In Canada, disability researcher says 'racism is very polite'

By Louise Kinross

Sadora Asafaw has worked as a special-needs coordinator in Holland Bloorview's Spiral Garden and as a recreation assistant running programs for the hospital's inpatients. She recently defended her master’s thesis in Environmental Studies at York University: Amplifying the Experiences of Black Youth with Developmental Disabilities and Their Families: At the Margins of Policy and Practice. Sadora did in-person interviews with eight members of four families. The youth with intellectual disability had autism or, in one case, a rare genetic condition. “Racism, socioeconomic status, ableism and gendered inequities produce institutional and systemic barriers that affect the care pathways of black youth and their families,” she writes in the conclusion of her study. We spoke about it.

BLOOM: What was the goal of your study?

Sadora Asafaw: To really hear the experiences of black youth with developmental disabilities and their families. In my research, when working at Holland Bloorview, and in looking at other community organizations, there is very little documented about the experiences of these families.

BLOOM: What do we need to know about the results?

Sadora Asafaw: How intersectional, or interconnected, some of their challenges are. So, for example, financial strain for families of children with disabilities isn’t a surprise. But in my research I learned that black people in Canada earn 75.6 cents on the dollar that non-racialized Canadians earn. I expected the financial strain of disability, but we rarely consider how these families have higher rates of poverty based on racism.

BLOOM: So it’s a double financial whammy.

Sadora Asafaw: For any family raising a child with disabilities, if you have money, you can try to offset some of those challenges. Money helps in your ability to cope with challenges and ease the strain. These families are marginalized by poverty based on racism, in addition to the extra costs of raising a child with disabilities. But I wasn’t able to find anything that looked at both in Canada—that disaggregated families with children with disabilities based on race. Organizations have just started to collect data like that to take a health equity approach.

BLOOM: Another finding was that most services for these families are located in higher-income areas, so not in the families’ own communities.

Sadora Asafaw: That is absolutely true. The families have to travel great distances, and it’s hard if they don’t drive. But another issue related to where the services are located is how these families manage challenging behaviours in their children as they get older and bigger. Almost all of the families told me they had been pushed out of a program in a higher-income neighbourhood, or were no longer welcome, because of their child’s behaviour when they became teens.

When their kids were a lot younger, they looked cute and organizations could accommodate them and their meltdowns. But as they got older, staff reacted with fear to meltdowns. When the youth grew to be six feet tall and black, they felt threatened by his behaviour. Some black families also felt that the policies of the organization were applied more harshly to them, and that staff responses were shaped by racist stereotypes of black males as threatening.

There was also a sense—in programs or at school or even in hospitals—that when a black parent was advocating on their son or daughter’s behalf, staff would tend to doubt or question whether the youth’s behaviour was part of their disability or they were acting out.

BLOOM: I know you also found families felt that their youth with developmental disability didn’t receive the best health care.

Sadora Asafaw: Yes. They explained how their child’s disability resulted in them not getting preventative care, where doctors would help identify potential areas of concern that needed to be worked on, as opposed to acute care. This fit with my research, where I learned that families of youth with disabilities—especially intellectual disabilities—are less likely to get preventative healthcare and health promotion.

BLOOM: There was an interesting quote in your study from a sibling who said her brother was very overweight and developed other symptoms and when the family pressed for answers, they were told he had probably had diabetes for some time and was in crisis.

Sadora Asafaw: When you add race and low income to the mix, preventative care is less likely to happen. If that family were high income and living in a community where they get preventative care, can afford many activities and are more aware of what to look for, it would probably be caught earlier on.

BLOOM: So there often isn’t proper monitoring of these youth for secondary health problems?

Sadora Asafaw: It’s not just monitoring. If a family is told they have to change their eating habits, and they’re living on a low income, what if they can’t afford fruits and vegetables? Or what if the youth throws away food because of texture, but the family can’t afford to pay a behaviour therapist for help, and there’s no community health centre to support the family’s needs? Health promotion may also look different for these families, or require more steps.

BLOOM: I know you talked about the cost and location of programs that were barriers.

Sadora Asafaw: I saw two things. Sometimes there’s an information dump about available services that leaves families feeling overwhelmed. They don’t know what to seek out, or how it may apply to their child.

On the other hand, sometimes workers recommend things that are so incredibly far from where the families live. If you’re working two to three jobs, and the program is on the other side of the city, and you have no transportation, how will you get there? Or families may not know that to get a spot in the summer, they have to register in the winter, so when they call, the program is full.

