Join Peta as she speaks with John McKenna, a lifelong disability advocate, about the critical role of support coordinators in the disability community. John shares his personal experiences and emphasises the importance of truly knowing and connecting with the individuals they support. This episode delves into the challenges and triumphs within the NDIS system and highlights how genuine, invested support can transform lives.
Pick My Brain: https://www.pickmybrain.world/
Palliative Care Victoria: https://www.pallcarevic.asn.au/
Valid Easy Read Palliative Care: https://valid.org.au/ppalliative-carew-easy-read
Valid On Advocacy: https://valid.org.au/advocacy/
Connect with John:
Website: https://johnmckenna.com.au/
Instagram:https://www.instagram.com/johnomckenna/
Connect with Peta:
Instagram: @petahooke
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 Peta. I have cerebral palsy and I'm your host. I'm so excited to have John McKenna on the podcast today. Our conversation sort of goes everywhere, and it just illustrates John's experience and expertise and what life is like when you have a disability. He's been an advocate in this space for many, many years, and I jumped at the opportunity to speak to him. So without any further ado, let's get into it.
John McKenna [00:00:52] My name is John McKenna. I've got a condition called arthrogryposis multiplex congenital. Basically, I use an electric wheelchair for mobility, and I'm sitting here in my ex podcast studio because, as you know, Peta, I used to read a podcast years ago and it's a real hoot to be with you today. Looking forward to a great conversation.
Peta [00:01:14] It's a pleasure to have you here, John, particularly as someone who has been a pillar in the community for so long and is a podcast of themselves. So you're pro I'm sure I don't need to hold your hand today. I like to start conversations starting from the beginning, I suppose. So thinking about when you grew up and how disability was framed to you as a young person, what expectations did you have for your life, or how did you feel about being a disabled person? Was it a consistent thought for you or was it something you ever thought about?
John McKenna [00:01:51] I'm one of five kids, brought up in Melbourne, and I'm privileged to say I've got beautiful parents and siblings. So at dinner time and breakfast time. Not. I was just one of the family. But obviously there are moments such as education, and leisure where became quite obvious. So for instance, I started off at a special school and that was because, obviously in those days, that was really the only option because of the facilities that were available. It was no big deal having a disability as a kid. Apart those two areas, when it came to education and perhaps activities, I laugh a lot with my dad and still remind him and his siblings things like respite. My parents actually did go away on holidays and put me in a, sounds awful into the institution. But and I often reflect back and say, that's a bit unfair, but I also can sort of see where they were coming from. They couldn't go surfing on to a beach with a kid in a wheelchair. Now, I know you could say, oh yeah, I yeah, they should, but you know what? We did it. We love each other. You know, I'm not traumatised because of it. I learnt a lot. And I do believe that with disability there is something called burnout. So Mum and Dad were doing all my care. I had a lot of corrective surgery when I was young, so I spent many, many months in hospital every year. So there's plenty of support needed for my parents who are running a business. And also mum, dad looking after four other kids.
Peta [00:03:32] How long were you in the institution? Was it just purely for respite?
John McKenna [00:03:37] Yeah, just a couple of weeks, that's all. They'd go down to a place they knew were not going to be accessible. I didn't like it at the time. I was a bit sad. That was the only option those days because there were no support coordinators, I couldn't stay in the family home. And people, you know, people don't like the word respite. But back in those days. I've got to keep saying that that's what was needed in so, you know, to avoid family break-ups. It is real. And sadly, it's still happening now.
Peta [00:04:07] Yeah, I have to acknowledge it's a lot of work to have a disabled child. Rightly or wrongly, it's just the reality of what it's like in your parents had more siblings to look after as well. It's it's tricky sitting here as the child, because you never want to feel like you're an imposition, and your parents work really hard to make sure. Well, in my case, really hard to make sure that I never felt like that. But in the end. I was aware about how tired my parents were trying to help and accommodate for my needs, and now we moved house to a single storey house when I was a little bit older. That certainly helped things, but for sure, I think. And like, I'm only talking about the 90s. I think things could be hopefully a lot better for parents today, starting this journey with their disabled child.
