Nina Crumpton: Confidence and resilience is key when living with a degenerative disability
This episode has everything!
Serious chat about disability housing, some very insightful, helpful tips on how to live with a degenerative disability and the most amount of laughter ever on a podcast - well at least for this podcast.
If you want more Nina:
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You can ask Peta a question for a future episode of the podcast via:
The website: www.icantstandpodcast.com
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast, the podcast answering your questions about what life is like when you have a disability. This has to be one of my favourite interviews I've ever done, namely I, to be honest, completely lost it. Halfway through this episode, we giggled all the way through. So I hope it brings you as much joy as it brought us. If you'd like to ask me a question, there are three ways you can do so. One. You can follow me on Instagram. My handle is @petahooke. You can email me at email@example.com. Or you can contact me through my website icantstandpodcast.com. OK. Without any further ado, let's hand over to Nina.
Nina [00:01:03] Hello, everyone. My name's Nina Crumpton. I work as a community liaison officer and I have a disability. Obviously, I have primary progressive MS. I was diagnosed back in 2013.
Peta [00:01:20] So do you view yourself as a disability advocate, Nina?
Nina [00:01:24] I think I've become a disability advocate by default, almost. I think that. It's almost a moral obligation when you have a voice and are able to speak for those that don't have a voice, that it becomes an obligation to use that voice for good. I have a really strong sense of justice or injustice, and I feel really most applause when I have a chance, a challenge to fight for what is right. I've only been disabled myself for eight years now, and even in that short period of time, I've noticed that. We still are not. Included fully in society, from the workplace to the community at all levels. That just doesn't seem to be the progress that you would expect in 2021 100 per cent.
Peta [00:02:23] I think, you know, even from the fact that when you talk about diversity, inclusion, our minority often isn't even spoken about or considered.
Nina [00:02:35] Not it isn't, it isn't and yet when statistics show that one in five people have a disability, something really is wrong. I started working in the NDIS space about six years ago. I'm loving it. I really am.
Peta [00:02:52] Oh, that's great to hear, and we need as many of you as we possibly can, so thank you on behalf of the community. Like, seriously, as you know, there's a lot of work that needs to be done, including in disability housing, which I know you're very passionate about. Why is this aspect of disability life so important to you?
Nina [00:03:14] That's a really good question, so I was brought up in relative poverty. I lived with my single mother and she had a severe mental illness, and I grew up on a housing estate in Wollongong. And we had absolutely no extended family support at all. It was just me and mum. By the time I was 16, my mother's mental illness had deteriorated to such a point that it wasn't safe for me to live at home, so to avoid getting caught up in the foster system, I chose to move into a room above a hotel in Wollongong. I was 16 years old, so hotel in Aurora, I lived in a room above there for probably around three to four years. It was an education. It might be very straight, straight, straight walls, I should say, but I lived with sex workers, people who have an active addictions and I didn't have a choice. I didn't have a choice about where I lived. Circumstance led me. There wasn't certainly something I would have chosen at that point in my life. And it's in the same realm that people with disabilities don't have the choice about where they live. They really don't. So social housing is one option that people with disabilities have. And often when you are on a low income, that may be the only option that you have. Where are people with disabilities living still at home with their parents still in group homes? Unsuitable, unmodified housing, the NDIS came along, and they in their infinite wisdom, have brought about a big change and it's an emerging market, so it's specialist disability accommodation. And it's. A package of funding that is given to people with complex needs so that they can move into a new purpose-built accommodation and fully have choice and control, just like the NDIS promise to live an ordinary life in the community with the hope that in generations to come, this integration into the mainstream community will lead to greater opportunities both socially and economically for them, and thereby reducing the financial care burden that they may place on the NDIS.
Peta [00:05:50] And for people who don't know what can specialist housing look like?
Nina [00:05:56] Oh well, there are two options. One, you can use the funding to purchase and own your own home. That's a very, very much an emerging market. I wouldn't say a lot of people have gone down that route yet, but you can use your funding to come to providers like all SDI Shameless plug. And we have purpose-built apartments in Wollongong and Greater Sydney that are integrated into mainstream unit blocks close to public transport. They look just like any other apartment building. You would not know that they are disability-specific housing.
Peta [00:06:37] They look quite beautiful from the outside too.
Nina [00:06:41] At the level where the property is being built, NDIS participants can choose their own paint colours tiling that can really have a say as to how the design will look. So all of those modifiable features and then we bring it down to the personal and try and make that home, that property feel like a home. That's the ultimate aim.
Peta [00:07:08] And that's fantastic because that just humanises a person with a disability even more, because I think in the past there's been such prevalence of like, this is the disabled stuff over here. It does its job, but it's bloody ugly. So don't expect it, you know, for you to love your home because a lot of disability stuff in the past has been for the elderly. Now, as a person sitting here at 31, I don't necessarily like the same things as a 75-year-old. So having that choice and control and being able to customise your house not only for your needs but also for your tastes just really must be so empowering to the clients that are going into these apartments.
