CEO Blog: It’s time to #MakeKidsCount and prioritize children’s health care  

Holland Bloorview and other members of the Children’s Health Coalition recently joined forces to call on political candidates and party leaders to #MakeKidsCount with a $1 billion investment to create and implement Ontario’s first-ever Children’s Health Strategy. 

I want to share a story with you about a young girl named Genesis. Genesis, 5, loves to watch videos, sing and spend time with her family. One of her favourite activities is being in nature and listening to the songs of the birds chirping in the trees above.

Photo description: Young girl with brown hair wearing a purple art smock sits at desk in therapy room at Holland Bloorview.

Lately, it’s been a lot more difficult for this little girl to enjoy the things she loves. Genesis has cerebral palsy and microcephaly, a rare neurological condition in which an infant’s head is significantly smaller than the heads of other children of the same age and sex. Both of Genesis’ hips are dislocated due to her cerebral palsy and she experiences daily, severe pain that impacts every aspect of her life. The only way to end her pain is for Genesis to undergo complex specialized orthopedic surgery. She’s been waiting more than a year already and she, and her family, don’t know how much longer it will be.  

Genesis has been coming to Holland Bloorview since 2018, where she receives care from an integrated team of nurses and doctors as well as physiotherapy, occupational therapy and language therapy services. She has also been on a waitlist for gastric tube surgery for over a year, which her mother is hoping will address some of her ongoing feeding and weight loss challenges.

Wait times for orthopedic clinics and surgery were an issue before COVID-19 hit, but have been exacerbated even further by the pandemic. As my colleague Dr. Darcy Fehlings, developmental paediatrician at Holland Bloorview and a senior clinician scientist at the Bloorview Research Institute, explains, orthopedic issues in children with physical disabilities tend to progress over time.

“Once surgery is required, and the longer the issues are left untreated, the surgeries can become more complicated and may be less effective.”

“Longer wait times also make it more difficult for caregivers to manage their child’s symptoms, including chronic and severe pain – in this case related to pain from chronic hip dislocation,” adds Dr. Fehlings. She adds there can also be “tremendous ongoing stress and mental health issues” associated with caring for a child with significant pain and the anxiety of not knowing when surgery will happen.  Longer wait times also continue to stress the healthcare system as families have no choice but to visit emergency departments and primary care providers for support and symptom relief.

It’s a familiar story for Genesis’ mother Azucena who has had to rush to the emergency room multiple times during the pandemic—too many to count—because her daughter is in severe pain and isn’t able to lower her legs because they’re completely dislocated. As a result, Genesis isn’t eating or sleeping well. She’s crying a lot. “They only give us (pain) medication. That doesn’t help a lot. I thought the surgery would be a lot sooner.

“I just don’t know how I’m going to cope if the surgery is going to be that far away. It affects me very deeply because she’s my daughter. It’s very devastating.”

Genesis, and the more than 16,000 other Ontario children waiting for surgery actually have to wait longer than adults. On average children in this province are 50 per cent more likely than adults to be waiting more than is clinically acceptable to get much-needed surgery. When I first heard this I was shocked. I still am every time I think of the statistic and, more importantly, the children like Genesis behind the data.

Improving kid’s physical, developmental and mental health isn’t a partisan political issue. With the provincial election upon us we need kids and their health to be at the centre of every party’s campaign.

That’s why Holland Bloorview, together with other members of the Children’s Health Coalition (CHC), are calling on political leaders and candidates to #MakeKidsCount as part of a bold new action plan for a children’s health system. Kids’ health needs to be made a priority and the CHC is asking candidates and leaders across the political spectrum to be committed to building an Ontario where children and youth have timely access to the care they need.

The plan calls for the next government to:

  • Invest $1 billion over four years in the Make Kids Count Action Plan
  • Convene a cross-sectoral children’s health summit with government, specialized children’s health care organizations, and health care providers to agree on principles for a long-term provincial Children’s Health Strategy
  • Develop and release Ontario’s first-ever Children’s Health Strategy

The work can’t happen soon enough. Because every day matters in the life of a child when it comes to their health and development. Sadly, over the course of the pandemic we’ve seen children’s surgeries and rehabilitation services get repeatedly cancelled. A generation of children and youth will experience harm to their physical, developmental and mental health without immediate implementation of the Make Kids Count plan.

For now, Azucena says her entire family has been doing its best to manage—but it’s not easy. “My husband works to support our family and some days he isn’t able to work. It’s very overwhelming for my son as well. It affects us all on a day-to-day basis,” she says.

Azucena’s message to the next government? “There are countless children…who have very complicated lives and need these surgeries. It’s very hard to see your child suffer being on a waiting list and not being able to move. I just hope things get better.”  

To learn more about Children’s Health Coalition’s #MakeKidsCount action plan visit: https://www.chcontario.ca/

We need to talk

I’m delighted to welcome Rachel Kwok as guest blogger for my September blog. As Holland Bloorview Kids Rehabilitation Hospital kicks off the 5th year of our award-winning Dear Everybody campaign, voices like Rachel’s are behind every part of the campaign and experiences like hers and those of the thousands of children and youth who are our clients, motivate Holland Bloorview to want to lead and model social change. Join our movement to end ableism. Read Rachel’s post to understand why.

Julia Hanigsberg, President & CEO


Picture yourself at seven years old. What were you like? Bright-eyed, bushy-tailed? I know I was.

At seven, I was entering Grade 2 and entering public school for the first time. After three years at Bloorview School Authority, I was entering a new school, where I was only one of three kids with a disability in a population of close to 800. I went from being close to 90% of the school’s population to 0.004% in public school.

Within my first year, kids would come up to play with me. I always noticed how they’d be gentler, softer, kinder. But the eyes were always strange.

At the time, I had no clue why it was a big deal. Then I later found out: it was ableism.

All my life, I’ve been looked at differently. While I don’t believe it is malicious in intent, I do notice the stares, or how people underestimate my abilities and they come from everyone. People would say things that were weird too. I was always so confused since I didn’t understand what was happening. Until someone taught me.

When I was 15, I was in my academic math class when a supply teacher entered. I was already tired from musical rehearsals at 8:30 in the morning when the teacher walked over to me and we had the following exchange.

Supply: (Completely unprompted) So are you in all regular classes?

Rachel: (Confused; trying to open a binder) Uh, yes?

Supply: So where’s the elevator?

Rachel: (Still confused) Down the hall…

Supply: (Leaves)

For the rest of math class that day, I felt horrible, more so than I usually did being in a math class. Did my supply think that I was ”dumb” because I used a wheelchair? What did he mean by regular classes? Did he think my wheelchair made me incapable of learning? I’ll never know. What I do know is what happened next.

My health assistant came to pick me up at the end of the class. Noticing something was wrong, she asked me what was bothering me. I simply stated I was tired. I got through my next class, uncharacteristically quiet. But, finally, at lunch, I snapped.

