I sat down with Bethany Knight, a participant of the NDIS with Cerebral Palsy and discussed openly her upbringing with disability.
Bethany:
My mother was a kindergarten teacher for 35 years. So, she was very aware I guess when I wasn't meeting my milestones, you know, crawling and walking. But it took until I was two to be officially diagnosed because apparently, they like to wait until you do walk for the first time to make these kinds of assessments but that was many years ago. So, she knew I was different, obviously, but also, she was used to dealing with children who had disabilities and parents within the school systems who had children with different challenges.
My parents dedicated a lot of time to my allied health supports such as Occupational Therapy and such, but also, my mother would advocate at school for me, not to be excluded from things or make me feel different. I wasn't coddled. She would say to my teachers, "just be aware and keep her safe". I mean sometimes that didn't happen. One time we were playing "what's the time Mr. Wolf" and there were like 45 kids running and I got bumped and I fell over and broke my arm. So, my mum was like, "Okay well maybe don't let her do that.... but include her in things she can participate in".
My parents made physio fun and part of everyday activities really, so it wasn't a chore, but something I enjoyed, but also presented the idea to me, which I think is important for people with disabilities or anyone with any type of issues,
I'd say, and I now say this to my clients sometimes,
"just because you have a mental health struggle or whatever,
doesn't give you the right to be a crappy human.
Everyone has their stuff going on, but it's still not okay to talk to me like that."
I think sometimes kids with disabilities get a bit entitled and a bit coddled, and that's not helpful for them as humans, because life isn't easy, you know, for anyone, sometimes you get special treatment but not all the time. Life is hard and you must learn to manage that.
I consider myself lucky because of how I was raised. A client of mine with a mild intellectual disability was becoming unwell and she knew about my physical disabilities. I remember her saying to her doctor one time,
"look at Beth, look at what she can do because she got help when she was young. If I had had help when I was young, my life could have been very different."
She was older than me, I think at that point she was in her late 30s and she had really low literacy skills, and could do basic thinks for herself, and she was interested in employment, and she had life prospects, wanted to have a baby, but she hadn't met anybody and didn't feel like she could. It was really sad, and she acknowledges that if perhaps she'd had early intervention, rather than struggle through school and life. She could have had a life with meaning and purpose and achieved some of her goals of work and having a family.
But my parents were amazing. When I got into nursing, when I said that's what I want to do, we didn't know if it would work out. My orthopedic surgeon at the time said no, don't do it, you will get too tired, but he couldn't stop me. He could have said, "Well, if it makes you tired, you will just have to manage it" you know? Luckily, my mum and dad said that “if you can get into your course then we will pay for your first year of university, and we will just see how you go and at the end of that first year if it's too much, or it's too hard, that's okay.
We will just look at other interests of yours and other opportunities,
but for now, give this ago.
Make sure you stick it out, don't quit.
You must commit to it.”
The first year of the nursing degree also had a placement that gave me some practical skills and allowed me to know if I was going to be able to handle it. And so, my parents didn't just dismiss me and think it was just going to be too much for me. Whereas I think that could have easily been the case, you know, if I didn't have parents who thought, "We think she's got capacity and can judge yourself and she has been known to be able to do lots of other stuff people thought she wouldn't be able to do." I mean, looking back with what I know now, and how the medical system works, if someone had said to me: you can still do what you want and do a job that is caring for people and supporting them through tough times, but you could maybe do social work. That would have been a less physical job. That would have been good for me, but I didn't have that understanding and awareness then. So now I've kind of moved into a nursing role that takes a lot less fine motor skill. But yeah, it's tough when people don't get the support and opportunities as I did.
