• Peta

Trina Thornbury: You have to learn to laugh with and at your disability.

Trina is a hard worker, wife, mother and has Cerebral Palsy.

Trina has been accomplishing goals and proving people wrong since she can remember. Defying the experts, learning to feed herself, talk, walk and learning to drive a car.

Speaking of building resilience and overcoming low expectations Trina speaks about the importance of being able to laugh at yourself and her disability.


Links to checking your website accessibility:

  • https://www.w3.org/ - this site is the world’s standard; reviewed regularly and written by the W3C Advisory Committee

  • https://www.digital.nsw.gov.au/delivery/digital-service-toolkit/resources/accessibility-and-inclusivity/simple-accessibility-checklist

Connect with Peta:

Instagram @petahooke

The website: www.icantstandpodcast.com

Email: icantstandpodcast@gmail.com






 

Episode Transcript:


Peta [00:00:02] Hello and welcome to the I Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peter and I'm your host. I have cerebral palsy and I love to answer your questions. If you'd like to ask a question for a future episode of the podcast, there are three ways you can get in contact with me. One by Instagram. My handle is at @petahooke spelt Peta Hooke.You can send me an email icantstandpodcast@gmail.com or you can contact me through my website, which is icantstandpodcast.com. Okay. Without any further ado, let's get into it.


Trina [00:01:05] My name is Trina Thornbury, and I am 37 years old. I'm a front-end developer. I'm married. I have twin girls and I have Ataxic and Spastic Cerebral Palsy.


Peta [00:01:22] So how is your cerebral palsy present in you?


Trina [00:01:27] So the spasticity is mainly in the right side of my body so this stiffness in my hand and my leg and also in my speech, I can walk, but I do get tired very quickly. Like when they see me walk, it's very predominant. You can see that I walk different to others. I always joke and say that I walk to my own beat. The beats off, but I still walk to my own beat.


Peta [00:01:57] It's funny, I feel like my cerebral palsy comes out really strong when I'm tired as well. Also, when I've had a drink, my goodness, I feel my cerebral palsy so hard.


Trina [00:02:08] I really? See I'm the opposite. So when I have a glass of wine, the muscles relax. And so the speech is clear. The walk is smoother. But then there's, like, a tipping point. If I have an extra glass of wine, then it's really affacted.


Peta [00:02:26] I think most people are like that aren't they?


Trina [00:02:29] Yeah.


Peta [00:02:31] Because we're obviously born with cerebral palsy, like we obviously don't know any different. So what was it like for you growing up with cerebral palsy?


Trina [00:02:39] It was tough. My Mum, god bless her. She's she is single mum. Four kids. The youngest with Cerebral Palsy. And we did roughly 12 years of constant therapy. So hydra, speech, occupational and physical therapies. My family is very supportive and they push me to do my therapy and keep on top of it. I still went to school, but every morning I could do certain things in the afternoon. I had to do certain things. My household was decked out to cater for those different types of activities, to help me stretch my muscles and focus and be on top of my balance and speech. My siblings, they actually never treated me like I was delicate or I was sensitive. They gave me a lot of tough love. Besides family making making friends was a little bit hard. Once I made one friend and that didn't happen till year three.


Peta [00:03:53] Wow.


Trina [00:03:53] yeah, but. But once I made that one friend, others were willing to be my friend. You think, well, I've got this disability, it's going anyway, I can't change it. So I just laugh at it and laugh at myself for having it. We always joke around the house saying, You know, my husband will have proiten shake. It will hand it to me. "Here shake this for me". It's a type of humour that we have a whole family. You can't let your disability win. Take Control, just have a laugh because it's going nowhere.


Peta [00:04:40] You say, don't let your CP win? You mean like other people's perceptions? Or do you mean the actual physical challenges that cerebral palsy brings you?


