Episode 10: Bridging the gap
~music - “Wake me up, loud as clouds..all my love for you. You’re a dreamer, I am too. it’s f**king normal we could rule the world”...
Lauren Fenton 00:16
This is the Fucking Normal podcast- the cheers,chairs, tears and Friday night beers of parenting disabled children. I'm Rina, and I'm Lauren.
Rina Teslica 00:24
And we're both mothers to daughters with special needs. Parenting a disabled child can often feel difficult to navigate. If this is you, you're not alone. We're here to share unique parenting stories, and chat about the things that we've learned and are still learning.
Lauren Fenton 00:40
Prepare to sometimes laugh, sometimes cry but hopefully leave with a shot of optimism in your arm. And don't forget we are talking from a parent's perspective- we would never presume to talk on behalf of a disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.
Rina Teslica 00:59
Because really, what the fuck is normal anyway?
Hi, and welcome to another episode of the fucking normal podcast. I'm your host Rina.
Lauren Fenton 01:19
And I'm Lauren.
Rina Teslica 01:22
And today, we have a super interesting conversation with three- Yes, three guests tackling the topic of Bridging the gap- the concept of where we are with neurodiversity, and where we would all like it to be. As most of you listeners know, Lauren and I were catapulted into the neurodiversity universe, when our daughters were born. We both came in with very little understanding, and honestly, very little experience of this world. We both came in with a whole load of neurotypical expectations embedded in our psyche. But throughout the last six or seven years, we've both come a long way in our understanding and deep appreciation of neurodiversity in all of its wonderful richness. But of course, it goes without saying, we are still learning each and every day. Learning how our children see the world, learning how we can best support them in a world that let's be real, isn't really made for them. And of course, learning what we could do to make it more diverse and embracing for everyone.
Before we get into this riveting conversation, it's worth defining some terms we're going to be using throughout so neurodiversity is a variation in the human experience of the world. People experience and interact with the world around them in many different ways. And there is no wrong or right way of thinking, learning or behaving. Autism or ASC is a super broad range of conditions characterised by social and communication differences, repetitive behaviours, reliance on rules and routines and increased sensitivity to central sensory stimuli. Obsessive compulsive disorder or OCD is a condition characterised by recurring thoughts or repetitive behaviours that you cannot control.
Lauren Fenton 02:55
As Rina mentioned we have three guests joining us to talk about this topic. Firstly, sisters- Sophie and Emma Jackson.
Sophie is an actor and writer, whose debut show, Just be Normal, explores the topics of autism and neurodiversity. She stars in the play alongside her sister Emma, and it is inspired by their own lives and personal stories. Written off as a problem child- the play explores how Emma, the older of the two sisters, seeks to understand her autism better as she comes to terms with the fact that even those closest to her are poorly equipped to help her on her journey. Meanwhile, Sophie secretly struggles with her own unidentified neuro-divergence, which is reflective of Sophie's quite recent real life discovery that she has been living with OCD.
And we'll also be talking to Creative Director, Connor Pierce. Connor's production company. Akimbo, is behind the play, and- as it's director, he brings his own lived experience with OCD and neurodiversity. He is passionate about making more inclusive and accessible creative spaces; about making inclusion and diversity at the centre of such productions rather than tick box after thought. Welcome to the podcast, Emma, Sophie and Connor.
It's great to have all three of you here.
I'd really like to start with Emma and Sophie's personal story and the inspiration for Just be Normal, the play that we'll talk about in a little bit. So can you tell us a bit more about who you both are? Your childhood and your discovery around your own neuro-divergence?
Emma Jackson 04:41
So I'm Emma, I'm the Autistic one.
Lauren Fenton 04.49
How did you come to realise that you are autistic?
Emma Jackson 04:57
I was diagnosed when I was almost 18. But I think one of the reasons why the diagnosis was missed was maybe because we were moving around a lot. That's why people assumed, maybe, I was struggling with friends and socially. So, I think that part of our lives almost masked certain aspects of what should have been picked up as me being autistic. Sophie and I have always been really close. We've kind of always been at the same school.
Rina Teslica 05:27
How many years difference are there?
Emma Jackson 05:29
So I think there's.. is there 20 months between us?
Rina Teslica 05:31
Oh, wow.
Emma Jackson 05:32
So yeah, so we are really close. So practically two school years but yeah, less than that. I just crawled through life ,basically, up until I got to secondary school. There was probably quite a few things in primary, like, for example, I wasn't making friends; I was very interested in reading;I was probably quite ahead of the age group when it came to reading and being obsessed with books; I had lots of different obsessions when I was younger, but again- that can be quite a neurotypical or normal thing to have, when you're when you're young, you know, you've got that thing that you fixate on, that's really fun for them, and you get bored, and it's on to the next thing. So I think it's it is difficult to pick up on the things that were going on, especially in women and in girls, because it isn't, it doesn't, portray itself the same way as a man.
So, when I got to secondary school, I think that's when my problems started to ramp up- I started to find school very difficult. I was very badly bullied. I had, basically, no friends and through that, unfortunately, fell into the company of some quite dangerous people who were living in the area of London I was living in, which resulted in a lot of issues. Even now, I have even now a lot of trauma but I think it's important to mention that, because it's directly related to my autism- I basically fell into a gang. And through that, I got in trouble with the police regularly. My parents were very worried about what my life is going to look like, going forward, and that's how I was then referred to a specialist via the police. So that's how the start of my diagnosis happened. ..but even from that point it took a while to diagnose, from when I was originally referred to specialists at about 14. So from then until 18, that's how long it took to actually just get a diagnosis.