Nina [00:07:54] It is. It really is. It's when I look at the property that we have in Thomas Street, Wollongong, Hannahville, I just get shivers when I see it because it looks amazing.
Peta [00:08:08] And, you know, I think it really goes to show how hopefully the community is starting to really recognise that people with disabilities deserve that high level of living. You know, we're not that thing in the corner that people want to stick away and not think about. We're actually part of the community. I'm just like everyone. We deserve to have a beautiful home.
Nina [00:08:30] I couldn't agree more. I do find, though, to be honest, that when I talk about SDI housing. Sometimes people in the community, they get jealous, they say, well, why should why should a person with a disability have a million-dollar unit in Wollongong when I've worked all my life and I can't get that? It's still not quite there,
Peta [00:08:57] and it's a good point, I think. There's such a dichotomy with, you know, having this great support for the NDIS, and yet we're still not able to live a full life. That person still isn't part of the community. They are still able to be employed, and there's still that ugliness that I think we really need to manage. So what do you say when somebody comes up to you and says that person doesn't deserve that sort of housing?
Nina [00:09:33] To be quite blunt, I say, would you like to swap your fucking life for this? Would you like to? If you take their disability, you can have a multimillion-dollar unit. Would you really? And then you wouldn't have it, you wouldn't have you. Most likely, you wouldn't have your job. You may lose friends. You will lose a lot of opportunities. It's a trade-off. And funnily enough, they don't seem to want to take up that offer.
Peta [00:10:04] No, it's all very funny. They all want my disabled parking spot. But I'd say here, I'm more than happy to give it to you. Yeah, got no problem. You have a mess, as you mentioned before. Now, I don't know a lot about MS. I know the basics, but can you tell the listeners and me what MS is and how it affects you?
Nina [00:10:28] OK, so Mars is a neurodegenerative disease, and it affects the central nervous system. It's progressive. Nobody can predict how far you will progress, but you can have issues with mobility, incontinence, fatigue, loss of vision, cognition commission would be one of the most probable reasons that it would you would not be able to continue with employment. For me, fatigue would definitely be one of my most debilitating symptoms and how I manage that, quite frankly.
Peta [00:11:05] Drugs the legal kind could hope on. (laughs)
Nina [00:11:10] Yes, the legal kind. (laughs) So every, every morning I take the SATs, so don't you? You want me to start again Peta? Oh. Every morning I wake up, and depending on the day, my speech could be slurred. But definitely the cognitive enhancing drug. I will explain what happens when I take the modafinil, so it's designed to speed up the impulses in your brain, the nerve impulses. And when I take it in the morning, I'm slurred, everything's grey. And when I take it 20, 30 minutes later, it's up to the colours in the sky. The ability for me to multitask and think my speech becomes ravenous.
Peta [00:12:15] Wow.
Nina [00:12:15] [nina luaghs] I have, I have, extreme energy. [both Peta and Nina laugh).
Peta [00:12:15] Did you take a double douse today? Oh, my god. (both Peta and Nina laugh).
Nina [00:12:15] Yes. I did so I would be ready for you. (laughs).
Peta [00:12:15] Sorry this is so unprofessional of me. (both laugh)
Peta [00:12:51] So your energy is completely infectious. Have you always been brought in bouncy? How much of this your personality is the modafinil? How much of it is just Nina?
Nina [00:13:06] I've always been a confident person. Absolutely. My energy has been damaged by the MS. So, yes, I've always been this way, but I think since I have. Become disabled. I've realised a secret. When you roll into a room, don't tell me that people look at you and they have that feel like, oh fuck, that could be made. So you automatically become the other you never quite fit in in any situation, whether it's work or the community, that's always you just always sitting on that outlier range. So I think I think you've got to be kind of like lights, camera action. You've got to be hone that confidence. You've got to be the broadest colourful peacock to overcome what they see of the wheelchair. Tell me I'm wrong.
Peta [00:14:09] I completely agree with you, I think when you're you're defined by a disability, by strangers, I'm constantly trying to prove. From a visual perspective that I'm not the generic person in a wheelchair that I think I am, which I know probably sounds because nobody in a wheelchair is the same. But I think society just launched is seen as one homogenous group. But in actuality, we're all individuals. We all have different personalities. And I really enjoy proving people wrong.
Nina [00:14:48] I think on the Sun, you really have to be twice as good as an able-bodied person to be taken half as seriously.
Peta [00:14:58] What do you wish people better understood about disability?
Nina [00:15:02] That disability is completely and utterly a normal state of being. It's just a normal variant. It's just its part of being human. And instead of excluding us from the mainstream, include us. Otherwise, you lose the potential that we have, the potential that we bring to all situations.
