Main Menu
MENU
Cart 0

Cerebral Palsy with Peta Hooke

By Hidden Disabilities Sunflower 7th January 2022Sunflower Conversations Share

 

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

Peta has cerebral palsy which affects her mobility. Peta uses a wheelchair as she cannot stand or walk independently, she also uses a hoist to shower.

The cerebral palsy was caused at birth when she experienced a lack of oxygen for few seconds.

At 12 Peta had an operation which went wrong and stretched her nerves too much resulting in chronic nerve pain. Extensive therapy was necessary to re-educate her brain to overcome the pain. 

Peta approaches life with determination, her outlook on life is positive and has led her to start her own business as a podcaster on her show called I Can’t Stand. As a Disabilities advocate her aim is to educate everyone about what it is like to have a disability, and remove the ‘pity tilt’ of the head.

In Peta’s words “nothing is wrong, I am just being myself.”

Further information: I Can’t Stand podcast

Hosted by Paul Shriever, Hidden Disabilities Sunflower

 


Transcript

Paul Shriever:
Hey guys, my name's Paul today, we're going to be talking to Peta Hooke. Peta is all the way from Melbourne Australia. Welcome Peta. Can you please introduce yourself?

Peta Hooke:
Hello, Paul. Thank you for having me today. Yes, my name's Peta. I'm a disability advocate and podcaster here in Melbourne Australia. And I'm so excited to talk to you today.

Paul Shriever:
Peta, you have Cerebral Palsy. This is a name for a group of lifelong conditions that affects movement and coordination.

Peta Hooke:
Yes.

Paul Shriever:
Can you just tell us a little bit about that please?

Peta Hooke:
Sure. So Cerebral Palsy affects many people in different ways, but the way it has presented in me is the fact that I can't stand, transfer, or walk independently. And I use an electric wheelchair every day of my life. I have hoisting systems that allow me to get in and out of bed, use the shower, use the toilet, but I'm very independent. I've been very lucky with the way my disability has enabled me to live an independent life. And it's a lifelong condition that's affected me since birth. The reason why it happened, was because I didn't get enough oxygen at birth. Those few seconds have resulted in my lifelong disability.

Paul Shriever:
How did that impact you when you were younger? I mean, in terms of how your parents dealt with that?

Peta Hooke:
I've never felt different. Never been told that my disability was a negative thing. It was just, well, the way I was brought up, it was an added element. Yes, it caused some challenges, but they just considered me Peta first, before they considered the disability.

Paul Shriever:
This COVID situation, how has that impacted you with your condition? Is that something that has been profound over the past few years? Because I know it's affected us here quite considerably.

Peta Hooke:
It's enabled me to start my own business. I took the leap and thought, "Right, there's a global pandemic. I'm not really that keen about going to work, for my own safety. Let's do the big brave thing and start my own business." And the beauty of working from home, is it means that it's super accessible to me. I don't have to worry about accessibility. I don't have to worry about whether the toilet's accessible, and it takes me three and a half seconds to get to work. Of course, it has been difficult for all of us. One of the major ways it affected my life, particularly early on 2020, I decided to stop having support and personal care. Since then, I've been living with no support, and being fully independent. Now, yes, that's challenging, and it's a very privileged thing to be able to do, because I know a lot of people with disabilities aren't in that position to be independent, even if they wanted to.

Paul Shriever:
What sort of challenges do you have being on your own at home?

Peta Hooke:
It helps that I have a house that's been adapted to me. I should highlight that. That's fundamental to my independence, and I've been very lucky to have renovated this home specifically to my needs.

Paul Shriever:
Can I ask you, what were your first memories of, I don't know, finding out about yourself and discovering what you could do, what you couldn't do, and just some of those challenges?

Peta Hooke:
As far as registering that I was different? Look, to be honest, I don't really consider myself different even today. I just consider myself as someone that needs a mobility aid, something to be adapted, but I've never really considered myself to be different.

Paul Shriever:
You are listening to the Sunflower Conversations With Paul. To learn more about the Sunflower, please visit our website. Details are in the show notes. Did it impact you mentally?

Peta Hooke:
From my understanding Cerebral Palsy is brain damage, but they did lots of work on my muscles to see if that would assist me to be able to walk. So I had lots of physiotherapy as a very young child. When I was 12, I had an operation that went wrong. They stretched my nerves too much, and I got chronic nerve pain. It's a one in a million, actual one in a million thing that could happen to someone. I had to re-educate my nervous system on how to operate.

