Disability and Shame

Admitting shame is a tough thing to do. Perhaps as complex as the shameful experience itself? Clearly, it is not unique to disabled people. Is there something more with us? An additional new perceived weakness, or from internalised ableism, it is hard to ignore but easier to deny. Stigma and societal attitudes can mean we have it thrust upon us if a person, on finding out we are disabled, says, ‘What a shame.’ 

Two people inspired the topic of shame in our latest show. Natalie Illsey, a disabled creative in the US, emailed us to ask how we feel about people saying, ‘What a shame’. Damon Rose, a BBC journalist, said to Simon that we should discuss how we feel about shame.

We hope you enjoy our thoughts, which were influenced by Natalie and Damon. We’d love to get your feedback on this most difficult topic, so email us at mintyandfriend@gmail.com or find us on social media, The Way We Roll.

Links

Counselling for Disabled People SpokzPeople 

Natalie Illsey LinkedIn

Damon Rose 

Transcript

Announcer  0:10  
This is The Way We Roll presented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn

Simon Minty  0:32  
Hello and welcome to The Way We Roll with me Simon Minty.

Phil Friend  0:35  
And me Phil Friend.

Simon Minty  0:36  
Shame on you, Mr. Friend.

Phil Friend  0:41  
Outrageous listeners. We'll get in a minute or two just how clever that is Mr. Minty. What a segway.

Simon Minty  0:51  
Listener it could be, I think it'd be an interesting show. I'm quite excited about it. We're gonna hear from a listener, one of you lovely people. And then we're gonna hear from another person called Damon Rose, who we love and respect. And this broad broad topic is shame. And when it links to disability, but it's not quite where we're starting. So we had an amazing email from a person called Natalie Illsley. I hope I pronounced that right, Natalie. And she lives in the USA. And she said, Dear Phil, and Simon, I hope this email finds you well. She's saying when I tell someone about my health or my conditions, disabilities, I have had people feel sad for me, and they say I'm sorry, or what a shame. Firstly, have you had this happen to you? And secondly, how do you feel about such comments? She said, I understand the intention might be a good one. But such comments don't sit well with me. And it's hard to verbalise why, though. And she said I particularly don't like the word shame. You answered this, you look straight off the bat, or quick.

Phil Friend  2:00  
I went straight into this. No, actually, I thought what Natalie was raising with some really interesting issues. And we're going to talk about this in a minute in much more detail. But my response to Natalie was really to start by saying, Can you help me understand the context? ie, when were these conversations, how did these conversations take place. And she then wrote back and said, This is how it works. And so just dealing with them slightly. In order, my first response was to Natalie had used certain words in her description of what was going on in the conversations where like, disclose. And so I suggested to her that, we tend to look much more now at sharing rather than disclosing disclosing is this big secret that I'm keeping from you whereas sharing is something that I'm just telling you about. But then the word appropriate, appropriate sharing, when do I share it when don't I, and I have choices, you know, as an individual, I can decide to keep this quiet, I don't have to tell you this stuff. But if Natalie is being asked by somebody, what adjustments she might need, then clearly, it's helpful to share what it is you need doing in order in order for you to be able to do whatever it is you want to do. So there's that if it's a friend, and she talked about friends asking, that's again, different, because friends tend to be asking out of concern for you or something of that sort. And therefore, it's not a loaded, necessarily loaded conversation. So there's that bit. And then there's the people who you meet, who say, what's happening? What, Why, why are you like that? Or, you know, these kinds of? That's true for us that are visibly disabled? Yeah. Why are you in a wheelchair? And for that group, you've got choices about whether you say, excuse me, what's it got to do with you? Or, or why are you asking, Why do you want to know now I tend to take the view, that I'm not seeing how my polio helps them. I think what they need to understand is I am in a wheelchair, and I need certain adjustments to enable me to do whatever and whatever. So that was the kind of crux of the conversation that Natalie posed, I responded to, and she very kindly wrote back again, and said, that had been very helpful. And she would look at these words like sharing rather than disclosing, because that made a lot of sense to her. She could see that. But I think the summary Simon is, the context matters hugely what's going on when this question is being asked, and we didn't really address or at least I didn't the word shame. I didn't really address that in a full sort of way. 

Simon Minty  4:42  
Well and also I slightly hijacked your considered reply and kind of go, there's that word shame and actually, it's someone else saying, what a shame about someone so it's not Natalie alluding to any of that and I think you're right about context. I'm thinking of my great Auntie Emma, who isn't longer with us but when I was 10 how she treated me was no bless you type you know? I'm thinking of when we used to do that little line Forgive me occupational therapist now I'm sure you don't do this. But whenever you said Oh Hello I'm Simon This is big OOH!  OT's had a way about them, didn't they? 

Phil Friend  5:21  
They had a way about them that was actually really annoying because I was I was at Naidex the big disability exhibition once and two OTS were walking towards me. I knew there were OTS because as they had badges on and they weren't looking where they would go and they tripped straight over me in my wheelchair, one fell to the floor, obviously very flustered and quite angry and got up and said, "Oh, this show be so much better if people like him weren't around". And I, I could not believe my ears. I said, I beg your pardon if it wasn't  for people like me, you would love a job. Bloody cheek. But there's there's again, context. 

