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Ep. 28: How to deal with loneliness when you have a disability
113 Plays3 years ago
Nathan Todd was born with cerebral palsy. He describes so charmingly how this affected him growing up.
As he got older, he began to experience loneliness as a result of the labels others placed on him, including the adults around him.
Nathan is now a connection coach, helping his clients to find meaningful connections with other people and combat loneliness in their lives.
Nathan also campaigns against the labelling that happens to people with disabilities under the hashtag #nolabeldefinesme.
Where to find Nathan
- Instagram @therealnathantodd
- Clubhouse @realnathantodd
- YouTube No Label Live
Listen to the podcast for tips if you're feeling judged, on the outside, or alone - whether you have a disability or not!
More teenage parenting tips:
There are lots more episodes of the Teenage Kicks podcast. You can email me on [email protected]. I’ve also got some posts on the blog that might help parents with other teenage parenting dilemmas, so do pop over to Actually Mummy if you fancy a read.
Thank you so much for listening! Subscribe now to the Teenage Kicks podcast to hear all my new episodes. I'll be talking to some fabulous guests about difficult things that happened to them as teenagers - including losing a parent, becoming a young carer, and being hospitalised with mental health problems - and how they overcame things to move on with their lives.
You can also find more from me on parenting teenagers on Instagram and Twitter @iamhelenwills.
For information on your data privacy please visit Podcast.co.
Please note that I am not a medical expert, and nothing in the podcast should be taken as medical advice. If you're worried about a teenager, please seek support from a medical professional.
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Transcript
Introduction to Teenage Kicks Podcast
00:00:05
Speaker
Welcome back to the Teenage Kicks podcast where we take the fear out of parenting or becoming a teenager. I'm Helen Wills and every week I talk to someone who's been through a difficult time as a teenager but come out the other side in a good place and gone on to make a real success of their lives.
Introducing Nathan Todd's Story
00:00:27
Speaker
Does your child have a disability? This week I'm talking to a remarkable man, Nathan Todd.
00:00:34
Speaker
who's lived with cerebral palsy all his life. One of the things you'll hear all the time is, well, where are all the people with disabilities? I don't really see them. And often it can feel like you're the only disabled person in a room a lot of the time. Nathan has some fascinating things to say about how it feels to be lonely when you have a disability.
Changing Disability Perceptions
00:01:01
Speaker
and how to turn that around and reach out to the people who can help to change your perceptions of your own life. He's also doing some brilliant work on changing the label of disability to help make sure that people with disabilities or difficulties in their lives are afforded the same chances as everyone else. So Nathan, welcome to the podcast. It's lovely to have you here.
00:01:29
Speaker
Thank you so much for having me. I'm excited to have this conversation because I know being a teenager is not easy and being a teenager with a disability just adds another layer to that whole experience of life.
Isolation with a Disability as a Teen
00:01:45
Speaker
And even when you're not a teenager with a disability, sometimes you feel like you're the only person going through something.
00:01:54
Speaker
if there's anything that my experience can provide and help some kid or some parent who's listening that's what I'm here for today. Oh right just you saying that that being a teenager is not easy for any teenager and not knowing that there are other people feeling the same as you
00:02:18
Speaker
It's massive when you've got something going on in your life that isn't the standard, that isn't the kind of, I'm doing air quotes, normal, because there's no such thing as normal in my book, but haven't we all had times
00:02:33
Speaker
Well, I know you've had lots, but I've had times, and I can think back to them now when I was a teenager, when I've just felt like nobody is the same as me. No one gets me. No one understands. Not just my parents, but my friends. No one gets it. And everyone has times like that. And I guess that's where the loneliness sets in, right?
00:02:54
Speaker
Yeah. When you just, you feel like someone doesn't understand they don't see you or they don't hear you. Those are major factors to creating that experience of loneliness. And it's, it's so interesting because loneliness is a human condition. Yes.
00:03:16
Speaker
It's there to remind us that we are meant to connect to one another, and that we have these shared experiences.
Breaking Loneliness: Reaching Out
00:03:27
Speaker
The problem is that we get caught in a cycle where we don't think anybody wants to hear our problems.
00:03:36
Speaker
And so we just keep repeating that story to ourselves. And what we want most in the world feels like it's impossible for us to do. So if anybody right now is sitting there and they're feeling that sense of loneliness, what I would tell you to do is do the exact thing that you're fearing the most. And that's reaching out to a friend that you trust and you feel safe with.
00:04:05
Speaker
Oh my goodness, you've actually answered the question that I ask at the end already, but that makes so much sense to me. The thought that, because you do, you get stuck in a cycle, as you put it, of thinking, well, I can't tell anyone this, I can't talk about this, because it's actually not very significant, and yeah, everybody feels like this, so I just need to suck it up and get on with it. And then,
00:04:32
Speaker
you just closet yourself in this place that you can't get out of and yet if you spoke to someone else the likelihood is they kind of stick their hand up and go oh yeah me too
Visual Exercise on Loneliness
00:04:42
Speaker
Yeah, 100%. One of my favorite things to walk people through, I've got an exercise called bringing your loneliness to life. And the whole purpose is to create a visual representation of that feeling for you. And everybody has their own version of that going on.