Paul Shriever:
So how long did that take?

Peta Hooke:
About 10 years. Yeah.

Paul Shriever:
Wow, that's that's a huge thing. That alone is a huge thing to take on. I mean, goodness me. So did you need, what did you need a therapy thing? Did you have to go, how did that come about?

Peta Hooke:
I was in they, to be honest, they didn't know really what to do with me at the time. I was in hospital, I guess, not for that long, but it felt like a long time for a 12 year-old. It was five weeks, with ongoing therapy for the following decade. But I think that was a fundamental event that really formed my personality. But as far as challenges, that was super challenging, because here in Australia I was ending primary school and going into high school, trying to form new friends, trying to manage pain. It was very challenging.

Paul Shriever:
Did that impact you in any kind of mental way, did it give you anxiety? Did it give you, how did that impact you in that way?

Peta Hooke:
I didn't know what mental health was at 12. So I guess, I just took it day by day, but I have to say I've always been very lucky in the fact that I've never struggled with my mental health.

Paul Shriever:
I think that if you have a visible disability, that can impact an invisible disability, in the sense that it can affect your mental state?

Peta Hooke:
Yeah, I mean, and I don't get me wrong. Of course, it was challenging. There's always periods, particularly when I was very sick. You are constantly in pain, you're on pain medication that's making you hallucinate. It was full on, but I've always been pretty determined to see the other side, because I think, "Well, if it's really bad at the moment, it's just not the end yet."

Paul Shriever:
Peta, do you think that by having loving parents around you, that really helped you?

Peta Hooke:
It's fundamental. I cannot overstate how important my parents have been. That they've been able to form me into the person that I am today, because both of them have very positive outlooks on life. They are very no-nonsense, and very to the point. And I just basically got on with it.

Paul Shriever:
What is a typical day like for you?

Peta Hooke:
Because I do everything for myself with little support, which is my choice, I should definitely highlight that, it takes me about two hours to get up, and get ready, and be at my desk, if not a little bit longer. So once I'm organized, I eat breakfast and then I do what I love to do, which is speaking into a microphone, just like we are now, Paul. And I produce my own podcast, and I do disability advocacy as well.

Paul Shriever:
Tell me about that, please?

Peta Hooke:
Yeah, it's called the I Can't Stand Podcast. It's with NOVA Entertainment, which is a radio station here in Melbourne. Basically it came from the idea that people really don't know and understand what it's like to live with a disability. So every week I answer a question from my audience, and I'll answer any question that they have about what it's like to live with a disability, because I only have to go around and get a coffee, and somebody will ask me a question. And there's got to be a more efficient way to educate public. This is how I've chosen to do it.

Paul Shriever:
Fantastic, and we'll put all the details for this in this podcast as well. We'll put them in the notes.

Peta Hooke:
I think it's important for people to understand that people with disabilities are just like them, and we have nuanced, individual personalities, and we're all different.

Paul Shriever:
What are people's reactions to you when they see you out?

Peta Hooke:
Mainly I get the pity tilt of the head, like, "Oh, what's wrong with you? What happened?" That sort of questions, which are always challenging to answer, because to me, I don't, I know something happened, but I can't remember it happening. So for me, nothing is wrong. I'm just being myself, being Peta.

Paul Shriever:
You are listening to The Sunflower Conversations with Paul, to share your story, details are in the show notes. Do you have any examples of difficult situations where you've gone into a shop, wherever, and found that you're stuck?

Peta Hooke:
Happens all the time. I was at a work conference when I used to work in corporate, and the toilet for, there was no accessible toilet. So the accessible toilet that I have to use is a changing place's toilet, which I know are also in the UK over there. The changing place's toilet was in a library. So I jumped in the car, it was 10 minutes away from the conference, and the toilet was upstairs, which was very odd to put the accessible toilet upstairs.

Paul Shriever:
Yeah.

Peta Hooke:
Anyway, I went up there. It was all fine, but then I was on the top level and the lift stopped. So I was stuck on the top level of this library, thinking, "I need to get back to work now, what am I going to do?"

Paul Shriever:
Oh.

Peta Hooke:
I called a technician, couldn't fix it. Long story short, they called the fire brigade. I had six gentlemen carry me down flights of stairs in front of the whole library.

Paul Shriever:
What needs to change in terms of how your conditions are perceived?

Peta Hooke:
I think it would be great if the medical industry, what's the expression, not industry, the medical profession.

Paul Shriever:
Profession [crosstalk 00:11:41].

