Welcome to our Social Model Starters, 15 minute (or so...) bite-sized podcasts led by our Social Model... & More Festival curator Caroline Mawer. 

This week, Caroline is joined by Fionnathan, a son and father social enterprise, who reject the cult of individuality and the idea that we must operate solo - knowing that the best way to support one another is in loving interest

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About Fionnathan

'Fionnathan exists to have fun and change the world, to trouble your understanding of ability, to reveal superstars in our midst, and to prove that, in fact, we are the people we've been waiting for. 

We share our stories of audacious creativity and abiding optimism with the masses, opening one heart at a time. Through music, live presentations, videos, and visual arts, we seek to collaborate with diverse people who are passionate about what they do.'

'Fionn is a young man from County Clare, and one of the first people in Ireland with cognitive impairment (Down syndrome) to create and manage his own supports. With help from family, he explored the programs of traditional service providers, formed a limited company, proposed his own plan, and, in 2015, agreed to start a pilot project for the HSE.'

Fionn, with his father Jonathan, has established a social enterprise called Fionnathan Productions. They have professional involvement with both of Ireland’s only two HSE-agreed agents for individual funding: as clients of and consultants to Áiseanna Tacaíochta, and as producers of a promotional documentary film commissioned by PossibilitiesPlus. Based on these experiences, they pioneered a new model of support, combining personal budgets and paid employment for the individual with disability.

Website: https://www.fionnathan.com/

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Transcript 

  

Caroline

Welcome to the fourth of the Theatre Deli’s Social Model Starters. I'm Caroline Mawer, curator of the Social Model and More Festival. Our two weeks of Workshops and newly commissioned theatre in London and Sheffield are starting on November the eighth. My guests today are Fionnathan, they’re a son and father Social Enterprise working together in arts, media and education. Fionn has explained ‘I have Down syndrome, my dad doesn't. We work together. I know a lot. But he doesn't. And I'm young, so I often lead.’ I wanted to interview them because of their very special responses to our initial listening exercise. Let's go back for a minute and remind ourselves of the earlier podcast. You can go back to if you missed it. We started by hearing about intersectionality then how individuals are not either disabled or not disabled. We're all a bit of both! And the third podcast was about grief and stigma. Our podcasts are usually  minutes to make them easy to fit in your day. With two interviewees, we might have to go a little bit over. We're going to try and stick to it as a relatively small amount.

So let's go. So I'm Caroline. I'm a skinny white woman aged 60, with short hair and I'm going to take my antiglare glasses on and off so that's what's happening when I put this. And now Fionnathan. They are why we're here. Hi Fionnathan. And thank you so much for taking part. Could you describe yourselves, please?

Fionn  

Yes. Well, hello there. I am. I'm Fionn, and I have Down syndrome. I'm in my twenties, and I have a beard.

Jonathan

And my name is Jonathan. And I'm about the same age as you are., Caroline. And I also have a beard, but I don't have Down syndrome.

Caroline 

Okay. Never mind. Never mind the other half. You're going to get over it, you know? But I know Fionn’s got an advantage over us. So, we've had to agree some priorities to talk about. So of course, there's plenty more good stuff from Fionnathan. And so after this, please check out their website. I'm going to get them to say at the end and let's remind ourselves again, the medical model says doctors are going to fix us and they just don't.

Well, the social model says society should change to fit around us, but it hasn't. And that's the reason for the festival. So my first question, can I ask you both? Can you remember when you first heard about the social model? Was it a useful concept for you? Has it ever worked in any useful way for you?

You want to answer this one?

Fionn

Sure, yeah. Yes, it was from Martin Naughton, an Irish pioneer in disability rights who founded the European Freedom Drive. He first showed that disabled people could live [...] where they want and have control in their lives. It's through him that I became the first person in Ireland with an intellectual disability to manage my own disability support.