I marched straight to the Student Success room, where a Child and Youth Worker I trusted had set up shop. What came out of me was no less than a hurricane of words, a rant. She got up and quickly marched me down to the office, where she told me to talk to the vice principal. I, being terrified, did so, when she told me: “These comments are unacceptable, I will talk to him.”

At the time, I had no clue why it was a big deal. Then I later found out: it was ableism.

Although the education system has improved greatly since the 20th century, ableism is still a term not covered in most elementary school social studies classes. See, unlike racism or sexism, ableism is a topic glossed over or ignored entirely, especially because there are many schools that don’t have students with disabilities.

When I was finally exposed to the term ableism, a breakthrough really happened for me. I finally had a word for all of the experiences I had endured as a child and preteen. If only I’d been able to articulate it when I was young.

I’m capable of quite a lot. More importantly, I really like proving people wrong.

It’s been three years since I first heard the term but I realize that not everyone around me has had the opportunity to learn; whether it be a lack of resources or simply ignorance, these things just remain unseen. I want to be a part of changing that.

This year, Holland Bloorview’s #DearEverybody campaign talks about ableism in various aspects of youth’s lives. Whether it be in the media, play, or sports, the youth involved want to make it known that just because we utilize mobility, speech, or other devices, doesn’t mean we’re incapable of “regular activities.” Just ask me.

I, in my young life, have taken horseback riding, swimming, ballet, and music lessons. I’m heavily involved with my church. I love theatre, music, writing, politics, and reading. I have friends and a family that I love very much. I’m capable of quite a lot. More importantly, I really like proving people wrong.

So, here goes.

Dear Everybody, my name is Rachel Kwok. I’m 18, I use a wheelchair. That’s what you can see. There’s more to me than that. Talk to me. I have far more to offer.

– Rachel

Dear Everybody,

We’re asking you to join the cause to end ableism in Canada.

Last year, over 20,000 Canadians signed the Dear Everybody Agreement and we were successful in having over 90 brands commit to including disability in the picture. This year we’re encouraging more tangible action to end disability stigma and calling on all Canadians to initiate conversations about ableism because it’s time to #EndAbleism.

Visit DearEverybody.ca to get started.

CEO Blog: Listening for the Impact of Anti-Asian Racism

This year has been more than the year of the pandemic. It was also been the year of what some have called our “racial reckoning.” For East and South East Asian-identified people, both have come together as incidents of racist hate, harassment and violence have accompanied the COVID-19 pandemic. On March 16th, a series of mass shootings occurred in Atlanta. Eight people were killed, six of whom were Asian women.

In the wake of this terrible tragedy, Holland Bloorview held a safe space discussion for our East and South East Asian-identified staff facilitated by the Chinese Canadian National Council for Social Justice. For this month’s blog post, several members of our team were willing to share the impact of the Anti-Asian racism in their lives. I am very grateful to Amy Hu, Kara Merpaw, Aiann Oishi, Carmen Tan, Clara Ho, and Stewart Wong for their candor and bravery.

Above: “If you had to use three words to describe the way you felt after you learned about the hate crime perpetrated against Asian women on March 16th in Atlanta, Georgia –what would those three words be?”

As someone who identifies as East or South East Asian, what do you wish people could understand about how you experience the world? 

Carmen: I wish people could understand me like any other individuals or any other racial identifies with unique experiences and characteristics, and not use their personal biases and make any assumptions to group me into popular stereotype for people of East Asian descent as “never complain” or “only follow by rules”.

Clara: Like all racial identities, being East Asian is complex and intersects with many of my other visible/invisible social identities, such as being a woman, being a first generation Canadian, being “first in the family” to complete post-secondary education, my socioeconomic status, and so on. Like everyone, I ask to be heard, seen, and understood as an individual with unique lived experiences – not be placed into any “Asian stereotypes”.

Amy: That we have incredibly diverse cultural backgrounds with rich history, deep values, and have often suffered oppression in silence.  The “model minority myth” is a very hurtful and limiting perspective.

Kara: I identify as multi-racial (my father is of European heritage, my mother is originally form the Philippines). My proximity to Whiteness has afforded me many benefits but hasn’t shielded me from anti-Asian racism. I am a person who feels things deeply, and is so much more than the stereotypes.

Stewart: What’s helpful for me is to seek to understand and then to be understood.  I often try to put myself in someone else’s shoes to see how they might see the world.  What stereotypes do they encounter?  If I could, I would ask that we all do that. I think we’d find that we (any group/ethnicity/dimension of diversity) are more than tropes we see in media.

Aiann: I’m constantly aware of my actions and how they could potentially represent others who identify as Asian in my community. I have a strong desire to always work harder, be kinder, be better and prove that I am just as deserving of opportunity and respect in this country. As someone who has experienced encounters with racism, I often feel the need to assimilate (and even disassociate from other Asians) in places where I am the visible minority. I want to be seen as a person first, and not as my race.

Some Canadians believe that anti-Asian racism is not something that happens in this country, let alone in Toronto, one of the world’s most multicultural cities. What would you say to these people?

Carmen: Anti-Asian discrimination is on the rise in our country. I am sharing the preliminary results of a two-year study by University of Toronto. The first survey conducted back in April 2020, and the second in early 2021. Oftentimes the underlying stereotypes make racialized attacks easy. These stereotypical images of East/Southeast Asians that we “never complain” and “we only follow rules” are easily to be blame for the virus during the pandemic. 

Clara: Anti-Asian racism is alive and thriving in this country. Oftentimes, it’s not the outwardly “racist” physical attacks and verbal harassment we see in recorded videos or news articles. It’s the daily micro-aggressions, often from well-meaning people, that wear down at your psychological wellbeing.

To share some personal examples:
– Being asked “Where are you from? No… but like where are you actually from?”
– As a child in the lunchroom, hearing from another non-East Asian child: “That’s smelly – what is that?!” about my home cooked lunch.
– When I pass by co-workers who say “Hi {insert name of another female East/Southeast Asian staff}”.
– When the cashier at a supermarket is friendly towards the White customers ahead in line, and then becomes quiet when I approach the check-out counter.
– Being told by a well-meaning White person that I look like their grandson’s girlfriend from Hong Kong, and that I should meet her.

I can remember every single Anti-Asian racist incident that has occurred in my life, because they made me feel both visible (like an outlier) and invisible (like a stereotype) at the same time. 

Amy: If you believe there is no anti-Asian racism, it means that you have had the privilege to not be affected by it.  Recognize this privilege and that it contributes to the silent suffering of many Asians in our local community.  Reach out to Asian families and friends, you will likely hear a very different narrative than what you expected.  We have a lot of work to do.

Kara: Since I was very young, I’ve seen first hand how differently people interact with my father (the respect, the familiarity, always giving him the benefit of the doubt), versus how they interact with my mother (dismissal, disrespect and at times outward contempt). Trust me, anti-Asian racism is real. Since the beginning of the pandemic I’ve been yelled at the grocery store, glared at repeatedly on public transit, and been spat at by someone in a passing car. It doesn’t always look like this, it can be as subtle as a shop owner being so friendly to the White women checking out in front of me and then silent and dismissive when it’s my turn. I have to be over-the-top kind and charismatic to get the same reaction – it’s exhausting.