00:05:06
Speaker
it may show up a little bit differently, but we have it all going on. And the beautiful thing is we also have exactly what we need to step out of that. So what we do is we walk through, okay, here's what my loneliness actually looks like, what it feels like. Like I've had people say, it looks like a chair that's sitting in the desert.
00:05:32
Speaker
Wow I've got goosebumps thinking of that because I can completely see it. Yeah and then on the other side of that you have people that talk about connection which is the solution to the problem and they're like
00:05:50
Speaker
I see bright light, bright colors, and I just see a happy, happy place. I've had somebody say they've seen something like an angel. And it's just, we have all that within us, but it takes somebody actually talking about it to realize what's going on. Right.
00:06:12
Speaker
Oh gosh, I can see that because you'd have to dig really deep. We're so conditioned, aren't we, to feel the negative? In fact, I've done some reading on this recently. It's human nature to see the worst because that's how in a life or death situation we protect ourselves and we stay alive. It's survival, it's instinctive, isn't it?
00:06:38
Speaker
and so actually you've got you need to dig quite deep to get to those pictures of loveliness that you just described.
00:06:48
Speaker
Well, and the thing is, and here's the beautiful thing about your audience. Being younger, the beautiful thing is you don't have as much stuff stacked on top of you right now that somebody like myself who's in my 30s or people who are older, we've got all these life experiences, all these labels that are stacked here. And as a teenager,
00:07:14
Speaker
you may have some already but you don't have as many so you have an opportunity to peel it back really quickly and you have a longer time that you can have that tool so you can regulate what's going on around you because what I've found is most of the time the stuff that sticks with us is from zero to seven
00:07:42
Speaker
okay right okay that is really interesting so i'm just gonna take this chat a little step back if that's all right with you Nathan and um i'd like you to just explain for the listeners what your background is as a child
Nathan's Early Life and Diagnosis
00:08:01
Speaker
So we've already said you have cerebral palsy. Are you able to tell me how that was diagnosed? How long you've had that? Where did it all begin for you and that naught to seven significant period of your life? Yeah, day one. Okay. One trauma entering the world. Right. I was born four pounds, 10 ounces.
00:08:28
Speaker
And I was born eight weeks premature. And I spent, I think it was something like four to five weeks in the NICU, so the instance of care. And I wasn't diagnosed until I was two. Oh. Yeah. But I've had cerebral palsy my entire life. It just took, and I know the parents will relate to this a lot.
00:08:57
Speaker
It took my mom continuously saying, hey, something's not right here. Nathan's not doing this. And having to keep going back and saying that there's something going on because I wasn't diagnosed for many doctor's appointments with anything.
00:09:21
Speaker
And I know that's one of the beautiful things about actual labels. When I talk about no labels, one of the beautiful things about labels, in this case, a diagnosis, is that it provides relief for a lot of people when they actually have something that they can say.
00:09:43
Speaker
Oh, here's what this is. Yeah. Now, how do we move forward with the situation? What are we going to have to prepare for all these things? And one of my favorite stories to tell is
00:10:02
Speaker
When I was about four, I just had surgery a little bit before this and it was, they cut on my spine to release the nerve things like kill the signals going to my legs because they were so tight that they were crossed.
00:10:23
Speaker
with each other and it was making it impossible for me to walk. So my parents made the difficult decision to have this surgery but I have a little brother and so he's just young enough compared to me that I had the surgery it was successful and we were both learning to walk at the same time.
00:10:52
Speaker
But my mom tells the story of we would go to this park and it had a huge hill. And my brother just wanted to go walking down the hill. And he's like, yeah, Nathan, let's go down the hill. And my mom was trying to explain my balance and all that. And he said, oh, don't worry. I've got him. I'll help him down the hill.
00:11:18
Speaker
So we take two steps and we just go rolling down the hill very far. But I always remember that and it's something that's like, that can be seen as a hard situation for all of us. But sometimes you just gotta take a life for what it is and find the funny moments within it. Isn't that just the truth?
00:11:47
Speaker
really hard to do sometimes but actually the more people I speak to who have grown up with a problem, a disability or something terrible has happened to them, the more their sense of humour are just, they make me laugh so much, the horrific things that people have experienced and yet
00:12:08
Speaker
their sense of humor is so good and they have funny stories to talk about actually their disability or their condition, they find ways to laugh about it. And that's going back to that, what you were saying about how we've all got it in us somewhere to just dig deep and find ways to get through and humor's such a common one, isn't it? You need to laugh about life. Yeah, and as a teenager,
00:12:35
Speaker
some stuff that happened to me was right when I was entering middle school, my family moved. So I left all my friends behind and moved to a new place. Once I started middle school, I got bullied in sixth grade and it was actually not by students, it was by administration.
