From 'liability' to leader: Why lived expertise matters to our work for social change

Everyone has a career origin story, a foundation of experiences upon which their current employment rests, the reason why they do what they do.

Today, I am known as an inclusion and belonging specialist. My voice is heard in many spaces, my perspective sought after, and my storytelling skills acclaimed.

I’ve worked with all levels of government, post-secondary institutions, non-profits as well as corporate and community organizations. I’ve been invited to speak on panels and at conferences. I have a full-time job and also run my own business; both focus on supporting inclusion and the value of living experts like me.

However, feeling seen, heard, and valued hasn’t always been my story.

For years, I carried a deep-rooted desire to belong and contribute, as we all do. For some of us, it’s not that easily achieved.

Growing up, experiencing multiple forms of prejudice (some for which no name yet existed), was just part of my daily reality, shaping how I moved through the world, how the world moved around me, and who decided to move toward or away from me.

A life of layered trauma

I immigrated to Canada from Jamaica at the age of 3 and spent most of my childhood in the neighbourhood of Chester Le Blvd in Scarborough. At 13, I made the unthinkable decision to leave home after years of mental, physical, and sexual abuse, and entered the child welfare system. I lived in several foster and group homes across the city from York to Etobicoke, to East York, to Parkdale.

At 14, I was diagnosed with retinitis pigmentosa – a rare, untreatable condition that meant I would slowly but continuously lose my eyesight. I was devastated. It was even more devastating because I was alone when I received the news – both my foster parents and social worker had refused to accompany me to the appointment. I continued to encounter the very same types of neglect in care that I had tried to escape.

At 16, a further diagnosis of polycystic ovary syndrome (PCOS) led me to grow a beard. The condition involves an imbalance of hormones, particularly testosterone. It can cause hirsutism, the growth of excessive hair on a woman’s face and body. With this, I was perceived to be transgendered and my social precarity increased. Being aggressively taunted, and even threatened, became norms of my adulthood as the condition progressed. It was impossible in any given moment to identify the main source of discrimination I faced, whether it was racism, homophobia, ableism, something else, or any combination of them.

Falling through the cracks in public education

At 17, I moved out on my own, working part-time at a community living centre and going to high school at the same time. Although a psychological assessment in grade 8 identified me to be at a grade 12 level academically, the school was not made aware of my disability, and I never received any accommodations or support. Like many youth in care, I was labelled delinquent. Some educators even encouraged me to drop out.

Others saw through my tough exterior and nurtured my potential. My grade 10 history and French teachers, in particular, demanded excellence from me. And when I saw what I could achieve, there was no turning back. I wanted more, but it was going to be a long road for me.

When you have a disability, it can take a long time to get educated, with all the hoops you have to jump through.

Although I graduated high school with grades above 90 per cent, I did not receive any information or support about scholarships or bursaries. Being overlooked went beyond being underestimated – without financial aid, I would not have been able to afford tuition and all the costs of going to school, in addition to daily living expenses. I managed to get an OSAP loan (which I still owe on today).

I was on my own, in many ways. Loneliness is one of the main hurdles that negatively impact young adults with child welfare involvement. I was fortunate that Thelma, a staff at my last group home, broke the rules. She kept in touch with me, helped me navigate predatory landlords, and hosted me for holiday dinners. Thelma was a lifeline – someone willing to do what I needed regardless of what the system dictated.

In my first few years of adulthood, I navigated single parenthood, homelessness, and gender-based violence. Like most of us forced to the margins, I hustled. I sacrificed. I made impossible choices. I used my creativity. I did without. I sought support from community organizations.

Still, I persisted. In 2003, I emerged, degree from York University in hand and determination lodged deep in my heart. I walked into job interview after interview with all the expectations of success that a 4.0 GPA provides. Each time, I was sorely disappointed. Every employer looked at me and saw “liability.” Not a force to be reckoned with. Not a potential leader. Not an innovator. Year after year, I faced a relentless tide of attitudinal barriers:

“Not the right fit.”

“Overqualified.”

“Wish you had a different disability.”

It was an unceasing fight to be recognized. After three years, with no hope of employment, welfare and public housing shored up my profound grief.

I got married and grew my family; however, there was no part of my life that ableism and discrimination didn’t touch. As a parent, it was very difficult to witness the oppression I faced grow to overshadow my children as well. To be confronted by strangers demanding to know if I was “allowed” to be out with the children alone, to hear my daughter being taunted that her mom “looked like a man,” to be stereotyped because of the Toronto Community Housing neighborhood we lived in.

Every day, everywhere, I found myself fighting for myself and for my whole family.

School became a place where I went to do battle. It was where I went to wage war, to assert our right to resources and to demand support. There was no trust, no love. I constantly felt like I had to prove our worth, that I had to defend our family makeup, and push back against the stereotypes of families with limited income.

At that time, I was at a really low point in my life, having been unemployed for about 10 years. There were barriers everywhere I turned.

And then the trajectory of my whole life changed.

A simple, powerful act lights the fire

Nancy was an elementary school principal, and I met her when I accepted a placement in a diagnostic kindergarten class for one of my children who had recently been diagnosed with autism and ADHD. She took me on a personal tour and described the school philosophy of being the heart of the community. She explained their commitment to supporting the whole student, including the entire family unit. I just knew this school was going to change my child’s life. I didn’t realize it would change my life, too.

As many principals do, Nancy invited me to the first school council meeting and to run for a position. I had been through this conversation with four other principals at different schools by this point. I explained, as I had to the others, that I had a visual impairment, that I could not travel unaided in dim or dark lighting, that my husband worked irregular hours and therefore could not support me. And since meetings were held in the evenings, I would not be able to attend or participate. I usually received a comment like “Oh, that’s too bad,” as they turned away to greet someone else.