Enhanced care coordination alone is not going to address the challenges black families experience. We have to understand how intersectional these barriers are: the financial strain, and how that determines where you live, and where you live positions whether you can attend certain programs, and whether you can attend quality programs. We have to understand how a child’s challenging behaviour, and how it may be perceived as a threat, contributes to that family’s experience of isolation and lack of support. We’re talking about racism. And if we’re not confronting that in our policies and programs and practices, these systemic and institutional injustices will persist.

BLOOM: So you’re talking about how these families are marginalized in multiple ways, and how different kinds of discrimination stack up.

Sadora Asafaw: Yes. And if clinicians don’t hear about this from families, it may be because English is a second language for parents. Or maybe they’re from Canada and they’re afraid of encounters with doctors or teachers or other persons of authority. They don’t feel safe to voice their concerns through traditional reporting methods. They know that part of an organization’s protocol for their child’s escalating behaviour is to call the police. Writing a complaint doesn’t work for these families because it leaves them feeling more vulnerable to being penalized.

BLOOM: Something that really stood out for me in your study was when a mother talked about how she’d rather her son beat her up than call 911 for help, because police would treat him like a criminal. “They would handcuff my boy…make him freak out all the more and then because they’re going to go and take the situation out of my hands, because they’re probably gonna [say] ‘Well, you called us!...’ He doesn’t have language to speak and unless I know what cop is coming to my door…Nope! Not gonna go there.”

Sadora Asafaw: I hear about situations like that a lot. CBC just released a report that looked at deadly encounters and how black people are more likely than any other racial group to be a victim. But no one has dug deep to look at how this informs these families’ care pathways. You see how black, indigenous and other people of colour continue to be left out. We have to address all kinds of marginalization for these families when developing and promoting programs.

The South Asian Autism Awareness Centre has done some incredible and important work, but they’re doing it with very little funding and great demands. Families go there because they trust them and they’re able to meet people in their community.

BLOOM: So you’re talking about targeting care to different communities?

Sadora Asafaw: First we need to hear from those communities and understand what’s not working. Maybe we can work with local organizations that are culturally based. Sometimes faith plays a big role, so perhaps working with local churches or mosques or other sources of support. If service providers aren’t hearing from black families and aren’t seeing them in their programs and services, you have to ask why? What is a barrier? What leads these families not to feel comfortable?

We need to do more outreach to families that aren’t engaged. You know that saying in the disability community ‘Nothing about us without us?’ It applies to black folks and other indigenous populations. It’s not that we don’t know what to do. It’s that we’re not given the financial resources to develop the programs and the physical space to do it in.

People think that culture isolates everyone, and is why organizations can’t reach certain populations. But too often that’s used as a scapegoat to explain why families of diverse backgrounds are not coming to a program.

Families tell me they know right away when they walk into a place when they don’t feel welcome. In Canada, racism is very polite. You can go to a program and still feel pushed out through the words they’re using, or the way they selectively decide to apply policy, or in realizing that you don’t have the right words to apply for a service. How many people in the program look like your family? How many decision-makers look like your family?

How many black families begin a program and then don’t go back? It’s not just important how someone enters a program, but how they exit. Part of it may be that they’re protecting their own safety. When you don’t do something in the manner that the person in authority likes, you’re afraid about how they may respond. Maybe they will call children’s aid. Black families are far more likely to have their children removed by CAS than other racial groups.

It’s the same thing with the mother who didn’t want to call police when her child has a violent meltdown. She’d rather the child take it out on her, because she knows existing options won’t help her family.

BLOOM: What did families tell you things would look like in their ideal world?

Sadora Asafaw: One would be having a specialized centre or hub that is working to support specific ethnoracial groups with the needs and struggles they have. It would build community capacity of black and other racialized families, so they can gather community input along with the best evidence to inform their programs. It’s not that everyone there has to be black, but you would hope to see more people who look like you and are working towards the same goal.

When parents talk about support groups, they say they couldn’t relate to what was talked about in traditional groups, because their parenting challenges were different based on their ethnoracial background. I don’t know of any place in Toronto that looks at the specific needs of black families with youth with developmental disabilities.

The reason I focused on black families was that they experience some of the most difficult challenges, and are often afraid for their survival. They’re afraid they might not survive certain encounters when it comes to their safety. What would an organization look like where they could aspire to more, and feel they can participate and really belong?

BLOOM: I know we’ve begun to collect health equity data from families.

Sadora Asafaw: If someone calls a code white [for potential violence], is data collected on that? That might show biases within staff, or a way to better manage situations in future. Look at where certain groups are being served in the organization. Some families come directly from SickKids for rehab. But what about community programs?

