Racism and ableism stack up against black moms, study finds

By Louise Kinross

Last month York University researcher Nazilla Khanlou presented results on a study of black mothers with children with developmental disabilities at the Racialized Maternal Health Conference in Toronto. Her team interviewed seven black mothers and three service providers to learn about the challenges the mothers faced and how these barriers influenced their own health. BLOOM did an interview, by e-mail, with Nazilla and two of her co-researchers—Luz Maria Vasquez and Attia Khan.

BLOOM: Why was the study needed?

Nazilla, Luz, Attia: According to the literature, racialized mothers of children with developmental disabilities bear a disproportionate burden of stress, illness and health inequities. They are triply marginalized due to factors related to their Black, Latino, Asian or Indigenous backgrounds; their gender; and because they are the main caregiver for their family. Studies associate these factors with poor health outcomes for mothers.

The study was needed because our programs to promote the health and wellbeing of women do not consider the specific experiences and needs of racialized mothers of children with developmental disabilities. Based on our previous studies, we discovered there was a need to reach out to this population to hear their specific perspectives on how society and institutions can support their wellbeing.

BLOOM: How did you define racialized mothers in the study? Were they all immigrant mothers?

Nazilla, Luz, Attia: We used the term ‘racialized’ to recognize the existence of power imbalances among the population that favour certain groups in our society and disadvantage other segments of the population. Some racialized mothers are immigrants, and others are Canadian.

BLOOM: What kind of questions did you ask in the interviews?

Nazilla, Luz, Attia: Some examples:

-What is ‘racism’ to you?

-What does a health-care provider or social-service provider need to know about your experiences with racism, and other barriers, to more effectively meet your needs?

-Who do you think can help you to do the things you want to do? (e.g. agencies, family, partner, friends)?

BLOOM: What were the key findings?

Nazilla, Luz, Attia: In this study we learned that the challenges of mothering children and youth with developmental disabilities increase when mothers are racialized. The added challenges of mothering a child with a developmental disability included the need to provide care around-the-clock, perhaps over a lifetime; financial difficulties; social stigma; being blamed for their child's disability; and lack of social support. On top of that, mothers needed to work extra hard to protect their children from racism and discrimination. 

BLOOM: It sounds like the first barrier they experience is the challenge of getting what their child with disability needs. And the second barrier is the racism they experience in the medical system and the community. Also, I noticed in your study that mothers felt stigmatized by their own families.

Nazilla, Luz, Attia: Mothers referred to the issue of service access and utilization. They felt they weren't treated equally, because of race, in learning about school and health-care resources. They felt service providers didn't give them adequate information. Some mothers felt service providers were intentionally unhelpful, or were saving those supports for other families.

One said: 'We will not have access to the same services, even the developmental services...you see how they treat the white people different than how they treat the black people. They don't give you the information that's available.'

In regards to their families, some mothers highlighted a lack of support and understanding about the specific needs of their children with developmental disabilities. They also felt socially isolated from their families.

BLOOM: I thought it was interesting that five of the seven mothers interviewed were single. Would we expect this in another population of mothers raising kids with developmental disabilities?

Nazilla, Luz, Attia: First of all, it’s important to highlight that there is stigma and stereotyping attached to marital status. In light of this, we, as researchers, don’t make assumptions about marital status among the different populations we study. In the context of our study, we understand marital status as an important factor affecting mothers’ health-promotion experiences.

As the mothers explained, lack of support from family members (including partners, husbands, mothers and siblings) is a key social determinant of their and their children’s health and wellbeing. This lack of support intersects with other determinants, such as employment, time, and other resources.

BLOOM: What were the strengths you identified in these moms?

Nazilla, Luz, Attia: Mothers discussed these strategies they use to cope with racism and discrimination in the context of raising their children:

-They teach their children about the reality of racism and how they have to work ‘twice as hard’ as non-racialized individuals.

-They practise and teach key values to their children like tolerance, respect and understanding. As one mother said: 'I raise my child to respect everybody, because I believe racism starts in somebody's house.'

BLOOM: What did the mothers suggest would help professionals provide better care?

Nazilla, Luz, Attia: A key suggestion was the need for service providers to be educated about the implications of racism in the lives of the populations they serve.

Service providers should be taught, as part of their professional development, the role that racism plays in limiting health promotion opportunities; that racism intersects with other social determinants of health, such as socioeconomic opportunities; and that stigma and discrimination are part of the everyday experiences of racialized mothers and their children.

In sum, service providers need to understand the negative impact that racism has in the lives of the mothers. Service providers need to be proactive and critical about how their own activities may be directly or indirectly reproducing discrimination or racism.

Mothers also suggested we need more service providers with diverse backgrounds; more information about services; more programs and services; and a hotline to support mothers.

BLOOM: You also interviewed three professionals who work with the black community. Were they seeing similar things with their clients that the mothers talked about?

