03/16/2022
I’ll go first.
My name is Luke and I have cerebral palsy. I created this page because I wish that I had something like this when I was going through my darkest times. As a person with a disability, I found as I grew that the world is not as accommodating as it should be and that the people in that world can be cruel because they aren’t aware of the challenges we face as a community.
Because I wasn’t aware of these problems until I got older (I’m 28), they created anxiety when people told me how I should act. I was also told how to make friends/keep attendants by hiding my disability and the pain that comes with it as much as I could. This was the wrong advice. I also had someone tell me, flat out, to not be myself and to change who I was.
This advice made me start to question who to be and how to act. It got so bad that I started second-guessing and physically gagging every time I would do something remotely social. It’s hard for someone with a physical disability to go out with friends due to the planning and requiring of an attendant. I started to think it needed to be more organized than it actually had to be so I started to avoid going out. At the peak of my anxiety, my disability started to define me and who I was as a person. Thankfully, I have great family and friends that are helping me to cope with my social anxiety as a share with them. I’ve learned that if people don’t like who I am, I don’t need to change for anyone.
I am head coach for a boys’ varsity basketball team. As such, I run in to obstacles that are rather comical at this point. These hindrances include doors that open inward instead of outward and can’t accommodate my wheelchair. There are doors that do not have accessibility buttons in the 21st century. I am in a power wheelchair with limited use of my hands and can’t open a door without a power button. Also, being able to go for walks should be basic, or in my case “drives”. However, there is snow on the ground for 8 months of the year. Snow + wheelchair = stuck. People are always shocked that someone in a wheelchair could be a head coach with 9 years of experience. They will say it is such a nice thing and an inspiration as if it’s something out of the ordinary that I’m doing, not something that should be “normal”. I worked very hard to get this position and the school that I work for has done everything to accommodate me. I am so fortunate and I love my work, but it is volunteer work.
It is extremely hard to find paid work. I wanted to be a greeter at the Gold Eyes Stadium in Winnipeg. As soon as I told them I was in a wheelchair, I was told that they didn’t want to babysit. At this point, I was 21 or 22. Fast forward, I am now 28 and have been looking for paying jobs high and low and still haven’t found one that can accommodate me.
People often ask me why I’m looking for work if I have funding. This funding is not enough for me to live on my own without a roommate. It is also barely enough to live on my own with a roommate. It doesn’t allow me to pay for a 24 hour attendant, so it’s hard to not live with my family. I am sometimes told that I don’t need a 24 hour attendant because I have a power chair and some upper body function. However, I can’t cook on my own, I can’t p*e on my own, I can’t drink water on my own and I can’t open door handles on my own. If I drop the remote for the TV, I can’t pick it up. These are not sour grapes, I love my life and these are just facts.
In conclusion, yes I have challenges and these are my realities, but I also have happy news. I am currently working on creating a portfolio so I can be a coach in the USA or Canada. I am currently learning how to shop with a budget that may allow me to start considering moving out. I am working on building my self-esteem with my great friends and family as I build my own community. I am so happy with my life despite the challenges!
That’s my story, what’s yours?