Maybe the reason a community program is not diverse is because it’s not easy to get to. Holland Bloorview is in a high-income area where homes go for millions of dollars. Perhaps many of the people attending a program live in close proximity to Bloorview.

Look at the duration that families stay with a program. If families don’t feel comfortable, they won’t stay. What about families who are discharged from a program because the organization felt it couldn’t support them? Are there higher rates of black families discharged from programs, because too many codes were being called for their child?

The other thing I didn’t spend too much time on, but that some of the families touched on, was to recognize some of the similarities between black families and black workers in healthcare.

Black staff in this sector tend to be personal support workers or nursing staff. They’re frontline, not in managerial positions. They’re often in contract positions, so their roles are somewhat precarious. It may be very difficult for them to share their experiences of racism, given the politeness that accompanies it in Canada. If they’re constantly advocating for families who have experienced something they perceive to be different or unfair, they may be viewed as a troublemaker.

If you have less developmental pediatricians that are black, less occupational therapists that are black, less scientists that are black, you have less black people for staff to look to for mentorship and leadership. It’s great that there are a lot of black workers in frontline health positions. But you need to see them in management and leadership positions. Otherwise it can make it very difficult for black workers to voice their concerns or opinions or perspectives. 

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Doctor says we need to give parents space to go 'off script'

By Louise Kinross

A year ago, Dr. Mohammad Zubairi was hired as a developmental pediatrician at Holland Bloorview after completing his fellowship training here. Most days now he’s doing assessments with young children and sharing the diagnosis of autism with their parents. Mohammad’s family has roots in Pakistan, where his grandfather was a doctor who dedicated one day a week to seeing poor patients at subsidized rates. Mohammad grew up in Canada and Saudia Arabia, where his mother was a doctor. He’s interested in how developmental pediatricians work with families who have “values, beliefs and thought patterns different than our own.” He aims to understand families from a big picture perspective that goes beyond the medical.

BLOOM: Why did you want to work with kids?

Mohammad Zubairi: It’s an opportunity to be silly. I grew up in a household with a sibling who was 10 years younger than me, so I was used to that dynamic. Children are always surprising you, and because they surprise they open up doors where you can learn about them. That excites me. The other thing that struck me as a medical student was that kids have a certain resilience we don’t often appreciate in other patient groups.

BLOOM: How did you get into developmental pediatrics?

Mohammad Zubairi: When I was going through pediatrics training at McMaster University I was paired with a mentor who was a developmental pediatrician. There was something about working collaboratively with a number of different health professionals in this field that really intrigued me. I had always been interested in psychology and brain development and when I came to pediatrics I was looking for a field that would allow me to bridge those interests. Developmental pediatrics struck a balance between doing medical assessments and incorporating a fair bit of thinking broadly about how we develop and interact with the world around us.

BLOOM: What do you like about your work with children and families?

Mohammad Zubairi: I’m aware, from speaking to families, that it’s a very fragmented system outside. What I try to do is equip families with resources or tools or strategies to help navigate that real world. Empowering families in that way is where my satisfaction comes from.

BLOOM: What might be in the tool kit you give families?

Mohammad Zubairi: I tailor a number of resources that I pick and choose for each family. It could be something as simple as a particular website that highlights information and strategies that families and schools can use to help children with attention difficulties. I don’t want to overwhelm families, so I wait until I see them three to six months later to add in additional resources.

BLOOM: What are the challenges of your work?

Mohammad Zubairi: The conversations we have are difficult, partly because of the nature of developmental pediatrics. Although we’re trying to standardize the tools we use, there’s still a subjective nature to it. It’s not like ‘Look here, you’ve got a rash, what can we do about it?’ Often the things we’re dealing with are hidden: we’re trying to uncover challenges that may not be immediately apparent to families or other care providers. We run into scenarios where we have to help families cope in the moment with hearing news that they may not have expected, or that they may not know how to deal with. As a clinician, you may have had a difficult conversation with the first family you saw, but you have to go in to see the next family with a clear mind.

BLOOM: How many families would you see on the days you’re doing assessments?

Mohammad Zubairi: I’m in clinic three and a half days a week, and I’d see four to six families a day, some of them new, and some for follow-up. It can be challenging to shift gears from one family to the next.

BLOOM: What’s it like to work in this field emotionally?

Mohammad Zubairi: We want to always prioritize being there for the family, so we don't always express our own emotions in the clinical encounters. That can take a toll later on.

BLOOM: What specific emotions might you feel?