Peta [00:15:29] I don't have a degenerative disability, this is sort of me as far as I know for the rest of my life. How do you go about recognising that this will change for you? How how do you get comfortable with that and sort of live every day in the back of your mind that your arms could change tomorrow or it can change in a year's time?
Nina [00:15:55] I look forward, I don't look back. I've prepared for a life with M.S., I've prepared for the degeneration from the point that I was diagnosed, so when I was diagnosed, I began to gather the equipment, start modifying my house, tapping into those community networks, preparing for that. So was, I know that I'm prepared. I don't live in fear. Yeah, but also I think resilience is really important and that's a life skill that everyone should be taught. And I think that there are some really key components of resilience that you need to tap into social connexion. So I think maintaining friendships and networks with other people with disabilities are really vital. I think contribution to society is really important. It stops that self-pity and dwelling on. The things that I have lost might not be so comfortable. I think you've got to be okay with the loss of control. You've got to be able to just roll with it, so to speak. You've got to have some key coping skills. So emotional regulation and knowing how to practise self-care, how to look after yourself. Confidence that you can cope. You can cope because you can. You definitely can. And I think you've got to be tough. And I always use that term. You've got to be hashtag 'unfuckwithable'. But a lot of people that I've met have been beaten down by the realities that come with having a disability, the social isolation, the exclusion, the loss of employment, the loss of friendships, all of those types of social issues. It breaks them down rather than empowers them to stand up and fight.
Peta [00:17:52] What advice would you have for anybody that's just been given a diagnosis? What's something that people should know moving into this next chapter of their life?
Nina [00:18:06] Well, that's a good question. So what advice would you give? I would say first, you need to practise acceptance that this is your new state of being. And that might come about gradually. That might come about through engaging with a therapist. But getting your mind right is key first. That's the most important thing. And then I would say that I think you need to start looking at the resources that you're going to need and tapping into the networks. So if you're going to. Needs India's support, it's researching that getting involved in Facebook groups, educating yourself education is power and nobody can take that away from you. Embrace your new state of being and realise that this is not going to change. You are. You have a disability. You are now disabled. This is your life, and everything that comes with it has to be accepted and make the system work for you.
Peta [00:19:13] And you know what most people we know are going to become disabled, whether they like it or not if they're lucky to live long enough to become disabled, right? So in some ways, I feel quite empowered in the fact that I do have a disability so early on in life because both of us have learnt to adapt. We both live very full lives. I really do think that while, yes, having a disability can be super, super challenging, and you know what, sometimes I would really like to swap it and be able to walk, you know, 10 metres. But in other ways, I really do feel that we are living life with our eyes fully open and we know what's ahead of us and we know how to deal with it.
Nina [00:20:04] I love that saying, Peta. I really love that sign living with your eyes wide open. I couldn't I couldn't process that better. That's exactly what it is they're aware of, of what's coming, and it's taught you to be adaptable and resilient from the get-go. So you and I Peta are used to rolling with the punches and. Whatever it, whatever comes next, we can handle it.
Peta [00:20:34] For those who would like to know more information about you, Nina, where can they find you?
Nina [00:20:40] You can find me on Instagram at @Wheelygoodlife. You can also find me on YouTube and also on Facebook, It's a wheely good life, also.
Peta [00:20:52] Nina's stories of making her tea are like the highlight of my day.
Nina [00:20:58] I drink a lot of too a drink so much tea I could piss tea. (both laugh)
Peta [00:21:07] So finally, what do you love about having a disability, Nina?
Nina [00:21:13] The fact that. When I became disabled, I lost a lot in life and then I had to reinvent myself, so I became like a phoenix coming back from the ashes. The friendships and community that I've built, particularly in the MS space, the sense of purpose and passion that I now have from working in the disability sector. I have something to wake up for every day, and I just I really love that. Plus with NDIS, and you're going to think this is a bit cuckoo, but people say, Oh my god, I couldn't use support workers. And then say all this, I'm so ashamed, I don't want to give up my laundry, I need to remain independent. Hello, does Kim Kardashian worry about that? Does Madonna go to the local store to do his shopping? No, she delegates that out, and then that allows her the spice to remain just as fabulous. I'm just living
a Madonna life. That's all.
Peta [00:22:14] You're just the babe with the mobility aid. I love it. Well, thank you, Nina, for being here. I haven't laughed this much in ages. I've thoroughly enjoyed talking to you. Thank you so much.
Nina [00:22:30] Thank you for having me. Peta and I have loved the laughter just as much.
Peta [00:22:38] I hope you enjoyed my interview with Nina. I think you probably gathered that we enjoyed it. If you'd like to leave your writing and review, you can do it on Apple podcasts or you can share the podcast with a friend. It all helps the podcast get found by more people. Thank you for listening, and I'll see you next week. Bye.