking at this in a simplistic way. I was reminded of Harvard psychologist Daniel Gilbert’s Stumbling on Happiness—a book that looked at common blind spots in how we imagine the future. These include a lack of empathy that allows us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience.

Gilbert said this helps explain a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why most people assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite (in fact, sometimes they rate their quality of life as better post injury).
I wondered how much resilience on the part of children with low intelligence and their families might ameliorate some of the supposed negative impacts.

During this time I read A Healing Family, a memoir by Japanese Nobel Prize winner Kenzaburo Oe, about raising a son who was born with brain damage. In it, Oe keeps coming back to the fact that despite the challenges, having a son with intellectual disability came to define his worldview and enabled his family to adapt in ways that readied them for other challenges.

“Twenty-five years ago, my first son [Hikari] was born with brain damage. This was a blow, to say the least; and yet, as a writer, I must acknowledge the fact that the central theme of my work, throughout much of my career, has been the way my family has managed to live with this handicapped child. Indeed, I would have to admit that the very ideas that I hold about this society and the world at large—my thoughts, even, about whatever there might be that transcends our limited reality—are based on and learned through living with him.”

And further on: “On a more personal level, I can imagine a very concrete example of what happens to a society that shuts out its disabled by asking myself how we ourselves—[the Oe family]—would have turned out if we hadn’t made Hikari an indispensable part of our family. I imagine a cheerless house where cold drafts blow through the gaps left by his absence; and, after his exclusion, a family whose bonds grow weaker and weaker. In our case, I know it was only by virtue of having included Hikari in the family that we actually managed to weather our various crises, such as my mother-in-law’s gradual mental decline.”

I guess I'm not sure what I think anymore.

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