Mohammad Zubairi: Sometimes there’s a feeling of anxiety, of what is this going to mean for the family and how will they respond to this information? There may be a sense of guilt about whether we’ve spent enough time getting to know that family’s story. Sometimes we prioritize the medical piece at the expense of thinking of the bigger picture. What really matters to me is the bigger picture, partly because there aren’t quick fixes or cures in the traditional sense, and being able to convey that to families requires an understanding of the family that goes beyond the diagnosis. You want to be able to convey information in a way that will be meaningful and useful to that family and meet them where they are.

BLOOM: But don’t you ever feel guilty because you’re conveying upsetting news?

Mohammad Zubairi: Yes, I would say that historically I had to deal with feelings of guilt in conveying difficult news. But this guilt has transformed into thinking about how to best empower families to navigate systems when their child may have developmental difficulties—whether that’s in the form of writing a letter of support, speaking to another professional, or helping the family connect with culturally-appropriate resources.

BLOOM: It must be very challenging for clinicians because what one parent finds helpful in terms of how a doctor shares a diagnosis another parent may find hurtful. People can interpret things very differently, and you don’t know how they’re going to respond going in.

Mohammad Zubairi: Every family, up until they get to Bloorview, has had a story and experiences that have informed them and then we, as clinicians, may allow for some things to be said, or not said, based on the messaging we give. So, for example, we give the message that there’s easy access to interpreters if language is a barrier. But is that enough? What if there’s something beyond the language piece—something that we don’t understand in terms of culture, value systems or beliefs? Sometimes we pay attention to the medical piece, but time doesn’t really permit us to get into these other discussions.

BLOOM: Why did you decide to become a doctor?

Mohammad Zubairi: I had learned that doctors were essentially teachers. In Latin, the word doctor comes from the concept of a teacher. I was always interested in education and I knew I wanted to do some teaching that was not necessarily to students, but in work with families. I have a number of physicians in my family.

My grandfather, when he was a physician decades ago in Pakistan, did what would be considered social medicine—thinking beyond the medical piece to the psychosocial variables that affect a child’s development, health and wellbeing. There are pictures of long line ups of people waiting to see him on the day he dedicated each week to folks who wouldn’t otherwise have access to healthcare. Instead of just seeing the wealthy who could afford regular rates, he chose to offer subsidized rates. My mother is a physician also, and practised in the Middle East. I spent my first six years in Canada and then eight or nine years in Saudi Arabia before moving back to Canada in Grade 10.

BLOOM: How does your experience in different countries influence your practice?

Mohammad Zubairi: The fact that my family’s roots are in Pakistan, and that I’ve spent time between Canada and the Middle East and interacted with people with all sorts of experiences, has shaped me and my ability to engage with families. Here at Holland Bloorview I’ve got the lovely ladies at Tim Horton’s teaching me a few words in Tagalog, from the Philippines. I might use a few words as an ice breaker with a family, to help them feel comfortable. I’ve developed an appreciation for diverse experiences.

BLOOM: I understand you and Dr. Anne Kawamura have been incorporating storytelling into your clinical work.

Mohammad Zubairi: The idea is that we go into an encounter with a certain approach and families come with their own thinking and beliefs and values and information that they want to share. Sometimes the two allign and sometimes they don’t. We’re not talking about asking directly ‘What is your story?’ but thinking about how we respond as clinicians when there are shifts in the narrative away from the medical piece.

So if a family shares information about something stressful that is going on in their life, do we acknowledge and respond to it? Or do we give it some lip service and then put the blinders back on? Medicine has evolved to be algorithmic. There are criteria you need to identify and parameters you need to look for. That means you may not pay attention to other pieces of information the family shares. It’s one thing coming to a diagnosis and it’s another coming to a diagnosis with an understanding of the family. And sometimes they can be at odds with one another. That is where I think understanding can come through storytelling. I haven’t used it a lot in my clinical practice but I’d like to. I think storytelling can be a gateway to better understanding families.

BLOOM: Can you give an example of something a doctor might miss because they’re over-focused on the medical picture?

Mohammad Zubairi: I remember with a recent family I had a trainee spend a whole hour gathering data about a young child with very complex medical needs. At the end, we began discussing the idea of cerebral palsy—and very quickly the mom started sharing things about her belief system and the role religion played in her life and her understanding of her child and the child’s progress. I was surprised, and so was the trainee, that none of this had come out because we were so focused on trying to understand the child medically. I’m interested in the culture of how we encourage, or don’t encourage, families to share that type of information. By hearing family stories we can situate a diagnosis within the big picture of the family and also identify what is important to them over time.

