[00:00:05] Speaker A: Welcome to digital empowerment. Now, season four. I'm your host, Keith Maffiji Gencini. Today I'm talking to John McFarland, the founder of the Popsicle organization.
John, welcome to the show.
[00:00:37] Speaker B: Thank you very much. I'm glad to be with you.
[00:00:40] Speaker A: Let's start off with the vile work that your organization.
Judge, you were telling me about it before we started the episode.
[00:00:59] Speaker B: Okay. Popsicle is an acronym for the post polio Syndrome center for Learning Excellence.
There's an awful lot of people around who've had polio, polio survivors, as they prefer to be called, who are running up against problems, and they cannot find anybody who knows how to deal with polio. In most countries, polio. And in this. In the states especially, polio has been eradicated for 50 years.
[00:01:38] Speaker A: Yeah, something like.
[00:01:42] Speaker B: In Europe, it's been, uh, polio free for 45 years. But there are still organizations, still cases of wild polio occurring around the world, especially in places like Afghanistan and Pakistan. And there are also, unfortunately, cases of polio which occur through circulating vaccine derived and polio. Now, most. Most people of my age, rather.
Rather of more elderly years than you, Keith, are in a situation where we used to get our polio vaccine on our tongue or on a sugar lump.
Now, if they. They are still used in certain places, and if those vaccines are not kept properly at the right temperature and the right storage conditions, they can actually mutate and cause polio itself.
[00:02:51] Speaker A: Wrong phrase to use, but that's a fascinating fact that you just said that the vaccine can mutate under certain conditions and actually cause the syndrome or disease that it was created to prevent.
[00:03:30] Speaker B: Correct. And, wow.
That leads into a whole other area of problems, not just with polio, but with various other vaccines, but various other ways of doing things, because you've got to be in a situation where you can keep these vaccines in the correct storage areas.
[00:04:00] Speaker A: Yeah.
[00:04:01] Speaker B: And it goes through, you know, popsicle is one area. That's my own organization, but then I work on with others that I'm. I've been working with for some years now, like the post polio syndrome advocacy group. Now, that is. It's not rotary, but it's linked to Rotary International, loosely, because quite a few of us who are in it are in rotary, and that is a worldwide organization. Now, when I mean worldwide, it gets really awkward. On some days, we are having discussions where the furthest west is Hawaii, and the furthest east that we've got on the same link is New Zealand. Unfortunately, there is a thing called the international date line that goes in between the two so we can land up with very awkward conversations like I had the other night when I was. I didn't put the camera on. Nobody would want to see me at this time in the morning. I. It was 02:00 a.m. and we were having conversations and doing those sorts of things. I'm also involved with Rotary International's world disability advocacy, which is looking at all areas of disability around the world for all sorts of people without fear or favorite.
[00:05:39] Speaker A: I found you through LinkedIn, and it said you were an actor. A little background on me. I'm also a actor, and as you can tell by my lad's name, half of it, I better be irish or there's something wrong with my lads and my family line actually descends from Donegal, and so I'm very taken with my. An central homeland, in particular the advocacy and acting over there. As you well know, the theater in Ireland is world renowned. How did you first get bitten, so to speak, by the acting bug. And what propelled you into acting prevention?
[00:07:06] Speaker B: Very simple. It was one of those things where you land up and you have an opportunity which opens up, which allows you to express your opinions and your views in a public fora or forum.
And I, as you can tell from my accent, I'm certainly not irish.
I was born in Scotland, brought up, I won't say in the UK, peripatetic. I grew up in Hong Kong, Japan, Kenya, Washington, DC, all over the place. Wow.
[00:07:51] Speaker A: I'm sorry for Mitch identifying you as Irish.
That's incredible. But incredible error on my part. I hope you will forgive me that.
Please continue with your history.
[00:08:19] Speaker B: No, no forgiveness required, Keith.
I'm literally. I'm peripatetic.
I have never stayed in one place for very long. I'll give you an example. When I got married, more years ago than my wife would care to remember, I'm now in a. We moved 18 months in the first three.
We've moved three times in the first 18 months we were married. So we've. We've lived all over the place.
How do I.
[00:08:56] Speaker A: Let me ask you, is there any place on the planet that you haven't driven to, flown over, are lived in? Because you sound very much like a worldwide traveler.