Rina Teslica 07:46
So it was your mental health struggles that initiated a diagnosis for Autism?
Emma Jackson 07:52
I want to be careful about that kind of language because you don't, well, in this country anyway- you don't go to therapy to get a 'Cure' from Autism. Obviously at the time, I didn't know that I had Autism, so when I got referred to this person, because, I was very, very depressed, with very low moods. I struggled badly, and without going into too much detail, people were very concerned about my life. You know, I think I was actually also quite concerned that potentially something would happen or whatever. So yeah, I was referred initially as someone who had quite severe mental health issues, and I was very, very heavily medicated for all of them but I think that actually quite a lot of what initially appeared as a mental health issue wasn't at all and was actually just projections of Autism...
Lauren Fenton 08:54
That really speaks to, I guess, everyone's lack of understanding, about behaviours, or things that you you were perhaps displaying that didn't fit into their neat bracket of what they knew.
Emma Jackson 09:09
Yeah, definitely.
Lauren Fenton 09:10
So when did the actual Autism- through that you got the autism diagnosis? Right. So when that happened, what was your reaction to that? And what did Autism mean to you prior to the diagnosis, and at that point?
Emma Jackson 09:30
It's pretty embarrassing, really, because previously when I thought of Autism meant... There was a boy who is, I think, a similar age to us. Growing up, he was autistic and he went to a specialised school that could help him. He was nonverbal, and I think that is what I assumed Autism looks like. I never bothered to research it because I was never faced with it. I guess when I think when someone mentions Autism as a disability, I kind of thought I'm not disabled- I'm not a disabled person, which just comes from ignorance. I guess if it doesn't bother you, why would I? Why would I research it? Why would I have looked into it? Which is, which is kind of where the issues with all disabilities sort of start... I think the therapist said, I'd like you to be assessed for Autism. So I went home with that, while she did the assessment stuff. So I kind of thought, like, no, surely no, like, whatever... I researched it a bit but I was kind of skimming. I wasn't. I kind of thought,' Oh, God, another thing that they they're going to slap on me, like what medication will they give me this time?' I actually also was in the process of being admitted to a psychiatric unit. And through that, they also wanted me to be assessed for it. And I think that was actually just a tick box, so that they could cover their backs.
Emma Jackson 11:02
I think if it came out later that I was Autistic, and they had medicated me for all of this stuff, then I could turn around and be like, ‘Well, hold on a minute…’ So that was my assumption.
I remember sitting in the car with Sophie and my dad. I don't know if you remember this? I remember also discussing with both Sophie and my dad and they said: ‘No, don't worry, it's not something that you'll have. They're just doing it to make sure.' Then of course, I went through the assessment, which is a whole other thing in itself. It's very odd like thing to do but... especially, when you're almost 18, you're technically an adult, but the assessment is for a child, essentially. So it's a bit odd. Yeah, I remember walking away and thinking, I could just tell by the guy who did the assessment that he knew, I was... I was ticking all these boxes. It was like I was there being like, God, okay, fine. And then when when the report came, and I guess I was quite, it was like a slap on the face, a little bit. And it was like, God, initially I went into like a deep (like a true Autistic) deep dive into everything Autism. I looked into savantism, I looked into everything., I think, in a way, I was trying to relate desperately to people. And even then, so I didn't feel so alone, because I did feel really alone and a bit embarrassed. And then I think I just went through a grieving process, actually. And then fast forward, I kind of learned to accept it. And, you know, lots of different things that I felt that were really positive. So it was a process. It took a while, basically.
Lauren Fenton 12:41
It sounds very similar to, I guess, most parents' processes that they would go through. So, you know, often children are diagnosed very young and it's the parents that then perhaps go through that exploration, that confusion, denial, grief, acceptance kind of cycle. We've had a lot of parents talk about that, so it's kind of interesting, the parallels, but obviously, it was happening, it's you, it's your life, and it's your identity, and it's who you are. But you're really just sort of really discovering a version of yourself at that age, or that there's something specifically neurodivergent in your identity at almost adulthood. Yes, it's really interesting. How was that period for you, Sophie?
SophieJackson 13:32
Um, let me start by saying that me and Emma have always been able, somehow to maintain our relationship. We've been through, like a lot together, and we've gone through our phases of not talking but overall, we've always been like best friends. So luckily, it's not had a detrimental effect on our relationship.
But it was really really difficult growing up with Emma as a sister because I fell into this place of like, expectation that I was always fine. I was always okay, I would always get on with it. I would always get up and go to school. And then I've always had issues with anxiety, but it's not something that I would really, I don't ever really remember having a conversation with my parents about it being like, 'Oh, I think there's something weird going on with me'- I think I just wanted to be or I wanted to fall into that expectation of being an easy child. That's quite a normal dynamic. Yeah, so I just got on with it went to school, blah, blah, blah. Until I randomly got an autoimmune disease when I was 16 that I've always had, but that it just like developed when I was 16. So yeah, I got an autoimmune disease. And then that kind of spiralled my OCD, in like a health related OCD way. Because I thought I thought I had AIDS. I know there was no way I had AIDS but I convinced myself that I had AIDS. And it was it was awful and terrible. I felt like such an idiot, because no one, I couldn't tell anyone that, like, I'm convincing myself that I have all this because I was like, people are gonna think I'm just seeking attention, people are gonna think that I'm just doing this and that. And it got to the point where I really couldn't rationalise anything like, at all. And it physically affected me. I got this thing called vaginismus which because I was so scared of getting sexual health related stuff, my vagina closed, and I couldn't get a tampon in, couldn't get anything in and nothing like- it was awful. So it manifested really physically and it's in my body, and then, I got a diagnosis but it was something that I was very, I was really embarrassed and I was really secretive about it. I didn't really- it's something that I've only started talking about in the past three or four years. Now looking back, I sort of finally then went to the GP and my parents said yeah, we should have maybe sort of picked up on some signs from when you were really small.