Nazilla, Luz, Attia: The service providers we interviewed, who were of racialized backgrounds, agreed that racism exists in our society. But often racism is subtle, they said. People don’t outwardly say things, but hold strong beliefs that cause them to treat other people unfairly. Those on the receiving end may not call it racism, but talk about being disrespected or feeling insulted or shunned.

The service providers felt that racism was seen more in public places, like grocery stores and malls, but was less commonly experienced in health care. They believed that lack of socioeconomic resources—such as employment and family support—as well as language barriers, were obstacles to care, or negatively impacted the mothers’ health.

They noted that people are served on first-come first-serve basis, so people who are persistent receive the support they need. They felt diversity in the backgrounds of staff and volunteers and in program activities would help mothers feel welcome and included, and that they are treated fairly. Service providers said that they, and their colleagues, would not treat one person in line differently from another person.

BLOOM: What are next steps for this research?

To transfer our knowledge, including:

-to inform equity-based health-promotion practice policy for racialized mothers of children, youth and young adults with developmental disabilities

-to include on our website an information brief in plain language and one on video. Both will outline the health-promotion framework, and its application to racialized mothers, and other strategies will be recommended.

-to continue to disseminate findings across various venues. For example, we recently presented at the Racialized Maternal Health Conference, and at the LaMarsh Centre for Children and Youth speakers series. We will be presenting a poster at the upcoming Ontario Shores Annual Mental Health Conference.

BLOOM: If a professional takes one thing from this study, what should it be?

Nazilla, Luz, Attia: They need to reflect on how much they know about racism, and to acknowledge that racialization and racism impacts mothers’ wellbeing through their intersections with gender, privilege and power. Furthermore, they need to be critical about the assumptions or prejudices that inform their own everyday practices, and how they may negatively impact on the racialized populations they serve. Finally, service providers need to be proactive in terms of openly addressing discrimination and racism in the settings where they work.

Service providers told us that one size does not fit all. Programs that don’t really connect or resonate with the community that they’re serving are less likely to succeed. They also believed that programs need to be tailored to specific community needs. For example, they suggested dedicated programs for people who are new to Canada versus people who are born and raised in Canada.

Please watch this fabulous video about the York University study, which was funded by Women's College Hospital's The $15K Challenge. Nazilla holds the Women's Health Research Chair in Mental Health. You can follow her @YorkUOWHC. 

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'I'm calling attention to the whiteness' of health care

By Louise Kinross

Sarah Jama is a co-founder of the Disability Justice Network of Ontario. She has a long history of disability rights and anti-racism activism. While studying at McMaster University, Sarah headed the National Educational Association of Disabled Students for a two-year term. She also founded Maccess—the first peer-run service for students with disabilities at McMaster. This Wednesday Feb. 6, Sarah is speaking on Moving Toward A Disability Justice Revolution at Hart House at the University of Toronto. I learned a lot about her work through this video of a talk she gave last year called We All Deserve the Right to Life.

BLOOM: In your video, you talk about how you learned at age four that as a black, disabled girl, you didn’t have the same right to bodily autonomy as others. This happened here, at what was then the Hugh MacMillan Rehab Centre, when you came for your first physiotherapy appointment.

Sarah Jama: I was saying ‘No, I don’t want to do this,’ and they started to stretch my leg and my mom was freaking out, because she didn’t understand why it was painful. They asked her to leave the room, in order for the physio to continue, and she watched behind a two-way mirror, because she didn't want to get a coffee as they suggested.

When I talk about navigating the medical system with an immigrant family, a lot of times, without meaning to, people in medical positions play the role of the expert: ‘We know what’s best, therefore these things over time will be the best for your daughter.’ When the parent, or the person, isn’t seen to be the expert, there’s a lack of communication.

BLOOM: You said you and your mother were both in tears. Another time, when you were a teen, doctors wanted you to have a surgery. You didn’t want to have it, because it would mean you wouldn’t graduate on time with your peers. You had also had the same surgery at age 12, and it didn’t give you the result you expected.

Sarah Jama: The surgery, from my perspective, was an aesthetic one. It didn’t work the way I thought it would when I was 12. And it took four months for me to be fully rehabilitated. The surgeon looked at my mom like she was absurd in supporting me in my right to say no.

I talk about how these kinds of interactions, over time, can influence someone’s perception of bodily autonomy—that it means not having a say over certain areas of your life. Some people are viewed as experts over racialized bodies, which is dangerous when coupled with a lack of cultural competency.

An example is the criminalization of black and indigenous folks with invisible disabilities. Soliman Faqiri and Abdirahman Abdi and so many others with autism or schizophrenia have been killed by those meant to serve and protect, because being a person of colour, while having invisible disabilities, gets you perceived as being violent.

Our education system fails people with disabilities. In high school, I was given a spare in place of physical education. The school, at the time, didn’t have proper supports to support me in physical education. But that meant that I missed a lot of the sexual health education that’s taught.