[00:09:23] Speaker B: The only place I've not been is down into Antarctica. The.
You know, I've literally lived on every continent apart from Antarctica, as has my wife.
[00:09:36] Speaker A: Okay, fair enough.
[00:09:43] Speaker B: I worked for a major organization.
I landed up as their executive director and went on from there until my polio took over on me. The post polio syndrome.
But it doesn't matter where you go or what you do. Life is the living.
[00:10:06] Speaker A: Yeah.
[00:10:06] Speaker B: And people don't realize that enough.
They have a tendency to leave.
[00:10:14] Speaker A: Right?
[00:10:15] Speaker B: Yeah. They have a tendency to go back and say, well, and they always.
With a lot of. With a lot of people with a lot of disabilities that are always looking backwards over their shoulder, I'm afraid I have the opposite point of view. I look forwards.
[00:10:33] Speaker A: Yeah.
Tell me, what is like to act with a disability, or did the polio prevent you from acting in you guarding to advocacy instead? Or were you able to do both for time?
[00:11:03] Speaker B: I was able to do both.
These days, I'm. Unfortunately, my disability is getting worse. I've got increasing neurological divergence and degeneration. But at the end of the day, I have only one thing that I work on is, all right, my carapace, if you would like to use that long word, is breaking down. But one thing that still works, unfortunately for some, is the gray cells. So I'm still working on the basis of. It doesn't matter as long as I can get the help that I require to do what I need to do physically, my brain is active, and if I did nothing else in life, I would want to keep that active.
I'm not sure if you actually know this one, Keith, but some people turn around and go, wow, what? I'm 76 now, and I'm still intending to be carrying on. As long as I can carry on. I will carry on. I will carry on acting, and I do things with radio in Ireland and with the BBC.
I also will carry on acting on behalf of people and working as an advocate for them.
There are so many people who do not have a voice.
They do, and unfortunately, they don't know how to get a voice either.
One of the things that I want to do over the years is to empower people, give them what they need to be able to work and to be able to have their voice so they can speak for themselves and not be disregarded or disrespected.
[00:13:19] Speaker A: So much of what you just said is so true.
Uh, and it's difficult to figure out where to go from what you just said, because all of it is from keeping your mind active to advocating for those who unfortunately don't have a voice and are very often overlooked by society at large.
My dad, judge, turned 90, and he still shaw beds tack with little variations here or there.
And my mother is quite a bit younger, but she's also very active.
And I think that's great.
It helps keep you alive, keep you engaged in this great adventure called life.
And so what would take me back to what it was like when you first found out you had polio and what it was like adapting to that knowledge. And then when the syndrome came, what would you like a judge to your new normal? And has the progression been slow? Has it been moderate? Has it, what is it like to have polio?
[00:15:48] Speaker B: Well, most, most people these days and modern society don't know what polio means. It used to be called infant.
[00:15:57] Speaker A: Exactly why I'm asking the question.
[00:16:02] Speaker B: Right. Well, it's a virus and it's a gastroenteritic virus, which means that it goes in one end and without being too impolite, goes out the other.
But in, in certain number of cases, it crosses the gut blood wall and it goes in and attacks what's called the anterior horns on the spine. And it paralyzes not the nerves which you feel, but the nerves which make you move away. So if somebody stuck a candle under my foot, I could feel it, it would burn, but I would not be able to move my, my leg out the way I am, totally paralyzed from just below my diaphragm right the way down, and partial paralysis in my right arm, as you might be able to see from my hand.
So what was it like growing up? You got on with life?
I couldn't kick a football, a soccer ball, as you would call it, over your side.
But I could use my crutches to kick it around. And occasionally, if I was playing football and somebody got in my way and I went to tackle them, it was my crutches which tackled them, which got rid of them.
It just went on. I just took life day by day.
You have to meet life as it meets you.
There is no point in, as I was saying earlier, looking backwards. Oh, yes. These days they turn around with polio and they say, if we'd known what we know now, if you hadn't exercised so hard, if you hadn't done this, you hadn't done that, you would not be in the situation that you are now.
I've only got one comment to make.
I wouldn't change one iota of what's happened in my life.
[00:18:23] Speaker A: I have very profound.
