Creating Space for Belonging and Inclusion for People Living with Disability
In a speech delivered twice at the same location, 11 years apart, West Hub member Roxanne Ulanicki reflects on disability inclusion efforts and what space for belonging truly looks like. First published August 2017.
In 2006, Roxanne Ulanicki delivered this speech at the first Annual Human Rights Awards hosted by the John Humphrey Centre for Peace and Human Rights. The location of the awards was accessible for participants with mobility barriers if they sat at the top of the gallery; however as the speaker, Roxanne had to have two young men carry her down a set of theatre stairs because there is no wheelchair access to the stage.
On August 23, 2017, nearly eleven years later, in the same location but after a major renovation and disability access upgrade, Roxanne Ulanicki was to speak again and help host the Justice4Reel Film Festival. The accessibility renovations, while they allowed her to be on stage, did not help her dignity. After taking the wheelchair platform down to the stage, she reflected on her speech ten years earlier and decided to deliver the same speech again. After ten years, she felt that in terms of disability inclusion, Alberta is at the same place it was then.
Thank you for the assistance.
So tell me, how did you feel watching me be carried down the stairs?
Maybe many of you felt sorry for me. Some may have been surprised that there is no appropriate access in a public facility. Some of you, many have even been annoyed about the delay. And some may have thought, “Boy I’m glad that’s not me”.
But that delay and production is a part of my life; it is an example of what I go through several times a day.
Many of my peers would decline the opportunity to talk with you here today because of the access limitations but that is exactly why I’m here. Too often we stay home because we don’t want the embarrassment of being treated so differently. Too often we stay home because we don’t want to feel vulnerable and in a position of weakness.
So I hope you will allow me a moment to tell you a bit about my story and ask for your assistance in creating positive change for people with disabilities.
The reason I use a wheelchair at this time in my life is that I was born with a condition called Spina Bifida (which is basically a spinal defect that occurs in the first four weeks after conception). I had my first surgery of many when I was 8 days old here in Edmonton in 1968.
I grew up on a farm in rural Alberta and was raised to believe that I could do anything I set my mind to, not only by my parents but by my teachers and doctors.
I attended regular schools, got good grades and was the only person with a very visible disability in my community.
As a child, all my needs were met, our public health system not only saved my life but it taught and encouraged me to believe that I could succeed despite my visible differences. I felt loved, valued and prepared to contribute to society.
At the age of seventeen I tried out for and was selected to play on the Women’s National Wheelchair Basketball team. I was thrilled and honoured to represent Canada in the 1988 Paralympics in Seoul, South Korea.
I was a team member and travelled internationally for 4 years. I had some of the most memorable experiences of my life. In Korea, they built apartment buildings (10 storeys high) with ramps instead of stairs for fire escapes. In the Netherlands I stayed at lakeside retreat that was completely barrier free and yet you might not know that if you weren’t a wheelchair user.
Those experiences and my childhood are the reasons I speak to you today.
Although I managed to delay the effects for a few years by playing basketball and getting a post secondary education; I’m here to tell you that at the age of eighteen life changes drastically for individuals with disabilities in Alberta.
My entire childhood had focused on my body; keeping me walking as long as possible. It had taught me that medical professionals knew my body better than I did. That I should seek out their knowledge and assistance.
But suddenly at eighteen, we are no longer children and required to go elsewhere for the supports to independence we have had our entire lives. We are thrown into a bureaucratic system which constantly requires us to prove we are disabled enough.
Suddenly we have to beg for what was once given without judgement. No longer do we get to interact with professionals who even understand Spina Bifida. We become dependent, we are lost, where is the help, what do we do?
Back then, I never thought to look to local charities for help because I had worked so hard to be a contributing member of society, not one who takes from it. My pride and self esteem were wounded.
In the adult world of disability management, past experiences predict that I’m going to be treated like I am incapable of making basic decisions in my life.
Why does someone else decide what wheelchair is best for me to use? Or what medical supplies I require?
My personal nightmare began when I entered the workforce and quickly realized that even though I had a good entry level position with the federal government the entire amount of my disposable income was being used to cover the cost of disability. Even with private insurance through work, everything had a price.
My dreams of going on vacation, saving for retirement and living in an adapted home disappeared. Now that I was working and earning an income I no longer qualified for most support programs. If I got married or lived common law, my partner’s income would further disqualify me from assistance.
Thank goodness I didn’t need any help or assistance in my home because I would have had trouble accessing it. Even today, people with disabilities have to fight just to get enough personal care to survive. The challenge often begins with finding an appropriate place to live. It took me almost 20 years to find adequately accessible housing. And I know of many adults today who are required to live in senior’s homes because there is no where to live or they are too angry to live.
I spent most of my twenties lost, angry and disillusioned. I felt set up and abandoned. When I asked for help at the age of 24 I was cast into the mental health system to spend the next six years on anti-depressants which were not the appropriate solution to my complex issues.
I feel grateful to have met an amazing psychologist who finally looked past the wheelchair and the medication and saw a bright, intelligent, thoughtful woman.
She taught me that it was okay to grieve the loss of a body I never really had and to own the one I have. And to grieve the broken promises of doctors that said, “This surgery will help you walk.” She taught me that I know my body better than anyone and that I am just as knowledgeable and as informed as the professionals I interact with. She helped me to understand that only a short time ago children with disabilities often did not live to adulthood. And most important, she helped me to understand that anger is a cover for the real feelings inside.
After many years of anger and frustration, I allowed myself to heal and forgive. And with forgiveness one realizes that rarely do people intend to offend or demean me. More often than not, they are uncomfortable, uneducated or just unaware. More often than not, they think they are showing me kindness.
To me, more important than kindness is respect. And I believe the only way to gain your respect is to walk the walk…hehe….so to speak.
I’m tired of observing from the outskirts…or the top of the stairs.
I’m tired of climbing the stairs and accommodating the walkers of the world.
I’m tired of celebrating how far we’ve come with disability issues when it is archaic in comparison with other developed countries that have proactive laws rather than our reactive laws.
At the age of 38 I feel completely worn out from just trying to survive in one of richest regions in the world. I feel embarrassed that many would consider me to be a success story and heart broken at the lost potential of an entire generation of people with disabilities.
Although tired, I feel lucky to have carved out a life that I find rich and fulfilling. I’ve done that by connecting with and mentoring others with disabilities and their families. But too often I am powerless to help and overwhelmed by the barriers whether it be physical, emotional or environmental.
What do I want?
I want the society we live in to put human dignity before dollars.
I want to live in a society that is rich –rich with opportunities not a society full of rich people.
I hope that by hearing my story today I’ve changed your perspective about people with disabilities…..or maybe just reinforced one you already had.
We all have an opportunity right now to contribute to positive change for our futures. It’s up to all of us here to include each other.
ableism, accessibility, belonging, dignity, Disability, radical inclusion, respect, support, Western Hub