Have you ever wondered what it’s like to be a cis, demisexual woman navigating the world in a nontraditional body? In this ongoing column, Nina shares the interior monologue of everyday, the one just for herself, to help her understand what’s going on in her mind. Sometimes it’s funny, sometimes it’s sad—life can be awful—sometimes it’s about how her disability affects her day-to-day social interactions. We are very excited to share it with you.
Bebe called me last month and said something along the lines of, ‘I didn’t realise you were going to be so candid.’
‘What do you mean?’ I said.
She said, ‘I didn’t realise you were going to take what I said verbatim and put it in your column. I thought the column was going to be about your experience of things only.’
I said, ‘Okay, sorry, I’ll be more careful next time.’
The thing about having a monthly column is that my life is just my life. The things I’ve written have actually happened, and I’ve left very little out, because very rarely are people privy to my interior monologue. It’s not often that people with disability get to tell their stories candidly. It’s too rough, it’s too raw, it’s too painful.
For June, I’m going to answer some questions that people have asked irl and online. All the people who asked them wanted to remain anonymous.
Tell me about the disability
What do you want to know? I replied. This was in irl question from Hot Date (okay, so this question isn’t anonymous, but he was very keen to know). Asking such a broad question is like asking me what it’s like to have brown hair. I’ve had my disability since I was born so I don’t know what it’s like not to have one. This is my normal. From speaking to other people with disability, we all adapt to our circumstances, and it’s often other people in the community who point me out as ‘other’, asking what’s wrong.
Most of the time when people approach me on the street, I am very open in conversation and explain to them that yes, I am okay, I have cerebral palsy, and they don’t need to worry. It’s happened so often that I don’t find it embarrassing anymore. But, when I’m with friends or family who haven’t had that experience, they feel a bit shocked.
My disability is part of who I am, but it is not all of who I am. I told Hot Date maybe one day I’d write a book about it because there’s too much to cover in just one afternoon, if he wants to understand the nuances of living in a particular body, we could discuss it over and over and over, or he could just come to all my medical appointments with me and ‘dip his toes in the water’ so to say.
What’s it like having a disability?
This is kind of similar to the question above, but let me just say that every person is different and every disability is different. So, I can talk a lot about what it’s like for me but if you’re wanting insight into lives of all people with disability, the best thing to do is actually engage with the person or people you’re wanting to know more about. Everybody has a story and mine is just one of them.
But, I’ll say this: you become more aware of some things. It’s common for people with disability to experience discrimination and other really shitty things.
How often do you see your physio?
Depends on what is going on in my body. If I’m ~feeling good~ I might see him only every three-four weeks but it’s been a rough year and I haven’t actually counted the number of times I’ve seen him lately. A lot.
What happens if you don’t see your physio?
For me, seeing a physio or seeking physical treatment allows my body—and by extension, my life—to run smoothly. I think of it like a car (stick with me here, I know, figurative language can be a bust sometimes). When my car is in need of some fine-tuning, I take it into the shop. It just so happens that my body is like a car that needs to go to the shop on a regular basis.
Isn’t that expensive?
What happens when you can’t afford physio?
I don’t go. Or, I would borrow money from people who know me well. They know that getting treatment directly improves my ability to go to work and do the things that able-bodied people might do every day without much thought.
My favourite physio, who would hate for me to mention him by name (love you G***), gave me a pep talk when I was about 16 and feeling really down in the dumps about the financial and emotional situation that comes along with my cerebral palsy. He said something like, ‘I get it, Nina, I do, but you can’t put a price on your health.’ He wasn’t saying this as if it were the only truth (sometimes you have to put a price on your health, and that price fits in your fucking budget), but he knew me well, and he knew that I needed a pep talk then and there.
I liked it so much that I got him to write it down on his business card, and it still sits on my desk at home, so I can look at it regularly and gain some of that wisdom and strength from his words.
Why is your column so sad?
Okay so, wow.
A couple of things my GP told me. She said that I’d been through horrific trauma (at the beginning of the year, the Land of Tragedy, if you will: the three huge tragedies in the space of a week), and that healing from that trauma will take some time. That has leaked into my writing and yes, the column is accurately sad.
One day, she reminded me that living with disability is very hard and that it’s okay to be vulnerable, to admit when things are hurting, because understanding the hurt helps the healing process. I am living my everyday life and not many people, except for my very close friends and family, know anything much about the Land of Tragedy (Bebe said I was allowed to talk about some of it in here though, thanks Bebe).
Prior to this column, I would speak only to three people about my disability and my feelings (Mum, Dad, my friend E, sometimes Lugia, okay that’s four people) because tbh it’s a heck of a lot of emotional labour and those people have known me for donkey’s years. So I guess there’s a lot of background to fit into each month. Background emotions, background shit. Who knows? Maybe it will become less sad as the year goes on and as the trauma fades into the background…
What’s that saying about time and wounds?
Why do you walk like that?
I have cerebral palsy, so I have abnormal gait, tense muscles, posterior pelvic tilt, muscle waste. In primary school I told the story like this:
When I was born, I was having a bad time in Mum’s tummy, so I knocked on the door of the tummy, and the doctor heard and let me out.
Will it ever change?
I will have my disability for the rest of my life, and I’ve been told that it may get worse as I age (but I guess we’ll have to wait and see e.g. my physio is great so lol maybe it will not get worse).
Are you drunk?
I don’t drink very often, so the answer is, most often and especially at 10 in the morning, no.
Is your disability contagious?
No. My disability was acquired in the direct aftermath of my birth and is not contagious. If you want more information about acquired disability, a GP would be a good person to consult.
Why is your right leg smaller than your left leg?
Please consult a health professional (GP, physiotherapist, orthopaedic surgeon, etc) for the correct terminology/reasons.
Your column is really negative, is that what you’re like irl?
Lol I don’t think so but I guess you’ll have to meet me and find out. Like, the column is actually meant to share some of the hardest moments of my life that no-one gets to see. The column is a place where you can read about these experiences and hardships in privacy; I use it to reflect not only on my experience, but as a grounding exercise to observe coping mechanisms, and to be more present in moments of joy.
Next month we’ll be back to the good ol’ interior monologue but in the meantime if you have any questions feel free to contact me on twitter or my email I love feedback and I want to hear your stories xxx
Nina is a poet and writer living on Turrbal Land. She was diagnosed with cerebral palsy when she was four years old. She tweets @ninabaldotto mostly about poetry and the weather.