This time was different. Nancy replied, “Then I’ll provide you with taxi chits to attend the meetings.” I was so taken aback by what she said that I exclaimed, “What did you just say?” When she repeated it, I told her that no one had ever offered to help me before. Not only did I take her up on her offer, at her encouragement, I put my name in and was elected chair of the school council. With Nancy’s continued support, I went on to simultaneously chair a regional council and an advisory committee at the board level.

My passion for community involvement and advocacy was lit.

Until I believed it myself

I met Stephanie at an education conference where I co-facilitated a session with Nancy. Stephanie worked for a child development centre and invited me to join Parent Advocacy Leaders, a peer support group to inform and empower low-income parents in systems navigation.

Over time, Stephanie advocated for more opportunities for me. She recommended me as a keynote speaker for the organization’s AGM, and then to lead one of their annual all-staff trainings. Her actions always surprised me. I would have never put myself forward in those ways. She fed me her belief in me until I believed it too. Each success boosted my own confidence, and my work built the organization’s awareness of how and why their relationships with their community matters.

Volunteerism and advocacy became the outlet for all my pent-up longings, fuelling new passions to be and to do. But I wanted to work, to help lift my family up economically. I knew I was hooked on justice work – that I’d do it for free – but I kept dreaming of getting paid. For people with disabilities, volunteering is the area where our labour is most welcomed. With my previous experiences, I didn’t hold much hope in traditional work and began participating in entrepreneurship programs, aiming to start my own business.

Meanwhile, Stephanie’s supervisor, Ruth, interviewed and hired me to take over their Book Nook program, which I had been volunteering for. It was a mini position – I worked one day a month for four and a half hours, but I led a team of people with and without disabilities and I had transitioned from a volunteer to an occasional paid facilitator to a staff member! I was grateful to have my foot in the door and well aware of my opportunity to lead as a Black, disabled woman. Earning the respect of my coworkers and my volunteer team was important to me. I had a lot to give, but I also had a lot to learn.

From “liability” to asset

As the global pandemic shut down the world, the Book Nook program closed, and Ruth deftly proposed that I lead monthly Lunch and Learns for staff on equity topics. I was promoted to Equity Coordinator, and my position grew to ten hours per month. Ruth led with intention, looking for and removing barriers, plus meeting with me regularly to discuss the best ways to support me in my work.  

At this point, my involvement in equity and justice initiatives stretched across many sectors, including housing, education, poverty reduction, child welfare, disability, and gender equity. I became a bridge between service providers and community members, shedding light on nuanced realities by sharing stories from my own intersectional experiences. I founded my own business, Focus On Ability, to redefine who gets to be seen as capable, credible, and critical to change. Over time, I gained a reputation as someone who speaks across silos, systems, and experiences with clarity and care.

Unexpectedly, during the pandemic, when the world was falling apart, my world started coming together. I got a job. And not just any job – Director of Networks and Relationships at a large and well-established community agency in Toronto. The beauty of this position was its deliberate valuation of lived expertise as akin to academic and professional experience, as well as its fellowship structure and focus on equity-denied identities. Over the 12-month duration of this role, I was supported to share my skills and knowledge in my own way while also being mentored and coached.

Instead of expending energy on proving my ability, I could now focus on bringing value, competence, and know-how. Sree was my boss – in every sense of the word. She helped lower barriers and coached me on key areas of development. She held me accountable, and she challenged me: but she was also so much more than that. Sree represented culturally competent leadership that embraced empathy and flexibility as tools of empowerment and efficiency; she was reciprocal in trust and vulnerability; she stepped in front to shield me when appropriate and had my back all the way. With that type of relationship, success was more than possible. I’ve been employed full-time ever since. 

The intersections that once threatened to bury me in obscurity (Black, poor, disabled, gender-expansive, foster kid, sexual violence survivor), are now my value points. My varied experiences with stigma and discrimination, as well as the power of privilege leveraged in the stead of those without it, have influenced my worldview and commitment to universal belonging and empowerment. Society is finally coming to recognize that lived expertise is hard-earned wisdom, born from the grind, the grit, and even the awkward humour of navigating life at the margins.

There’s something in the proficiency honed by living through an experience and being impacted by it that brings a special type of knowledge and knowing that cannot be fully understood except by those who have borne it. We, the first-voice, living experts are integral to the co-creation of new ways of being and universal systems that work for everyone.

This is my why. This is why I do what I do.

How about you? What brought you to your work?

Understanding your own origin story will improve what you do and how you do it.

It takes more than desire to achieve equitable systems and relationships. You can’t do it on your own, and you shouldn’t. Getting to optimal outcomes that meet diverse needs requires innovative leadership. It requires us to incorporate the stewardship of the people most impacted. It must be founded on authentic relationships of shared power.

This series is a multi-part invitation to join me as I break down the big questions:

• What does it mean to work meaningfully with living experts?
• How do we design inclusive cultures and practices?
• What is inclusive communication and how do we use it?
• What does it look like to nurture authentic relationships?
• What are the common mistakes we make when we work with living experts, and how do we fix them?

And yes, we’ll talk power, payment, and hopefully have a few laughs along the way. After all, this work is messy! But if we can’t have a good time doing it, it won’t be transformative. You don’t need to have it all figured out. Just be willing to start.

I’m excited to be on this journey with you, and if you have any doubts about what is possible, just remember that if a girl from Chester Le Blvd with multiple vulnerabilities and a blurry dream can show up and lead, you can show up and learn.