Growing Bold with Multiple Sclerosis

• Movies: Spin Out [SONY Pictures]
• Teaching: Comedy Masterclasses
• Live Shows: Fast Life on Wheels
• Weekly Column: 'The Ferguson Report'
• Doug Anthony AllStars: DAAS DOCO

• Tim's Memoir: 'Carry A Big Stick'
• Comedy Writing Manual: 'The Cheeky Monkey'
• Youth Orchestras: Billie & The Dinosaurs
• Artworks: Tim Awt
• Podcast: Bunga Bunga

• Patron of Music for Canberra
• Patron of MS Australia

• Find out more about MS
• Doug Anthony Allstars

Growing Bold and Multiple Sclerosis

Pete: Welcome to the Grow Bold with Disability podcast, brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability care about most, to help us live bolder, healthier, better connected lives. I’m journalist, Pete Timbs.

Tristram: And I’m Tristram Peters. I work for Disability Service Directory, Clickability and am a wheelchair user living with spinal muscular atrophy.

Pete: Today’s episode of Grow Bold with Disability is growing bold with MS and our guest is Tim Ferguson, one of Australia’s most accomplished comedians, who has battled multiple sclerosis for over 30 years and is the patron of MS Australia. In this episode we’ll hear how Tim discovered he had MS, how he kept it from everyone and why he decided it was time to come out in 2010. Tim, welcome to Grow Bold with Disability.

Tim: Oh, Tristram, Pete, you know, it’s just awesome to speak to you. You know I look up to you and not just because you’re tall.

Tristram: I reckon we’re the same height, you and me, Mr Ferguson. I reckon we’re pretty much eye to eye.

Tim: Well, Quinton Connaghan [?] used to call it, what was it, fart height 911.

Tristram: That sounds about right, that sounds about right.

Tim: When you’re in a wheelchair, you know, you get everything. You meet the people and everything that’s coming out of them.

Tristram: Yes, sadly that’s the case, sadly. And you mentioned the wheelchair there, so for our listeners do you mind explaining what multiple sclerosis is?

Tim: Well I can’t, because nobody can. They kind of know what it does. It’s the erosion of the myelin that is like the rubber tubing around every nerve in your central nervous system. And the erosion occurs thanks to an overactive autoimmune system which is a bit like... I don’t know, did you hear about that American guy who got one of those campervans and it had auto drive?

And he put it on auto drive and they went out the back to make a cup of coffee and he sued the company because it didn’t say in the manual that what they meant by auto drive was the thing doesn’t drive itself.

My autoimmune system is much the same as the guy in the back, making the coffee saying, yes, everything’s fine here, as it smashes into every nerve in my brain.

Tristram: What are some of the symptoms with MS?

Tim: Most commonly it has things to do with motor function of every part of your brain including, you know, if you can wriggle your eyebrows, I can. At one time my eyebrows didn’t work. It can affect your speech, it can make your eyes go wonky. It can make you experience neural pain, which is real pain because it’s real injuries, it’s just the injuries are tiny, tiny, tiny little injuries on your nerves.

It does all sorts of stuff. You can get brain fog, foggy brain. Wouldn’t that be a great excuse? I’m waiting for that. Because then if people say, where were you, you were supposed to turn up? You were supposed to go on stage. I just say, no mate, I was caught in brain fog, I got a foggy brain. But it’s a real thing, where language becomes difficult, memory becomes difficult.

Basically, at the end of the day, MS is a bit like growing old before your time. In ten years all my symptoms will not be regarded as interesting because everybody else will be wheeling around, forgetting where they’re supposed to be.

Pete: You’re just ahead of curve, mate.

Tim: Ahead of the curve. Ahead of the curve like you, Pete, just always stay one inch ahead of the curve.

Pete: That’s what you want.

Tristram: When did you first notice some of these symptoms? When did they first start presenting?

Tim: I was 19, Tristram, when my eyes went crossed which is kind of adorable. I looked a bit like Barbara Streisand, except good looking, and I thought, oh, this is odd. Then I went to a GP and said, can you notice anything funny and he went, yes, I can. But he didn’t know. He just told me to eat carrots and stop masturbating. Well of course I didn’t do either of those things, but it cleared up. Because I had repeating, relapsing which is... Or remitting, relapsing where it comes and it goes.

The myelin, when you’ve got that kind of MS, fixes itself. So I didn’t know, that was the first time. Then different things happened. You get numbness, ringing, pain, zapping, things would stop working and then they’d start working again. I never thought they were all the same thing, because they were all so different.