He's also the reason why I'm here in Brussels doing an internship with the European Network on Independent Living. For me, when I view life through the Social Model, it's clear that's the way to a better life for us all. A freely intellegent interdependence.

Caroline

Jonathan, you want to say anything, or do you think that Fionns has covered it all there?

Jonathan 

I think that's a really good start. Yeah. And simply to say that the Social Model...and I mean there's not just one society. So to problematize it a wee bit is to suggest that our... the social model can be applied to, like all the strangers in the big country and all of that, you know, all the people on television.

But it's also the people that we that live around us that we see every day. And so I think sometimes we in the disability rights movement can get negative and say, oh, you know, they're not doing enough for us. But when we think about our own neighborhood and the people who we know we interact with, it's a far more nuanced picture, isn't it? 

Social, you know, what's happening in terms of of society. It's good and bad every day.

Caroline 

I'm busy nodding having done lots of thumbs up for what Fionn was saying earlier on. We did talk about that a bit when we talked about it's not a dichotomy, it's not a binary issue.

Jonathan

Right.

Caroline 

Thank you for reminding us of that. So my second question is going to be In your response, you said discrimination against people with learning disabilities often found in spaces curated by people with other disabilities. You gave a great example from an exam. Can you tell us a little more about sort of times when you've experienced discrimination? Most importantly, what sorts of accommodations, what adaptations should happen, what should be routine?

Jonathan 

Will I start?

Fionn 

Yes.

Jonathan 

Yeah. Okay. Well, people outside of the disability rights world are surprised to learn that there's a hierarchy of disability. Just as we were surprised when we spent a month in Tanzania to discover that there's prejudice among nonwhite people with darker skinned being lower status than lighter skinned. But most everyone working in disability rights is aware of the devaluing of those with cognitive impairments.

They are the uncomfortable element in the disability rights movement because they challenge a central tenet, which is that independence is the most important goal in life. Meritocracy gives rewards to talent and effort, but only certain types of talent count. And no one knows the amount of effort another person puts into getting out of bed or answering an interview question.

So how can anyone judge how much effort another spends to accomplish anything?

Fionn

I experience discrimination all the time, although I'm unaware of most of it. It would be exhausting to keep calm constantly around others. I won a scholarship to do a course that might lead to a certificate in Inclusive Information and Communication Technology. It was a project from the United Nations.

So I thought it was a big deal. Like many things I've done they said ‘Wow! You're you are the first disabled person with a cognitive impairment to do the course. We are really glad to have you.’ They had various accommodations for people with various physical and sensory impairments. But they believed that making allowances for someone who’s thinking is impaired would be wrong.

I said I could show them my competence in real world situations. Teaching people how to use technology to to do what they want to do. Well, they said no.

Jonathan 

Yeah, they expected two thirds correct in the multiple choice responses to  questions in a single sitting over  hours. They said Fionn could have more time, but that wouldn't meet his needs.  hours,  hours of sitting, trying to answer  questions. What he really needed was someone who understands how he thinks to help him search his memory for the answers that he had already learned.

But without such accommodation, he would have to study four or five times as much as anyone else to get passing marks. Clearly, that's not fair.

Caroline

I really agree with what you said about hierarchy. There's lots of hierarchies in lots of things. And I agree with you that learning disabled people are definitely lower down in the hierarchy than those who are not learning disabled. There is this massive hierarchy out there I totally agree with you, and it also pits individual disabled people against each other, which is really, really unhelpful.

Jonathan 

Yeah, it's sad and it's a waste of time.

Caroline 

So what about accommodations? Is that you think the accommodations need to be individualized for the situation. I want to hear more about accommodations, please. It’s great... you’ve got a great accommodation. The example that you've given me. I'm not sure. I'm sure that's maybe not right for every single situation.

Jonathan

No, I think each one does have to be treated differently. And it really... I mean, sometimes an accommodation can't be found. So that's just the unfairness of the world. You know, Fionn is really interested these days in bird watching. Yeah. And in the accessibility of bird watching. Yes. And we know athat paving every single trail, nature trail in the world wouldn't be a good idea even if it were possible.