BLOOM: Do you do anything to help you cope with challenging emotions?

Mohammad Zubairi: When I was a trainee I used to go home to my wife and say ‘Oh my goodness, there was another parent who cried today.’ I associated a parent crying with something about the way I was sharing information—that I was somehow bringing those emotions out. Of course those emotions are natural reactions to hearing difficult news.

In between cases now I will go back to my office and take a couple of moments and deep breaths and try to finish up anything with the prior child before going on to the next child. I also do a bit of self cognitive therapy. I tell myself ‘I’m going in to see the next family to help them’ and it’s as simple as saying that. The new family might come in very stressed, and I may have been stressed due to the last scenario, but because we’re here to help, let’s take this mindset.

Outside of work I do a lot of hand drumming to destress—I used to play in a band back in the day. I also play sports—like squash or tennis when the weather isn’t as cold—and sometimes I read non-medical books.

BLOOM: Do doctors here ever talk about some of the difficult emotions they experience?

Mohammad Zubairi: There aren’t many spaces outside of the immediate clinical encounter. If I’m working with a speech pathologist or trainee I may bring out into the open the challenging nature of the case as that’s a good avenue to learn from it. As clinicians, we often struggle with similar types of issues or difficulties. At the same time, there can be an emotional drain that you take, so having the space to talk about that in broader clinician groups would be useful.

BLOOM: Can you tell us about your research?

Mohammad Zubairi: I have a masters in health professions education and I’m interested in reflective practice and the use of simulations. My current work is looking at how developmental pediatricians engage in cultural encounters—so how we engage with values, beliefs and thought patterns that are different than ours.

BLOOM: Why is that needed?

Mohammad Zubairi: Because we live in a multicultural context there are assumptions that we automatically take that into consideration when engaging with families. But we don’t have the data or evidence to show if we are truly addressing issues that relate to a patient’s culture. Every family unit has their own culture. Sometimes we fall back on thinking only about ethnic or religious culture. Cultural ways of thinking about disability have implications for our relationships with families and for how they use the recommendations we make. I’m doing qualitative research about how we can best train developmental pediatricians to engage in these encounters.

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Immigrant moms hit a service wall

York University researchers Nazilla Khanlou and Mahdieh Dastjerdi (above) share the findings of their study on the experiences of 30 immigrant moms in the Greater Toronto Area and their service providers. Rich findings about the barriers faced and how we can better support immigrant families were offered at this BLOOM speaker night.

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Let's find the missing 'family-centred' pieces

By Jacqui Getfield

Recently, I attended two events about family-centred care. I learned a lot but came away with conflicting emotions. I was intrigued and happy yet also very concerned. The conferences confirmed a suspicion that I’ve held since I first received my children’s diagnosis: professionals tend to ignore the influence of a family’s culture, structure and finances on its ability to care for a child with disabilities.

Most of the presenters seemed to avoid talking about the “social” or “cultural” factors that I believe must be taken into account with any “medical” or “clinical” considerations of the child and family. I kept wondering how is it that the “social” considerations were being ignored when the family is a clear social construction? This was very troubling, for me.

I’m the mother of twins who are challenged with what it means to live on the autism spectrum. I’m also an immigrant from Jamaica. Over the past three years, I’ve been puzzled by the expectations of some healthcare professionals.

When my boys were younger, therapists couldn’t understand why I wasn’t overly concerned about their social development.

I told them to consider a few things in my experience:

In my Jamaican culture, children, especially young boys, develop much later than girls. In Jamaica, it’s not uncommon for boys’ speech to be somewhat delayed until they’re four- to six-years old. And since my boys were born prematurely and are twins it makes the expectation for speech different from if they were singletons born full-term. Their ear, nose and throat (ENT) specialist, their pediatrician and other moms of multiples allayed any fears I may have had: they said delayed speech is not uncommon for multiples. And, everyone reminded me that each child develops at their own pace.

Further, I expected my children to pick up speech in our single-parent family with no older siblings more slowly than they might in a house with two or more adults plus older children. In the latter, it would be quite normal for toddlers to hear and organically absorb the spoken language that takes place almost constantly.

In my culture, Jamaican mothers do not carry on incessant, “irrelevant” chatter with children who themselves can’t speak. As for mothers conducting “pretend play” sessions and arranging play dates, that was unheard of—as though working mothers didn’t have enough to do!