00:13:05
Speaker
wow and so that led to my mom making the decision to pull me out of school and homeschool me and that lasted for a very short short period uh because we both realized that this wasn't gonna work for either one of us like it was it was not my mom was not
00:13:35
Speaker
supposed to be a teacher and I was not supposed to be her student. Yeah, if you're not meant to do it, you're not meant to do it. Yeah, and you never know that without doing it. Let's say that. But we actually had a conversation where we were like,
Coping with Bullying through Homeschooling
00:13:55
Speaker
I don't
00:13:56
Speaker
I think this is working. I need to be back around other kids. Like that was one huge thing for me because back when I was doing it, there wasn't really, I know now there's a lot of associations and all these other things where you can meet other kids who are being homeschooled at the moment when that was happening for me, that didn't exist very well. And I mean,
00:14:26
Speaker
The internet was a newer thing, right? Gosh, must have been really hard. So you didn't have problems with the kids at the school though. It was more the staff in the school. That's shocking. I talk about this a lot. Like the reason why disability is so hard from my perspective is
00:14:51
Speaker
It's an in-your-face circumstance a lot of the time that people don't talk about because if you were to talk about it, it's you confronting a dark part of yourself that
00:15:12
Speaker
you don't want to confront. Like I really think that that's the biggest reason why when people see people with disabilities in the world, they often shy away from having conversations because ultimately they're like, I don't know what I would do if that was me.
00:15:35
Speaker
Yes, I was waiting for you to come to the point about why they're like that because it is so so obvious and actually I don't like it about myself but I find it very difficult to approach or speak to to know how to and it's nonsense really isn't it? It is just speak to everybody like
00:15:56
Speaker
they're like you but maybe they need the door opening for them or they would like the door opening for them and they don't need it but just offer nicely but honestly the wrangling i go through before i make that decision to go and talk to some it's it's horrible i hate that about myself but everybody has it and you're so right it is the fear well sometimes it's the fear of
00:16:26
Speaker
getting it wrong and not knowing how that will go down so I'd be interested in your take on that and I hate myself for even saying it and asking that question but you're right a lot of the time it is the fear of well yeah that could never happen to me so I'm just going to close that door and stay away from it and you rationalize and I know this because interestingly
00:16:52
Speaker
somebody I know has children with all sorts of complicated needs. And one of those is diabetes, type 1 diabetes.
Facing Judgment and Assumptions
00:17:00
Speaker
And my daughter has type 1 diabetes, but before she was diagnosed, I used to look at that family and think, ah, there must be something not quite right with the matching of the chromosomes in that family. You know, we're fine. We've got two normal kids. That will never happen to us. And then I could box it up and put it away and still care about that person, but not think too hard about it.
00:17:20
Speaker
And then of course, my daughter was diagnosed with diabetes and I started to be treated in exactly the same way. And that's when I realized what I was like and what most people are like. What is your take on all of that? Sorry, I've talked such a lot there, but tell me your take on that. So I think it's like most things in the world and it's this, it's nothing that's mind blowing, but
00:17:50
Speaker
It depends on the person, right? And I'm talking about if you are talking to a person that has a disability, it's going to depend directly on them and what their life experience has been and how much we'll say emotional intelligence training that they've gone through.
00:18:19
Speaker
because there's a thing that I call the angry disabled person syndrome. And it's where we allow all the built up stuff
00:18:32
Speaker
that's just like the stacking that I talked about earlier, that's just sitting there and nobody's taught us how to deal with it, how to manage it in a better way, because I'm not saying that you don't have a right to be angry, but oftentimes I think you get the person who kind of blows up in your face because they're like, okay, I've talked about this,
00:19:01
Speaker
a hundred times today. I don't want to talk anymore. Yes. But you as the party on the other end of that, you have no idea that that's happened. Yeah. So I think I personally, if we were talking, I have a responsibility that I feel myself to represent
00:19:26
Speaker
what it means to live with a disability in a certain way. So when it comes to communication, I've said there are two things that I believe that I'm responsible for. And first, it's creating that environment of safety so that you don't run the other way.
00:19:49
Speaker
And then it's also my responsibility to go first. Like you don't need to be the one to go first. And if you want to have the narrative told the way that you think it should be, then you should be the person going first and not waiting for people to ask the question. Hmm.
00:20:13
Speaker
Yes, that is interesting. And I really appreciate you saying about the angry disabled person. And I think that happens... I don't know how... If you're diagnosed with something partway through your life, I think you do go through a very difficult time of feeling like the world is
Frustrations from Societal Misunderstandings
00:20:38
Speaker
unfair. People aren't responding to you in the way that you need them to.