John McKenna [00:05:05] Disability has never been a big deal in my family, and I think that's a summary, which I'm very proud of.
Peta [00:05:12] What did you want to do when you grew up?
John McKenna [00:05:14] Great question. I wanted to be an interpreter because, I, did find the language of Spanish interesting. And I learned that at the school I went to, at Saint James College, which was after the special school. But, John, when you want something, you've got to study it. And guess he doesn't, like study me. I'm not a reader or a writer. And that goes back to my start in a special school where that was never focused on. My first gig started off, hiring out our tennis court at the age of 16. So we'll do that. I also had set up a little dog walking service at the age of 18. And then I guess a big gig with employment in mainstream was working for a company called Sebring's, and they manufactured the first electric wheelchair in Australia actually. And my mum went there to pick up my chair one day. Waiting, waiting, waiting. The phone's ringing. And finally mum said, you need my son here to work. Answer the phones. Because I had this thing Peta,I'm not going to go to a sheltered workshop. I've done the special school. And I'm going to do my best not to go to a sheltered workshop. I respect sheltered workshops to a to a degree. I think that's another. That's a big conversation, of course, about sheltered employment. But for me, it wasn't for me. So I got the job at the, Wheelchair Manufacturing Company and loved it. And from there I am moved up to Bendigo and set up my own business called Independent Living Equipment. So I was the first business based in central Victoria selling medical equipment. I was approached by a pharmacist to buy the business. I then sold it, worked for them and then next gig was Telstra for 15 years worked there, started in a call centre. then I started moving to corporate affairs and that involved things like Telstra's disability Action plan. My time at Telstra really expanded my vision to be aware of people who are blind or have low vision. People who have hearing impairments and to really adopt and utilise and be creative with technology, which really was all about equity and making sure everybody could access telecommunication.
Peta [00:07:45] Technology can be so empowering, particularly for people with disabilities, which we will touch on later on in this conversation. But I wouldn't be doing my job if I didn't go back and touch on your comment about sheltered workshops. Now, obviously that form of employment wasn't for you, and I'd love for you to explain why. But why do you think that that form of employment still has its value?
John McKenna [00:08:10] So when I say I respect it is there mainly for the social aspect, but if people aren't utilising or being allowed to use their skills in employment setting. That sad. I'm loving the self-advocacy that's going on in the employment space, where the managers are aware that there are people who may not necessarily like this job, and it doesn't matter if you've been there 30 years and you seem to be happy, but is that person really being questioned? Are you happy? Would you like to try something different? And this is where funding models and other opportunities do exist. But it just it takes an effort doesn't, Peta, it doesn't just happen. You know, it's a huge topic and you can throw in human rights and respect and people's biases. But for me, Peta where I stayed away from it because I wouldn't be able to go and talk to my brothers and my friends to say I got a job and to say a work in a workshop, and I put plastic spoons in a bag. I wasn't comfortable with that. Let's be honest with technology and cameras and videos and all of this. We are. I'd like to think employment is more accessible now to the world. Once you get it takes a little bit of creativity about silly things up. There's an organisation called Pick My Brain, which is based in America, and we're seeing people from around the world with disabilities who have created a profile, and they actually sell their own time to have a chat with someone who wants to learn about disability.
Peta [00:09:50] I want to talk about the NDIS because I know you were paramount in getting the scheme across. You, gave your professional expertise to the scheme and tried to guide the scheme to get created in this in the, context. We know it today. I'd love to hear about when you first heard about the concept and how the scheme is different to what you first envisioned.