Playing with other children is another area where immigrant families may have different expectations from the mainstream. While in both countries it is typical for young children to play with each other, in Jamaica there’s been comparatively less emphasis on pre-school or daycare and parents certainly don’t organize play dates. So there aren’t the same opportunities for socializing among children who aren’t related.

Young children in my culture play mostly with siblings or relatives or with their toys in their own homes. Older children may play with others in the neighbourhood in their own backyards, on the street or elsewhere. But for certain, these are not arranged play dates where parents are hovering in sight and earshot.

Parents in my culture may not notice a child is developmentally delayed until after they start school. It is during the early years of primary school—when children are between six and nine years old—that a parent first learns about their child’s disability from a teacher in Jamaica.

There has been very little emphasis on “learning through play” in Jamaican primary schools. Play is an informal activity between and among children. Adults are not expected to be integrally involved in unstructured free play—in or outside of school—which is the way things were in Canada just a couple of generations ago! Today in North America the mainstream parenting style has earned us the name “helicopter” parents since we feel compelled to hover.

When my children were not making eye contact at two years old, I simply didn’t think it was important. Personally, I didn’t become aware of the cultural importance of eye contact as a means of communication until I arrived in Canada.

Until recently, I have always thought this “eye contact” was an expectation among adults, only. Among immigrants, there are different cultural expectations regarding the observance of critical milestones such as eye contact. In Canada, in some immigrant households, making eye-to-eye contact is a social “no-no” especially for children. This may imply that you are being confrontational or not showing respect to someone in authority.

Over the past two years, since my sons’ diagnosis, I have come to understand fully that milestones are monitored extremely closely in Canada and if my children don’t meet these established milestones, they will be even less advantaged. So, these days I make the effort to determine the developmental milestones they must meet.

There are so many things that are different in Jamaica and Canada, even though they both share a common colonizing history. In my opinion, not only is it common sense for health professionals to be more mindful of the cultural realities of the families they see, but they need to consider the social and economic, as well.

Consider family A, headed by the low-income, less-advantaged mother who is an immigrant; who speaks English as a second language; who parents not one child with disability, but two; and who herself has a learning disability.

Now consider family B, headed by two non-disabled parents who are middle-class, non-immigrants, working professionals supported by a nanny and grandparents.

Shouldn’t family-centred care look remarkably different for each of these families?

Simple but important things can be barriers to family A. Things like transportation to therapy appointments; not being able to afford adapted equipment or to hire a babysitter; not being able to understand a hand-out about home therapy that’s written in English using clinical words; and not being confident enough to engage or communicate fully and openly with those in authority.

Similarly, some mothers may not offer their opinions regarding the care or treatment of their children without first consulting their husbands and older females for their input or “buy-in.” For example, in some cultures decisions regarding whether or not to diagnose and subsequently “label” a child, are life-changing decisions that are not to be made on the spot by a younger “less empowered” female.

Not only does Family A not have the financial and people resources that Family B has, but many immigrant parents are afraid to speak out. In some cultures it is certainly not acceptable to appear to oppose, criticize or speak out against those in authority. Most immigrant mothers from the developing world, regardless of culture, have not been taught how to advocate nor have they been taught that it is okay to advocate. They may fear that asking for services or changes in how services are delivered will negatively impact their child’s care because the authority figures may disagree and take it out on the children, passive-aggressively or overtly!

So in my opinion, for effective implementation of family-centred care, institutions must work closely with families and they must invite parents to share the cultural, social and economic realities of their everyday life. These realities must be part of the “family-centre care” conversation. They are just as important as the child’s medical diagnosis and treatment options because without an understanding of them you can’t have cooperation and true collaboration. These realities are critical to the success of any prescribed care and treatment.

When Jacqui Getfield is not engaged with her sons Jay and Em, she steals time away to provide corporate communications, writing and editing services through her company, Say It Write Communications. To contact Jacqui directly, e-mail jacqui@sayitwrite.ca

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Immigrant moms hit service wall

Immigrant mothers face a brick wall trying to get services for their children with disabilities in the Greater Toronto Area, says one mom of a child with autism who's also a social worker and University of Toronto professor.

“I’m supposed to know how to get through, and I don’t,” said Charmaine Williams at the Mothers Speak Up! Café Scientifique at Holland Bloorview yesterday.

The event brought together mothers and service providers to discuss the findings of a York University research study into barriers facing immigrant mothers of children with disabilities.

Despite her professional qualifications and the fact that she speaks English, Charmaine described the health, school and social supports for families like hers as “a bureaucratic obstacle course.”