Stewart: It’s overly idealistic to think that anti-Asian racism does not exist in Toronto or Canada.  If you’ve not encountered it or seen it up close, then you are either lucky or isolated from the reality of many Asian-Canadians.

If you attended the Anti-Asian hate safe space session on Thursday April 1, can you reflect on what it meant to have a session like that at the hospital?

Carmen: It was such a heartfelt session to be able to hear and share with many colleagues in a closed and safe space where we had similar past or present day stories, which have traumatized us as East/Southeast Asian identities. In that 1.5 hour, it provides a space for my fellow and I to learn from one another and be able to articulate coping strategies that make us feel protected and safe.

Clara: It was an incredibly profound experience to be in a room with so many accomplished colleagues who were sharing similar present-day and intergenerational racial traumas associated with their East/ South East Asian identity. I could feel the pain that each person was reliving with every experience of racism they were sharing – from being bullied on the school yard, to being told to “go back to China”, to being harassed on the street, to fearing for their personal safety, to being unfairly judged based on harmful stereotypes. What was most upsetting was hearing that my fellow East/South East Asian colleagues often felt disempowered to share these experiences, and as a result, they were internalized, manifesting as anxiety, stress, and sleepless nights. Having a safe space to share racial traumas and coping strategies with one another paved the road for collective healing and recovery. These protected, safe spaces are so important for staff wellbeing and mental health.

Amy: It has been incredibly meaningful.  I have been in this organization for almost 10 years, and this is the first time ever that we have brought the Asian community together.  And people shared vulnerable, hurtful, painful personal experiences that intimately affected our own lives and those of our family members.  Within this safe space it is clear that every one of us has experienced and struggled with anti-Asian racism in our life and at work.  It was a deeply bonding and validating experience.  It is also super intense and there is so much hope for future sessions so we can continue to foster this community at our hospital. 

Stewart: It was a real gift and I’m grateful to both the organizers and Holland Bloorview as a whole for creating an atmosphere where such an event is possible.  It was a time for many of us to share, heal, listen and process.  There were things from my childhood that I brought up in the session that I haven’t described to even some of my close friends or family.  It felt like a room of kindred spirits who truly understood what it means to experience anti-Asian racism. 

Aiann: While the stories shared at the session were sometimes difficult to take in, having a dedicated safe space meant so much to me as a hospital employee. It was an incredible feeling to see colleagues (who also identify as Asian) online with me. It’s been a while since I felt proud to be Asian and have a sense of belonging. While I understand the confusion behind the space being only open to Asian-identifying staff, the reality is that the world is still a traditionally white, cisgender male safe space. Carving out 1.5 hours just for Asian-identifying staff, meant we had a safe space to truly call our own and share our stories.

What role do you see non-Asian community members playing in anti-Asian racism work?

Amy: First, acknowledge the painful reality that there is anti-Asian racism in our communities.  Then do your part to learn about this, reflect on the role that you can play in this, and offer support and solidarity.  

Stewart: I think we can all work as allies to address racism of all types. We can all play a role in having difficult conversations about racism and saying something when encountering racist behaviour.  

Clara: Believe the stories of racism being shared by the East and South East Asian community. These stories represent only a fraction of what happens everyday. The majority of stories are underreported or never shared, which is saddening. Learn more about anti-Asian racism at http://www.covidracism.ca.

Is there anything else that you want to share?

Amy: I am also on my personal journey to learn about internalized racism, white adjacency, systemic social injustice and becoming aware of my privilege.  I am so grateful for the many people who have paved the road, led the way and built community.  This work cannot be done in isolation and we all have a part to play and can support each other through the journey.  This just might be the most important work that we can do for each other. 

Kara: I read a quote recently about how BIPOC [Black, Indigenous, People of Colour] folks only know each other through the lens of White supremacy and it really stuck with me. I want to acknowledge the anti-racism work that Black and Indigenous people have been doing for so long – there are so many who have led the way. I’m interrogating the ways that I’ve been complicit and identifying the ways I can be actively anti-racist.

What is giving you hope right now?

Amy: That we are talking about this, that Asian communities across North America are starting to speak up.  That our organization is committed to advancing health equity, and actively recognizing and grappling with our own internal health equity challenges.  I feel deeply grateful because even a few years ago I wasn’t sure how long it would take for us to get to this stage. 

Kara: This, and other opportunities to share. Finally feeling like people are ready to listen. Seeing that the community is using its voice to say “enough”.

Stewart: We are more socially aware as a society and that is a harbinger of hope. That, plus my kids, who are growing up to see a multi-cultural and diverse world where activism is the norm.  They and their generation will shape the next chapter for us all.

CEO blog: Resilient Leadership Reflections for International Women’s Day

Recently I was on a panel of women talking about resilient leadership during the pandemic. To prepare I reflected on what this idea of “resilience” has meant for me but (and this won’t surprise you if you know me) I also posed the question on my social media channels and got a tremendous response. Thank you to everyone who contributed great suggestions and helped me to think more deeply about the concept.

A couple of things before I get into it. 

  • I and others struggle with the word “resilience.” When I checked out the dictionary definition I was chagrined to find one of the antonyms is “vulnerable.” I don’t want any part of a leadership that doesn’t include vulnerability.
  • Amy Varley, nurse, advocate and co-host of the podcast “The Gritty Nurse” criticizes the word for the way it can be used as a term of blame. She prefers “grit” as the better word to suggest someone who combines dedication and perseverance.
  • Prof Adele Blackett, McGill Law Professor and Canada Research Chair, criticizes “resilient” as a word that focuses attention on the individual’s ability to withstand adversity rather than the need for institutional change and changes to structural inequality. 

I think both Ms. Varley and Prof. Blackett are right. At the same time, I don’t know if there is a perfect word. Nor has there been one perfect leader or perfect leadership over the last year of the COVID-19 pandemic.

I’m going to share my experience of leading this year in terms of four ways I had to lead and three things I had to be.

How I’ve Been Trying to Lead

Caring is leadership from the heart. Our north star at Holland Bloorview Kids Rehabilitation Hospital has been compassion toward the children we serve and their families: how to provide the best and most accessible care, services and information. It also has been about empathy towards our team including sourcing mental wellness tools, being flexible, being present and creating opportunities for gratitude and thanks. According to recently published Canadian data on mental health in the workplace, women are 50% more likely to report “worry” as their primary emotion and 50% less likely to report “calm” when compared to men. Eight-five percent of the people who work at Holland Bloorview are women so these are numbers to pay attention to.

Vulnerability is leadership with emotion. It has meant I acknowledge problems even when I don’t have solutions, I talk about mistakes we’ve made, I share personal experiences and I try to create psychological safety and space for talking about anxiety, depression, worry, fatigue and sadness.

