“People judge before they stand back and think, you know, there might be another reason for, for a person behaving the way that they do.”
Peta Hooke interviews Helle about Pome disease and some of the everyday challenges Helle faces from getting dressed, to speaking to getting around. Pompe disease is a rare, inherited, and without treatment, often fatal muscular disorder.
Pompe Disease is caused by a deficiency or total lack of the enzyme acid alpha glucosidase. This enzyme is responsible for breaking down excess glycogen which normally accumulates in the muscles. For more information about Pompe disease, please visit https://australianpompe.org.au/find-out-more/
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Peta Hooke for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Peta's I can't stand podcast here and Sandee Facy's music here.
If you want to share your experience, get in touch with us by emailing us here.
Transcript:
Peta [00:00:00] I would like to acknowledge the traditional custodians of land and waters of which this podcast is recorded, especially to those with a disability themselves. Hello and welcome to Sunflower Conversations, a podcast where we explore the experiences of people with hidden disabilities and what the sunflower means to them. My name is Peta Hooke. I'm your host. I have cerebral palsy as well as other non visible disabilities. Every episode we're going to be chatting with a different sunflower wearer to understand what it's like for them to identify as somebody with a hidden disability and how people can best support them in different circumstances. Let's add a little bit of sunflower sunshine to your day and get started.
Helle [00:01:04] My name is Helle Borup. For me. People can see that if you met me, anywhere, you would think that there was nothing wrong with me. You can't. There's no obvious sign, except to say that there was anything wrong with me. At the moment. My teeth is quite a big giveaway, but most people put that down to, poor dental hygiene, not thinking that there might be a reason behind it. And I speak very slow and sometimes with a slur. People judge before they stand back and think, you know, there might be another reason for, for a person behaving the way that they do.
Peta [00:01:54] Yeah, I think so many people are busy these days and they don't have the time, or they don't have the insight to think and put themselves in your shoes, and I certainly experienced that as well. So when you walk out the door of the morning, what challenges do you face as a result of your disability?
Helle [00:02:15] Speech is one. So I can't speak very loud. So if somebody says, oh, just yell out, well, that's not going to happen for me because I can't. I get very tired very quickly. So it feels like I've got a potato in my mouth and my tongue just grows too. Not being able to articulate myself very well. I walk with a very sort of funny, gated kind of walk. I have trouble getting up and down stairs. So I generally like to know where I'm going and how I'm going to get there before I even go. The little things I'm putting in my hair up is, is an issue because I can't lift my arms above my shoulders, so breathing is is a big difficulty. Not that there's anything wrong with my lungs, but the, muscles that are making you breathe and pushing your chest up and down. Mine are not working very well, so I'm very, very quickly out of breath.
Peta [00:03:21] So do you find also on hot days and things like that. It's a little bit harder. Does the weather affect you?
Helle [00:03:29] These last couple of days, I haven't left home.
Peta [00:03:33] So when do you choose to wear the Hidden Disability Sunflower?
Helle [00:03:38] If I go out on my own. I've always got it on, and I generally have it on as You know, the ones on your wrist. And I've also got a lanyard. It's physically a little tag that I've got on that's got my husband's name and contact number on it. If I fall down. I can't get up by myself. I have to get somebody to help me to get up.
Peta [00:04:07] So is the sunflower a form of safety for you? Is it just to communicate to other people that you might need a bit of help? Why do you choose to wear it?
Helle [00:04:17] I'm hoping that most people, over a period of time will become familiar with what it is. So if I have an episode, whatever that might be, when I'm out, that there is somebody that triggers in their brain, that that that person needs help, it's not because I don't know how many times I've walked out of a cafe or a restaurant and go into my car and people are actually judging me, thinking, should you be driving? You look as if you're drunk. You know, I don't eat. I've gotten a feeding tube, so. You know, that's one of the little pleasures I can do is having a bit of a drink, whether that's a coffee or whatever. So I'm hoping that sunflower takes off even as much as if somebody recognises that you're wearing it. That I will understand that you might need help. You might not.
Peta [00:05:12] And I think that's why these conversations are so important, because it shares people's different perspectives. It's really great to hear how the sunflower has helped people, and we all hope that in the future it's more widely recognised. How do you feel when someone does understand what the sunflower is and asks you if you do need assistance?
