My name is Ben and I am in my late twenties. At age 16 I was entering into a dark period of my life. There were many changes which would give meaning to my life whether I liked it or not. I will tell two of them. First, my parents had split and I am the oldest within my mother's side of the family. I also have a little sister. So I felt the pressure to be the man in the house however possible. Whether that pressure was healthy for me is inappropriate for this blog. But it has led me into the CSIL program and my parents would say that I am stronger because of it.
The second change was that I would develop scoliosis, which is a permanent condition where the bone of the spine would bend from its natural shape, which has resulted in my body leaning towards one side. I have quadriplegic Cerebral Palsy, which requires me to be in a wheelchair with custom seating in order to contribute to society. I could say that I could have lived without the wheelchair and custom seating. But I don’t know if I would be writing this and joining the ACE campaign if I had. I was running around within my walkers during most of my childhood and I don't speak with my vocal voice. I am also hard of hearing. My parents decided to enrol me in mainstream education. But with my bodily circumstances, I had a developmental delay with my learning. For example, I was in grade four and my reading skills would be appropriate for grade one.
It was when my parents realized that if we purchased a power wheelchair, I would then be able to use my intellect more effectively by accessing a speech device. So I got my first power wheelchair and speech device within my late childhood. To ensure my body was comfortable and functional for me to drive the wheelchair and use the speech device required us to grow closely with my childhood occupational therapists, providing me with the custom seating. The custom seating was to control my muscle spasms and the development of my body while maintaining my ability to contribute within mainstream life as much as possible. Whenever I look back to where I am now, I realize that I owe it all to everyone who cared for me. However, at age 16 I was transitioning into adulthood services and outgrew my seating. We weren't able to see an occupational therapist for six months and I would develop scoliosis. I share this story with righteous anger because I got scoliosis from falling into a gap within our medical system. It was just a systemic gap. It was completely avoidable. However, besides the anger, my crooked back has taught me how essential being dependent on others is. It has been a gentle reminder, even though it can get painful at times, that having a community is as vital as my personal stability. My community is the reason why I am still contributing to society today and at the core of my community are my CSIL employees. They are the backbone of everything that I do.
I was able to use the Choices for Independent Living program to pull myself out from age 16 and follow my heart to live the best life possible. At age 21 I decided to live on a university campus where I managed to get support from my support workers while enjoying dorm life. Around age 23 I moved to my first place in Vancouver where I am now. Now I am studying at Langara College and building my career. My career revolves around the systemic gaps which the disability community experiences. My passion is to make society a little better than what it was when I was born. My CSIL employees are giving me the stability to do that. They get me up in the morning and get me to sleep at night. They cook my food and accompany me within my life. They taught me how special the employment is. The employment is as important as having a spine and I am forever grateful for them.