Candour is sharing information.  Not everyone is going to pay attention to everything so we’ve tried to give lots of options such as Zoom town halls, Friday all staff emails that include everything from COVID-19 modelling to recommendations for streaming and fitness apps, weekly COVID bulletins, weekly parent letters for inpatient families, “rounding for learning” throughout the hospital. If “information is power,” candour is democratizing access to that power so people can make the best possible decisions and understand the thinking behind organizational choices, even the ones we have needed to change because we got them wrong. 

Imperfection is keeping it real.  “Good enough is the new perfect.” “Let’s bathe in our imperfections.” “B- is the new A+.” ”Moving at the speed of covid.” These were all expressions we used to convey that the unique circumstances mean we have to be easier on ourselves than is our regular culture. It also acknowledged that we had to be decisive and willing to make decisions being honest and forthright about imperfections and course correct as needed.

Who I’ve Been Trying to Be

I’m learning to be an Anti-Racist. This police-involved deaths of many Black men and women including George Floyd; the deaths of Regis Korchinski-Paquet and Joyce Echaquan; Black Lives Matter protests at home and abroad; long-known data that demonstrates that racism and discrimination is a top contributor to burnout among healthcare workers; the words shared with me by BIPOC members of our team. These all contributed to our hospital understanding that it had to act with greater urgency and seriousness to fight racism, discrimination and ableism. Because of my many unearned privileges (e.g. whiteness, my gender-identity, etc.) I have had a choice that others, i.e. the choice of whether to make these injustices a present and prioritized part of my existence and of who I am as a leader. 

I am and need to be an Optimist! No, I am not loving the pandemic. I don’t expect people to be experiencing every day as sunshine and light in the face of true tragedy and adversity. But I am my team’s cheerleader in chief! Whether that is continuing to nurture homegrown innovation and celebrate it when I see it, reminding people of the good in our everyday work, identifying moments of gratitude, laughing and being silly or celebrating all those pandemic puppies and babies elbowing their ways into Zoom, I think leaders need to set the tone and that tone has got to include room for joy. 

I am and will continue to be Grateful. I’m grateful to have work I love, get paid well for and can do in-person. I know the story of COVID-19 for many around the globe doesn’t include any of those things. As a leader I’m grateful for a compassionate and outstanding team as well as colleagues outside my hospital who I’m fond of and can count on. As a mom, daughter and wife I am so grateful for the safety and good health of my parents, kids and husband while acknowledging the losses experienced this year among my extended family. I am so grateful for science that has brought us the vaccine which is the light at the end of the tunnel for this pandemic!

This International Women’s Day I’m particularly grateful for

  • the women who represent the majority of unpaid caregivers,
  • the women and especially racialized women who represent the majority of paid caregivers of our most vulnerable
  • the women advocates for justice during the pandemic
  • the women of science who’ve stepped up to crunch numbers and whose research continues to change lives
  • the women who represent the majority of teachers
  • the BIPOC women who are teaching and leading while they bear the burden of injustice

And finally I’m grateful for the chance to celebrate the women throughout history who have paved the way for me, my children, you and yours to achieve greatness in big and small ways.

Happy International Women’s Day!        

Julia

@Hanigsberg

Black History Month: Celebrating and Learning from the Past to Inform our Future

Aman Sium, Co-Chair Holland Bloorview IDEA Task Force, Director Client and Family Integrated Care & Julia Hanigsberg, President & CEO Holland Bloorview Kids Rehabilitation Hospital

In the process of writing this blog, we took the time to hold important conversations between each other, and with other Black and non-Black staff. Our conversations surfaced important and also difficult questions that deserve attention when reflecting on what Black History Month means in 2021. We asked ourselves, what stories, questions and work do we have most responsibility to shed light on? How do we balance the rich history of Black achievement, excellence and resilience in health care with the parallel histories of anti-Black racism and medical violence perpetuated by the same health systems? Among our many recognitions is that no single blog post, including this one, can do justice to these complex questions. Just as no single month, including this one, is enough by itself to center the voices and experiences of our Black colleagues, volunteers, students and trainees, clients and families, and broader community members. Our goal should be to center Black history and contemporary issues in far more routine and daily ways.

Black History Month has been officially recognized in Canada since 1995, when the Honourable Jean Augustine, a history maker herself as the first Black female Parliamentarian in Canada, introduced a motion in the House of Commons. According to the Government of Canada’s web site: “During Black History Month, people in Canada celebrate the many achievements and contributions of Black Canadians and their communities who, throughout history, have done so much to make Canada the culturally diverse, compassionate, and prosperous nation it is today.” There are no shortage of times we think and write about the challenges faced by Black-identified Canadians. Here at Holland Bloorview eight months have passed since we made our statement against anti-Black racism in the wake of the murder of George Floyd in the U.S., followed by the police-involved death of Regis Korchinski-Paquet here in Toronto two days later. The unprecedented outpouring of hurt and anger captured by Black Lives Matter protests across the world was felt deeply by many of us.

It is important that we balance between the acknowledgement of the wealth of achievement and celebration in Black history and the context of medical violence, exploitation and experimentation that persists today. As colleagues who work in a children’s hospital and academic health sciences centre, we have an obligation to become familiar with prominent examples of anti-Black racism in medicine and health research, including the Tuskegee Experiments and the research exploitation of Henrietta Lacks. We also have the obligation to amplify the voices and achievements of the Black health professionals, activists and advocates who continue to blaze critical trails in the field.

Dr. Ivan Joseph, award-winning performance coach, educator and mentor, has issued a challenge for Black History Month 2021: to learn about Black historical figures, to share untold stories and silenced voices. In the spirit of that challenge, we celebrate three Black firsts in healthcare:

  • Dr. Alexander Thomas Augusta was American born and Canadian educated. He was Canada’s first Black physician. He was the first Black person appointed to an American medical college (Howard University). He received honorary degrees in 1869 and 1871 from Howard in recognition of his contributions. Learn more: en.wikipedia.org/wiki/Alexander…
  • Dr. Anderson Ruffin Abbott was Canada’s first Black Canadian-born doctor admitted to the College of Physicians and Surgeons in 1871. Educated in Toronto he was an advocate for education fighting against racially segregated schools as well as a practicing physician. Learn more: en.wikipedia.org/wiki/Anderson_…
  • Born in Toronto, Bernice Redmon was Canada’s first Black nurse. She was educated in the United States having been denied entry to Canadian nursing schools. She joined the Nova Scotia Department of Public Health in 1945.  Learn more: https://www.ona.org/news-posts/black-history-month/
Dr. Alexander Thomas Agusta
Dr. Anderson Ruffin Abbott

Bernice Redmon

These past achievements and examples of courage in the face of what must have seemed like insurmountable obstacles, should fill us with hope and optimism for a future of change and progress at Holland Bloorview and beyond our walls.