If the resources were there, it still wouldn't be a good idea. There should be some places that are less accessible. Right. And that that can be said for people who have mobility issues that can be said for people with cognitive issues. Right. So Fionn’s not saying ... well, maybe you are saying that you want to earn a doctorate.

We'll say something more about that in a minute. Oh, yeah. But obviously, like you have to live in the world and there's things that any of us who don't consider ourselves disabled just can't do. You know, I don't think it's right for everyone to assume that they could do everything at every time. But a lot of times we just have to bend the rules a little bit to include a lot of other people.

And it's just kind of mean of us not to be willing to do that. Yeah.

Caroline 

Fionn, do you want to say more. I mean, there’s more questions coming up, wanted to make sure you had the opportunity to say what you wanted to do about accommodations, adaptations.

Fionn 

Well, I think I second what my father says actually. Do you? Oh yeah, Oh, yeah.

Jonathan

Okay, that's reassuring.

Caroline

[...] That’s great, but I'm going to move on to the next question. And my next question is for me, a really important part of your response was about how and I'm quoting it ‘Individuality Cultism is the most disabling part of modern life. We reject the will to operate in society solo with your own individual job bank balance, opinions, identity. Instead finding great value in interdependence, having others do things removes the burden to choose.’

Can you say more about this? And does it only work with your close family ties.

Jonathan

Thank you for your zeroing in on this. I think this is maybe one of the most challenging things that we bring as a notion this pushback on independence perhaps, and also even pushing back on the idea of choice, freedom of choice, that, you know, that's what the advertisers have convinced us that we that we value the ability to choose above all else.

And we forget that there's a trade off in time and in attention when you have to choose between sixteen brands of ketchup, when you go to the supermarket, is that really what freedom means to you? You had an example of being a patron at a restaurant.

Fionn 

Yeah. Yes. Well, when we go to a restaurant, we don't play by the rules. Instead, we might order one plate to share or we might order two things and split each in half or the second person says Okay, I'll have what he’s having no matter what the first person orders.

Jonathan 

Yeah. So this restaurant example is a metaphor for so many other things. Life is exactly twice as easy if you have someone you trust to give half the decisions to. If that person also trust you to make the other half of the decisions, you can practice this with friends and neighbors or even strangers. Yeah 

Caroline

Yeah, the most elite levels of sport  and I think it was is one of the high, high, high tennis players basically. Obama didn’t choose his suit, he just wore the same ... And similarly... there's the same suits all the time. You have to choose, you know, that system here. And if you’re pracitsing for tennis, you need to be doing exactly this every time.

I don't think about what I'm doing, which just removes that choice. What's the point of that? You don't need  varieties of ketchup. Exactly as you said.

Jonathan

When the composer Erik Satie died and they were clearing out his apartment, they opened the closet and found a closet full of brown suits.

Fionn

Yes.

Jonathan 

He owned seven of them, but it was it was all the same thing. So he didn't have to focus on that question. So really, there's something very powerful in me giving over a lot of the decisions that we make daily over to Fionn and you giving them over to me. So obviously the important stuff requires more trust and stronger ties, but whether it needs to be a family member depends on how you define family.

That's why marriage, domestic partners, it's still a popular choice in society because I think most of us see that it's nice to have someone else to sort of partner up with. And there's all kinds of different forms of that. It doesn't have to be a mating game. Of course, it could just be a good friend, someone who you really trust.

And we are pushing this notion further as a social experiment, kind of an art project. So I think the most radically challenging thing we've proffered recently is to explore whether we as one applicant can research a doctorate degree from an accredited university, a single project resulting in a single degree but carried out in partnership. And to our knowledge, this is never been done.

And we do have a professor advocate attempting to convince her provost at the what's it called in Utrecht.