Rina Teslica 15:54
So you were doing it purposefully to make yourself be the more normal child?
Sophie Jackson 16:01
Yeah, I wanted to be normal. I wanted to be the normal one. I really did because I saw the strain that Emma was going through, what it was causing. Also, to be honest, no one was really looking at what I was doing anyway. They didn't have to worry about me. So I didn't, it wasn't a conversation. There wasn't really ever really a conversation about my mental health until afterwards, which is okay, it's fine. It's not... It's yeah, it was difficult, but it's okay now.
Rina Teslica 16:28
So did it ease when Emma got her diagnosis? And they were like, right, we know what's happening. How are you? Kind of thing.
Sophie Jackson 16:37
It's so…it's difficult because when Emma was diagnosed, Emma was 18. And I was 16. And Emma had moved out the house.
Emma Jackson 16:46
I'm sorry, I moved out at 16.
Sophie Jackson 16:49
Emma moved out of 16. So then, I don't know what happened. I just didn't really speak to my parents about it until I had to, until I was 18 because it only manifested physically when I was about 17/18. And then I started going to the doctors and I then started talking to my dad about it because it wasn't, it became something that I actually couldn't hide because I'd be at my dad's house and I'd be like going into an OCD spiral and people would notice
Lauren Fenton 17:16
When you say an OCD spiral, can you describe that for us?
Sophie Jackson 17.23
Yeah, so for me, it's not like, I don't have any compulsion to like, wash my hands or tap things or, or do any, like repetitive patterns like that. For me, it's like, I'll get a thought in my head. And it will be like, so for example, when I got my autoimmune disease, it was like, yeah, you've got AIDS, and a person that doesn't have OCD would be no like- I can rationalise this and the reasons why you don't- bla bla bla bla bla. And although I can hear the rational voice, the irrational thoughts completely take over to the point where there's, there's no right like- I just cannot rationalise anything. Even small things, like I couldn't have baths for a long period of time when I was a kid because I was having intrusive thoughts about a shark coming up the plug hole, but it's more than normal fears. It's the inability to rationalise silly things, basically, everyone gets intrusive thoughts. I think everyone gets thoughts that just come into their head, and they can't get over it. But for me, it's like. I cannot once I get those thoughts. That's it, and it spirals down. And then then more thoughts come in and sort of like that.
Lauren Fenton 18:29
How are things now? I mean, are you getting support with those struggles? And I guess equally? Where are you both now? Because you've described a lot of the challenges growing up not knowing and then post diagnosis. Has life got easier for both of you and how?
Sophie Jackson 18:48
For me, unfortunately, I've not really as an adult received proper help, mostly because there's a three year waiting list for CBT therapy on the NHS. But luckily, just a few weeks ago, my dad managed to put me on his work health care. So I'm finally at the stage where I've got my referral, and I'm going to get the proper help that I've sort of needed since I was a child.
Lauren Fenton 19:12
Thank goodness, gosh. So that's positive. And Emma, where are you at now with your Autistic Self?
Emma Jackson 19:20
Because I'm someone who has sadly got a lot of trauma that happened as a result of just not having a proper diagnosis early enough, I feel anyway, I think that that trauma still very much affects me today. And dealing with that as an autistic person is very, very difficult because, actually quite similarly to what Sophie's just described, it is a spiral of anxiety and thoughts that I can't control but I mean- I don't receive any professional help anymore, mostly because I don't trust any, I really don't trust people to know how to help me. So it would take a lot for me to go and get help for things that I find difficult with my own autism, for example, but, you know, I think I am lucky in the sense that I've got a partner that's really understanding of everything that I go through daily, and I've got a family that, you know, supports me in the best way that they can. So, yeah, I mean, I'd love to be able to be like, Yeah, you know, I have loads of health, and I feel great all the time. But that wouldn't be honest. Like, it's the honest truth is that I struggle every single day with lots of different things. And I, you know, that's just that is just reality for me.
Lauren Fenton 20:48
Are those struggles largely because of lack of understanding?
Emma Jackson 20:53
Yeah, it's kind of like, I hate to bring up but it is like the whole thing where people Oh, well, this country isn't racist at all. It feels like that. People are so quick to be like, Oh, but I'm not judgmental. I'm really understanding like my brother's sister's, boyfriend's partner's cousin has Autism, so I know all about it. And it's like, you could not even begin to imagine the stuff that happens for me, and I wouldn't pretend to understand what goes on for you. And I guess like, my fear is that people think that they do get it and I'll do something that's very typically autistic- And people are like…’urrr’ Do you know what I mean? And they then back off really quickly. So for me, it's like, I'm constantly masking I'm constantly trying to be like, you know, if I'm in a shop, and someone speaks to me. When you have a baby, I'm sure that everyone, well, you guys can relate. People come up to you now. 'Oh, what a gorgeous baby'. And they want to touch the baby. And they want to like, do like crazy mad gestures. And I'm there like, trying to work out what they're doing. Are they talking to me? Like are they talking to the baby, like, Can I hold eye contact with them? Or like, shut it down? It's really hard to explain but that's the kind of thing that I feel makes me really anxious and people just don't understand or don't get because because our society is so ableist. And I think it's interesting that we always assume that everyone, unless it's a physical disability, that you can see, that everyone's normal everyone's neurotypical.