The York University research on 30 immigrant mothers in the GTA and 27 service providers found a long list of barriers: fragmented services across the city that are hard to access and get to on public transit; long waits; language barriers; employers who don’t accommodate parents who need flexibility to meet the needs of their child; poverty; and discrimination by service providers, especially in schools.

“The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school,” said Sharon Smith, a mom with two children with special needs who immigrated from Trinidad.

Sharon said it was harder to get appropriate services for her son with significant medical and developmental disabilities than for her son who was highly verbal and only had social issues.

"It's not just my race,” Sharon said. “It’s also discrimination based on the degree of disability. My older son is quite verbal with social issues, but the school has been very supportive. But it’s very difficult and a constant struggle to get school supports for my younger son with seizures" and more significant language problems, she said.

“It seems that they make a judgment on what value people like my disabled child will be to society in the future” she said, and allocate resources accordingly.

Yana Skybin, a settlement counsellor with YMCA Newcomer Services in Simcoe County and mom of three children with autism said “just speaking with an accent” can lead to unequal treatment.

“[Service providers] ‘downtalk’ to women, even those who speak English,” Yana said. “If you don’t know how people communicate [in this culture], they assume you don’t have any education. When [mothers] don’t understand the system or speak with an accent, they treat them as if they have a disability. It is not an equal conversation.”

Yana noted that when she immigrated to Canada from the Ukraine she didn’t understand the “politics and interpersonal skills” needed to effectively advocate here. “At first I was too direct.”

Gail Jones, director of community support at Kerry’s Place Autism Services, said government-funded services “are not set up for people who don’t speak English or French.”

She also noted that cultural differences in how disability is understood can make it hard for families to get what they need. For example, she told the story of a family that didn’t follow through on behavior strategies they were given for their child.

After a number of staff attempted to work with the family, they decided to change course. Instead of focusing on behavioural intervention, they helped the family develop a network of support with their faith community.

“As the parents saw people from their faith community accept this child and the disability, only then could they accept it,” Gail said. “Other professionals might have wrongly labeled the family as non-compliant, instead of being flexible in their understanding and support approach.”

A mother noted that in the Asian community referring to your child as having special needs “is losing face. So parents will make excuses. My child is shy. She’s fine, she’s just afraid to talk to strangers.”

An advocacy group representing 70 Chinese families with children with disabilities said they were unable to get government funding because their parent support group is conducted in Mandarin.

Many mothers who suspected their child had a developmental issue were not believed, they said, by health and other service providers. Sometimes their parenting skills were faulted.

“It took two years to get a diagnosis,” Yana said. In the meantime, she was instructed to go to parenting courses, where she found that “90 per cent of the parents had children with special needs.”

Many of the mothers became single parents when their husbands left.

In recounting her despair at trying to cope with her childrens’ constant meltdowns and disbelief from service providers—including being told one child was simply “spoiled—” Yana recalled “hitting the bathtub with my hands until they hurt.”

Social isolation added to the stress. “People don’t know how to talk with me about being a mom of a child with a disability,” Charmaine said. “Other parents avoid [us] and [my child] becomes invisible.”

Sheila Jennings, the Mothers Speak Up! project coordinator and a lawyer doing graduate research on the rights of moms and their children with disabilities to support, noted that attendance at government-funded ESL programs for adults posed a barrier because of strict attendance policies. A participant explained that when moms had to miss class to attend to a child’s illness or serious meltdown “they were kicked out.”

Sheila said moms were heroic in the perseverance and creativity they brought to their advocacy despite numerous barriers.

Many were unable to fill out forms or advocate effectively at school meetings because they didn't speak English well enough, and many didn’t have Internet access.

Charmaine noted that “the world wants us to keep caregiving private because they don’t want to be accountable for it. Caregiving needs to be recognized as paid work. We need policy reform to support women engaged in caregiving.”

In pointing to services that make their lives easier, mothers said their best experiences happened when information and services were coordinated and available under the same roof.

The research is led by York University researcher Nazilla Khanlou. The Mothers Speak Up! event was sponsored by the Canadian Institutes of Health Research Institute of Gender and Health. A full report with references will be distributed this summer. To receive a copy, e-mail owhchair@yorku.ca with "Mothers Project Report" as the subject.

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How do culture and disability connect for you?

By Anchel Krishna

Like many others in the Toronto area, my parents are immigrants. They came to Canada in the 70s from India, their first date was at the CN Tower and after a few years of being married they started their family. My husband, Dilip (above with daughter Syona and I), is in the same boat.