Fionn 

The University of Humanistic Studies.

Jonathan

So she's convincing him to enroll us. So check in a year's time we'll probably be deep in our studies.

Fionn 

Yes.

Jonathan 

Yeah. Yeah. Well, in some ways this is going to sound terrible. There's loads of people who do their PhDs and they men do get a wife to help them because their wife doesn't get on the course.

And it's always been that way, isn't it?

Caroline

I'm not condeming this at all, at least you two are both going to get on the certificate. Yes.

Because you could have that the other way around and lied about it and do you see see what I mean. You could have done it that way.

Jonathan 

No, well, that's a really good point because a lot of the innovations that we've taken, we could keep quiet when we...I mean...we usually fail at things if we attempt them, I think that's normal. But but the things that we succeed at are often things that others haven't done or things that others haven't tried. 

And rather than keeping it under our hat and sort of, you know, chuckling at our success, we like to tell everybody else. We say, look, we found a loophole. There seems to be a way that you can make the difference.

Caroline 

I'm going to argue with your use of the word loophole. I think it's a better, it's a broader way of doing things.

Jonathan

Absolutely. Yeah. But actually, sometimes it's just a loophole. Well, to give you an example, if in Ireland there's a support for employers to hire someone with disability and what we did because we started our own social enterprise, we had to register it as a company and all of that sort of thing. But then when we realized, so Fionn was using it for his disability supports and he was employing me to be a support person, but I could see almost immediately that Fionn was going to be working just as hard on whatever we do together as I was working.

So it made no sense for me to be the only one being paid. So we said, okay, well, we're going to hire you and you'll have the job too. But then we didn't have.... money was tight, right? We're not rich. And this question of, well, how do we earn the income to make sure we can pay your salary? 

And then we found this government grant, which pays back half the wages for any company that hire someone with disability. So we said, well, Just because you set up the company yourself doesn't mean that you can't avail of this government grant. So that's what I mean. It's a kind of loophole, but actually it's entirely above board. We've talked to the people who created the law and they said, I never thought of that, but we love it.

Caroline

Yeah, exactly. Oh, thank you so much about telling me about various loopholes. Thank you.

Jonathan 

Yeah, we I mean, we have ... obviously we have our own code of ethics that we abide by and we also don't want to get caught out breaking the law. So when I say we tell everybody what we do, we're cautious, you know, to a degree. But I think as you might say something later about our relationship to risk.

Fionn 

Yeah, that's right. Yes.

Caroline 

So I want to...I’m really, really worried about time and I would love to talk to you for million years, but I can't do that. So the third question is you said I don't like the term lived experience because it's over and done. I'm not just a human been as opposed to a a human being, not a human been.

Past tense. A collection of experiences, experience. I am so with you on this. I've already thrown out the term experience and you also said being in the moment is a strength of cognition for disabled people. Living experiences are expensive. Please say more. I think it's not only me could learn from you that about that, have you got any hints?

Fionn

Well, I don't hold grudges. It’s not that I don't remember the past. I just don't worry about the past. And I don't worry about the future either. A colleague observed once that my dad and I have a high degree of compass with risk. The name of our social enterprise is Fionnathan because we mashed our name together playfully.

But I'm the first. Fionnathan spoken like American slang, sounds like fear nothing.

Jonathan 

Fear Nothing! Yes!

Fionn

Yes. Which is our motto. And the Irish Gaelic word getting What word can often I will get translates as ‘Discovery’

Jonathan

And we only learned that a few years after we started the social enterprise.

Fionn 

Yes.

That’s Right. Which is what we’re all about. My advice is that you should be optimistic about life.

Caroline

Yeah, I hear you, but I don’t hear you. I hear you but I can’t quite hear as cleverly as you. Do you want to say anything else about this? Because we're at the end of the questions and must be at the end of the time, But I want to make sure that you have opportunity to say anything that you think.