We know from Statistics Canada that 82 per cent of women with disabilities will be assaulted once in their life in Canada. Sexual violence and education aren't linked at all, but we're missing key information on how to protect ourselves. The more I talk about how I missed out on that education, other people with disabilities tell me that they missed it, too.

When I’m talking about disability justice as a means to tackle forms of oppression, I’m coming at it from an intersectional perspective. The leadership, the people in positions of power, don’t reflect the disability community itself.

Within that, I’m calling attention to the whiteness of the structures that prevent people with disabilities from diverse backgrounds from being able to participate in all facets of education and health care, or result in them being perceived as violent.

BLOOM: You are the founder of the Disability Justice Network of Ontario. What is the purpose of that network?

Sarah Jama: Our vision is to create a world where people with disabilities are free to be. Our mission is to build a just and accessible Ontario where people with disabilities have personal and political agency, can thrive and foster community, and can build the power, capacity and skills needed to hold people, communities and institutions responsible for the spaces that they create.

BLOOM: What needs to change?

Sarah Jama: The problems are structural. The conversations around accessibility today are stuck in the ‘90s. We talk about people needing access so we can expend our economic purchasing power. There aren’t enough conversations around how people with disabilities who move through our education, medical and prison systems have a right to equity in these spaces, and how racialized people with disabilities navigate these spaces differently.

Another structural change that needs to occur is in our provincial and federal budgeting. A lot of funding goes towards children with disabilities. That funding becomes minuscule in adulthood. It’s as though people with disabilities don’t exist in our adulthood—we disappear.

The lack of education created for people with disabilities needs to be addressed. How are we training young people in the history of disability justice? Where do you learn this? I had to do a lot of self-learning about how disability rights came to be.

Systemically, I was taught that when you have a problem, there are systems in place to support you. For example, if you have a problem in school, you go to 'student accessibility services.' But what do you do when that system doesn’t work for you? The conversation around justice and rights is not happening in our education system. 

The important thing for young people with disabilities to know is that you don't have to resign yourself to using the structures in place.

We're the largest minority in the world: we fit every religion, race and geographical location. Someone with a disability who experiences structural issues should understand that not being able to navigate spaces easily is tied to root causes. People with disabilities don’t fit the common understanding of productivity, so we are least likely to have a system in place that fits us, especially if we’re seen as not being able to contribute back.

I was able to push my university to allocate $30,000 to fix elevators that were broken. I also created Maccess, which is an organization run by students with disabilities for students with disabilities. At Maccess, students taught self-advocacy skills and had peer supports in place.

BLOOM: Something I valued in your video was that you talked about the rights of people with all kinds of disabilities—including people with intellectual disabilities and mental illness. I often see people with one type of disability distancing themselves from people with other types.

Sarah Jama: I think it has a lot to do with funding levels. Autism Ontario is funded one way, the Ontario Federation for Cerebral Palsy is funded another, and all of these groups end up competing for support, fracturing community instead of building it.

Disability organizations aren't built to be part of a greater community that collaborates. The way to combat that, 100 per cent, is for everyone to come together and acknowledge that we're part of a larger community that historically has been left out of many parts of society.

We're also part of an ever-growing community. One of the leading causes of disability is old age, so everyone at some point will experience it. The sooner we come together to build a community that fits all people with disabilities, the sooner we’ll have a world that fits everyone.

BLOOM: You talk about how people in our culture confuse the rights of people with disabilities with their value to the economy.

Sarah Jama: I think that’s a faulty and harmful argument. So many people with disabilities can’t work, and do they have the right to exist then, if they can’t contribute? It’s similar to the way seniors are treated. Once they age out of the workforce, they're seen of as disposable.

We see conversations in the public media now about the right to assisted suicide. What about the rights to supports during life? Why does more funding go toward prenatal screening of Down syndrome—and I’m pro-choice—but not toward supports for adults with Down syndrome? The issue lies with institutions  pre-deciding where someone can access support. Who really deserves life, and who has the right to exist?

You have to earn your value, or you’re a burden on society. Couple that with youth with disabilities not knowing about their rights, or that there’s a community of people who have fought for their rights, and by the time they turn 18, depending on their capacity, they struggle with self-esteem, with having community and with understanding their worth. They don’t know that it’s their right to have help and support.

BLOOM: I liked the way you question our culture’s obsession with independence.

Sarah Jama: We’re obsessed with the idea that you’re worth more if you don’t need anybody. It’s a strange cultural phenomenon that doesn’t make sense. No one is truly independent from anyone else.

Mia Mingus has written a lot about interdependency, and how we should be able to go to our communities and find supports, and not see it as a loss of autonomy, but moving toward a larger collective of potential.

For example, nobody tends to be able to survive without going to a grocery store. But that food comes from a farmer. You didn’t package that food and put it in the grocery store. You’re dependent on the structures that are in place, and the community that puts that grocery store in place. We need to teach kids that we all sort of rely on each other, and that’s okay.

BLOOM: I noticed you're working with the Hamilton Wentworth District School Board to create curriculum to address anti-black racism. Is this something we need to work on with staff and families in children’s rehab?