Simon Minty  6:03  
What I'm trying to say is we picked three OTs and said that's the whole profession. But the essence of it, and it doesn't matter what it's that bit of oooh, it's that bit you kind of where'd you go? 

Phil Friend  6:13  
I'm, sorry. That's the other one, isn't it? Oh, I'm so sorry.

Simon Minty  6:18  
I have there's a quote in a book. I'll have to dig it out for the show notes. And they I don't think its related disability, but it resonated with me. And they said they come out of the subway station and someone says to his friend "It must be very strange being you" and the person says, "Well I have no other reference point. So no, it isn't " And that that's kind of how I feel to other people might think it's strange being me. But it isn't for me, because I know no other. There is a difference again, which is if if I was nondisabled for half my life and then became disabled, that might be that's the consequence, there's a difference there.

Phil Friend  6:55  
You might feel it yourself in those circumstances. you've wished for your old self, you know,

Simon Minty  7:01  
what do you think? Yeah. And there's one that you mentioned about people asking you, why you in the chair, there's the Omeo, which is this sort of segway wheelchair. I've been testing out. And one of the guys Matt, who brought it around, he said to me, one of my favourite things about it, besides it being a brilliant bit of kit and freedom and all that stuff. So people used to come up and say, so what happened to you? Or why in that chair? Now, they come up say, that's an amazing bit of kit. What's it called? Yeah, he said, they don't ask me about my disability anymore. They asked me about the kit. And there's a sort of natural deflection it's a long way of me saying do you think when they say what a shame, they don't know what these people don't know what to say? They think they're being empathetic is, is the classic disability of someone not trying to be horrible. But actually, it comes across as not very good. 

Phil Friend  7:56  
it's a knee jerk. It's a standard repost for for many people. So what happened? Oh, oh, what a shame. It's, I think you're right. Mostly, I think it's meant to be sympathetic, empathetic, whatever. I have been known on occasions to say, Why is it a shame? Because I think some people, again, this is really difficult to, to describe. But you know, when somebody's asking a question, somehow, I think we often I think women can spot men at 500 miles who are being sexist or something. And I think as disabled person has been disabled for most of my entire conscious life, I can detect the genuine but clumsy from the kind of nosy, inquisitive. So that's the one I might say to so why is it a shame then? What makes you say that? Because I think sometimes the if I have the energy, I want to educate them and say no, just as you were saying, you know, I have no other point of reference. This is the way it is.

Simon Minty  9:05  
I think you're right. And the distinction between and maybe this is the same for Natalie, I'm sorry, Natalie, we've taken your email and blown into something is Wait, standby standards gonna get bigger, but there's bit of those who you know, are clumsy, but it's okay. And those who are like, no, no, this is loaded baggage here. And then I even if they are unaware, it's just not appropriate. And they need to be steered in a different direction.

Phil Friend  9:29  
I think the context is really important. And I think the classical one is where you're being asked what you need, you know, so you say I'm a wheelchair user, or in Natalie's case, what she makes is very important perhaps we say this, that Natalie's situation, her condition, her health issues are not clearly visible to anybody. So she has to explain to some people why she's mentioning it in that context. So that's a very different thing from being very visibly disabled. Where people I mean, you know, people feel I've been touched by people who think it's okay to touch me. I think people with non visible conditions, and that was a word we use I use with Natalie to say she talked about hidden and I said no non visible, it's a different way of explaining is less judgmental one and so on. But um, she's opened up a can of worms has Natalie. 

Simon Minty  10:20  
Well,it made me think of, I think this concept of shame, because we've been talking about other people's reaction to us. Yeah, but I think I'm curious about us as differently disabled people, whatever condition or when whatever we have, where the sense of shame is us where we may feel it. And being a bit provocative, I think all of us at some point might feel it. Now, you know, different reasons, and other things provoke, and so on and so forth. So, a little while ago, Damon Rose, who works for the BBC, he's part of the access all editor of the access all podcast. He and I ages ago said we should do a podcast on shame. And when I thought, oh, want me a you Phil could talk about this. I felt a bit guilty, maybe shameful. So I said to Damon, again, could you give us a little summary of what you're thinking? And he very kindly send us a voice note. So we'll have a little listen to this is Damon Rose, talking about the concept of shame.