Our IDEA Task Force, associated working groups, IDEA core team and executive and staff leads on our IDEA work plan (close to 60 people and growing!) are all deeply committed to achieving our objectives. However, most things are taking longer than we had hoped. In June 2020 when we issued our statement on anti-Black racism. We started by acknowledging the existence of anti-Black racism at Holland Bloorview and across the health system, and committed to a long road of collective learning and action ahead. We knew this journey would pose many challenges, and we were right:

This work will not happen overnight and we all must enter this journey with eyes, hearts and minds open to change, progress and a commitment to doing the work necessary to confront and end racism within Holland Bloorview and beyond our walls. We understand and embrace that, as a hospital community, our anti-racist journey will continue to be filled with necessary discomforts and tensions as our community un-learns and re-learns new ways of being.

For Black History Month we are buoyed by what we can learn about the past to give us confidence about progress in our anti-racism journey…together.

We wish to thank Dr. Sharon Smile, Developmental Paediatrician at Holland Bloorview Kids Rehabilitation Hospital, Clinical Study Investigator in the Bloorview Research Institute, Assistant Professor in the Department of Paediatrics at the University of Toronto and equity diversity and inclusion champion for the Division of Developmental Paediatrics for comments on an earlier version of this post.

CEO blog: Meet Irene Andress, Holland Bloorview’s new vice president, programs and services and chief nursing executive

Irene Andress, vice president, programs and services and chief nursing executive

In October, we welcomed Irene Andress as our new vice-president, programs and services and chief nursing executive, with 35 years of healthcare experience, the last 30 of which were spent at Michael Garron Hospital.

For this month’s blog, I invited Irene to write a guest post and share her reflections on her early journey as part of the Holland Bloorview community.

Enjoy!

Julia

@Hanigsberg

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Well I cannot believe it but it is day 41 of my journey at Holland Bloorview Kids Rehabilitation Hospital (Holland Bloorview). Though I have been here for just over a month, it feels like I’ve been here forever! It has been such a fantastic transition and that I know is not an accident. Let me tell you why.

Some will know that in my interview process, I was asked to complete a 30-60-90 day plan to demonstrate how I would navigate my onboarding time. This caused me to look at and reflect very deeply on all of the important parts of Holland Bloorview, from the care, the research, the education, to the governance and the philanthropy in addition to all the programs, services, projects and most importantly the strategic priorities and values that make this place so special.

On October 14, my official learning began. My love has always been in practice and leadership and in creating the context for the best care and service. So it is not surprising that it has been an easy transition for me. As I became familiar with the fabric of the hospital, I quickly realized that my personal values align fully with those already established: courage/resilience, compassion, excellence, equity and innovation.

Courage and resilience

Balancing a full-time career and raising three children (all under the age of two at one point) made my husband and I comfortable with “being out of control.” That was not comfortable most of the time but it taught me to prioritize, not take myself too seriously, and to be organized and outcomes oriented. I have learned that it is important to speak the truth, to be honest and transparent, and that this is an art that needs a lot of practice.

I love to ask “why” or as the QI exercise would describe it as “using the five why’s” as this is the path to true understanding. Of course, this always works better when one is well versed in emotional intelligence as the question “why” can spark all kinds of emotions. What I’ve learned is to tell people why I am asking the question or be clear about my intention and not assuming (we know what that can mean).

Excellence and compassion

Just this week I asked a lot of “why” questions while shadowing Sally, one of the excellent nurses on our Complex Continuing Care unit.

In the two hours I spent with Sally and two nursing students, I observed both excellence and compassion. Sally moved expertly between caring for her client, educating and mentoring her students, explaining the “why’s” to the Chief Nurse AND all the while communicating with care and compassion and role modelling “expert” care. The nursing students (one from McMaster and one from the University of Toronto) were outstanding – both able to execute on very specialized skills while never losing sight of the fact that they were caring for a human being with feelings, emotions, need for security and safety. I thank Sally and the students for the privilege of sharing in the bedside care and enabling me to learn their unique set of skills from the best.

Irene shadowing complex continue care nurse, Sally (centre right) while educating two nursing students.

Equity and innovation

I have learned to appreciate that no one person is the same or created equal and the more diverse our teams and environments, the stronger we will be to create innovation and to create a world of possibility for kids and youth with disabilities. This will be the “no boundaries” future that is the hallmark of Holland Bloorview’s strategic vision. There is a lot to learn and I am committed to being part of that future of possibility.  Our work with clients and families and our commitment to inclusion, diversity, equity and accessibility will lead us to be system leaders in creating the best place to give and receive care and service.

My commitment

I am committed to be grateful for the privilege to be invited into the Holland Bloorview community. I knew this place was special when I visited the Tim Horton’s on one of my first days. I ordered my usual coffee and was so impressed when Beverley (one of the food services employees) remembered my coffee order and had it ready even before I paid for it. What was more impressive was the next morning, when I saw my coffee waiting for me again, but before I could provide payment, Beverly waved off my money and acknowledged that she had given me the wrong coffee the morning before. I was flabbergasted. How could it be that someone would know that much about their customer? This is just one example of the magic – the “secret sauce” that makes Holland Bloorview so special.

This magic happens with hard work and a commitment to the values promoted across the culture. I am so grateful  for the friendliness and the warmth of everyone that I meet. My commitment is to never forget these moments, to remain grateful and to carry that warmth into everything that I do.

30-60-90

I’m about half way through my onboarding and I have a lot more learning to do. We have a big year ahead of us, with ambitious plans, including (but not limited to):

  • Resolution of the COVID-19 pandemic and getting back to a new post-virus reality;
  • Preparation for Accreditation 2021. We all know the effort that it takes to show the accreditors how great we are;
  • Embracing Caring Safely and all of the evidence based practices to ensure quality, safety and a high reliability organization; and
  • Enhancing the strength-based and solution-focused philosophy and practice integration work.

My job will be to maintain focus, to synergize and simplify our work together.

Irene (centre) with members of Holland Bloorview’s pharmacy team. During Canadian Patient Safety Week, Irene awarded the group with a prize for a virtual care safety initiative.

Thank YOU to Julia, Diane, Golda and the senior management team for welcoming me and teaching me. Thanks to my program leads who have been patient (even when I ask crazy questions!). And special thanks to Claire Whyte – my life saver and partner. She makes my days simple no matter the circumstances.

So I will leave you with the words of Florence Nightingale …

So never lose an opportunity of urging a practical beginning, however small, for it is wonderful how often in such matters the mustard-seed germinates and roots itself.

Let us all be the fertile soil for growth, new beginning and endless possibilities.

Irene

CEO blog: Children with disabilities need to be seen and heard, too

For this month’s blog, I’m sharing with you a post I wrote in October for National Child Day, a day recognized and celebrated in Canada on November 20.

This year’s theme, Children should be seen and heard, resonates strongly with our community, as at Holland Bloorview we continuously work to ensure children living with disabilities and complex medical needs are part of the conversation.