Sarah Jama: Yes, I think so. I’ve created a black youth mentorship program for 40 black youth that meets monthly at Sir John A MacDonald Secondary School in Hamilton to talk about their worth and the way to navigate society and the supports in place for them.

On Feb. 12 we have Robyn Maynard coming to speak with them. She wrote Policing Black Lives, which is an acclaimed book on the history of policing in Canada. We also have Sandy Hudson coming, who is one of the founders of Black Lives Matter in Canada. On Feb. 25, the same youth will be meeting with black elected officials at Queen’s Park to talk about being black and navigating politics.

BLOOM: What advice would you give parents raising kids with a wide variety of disabilities?

Sarah Jama: As much as possible, have conversations around the history of disability in Canada, and how we got to a point where we have a federal piece of legislation. Who are the movers and shakers in our communities? What provincial legislation do we have? What communities have pushed for the rights of people with disabilities to exist equally and freely? It’s important for kids to grow up knowing that there’s a community, because a lot of us internalize our experiences. 

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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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'Being a black male is...a safety issue over and above autism'

By Louise Kinross

Many of you know Amy Ma, who is chair of the family advisory council at Montreal Children’s Hospital.

Recently, Amy told me she'd heard a parent speak at a Black History Month event about her fears for her sons, who are black and have autism, and the racism and ableism they will face.

That parent is Sazini Nzula, and she lives in Montreal. Sazini has a PhD in medical microbiology and worked for years as a scientist. Sazini has two sons—Ethan, 11, and Jayden, 7. After Ethan was diagnosed with autism, Sazini trained in Qigong Sensory Treatment, a type of evidence-based massage that helps reduce sensory issues in children with autism. “At the time, we had to wait two years to get an autism diagnosis in Montreal, and another two years to get government help,” Sazini says. “This was a method that parents could use by themselves while they waited.” While teaching parents, Sazini was inundated with questions about other aspects of parenting children with autism. She now provides personal coaching to parents. Her book Beautiful Inside and Out: What You Ought to Know about Autism was just released. We spoke about Sazini's experiences with stigma related to race and disability.

BLOOM: Can you describe how Ethan and Jayden are affected by autism?

Sazini Nzula: Ethan still has language delays and only really began speaking when he was about nine. Before that he could say words, but now he actually talks. He has huge sensory challenges, which are better than before, and trouble with self-regulation. He has issues with behaviour and last year at school was horrible for him. This year is going well.

Jayden has challenges focusing and staying on task. He sometimes needs to wear noise-reducing headphones. Jayden also struggles with social interaction.

BLOOM: What has your experience been with stigma related to disability and race?

Sazini Nzula: There’s stigma from the black community, and then there’s stigma in general.

BLOOM: How are they different?

Sazini Nzula: In the black community it’s about having an invisible disability to do with the mind. I’m African, and it doesn’t matter how educated people are, there's still a tie to traditional African beliefs about witchcraft, because it’s scary and they can’t see it, so they don’t understand it. When it’s a physical disability that you can see, they can process that better. But if the mind is different in some way, it must be because of an evil omen.

BLOOM: I’m recalling now a story we did with a Nigerian mother who explained that disability is viewed as a taboo there, as something evil that brings shame on a family and is caused by the parents. Do you find that even when Africans have been Westernized, that some of these traditional beliefs are still deeply embedded?

Sazini Nzula: Absolutely. When Ethan was two I met a man who was educated in the medical field, and he told me he hadn’t told his brother that his child had autism, and the child was nine. I did some research and learned that in Nigeria and Kenya, surveys of doctors, special education teachers and social workers found these traditional beliefs about disability are still there. The stigma of disability is also a huge problem in Japan and South Korea.

BLOOM: I remember a parent here who explained that when her child was born with disability, for the first year, they were unable to tell anyone in her husband’s family, because of how disability was perceived in his community. So they had to make intricate excuses to prevent that side of the family from meeting the baby in person.

Sazini Nzula: In the part of Montreal that I live in, there aren’t that many black people. I remember meeting a Haitian social worker at a cultural event, and she told me that families were happy to speak with her about their children with autism, but they didn’t want other families in the community to know. So they wouldn’t come to events for families.

BLOOM: How do you deal with the stigma of disability in the black community?

Sazini Nzula: I chose not to let it affect me. I chose to tell everyone that my children have autism. I don’t have to hide it and there’s nothing to be ashamed of, in the same way that I wouldn’t be ashamed if my sons had diabetes.

What impacts me is stigma in the general community. For example, one time we were in a supermarket and my older son got separated from us. He can’t speak French and we live in a francophone province, so he pushed past someone to come and join me, and this woman went on and on about how he’d been badly raised, and how in this country we teach our kids manners. But my kids were born here. Had my son been a white kid, she probably would have said something similar but not ‘in this country.’