How did you come to that realization?
Were you as child? Did you adopt the modality of always.
[00:18:43] Speaker B: Looking forward, never back, always forward, always forward?
I'm going to give you one thing which you may not realize, and a lot of people do not realize, is that if it hadn't been for polio, modern intensive care, intensive therapy units would not exist today.
[00:19:13] Speaker A: Wow.
[00:19:15] Speaker B: Now, if you go. If you go back to 1952, there was an outbreak of polio in Copenhagen, and the outbreak of polio was so severe that the mortality rate was 89%.
Now, you are talking about. You are talking about very, very bad things.
But through fortunate effects, people being around, some of whom were american, others were danish, they came up with a method of actually treating polio cases. Iron lungs were fire and far, far, few. There wasn't much around. So what they actually did is they had medical students and dental students putting a mask over the patient's face and hand pumping them until they got enough power back in their chest to be able to get a certain amount of respiration.
And the way that the regime they came up with is actually the regime, which is the modern way of, indeed, of dealing with intensive care, which is looking after the patient right away from the outset and dealing with it. And Icus, Itu's, as they're called in other parts of the world, wouldn't exist without them.
I am not disappearing. I've just forgotten the name of it. A doctor, Hannah Wunsch, who is now in New York and is actually lecturing there, but was in Toronto, wrote a book. I forgot the name of. The book has just gone out of my head, and it's called Autumn Ghost.
And the reason it's called autumn Ghost is that in northern Europe, polio was prevalent in the fall, autumn of each year, whereas if you read books like Nemesis by Philip Roth, it was prevalent in North America in the summer.
But, you know, she, Hannah Wunsch, has written this, written this book, and it actually, I asked her to come on to a group and talk to a global audience of polio survivors. And she said, what am I going to be able to tell them? I'm only going to tell them what happened. I said, you're going to turn it on his head, Hannah.
You're going to tell them that if it hadn't been for them, thousands, millions of other people would not have survived because they would not have developed the intensive care facilities and therapies.
[00:22:32] Speaker A: Yeah, yeah. And, yeah, there's so much truth to.
It's just a staggering number to try to compute that would not be here without intensive care.
I spent three months of my life at the very beginning because I was premature in the necunate natal intensive care unit here in America.
I find it, again, I don't mean to water down polio, but I find it fascinating hearing about your experience with polio, because across the pond, as you said, most Americans don't know what polio is, they think it's eradicated completely because of a vaccine 50 years ago or something like that, but it's very much still prevalent.
Maybe not as that's prevalent, but it's still around. It's. It's not gone.
[00:24:32] Speaker B: It's not gone. If you go back to 1988, there were 388,000 cases of paralytic polio.
Now, if you. If you. If you. If you like to sit down with your calculator, you can work it out. That means that at least 200 times more than that had actually had the polio virus at some stage, although it hadn't affected them. But we're now down to a case this year, we've got about 40 cases of wild polio right the way around the world, mostly in the Pakistan Afghanistan regions. But take it right the way through to the other side of it.
There are still somewhere in the region of 18 to 20 million polio survivors in the world. Yeah, I saw your reaction. It's an enormous number. Most of these people.
I wouldn't say existed. That be a demeaning word. They live in sub saharan Africa and in the indian subcontinent, and they are. They are still there. They are still requiring help, and there is awful lot of help that's not being given now.
It just doesn't occur with polio.
It occurs with all sorts of things. You've got people with.
You've got people with ALS, as you call it, in the States, MND, motor neurone disease. Over here, it's the same thing. You've got various other neurological conditions. You've got other people who are fighting for their rights.
You have loads of people around the world who have cerebral palsy, and they are a situation where, because they have a tick or they can't work in the same way, they are marginalized.
[00:26:50] Speaker A: Yes, I have cerebral palsy myself. I don't know if you can tell by the accent, but it's.
[00:27:02] Speaker B: As it so happens in my house at the moment is one of my lifelong friends who I met when she was nine, and her son is CP.
She's over visiting me from England at the moment.