It took me a long time to actually get someone to take MRI of my brain, and then it was covered in all these tiny, little white spots which weren’t cocaine residue, you’d be amazed to hear. They were in fact like little clusters of these scars and that’s what it was.

But for anybody who’s got MS who’s listening, they’ll know as well as I do that, yes, it’s a concern but you can’t spend all day being concerned about the same thing. It would turn you into a bore. Eventually you’ve just got to learn how to get on with stuff.

I’ve got progressive MS now, which means that it’s kind of like Pauline Hanson. You can’t get rid of her and she’s just going to get worse and worse and worse. But you can’t let that worry you. I should think about my MS more probably. I should take it into account more often when I’m making plans.

We’re taking my live show to the States. You know, common sense would say, no, stay at home, watch Netflix, occasionally call your mother to make sure if she’s all right. But bugger that, life is for living, take the risk and say, just put me on that damn plane and then get me off it and we’ll see what happens.

Pete: Well you have had a good life, 80s and 90s, it was very famous back then for drugs, debauchery and you were a 20 something comedian rock star. Do you think that rock and roll lifestyle affected your MS?

Tim: Not at all, unfortunately, because then I could blame my lifestyle. MS has its own timetable, which they reckon is ticking from the get go. But as much as possible you try to... Like anybody, so long as you live reasonably healthy, so long as you don’t sleep with everybody and you don’t drink everything, don’t go to every party, then like anybody you’ll be mildly more healthy than you would be if you’d carried on like a Rolling Stone. You know who I’m talking about.

Pete: Good old Keith.

Tim: Oh, Keith, oh what a legend.

Tristram: In terms of that, when did your MS become something that you couldn’t hide anymore? When did you just decide to go, this is what I have, this is it, and start telling people?

Tim: Yes, that’s a good question, because I kept it quiet when they diagnosed me. And it took a long time because they had to eliminate a long list of things that could cause wonky eyes, funny hands, numbness, pain, ringing, brain fog. There’s a long list of things that could have been wrong with me.

When they finally said, oh now we think this is the one I thought, oh, I’ll keep it to myself. I was making network television. I was touring around the world. And I figured, look, if I can still keep doing it, because most of the symptoms are invisible, then it’s nobody’s bloody business what’s wrong with me. So I thought, well, it’s nobody’s bloody business.

Then I started needing, in about 2013/14, I think, to get around with a walking stick and also... And then that developed into I needed a wheelchair, and I just decided that people wanted to know. They stick their nose... Australians are really bad for this. Americans and British just pretend it’s not happening, but Australians will just go, what’s wrong with you? Hey, what’s wrong with your leg? How come you’re in a wheelchair?

So I found that the best way to stop them asking was to give them a very full and detailed description of MS, and you’d be amazed how quickly people want to change the topic. Once they go, mate, what’s wrong with your leg? You say, well it’s actually multiple sclerosis. This is a neurological condition which is regarded as progressive in some cases. The myelin around the brain’s central nervous system, blah, blah. And they would just...

Tristram: Bore them to death.

Tim: Pretty soon they’re like a cat being held over a bucket of water, you couldn’t get rid of them fast enough.

Tristram: I haven’t tried that, I need to try that myself.

Tim: Yes, you just give them... And of course if you talk slowly and make sure you only take a breath in the middle of a sentence, that’s the trick. The main thing is, breath, breath, breath, the blah, blah, blah, blah, make sure the end of every sentence joins up to the next sentence. So you can see, take a breath, blah, blah, blah. I know it’s cruel, but bugger them.

Tristram: Tim, you’re obviously part of the hugely successful Music Comedy Trio, the Doug Anthony Allstars. How were the guys when you told them? Was it hard to tell them?

Tim: No, I didn’t tell them. I didn’t tell them for years because, again, I figured it’s none of their business. And also then they’ll just freak out over something over which they have no control. In fact, I kept it quiet with members of my family for a long time, just because I didn’t want people to freak out. But then when I told them they were like, oh, so that’s why you’re stupid and it’s like, well, it’s one of the reasons. The other is that I’m very good looking and you can’t be everything, you can’t have it all.

Tristram: I love the humour and the energy. I remember watching one of your recent shows, Just for Laughs, and you make fun of the disability and it’s something so unique, and I like to do it too. When did you realise it was okay to have a laugh at it and just to unpack it and bare it all?