As my son gets older and taller, I started to be afraid of being outside. When I was at the Black History Month event, I talked about how we came home one night at 5:30, and it was getting dark. My son was having a hard time and he was running down our street. He ran past the two neighbours I know very well, who understand his issues.

My first thought was what if someone calls the police, and says ‘there’s this black kid in the dark running down the street.’ We have a police station within walking distance. I thought if the police got to him before me, there was a chance that things would not have gone well. Being a black male is definitely a safety issue over and above having autism.

BLOOM: We’ve certainly seen stories of autistic youth or adults who are assumed by police to be doing something illegal, because they won’t comply with what the police ask, or they have certain behaviours, or they aren’t able to explain their situation.

Sazini Nzula: That happens everywhere, whatever the race of the person. What I see as an extra factor is my black child who looks out of place in our neighbourhood. He might not be able to comply with the police commands, or, because the police speak in French, he might not understand. Even if he is spoken to in English, he might not be able to process it. Now that’s my big fear.

BLOOM: I understand you have tried to develop a relationship with the police?

Sazini Nzula: I’ve been taking my kids to the local police station since my son was four. My idea was to get my kids used to seeing the police as their friends, and to develop a relationship with the community relations officer, so that if anything happened in our neighbourhood, they would be the first to respond.

I called and explained I had a kid with autism and was wondering if I could drop by. I said I was teaching my son that police are safe people they can approach. Our experiences were good. What I’d love to do in future is go and do an actual presentation.

BLOOM: What advice would you give other parents raising black children with autism?

Sazini Nzula: My biggest fear is involvement with the law. We have to develop an understanding with law enforcement to make sure our kids don’t get hurt and make sure our kids are understood.

I have a nephew who is able-bodied and well functioning, and I’ve seen situations where he’s not treated well by police, and he’s done nothing. When I put the disability on top of being a tall, strapping, black male, we really have to be aware and be vigilant and empower our kids.

BLOOM: Do you talk to your sons about racism?

Sazini Nzula: With my older son, he’s not at a level of social awareness where he would notice if it happened. So for now I tell him if he feels he’s in trouble or not safe, to call mommy or to call the police. We’ve talked about calling 911 in an emergency, and my kids are good with numbers and use their cell phones.

In Grade 1, a student told my younger son ‘brown people are dirty and stupid.’ So I did talk to him about race. In his school, which is a public school, there aren’t that many people who aren’t white.

BLOOM: I loved one of your blogs where you talked about having a jar that you regularly drop memories of awesome things your kids do into. Can you explain?

Sazini Nzula: It’s a way to focus on the good things. Last year, when I think of my older son’s school year, I remember all of the calls from the psychologist, all of the meetings, and all of the really negative stuff. Plenty of awesome things happened, but I can’t tell you specifically what happened at school.

I thought this year I’m going to make sure I remember. Yesterday, we went to see the movie Peter Rabbit. For us, that was the first time we saw a movie that’s not adapted. It was for anyone, and there were lots of kids, and the sound wasn’t reduced. My son sat through, even though he forgot his headphones. That was awesome for us.

So I write the date on a sticky paper and write something that stands out, and drop it in the jar. I think it will make me even more aware of when awesome things happen. I’m capturing them, and I appreciate them more.

My plan is that if we go through a really challenging time during the year, I will pull them out to read and remember all of their victories. And certainly at the end of the year, we will read them to remember what happened.

BLOOM: You just released a book. What's it about?

Sazini Nzula: It’s to acknowledge that it’s difficult, but that as parents we need to embrace the uniqueness that our kids bring to the table. One of the subtitles is: ‘How to embrace the unique way your child is flourishing.’ So the message is that you need to go with your child, whoever they are, and still live your dream.

BLOOM: Is the book only relevant to parents of children with autism?

Sazini Nzula: No, it’s useful for parents of children with other disabilities. There’s a practical chapter, for example, on preparing your kids for adult life, and preparing yourself, the parent, with financial and estate planning.

BLOOM: Do you talk about race in the book?

Sazini Nzula: I do talk about the stigma of autism or disability, but not in the way of race. I have a chapter called ‘Life in An Autism-Unaware World.’ I had originally written about race, but the editors suggested I make it more relevant to everyone and I took it out. I plan to publish those sections on my blog instead.

BLOOM: I think there would be a real appetite for your writing in that area. I know I’d be interested!

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A girl who wanted to disappear becomes 'The Pretty One'

By Louise Kinross

Keah Brown is an American writer working on a book called The Pretty One, which is a collection of essays about living as a disabled woman of colour in a white, abled world. Keah studied journalism at the State University of New York at Fredonia and lives in Lockport, N.Y. She’s a senior entertainment writer at ClicheMag.com, and her essays have been published in The Rumpus, Harper’s, Teen Vogue and Lenny Letter. I first heard about Keah a year ago when she launched a photo campaign with the hashtag #disabledandcute on Twitter and it went viral. I wanted to talk to her about the impact of racism and ableism when she was growing up.

BLOOM: How did your experiences as a black, disabled woman figure into your desire to write?