John McKenna [00:10:17] Well, obviously a little bit of background. I was very involved with, DHS, Department Human Services. It was then in the area of ISP's, which means individual support packages. I was approached and they wanted to involve me in the area of recruitment at different levels. So I, along with about eight other people, were approached to, sit on interview panels and that was a real exciting time. We followed up with the NDIS to say, well, these are goals. So I can achieve my life and it's still there, but that I don't forget. They want something in return. So the flag that I was able to live with regards to my goal has been around being employed. But as you and I know, Peta, what are those people who perhaps choose not to be employed, but they still want to have a productive life, even as a volunteer or for further education. I think support coordinators play a really big role in their job in supporting people and like all roles there's some good people doing it and some terrible people who think they're doing it. I'm not picking on Support coordinators but I do want to make a really good point. One thing that really frustrates me with the consulting work I do is where support coordinator hasn't met the person they're supporting. Sorry, but that's a fundamental. If you're going to support someone, go and see them and don't say things like they are non-verbal, because I'll get more angry and and I don't like getting angry, but it just frustrates me that, there's been no connection. You know, I, you know, I'm exposed to that with the work I do. Oh Sorry, but I haven't met Julie yet. You shouldn't be at this meeting right now if you haven't met Julie, it doesn't make sense. So, you know, thank you for my little rant, Ted. Talk.
Peta [00:12:28] It's an important rant, because I think even people who have little, experience or understanding of, disability in the NDIS in general, I think that I would be shocked that people who are employed to guide and support a disabled person can get away with not meeting them and spending time with them and getting to know, you know, the human, that human that they are and what they want to achieve in life. And that's where assumptions come in. And low expectations and those are all the things where disability advocates are trying to break in and for people to better understand. So I totally concur with your perspective. I think support coordinators are so fundamental in the system working, but we have to make sure that they're doing their due diligence and doing their job correctly. I. As a podcaster, I always try and make sure I have varied voices on this show to make sure that disabled life is as illustrative to the audience as I possibly can. Now, I'm not perfect. Sometimes it's really hard to get guests. Certain people aren't comfortable to talk about their disability, and that's totally fine and that's their prerogative. But I have to say, there is a gasp that I don't quite know how to feel. And I think about it all the time, and that is to make sure people who are non-verbal or have intellectual disabilities that choose to not speak or cannot speak in the way that this show, you know, might require them to to make sure that their voice and perspective is heard and reflected in the disability community. And I know that you're really passionate about speaking. Two and for people with intellectual disabilities. And I just love to speak to you more about that.
John McKenna [00:14:33] Sure. I'll throw another word in. You say two and four? I prefer the word. With.
Peta [00:14:39] Better
John McKenna [00:14:40] Because when we say the word with or with the person. And to go back a step when we talk about advocacy, one of my mentors actually taught me very quickly about what advocacy is and the key factor. If you think you could do advocacy work is be aware where you're going to stand. Are you going to stand beside the person? Are you going to stand in front or behind? It is crucial that if we are aware, that person communicates in different ways. Let's take some time out and invest time. That's the key thing. Invest time in knowing that person and how they communicate. It could be spending 20 minutes holding their hand if they are Non-verbal. Say nothing and try to connect. My favourite example is the person who had cerebral palsy. I was the manager of organisation and I got a call one day from the father and he said, I want you to know that my son's had a fantastic day today. And his son Michael, not his real name, but Michael, had a really, really happy day. How do you know? Well, he was a bib, and he normally dribbles a lot, but he's drip. He's he's bib was totally dry. So that means that he had a good day. So it's those little things we pick up on to acknowledge how a person is travelling. And I many, days even, you know, on a regular basis when liaising with consultants and speech pathologist and other professionals, health practitioners, I have to resort back to. Do you know what it looks like when Michael is happy? Do you know what looks like when Michael sad? You got to bring it back to that level, because we get caught up in medication and TV, in screens and all these activities. If you really do your job properly, you do spend time and you might even talk to the person family and get their thoughts. Family. I'm not saying the best advocates always, but if I was to support coordinator, these are things that I'd be doing. I'd go invested hour to sit in the room with that person and connect. And use all the skills that you've learned at university around body language and, be aware of medication, time of day, anxiousness. I know we are all busy and support coordinators and other practitioners have a huge caseload. I don't care if your role is to help a person's life get to know them.
Peta [00:17:35] Another area I know you're really passionate about. Is for people at the end of their life in palliative care. And I naively thought that that stage of my life, when hopefully I don't get there in too much of a rush. But when I do eventually get there, that my disability would be better understood and I would be just like everyone else. Because finally, my disability has caught up with everybody's ageing body and we can all be seen as equal. But I understand that might not necessarily be the case.