But, yeah, I've seen firsthand what happens. I've seen how it works. I've also seen with other children who've got downs. Yeah, I've. I've seen other. I've seen other kids with other neurodivergent problems. Autism, um, you know, ah, ADHD, all those sorts. And I'm working with all of those groups as well, through the Rotary Club of world disability advocacy we are getting calls for help every single day from around the world. Heartbreaking calls. And you get small successes, as one of my colleagues did. She had a case which got referred back to her from central Africa, from a lady who had severe physical problems through birth defect. And she was cooking on a little wooden stove.
She had a little gas lamp in a house, and she could afford about one telephone call on the Internet a month.
And she wanted. And she reached out and she wanted to know what was going on, what could be done. We picked up the cry for help, or one of my colleagues did in Quebec, and she was able to talk to her, put her in touch with somebody in her locality, helped her out, and she is now in better housing. She's got better living conditions and everything else.
I don't call people. People say to me, oh, you're a polio survivor?
And I say, yeah, okay, I'm one of those, but I'm actually part of the polio family.
It's a family around the world. Disability is a family.
You have probably faced the similar sorts of challenges and acceptance and in being able to do things at school or later on in life, as I have.
[00:29:42] Speaker A: Yes, absolutely.
[00:29:46] Speaker B: We all have the same things. We are all part of a great big melting pot, right? There may be, according to the who latest stats, there may be 1 billion people who have got some form of disability around the world.
Every single person around the world has got a disability in one way or another, whether it be physical, mental, or attitudinal.
[00:30:12] Speaker A: So what are the top things that you wish that people knew about polio and people who live with polio? Because, again, a lot of people think it's no longer present, and it very much is. It's just less present than it used to be. But it's a very much still around, and there are survivors who live with it.
What do you hope that people take away from knowing more about polio and the legends of the vaccine and how ridge has evolved the treatment? And what do you hope that people take away from everything we've talked about in terms of understanding polio and its very real effects on today, let's take.
[00:31:50] Speaker B: Polio out of the equation, because polio is a disease.
In fact, it's the only disease which is classified by the World Health Organization and its international classification of diseases in three different areas.
One is the.
The first one that you get the acute, and there's what's called polio sequelae, and then there's what you call late effects of polio post polio syndrome. Or polio muscular atrophy, whichever way you like to put it. There's all these sort of comments.
A long number of years ago, Bill Gates and put a lot of money in with rotary and trying to eradicate polio as the second disease in the world which would be totally eradicated, the first being smallpox. With Jenna and Jenner is the man who started off the whole vaccine thing with finding out that milkmaids who used to get cow pox, believe it or not, from milking cows, never got smallpox. And when they found out that they were able to isolate bits and pieces, inoculate people against smallpox, that's how the first one disappeared. Second, 1 may be polio, although it's going to be a long, hard fight still, but if you take polio out of the equation, you've got to look at it as a complete thing about what is disability?
How is disability viewed?
Disability is not something to be scared of. The days of people when you were in a. Using a wheelchair and you were going down the street and they dragged their kids across the road because they're not nice.
You don't need those. Look at those sorts of things and you go on from those. Those are thankfully disappearing in large proportions, certainly in North America, large hunks of South America, not so much in the central african belt and in parts of India, because there are cultural differences.
And you also have to look at culture with disability, because in many cases, if a woman gives birth to a disabled child, she is the one who is defective and has feared the gods and has done something wrong or has created sin. And you've got other attitudes of ableism as well. And you've also got the horrific circumstances which occurs in certain parts of Africa where those people who get the pigmentation, they lose pigmentation for their black skin, they are looked at as that is a way to stop myself from becoming disabled or anything else. And they are actually killed and in certain places eaten.
[00:35:24] Speaker A: I.
[00:35:26] Speaker B: You know, you've got. You've got. It's down to that. You've also got. You've also got the situation in certain of the established churches, even in. And I'm not going to mention churches by name, because we will get into all sorts of ethical discussions. But you've got situations where if a child is born, and maybe in a certain culture, it is not the child who is the problem, it is the parents who have sinned. But you've also got the thing that then, because the child has a disability, they are then hidden away.
And that happens so many times around the world. And I see it all the time, even in Europe, even in North America.
What have I learned over the years? Well, the one thing I've learned for a starter is stop looking over your shoulder. You can't rectify what's happened in the past. You've got to look forward, learn and live. Live for today and work on the basis of its quality of life.