Keah Brown: Writing is something I’ve always done. Even in secret, when I was growing up, I had little notebooks that I’d write songs in. And the songs would become poems, and the poems became stories, and it was a natural progression.

When you grow up not seeing yourself represented in any form of media outside exploitative telethons, you get the urge to say ‘Hey, that’s not how any of this works.’ I’m here to tell my story because I don’t want to be forgotten, or be assumed to be a certain way when I’m not.

The Pretty One is about our need to change the culture and the ideas that shape the way we see disability, because they’re harmful. The Pretty One is about joy, and about finding a way to the other side of what is self-hate or poor self-esteem.

The narratives we usually see are about people with disabilities who hate their bodies. We often see that in movies, where a disabled character wants to die. I wanted to showcase how someone who feels those things comes out of it—and the work that takes—and the process of getting to be a person who is very much joyful and happy and full, in a way she never was before.

Obviously there’s going to be a bit of heartbreak and loss and grief. But ultimately The Pretty One is about joy.

BLOOM: So the book is written as a series of essays?

Keah Brown: It’s a collection of 13 personal essays, at this point. I'm not sure if that will change. We’re shooting for a release date of spring 2019.

BLOOM: You’ve written about having cerebral palsy. How does it affect you?

Keah Brown: I have hemiplegia, so it affects my right side. I’m able to walk, but I need to take breaks, and I get aching limbs and arms and hips. But at this point, I don’t use a mobility aid.

BLOOM: Last year you wrote a beautiful piece on Roxane Gay’s book Hunger in The Rumpus. It begins like this: ‘There’s a moment in every day where I think of my younger self—the fifteen-year-old me, the sixteen-year-old me, and the twenty-year-old me who prayed morning, noon, and night to be rid of my body. When I was younger, my scars, bruises, bent fingers, limping leg, and crooked lips disgusted me.’ In the essay, you write about your desire for invisibility when kids would ask you what was wrong with your body.

Keah Brown: Because I wasn’t surrounded by many other disabled people, let alone kids, I saw my disability as this thing to run away from, or to try to pretend that it wasn’t there. I had a very happy childhood from kindergarten to Grade 5, and Grade 6 was when I realized I had a disability.

With my other siblings—I have a twin sister and a brother—they’re able-bodied and my mom never treated me any different. Whatever they got I got, and we never talked about my disability in terms of it being this difference and that difference was bad.

Then when I got to middle school and kids made fun of me in the cafeteria, it kind of stuck with me. If someone made fun of this thing that was different, then it must be bad. So I spent a lot of time wishing to be invisible and wishing that I would wake up in another body. I felt I was being punished in the body I had. I wanted to be just like everyone else and to blend in. I was tired of people asking questions and staring at me.

BLOOM: What would you tell other children whose differences make them want to disappear?

Keah Brown: The best advice I can give is that they are who they are, and all that they are is enough. It’s not only enough, but it’s beautiful and worthwhile, and their bodies tell a story. It doesn’t matter if they don’t look like a certain person, or look a certain way. What matters is that they figure out who they are, and celebrate that. That is the person they're stuck with for the rest of their life, so it’s important that they learn to love that person.

BLOOM: You’ve written about how when children don’t fit conventional European white standards of beauty, there’s almost an expectation that they should hate their body.

Keah Brown: Absolutely. There’s this idea that if you’re different you should feel bad about being ‘other’ and breaking the mould. When you do that, people don’t know what to do with you. They assume you don't know what to do with yourself, and you should be uncomfortable, because they’re uncomfortable. To those of us who are different, our differences make us unique. Those unique things make us who we are, and who we are is enough.

BLOOM: You created the Twitter campaign with the #disabledandcute hashtag. What did you hope to achieve with that?

Keah Brown: I didn’t hope to achieve anything. I started it for myself and posted four pictures and the hashtag, just to celebrate myself and other disabled men, women and non-binary people. I wanted to say ‘Hey, I finally feel good in my body and you should too.’ Then I left Twitter and went back to an essay I was writing on a deadline.

When I came back, #disabledandcute was trending. By the end of the week I was interviewed by a bunch of different publications, and I learned that #disabledandcute went viral and spread from Twitter to Facebook to Instagram and Tumblr.

I began it to try to celebrate myself, but it became a thing where all disabled people could celebrate themselves. That’s what I’m grateful for. It will be a year this Monday that I posted it.

BLOOM: As a child, how did you experience racism and ableism.

Keah Brown: I didn’t really know what they were as a child. People would speak to me really slowly and would be condescending, as if they assumed I didn’t understand them.

I was never ashamed of being black and in terms of racism, we were sheltered from most of that in my childhood. There were small comments that people made. But never anything that I really had to internalize or keep to myself, in the way I had to with things people said about my disability. Disability as a 'bad' thing outweighed my blackness.

I was always very proud of being black and confident that being black was something beautiful. I grew up in a household of other black people who loved themselves, so I loved myself too. Our blackness was something we had in common, whereas disability was the thing we didn’t share.