Our marriage started with a pretty typical Indian wedding extravaganza (several days of celebrations filled with music, food, lots of colourful, traditional clothes and hundreds of our closest family and friends). And like many other newly-married couples we enjoyed a few years of dual-income, no-kids living before settling into suburban life and starting a family.

Almost two years ago our daughter, Syona, surprised us with a slightly early arrival. Shortly after she was born, we learned that there had been some unknown issues with the pregnancy that resulted in a specific type of brain damage that increased the risk of several conditions, including cerebral palsy, seizures and learning delays. As the year progressed and Syona continued to miss milestones, she was diagnosed with cerebral palsy.

The saying “it takes a village to raise a child” is definitely true in our case. Our house has a revolving door and the regular players include both our sets of parents, my sisters and their husbands, some cousins and Dilip’s brother and his family when they visit from Vancouver. Similar to many other cultures, this type of closeness is the norm for us. We have a built-in support system, Syona is surrounded by so much love and we have a half-dozen ready and willing babysitters on speed dial.

When Syona was diagnosed, there was one thing we knew for sure: we wanted to be as open as possible. As the Special Needs Parenting blogger for Today’s Parent I’m fortunate to have had that opportunity. And though I don’t delve into Syona’s MRI details with every person I meet, I don’t shy away from telling people about Syona’s diagnosis and how her abilities impact our lives.

There are a few strategies that might make talking about your child’s special needs easier:

• Get comfortable with the information you want to share. I used everyday situations to practise telling people about Syona’s condition, without sharing unnecessary details. My favourite place to practice? The casual conversations with other parents at our local park.

• Focus on your child’s abilities. I’ll usually start off by telling people about what Syona can’t physically do, but I spend the majority of a conversation sharing Syona’s likes, her progress and what she is able to do.

• Set and share your comfort zone. When Syona was diagnosed our family wanted to know if they could tell people. We encouraged them to share Syona’s diagnosis and also gave them some information about the condition so that they were informed and could answer some of the questions that came up.

• Model the behaviour. We tend to be annoyingly positive people most of the time (don’t get me wrong, we have bad days, but mostly, we’re a happy bunch). So many people have asked me how it is that we stay positive and the answer is simple: we truly enjoy our life. Syona is a funny, spirited and happy little girl (most of the time). There are a lot of small joys that we experience every day. We take time to laugh. So far, I don’t get a lot of pity or sympathy (and that makes me happy). I’d like to think it's because people see that we are happy with our life.

• Be respectful. Like I said before, Syona’s “village” is made up of lots of individuals that all have their own ways for accepting this unexpected turn of events. Some of them turn to religion and prayer for comfort, others look to us for guidance and many just accept things after seeing how happy Syona is. Let people get comfortable in their own way.

• Use community resources. Your child’s case manager or therapists might be able to provide insight. You may even have a community group or leader that advocates for special needs in your community.

• When people ask us questions, we treat them as opportunities to raise awareness and educate. I’ve found that questions usually are inspired by lack of knowledge (yes, even the offensive ones). Instead of getting offended, steer the question back to what is appropriate. And if you’re not comfortable answering a question or don’t know, just be honest.

Like any culture, there are varying levels of acceptance about special needs in the South Asian culture. Our family is a little more immersed in special needs advocacy than most. My husband’s aunt and uncle both have muscular dystrophy and run a school in India that integrates special needs kids with typically developing children. My mother-in-law is the founder of Handi-Care International, a charity to help raise funds for the school in India.

But not all our interactions have been sunshine and roses (both inside and outside our cultural community). There are people who look for those miraculous “cures” to what is “wrong” with my child and those who act as though our life is a tragedy or a curse.

Because of Syona’s diagnosis I’ve met several amazing friends (those who have kids with special needs and even many of her therapists). The truth is, I’d love to meet some South Asian parents that have children with special needs and start building a community network (Imagine a Bollywood dance class for kids of all abilities. How cute would that be?).

Since Syona’s diagnosis, both Dilip and I have become more optimistic than ever before. And many days, I look around and think that our life is perfect in its own imperfect way.

How has your cultural community reacted to your child’s special needs? Please share the ups and downs here in the comments! We'd like to include a piece on culture and disability in the next BLOOM magazine and would like to hear a variety of perspectives. How is disability viewed in your culture?

Anchel Krishna is a freelance journalist with experience in strategic communications who cares for her toddler while attempting to string together coherent sentences. She is also the special needs parenting blogger for Today’s Parent Magazine. You can connect with her on Twitter or email her at anchel.writer@gmail.com.

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Advocacy in an unfamiliar culture

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM clip.

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