Tim: Straight away, really, Tris. It was... You know, you usually find... I’ve got a mate who’s blind. There’s no politically correct way to say it. He is vision impaired to the point of total, he’s blind, and he’s always just been funny about it. You do that partly to put other people at ease, but also because if you don’t find your disability in some way amusing, then you’re taking it way too serious and you will die young.

Tristram: Absolutely.

Pete: Do you think comedy... Have you found that comedy has helped changed people’s pre existing attitudes to people with disability?

Tim: Oh yes, there’s nothing faster, Pete, nothing works faster. And it’s not just to put people at ease or to give them the message that, hey, I’m all right because I can laugh at it.

It gives them a whole different way of seeing it. It gives them a whole different perspective on whether they should feel uncomfortable about mentioning it. Or people are always worried, oh, I’m stepping on eggshells. Oops, I was talking to a blind man and I can’t believe I said, I see what you mean, I can’t believe I said that.

People with disabilities, we’ve moved on emotionally. I’m not going to get upset just because one of my mates calls me a spacko freak. Because (a) I am technically spastic, but also I’m freakishly, technically spastic. If we worried about what things are called, vision impairment as opposed to blindness, then we’re not really looking at the main problem. If we’re just worried about the name of something, we’re not actually thinking about, how do I give this person a job.

Pete: Yes.

Tim: How do I help this person live a life? How do we make sure that people with any kind of disability, seen or unseen, are treated like everybody else? Simply because they are like everybody else. People with a disability can do everything. A blind person, you may think, I’m an employer, I can’t have a blind person in here, they might hurt themselves.

How the hell do you think they get around their house? How the hell do you think they fill up the fridge? How the hell do you think they stay married? Who the hell do you think feeds their dog? A blind person can operate in virtually any workplace. They can do any job, apart from one that demands that they be able to talk. I mean, no, see. See, that’s where the confusion starts.

Tristram: Actually, just on that...

Tim: You know, deaf people...

Tristram: Sorry, continue.

Tim: Yes, fire away.

Tristram: So mate, just on that...

Tim: Oh, I was just about to say deaf people can have a job doing everything, even... I’m pretty sure that Telstra hires deaf people to answer the phone in their complaints department.

Tristram: It’s funny you mention... As your MS got more and more debilitating for you, and you’ve grown into the disability world, if you know what I mean, what have you discovered about that disability world? Do people treat you like you are completely useless?

Tim: Oh, certainly not if they’re disabled, they don’t.

Tristram: Correct, yes.

Tim: Everybody seems to be on the same page, which is they start at whatever and work their way down. Some people do need to take some convincing that I can do everything that’s needed for a comedian, apart from stand up, that’s the irony. I do stand up comedy without once standing up. But apart from that, there still needs to be not so much an education, but kind of some relaxing of people. People need to relax, particularly employers.

Because say you’ve got a business and you think, I’ll hire someone who gets around in a wheelchair or uses a mobility device of some kind, then you’re going to have to put in a ramp. The government will pay for the ramp, 100% of that ramp is covered. Not only that, but you get a gold star and thumbs up and you get called things like a legend, simply because you put in a ramp for someone who you’re going to exploit like all of your workers.

People with disabilities, the Human Rights Commission worldwide did a study, it was only last year. And it showed people with disabilities work longer, they work through lunchtime, presumably because they can’t get out of the building, and they work harder. And best of all, they do not complain. Now if you’re an employer, surely they’re qualities you can exploit, you know, you can really get your money’s worth out of a person with disabilities.

And if they’re not going to complain... If you’re an employer, think of how many complaints you get just about international roast coffee that you give your workers, compared to people with disabilities. And international roast is international, it’s classy.

Tim: Seriously, the employment of people with disabilities is the next wave. We’ve had three waves of feminism and still women are having to fight for things like getting equal pay, having equal representation on the boards in executive boardrooms. But consider this. People with disabilities have none. There has been no wave, there has been no wave worldwide for institutional, governmental and social change as regards people with disabilities. And that’s got to change.

Feminism has had a pretty good run and it’s still got a lot of running to do. But disability is not even mentioned. It’s not even thought about by people who regard themselves as woke. They don’t want people with disabilities to be mocked or picked on. Well, yes, that’s fine, thank you very much, thanks for helping us because we’re incapable of defending ourselves from dickheads.

But employing people with disabilities is the next tidal wave that must occur worldwide. And it will start in the west because we’ve got all the machines and all the ability and all the social networks that we need. Examples are NDIS. It will start in places like Australia and it will take at least 150 years for people with disabilities to be treated like women.