Now, there are many people who have got debilitating diseases, ALS, MND, various others, and they are turning around and they are saying, it's not quantity, it's quality.
[00:37:09] Speaker A: Yeah.
[00:37:11] Speaker B: And it's very true. Something which you won't be aware of, probably over your side is that there was. We have a game over in England called rugby league football.
It's played with a ball the same as you would use for soccer, so you can do torpedo throws and everything else. There was a little guy who played number seven. He was five foot two. His name was Rob Burroughs.
He developed mnd. Als. Yeah, he took it head on.
The worst part of it, to some extent, was that his wife was a trained physical physiotherapist, physical therapist, who was dealing with people like this all her professional life. And she had to watch her husband come down with it.
Everybody rallied around him and by his attitude of life, and with the help of his teammates, he raised, before he died, over 50 million pounds for research.
In three years.
He took on the absolute of life is for living. I will do what I can to live the best life I can and to help others live the best life they can.
[00:38:47] Speaker A: Wow, that's incredible. And certainly life well lived and a life of savage. And it's extraordinary learning a lot from you about how to live life, because you're right. It's for living. You should look forward, not backwards.
I like to think that both advocates with disabilities and those who have yet to discover our own, breeds their own disabilities, listen and watch this program. I'm not naive to think that everyone takes away the same things from episodes as everyone else does. So, as my guests, what do you hope that advocates on the other side of the pond, as you would say, take away from this episode? And would you hope that those who have yet to become disabled themselves take away from this episode?
[00:40:32] Speaker B: Life is precious.
It's very precious.
As an advocate, I would like to think that people will be able to learn how to speak up for themselves.
People with disabilities are not to be talked down to. They are to be treated as an equal. And when they are treated as an equal, they will be in a situation where they can demonstrate to others who perhaps may be more physically or intellectually able in some respects that they have a lot to learn themselves.
We all have a great deal to learn.
The biggest experience we've all got is how to treat each other as equals and how that we can show others how we can live and how we can actually enhance the lives of others by precept and example.
[00:41:45] Speaker A: John, I want to thank you for taking time out of your day or night or evening, whatever, to have this conversation with me. I've enjoyed it immensely. I've learned a ton about polio, but more important, your mindset, your forward thinking attitude and the vital advocacy you do to the popsicle organization.
If anyone wants to find out more about the vital work that the popsicle organization does, how would they be able to do that?
[00:42:48] Speaker B: The best way to look at it is not to look at the Popsicle organization, which is actually very clinically focused because there are many doctors who do not understand how to treat old polio cases. But if they want to find out more about polio and advocacy for polio, you go to pps advocacymail.com.
and if you want to actually look at the whole area of advocacy for disabled persons, you go to rotarywda.com. and if I can get a plug in because we are of a certain generation, or I'm, shall we say, a slightly more elderly generation yourself, we are holding on the 26 October a worldwide summit on inclusive education for children with disabilities.
Children are our future.
Children with disabilities are our future and we are looking at running a world what we are not looking at. We are running a worldwide webinar and situation for inclusive education for children with disabilities around the world. And you can get further details of that at Rotary Rotary Club of World disability advocacy on Facebook and you can register for free. And you will. I will tell you that there is one lady who is our keynote speaker.
She is a brilliant advocate and shows you what can be done. She is deaf, she is blind and she graduated from Harvard Law School.
[00:44:59] Speaker A: That says it all. John, it's been such a pleasure to get to know you. I felt like we could talk for another hour or two. I hope.
I hope you know you can always reach out and come back on the channel program. I hope you continue your vital work and know that you've made a difference through your life.
[00:45:36] Speaker B: Thank you for the opportunity, Keith. You know where I am as well. It works the other way around.
We can. We can all just do our own little bit to help others in this world. And if we can do no more than that, we will have achieved a great deal in life.
[00:46:05] Speaker A: You have been listening to disability empowerment. Now I would like to thank my dad.
You are listener and the Didsability empowerment team that made vids episode podcable. More information about the podcast can be
[email protected] or on our social media adjustment. Now the podcast is available wherever you listen to. Podcasts are on the official website. Don't forget to rate, comment, and share the podcast. This episode of Disability Empowerment Knowledge copyrighted 20 2014.
