It's been a long time coming
Creating space to sit with the feelings and emotions of disabled life
I’ve been wanting to write about disability and mental health for a long time. I can trace this specific idea back to about three years ago during a conversation with my friend Dan, but if I’m honest, I think the seed was planted earlier than that.
My learning started young. As a child with a neuromuscular disability, I grew an understanding of how disability and mental health intersect before I even knew what the word ‘intersection’ meant. I learned from medical appointments, where doctors asked about every physical symptom under the sun, but never asked about how I was doing mentally or emotionally. I learned from every access barrier that proved the world wasn’t built for me, and every educator who proved that the disability experience was deeply misunderstood.
My disability was physical, but my experience was far more.
It’s this early foundation, perhaps, that led me to become a therapist.
Like many 90’s kids, my parents gave my brother and I school-year memory books for each grade. Three inches thick and quite literally falling apart, my book somehow continues to hold photos, report cards, and significant projects of my elementary and secondary years. In grade 3, a section asked what I wanted to be when I grew up. I wrote down “psychologist.” Although I’m not a psychologist, a psychotherapist is pretty close from a 8-year-old’s perspective!
Looking back, I consider this one of the first seeds.
By this age, I had undergone countless experiences that built up my understanding of disability. I smiled through medical procedure after medical procedure, trying to be a ‘good patient’ while counting ceiling tiles in the fluorescent light. I spent hours away from my classroom to do my prescribed physiotherapy programs, which felt less like exercise and more like becoming a marionette doll. I was inundated with new equipment and technology to help me navigate the world, in a frantic attempt to keep up with my growing body and progressive loss of function.
The focus was placed on survival, which made sense based on the fragile state of my health. However, I can’t ignore another truth: There was so much attention on my physical needs, and so little on the emotional experience that accompanied them.
I felt more and more alone as my non-disabled peers grew up and fell in love with new activities that left me behind. My young mind learned how to escape in moments of medical trauma, into my own imagination and ‘secret garden.’ In the same way, I recognized the burden of my care and instinctively learned to shrink my needs based on those around me. Yet, I was still a child needing to be taken care of. There were many late nights spent crying with my parents, as I desperately searched to understand my place in the world. The narratives from others were often conflicting; some people dismissed me as being too young, while others praised me for being so mature for my age.
These experiences are not unique to me, nor are they unique to childhood. And while my initial understanding came from my own disabled body and experiences, it expanded from the stories of chronically ill and disabled folks I’ve had the privilege of listening to, both personally and through my work as a therapist.
I started practicing psychotherapy at the beginning of the pandemic (and before you ask, yes, this was quite the initiation into the field). These early years of my career were overwhelming, trying to support others as the world shook with fear, grief, and loss. And yet, something beautiful was forming in disabled online spaces. There were people supporting each other, who shared a mutual understanding of the realities of living in uncertainty. We didn’t always have answers, but we were figuring it out together.
Hindsight showed me just how important this time in the disabled community was, because not long after, when the world ‘opened’ up again, disabled people were left behind. People took comfort in the idea that only those with ‘preexisting conditions’ were at risk, with little discussion about how that comfort was rooted deeply in ableism and the belief that non-disabled lives matter more than others. I felt horrified, but not surprised.
During this same period of time, social media was flooded with any and all things related to therapy. Mental health content was everywhere and, while this excited me as a new therapist, I couldn’t help but notice the familiar lack of content around disabled experiences.
Why aren’t we talking about disabled isolation?
Why aren’t we talking about advocacy burnout?
Why aren’t we talking about the emotional weight of being dispensable by society?
This was when I first considered making this space.
And, I’ll be honest, I was nervous about entering online spaces. Part of me still is. The online world often lacks nuance, thrives on misrepresentation, and contributes to the historical reduction of disabled experiences. As a white ciswoman, I recognize my privilege. Disabled people are often painted as a monolith, but the truth is that the disability community is wide and diverse, with so many identities and intersections that shape experiences. Mine is just one.
With these nerves, I turned to my friend Dan Darkow for guidance.