Tristram: In terms of kickstarting that wave then, what do we need to do? How do we get that attitude happening now, so it’s not 150 years, because I’d love to see it in the next ten?

How do we make it happen?

Tim: It won’t happen in the next ten. The 150 years is serious vigour. That’s how long it’s taken women to go from being her indoors to being viable, presidential candidates. Within ten years I think there are things that we can do in Australia. One of them is to make it really difficult for employers to not have people with disabilities working in their workplace.

There can be incentives. You get more money, more free money if you hire people with disabilities, or you get penalised taxwise if you don’t have any people with disabilities. Oh man, you don’t get the 1.5% rebate, oh damn, can you believe that? It could just be as simple as that, carrot and stick.

People will say, oh my God, how could you use the tax system? But we use it for free Medicare, we use it for the NDIS. Yes, we should make it very economically, financially difficult for employers who keep making excuses as to why they will not hire people with mental and/or physical acquired, visible or invisible disabilities. Because bugger it.

Pete: I agree, I like it, I like your idea. Mate, are you going to go back into politics? I know you’ve had a run.

Tim: Oh yes, yes, I was talking about this. I thought I might go into, what’s it called, the New South Wales Legislative Assembly, which is where Mark Latham, as a sort of a balance to Mark Latham. Because you get paid, nobody every asks you what you think, and you just have to tick boxes occasionally. And most of the time I think you just sit around getting drunk and being unaccountable.

Pete: With Mark Latham.

Tim: With Mark Latham, and someone’s got to balance Markie out. I mean, I love Mark like a brother, but I don’t particularly like my brother.

Pete: Mate, I can tell you right now that MS hasn’t slowed you down at all. I’m just going to rattle off a few things you’ve been doing. You’re a writer, a producer, you’re a teacher, you’re an artist, you’re obviously a comedian. But the thing that gets me, and I’m a little bit disappointed about this one, you have the third largest Star Wars collection in the southern hemisphere. Why have you only got the bronze medal?

Tim: I don’t know. There are a couple of South African losers who have more than I do. I don’t know who counts this stuff. I guess it must be some sort of little board of people. But, yes, I do, I have many, many, many Star Wars toys. But in my defence, I’m cool, I’m one of the cool people. I go to a party, people want to talk to me, that guy.

Pete: Do they want to talk about Star Wars though?

Tim: Yes, not just because of my full head of hair, but I have... I do, I’ve got a lot. I started buying Star Wars toys when everybody else thought they were daggy, it was a rebellion.

Because I thought the toys were really special, like there’d been no toys that ever looked like these clunky, big plastic things. And so I just used to collect them because everybody else thought... Return of the Jedi had just come out and all the groovy people I knew were over it. I thought, yes, yes, but one day I bet you, you’re going to want one of these toys, so I went and I bought them all and then I bought them all again. And now I’m not going to sell them because, you know, bugger you. You want to buy my toys?

Pete: It’s superannuation, isn’t it?

Tim: Yes. You want to buy my toys? No, no, we’re going to make it hurt.

Tristram: I love it. All right, so Tim, as you are aware, the podcast is called Grow Bold with Disability, and we like to ask all our guests what does growing bold mean to you?

Tim: Well, it’s losing your hair.

Pete: No, not bald, bold.

Tim: Oh, bold, yes, right. Well it’s much the same, you know. You just work hard, you keep doing what you want to do. Occasionally you’ve got to bend your dreams a little, because like a river sometimes you’ve got to go around things instead of grab them on the way down. So how to do it is just keep doing it, and if you keep your hands off it, that rash will clear up.

Tristram: That’s good advice we should all listen to.

Pete: Truer words were never said. Tim, thank you so much for joining us today on Grow Bold with Disability. Our listeners can find out more about Tim and his work with MS Australia, and also any tours that he might be doing around Australia in the links provided in today’s episode shownotes. Mr Timothy Ferguson, thank you again for joining us today.

Tim: Thank you, Pete, thank you, Tristram, straighten up and fly right.

Pete: Thank you for listening and if you have enjoyed today’s episode, then make sure you subscribe to the podcast, Grow Bold with Disability. And if you like what you heard, then please take a few moments to pop over to iTunes and give our podcast a quick rating, so we can continue these conversations and encourage people to grow bold.

This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organisation committed to helping people live bolder lives. We call it Growing Bold and for over 25 years Feros has been making it real for both older Australians and those living with disability. To find out more, head to Feroscare.com.au.

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.