Trina [00:04:49] The actual physical challenges. Because sometimes, like when you get in that funk and you like, for example, if I slipped or if I spilt something because I'm shaking too much, or if I'm trying to do something with my girls and I can't do it because of my disability, it does drag you down into that funk. Yes. I try to lift myself up tomorrow is another day. Keep going. Being 37 now. I wish I could tell my youngest self about acceptance and realising what my cerebral palsy is because CP can affect people in so many different ways. There is no written textbook, so knowing what I know now, I wish I could tell my younger self. Trina, this is going to happen, you need to accept it.


Peta [00:05:57] Looking from the outside in, you certainly have clocked life from my perspective. Like I'm not going to assume you're happily married, but hopefully you're happily married. And. Yes. So what has that been like for you sitting here now at 37?


Trina [00:06:13] Well, yes, I am very happily married. We've actually been married for nine years, together for 11. And people ask me then, who are you? And I'm still married and my husband and blah blah blah. And then when I say I have twins, then they really take a step back. How do you manage that? A lot of that drive is from my mother. She. She was told very young, like when I was very young saying, you know, your daughter, she won't be able to walk, she won't be able to talk. She won't be to fed herself or drive a car or do all these things. And my mother said, no. You're wrong. I'm going to give my child every opportunity to have those things and so accomplish feeding accomplished, walking the accomplished communication. And then yeah, I just keep raising that bar because I stop now.


Peta [00:07:26] How did you find high school? Did you feel like? I found primary school very accepting. I had lots of friends very quickly. How was your transition from primary school to high school? Because I speak to so many people and they say primary school was easy, high school was difficult. How was it for you?


Trina [00:07:47] Pretty much the same. So small friend base in primary school. And we carried a cross into high school because there was bullying. I already had that friend base. They protected me quite a lot. Simone. She got into this fight for me because they were trying to antagonise me and beat me up. and Simone stepped in and she delivered the punches for me. So it was having this type of friend who is willing to stand up and protect you because you can't be yourself. I will never forget that. When somebody tries to mimic and disable turning their voice or walking, it hurts. No matter how old you get, things like that will always hurt. It can feel like the world's strongest person. And then something like that will knock you off your feet. you just could take a deep breath and just say that's on them. I've got no problem with who I am or my disability. They've got the problem.


Peta [00:09:08] As a website developer, what is website accessibility.


Trina [00:09:13] Website accessiblity about making your website accessible to those with a disability. It's for every disability. They need to really make sure that, for example, your colour contrast. You've got large buttons for those who have restricted hand skills and cognitive as well. So you can make sure that things like text to speech is in correct order and yeah is it looked at to think about and is forever evolving.


Peta [00:09:56] For people who don't know what website accessibility is, a great start is to think about Instagram and if you follow people with disabilities on Instagram, you will notice we we always in best practise. I mean, we sometimes have off days, but we always in best practise put captions on our content and we also put photo descriptions. That's a form of website accessibility. But I can't over state how important website accessibility is.


Trina [00:10:30] It really is is extremely important. So let's break it down. 15% of the world's population has some form of disability and the majority of our lives online. So we put social media, education, entertainment, even our careers online. So we need to develop websites for all people. No exclusions and no exceptions.


Peta [00:11:03] For people who might be listening, sitting here thinking, Oh my God, I have no idea if my website accessible. Do you have any recommendations of where people start?


Trina [00:11:15] The software's out there. They can evaluate your site and break it down to our accessibility needs, like colour, broken links, alternate text on images. There are a lot of products out there.


Peta [00:11:36] And also most, I would say I would hope most if not all, website developers now. That's just part of the service. So when you get your website website updated, please please always make sure you request for website accessibility. Going back to relationships a bit. So why do you think people with disabilities are so misunderstood in regards to romantic relationships? Because it's such a common thing.