00:20:42
Speaker
It's their fault, you're angry about it and you do have to work through that to the point where you can accept that people aren't responding to you the way you'd like them to because they don't get it and they don't understand and you do, you can make that easier.
00:21:02
Speaker
by not being angry but actually that's a really tough call because it you know it's it isn't fair it's not fair life should be easier and i still with our situation occasionally now with seven years in i still occasionally get on facebook and go
00:21:22
Speaker
You all need to know this. And then some people are a bit, ooh, hello. What's going on with Helen? But then the really good people reach out and say, I saw you weren't feeling too great today. Tell me about it. And I feel like the people who don't have the disability or the condition or the problem also have a responsibility to notice
00:21:46
Speaker
what somebody else might be going through and not to assume they know what it is and understand it, but to ask questions. Yeah. Um, man, this hits home right now for sure, because I know someone going through a similar situation and
00:22:09
Speaker
It's so interesting because I think we as humans have a hard time being able to say, hey, I don't really understand.
00:22:22
Speaker
what's going on here, but I'm here for you. Like we get caught in that. Got to solve the problem or I've got to find the exact way to relate. Uh, and so the example I can give you is like my body's in pain a hundred percent of the time.
00:22:46
Speaker
Uh, and there's not a whole lot that I can do about that. Uh, cause it's just the natural way that my disability has created things in my body, but people will try and relate their pain to, to my pain. And I'm like, yeah, that doesn't, it's nowhere close.
00:23:13
Speaker
I've had the thing that you're talking about stacked on top of this. Yeah. If I had just the thing you're talking about, I mean, I probably wouldn't even feel that thing. And so that honestly has been something even I want to have more conversations around the idea that
00:23:36
Speaker
as a person with a disability who experiences pain every day, I think we've been given a gift and it's also like a gift and a curse type thing where I can disassociate from the physical pain in my body to like it's the survival mechanism
00:24:04
Speaker
to help me through the day. But I also think that something like that impacts my ability sometimes to relate to the people around me and connect with myself fully because I'm so guarded against experiencing the pain. It's a really interesting thing that I'm diving into.
00:24:26
Speaker
you're you it is and i've got so many questions in the back of my head buzzing around that i kind of want to ask that actually we and we're going to go to this any second now i wanted to talk to you and i know you talk a lot about managing your own loneliness because it is a very lonely place to be when you have something going on that is different to everybody else's but just i just want to pause on
00:24:51
Speaker
that whole business of trying to relate your own problems to another person's problems doesn't work in any circumstance does it? Because all of us experience different things and our own experiences of even the same thing will be very different and yet
00:25:12
Speaker
People want to, I think you just said something like, they want to tick the box and know that you're okay so they can move on from it. It isn't born out of a negative place, it's because they want you to be okay. Yeah. Yeah, I think we don't do very well at just validating
00:25:40
Speaker
other people's experience. And that's something like kids and parents, if you listen to this, have your kids listen to this part right now. If they're a kid with a disability, here's a communication tool that nobody's going to tell you.
00:25:58
Speaker
always try and come from a place when explaining something saying, this is my experience. Right now I'm experiencing this because nobody can take your experience away from you. And like the more you can communicate from that place, I believe the better.
00:26:24
Speaker
yeah just believe what the person tells you about what the person is going through and dealing with right now i think that would be my message to everyone as you're saying if you're talking to anyone everyone everyone we just need to ask questions and believe the answers and the thing is
00:26:46
Speaker
If it's not true, if what they say is actually not true, that will bear itself out in their actions. You just get to pay attention. But we should all start from a place of belief and then let actions bear out
00:27:06
Speaker
this person is who they say they are. And also if it's not true, if it factually is not true, then maybe it is just coming from a place of how that person feels it is right now, which is equally as valid. Yeah.
00:27:23
Speaker
Which brings me round to going back to you talking about loneliness.
Eradicating Loneliness through Connection
00:27:27
Speaker
So you call yourself a loneliness coach, is that right? I recently switched to the connection coach and it's because people don't like to talk about loneliness and they're like, why do I need a loneliness coach? I don't need to be more lonely.
00:27:49
Speaker
I'm the connection coach and yes, I work with people who are lonely to eradicate loneliness and find meaningful connection in their life. Yes. I want to explore that because you just mentioned earlier that you have an exercise called bringing your loneliness to life. When we spoke originally of email, you shared with me very kindly an exercise on how to get out of your head.
00:28:19
Speaker
And that fascinated me too. Going right back to the beginning of this conversation, you talked about how people and teenagers especially can quite often just be too much in their own heads thinking that they're the only ones feeling the way that they feel. They have no right to feel how they do because they've got a normal life, no medical conditions, no disabilities.
00:28:43
Speaker
good grades, parents who are still together, all of the stuff, but still feeling lonely and I just want to explore what your thoughts are, what your tips would be for those people. Yeah, so first I would find one person
00:29:04
Speaker
You have to have one friend that you feel extremely safe with, and that you trust. And I call it a connection buddy. And here's what you do. You actually create an agreement with each other.