As a recognized leader in family-centered care, we are committed to co-creating with children, youth, families and alumni to make sure that everything we do is informed by the kids we provide care to and their families. As the recipients of our care, they are in the best position to tell us what we do right, where we can improve and where we may want to shift our focus to be even better. Our commitment is deeply entrenched across the organization and embedded in our No Boundaries strategic plan.

In addition to embedding the client and family voice into everything we do, we also use our position of influence to uplift the voices of kids and youth living with disability.

Perhaps the best example of this is our Dear Everybody campaign, a social advocacy campaign that originally launched in 2017, which was built in close collaboration with our clients and families. In the first year, youth, our youth, wrote an open letter to “Everybody,” with the objective to educate and de-stigmatize disabilities. The letter, which includes 50+ lines of gripping statements, have since been printed on hundreds of t-shirts, postcards and (new in 2020) masks, and continue to be central to the campaign through its evolution year over year.

A few read:

“Dear Everybody, not everyone with a disability looks like they have a disability”

“Dear Everybody, Just because someone doesn’t do something they way most people do it, doesn’t mean they can’t do it.”

“Whispering is rarely as discreet as you think it is.”

Now in its fourth year, the campaign focuses increasing the representation of people living with disabilities in the media, as they are rarely seen, and for our kids, this lack of representation tells them that their stories aren’t important, that their voices do not matter, and that they aren’t a part of the conversation. Things neither which are true or should be felt by any child.

On November 20, I encourage you all to join me in recognizing National Child Day by advocating for and elevating the voices of children across our country.

Read my National Child Day blog

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Julia

@Hanigsberg

CEO blog: Five lessons from wave one of the COVID-19 pandemic

When I turned 50, my family took me on a wonderful winter trip to Hawaii. As the armchair sports fan that I am, I became obsessed with watching surfing from the cliffs along the coast. Each wave represented an enormous challenge and each inevitably was different from the last. What set apart the good from the great was what a surfer learned from the first wave to take into the next one and the one after that. You can tell where this is going…

The first wave of the COVID-19 pandemic blindsided us. Debate preparedness but the bottom line is it crashed into us and we were knocked off our boards and hit the sand hard. Wave two has come at us faster than hoped. But we know a lot more about the treatment for and the epidemiology of this novel coronavirus and we also know a lot more about leadership in the era of COVID-19.

  1. Nothing matters more than honesty and clarity

Transparency and realness has triumphed in COVID-19 communication. British Columbia’s provincial health officer Dr. Bonnie Henry and Ontario’s Premier Doug Ford might not have been two names we would have mentioned in the same breath a year ago, but each has taught us things about how to talk about COVID-19.

In Dr. Henry’s case, she has modeled courage, calm and kindness – telling British Columbians what they needed to hear, even if it wasn’t what they wanted to hear (and she has both the death threats and the Fluevogs named after her to prove it).

Premier Ford has stepped up his game and among other things has been Ontario’s “dad-in-chief,” calling people having large gatherings “a few fries short of a happy meal” and exhorting young people, “I don’t care if it’s those doobies, joints, whatever you want to call them… just don’t share them, simple. And wear a face covering.”

For my part, virtual family leader town halls, weekly Friday all-staff emails (that also go to my Board of Trustees) and bi-weekly live all-staff town halls over Zoom have given me the chance to connect with more members of the team than ever, especially with staff who work nights, off-site or who are working from home. Answering questions live during town halls on my own or with the help from expert guests gives me the opportunity to tell the story of Holland Bloorview during the pandemic. This includes sharing what I know and (as importantly) what I don’t know, with some suggestions on recipes, books, streaming, podcasts and workouts thrown in as well as candour about my own struggles as a person, a hospital leader and a mom. And as we have advanced our IDEA (inclusion, diversity, equity and accessibility) journey, anti-oppression and anti-racism have been an important part of that story along the way.

2. Good enough is the new perfect

In March, when data and government directives were flying at us and we were making decisions at the speed of covid, I started talking about how we needed to “bathe in our imperfection.” We were trying to get everything right (we are a hospital that scored 100% in our last two Accreditation Canada surveys, after all). I needed to give myself, and every member of our team, the permission to get some things wrong. We were going to judge ourselves on the speed by which we corrected our mistakes and the humility with which we admitted them. For example, when we heard from staff working at the point of care, especially our nurses, that imposing new protocols and directives on Fridays left weekend staff scrambling, we committed to a 48-hour notice rule for implementation of changes.

3. “Covinnovation” is a thing

It’s been argued that it’s in the tension of holding two conflicting ideas in our minds at the same time that new and better ideas are born. This is the heart of COVID-19 innovation. Emergency orders requiring we shut down in-person services and keep as many people out of our building significantly derailed our pre-COVID-19 strategy of increasing access to our services and building a nimble and agile team.

But in April and May, our clinicians provided more virtual care appointments to children than they had in the previous 10 months combined. Moreover, where evidence-informed approaches didn’t exist (e.g. autism diagnostic assessment in a virtual environment) teams had to come together across multiple academic centres to rapidly develop new strategies. When families told us they were struggling financially, we partnered with the Holland Bloorview Foundation to double the size of the Family Support Fund to make it the largest hospital-based financial support fund in Canada at a time when fundraising was going to be harder than at any time since the 2008 financial crisis.

4. We are in this together

In January 2020, we launched a new people strategy, Thrive Together. Who would have imagined how much our commitment to that strategy would be tested in the months since? We have had to dramatically accelerate work to support employee mental health and resilience and have revealed our need to learn and do more to address the impact of systemic racism and oppression on our people. Moving Schwartz Rounds to Zoom has been incredible as a way to dig deep, as has launching our IDEA Task Force. Working from home upended our technology plans and redeployment of staff from ambulatory services to inpatient units was hard, but ultimately brought teams together and put us on a path to better care and fewer siloes.

Probably the most important thing I do in every web cast or Friday all-staff email is thank every single member of our team. Among the many things the pandemic has revealed is how our values and our mission live in every member of our team even when we struggle with fear, anxiety, fatigue, anger and frustration. I can’t ever say thank you enough.

5. COVID-19 is an a**h***

This thing isn’t fair and it isn’t nice. Age. Poverty. Race. Disability. Under-housing. Being Indigenous. These are all factors contributing to being harder hit by this pandemic. At Holland Bloorview, we have seen firsthand the impact on the children we serve and their families.

In the first wave, we learned that our elders were vulnerable – in the hardest of ways. Will we take the lesson from wave one and beyond that children are being permanently harmed by COVID-19 even though they are neither the most infected nor the most hospitalized? Mental health. Developmental milestones. Permanent effects of surgeries postponed and therapy not received.

We should regret the mistakes we made in wave one. We should be ashamed if we don’t learn from them. The lasting lesson of this pandemic has got to be:  our parents and grandparents and our kids must not be left behind.

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Julia

@Hanigsberg

CEO blog: Dear Everybody demands meaningful change

We live in a world where representation matters, perhaps more than ever before. Goodness knows in the time of COVID-19, we are even more attached to our screens, our streaming services, our 24-hour news channels, and our books and magazines.