Lauren Fenton 22.20
It’s the assumptions.
Emma Jackson 22.22
Yeah. And that's what I think is really quite a damaging thing. So yeah.
Lauren Fenton 22:26
Yeah. And that is the gap basically, isn't it? There's a gap in understanding, empathy, kind of knowing how the world looks from other people's perspectives? I don't know. Did you happen to see the 'Inside our Autistic Minds' programme? It's basically Chris Packham, who is Autistic himself. And I think that was really what was great about it as well was that he was presenting a show not as an outsider, going, let's go and understand that totally different experience to my own, but as somebody who empathised and understood,
Sophie Jackson 23:01
Because it's crazy how easily people will understand if they actually listen and it's explained to them properly. Yeah.
Lauren Fenton 23:07
Yeah, I think that's it- Bridging the Gap. It's not just about redesigning everything. It's about listening. Like, you can only understand if you listen, and I feel like, yeah, we need to listen to everybody more.
Rina Teslica 23:21
And being exposed to as much diversity as possible. I think it's so easy to talk about it, which we're doing, but to actually see it is so different. And I think we need as much exposure as possible.
Lauren Fenton 23:36
I think it's bad for everybody. Everybody is richer for a more diverse and interesting world.
What advice would you give to me as a mum who has one daughter who kind of commands a lot of attention because of behaviour, and also because she has lots of medical and speech therapy, physiotherapy type appointments, and then my other daughter who just kind of gets on with it? It's hard sometimes when one child is very...
Emma Jackson 24:08
Oh my gosh, it must be so hard like I don’t blame my mum and dad at all, like it's not their fault. And also because of my OCD, I was like, purposely not speaking about it, like, because I didn't want them to... I was anxious about what would happen if I did. It was a whole thing. But I think the difference between you guys and where my parents were at when they were dealing with everything, is that they didn't know, like the word 'Neurodiversity'- it wasn't really a word that we, that I knew. I probably only knew that word when I was about 16/17. And I think you just have to like- just making time for everyone and making everyone's experiences valid. And, what everyone's feeling valid and it is really hard growing up with a sibling that, maybe, commands more attention or needs more help or whatever. And it's really difficult, but just because someone needs more help than me, I think it's just the reassurance that they are still a valid human, even if they are not struggling with things.
Lauren Fenton 24:11
Yeah, valuing everybody equally. It's key to all of this, the world needs to do more of that as well.
Connor Pearce 25:35
You have to have confidence in the fact that just by asking questions, like what do I do as a mum who has one child that's like this and one child like that, you're probably already doing so much more than you give yourself credit for and you realise, because it's not, I don't think it's a natural state, when you've got one child that has very overt needs to consider the, you know, the other child, when you're presented with something that is so obvious. And so taking up space and time, you're, of course going to be like, you know, hyper focus on getting solutions there. But just by having these conversations, and by being in the groups that you guys are in and acknowledging it is like, is huge, just the just the acknowledgement that there could be this dynamic where this other child needs... I think my a lot of my OCD manifested in the exact same way that Sophie's did. And the reason it didn't get diagnosed for so long was in a really similar way. Family dynamics sort of meant that I very easily kept what was going on with me very covert. And what happened with my family, because my parents weren't aware of the potential for me to have any underlying issues either, was that I ended up burdening. Sorry, shouldering a lot of the burden of other things that were going on. I think if I had just one little bit of advice to parents that might be going through something similar, is just trying to identify the difference between the sibling becoming part of the support network, versus becoming like a third parent in the situation. You know, I think that's the big difference.
Lauren Fenton 27:30
That's a really big challenge as well, because I am more like aware of that. But it still happens at times, you know, it's like she does, my oldest daughter, does perform kind of some… Well, Iike a carer role some of the time. And it's hard to draw a line of what an older sister sibling would be asked to do, ordinarily, because older siblings do get asked to tie their younger siblings shoelaces, or whatever it might be, versus what's kind of out of the ordinary and then becomes like you say, shouldering a kind of burden of- I am responsible for caring for this child and supporting this child with their needs.
Connor Pearce 28:12
It's so challenging because the the sibling that feels that they are responsible, like you said, will just naturally fall into that. So it's like an unlearning thing. It's not like, there's very little things that anyone can do to stop them feeling that way because I think most siblings will naturally feel that way. But then I think it's probably just awareness from the parents to identify when it's happening and try and like, let them know that it's not their responsibility, you know. But yeah, as I said, I think you're probably doing so much more than you even realise. So don't feel too...
Lauren Fenton 28:46
Thank you but I think, you know, it's on everybody to talk about these things with their children, regardless of whether they they have a child that's neurodiverse or not, I think it's on us as parents to teach our children to be understanding and empathetic and when they see difference, not assume it means deficit, but be curious and that's okay. And that's great. So, that leads us nicely into what you guys are doing now, the three of you in putting on this play, ‘Just be Normal’ that you wrote, Sophie and before we talk a little more about that I think we're going to be treated to a little extract, a monologue from from the play- is that right? So okay.
Sophie Jackson 29:38
Autism.
A developmental disorder or variable severity that is characterised by difficulty and social interaction and communication by restrictive or repetitive thoughts and patterns of behaviour. Life categorised into boxes of different levels of misbehaviour. She felt like a complete failure since the age of 13, since she was barely a teenager when toddler-like tantrums turned to tactless people turning their backs on the talentless teen, instead of treating her kindly, treating her as something to be tolerated.
Was I different?