00:29:24
Speaker
and you say, based on your own experience and how this impacts you, because it's going to impact each person differently. But if Helen, you and I were connection buddies, I would say, Helen, if you haven't heard from me within a month, then I'm counting on you to call me.
00:29:50
Speaker
Do whatever you need to to get in touch with me, because here's what I know when you're experiencing loneliness. It starts out you're like oh yeah blah blah blah you get caught in that cycle of feeling like a burden and then what's the automatic thing that we do we isolate yeah.
00:30:11
Speaker
We isolate and here's the societal problem that I see is our answer to that problem is call me if you need me. Well, that person's not gonna call you because they're feeling like they're a burden.
Connection Buddy Suggestion
00:30:30
Speaker
So if you have a connection and have agreement that says, man, if you haven't heard from me in a month,
00:30:40
Speaker
call me or if you haven't heard from me in two weeks I need you to automatically call me do whatever to get in touch with me because that I know that amount of time means I'm starting to self isolate. Yeah oh my goodness that makes so much sense to me because that's what we all do isn't it when somebody we know and love and care about is experiencing something difficult even
00:31:10
Speaker
We'll just say, right, well, you know where I am if you need me. Let me know what you need. And every so often you maybe text them and go, how can I help? I'm guilty of it as well. And that's no good because people will say, oh, no, no, I'm fine. Honestly, I'm fine. Don't worry. And yet they need you even if it's just a walk and a chat and a conversation.
00:31:32
Speaker
Yeah. And I can tell you, so right before Christmas time, my mom and I, um, got COVID and we had spent, we had done everything where like, I haven't left my house and, uh, I'm sure it will end up being a year based on my condition. Right. And just safety for myself. We had people that, that reached out and they didn't.
00:32:01
Speaker
They actually, I don't think some of them even said, Hey, what can I do? They are like, Hey, I'm at the grocery store or I'm ordering groceries. Uh, what can we get you? And they just did it. And I think sometimes we forget, like you could get some food and bring it to a friend, not necessarily where we're at right now in the world.
00:32:22
Speaker
But you just do things and not necessarily ask what they need. You do something you think would support them. And if you've been friends for a long time, I'm sure you can figure out a way to support someone. Yeah. I'm talking a bit more about the pandemic. The pandemic I think has made people feel a lot more isolated. So for those
00:32:52
Speaker
kids or families and I know there are families I've seen a couple of people reach out recently and say I'm worried about my 17 year old he is in his room all day he is not engaging with his schoolwork because he's so fed up with his life he doesn't know where his life is going because that's such a key age right now to be in lockdown he's retreated into himself so apart from
00:33:22
Speaker
have a buddy and make sure they check in with you, what would you say? Well, okay, two questions. What would you say to the person who's struggling to break out of their own head, as you put it, and start that connection? And what would you say then to the parents who are worrying about the teenagers who are kind of going deeper and deeper into that lonely place? So let's start with the parents.
00:33:52
Speaker
or I've seen this work, but it was with younger children, but I believe that parents of teenagers can make this work for themselves too. And one of the most important things that you have to do is like for if that kid's in their room,
00:34:21
Speaker
is find one way, find one way to get them out of the room and to just have a conversation with you. And here's, here's what I want you to talk about. I want you as the parent to be vulnerable with your kid and say, yeah, you know what? I'm feeling this way too.
00:34:44
Speaker
I don't know the answers. I don't know what is going to happen, but showing that vulnerability to your kid. So what I did with the younger kids is we would do this for a week where parents would get with their kids in the morning and in the afternoon, and we would have them label how they were feeling.
00:35:16
Speaker
So how are you feeling today? Oh, I'm feeling, we had somebody said, I was feeling upset. I was feeling scared. Um, and they ran through all different types of emotions. Like the kids hit every single one almost during this period. But the major thing was when the parents started talking about how they were feeling too. And then.
00:35:46
Speaker
Uh, one person said, uh, they were talking to their son and their son stormed off in anger, but he came back and he had drawn this whole picture to say, this is how I'm feeling. And this is why I'm feeling that way. And the mom was like, then we were able to actually have a conversation.
00:36:16
Speaker
And I think because teenagers are older, like they're gonna think something like that is probably stupid. Like, why do I need to label what I'm feeling? But if you take the lead and you actually talk about it and you say, hey, here are some things that I noticed and I want you to know I care about you and what's going on.
00:36:46
Speaker
And here's what I'm noticing for myself. If you take the lead, they're going to be more willing to open up, I think, because the circumstance says, hey, here is one of the few humans that I have an actual physical connection with right now. And the other thing I would tell you, as much as your kid might not like it, give them a hug.
