Someone to Understand
Michael Wostenburg
Listen to Mike's podcast by clicking on any of these platforms
Today we speak with Mike Woestenburg about his experience traversing the medical system and social stigma with an unnamed disability for years. He talks about the journey this took him through, finally naming his condition, “Conversion Disorder”, and discovering the community built from others experiencing the isolation of CD. Take a listen!
Participant Reflections
Someone to Understand
Michael Wostenburg
Each workshop produces a creative participant reflection – a personal take away from the story they just heard – that is voluntarily shared with the wider community.
We believe that personal narratives have the power to connect individuals across socioeconomic boundaries, and that the rich creative ability of our community is the most effective tool we can wield against the stigma that prevents necessary social change.
Featured Artist
Someone to Understand
Michael Wostenburg
Liz Dempsey
This piece speaks to the spectrum of our past as ally/ opponent, to the active stillness of soul as indomitable strength.
5.5”x 3.5” Coloured pencil, ink, soft pastel on paper
Featured Student
Someone to Understand
Michael Wostenburg
Rosemary McCalister
I am an undergraduate student in Sociology at the University of Victoria, and I identify as disabled myself.
The storyteller that I experienced was Michael Woestenburg. Michael's story drew on themes of hidden illness/disability and finding solidarity, and there was a lot that I found resonant there.
He discussed his experiences with his disability, his struggles gaining a diagnosis, as well as difficulties with housing discrimination, being denied service in restaurants, and other, more subtle forms of discrimination as a result of ableism. He also talked about the experiences of finding connections with other disabled people, including those that share his disability and the feeling of affirmation that came along with that.
The parts of his story that touched on his issues with finding a diagnosis and being believed by medical practitioners inspired the first of my storyboxes that read “It’s NOT just ALL IN YOUR HEAD.” Several of my disabilities were ones that took many years to be diagnosed, and I’ve faced a lot of difficulty finding doctors who were willing to listen to me.
Sometimes it’s not even about getting access to specific medical care, it’s just as simple as wanting someone to believe you when you know that something isn’t right, or that you are different. That it’s okay to be different, and to get support and find other people like you.
The stories shared in the session really made me think about the medical field and how often doctors operate on the belief that if they can’t understand or interpret something, your experiences might as well not exist.
When I finally knew what my disabilities were, it opened up a whole new world for me, and helped me find new friends, and new ways of looking at myself.
I still struggle, though, as Michael does, with other people’s perceptions of me. His movements are a big part of his disability, and one that has gotten him some issues in his life because people chose to make assumptions when you don’t present as perfectly ‘normal’, or stigmatize that.
It made me really think about my own relationship with being disabled. I consider myself a disability self-advocate, I study disability, I have tons of disabled friends, but I still am constantly catching myself, forcing myself to seem more ‘normal’. I try not to let myself stim or make movements, like hand movements or rocking back and forth, as would be natural to me to do sometimes. I try and force myself to mask, and to act like everyone else, because it’s seen as a ‘disturbance’, or ‘weird’, or because I get self-conscious about it, but I wind up feeling exhausted and unnatural.
The problem isn’t us, though, it’s in other people’s perceptions of us, and how they treat us because of it. Seeing Michael talk about his struggles with the same sorts of issues on an even larger level gave me some courage to want to be more me, which inspired the second story box in which I said “your judgement is more disruptive than my movement.”
I appreciated the opportunity of the workshop, and the power that sharing your stories can bring.
Community Ally
Someone to Understand
Michael Wostenburg
Sarah Potts - City Councillor of Victoria
As a City Councillor I spend a lot of my time advocating for affordability and ensuring that we are making room at the table for voices and experiences that have often been left out. I was expecting to frame my involvement as a Community Ally around my work for the city but what really resonated with me was my familiarity with the stories of poverty and isolation.
It took me a lot longer then expected to write this reflection as the workshop brought up a lot of old and familiar feelings. I have publicly shared excerpts of my history of living below the poverty line but I have done so carefully and it has been deeply uncomfortable.
Now weeks overdue, I am caught with my fingers above the keyboard not sure how to communicate the embodied shame from years of living below the poverty line or how poverty and isolation go hand in hand and how those broken connections stick with you like an unwelcomed shadow.
A childhood of empty cupboards, a homelife of untreated mental illness and untethered addictions was something I didn’t have language for, only shame.
A childhood of begging to not be seen for what I was, because who I was, was what I did not have, led to an early adulthood of feeling like I had been rightfully forgotten.
A mother at eighteen, I was ashamed of the scarcity I would pass to my daughter.
I went on for years without recognizing how my family, like many others, had been undermined by a system that says it's you, not me. Who lays blame at the feet of those who are just trying to survive.
Within our group discussions we spoke a lot about the shame carried around by those who are caught in poverty or addiction. Instead of recognizing the systemic failings that privilege some and leave others behind, we often internalize, thinking if only I was better or that I truly deserve this.
But there is nothing wrong with me. There never has been. This is what I truly and more deeply recognized when listening to the stories in the room. These are stories of survival. These are stories of strength. I realized recognizing my story as anything else has made me complicit in undermining my own power.
Often driven by but always running from my story I was really taken by the willingness of others to share their experiences and the beauty, power, and transformation that could be forged through such a seemingly simple act. Though even in that beauty and power stigma and shame were present.
My story board followed these conversations and asked ‘how can we give ourselves the compassion we need to heal?’. How can we thrive when society teaches us we deserve exactly the hand we have been dealt? Part of my pledge is recognizing that I don’t readily have the answer for that. I didn’t expect this workshop to lead me towards this degree of self reflection, or that the outcome would be an inward facing pledge but I will always be that kid with bare cupboards and I am learning to recognize that there is power in that. I pledge to wield my story with a new power and strength. I feel a new fight from deep in my bones and I am deeply grateful for the people and the stories that reminded me of who I am and who we are. We are survivors, we are surviving, we are strong and stronger still together.