No, I was aggravated and so frustrated as I slowly donated my life to a world that rotated around her. I mean for fucksake, she was older than me. Why can't she follow things how they're supposed to be? Go to school, be carefree. I don't know, after maybe get a degree? My parents would agree. And now we all look back and feel, well shit. And guilty.
She brought her knees up to her chest and couldn't even try and do her best because it was never enough. And she was done. Looking back to around 2001, when her blank canvas wasn't branded by a doctor's diagnosis, because it didn't exist. Autism in girls didn't exist. I mean, 2001 we had the technology to have our first iPods, to clone Storm Troopers, no kill brick supercomputers, just a generation of men in white coats deeming girls as difficult.
Was it a gift that she wasn't restricted to disability? Let's wait and see.
Relationships wrecked? I'm sorry, rambling rackets of rigmarole but what is the moral of this story? What if you have to be yourself, but you don't know what that is yet? Because the laboratory only just put you in this category. And everything is too loud, too hard, too much, but also mandatory, like school, since age five, some were kind, but most were so fucking blind to the signs that she screamed. Now she's 17. And she's looking back on her life and everyone has just been so mean, to put it simply.
She self isolates, no chance for a clean slate. And she's stuck. She started to become angry. Like, I'm sorry, What the actual fuck? ‘Sorry, Emma, it's inappropriate for you to speak to teachers like that.’ She doesn't care, 'I think you're a twat'. 'Well as a matter of fact, with a mouth like that, it would be a miracle if you made it further than becoming a teen mother'. After that, she began to stop, not bother, she didn't feel stronger, life began to look longer and longer. The monsters, however, she held did become stronger. And right now she was conquered, by loneliness. Just take a deep breath.
Today, one in 54 people are autistic and they don't need a cure. But to be honest, they need more so they can live life that's more than just a chore and not be at constant war with their own mind. Around 700,000 people are on the spectrum, but not one case the same. Life without structure or frame. This is something we need to change. So someone like Emma can be on more than just council wage, and exchange her feeling strange and out of place for something better. So she can fight and not be like the others who had to give up and say good night, when all she really needs is for someone to help her.
To help her feel all right.
Lauren Fenton 32:50
~clapping~ Wooo- that's great.
Rina Teslica 32:53
Oh my god, I'm so excited to see this play.
Lauren Fenton 32:55
It was really great. Thank you. Tell us why you wrote the play and what you guys are all hoping to achieve by putting this on?
Sophie Jackson 33:04
So we were having conversation over Lockdown. Emma was just telling me all about- we were just going over memories, and recapping what what has been going on. And then I sort of just had like an afterthought of, what, how were you just left to not be in school? There's so many things that have happened, that I don't know how they've happened, but they have and it's too late to change them. But it was kind of like seeking justice. I guess this is why I started writing. And then it- Yeah. And then Connor obviously helped me develop it and it's kind of gone on to this whole thing. Now. So yeah,
Rina Teslica 33:43
Amazing. Amazing.
Lauren Fenton 33:45
Has it been a tonic? almost therapeutic, for you both for you, Sophie to have written it, but also took it on through performing it together?
Sophie Jackson 33:53
I think it has been definitely therapeutic to write it. I think the first time we performed it, we didn't come into any arguments or any issues and it was really nice. There's been sort of more conversation between the three of us and it's been more difficult this time, emotionally, than it was last time, for whatever reason, but it's good because every conversation that we're having is sort of adding more things into the play that needs to be spoken about. And it's the whole idea of- we're all still learning about this, like this is all still really new to all of us even if it's like the lived experience of our lives.
Rina Teslica 34:31
Erm did you learn, Sophie like more about Emma's journey and her experiences while you were writing?
Sophie Jackson 34:40
I don't know why but I don't think it really hit me how bad it was that she was just left to leave school at that age until I was older and I've been through school and I've done my GCSEs and I've done my A levels and I know that Emma sort of left school with not very many GCSE. Yeah, it was shocking. It's awful. It's not on. It's always really bad.
Rina Teslica 35:00
Emma- was it kind of like a therapy session for you? That's how I would imagine it was/..
Emma Jackson 35:06
The Lockdown, I personally loved because it just allowed me to exist in this way that I've always wanted to. And obviously my partner couldn't go into work. That was amazing. And I felt like it really gave Sophie time to write this and we can have proper conversations about stuff that had gone on which like maybe before the Lockdown, like it wasn't even a case of, Oh, Sophie just was busy and didn't ask me or I was busy, and I didn't respond or whatever it was just that there wasn't that time to breathe and really, like, reflect back on all this awful, but also really funny and like hilarious, things that had happened to the both of us growing up,
…but I think that in itself was a therapy session. I think the first time around, as Sophie said, it was slightly easier, just in the sense that we didn't run into, Oh, hold on a minute, like, actually, I don't like that or whatever. But I think there's been lots of things that I've had to sit back and actually really listen to and go away and reflect on myself and think actually, like, this isn't all about you like, shock horror, like.. She might also be experiencing something, you know, on the same level that has nothing to do with you, and you should go away and actually think about that. And I think Sophie will agree that there's lots more stuff about her own journey with Neurodiversity. And I think that's taken me a while to come to terms with, like I'm sure my diagnosis took her a while to understand properly and I have tried hard now, this time, to, like I say, understand better about lots of different neurodiversities and what that can mean to other people, because as we've all said many times this process should be the beginning of learning about, you know, all sorts of different things that people go through daily. So yeah.
I also think it is difficult, I mean, it's difficult for me to hear Sophie say that monologue, because lots of that is true. And that did happen. And that's quite a heartbreaking thing, now as an adult to look back on, you know, on that. I find that quite difficult to swallow. And obviously, I'm just lucky that Sophie can do it in a way that I'd like my story to be told. So, there's lots of different aspects that come into it.