00:37:13
Speaker
Yeah, that is so powerful, I think, especially with teenagers. Because I know if I said to my kids, I'm thinking of my son, I could just see him doing it now. If I said to him, just label how you're feeling. Just tell me a word for how you're feeling. He'd just go, meh. And that would be the word. And I'd be like, no, you actually have to give it a real, yeah, but I just feel meh. So you're right that if I then turn around and say, well, actually, I'm feeling,
00:37:42
Speaker
really lonely at the moment, isolated, whatever it might be, which it is actually, I do feel isolated because I'm not seeing my friends. Our conversations are more forced because we're having to do it online, we can't hug. All of these things, kids and especially teenagers, well kids are used to thinking that their parents are right all of the time. Teenagers are used to thinking that their parents think they're right all of the time.
00:38:12
Speaker
and despising that so actually to see a parent being vulnerable as you said I think probably will work I think it might not work in that moment and you may need to let that that teenager go away but they might come back in a few days and go
00:38:32
Speaker
yeah I'm feeling a bit like that too or actually you know I'm feeling more like this and you might get that conversation and as you said forcing that conversation sometimes has to happen so it might be a planting the seed
00:38:44
Speaker
then it might be all right you are coming on a walk with me and I'm not taking no for an answer which I do have to do with my kids sometimes and sometimes they won't talk to me on that walk they'll just be grumpy all the way around because I force them out and sometimes we'll have a great conversation and it's helpful and useful and it's just taking it one day at a time I think I think that's really really important advice
00:39:09
Speaker
I'm gonna I'm gonna make you go back to the other question now for the let's say we're the adults in us let's say I'm locked down and don't want to connect with anybody but I'm feeling terrible about that what do I do? I think the first thing is actually asking yourself the question of
00:39:32
Speaker
what do I feel is really stopping me from communicating with somebody? What's really stopping me from connecting with somebody? Because what you said earlier is true. There are times when you just don't, you're not gonna feel like it and that's what you actually need. But in those moments when you're like, I know I want this,
00:39:58
Speaker
but I'm still self-isolating or I'm not talking to anybody. It's asking the question of what's my current fear around actually reaching out to somebody. And let's be real, I think most of the time, regardless of who it is, there's some aspect around rejection
00:40:26
Speaker
that comes up that will stop us from making that phone call or having that conversation. And again, the validation piece, right? Maybe if I reach out to them, my feelings and my experience won't be validated. So why do I need to do that?
00:40:47
Speaker
Yes! Rejection. Oh my goodness. I hadn't thought about it like that but that is absolutely, when I'm stuck in those moments, that's absolutely the reason that I don't want to tell anyone else because I don't think they'll understand or I think they won't hear me and they won't, maybe they'll think I'm a bit stupid or a bit lame or a bit, oh gosh. Yeah, we won't include Helen next time because she's no fun. And you don't want to be that, do you?
00:41:16
Speaker
Here's what I would ask you, personally, just about what you just said. It'd be like, who helped you create those stories around being stupid, being lame, and then that feeling of exclusion? Who told you those things when you were that zero to seven? Oh, now I get it. And that's where we go back to the beginning. Gosh.
00:41:43
Speaker
Right, so is that something that you work on with clients is unlocking that as the zero to seven those childhood years that we, let's face it, we've all forgotten what happened during those years. We didn't forget is there is just, we have all this other stuff stacked on top of it again. That's why I chose the idea of labels, right? Because you just talked about three labels
00:42:13
Speaker
right here in this part of that conversation. So you have lame, stacked up on stupid, stacked up on. Yeah. And so there are so many layers to that. And like stupid is a good example because that's such a, like people can throw that around so easily, but yeah.
00:42:41
Speaker
it can imprint so, so easily. And then once you believe that you're a certain thing, you just start playing out what that means. And that's the hardest part about living life with a disability because the societal definition is honestly being less than human most of the time.
00:43:09
Speaker
and it's being broken, it's needing to be healed from the medical model. These are internalized stories that I deal with myself because I'm a member of the community and that your kids are dealing with whether you know it or not. This is going to be some tough love for parents right here. As much as you want,
00:43:39
Speaker
the best for your kid and all this stuff, you're not gonna know. You don't know what it's like to experience the world. And as much as you try and protect your kids from things happening, it's gonna happen. And the world is gonna, at a certain point, you realize the reality of how the world views you
Questioning Societal Labels
00:44:09
Speaker
And it takes a lot of skills and a lot of questioning, and a lot of seeing other people in the world that are like you to work towards getting over and peeling back what that label.
00:44:27
Speaker
actually means and that's any label like one of the worst things that happens a lot the idea of you're smart for a disabled person or you're pretty for a disabled person or you write well for a disabled person and it's that attachment is always there. That's such a passive aggressive thing as well though isn't it?
00:44:55
Speaker
Oh, maybe I just see it that way. Maybe again, it's people trying to be thinking they're being nice, but it's not a compliment, is it? I would tell anybody if that resonates with you, one of the things is find a place like therapy to go to.