Damon Rose  11:24  
Hi, Simon. And Phil, it's so Daymon Rose. Just sending you a message about shame. I understand it. All right, shame on the programme today. Sorry, couldn't be there with you. I'm doing various bits, including training with a new guide dog at the moment. So be busy. Yeah, shame. It's a horrible thing, really. But I do feel it. I've been blind now for 40 years. Thank you very much. And so from the age of 13, I, I lost my sight. I think before then, I was ashamed of being of wearing glasses. Because I used to wear glasses because I was visually impaired. Not terribly so. But even so having glasses back then made you feel a bit rubbish, it made you feel you were a lesser human being. And I think I sort of carried that thought over into when I became blind. And I note it even now and I hate myself for I'm a real supporter of disability culture. I, you know, I love it. I think it's really interesting. And it's just great, what we've all achieved. And the different lives we lead to turning that into art, and different social events and that kind of thing. Brilliant. I get off on it, so much love it. The issue here is though, I feel a sense of shame. For instance, I had it just the other day, guide dog training, went to a cafe, sat down at a table. And I sat down, I didn't sit down at an empty table, it was all quiet. And I didn't realise it was somebody sitting opposite me. And I felt this sense of this sort of sense of of shame, really, I felt bad for this person, for having to sit at the same table as a blind person as me. You know, I know, they would have felt awkward about it, perhaps they wouldn't have known what to say, for instance, and again, so an idea that I might have made life a little bit harder for them. Or made them you know, in my heart of hearts, I was I was gonna say then made them feel a little bit sick. So thoughts in my head, I appreciate. And I got up when I realised and went to another table and apologised and just got out of their way as quickly as possible because I knew they wouldn't probably want to sit with me being who I am. Yeah, in their head, they might be thinking, oh, goodness knows what, what he might do. He might need help. He might cause problems. He might do something weird. So it's things like that. I think like that. That that's where the shame comes out. And its awful. I appreciate anyway, thanks for listening. I'll be sending the usual bill for therapy and take care the two of you and I hope you don't feel that kind of stupid shame which in my heart hearts. I really do appreciate is stupid. And I sort of do feel it and don't feel it's this sort of cognitive dissonance you know, I I believe it and don't all at the same time. Anyway, cheerio

Simon Minty  15:16  
Thank you so much, Damon. We both listened to that just before the show that was a second hearing. There's a lot in there. I mean, what's your gonna? What's your thoughts, Phil?

Phil Friend  15:28  
I'm I think that was I nearly said, I think it's very brave of Damon. But I do think it is opening up like that, about an event, a very ordinary event where you're just going to sit at a table and somebody's there and you know, you feel shame for him, sort of impacting on them. I I think that's I kind of get it but I don't it makes me angry. I feel angry for Damon that he feels like that he has a bloody perfect right to see what the hell he wants.

Simon Minty  16:13  
Like truth is occasionally I mean, the only difference is if I'm in a pub or cafe and I can't find a table, I'm gonna go do you mind if I share with you? And people give you that look of oh alright then. Good old Damon doesn't even ask he just rocks up? I think it's a, it's a tale of two halves in the sense of this is my point. I don't think the feeling of shame is unique to him and the level of it. I am I don't know, of course I don't. And we all know brilliantly competent people. But I would maintain all of us at some point have a moment where it really wobbles us, the real issue is a bit occasionally wobbles you that might be life. If it really wobbles you and it's constant, and it's debilitating, and it stops you going out or stops you behaving the way you want, then that's a real issue. And that, you know, that needs change and support and all the things but he says this is, you know, I felt it, I was worried about imposing. I thought they might feel sick. I mean, even he laughs because he's knows how powerful and absurd that sort of is. And at the end, he then he fires back up with a what he says at the beginning. So there's disability culture. And that's for me, that's what he's talking about empowerment. So when I hang out with my people, you feel empowered you like these people get it where we share something, there is no sense of shame. Although I will add, sorry, Phil, I'm gonna talk for about 20 minutes I can feel when I'm swimming pool on my own or Yeah, with regular people, whatever it might be. It is what it is. I'm not I can't change my body. This is it. When I'm with a whole load of people with dwarfism, and I'll dammit, they look way better than me and men, I feel shame. So I feel shame when I'm in competition, but not when I'm not even pretending. Damon's last bit when he fires up at the end, he says this is stupid that I feel this way I know my heart of hearts. This is a stupid thing doesn't stop me feeling it. But there's that bit of going on. You know, why does that happen? I don't really get it because it's nonsensical. But he does.

Phil Friend  18:23  
That's for me. That's the big question. Where's it coming from? And I think some of it links back to Natalie's point about you know, every day, Damon is being judged. He's visibly. He's got a guide dog with him. Those and we talked about this on the show before the sort of micro aggression stuff. That drip feeds you every day. People don't know they're doing it, but they are. I'm really interested in where this comes from. Why do we feel shame? Now, as you know, I've may have said it on the podcast. We've been doing podcasts for so long now. I'm sure I've repeated myself. But my big one is swimming pools. I avoid going swimming because I'm ashamed in quotes of what I look like. So I avoid it. I just don't go now that's easy to do with swimming, because you don't have to do it, you know, but if it was something like, I don't know, getting in a car every day and driving somewhere and I couldn't do that that would have a massive impact on my my life. So why am I ashamed of the way I look? And I think some of that has to do with the fact that we are told that if you don't look like these sorts of things, then people won't like you or people will make fun of you or people will do. I haven't really experienced I do experience staring people staring at me at swimming pools, but nothing more than that. And people haven't come up to me so Oh, you shouldn't be in here. You look like a real wreck. Now that's never happened.

Simon Minty  19:53  
Of course since you stopped drinking since I've stopped drinking.

Phil Friend  19:57  
But the sad no I can't effect of all this was that I would not go swimming with my children. And I've always always regretted that, I'd love to have done more of that. So, Damon, where's it coming from? Where is it coming from in me as well?