Peta Hooke:
If the medical profession could approach people with disabilities as people first. They tend to go to the worst outcome first. So like, okay, my parents got sat down and said, "Peta will never be able to write her a name. She will not be capable of doing anything academic." Just a very sweeping statement that could have defined my life. Now, luckily I have the parents that I have, and I have two degrees, including a Master's degree.

Peta Hooke:
So it's those, at the very start, if parents are told that their children have limited abilities or capabilities, that can really impact their lives going forward. I think if a doctor could say to parents, "Yes, this is your child, and this is the diagnosis. And these are all the wide-ranging, how it could present in them. But please remember that they are your child first. They are not their disability first. And them being your child, means that they have all your attributes and abilities as well. So don't give up on your child before they've even had a chance to really show you who they are."

Paul Shriever:
What are your hopes for the future?

Peta Hooke:
I hope that there's a greater level of equality for people with disabilities throughout the world. And that's a really big statement, with lots of underlying things that define what equality is, but things like employment, things like education, things like accessibility, things like discrimination, things like housing, things like transport. There's lots of areas that determine equality. I always really love traveling internationally to show to people that it is possible. Even though culturally, it might not be quite accepted. The more that people like me or people with other disabilities are seen to be conducting normal lives, the more other people might think that we're valued members of the community.

Paul Shriever:
How did you learn about the Sunflower?

Peta Hooke:
So I learned about the Sunflower via social media. I follow a great person, their name is, on social media, is Disabled Eliza, and they have really advocated for the Sunflower. So that's, that's where I found you guys.

Paul Shriever:
Do you use one?

Peta Hooke:
Particularly if I needed to highlight to someone that I suffer with fatigue, or if I was really suffering with pain that day. Particularly in large environments, not that they're really happening at the moment, but corporate events, things like that. So I don't have to fully explain maybe why I need to take an extra breath, or why I'm just taking a minute.

Paul Shriever:
Do you feel that the Sunflower is needed in society?

Peta Hooke:
Absolutely, I think it's a fantastic initiative, because there are so many people that do have hidden disabilities. I know from hearing from other people with that experience, that there's so much labor to educating what it is like to have a disability. So it's such an easy thing to just pop on, and then people that need education can just look and think, "Okay, I know what to do."

Paul Shriever:
Without the understanding of what it is, there's not a lot of point of wearing it, is there? Do you know what I mean? So, it's about, it's about educating and spreading awareness of what it is, so that people understand that when they're out and about, and they see a Sunflower that they know this individual needs just a little bit more time and patience.

Peta Hooke:
I agree with you, but I also think there's still stigma with having a disability. I know that a lot of people that have hidden disabilities sometimes choose not to disclose, because they feel like they might not be accepted.

Paul Shriever:
Then it becomes a choice as to whether or not you disclose it. So you either wear it, and say to people, "I've got this condition, please consider me," or you don't.

Peta Hooke:
I think also there needs to be an emphasis on the people that they're interacting with, that they build a space where they, that person feels comfortable to disclose that they have a disability.

Paul Shriever:
Do you have any advice or coping mechanisms that you've used along the way? And can you share them?

Peta Hooke:
I mean, there's very basic things like making sure that you don't overdo it, make sure you manage fatigue. For me, fatigue management is very important, making sure I get enough sleep, making sure I educate people around me on how I can best be helped so I don't always have to do things independently. Like for example, just pulling a chair away from the table, is really helpful for me and makes me feel like people understand my disability. As far as coping, just try and look on the bright side, and think that things will always get better. Positivity has been the key for me in my life.

Paul Shriever:
If you are wearing a Sunflower, what is the reaction you'd like from somebody?

Peta Hooke:
For me, I would love someone to walk up and go, "Oh hey, good for you for wearing the Sunflower. It's such a great initiative," but I know for some people, particularly with Autism, that could be the opposite to the reason why they're actually wearing the lanyard. So possibly just a lovely smile would be good.

Paul Shriever:
If you could ask for one thing as a result of the conversation today and sharing your personal story, what would it be?

Peta Hooke:
I believe that people should always try and set their own goals, according to who they are, and not what their disability or their diagnosis tells them that they should do. Don't let anybody else define you. You are the only one that can define yourself.

Paul Shriever:
Peta, it's been a pleasure to speak with you. Thank you ever so much for your time.

Peta Hooke:
Paul, it's been an absolute delight. Thank you so much for having me.

ch for having me.
← PREVIOUS POST NEXT POST →