Lauren Fenton 36:15
And how have friends and family reacted?
Emma Jackson 36:23
There was one friend that both me and Sophie have, and I think he was quite taken aback, but I think what was quite interesting is a lot of my old teachers came. I think they were almost sickly sweet after the fact that they had realised that all this stuff was going on, and maybe, how badly I was treated by teachers. So, for me that felt like Sophie had given me this way to be like, first of all, fuck you. And second of all, you should be here because actually- you are the type of people that we want here, being confronted with your shitty behaviour. And hopefully, you can take you can take something from this. Learn, learn from it, and never make the same mistake that you made with me again, that's how I felt.
Sophie Jackson 38:27
I just loved the fact that it was a play all about Emma, like the sort of shady people that kicked her out of school and whatever. And she came back and did it on that stage, at the school. So I was just like that’s great..
Emma Jackson 38:38
I mean, I have to say just before I'm horrible about everyone I went to school with that there were teachers that I'll give an honourable mention to, for me who were really really nice to me and did genuinely want me to succeed. So it was nice to have them there because it was like, I kind of got, I finally in all of school, I never I never did well in anything socially, academically, I was never stupid I was never whatever. I just at that moment I just couldn't. I didn't have any extra Emma to give, to anything like hobbies, studying, anything. So it was nice for me to finally turn around to the people who did say, 'Come on if you apply yourself, you could do this this and this', to say well look, with Connor's help with the team. with Akimbo, with Sophie, I have applied myself and here you go like this is- you know, I finally I've done something
Lauren Fenton 39:33
Sophie, what about family members and your friends? How did they react to the play?
Sophie Jackson 39:40
I was so scared for people to see this, especially because when we first did it identifying as someone with OCD was very, very, very new and very, very raw and I was like oh my god, all of these people who never knew anything about me or what I was going through, are just suddenly going to find out pretty much everything, so I was really really scared. And I think like, the support that both our dad and our mum have given us, because it must be difficult in that you're seeing the play when you see it. But, as a parent, it's got to be difficult to watch your two children doing a play about how they messed up and that they didn't do things in the right way. But I think the response that we've got from them, isn't that like, oh, like, why did you write that? It was it was more like, what can we now do differently? To be better? That's what's really everyone wanted to be better afterwards. So...
Lauren Fenton 40:38
Yeah, that's good because every I mean, every parent fucks up their kids, that's, as the poem goes, but but not every parent has to see it put on on in a play, for them to see exactly how they fucked up their kids. But maybe every parent should.
Rina Teslica 40:54
I think every parent should.
Lauren Fenton 40:58
There could be a whole industry in this.
And Connor, what brought you to the play and wanting to get behind this project, and what do you hope it will lead to or achieve?
Connor Pearce 41:08
I think it was just something I could relate to. The sort of growing up with particular family dynamics was this idea that you've got one sibling that needs all the attention very immediately, and another sibling who also needs a lot of attention, but potentially less immediately, and how that then manifests into a very immediate need for attention, later down the line, because there's been like this level of suppression. And just from a sort of theatrical point of view, as a sort of dramatic narrative arc, it just felt like it really made sense and it was perfect, so Soph went away and injected all of her very recent experience as someone who lives with OCD into it. And then when I read that draft, I was like, this has to be put on this. It's fantastic. We have to, we have to go and put this on somewhere. At the same time, I was developing this production company, called Akimbo, and our whole sort of schtick was to see more projects like this out there. As we've been talking about, to bridge that gap between people wanting to know more, and actually getting access to good representation, but also people just feeling like they're being accurately represented as well. Accurately and positively represented.
Rina Teslica 42:20
That's the most important thing. I think.
Connor Pearce 42:23
If something's had a profound effect on them, the education comes anyway. And can often linger for longer as well, if there's that lasting effect. So it was like, Okay, we know what we need to do. Now we have we've, we've ticked the education box, now we need to really punch the audience in the gut with some more. Yeah, there's a tonne of layers to it.
Lauren Fenton 42:47
Sounds amazing, I'm really looking forward to seeing this.I’ve got big expectations.
Rina Teslica 42:49
Honestly, me too.
Connor Pearce 42:52
No pressure at all.
Lauren Fenton 42:55
I'm sure it's gonna live up to them.
Connor Peace 42:57
The only way we'd get a realistic representation of what these guys' lived experiences is, is if we have the rough with the smooth and the heavy with the light and the dark with the you know, the comedy. So, you know, they do a great job of, of staging some of the more ridiculous hilarious things they went through as well. And that's brilliant. Hopefully, that sort of contrast is what will have the sort of the impact that we're looking for.
Lauren Fenton 43:25
I'm a big believer in laughing through the grittiest and the darkest moments.
Sophie Jackson 43:31
So many funny things happen as well. I feel like so much funny stuff happens.
Lauren Fenton 43:37
Obviously, aside from completely changing the world, and the way that the world understands and embraces neurodiversity- is this the start of something then, Connor, for Akimbo in terms of, you said, this is kind of exactly what you wanted to take on in terms of a project that was more inclusive and told these kinds of stories? Is the plan to do more of these?
Connor Pearce 44:02
Yeah, absolutely. We're a really small team and we all have day jobs. So this is kind of like a, I mean, we all come from this industry but as I think we're probably all aware of, sadly, these kinds of projects manifest themselves in sort of commercial environments more as tick box exercises than they do to enact meaningful change. So we're trying to make this this kind of project profitable, so that we can just do this but meanwhile, we're also sort of in and around the full spectrum of the creative industry. But what's been wonderful is that we've had so much more engagement with people far and wide, this second time around, including, you know, you guys, bloggers and influencers and people like that, who share the lived experience sort of wanting to engage with us on it. And I'm just hoping the more that word can be spread, the more chance this project has of having a wider spread impact.