Simon Minty  20:12  
Well, when you said if the perception is, other people say, or we feel that we shouldn't look a certain way, we probably brought every single listener who's disabled or not disabled in on that, because I'm sure there's always that pressure. And there's that real tough thing that we have in society. I mean, there's a few of them, or a few people. And actually, I can even think of maybe some disabilities, the way they operate or impairments, it means that you don't care what you look like. And that's it. I mean, he's a little superpower, but one of the better players,

Phil Friend  20:43  
but there are now many, many more role models of people who don't look like everybody else. On TV and films, as you know, your campaigns over many years has been to get disabled people in front of things. I think that has changed for many of us. How you know, to be seeing other wheelchair users, for example, doing stuff at swimming pools, the Paralympics, for example, were incredible body shapes a leaping, winning gold medal, kind of gives you some but I still, when I go to the baths, feel this thing. And I don't know why that is. 

Simon Minty  21:17  
I remember David Weir, who when he did the Paralympics, and he said, You know, I go around the track in London, and in a wheelchair, and I am the greatest, strongest, amazing this person in the world. And I've got 50,000 people cheering me. And then he said, I've got to go and I can't get in the local post office. And people just pat me on the head, you're like, that's the difference as a kind of your it is about whether it stops you doing something or not. And I have a sort of perverse, or maybe it's completely natural. I remember one of our biggest debates was around someone with dwarfism going on a show like Strictly, and the reaction you may get or the ability to do what is needed. And I was fired up. It's almost like if someone says, Well, I don't think you should be doing that because you have a disability. That is the reason I do it. It's the Matt Fraser excuse my language super crip, where he doesn't have opposable thumbs, that makes it hard to grip. He then says, I'm going to be a drummer, because you don't think I can. So there's a I'm anti shame, I'm like, I'm not giving in to you're shaming me, I'm going to fight it to a ridiculous amount that I won't hold back. But it still doesn't stop that shame in other levels.

Phil Friend  22:32  
And there's a there's a kind of distinction isn't there between taking it on and using it as a campaigning kind of thing. And living with yourself at two o'clock in the morning in bed? Thinking about yourself and what you look like or what people think of you or whatever it is. I think I think I get that campaigning bit. Okay, you say I can't do or I'll show you then. And you can. But there's this other stuff, which is far more, you know, turning up the swimming pool and not getting undressed. I'm not campaigning for access to swimming pools at that point. And

Simon Minty  23:04  
but and but you're raising the point of and I get that I'm trying to work out what are the things I don't do, because I fear I may look silly or look less or not be very good at and they'll actually sport was one of mine for years and years thinking I'm not gonna be good at sports. I'm not going to do it. And there'll be shame. But then I thought, actually, no, this is ridiculous. I'm the one who's stopping me. No one else is. And I can do it my other short people, and I'm not going to win everything. But it is really fun or engaging. And even if I don't do very well, which obviously very rare, but when I don't do very well, why? I'm glad I took part rather than so it's when shame stops us doing something as well.

Phil Friend  23:48  
Yeah, I mean, in Damon's case going back to him, does it stop him going into cafes? You know, if it did, that would be terrible, wouldn't it? But there must be moments where people think, and I you know, my swimming pool examples of one for me would be well, I'm just not going to go there. I don't have to do this. I don't have to go through this. But the cost to me, I now realise in terms of my children was actually incredible. Now why? Why do I feel that? What is society doing? Or is it just me? Am I the one that's the problem here? Or is it a societal thing that is continually making judgments about people that look like me? In a kind of negative stereotypical way? I don't I don't I can't identify that.

Announcer  24:37  
This is The Way We Roll with Simon Minty and Phil Friend

Simon Minty  24:42  
Here's another sense of when I feel some shame, and I'll be interested to see what you think of this. So I'm with someone who is dear to me say and for some reason in the last year or two I find it very difficult to put my shoes on. They're always collapsing at the back or whatever I had realised, if you want to do the laces a lot more, it is easier. I just think everything's a slip on and they're not. Anyway. So I've got a shoe horn, and brilliant. So I'm getting to a middle aged person that I carry a shoe on around with me. Anyhow, when I was leaving a very dear friend recently, she said, Oh, let me help you. And so she helped me put my shoes on. And I drove away. And for three hours, I felt shame. absolute shame, that

Phil Friend  25:31  
you couldn't put your shoes on on your own?

Simon Minty  25:34  
No, it's because she did it for me. 

Phil Friend  25:37  
But what's shameful about that?

Simon Minty  25:38  
Um, I don't, I don't want it. Now. Don't get me wrong. Her doing it got my life was so much easier. I think at the time, I said, No, no, it's fine. And she did a quite a good line said, although she didn't quite mean as well, you know, you're crap at this. So I can help and you know, I'm crap at other things, and you help me? And I'm like, Ah, yeah, whatever. You're working out your finances is very different from someone helping you put your shoes on,

Phil Friend  26:11  
Its shame about not being able to do something that most men of your age can do.

Simon Minty  26:19  
I don't think it's even men. 