John McKenna [00:18:13] When I first heard disability in palliative care in the same sentence, I got really excited because Palliative Care Victoria would exhibiting at a conference in Geelong. We'd like you, said Peta. I was born John, the child with disability. first or baby with disability, then child with disability, and then teenage with disability, and then with adult with disability. But one day I might be a person with a palliative care in bed a the won't talk about my disability. So that label has gone. You know we all are going to die. But keep the choice to control happening and try and see it as. Like I said, palliative care has the image I guess about being a sad thing but if you go to palliative care website and also go back to Vaild, they've put an amazing resource on people's intellectual disability, understanding what palliative care is. It can really change your thoughts on, how it's used, but it's still gets back to the environment. You've got to go and find out those great people who get it and who respect your disability. We see in Victoria disability liaison offices in some of the major hospitals. So that person, ideally, if there is one at that hospital, is a go to person, will help you navigate the hospital system. While you're healthy and alert and preparing. Because let's be honest, Peta, with people disabilities, we are fantastic at organising our lives. If we have that cognitive ability, if we have the cognitive ability, sadly, the people disabilities don't have the choice to organise their lives, but that's slowly changing. You know, we have things like what you would have breakfast, where do you want to go? But that should continue when you go to hospital or become sick.
Peta [00:20:12] You've been an advocate for many years, along with many others that have all created the environment that we live in today. For people who are younger, who are sitting here with a disability, who want to become disability advocates. Do you have any advice for them?
John McKenna [00:20:32] If it's in you to be an advocate. And it might not be disability, it could be bad environment, it could be about employment. Go for it. But just practice your communication. I'm not just talking verbal. Practice your approach. Ask yourself. I keep plugging Valid, they've got a whole lot of resource sources. What is advocacy look like, and how do you approach it? Obviously, you've got to have respect for people like Graeme Innes. Who has his approach but I, got this stage where I'm going to pick my fights and I say, that in a nice way. Pick my battles. And you could try and do it by yourself. But you know what? It's so much easier. Did you get people on the same page as you? And you start by being nice about this. It is about a planned approach and share. Share what you're doing. Don't keep it all inside you. Social media will just see a lot of stuff, but sometimes. Okay, phone down for a minute. I'm going to breathe. I'm going to smell a flower. I'm going to have a cup of tea. Whatever old people do or young people do. I'm going to listen to favourite music and just try. Go into it. So, go into that zone where you're asking, what's my purpose and what do I need to make it happen?
Peta [00:21:54] Final question. What do you hope for the future for people with disabilities?
John McKenna [00:22:00] I hope for the future that the general public around the world are seeing the value that people disabilities bring, not just monetary. Just the fact that we can add value, I guess, in a different way. It may be humour, it may be, helping people disabilities do like to help other people. And I want to see more areas such as governance or not for profit boards, people, disabilities to be included when it comes to decision making. We see little bits of that happening, but it's not happening fast enough. When we talk about the value add of a diverse board. Sadly, we live in a society where you've got boards of decision makers, are people, disability fully represented at the table? Not always. Why not? It's too hard. No it's not. More people disabilities. We see in the workforce. That's just going to be. You know, maybe there's been many times a able body people have come up to me and said, I've learned so much just by working with you in the next office. I respect that there are people who don't want to approach disability because of fear, and I'm not going to criticise those people. But you know what? They watching and listening and learning because of our presence.
Peta [00:23:26] Thank you for listening to this week's episode. I hope you enjoyed it. Don't forget you can always scroll back in the fade. I had a waggy on the podcast last week. We spoke about what it was like for him growing up in the foothills of the Himalayas and then moving to Canada for better access needs and for a better quality of life as a disabled person. As always, if you do enjoy this podcast, can I encourage you to leave a rating and review on Apple or Spotify, and you can always get in contact with me. My handle on Instagram is at Peter Hook or you can send me an email. My email address is I can't stand podcast at gmail.com. Thanks again for listening. I really appreciate you. And until next week. Have a good one guys. Bye. I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin Nation., of which I record the podcast today. And I pay my respects to both elders, past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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