Trina [00:12:07] Mhm. So there's a few things. One is society puts this in a box, they put it in a box, they toss us aside. Let's leave them over there and continue with our lives. They don't know how to talk to us. They they're afraid that we're going to get sensitive or upset if you ask questions. I actually like people asking me questions about my disability because I'm educating them. Societies tends to see the disability first. And that's why it's so hard. I've had some horrible dating experiences. I, for example, I am in my twenties. I'd go out to a nightclub and I would met a guy and he would assume that I was drunk. And then the next day when we meet up for coffee, you can see that when you walk up to them that look that I have of disappointment and and shock and disgust is kind of like, oh, she actually wasn't drunk last night. That's her. And then he is sitting there and having that conversation, that awkward conversation. And you can see he's thinking, oh, he's thinking and strategizing on a way in getting the hell out of there. Mm hmm. And that has happened to me so many times. One guy we were dating for. Eight, nine months. And he broke with me and it dawned on me that I was his closet girlfriend. We we never went out in public, never went to the movies, never went to dinner. I never went shopping. I never met any of his friends. To be that ashamed to have a closet girlfriend, because you're afraid that society's going to judge you because you're dating somebody with a disability. That's utterly disgusting. So I gave up. I'm done. I can't I can't keep on doing this myself and trying to expose myself to love. And then, of course, out of nowhere I end up meeting a guy, who is now my husband. The best thing about meeting him at the gym or in public where there is no no misunderstanding lets call it. Is that he knew that I talked differently and walked he knew that I had a disability so that that guard was already taken down. I remember our first date. We went out to the pub and we just went from one pub to another having a drink and we spoke for 11 hours straight. And we talked everything, including my disability. He asked the hard hitting questions, what it is, how it impacts, what's my quality of life. And I was pretty confident that the score was going to stick around because I never had a conversation with a stranger before.


Peta [00:16:06] That's really lovely. What was it like being a mother of twins?


Trina [00:16:12] Like all parents were always tired, always juggling so many things but when the end and disability be on top it really affects. So the talking the the shakiness the falling that happened quite often. And then I actually started having seizures as well because I was just pushing myself so much into juggling the twins as well as work. Yeah, it was it took a toll. But now they go to six and they are very independent six year olds. The pregnancy was interesting. I Was very huge. And I am a very small person. And then of course, when I had the girls that were born premie 31 weeks, I had renal failure. My body wanted to give up. I was in ICU for ten days I believe. I didn't meet my children until day four, so I wouldn't let you leave. Yeah, it's been a rollercoaster, but I would do it again in a heartbeat. It is a very full on job, but my girls are all happy and healthy and strong. They were fighters when they were born.


Peta [00:17:57] As are their mum as far as I can understand. So what do you love about having a disability?


Trina [00:18:06] Yeah, I think the parking is the best. School holidays, Christmas. Parking is a nightmare for everyone else. Not for us. All jokes aside. I think the best thing about this really is a level of compassion towards people, not just with those with a disability, but everyone in a deeper understanding with their struggles in life. Not just physically, emotionally and mentally. And you tend to having a general appreciation towards life and how precious it really is.


Peta [00:18:51] And is there anything you don't like about having a disability?


Trina [00:18:57] I'm pretty sure I'm speaking for everybody. And that is the feeling of exclusion, rejection and constantly being identified as a disabled person first not as somebody with a sense of humour at all. What have you. That is the thing that like most.


Peta [00:19:26] What do you hope it would be like for disabled people in the future?


Trina [00:19:30] We need to bridge that gap between graduation and employment. Try and find a way where working with people with disabilities is the norm. That's something that I'm very passionate about. I think the one thing that I would like to see is also for people with disabilities to accepting in loving themselves. It all starts with those conversations the courageous, the uncomfortable be, the strong one and and get educated.


Peta [00:20:16] Been so insightful during this whole process. Thank you so much. I've thoroughly enjoyed talking to you.


Trina [00:20:23] It's been fantastic. Thank you so much, Peta.


Peta [00:20:28] I just loved that chat with Trina. I never really know where my chats are going to go and that was a really great conversation. I hope you enjoyed it. If you did, can I ask you to leave a writing interview? If you listen on Apple Podcasts, or better yet, please share me on social media. I'm very, very keen to grow this podcast and continue educating what it is like to live with a disability. So until next week. Have a good one, guys. Bye.