My friendship with Dan began with being board members for NMD United, a peer-led nonprofit for adults with neuromuscular disabilities. But right from our first meeting, we hit it off. Our friendship grew out of a mutual love for Schitt’s Creek, Taylor Swift, and disability justice.
Like myself, Dan was immersed in disability not only from his own lived experience but also professionally. His passion for inclusion, equity, community, and resources extended from his personal circles to his leadership at the Miller Center for Student Disability Services at Miami University, NMD United, and many other disabled spaces. To me, Dan was a bit of a unicorn and I admired his unique way of moving through life as equally practical and fearless.
I trusted Dan to understand my tangled emotions around how I appreciated the increase in mental health dialogue, especially in light of the pandemic, but was also frustrated that the world was once again leaving disabled and chronically ill folks behind. I told him about my growing desire to write about the connections I’ve made in my own therapy, concepts and tools I’ve shared with clients as a therapist, and stories I learned from the disability community.
Dan listened to my fears, hopes, hesitations, and everything in-between, and he didn’t overthink it at all. He just said: If you have something to say, say it.
For years, Dan was the only one who knew about my idea. He’d quietly check in from time to time, and encourage me without ever pushing. My steadfast cheerleader. But while I was so appreciative of his belief in me, I just wasn’t quite ready.
My decision swayed back and forth through different seasons of my life. Buying a home… getting engaged… navigating medical illnesses… These were all things that kept me busy, but also came with their own complexities, emotions, and grappling of what it means to live in a disabled body.
I could never seem to settle on when, so I resigned to taking the leap ‘one day’.
Things changed at the end of 2025.
Dan got really sick with a respiratory illness and ended up hospitalized. It was weeks of touch and go, waiting in heavy uncertainty. Then somehow, like the magical unicorn he is, Dan made it and the flood of relief was indescribable.
As I slowly settled back into the safety of knowing he was okay, my brain was stuck on all the what ifs. It was a fierce reminder of how fragile life is. Part of being in the disability community forces you to remember this almost daily. And still, it doesn’t make close calls any less jarring.
So in the new year, after Dan was home and recovering, I made the decision to stop waiting and just start writing, even if I wasn’t 100% ready. I reached out to my friend Jess Oddi, who is a groundbreaking disabled graphic artist and advocate, and asked her to create the look for this space. I was kid-in-the-candy-store excited and couldn’t wait to surprise Dan.
But that fragile reminder of life hit again.
Within hours of looking over the design, I received a text message from a friend that Dan had died unexpectedly. It was a total shock and felt as if the world flipped upside down.
The months that followed held more grief than I can even put into words. Loss, adjustment, gratitude, pain, and waves of everything… all at once. Like so many of his friends and family, I found comfort in reading the flood of stories describing his sarcastic humour, adventurous spirit, and profound impact on countless students, friends, and community members.1
I also found comfort in rereading our text messages, photos, and memes. I even discovered a saved screenshot on my desktop of a quote Dan had framed in his office that said: “Instead of telling disabled kids ‘you can do anything you want if you put your mind to it,’ I think we should tell them ‘the things you are capable of doing matter.’”
And now, here I am writing the first post.
I know that I will never stop grieving Dan. I’ll never stop missing him, our dance parties, or our 411 gossip sessions. And, I’ll never stop learning from him.
So I’m choosing to take a leap in his honour, trusting in his belief that the things we are capable of doing matter. Peer-led disabled spaces matter. I’m imagining his dramatic eye-roll at how long this took me, and also him cheering me on for choosing to say things I believe are worth saying.
My hope is that this space becomes a home for exploring and understanding the emotional lives of disabled and chronically ill folks. All too often, disabled experiences are reduced to our presenting symptoms and dismissed by systems that focus almost entirely on the physical. When the truth is, we need more conversations about the emotions, identities, intimacies, complexities, and all that comes with disability.
I don’t have everything figured out, but I have stories and I truly believe that we can learn through them.
Thanks for being here,
Brooklyn
To learn more about Dan and his legacy, and to donate to the scholarship established in his honour, click here.
I am so glad you started this space! Lots of love my friend.