We look to media to see what and who matters. Have you heard the slogan – if you can see it you can be it?

For people with disabilities, a lack of visibility has become the norm. They are simply used to their erasure. Put it another way, it’s a (welcome) surprise when disabilities, visible and invisible, are in the media we consume all the time.

With over 120 years of experience in caring for children with disabilities, Holland Bloorview Kids Rehabilitation Hospital recognizes the importance of inclusion. We take seriously the part we play in driving social justice for kids and youth with disabilities 24/7/365. The Dear Everybody campaign is a fundamental aspect of this work.

What is Dear Everybody?

Dear Everybody is Holland Bloorview’s social advocacy campaign that challenges disability stigma, particularly for kids and youth. We know that despite amazing achievements of kids and youth within our walls, without a more just and inclusive world there are still too many limits for young people with disabilities. That’s why we are passionate about justice and creating greater opportunities for people with disabilities of all ages.

Today, we are launching year four of the campaign. For the second year in a row we are shining a light on the lack of representation of people living with disabilities in the media. 

Slowly but surely, kids using wheelchairs and walkers have been photographed for big brands like Target and Tommy Hilfiger. Gerber made front page news when it announced its first “Gerber baby” with Down syndrome. On our television screens, it is becoming more common to see disability representation in programming for adults and kids alike—popular shows as diverse as Atypical, This is Us, Grey’s Anatomy, Breaking Bad, The Politician, Never Have I Ever and kid and family fave Sesame Street!

But there is still work to be done. Characters with disabilities are often played by actors who do not live with the disability they are portraying. Among the top 10 network TV shows in 2018, only 12% of characters with disabilities were portrayed by actors with the same diagnoses in real life, creating unacceptable barriers for people living with disabilities trying to make it in the entertainment industry.

Show your support by signing the Dear Everybody Agreement

Last year, the Dear Everybody campaign was successful in building tremendous momentum for including disability in the picture. More than 7,000 of you signed the Dear Everybody Agreement, showing your support for a more inclusive media landscape. Almost 20 brands and 21 suppliers (including casting and creative agencies) signed the agreement, promising authentic representation for people with disabilities when putting together their campaigns.

This work continues in Dear Everybody year four.

Holland Bloorview clients have again shared their stories, which make up the “because” statements that form the backbone of this year’s campaign. These include, “Because you don’t have a favourite actor with a disability”, “Because fashion without disability is just not a good look” and “Because when disability is left out, we all miss out”.

We are proud to give these voices a platform, and we believe these personal reflections have the power to truly move the industry (and people like you) to join the cause.

Here’s what you can do to support this year’s campaign:

  1. Sign the Dear Everybody Agreement and join over 7,000 people across the country who want to see change in our media landscape.
  2. Visit DearEverybody.ca for great information on the ways in which people with disabilities are excluded in the media. Share the stories of our clients to highlight why this work matters so much.
  3. Share our posts and stories across your social media channels to amplify the message and encourage your network to do the same. Use our social media tool kit to help craft your own messages too!
  4. **NEW FOR 2020!** Use #DearEverybody stickers on Instagram to call out images that lack disability representation, or celebrate images that include disability in the picture.
  5. Encourage your favourite brands and advertisers to sign the #DearEverybody Agreement using the sample email found in the tool kit.
  6. Start conversations with Dear Everybody merchandise! Dear Everybody t-shirts and water bottles can spark the kind of dialogue about disability awareness we’re aiming for through the campaign. You can purchase them directly from our online store and have them delivered to your front door. This year, we have added cloth masks to our collection of goods!
  7. Connect organizations you are involved with to our Dear Everybody Outreach program. Our outreach program connects schools, workplaces and community organizations to youth with visible and invisible disabilities to engage in a dialogue about disability awareness and the place of disability in equity, diversity and inclusion. The program is available in both in-person or virtual settings. If you’d like to learn more or connect an organization with whom you are involved, email DearEverybody@hollandbloorview.ca.

Twenty-two per cent of us live with a disability—isn’t it high time we all see ourselves in the picture?

_______

Julia

@Hanigsberg

CEO blog: Introducing our IDEA Task Force co-chairs

One of the things I love to do is showcase interesting people in my blog. In this post, I’m pleased to introduce the co-chairs of Holland Bloorview’s new Inclusion, Diversity, Equity and Accessibility (IDEA) Task Force, Meenu Sikand and Aman Sium. In their day jobs, Meenu is the executive lead for equity, diversity and inclusion and Aman is the director of client and family integrated care. I asked them some questions, both light and heavy, focussed on what makes them tick and why they are passionate about the work of anti-racism and making the world a more just place for people with disabilities.

Meenu Sikand, Executive Lead, Equity, Diversity and Inclusion and Aman Sium, Director, Client and Family Integrated Care.

What have you been reading lately? What’s on your nightstand (or kindle!)?

Meenu: Disability Visibility: First-Person Stories from the Twenty-First Century by Alice Wong

Aman: First of all, I’m not much of an “e-reader”. I’m a bit of a snob when it comes to preferring physical books over kindle or audiobooks. I have a big book collection that has turned into a hobby (hoarding?). My father was a high school teacher who raised me to appreciate the smell of weathered pages in an old book, the scribbled notes left by generations of previous owners and the sense of accomplishment you feel after turning that last page. I just finished my very first audiobook, the Autobiography of Malcom X by Alex Haley and Malcom X. I really enjoyed the experience. Before that I read From #BlackLivesMatter to Black Liberation by Dr. Keeanga-Yamahtta Taylor. Though very different books – one an autobiography published 55 years ago, and the other a seminal contemporary text on the state of Black liberation – I found they complemented each other really nicely, and are helping me appreciate the historical undercurrents for anti-Black violence and resistance in the current moment.

Do you use any social media? Why or why not?

Aman: I used to use Facebook, Twitter and Instagram. But I found juggling all three platforms started to feel like a full-time job. A few years ago, due to limited time and energy, I decided to scale back to just one platform. These days you can find me on Twitter (@amansium) tweeting about client and family-centered care and partnership, health equity and racial justice. Aside from being a great source of tailored news and networking, there’s something really fun about Twitter and the challenge of squeezing complex thoughts and issues into 280 characters. I’m always impressed when people can grab and hold the attention of others with just a few tweets.

Meenu: Yes! Using social media helps me to connect with other like-minded people and amplify my messages to others interested in social justice issues. You can follow me on Twitter (@msikanda4a) and on Instagram (@meenusikand). I’m on LinkedIn and Facebook, too.

What do you think your best quality is?

Meenu: Eternal optimism, being hardworking, my passion (pick one!)

Aman: I’m not sure if I’ve ever thought of myself as having a “best quality”. If I had to answer I’d say my diplomacy and mediation skills. Growing up as the youngest in a household full of assertive personalities, tact and diplomacy were helpful tools in influencing people and promoting my ideas. I’ve always been a carrot over stick person, and over the years I’ve learned to sharpen and wield my “carrot” in very influential ways.