Lauren Fenton 45:07
One - are your performances going to be a bit more accessible in terms of the environment that they're in? And then also, how do we think or how to you, as someone in the industry, make steps towards a more accessible experience? Yeah, people not just kind of what they're watching but the environment itself?
Connor Pearce 45:27
Yeah, it's such a huge undertaking to be honest because by its very nature, theatre isn't an accessible art form. For anyone, you know, a lot of old school institutions are incredibly biased to a certain type of people that should be working in them and enjoying those spaces. That includes disabled communities and neurodivergent communities. And the theatres and institutions that seem to have all the resources and money at their disposal, find it hard to make these spaces accessible. So when you ask a little old indie production company, you know how, how best to do it for a Fringe Festival? It's like, well, the answer is nearly impossible. But we are constantly having conversations between us about how we can achieve it on the budget we have, and with the resources and time we have.
I think it starts with the with the play itself. You know, it's no good speaking a gospel without the people that that actually are affected by it in the room to engage with it and share their experiences as well. It just doesn't work. So the dynamic there is like, how do we show a difficult neuro diverse experience on stage for people who, who wouldn't understand what's that what that's like, because they don't live with it, whilst not making it so much so that it actually becomes uncomfortable for people who do live through it. So we've been, we've been trying to, this isn't something that we've come up with this has happened in really incredible indie production companies way before us, but we're trying to navigate the idea of a relaxed performance. So it just means that you can come and enjoy the show. It's not stuffy, duffy, old school theatre rules where you have to sit still, you can't, you know, you can't move, you can't get up and leave. If things things get overwhelming. Everybody has free reign to come and go as they as they need to in the theatre. It's kind of like a, just be considerate, mantra. It's like if you have to put it in one sentence, it's like, just be considerate. We're trying to caption every performance we have. We're also working towards an audio described performance. So what that means is people can access an audio file on their phone through their headphones if they are visually impaired. So that they get my voice unfortunately, describing the action whilst they're hearing the dialogue. So we're just
Lauren Fenton 48:10
Sounds great.
Connor Pearce 48:10
Yeah, we're just trying- we're not going to get it right, ultimately, and we know we're not going to get it completely right. And we just need to at this stage, celebrate the little victories that we can accomplish, that we know that it's, you know, it's not something we're gonna get right overnight.
Lauren Fenton 48:26
And I think that's, that's true in general, right. So I think like in bridging this gap, because that's the term we've used, it's like, actually, one of the ways that we bridge the gap is also don't be afraid to get things wrong, like learn from them. And we I know, we've talked about it before, but sometimes I think these things become so polarising, and people get so angry, and it's okay to get angry, but just make sure we're getting angry at the right people and the right things, not at people who are trying and who are listening and want to learn and do better. Yeah, it's like,, yeah.
Sophie Jackson 48:59
And I think especially now with like, ‘Cancel Culture’, and everything that's going on with that. It's so dangerous, because it's, there's so many people that will just cancel people for saying something that they don't know, isn't right, or they don't know isn't, although it's annoying that they don't know, because we do know. But it's like if they're then willing to listen and learn and change that, then cancelling them is just cancelling another person who's actually an ally and actually willing to listen and it's yes, yeah,
Rina Teslica 49:30
I think it's quite dangerous. And that the only way that you can learn is by making mistakes, like nobody's perfect.
Connor Pearce 49:37
What's difficult at the minute is like, how do we, because right now a lot of disabled neurodiverse people do not feel safe in theatre spaces for the right you know, for rightly so, because they're not, they're not built for them, like most environments that, you know, typical world and ableist world that we live in, but it's like how do we get the word out that we're doing these types of performances and they're very welcome there? Without as well, you know, kind of using our performances, as using those people as guinea pigs for, you know.. It's very, it's very difficult to navigate because you want to, you want to, you want to make them feel safe and welcome, with the caveat that it's like, it's our first time doing accessible performances, so I'm really sorry if we get it wrong.
And ultimately, we as small organisations and units should, and it's the same for your you guys with your with your parents help group, you know, we shouldn't be shouldering the burden of trying to fix the world's problems. You know, we like you guys should have direct access to the right specialists and medical care and therapy care to get the solutions you need with your lived experience, trying to put a show together on a shoestring whilst making it accessible to everybody as well, you know, that.
My point is that the society we have built ourselves, as even whether you're neurotypical or not, does not serve anybody. It doesn't serve anybody. And I don't need to tell you this as four women, you know, because you know, and this is another this is the other thing I have to say is that I come to this conversation with the shitloads of privilege, absolutely truckloads of it, you guys come to the conversation with varying degrees of privilege too. You know, we're all we're for white people, we're five white people, you know, we can't speak on this conversation from a heritage and race perspective. But it all counts- this conversation is, any conversation like this is so intersectional, you know, and the, the oppressive systems that aren't working for us, aren't working for people that don't look like us, too. And it's only by us all coming together and sharing experiences that we can dismantle oppressive systems
Lauren Fenton 52:03
15 to 20% of the world have displayed some neuro divergence. That's more people in the world than have blue eyes, or yeah, red hair, or whatever.