00:45:15
Speaker
Like that gets such a bad rap, but I think if you recognize that you are dealing with a lot of labels and you're having a rough time, find a mental health professional therapist and
00:45:32
Speaker
set aside time to go and talk with them. And if you're a parent that your family can afford that, I normalize that. Don't make it a stigma because that within itself is a stigma and a label that people deal with. But talking is so powerful and talking with somebody who already has the tool that you need
00:45:59
Speaker
it'll save you so much in your life. And it's not just about saving money. It will make you live a happier life because you will know who you are called to be. You will know who underneath because underneath all these labels, like we all have a beating heart. And that's like, that's the truth of who you are is what's the character of your heart.
00:46:29
Speaker
Oh, I could not agree more and therapists are trained to do that professionally and uncover all those layers and get to the truth of who you really are because that is the only way you're going to live happily rather than trying to be something that you're not or something that you've told yourself you are or that someone else when you were six told you that you were. Nathan, the other thing that you do apart from working with people on their lonely feelings
00:46:59
Speaker
and connection is try to change the label of disability as you've put it. Just tell me your work there, what you do.
00:47:11
Speaker
I would say the most important work I do in that aspect is talk about it on platforms like this. Talk about my experience and experiences that I've seen from other people with disabilities so that my friends and people without disabilities
00:47:37
Speaker
like get a true picture of what it actually is. Because one of the things you'll hear all the time is, well, where are all the people with disabilities?
Visibility and Societal Design Challenges
00:47:47
Speaker
I don't really see them. And often it can feel like you're the only disabled person in a room a lot of the time. And it's like, well, you don't see them because the world's not
00:48:03
Speaker
designed for them to navigate within it. And we've been taught so well to hide. It's why people don't talk about mental illness. It's why if there is an invisible disability, a lot of times people will suffer in silence because they're like, I need to be seen as normal.
00:48:31
Speaker
Yes. Oh, it's heartbreaking, but I know it. I've seen that in so many people. And so a lot of my work there is, again, it's talking to people one on one, understanding their story and what they're navigating. It's listening. And then it's also that tough love of, well,
00:49:00
Speaker
What are you not doing based out of the fear of the judgment that you'll get when you're out in public or things like that? Because we get stared at. If it's something that's visible, we get stared at every day. And it's much like probably that introverted time. It's like, do I really want to be stared at today?
00:49:30
Speaker
And one of the things that I tell people with disabilities is we have so much around expectations, like as humans we have so much around expectations and
00:49:48
Speaker
I think having no expectations or very low expectations is actually a beautiful thing. And here's why. If someone has low expectations of me, then I have a freedom to go try stuff that I want to try. And I already know that they think I'm going to fail. So it doesn't matter what happens.
00:50:13
Speaker
it gives me the freedom to say, hey, I'm just going to try. So that's one thing I would challenge anybody is to look at their expectations and ask yourself, what is it that I really want to do? What are things that I want to do? What do I want to try if
00:50:35
Speaker
if success or the idea of success wasn't attached to this thing and it wasn't attached to how I feel about myself, what would I want to go do? Yeah. I also have an idea, I don't know if you guys
00:50:52
Speaker
use this. I used to hate when people would say you're so inspirational and because it would be daily activities that they would say that but I've changed my stance on even what that looks like and I don't have any control over that. I don't have any control over
00:51:15
Speaker
whether you think I'm an inspiration or not from your perspective. The only thing that I can control is how I show up in the world. So I think as a community, we will waste a lot of time worrying about that idea. And I know a lot of people with disabilities
Being Seen as Inspirational
00:51:40
Speaker
I'm in a minority that believe this for sure, but I think it's such a waste of time to worry about the idea of being an inspiration, regardless of what it's for. If I'm an inspiration for washing my dishes to you, then hey, guess what? The onus isn't on me, it's on you to figure out why you find that inspiring. Yes, yes, I was gonna say exactly that, yes.
00:52:09
Speaker
Um, so I think that that's also some work that I'm, I'm stepping into with the community of, okay, let's challenge this label of what this means for us, but it's really nitty gritty. Like, let's talk about what this, this life looks like for you. And let's be real. We know that the world isn't designed for us to live in, but
00:52:39
Speaker
The only way we change that is through having these difficult conversations and we can't have them with each other. That's the biggest problem is it's very echo chambery where it's just people talking about problems we know exist, but we're not talking about it to the people who don't see it as a problem.
00:53:05
Speaker
Yes and therefore you're not affecting change it's better to be actually out there in the world I guess you might say doing the things in difficult ways because the world is not set up for you to do them in anything other than a very difficult way so that people can see that that is a problem. Yeah.
00:53:27
Speaker
We'll see. It takes way more than just having the conversation, but that's something that I believe very, very strongly in. I believe that if we're not in communities that don't look like us, then we can't expect the change that we want to see.