Phil Friend  26:20  
I'm using men only because you are one and putting your shoes on this kind of. I mean, women put shoes on to of course they do. But what I meaning is it about the fact that you can't do it easily? And then having help? Or what is it?

Simon Minty  26:37  
Here's a better example. When I leave, she's got four steps to leave her house going down. I've got my backpack, I'm not very good the steps for stop. So the deal is now I'd say because she used to stand there and watch me go down and steps really awkwardly. And now I'm like, just we say goodbye, and then shut the door. And now I've got this weird bit where we say goodbye. She shuts the door and I go down the steps. Now I want it that way. Because if she watches me, there's a shame thing going on. There's a I can't do this. I can't skip down the steps.

Phil Friend  27:14  
The idea of you skipping down steps is a revelation that would be fun to watch. Why can't she simply hold your backpack? Go to the bottom of the steps I mean, I suppose in some ways, what we're talking about here is are we in control of the situation? 

Simon Minty  27:31  
Absolutely and independence 

Phil Friend  27:33  
and and that independence thing. So so I'm in charge. If I say to your friend, take my backpack when I negotiate the stairs, you're you're driving that agenda if they take your backpack off you without so if they put your shoes on for you without the consultation bit, there's obviously that's a very different dynamic, but I'm still trying to understand why is and I feel it too. I don't have the answer myself. Why we feel ashamed about something like that.

Simon Minty  28:01  
Who says the backpack slightly the red herring it doesn't make doesn't make you even without the backpack? It would still be difficult for me. So it's about I don't want someone to watch me struggle. Oh, okay. So I can do it. I can do it. And I can put my shoes on. But it takes time. .

Phil Friend  28:19  
Yeah and you're choosing to struggle, rather than allowing someone to help you.

Simon Minty  28:29  
Because I still think I can I can do these things. They just take longer. There are so the cup that is on the top shelf. Can't do that. I have no shame in asking someone in Sainsburys Maybe that's part of it as well. Maybe I have a different the stranger passing me the baked beans that I can't reach. No shame at all. I mean, it's bloody obvious. I've got to ask about help i Otherwise I go without baked beans. But if it's someone you're very close to does it feel a bit different?

Phil Friend  28:54  
I've got a kind of correlation. I'm kind of getting closer to your shoes. Uh huh. I've got older, I've had several issues over the last 10 years where muscles have not worked or I've snapped my tricep in my arm irreparably, which means I can't use my arm like I used to. So now every day, Sue has to help me put my jacket on my jumper on my shirt. I can't do that without physical support. And it makes me bloody furious, shamed. I'm really angry. And I'm angry in part because I should be able to do it. And I used to be able to do it. And it's a frequent reminder of the ageing process, and all of that. So mine tends to be more angry in that situation. That's not the same as saying goodbye to a dear friend going down the steps and not wanting to be watched doing that. It's not the same sort of thing. But the nearest I can get is this. I need help now to dress to a degree and it really really, really annoys me.

Simon Minty  30:01  
So obviously lay back on the chaise long, because we're going to unpick this in a very Freudian way, it's probably worth because I looked to pick the up shame. This is Wikipedia. Of course, shame is an unpleasant, self conscious emotion often associated with negative self evaluation, motivation to quit, and feelings of pain, exposure, distrust, powerlessness, or worthlessness. So me not being able to go down the steps. I'm not angry. I'm like, I can there's no way I can do this. It's just it is what it is I have to take I can do it takes me time. I'm not going to fight that. Because I can't. I'm being really ridiculous. But you're, you're skipping shame, just going straight into fury. 

Phil Friend  30:49  
That's about right that's my usual style! 

Simon Minty  30:51  
 And in one way, that's great, because you're like, I'm not going to feel bad about this myself. Oh, I'm not going to judge myself less. For something I can't do anything about. But you're but you're still angry. Because you because you gotta get help, or because you can't do it. I don't know,

Phil Friend  31:09  
Mainly because I can't do it. I think Sue is my equivalent of your dear friend, it's that kind of the relationship is a good relationship. I don't have any issues about control or any of that stuff. Sue is brilliant. And she does everything she can to be helpful to me. And she knows how to do that without overruling what I'm doing. It's my frustration at not being able to do something that I used to be able to do that links a bit to the newly disabled person who used to be able to do all this stuff, and now can't, and feels to some degree what I feel, I guess, very angry about that. And ashamed. And I'm not feeling that shame that over this particular example, I am about the swimming pool.

Simon Minty  31:53  
exposure was the word they had in the definition. 