What’s your main fault?

Meenu: Eternal optimism.   

Aman: Like many people, no matter what level of success or love I may experience, I still struggle with the voice of an inner saboteur who tries to convince me that I’m undeserving. I think this is something that everyone struggles with to some degree. I’d characterize it less as a fault and more as our journey towards identity-pride and self-affirmation. I think this is something that also disproportionally impacts Indigenous, racialized, disabled, women, trans, queer, working class folks, and those living at the intersections. Living within what bell hooks calls white supremacist capitalist patriarchy means we are over-exposed to a very dominant, narrow image of both beauty and excellence. The more we deviate from that image, we are made to feel more flawed and undeserving of love, praise and success. So the issue runs very deep.

If you hadn’t ended up doing what you do, what would you be?

Meenu: Running a waterfront self- serve coffee shop inside a bookstore.

Aman: First baseman for the Toronto Blue Jays (I took the liberty of weaving some fantasy into my answer).

What is your greatest fear?

Aman: Easy. Coming across a shark while treading water in the middle of the ocean (don’t ask me how I got there). That’s all. Just sharks. To help get over my fear I visited Ripley’s Aquarium when it opened in Toronto to learn more about them, and to try demystify them a bit. It only made me more afraid. So yeah, still sharks.

Meenu: Not being authentic and true to my values.

What is your most treasured possession?

Meenu: My faith.

Aman: The full 1992 Upper Deck (card) Toronto Blue Jays World Series team, autographed. I was a baseball fanatic as a kid. I used to get to games hours early to watch batting practice, talk to the players and beg for autographs. I’d spend much of the actual game imagining myself playing first base for the Jays one day. Between ages eight and 12 I got really serious about collecting baseball cards. My uncle worked in the SkyDome’s underground parking lot and would see the players coming before games. So I gave him my card collection and asked if he could get them signed. One of the happiest days of my life was when he handed them back to me signed and protected in hard covers.

What do you consider your greatest achievement?

Meenu: It has yet to come.

Aman: Definitely raising my two-year-old daughter. My father once told me that parenthood/guardianship is the quest to raise better humans than ourselves. The older I get the more I subscribe to this idea. The past two years have been joyous, tragic, hopeful, challenging and everything in between. I wasn’t raised within a normative or fully healthy nuclear family and was a bit nervous about becoming a parent. The comfort and knowledge I’ve been able to cultivate over the past two years, and watching her grow into herself with each day, is a very cool achievement that I share with her. 

What do you like the most about working at Holland Bloorview?

Both: Kids and families!

Meenu: Our focus on engagement with kids and families who we serve using a whole-person approach.

Aman: I had very little understanding of, or contact with, people living with disability prior to joining Holland Bloorview. The past three years have provided a steep learning curve that I’m grateful for. I’ve met and learned from so many kids, youth and families around what it means to live with disability, and what disability pride and disability justice should look like. The direct contact with families, the laughter, the powerful sense of community, the advocacy, and the mutual learning are what I like the most about working at Holland Bloorview.

We are having a historic discussion focusing on anti-racism, Black Lives Matter and white supremacy. None of these topics are new to you. Is there anything in the current moment that makes you optimistic? Why or why not?

Meenu: For the first time, since my advocacy career began 30 years ago, I have seen unity from across the globe to denounce racism. It is the persistent coverage of these issues fueled by social media advocacy, supported by corporations and individuals alike, that makes me optimistic. At the same time, I am surprised to learn about important historical events and past resistance efforts that were documented and hidden away.  Through demonstrations, pledges and slogans, young people are driving this movement to change behaviours and definitions of acceptance. I am extremely proud of the collective and collaborative work happening to address anti-racism vertically and horizontally.  

Aman: I think two things separate the current moment from other movements for racial justice over the past 40 years. First, the base of support is larger and more informed of the basics. Never before have racial justice-seeking concepts and vocabulary been so mainstream. The #BlackLivesMatter and #DefundThePolice movements are great examples of this. Second, social media has evolved to become a critical tool to document and amplify experiences of anti-Black and anti-Indigenous violence at the hands of police, educators, employers, child protection workers and other state actors in important ways. Social media is not the great equalizer that many seem to think it is. It has deepened the surveillance, coercion and control of already oppressed communities. But at the same time it has become a catalyst for change, whether amplifying the murder of George Floyd at the hands of racist police, or being used to organize resistant protests and rebellions. I think these two factors have contributed to the hopefulness and confidence that defines today’s social movements for racial justice. 

Do you have a memory of the first time you faced discrimination?

Meenu: There have been too many instances to count when I was discriminated against for being different based on my gender, disability, colour, beliefs or accent. Earlier in my life, I was unfamiliar with this term and did not relate my experiences to discrimination. Here’s one example: after acquiring a spinal cord injury and being admitted for rehabilitation, staff at the hospital were surprised that I spoke English well. They were also surprised when I asked to include pursuit of a career and financial self-sufficiency as part of my rehab goals. My desire to live with my family as an adult was discouraged using a western definition of independent living. All these things were discriminatory attitudes against me as an immigrant, as a woman of colour, as a person with a disability, but I’m not sure I would have named it that way at that time.

You have taken on the role of co-chair of Holland Bloorview’s IDEA Task Force. Why is this something you are putting your energies behind?

Aman: That’s a great question. I believe all healthcare delivery models have a responsibility to help heal the whole person. World-class medical care is one thing, but if we’re not viewing social and environmental factors with an equity lens as and part of how we design care, then even world-class medical care will not bridge disparities around healthcare access, experiences of care, and clinical outcomes. For over 30 years, evidence has told us that the social determinants of health (e.g., systemic racism, sexism, class oppression, gender discrimination, etc.) are the greatest indicators of health outcomes. This is also true in our setting in pediatric rehabilitation. I took on this role to both challenge and coach Holland Bloorview to be the best version of itself in this regard. We all know there is more we can do to address deeply rooted social and economic injustices and their impact on healthcare. The moment is right for us to both challenge and lead the system in this area.

Meenu: This role will allow me to create an inclusive framework and model that will help to critically analyze the systems of oppression for BIPOC-D [Black, Indigenous, People of Colour, and Disability] populations. Co-chairing the task force will give me the opportunity to embark on the journey of gathering the missing data on race, disability and intersectionality by engaging Holland Bloorview staff at all levels and developing a sustainable action plan to address the findings. I always have dreamt of creating a just and barrier-free society where no one is excluded or left behind because of their colour, gender or abilities.

Thank you, Aman and Meenu, for introducing yourself in this fun and deep way to our community. The IDEA Task Force is a critical component of Holland Bloorview’s anti-racism action plan.

Holland Bloorview is accepting applications for membership to the IDEA Task Force until August 24. Information about the task force, including how to apply is available on HB Connect (available to Holland Bloorview employees only).