I felt disability separated me from my twin sister. I just wanted to be like her and look more like her. I wanted all of these things I thought she could have that I couldn’t have.

BLOOM: Was disability accepted in your family?

Keah Brown: I did feel accepted. I have a humongous family and they were very much always ‘That’s just Keah. It’s who she is.’ My disability wasn’t like a thing that people were weird about. It was what it was. It wasn’t something we addressed or ignored, or pretended that it wasn’t there. It was seen as an aspect of me, but it wasn’t all that I was.

BLOOM: Did you ever feel your disability was marginalized in the black community?

Keah Brown: Not really. The majority of the comments I received as a child—and even now—come from white people. People of colour tend not to say much to me about my disability, unless they know me. The stares and the mocking and the talking slowly is a thing a lot of white people have done. Most of the rough experiences I’ve had have been from white people.

BLOOM: You’ve written about lack of accessibility. What message does it convey to people with disabilities?

Keah Brown: In my freshman year in high school I had a big surgery, and then I had to come back a year later and have a plate taken out. That’s when I realized how inaccessible the building was. There was a kid named Mason who used a wheelchair and I used a walker, and we had to go to the back of the school just to get into it. The elevators were really slow and it took us longer to get everywhere.

These are all things abled people take for granted—that they can get to and from places without any problem.

Today, it's still a really big issue for me. I can’t get down the stairs safely in a mall. Going up the stairs is fine, but coming down I have to reach my left hand over my right arm to hold the rail.

What was good in my childhood was that there were always people around to help me before I knew I needed help. They helped me figure out ways to trick an inaccessible system. That's how I figured out how to put my left hand over my right one to get down stairs.

Or if I’m standing for a long time, I shift my weight from left to right so that my whole right side isn’t aching by the time I move again.

I spend a lot of time in my house, which is very accessible, and in my room where I write. It’s a single level house with a basement that's easy for me to get down to.

I’m able to figure out how to navigate in my own house. The issue starts when I get to public places and they don’t have the same accommodations.

BLOOM: I read that you went to a largely white high school and college. How did that affect you?

Keah Brown: I think what I know now I couldn’t articulate then. When you don’t see enough people who look like you during the day, you start to retreat into yourself. Even though there’s nothing wrong with my black skin, you keep some things to yourself, because you’re trying to navigate a world that's vastly different from the one you knew before.

In a primarily white institution, I was taught mainly about white writers and journalists. I had to look outside the classroom for writers of colour, and to find heroes of my own who looked like me.

The way I handled those experiences was to lean on other people of colour who could commiserate with me. They understood what it’s like to experience multiple micro-aggressions from other students.

BLOOM: Were these people outside the school?

Keah Brown: No, they were the few other black students. We’d acknowledge each other with a head nod and eat lunch together and go to the movies and hang out.

BLOOM: You said that your book is about the process of getting to a point where you love your body and celebrate it. How did you get to the other side?

Keah Brown: Girl, a lot of tears and definitely counselling, and trying. I tried for the first time. What I’ve found is that sometimes you want something but you don’t really work for it. I had to really confront my own problems with disability, and not just my own disability.

I had to confront my own internalized ableism and views about what disability is and what it can be in order to make myself a better person.

I got tired of living my life like it was the world’s worst punishment. I got tired of getting up and feeling like ‘I hate you, you’re ugly,’ and insulting a body that was doing the best it could to keep me alive.

I thought I was giving myself these insults to prepare myself for when other people said them. But it never made me feel better.

I had to actively try to be kinder to myself. I found something I liked physically and mentally about myself, and worked every single day at it. Self-love and self-worth is an everyday practice. This is not a one-time thing. It’s a constant.

BLOOM: You mentioned counselling was helpful. Was it hard to find a therapist who understood about disability?

Keah Brown: I went to counselling at college because it was free. The first counsellor, while I’m sure she was a lovely person, didn’t work out. She treated me as though my self-hatred was something I should just be over.

That’s an issue that sometimes happens when a person doesn’t have physical disabilities. They don’t feel comfortable around disability, so they want you to be over it, and not talk about it.

The second counsellor I had was brilliant and did a really good job.

Counselling helps. I also had to do a lot of internalized work where I acknowledged that I’d met these disabled people online that I love, and they mean the world to me, and it was time to start looking at myself with that love.

Throughout my time of self-discovery I also read books and found fictional characters to fall in love with and grow with. I found bits and pieces of things they did that I thought I could emulate.

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'I am woman, I am black, I am doctor'

By Louise Kinross

Chika Stacy Oriuwa has written a brilliant piece in Flare about being the only black medical student in her University of Toronto class.

Chika recounts coming to her first Black Medical Students Association meeting at U of T and realizing she was the only black student in her class of 259. “As I arrived at the venue for the social, my anxieties surrounding the perfect attire for the evening slowly gave way to a sobering realization. I was the only one.”