00:53:52
Speaker
And we can't expect people to recognize that part of themselves, again, going back to the thing that I said earlier, if we're not there, they're not going to be able to see us. And what we can't do is we can't just stay in the blame mode of, well, the laws aren't set up for us. You actually have to get out there and have some difficult conversations. Yeah. Yeah. I mean,
00:54:22
Speaker
Those are my favorite type of conversations to have. And I think for me, that's one of my gifts is the ability to listen to those. And that was a skill gained over lots and lots of years because I used to get really reactive when certain things would come up. But at the end of the day,
00:54:52
Speaker
um they didn't that didn't serve me no it doesn't i'm not surprised though nathan i'm really not surprised because you have such a lot to put up with and a lot to deal with and a lot on your plate on top of what everybody else has got going on in their lives that they grumble and moan about that we all grumble and moan about you have a whole other full-time job just looking after yourself medically and and your and your health and
00:55:17
Speaker
just I imagine just getting around. Yeah and there's so many people and that too is a gift in this circumstance that we're all in of the pandemic because it also brought to light that there are so many people that were in this circumstance way before this virus came around and
00:55:45
Speaker
I have friends that because of chemical sensitivity, they have to be very, very sure that the space they're going to is chemical free. Or else they have an opportunity to die. Like their body will start to like have reactions. And there, there's so many people that have these,
00:56:14
Speaker
circumstances where this has been a 10 plus year process of being alone and the beautiful thing about this now is more people have a shared experience where they can actually be like
00:56:33
Speaker
Holy crap, I don't know what in the world you've had to do this for 10 years. How have you done it? So people with disabilities, if you're struggling with this circumstance right now, if you know somebody with a disability, ask them for support.
00:56:54
Speaker
Yeah. God, you've just made me realise that we all know so little about each other, right? That hadn't even crossed my mind that that would be a problem for somebody. And why would it? Because I've not come into contact with people, but I want to know these things. I was talking to someone today who's not been on a plane since their child, well, must have been since their child was born, but he has an airborne peanut allergy that's very severe. He could die.
00:57:22
Speaker
if someone opens a packet of nuts on an airplane. So that's their life. They don't have holidays abroad. And things like that have never, never been on my agenda. And just, you're right, the whole business of talking to each other, understanding who it is that is isolating at the moment that you didn't know had a chronic illness or a life-threatening condition, it is unifying.
00:57:51
Speaker
Yeah because my friends will say like you're 35 what do you worry about the virus for or now it's like you've got it so come on out and I'm like no that's not how this it doesn't work like this like I have other things that I have to weigh out and that was interesting in the fact that
00:58:16
Speaker
when it all started, I got a glimpse of what it must have been like for me to be a baby that couldn't take care of myself and my mom's motherly instinct because we lived together and she was like, okay, nobody's coming in here. And it was taking every precaution
00:58:43
Speaker
necessary. So this was what it was like when I was younger. Yeah, you never stopped being a mum. Doesn't matter how old your kids get. Nathan, thank you so much for talking to me. There's so many more questions I want to ask you, but we have run out of time. We just have to stay in touch. I'd like to understand more about what your life is like and how you're trying to change those labels and those perceptions.
00:59:12
Speaker
because I do think it's so important. Where can people find you if they've resonated with any of this either on a disability point or on a loneliness feeling? Where can people chat to you? Yeah, so that can be the easiest way is our Instagram. And so that's the real Nathan Todd.
00:59:40
Speaker
And also now my number one platform is over on Clubhouse. So if you've got an iPhone and you got Clubhouse, you can find me over there.
Connecting on Instagram and Clubhouse
00:59:53
Speaker
And that one is real Nathan Todd. Those are my two main places right now. Okay. And your podcast and your website?
01:00:04
Speaker
Uh, so the podcast is no label live. So, um, you can find that on YouTube. It's a YouTube show and, uh, the website, if you just go there, it will take you to find me directly. Perfect. Amazing. Thank you. I'm going to come and find you on Clubhouse right now. And then I can say I know someone there and I won't be scared of talking.
01:00:32
Speaker
All right yeah I love it. Nathan thank you so much for chatting to us today. Yeah thanks so much for having me. Honestly I never fail to be astonished by the bravery and determination of all of my guests actually. If you've loved this episode please do go have a browse of my others you'll find
01:00:54
Speaker
loads of brilliant people talking about how they've overcome challenges that they went through in their teenage years with tips and advice and inspiration and a light at the end of the tunnel most importantly for families who really might be feeling that they're in a very difficult place right now.
01:01:14
Speaker
If you like the podcast I would absolutely love it if you go and subscribe and give it a rating on iTunes because that really really helps other families to find my remarkable guests and these lovely conversations. Bye for now and I'll be back next week with another brilliant guest to talk about the highs and lows of parenting teenagers.