Phil Friend  31:56  
Yeah, or feeling of what's the word is several of self worth

Simon Minty  32:02  
Yes you raise a good point about the new to and being disabled for a long time and the new to I mean, we see it, there's people who become new to disability, and they become the absolute over zealous, I mean, they just want to do everything to prove. And they I mean, they've been more than Matt Fraser , and your blooming drumming, they're just beyond anything, because they just got to double. Or they just go into the slump. I mean, we're generalising both ends. I think what we're trying to say is, even if you've had it for a long time, or if you have a disability for a long time impairment, it you can still have moments, even if, Both you and I do career development programmes for people where we talk about some of this. But even when I'm doing it, you know, I know every model, I know every theory, I've spoken to 1000 people about this bout deep, deep, deep thoughts. But it doesn't stop me occasionally go or sort of have a wince, or a moment of shame or a moment of. And here's a close one every short person I know says if someone who's an adult average size, makes a comment and has been sure we're like screw you. If a child says it, we are of course their child's are inquisitive. There's no malice, there's no baggage. And I'm totally with that. But I always know there's a couple of percent of me that has to manage the situation. Because it could, shame could creep in Because suddenly, I'm now the attention, the focus of attention with this young child that is curious about me. And we all have to manage it. And it's in the vast majority of things, it's fine. And it is quick. And it's brief. And we've done. But there is a moment, there's a moment. Oh, so there's that little moment of me like 55 year old man speaking to eight year old, as though we are equivalents. Don't get me wrong, half of me loves it. Because I'm like, How lucky am I that I get to speak to a child like this? Because child children don't speak to other people like this. They'll speak to me like that. And I've got a really special relationship bond is almost a privilege. It's special. But the flip side of it is it's like, oh, this is a bit kind of weird. And I'm an adult. And I don't know, there's shame in there somewhere 

Phil Friend  34:19  
Back to the context. Because what you're doing in that situation with the eight year old child, for example, is choosing to see it as a positive. What a privilege it is that I'm able to talk to children like this because most people don't. You could choose to be very, very ashamed of the fact that you're being talked to in this way, but you're so I'm a big fan of this context stuff. If I can see it more positively, then that helps me feel less shame, or less worth worthy or whatever it is. I'm really interested to in your shoe example because 5 or 10 years ago, you had no problem putting your shoes on.

Simon Minty  34:58  
 I smaller feet!   

Phil Friend  35:00  
Well, but you're, you're in my putting my jacket on group. You know, I'm losing function, I'm loosing the ability part me my case, it's ageing, whatever. So, disability which we both been managing for years and years and years, when you were an adolescent, you had to manage your disability as an adolescent, and what that all meant. Now you're managing it as a middle aged man who's having trouble with the shoes, but it's still new. It's not this is a new experience. How do I manage this one, you've been managing eight year old children, I'm guessing for a very, very long time and you've got I suspect over the years, you've got better and better and better at doing that, both for you. And for the eight year old.

Simon Minty  35:43  
I was in the supermarket yesterday and little boy was looking at me mum wasn't even aware. Yeah. And I winked at him. And he smiled, and then off we went. And that was it. And I liked that I just kind of got a little thing little secret. The adolescence, I think I was either blessed or very naive, probably a bit of both. Because I don't remember feeling shame about my height when I was a child never ever felt it. until puberty, getting rejected, not getting a girlfriend, all the things that I saw going on around me. The fact that I went off and did sports on my own the fact that there were handrails to get me around the school, all the things that I had, I never felt shameful about that, as I said, Until relationships and personalised. Bollocks. This isn't this is quite difficult,

Phil Friend  36:30  
but then you know, puberty and adolescence someone who thinks their nose is too big, you know is as painful contextually for them as your height might have been for you but wasn't a well,

Simon Minty  36:40  
Don't gaslight, me, Mr. Friend don't gaslight me, my struggle was real.

Phil Friend  36:40  
I think all of our struggles are real. But and they are, they actually are. But I think what we're talking about here is what I can't get my head around with Damon, for example, is why he feels shame about being on a table with somebody who he then thinks might not want to be there because he could embarrass them or need help or something like that. Incredibly open from Damian, but I can't get my head round. Because I don't feel like that when I go to a table if you like so, no,

Simon Minty  37:18  
but I'm still it is. Damon's example is his specific one to him. And it happened very recently. Yeah. And I took that as it never goes away. There are little moments it pops up. And I think when my arguments still would be we each have our moment or our, our Achilles heel our  what's that? Well, they always just got a little weak point wherever you can be explored. I'm thinking of Star Wars now and the little opening on the Deathstar. So we are the unbelievably strong, yeah, vulnerable. But if you fire something out that even if they don't know, they're firing at it, it pierces and it hurts and that armour wobbles a bit. Dammit.

Phil Friend  38:00  
I know that I definitely get I can understand that it makes perfect sense that there are moments in your life or in your day, where somebody just says something or certain way, and you fall off the horse.

Simon Minty  38:14  
And here's the point, which is everyone has that in their life. And as you said, Well, it could be a little vulnerability or whatever everyone has it regardless of disability or not. But is there something extra with disability? Because how disability is seen in society? Do you already start from a certain position, whether that's a inability or a weakness or vulnerability or the crappy words that we hate? Is there something extra compared to the person? I don't know?