Chika is now in her second year. In her poem above she speaks about what it's like to study medicine in a culture where racism creates this conundrum: "How can you be both doctor and black?"

In her Flare essay, she notes that while there are more than 627,000 black people living in Ontario—making this the third largest visible minority group in the province—the Canadian Medical Association does not track the race or ethnicity of doctors.

She questions the lack of racial diversity in teaching materials and asks: “Where are the black tutors and professors?”

Chika writes about the importance of racial diversity in medical training and in healthcare. In the classroom, it allows for the sharing of different health perspectives, she writes. In the field, minority patients tend to seek out and report receiving better care from those with whom they identify.

She references U.S. data that shows black patients often face discrimination in their care.

She also writes about the experience of racism against black doctors. For example, after showing up for his shift in a Vancouver hospital in plain clothes, Dr. Boluwaji Ogunyemi took a pair of scrubs and stuffed them in his backpack, she writes. A ward clerk then accused the resident of stealing the scrubs.

Given her lack of black peers and professors, “when was I going to learn how to deal with receiving and internalizing racism and discrimination at the hospital?” she writes.

BLOOM has written about a number of American studies that tracked racist comments from patients to doctors and among medical professionals.

On a positive note, Chika says that the University of Toronto has developed a new Black Student Application Program at the faculty of medicine, and that six black students are part of this year’s incoming class.

The school has also created a teaching position that will involve designing a Black Canadian Health curriculum.

Chika says members of the Black Physician Association of Ontario have been great personal mentors to her, as has Dr. Lisa Robinson, the chief diversity officer at U of T’s medical school. “When Dr. Robinson was a medical student at U of T in 1991, she was one of two black medical students in her year,” she writes.

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Racist, sexist words by patients, work peers plague hospitals

By Louise Kinross

In the last month, a few studies about racist and sexist comments in medicine crossed my desk. One survey is about bigoted comments made by patients to doctors. Another is about misogynistic remarks from medical staff to female doctors and nurses.

I also learned about a St. Louis University surgical resident who is suing the school and two of its medical school leaders because she claims she was discriminated against as a former nurse. “Stop being a nurse,” “too much of a nurse,” and “too nice” are comments the resident alleges supervisors made.

The studies I received are American. I'd like to know if similar studies in Canada exist. A quick search revealed only this 1996 piece in Studies in Political Economy: Anti-Black Racism in Nursing in Ontario and this position paper on violence, including verbal abuse, against nurses by the Registered Nurses' Association of Ontario.

In the first survey above of over 800 U.S. doctors, 59 per cent had received offensive remarks related to their age, gender, race or ethnicity in the last five years. African-American and Asian-American doctors were more likely to be on the receiving end of these verbal attacks, and female doctors were more often recipients than males.

As a result of these comments, 47 per cent had a patient request a different doctor or ask to be referred to a doctor other than the one recommended. Most physicians in the study, conducted by WebMD and Medscape in collaboration with STAT, said they had no training on how to handle these comments and were unaware of policies to aid them. In this STAT article about the study, eight doctors shared their stories of discrimination.

The second survey focused on bias against female doctors and nurses (the number of survey respondents isn't noted). The survey was conducted online by resident physician Morgan Shier at Providence Hood River Memorial Hospital in Oregon. 

When asked if they had ever been mistaken for someone in a position different from theirs, 71 per cent said "yes." Female physicians said they were most likely to be referred to by patients as “nurse,” even when they introduced themselves as the doctor. When asked if they’ve experienced sexual harassment in the workplace, 44 per cent of respondents said “yes.”

A third said gender played a role in them missing out on a raise, promotion, or key assignment. One participant wrote: “I was in line to do compressions in a code. A resident told me that women were not allowed to do them. When I asked why, [he] said ‘women were weaker and bad at it.’…I was kicked out of the room.”

Of 21 participants who identified as female and an ethnic minority, 67 per cent said “yes” when asked if they had to provide more proof of competence than others at work. Wrote one: “I've often been told to rely on being a black female to get ahead in life or that my placement in a residency program would fulfill affirmative action quotes.” 

When asked if females supported one another in medicine, 39 per cent said “no.” Wrote one: “The environment is so cutthroat that people in general don’t look out for one another.” A third said the role of the U.S. President and Congress played “an extremely important role” in addressing women's issues at work. Said one: “When Trump won, the boldness of racist and sexist healthcare workers instantly surfaced.”

A third study, published in the Journal of Women’s Health in May, found men introduced male speakers as doctors 72 per cent of the time at over 300 Mayo Clinic grand rounds, but only 49 per cent of the time when the speaker was female. In the latter case, they were more likely to call the doctor by her first name. This was interpreted as a lack of respect. I wonder if it in any way indicated that the female doctors were more approachable, which, from a patient and work peer perspective, is a good thing?

Which got me thinking about the doctors who criticized the St. Louis University surgical resident for being “too nice.” What patient or family has ever complained about a doctor who cares too much? 

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