Jonathan

Well, I mean, it's important to say thank you for having us on that. It's a real privilege.

Caroline 

Thank you for coming

Fionn 

Yes. And a pleasure.

Caroline

Yes, thank you for saying that. But I mean, I just said I wish that we could come on for ever! Could you please tell everybody about your website and whether there are any specific bits on your website that you wish everybody to have a special look at?

Jonathan

Yeah, great. Well, the wonderful thing about having a strange name, like Fionnathan, is we're the only Fionnathan on the World Wide Web.

Fionn 

Yeah.

Jonathan

So our Twitter X account and our Facebook account and our Instagram account are all Fionnathan. Yeah, and our website is Fionnathan.com

Fionn 

Yes.

Jonathan 

And our YouTube channel, which I would encourage people to have a look at, is called Fionnathan presents The Happiness Project.  

Fionn 

Yes.

Caroline 

And what would people find on our YouTube channel.

Fionn 

Filmed interviews of me asking famous people and other people too, one question or many questions but more partiuclar question and that is ‘what do you love about your life’.

Jonathan 

Fionn has done over… Well, there's there's over 600 videos; Fionn has recorded more than 700 interviews asking that same question. Yes. Of many people and and a few of them are quite famous.

Caroline 

I’ve met some famous people have really good ideas. Can you please spell your name really carefully? So that I know how to spell it, But I want you to spell out please. aAbsolutely yes.

Fionn

Fionnathan is spelt F I O N N A T H A N

Caroline

So that’s a mixture of Fionn with two N’s and Jonathan. I only worked out recently that went to Fionnathan like Jonathan.

Fionn 

Yeah.

Caroline 

So I'm just telling you that. Is anybody on your interview YouTube thing that you would really pick out as well....no... I don't care about famous people. I want to know if someone have this brilliant idea that you really liked.

Jonathan 

Why I think there was was one really special one early on because Fionn has been doing this for nearly ten years now. Yeah. And we were at a literary festival and we were told, Oh, you should interview this man. He's a retired secondary school teacher of history. And when you asked him, what do you love about your life?

Yeah, he said it would take me ages to tell you everything. A bit like this podcast. And then he said, But, but what I really love is my family, which is a very popular answer. He said, I'm just so fortunate that I've had the life that I've lived and I'm just so happy with everything in my life. Yeah.

And then he said to you, and I'd like to turn the question to you and ask you what you love about your life. Do you remember that the answer you gave him?

Fionn

I do, actually. Yes, I answered him by saying this moment, interviewing you. 

Jonathan

Yeah, it brought him to tears. It was it a wonderful exchange.

It's a really good, really special.

Fionn 

Yeah, right.

Jonathan

So you can you can watch that video. The sound quality is bad because it was outdoors and it was windy and yeah, we don't have a lot of money for the for the project. We just go out and do it.

Caroline 

What's his name because you said it was from the very beginning and I'm going to confess to not going back through all 600 of them

Jonathan

Yes. What was his surname. We're blanking now. Chris was his first name. Yes, but there's probably three or four Chris's over the year. But you'll enjoy all the Chris's so.

Caroline

Oh yeah, that's good.

Jonathan

And you'll enjoy Cillian murphy as well. Even though even though you're not that odd by fame. It was a wonderful interview just to say.

Caroline

Thank you so much to the two of you. I've been looking forward to this for a long time because I actually put this later on because I wanted to make sure we done everything else so that they could say when we've done these bits, I want your special, special bits, which is why we kind of delayed you to number four when I explained that to you.

But that's why I did that. So I have been looking forward to you for ages and you have completely fulfilled all my hopes and dreams about this interview. Thank you so.

Jonathan  

So glad and all the best of luck for the festival.

Caroline

Please come to as much of it as you can. Everybody. This is on sale now and there is free stuff on too. Please go. Thank you so much.

Fionnathan 

Thank you.

Yeah, thank you.