Phil Friend  38:43  
Well, there's no doubt but Damon talks about the culture, didn't he and there is a culture around disability, which many of us, including him, are trying to dismantle ie, the feeling sorry for the charity staff. We're unemployable. All of those. We can't be on telly, you know, all of that stuff. For hundreds of years. disability has been seen as a no, no, you don't want it. And if you've got it, you want to get rid of it. Those are the two kinds of broadly speaking. So here we are living in a world which generally speaking, I'm being very general doesn't want us. I mean, just going back to something recently, Matthew Paris is in the Times recently talking about the assisted suicide debate, which we debated last time we met. But the line he's arguing for is that there should come a point where we recognise that we're a burden and we should just shuffle off get out of the way. Now, he wouldn't be saying that about other groups, but he is saying about older people or people who are disabled. Now. If that's true, how does that fit in with you and I feeling shame? I think it's huge. I think there's so much around us that says somehow we are less than We're not valued in the same ways as others, that we are pitiful that we are deserving of their charity. All of that's been around for hundreds of years. And in many ways, it's a really difficult one because people being thoughtful and caring and supportive, is the human condition. We want that. But we want it somehow under our own control. And Damon's coffee table example, somehow left him feeling very vulnerable, didn't it? 

Simon Minty  40:28  
A couple of phrases that we need to throw in in this one is the internalised ableism Yeah, and that's what some would say. That's what we're doing. We are putting it on ourselves because of, there's ableism, where people treat us less favourably or the world isn't set up for us or however you want to interpret ableism. But there's the internalised where we are thinking, well, we're not good enough, because we can't there's must be bits of that, that we will get a different points and we want to push that away. But But Damon also said that cognitive dissonance, which I do like and there's these two things can be happening. They're contradictory. But you can't compartmentalise them because you have to. But occasionally, you can't. And they, they clash, and you're like, Whoa, this is a impossible position. Because I know I'm valuable. I know, I'm great. I know, I'm this that and the other. And yet this is happening in demeaning me or shaming me or whatever it might be. And that's really hard.

Phil Friend  41:23  
But I think and he made a big joke at the end did he not about  therapy. I think that's quite a serious point, actually. Because I think if it's your internal world, that you're finding really difficult to manage. And this is where the personal development programmes kind of fit. To sit down with someone and explore whether you are the problem here, ie, your way of seeing things is making it more difficult for yourself. That's one side of this agenda. The other side is the one Yeah, absolutely, which is about the world around you and what it's doing. And I think using Matt Fraser as an example, Matt kind of does both doesn't he? He goes out and drums regardless of what world the world thinks of him, and I'm guessing inside, he's also doing some internal stuff about how he manages how he feels about himself in the world. If you can do both, and I think campaigners often are people that are doing both they're taking on their internal world and challenging it, but they're also taking on the world around them and challenging that as well. It's bloody exhausting. It's incredibly tiring.

Simon Minty  42:28  
And I will we can stop at some point, although I do love this as a topic, because I think there's so much in it. But um, I have a counsellor. And I don't know how long I've been seeing her eight, nine years. And you know, there'll be periods. I don't see it for a bit. But at the moment, I see her every two or three weeks. And I think it was about five or six years in. We were talking about something and it was contextual. And then she said, Do you think that's could be anything to do with your height? And it was the first time she had mentioned it. And obviously I've stopped the Zoom call him I've never spoken to since. But it and we explore it from time to time, I suppose the flipside is if I go and see a counsellor or therapist, and I go, Hey, I'm having a really tough time. And they think that's because you're short, off FFS What the hell are you doing? Because it's too easy to say that's it. And I'm not prepared to do that. But I say my, when I do the Career Development Programme, and I believe this, truthfully, when I was not part of disability groups, people with dwarfism, and I was just cracking on with my life. I thought that was a position of strength. Because I'm not, I haven't given up I haven't given in, I don't need the support group. And then you get to an age ago, you idiot, you're absolutely muppet. Because then you go and hang out with these people. And you go, Oh, this is where the strength lies. That's Damon's bit about the culture, the identity, the empathy, the understanding the joy that comes from it, because you can have those conversations, which I've had with people like Matt, where they're quite deep and personal, I'ver had them with you, these are really, really deep personal things and people get you. But then you also go out and take on the world, you know, you go and read a book, or you go and watch TV or whatever you want to do. And I think it it's the hardest bit for someone who is masking, hiding, avoiding anybody who's like them because of the shame or the embarrassment. And I don't want to be part of it. And then once you open up a little bit, I always think it's still bumpy, but I just think you suddenly get more strength from it.

Phil Friend  44:36  
I've got to you've made me think of two things. Two kind of things are where  I you know, the Star Wars vulnerable bit. I when I started out doing disability equality stuff we both knew a guy called Chris Davis who had very, very severe cerebral palsy speech was very, very difficult, extraordinary brain and And I was doing some work for a client and he wanted to join me. He wanted to be part of it. And I was ashamed about having him because I thought they wouldn't like him. Because he was too disabled. I have never, ever forgotten it. It was the most awful experience. And it was Sue who said to me, You call yourself a disability rights person? You're doing that to him? How the hell do you sleep? Yeah, I mean, it was awful. And I'm going, I've told you, you know this, because I've told you before, I've never forgotten it, because I was ashamed of being with somebody who was disabled in a very, very severe way. And he was the one who always used to say to me and you, there is a hierarchy. I am too disabled for most employers. Yeah. Yeah, you're the acceptable face of disability. That's one example. The other one, like you, I was going through a mentoring process with a young guy who half my age almost. He said to me, can you write me a business plan? I said, No, I'm too busy. I can't do business plan too busy doing the business. Anyway, he kept on and on. And I kept saying, no, no, no, no, no. And then one day, he said to me, because he knew me quite well, he said, Is this because you went to a special school and you don't think you can write. And I went, Whoa, unbelievably on the money. I've always had a thing about my writing skills, always. And I've avoided writing to the best of my ability, whenever it has been called upon. It's a real I have to force myself to sit down and write important, I don't mean emails, I'm talking about papers, stories, whatever it is. One is an external thing about the education I received and where it left me, it may have left me feeling very inferior. Alongside my peers, I felt very uneducated, not very skilled, all of that stuff, and ashamed. With Chris, it was very different. It was a personal, I don't want to be associated with this lot. It links to your point about not being both make me feel the Chris one makes me feel terribly badly about what I did. I did. We do get on terribly well, after all this. But the one about writing I'm still living with, I still have a real problem. Because I think people will read what I write and thing is a load of crap. And therefore stops me doing it. But I do write, you know, I do you and I've written stuff together. But