Helle [00:05:35] We were in Sydney, for the, World Cup in soccer to support the girls up there and the stadium staff there were amazing. I mean, it was a bit obvious because I was in a wheelchair because I had a really bad day. So that day was a no walking day for me. Once we got into the stadium, I went to the toilet by myself. My husband's always close by, but I went in to talk about myself and I was walking. And the lady said to me, oh, I can see you've got a arm band on for hidden disability. Can I be of any assistance to you? And just a simple thing, like a lot of bathroom doors and that heavy. Then I can actually open them. And if I managed to push it open to get in, I can't pull it open to get out. So it's just, you know, silly things like that. And, and then lady said, well, I'll wait, until you're finished and I'll make sure you get out. And this year I go to the, Australian Open every year. And when I walked in through, I was a bit hesitant because I did it on my own for the first time in years. And I had my lanyard on and my arm band, and there was some helpers or volunteers there. And when I saw my lanyard and my wristband, they asked if they could help me get to my seat. So they got a wheelchair out and they wheelchaired me from the front. Literally 50m inside the front door to where my seat was. Gave me a card and said, so just ring this number when you're ready to leave and we'll come and pick you up, and I did.
Peta [00:07:29] The commonality of the conversations I've been having with people who wear the hidden disability. Sunflower is how kind people can be. In in response to the recognition. And I think that can be really powerful because as we know, the world can seem pretty ugly at times, particularly online. And it's lovely to have that physical recognition and to remember that there are kind people out in the world. And I think the sunflower really encourages that in people.
Helle [00:08:01] I was talking to the tram, volunteer on the on the platform. And he obviously could see that I was struggling because there was obviously so many people coming and going, and I had to get on the, on the tram, I had my walking stick, and the lady had taken me to the tram in the wheelchair, so that was all good. But the guy at the tram didn't know anything about it. And we got talking and and I showed him my, my two, hidden disability, sunflower items, and he said, we don't know anything about that. And we are ushering people on and off. Thinking that people are slow or not complying or, you know, that there could be multiple reasons why people are doing what they're doing. Just a simple thing, like us being educated with what that symbol means would make it so much easier when we see somebody that's... and also for us to maybe get other people to understand that that person needs help and space.
Peta [00:09:13] For those people who are listening, who may not have a disability and are unsure how to help. From your perspective, how would you suggest that they approach you in offering help?
Helle [00:09:26] I'm a bit ashamed to say that I haven't been, living with a disability all my life, and I think the Helle, that was six years ago. Don't have then. Wouldn't have had the same understanding as what I've had today. And that doesn't sit well with me. I wish that there had been lots of times where I had been the one that said, can I help you? And I think that that's all people need to say is, do you need any help? Are you okay? I think it's really as simple as that.
Peta [00:10:01] And I think that's where your insight can be really powerful, because often I think the non-disabled population don't realise that they can become disabled. It could be in their future and it could be them. So if they do want to offer help and offer kindness, you're right. It's just simply asking, would you like some help? So you've spoken about wearing the sunflower at events. Is there anywhere else that you tend to wear it, or do you wear it every time you leave the house?
Helle [00:10:32] I go to a public pool to do my exercises just because I can put on a bathing suit and bodywise I look normal, and I can walk to the water's edge, and I can get in and I can get out. That doesn't mean that I don't have any issues. It just means that at that particular moment, you can't see that I have. And I think in places like that, it would be gold that people are aware that if there is somebody that might need help. But that's just a simple way of showing that if there is anything, all you need to do is ask, you know, can I help you?
Peta [00:11:10] Sounds like we need to have a swimming cap or some bathers made with the hidden disabilities sunflower on them.
Helle [00:11:17] I just know that a lot of people with muscular disabilities. That's that's where we do our exercise. Because the water makes you. Able to do things that you can't normally do when you have to support your own body. So I think places like that, it would go for gyms as well. I'm sure there's people out there that go to gyms and you know, I think it's important to get at that, even though if you live with a disability, you do participate in some of those mainstream activities. It's all fine and well to have a ramp. Well, that's not always all you need.
Peta [00:11:58] And that's another episode for Sunflower Conversations. Don't forget, you can always connect with the sunflower between episodes either via our website HD sunflower.com/au via our Facebook hidden disabilities ANZ or via Instagram hidden disabilities_ANZ. Those links will also be in the description. Thank you so much for listening. Until next time, have a lovely sunflower day.