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By Peter Anderson,
MS Web People,
MS Ambassador & public speaker.
No-Limits is an award winning Australian television show on Melbourne's Channel 31 - a show presented by people with disabilities for people with disabilities. Being on Community TV, it could be considered somewhat irreverant at times, by some. However, the regular and guest panelists have a lot of fun and it is a very informative show that raises awareness about disability issues and rights.
I was honoured to be invited as a guest on the show and am helping No Limits to create its own web presence that will include transcripts from the shows. In the meantime, here is an extract of the transcript from my interview with hosts Stella Young and Sara McQueenie.
HOST: Hi Pete, now, you're the ambassador for the MS Association, is that right?
PETE: I'm one of the ambassador team, yep.
HOST: OK, now ... tell us about MS yourself. We were talking earlier, and you spoke about how there is a variation of ways that MS shows in individuals - is that right?
PETE: There is, yeah. It appears that for different people, the MS journey is a different one. People end up with different symptoms and different challenges. I've met ... let's say I've met 10 MS people - there's 20 stories. Everyone has got a different story .. a story of their own. So, we go out as ambassadors and talk about living with MS, and how to deal with challenges - and there's lots of them - in terms of mobility and transport and finances and what have you. We go out and show that you can get on with it, you can stay active. And my personal belief is you stay busy in mind and body, for it breeds positive results.
HOST: And what sort of places do you normally go to to speak?
PETE: I've spoken to service clubs predominantly. So that's Lions and Apex and that sort of thing. Although we will talk anywhere, any time.
HOST: As we know.
PETE: As you can tell ... but, yeah, we'll talk to anyone. Schools, clubs of any kind, groups ... So can you actually take action on behalf of people with MS who aren't able to act for themselves?
HOST: Because I know there's a lady in the town where I'm from at the moment who's living in a nursing home - she's about 45, and her parents are unable to look after her because they're elderly. Her husband has actually left, and as she did live in Perth, she's had to move back.
PETE: And she's in a nursing home with elderly people?
HOST: Elderly people, yeah. And I'm really concerned about that. Yeah. There's a campaign, isn't there ... Young people in nursing homes is a hot issue.
PETE: Oh, absolutely, they don't belong there. They need care. They need looking after, but they don't belong in a traditional nursing home. So it's a problem.
HOST: So, in her case, having MS, could you ... I don't know ... Advocate on her behalf?
PETE: Sure - I mean, what we would like to do is make sure she's aware of any local groups, support groups, that may be in existence.
HOST: She may be. I know people that have tried them and don't like them.
PETE: OK, it's a matter of talking with her, making contact, showing her what's available. Finding out if she's an Internet person, perhaps.
HOST: I think part of her issue is she's progressed so far that she actually isn't able to communicate anymore, and there's not anyone doing anything about that. It's major attending care stuff.
PETE: It's very hard.
HOST: I know people that have lost speech or people without speech. And when it's a first time for you, meeting them or trying to deal with it, it's very hard to understand.
PETE: It's not so hard now, all I know is the guy that I know with no speech keeps beating me with chess. Time and time again. Ray, if you're watching! You devil!
HOST: 'Cause you're a big advocate for the Net, aren't you? You use the Internet every day.
PETE: Every day. Sometimes all day. Yep.
HOST: That's your background - in IT?
PETE: In IT. I spent 20 years in IT before MS forced retirement, I guess. I would never have retired, probably, if I had a choice.
HOST: You still haven't, really. You've just gone from one domain to another.
PETE: I'm just not getting paid!
HOST: Hey, darl, you never know what we can do here!
PETE: Just give it a few shots. I'm very keen on continuing my mental exercises. I stay on the Web and I use it for study and learning and reading and development. It's a self-induced study regime I have. And I've reached milestones recently that I am personally pleased with in terms of reaching certain benchmarks that are quite unusual in the certain sector of the market I'm in. So that's my mental exercise.
HOST: Would you like to promote your website while you're here?
PETE: It says a lot and sells nothing. It's about how to get on with life, how to get on with challenges, how to get on with disability of any kind - your own or a family member's or a loved one. And how to keep a positive mental attitude - it's very important.
HOST: So, the address is?
PETE: The address is www.mswebpeople.com. It's about MS. I've got MS. I'm in a wheelchair - you probably can't see it but I'm in a wheelchair - it's because of MS.
HOST: Yes, he is, people. I'll vouch for him.
PETE: ... the web site is about MS people getting on the Web and keeping busy, staying active, keeping learning, staying contributors. And that's what I miss the most - the ability to contribute, to help, to do a little something. So I've found this is an escape for me, it's a way of doing it. And I've got people and readers from all over the world, which I'm thrilled about. And I love getting emails from people in Ireland and America and England - it's great fun.
HOST: But you're not just at home. I mean, you do things ... Like, one of your missions is you want to skydive in the wheelchair.
PETE: Oh, yeah. Yeah! It's not about just sitting behind a computer. You get out there.
HOST: You were going to wheelchair around China.
PETE: I was going on a fundraiser which was for pushbikes. To pushbike around China to raise money and funds - also called 'funny'... for MS research, etc. It's only recently that I've been convinced I should withdraw because of the environmental (conditions) ... it's shocking in terms of too many steps. They haven't catered for the disabled - physically disabled. So I decided, "Look, you know what? It's OK. I won't go. I won't go." I mean, I'm crazy, but I'm not stupid. Make any sense?
HOST: For sure, absolutely.
PETE: I'm nuts, 'cause you get out and you live - but I'm not silly. You'd need to have a battalion of attendant carers in a place like that, wouldn't you?
HOST: Well, yeah. Yeah.
PETE: And the medical attention was really quite horrible. I mean, toilets, for example. Ah, I'd like rails ...
HOST: Hey! Take these!
PETE: Actually, that's not a bad idea, except ...
HOST: Take the rails, Peter!
PETE: ... except you need walls to put rails on. Now, some of the facilities just had no walls. See, they're dirt. Find a hole. If you can't find a hole, dig a hole, and that'll do. So ... (Groans) It's a bit hard.
HOST: Yeah. It's a bit hard. Squatting's not always practical.
PETE: No, that's right (Laughs) ... What bothers me about travelling to countries, is that you can only go to countries that are really similar to Australia, as in, countries that have disability rights movements where there's ramps. I mean, recently, I thought about travelling to South America and then went, "Not many ramps over there."
HOST: Not many at all, so ...
PETE: I've been fortunate and I've travelled for business. I've travelled to several parts of Asia, the US ... and it was never in my mind then. But if I think about how it might work now, with what I have in my head today, I sometimes think, "I couldn't have gone there, I couldn't have gone there ..." You've got to be aware there are places you may end up that you're just not going to be able to go. You have to be really well organised in advance. You just can't go there. There's no good feeling bad about it.
HOST: There's still places you can go.
PETE: Oh, yeah! ... and there's things you can do, and things you can achieve, and activities you can get involved with that make you feel good, will grow your personal being in terms of mentally or spirit ... whatever way you want. So you choose those things. And there's some things you can't do. You've got to accept that and say, "You know what? I just can't do that." Anyway, the world's practically come to Australia, so you can find most things.
PETE: The Net for me ... I'm on the Internet almost every day. Usually every day. And I call it my 'window to the world', because I can get to anything and everything from my desk.
HOST: It's not quite the same. My computer hates me, and only works when it's in the mood, so I can't really do the same thing until I can afford a better one.
PETE: Moody computers - it's an ongoing issue, yes!
HOST: Look, it's been absolutely fantastic having you on, Peter. Thank you.
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