Simon Minty  47:36  
it's never stopped you editing anything I've written.

Phil Friend  47:45  
I can pick holes in other people's stuff. But it's interesting how you talking about your therapist, and that kind of thing? How Yeah, there are bits of all of us. And I think I'm a pretty together person who gets on with most things pretty well. But yeah, I was like somebody and I go, Oh,

Simon Minty  48:06  
the Chris Davis thing. And I totally get that in a in a different way. And I know, it's like hanging out with other short people. And suddenly you get stared out and you're like, well, they're staring at me, because there's all these others. And you're like, No, that happens to you on your own, you just manage it differently. And so it's that association that you think is going to make it even worse. Whereas you can blog your way through, it was almost like you not wanting to be too associated with it. And I can see why you feel regret because that's a crappy place for him and for you. But I don't think you're alone in those sort of clumsy things that we do.

Phil Friend  48:39  
I think, though, sorry to interrupt you. But I do think it's important. I think what I haven't done I have done largely with Chris is to put it behind me now. Let it go. I can't change it. I regret it. And I did do my damnedest to put it right. But I have to let it go now was the writing thing it still. So are we able to let some of this go the shame bit? And if so, how do we do that? And maybe the answer is through counselling and various other things, personal development courses. How do I manage the one that's continuing is a slightly different ballgame.

Simon Minty  49:15  
And we have a couple more thoughts but you can stop or you can stop me. Russell T Davies, the guy who rebooted Doctor Who the writer and he needs to see in and lots of other brilliant shows. And he was on that imagine programme not too long ago. And one of his final quotes was he said there's a real difference writing when you know it's going to be made. When you're writing and you're just doing it you don't know you judge yourself all the way through. But when you got the straight look and they they're gonna make it and it makes you choose you're confident you'll you'll be way more bolder than you would have done because you know what's going to happen? Because there will be properly sensible people listening. The Deathstar is the thermal exhaust  point, that was the significant flaw in the Deathstar. So what we're talking about this thermal exhaust port of all of us, where it's just a little vulnerability spot and if someone kind of just prods it fires the arrow or the laser it can get through and cause a bit of damage. Actually, it's not a good analogy because the Deathstar eventually blew up. And I don't want us to blow up.

Phil Friend  50:24  
But I think what we can both agree is that we all human beings, I suspect have that point in them. It's just and very often it gets pressed without the person pressing it, realising they have. That's the point I feel that my most vulnerable when they're not aware I am. You know, I suddenly go Christ. It's anyway. Or that was an epic conversation, Mr. Minty

Simon Minty  50:52  
There's a little top tip there, which is, when you are when when sometimes you just think I'm not gonna say anything now. But you look really powerful. When you don't say something. Sometimes, people are like, Oh, my God, they're just sitting there thinking they must be really on this rather than go. I just don't want to say something in cazse , it might shame myself but

Phil Friend  51:11  
yeah, I think, but then, of course, for the rest of that day, often in my case, I'm thinking about it. I'm replaying it and, you know, so but they're blissfully ignorant half the time. Well, thank you, Damon. I mean, what a what a interesting subject that is, I

Simon Minty  51:32  
would Oh, we both we'd love to hear from you. Because I think some of the things we said might have resonated but the others you'll have different thoughts or different experiences. And we'd love to hear from what you think about this word shame, particularly obviously in relation to disability and how difficult it can be or if you nailed it, how you kind of

Phil Friend  51:52  
You can help us. 

Simon Minty  51:55  
Exactly, exactly. 

Phil Friend  51:58  
Okay, what if you do want to write to us or contact us in whatever way you want to do that? Email address is mintyandfriend@gmail.com.

Simon Minty  52:07  
We are on Facebook. We are on Twitter x sorry. Instagram, LinkedIn. Lovely see you and thank you for listening everybody.

Phil Friend  52:17  
Take care everyone and see you soon.

Announcer  52:19  
This is The Way We Rollpresented by Simon Minty and Phil Friend. You can email us at mintyandfriend@gmail.com or just search for minty and friend on social media. We're on Facebook, Twitter and LinkedIn.

Transcribed by https://otter.ai