Connor Pearce 52:19
That's what I was gonna say is that, what gripes me is when people who, you know, claim to be completely neurotypical, or completely the other side of whoever the oppressed is, whether they're sort of director oppressors or just sort of part of that system, is they're kind of people who are scared of like, a change in the other direction, like they're gonna lose a part of their identity, or they're going to lose some privilege that they have. And it's like, it's not working for you, either mate. Who are you protecting? What are you trying to uphold here? Because whatthe biggest suicide rates are in white men, you know, so it's what are white blokes doing, upholding a system that's killing them
Lauren Fenton 53:05
Not working for them.
Connor Pearce 53:08
It's not working for them either. And that's what. It's down to education. It's going take everybody to change it.
Lauren Fenton 53:18
Yeah.
Emma Jackson 53:19
So I just wanted to jump in and say quickly as well, I know this is following on from your point or not, but I I do feel too, that there needs to stop being this idea that it's my responsibility or Sophie's responsibility or Connor's responsibility, or both of your responsibilities to educate you about something that you can go away and research yourself. Now I take that there isn't a lot of information about girls with Autism, that's, that's slightly different. But, you know, there's enough out there that you can go and educate yourself, to a degree, I shouldn't have to be standing up and being like, now this is what I'm going through. This, this and this is where you need to be careful of. But no, you need to go and take that responsibility. And learn.
You know, I'm I am sick of people saying as well but there's not, there isn't enough out there. Because whilst that's true if you look for it, and if you're genuinely committed to making things better for everyone, not just neurodiverse people, but everyone- you can do that. It's like it does start in school and introducing that more and not being so afraid of the abnormal normal, if that makes sense. Because it comes from people being like if you see someone with a physical disability, for example, people on the Tube, people are automatically like, oh, well, I'll just I'll stay away and I won't look at them and I'll I'll be you know, I'll put my head down. It's like, fucking hell, like get a grip that you know, I mean, like, this is our issue. Why why are we not, you know, doing more ourselves? Why does it take this push ? I know that the answer will be well, that's just the society that we live in. But, so let's all do something about that, then, you know, I feel a lot of pressure that a lot of the time, I'm sure that like my system, Sophie will say and Connor that I'm constantly like, oh God, like I don't want to upset, you know, people in the Autistic community. I don't want to upset people in the Neurotypical community, I'm constantly thinking, but like, it gets to a point where it's just everyone's different and, and like, we all need to just come together and find some common ground that works for everyone. And it just isn't that difficult. That's, that is the point.
I really hope that in doing this, maybe we can all get better at that. I think it is just tiring. I do just want people to realise that Autism and other Neurodiversities don't have to look how they've previously been presented to look. And yeah, it's not the responsibility of the people that have these adversities or physical disabilities, or what that looks like to you. That's your responsibility.
Lauren Fenton 56:09
Everybody has the responsibility to learn and do better. I think is what you're saying, and, yeah, we'll get there, guys.
Sophie Jackson 56:22
But look at us all now we're all trying to make people learn and we're all learning off each other. And it's so nice to hear like that. For like, my inner child, wherever it is. So nice to hear that there's like all of you guys getting together and wanting to learn, not just trying to get your child to fit into these boxes, but actually like being like, yeah, this is it and this is I just think it's really good.
Lauren Fenton 56:45
Likewise, I
Rina Teslica 56:46
honestly feel
Lauren Fenton 56:47
So delighted that you guys are doing this. I mean, I like God, Sophie, I really want my children to see this.
Rina Teslica 56:52
Exactly.
Connor Pearce 56:54
Yeah, I think it's really important to say as what because a lot of the conversation around well, you know, if we make it a more neurodivergent world, like, you know, aren't we just going to have people that can't really fit into society, you know, how things have to be. And it's like, the reason why it feels very us and them right now is because the world and environment were built for ourselves- unable to unlock the brilliance that comes from people who are disabled and neuro divergent. And that's not me saying like, that there's this there's the whole autistic genius trope, you know, which autistic people don't need to be geniuses to be accepted in society and be given job opportunities and start families at all. But what is true is that often autistic people, neurodivergent people and disabled people who have very different lived experience, than, you know, quote, unquote, able bodied people is that they see the world we live in, in a very, very different way. And that can often be harnessed to make some really powerful and wonderful change. That's what I'd say to anybody that's like, but what does the world look like that can cater for everybody? It's like, well, a lot, a lot, a lot better. And maybe, you know, there's a place in world leadership for people that are neurodivergent and disabled, not maybe I mean, there fucking is.
Lauren Fenton 58:28
The richness of, there's so much value and I see that, like my younger daughter, she you know, she has a different set of skills and things that are wonderful about her that don't neatly fit into the bracket of what society or certainly school expect of an eight year old kid, that she makes me see the world differently, like, things that she notices the way that she behaves, when she hears music that she likes, or, you know, these things that, you know, I don't see a neurotypical- I hate using that term but neurotypical kids- I think they're beautiful and actually should be valued for just bringing something different to the party.
Connor Pearce 59:10
Yeah, for sure. I mean, that that as a baseline is true. And I think that why it's been really important for us to put this play on and and have the conversation we're having in an environment like theatre, is because there's no one way to do theatre. There is a million, there's myriad ways to do theatre to put on, you know, a performing art but strong and impactful theatre in whatever way it manifests, can have a resounding effect on people you know that that's true to for any good theatre. So what irks me is that, that of all environments out there should be an environment where we're welcoming people that don't fit into society's rigid boxes..
Sophie Jackson 59:58
Especially because we use stuff like Atypical, the TV programme. I don't know if people have seen that- and we use people who like for entertainment and don't represent them, right.
Connor Pearce 1:00:10
And so I think bringing those sorts of people with those perspectives and ways of seeing the world into a space where we have the ability in this space to change worldviews, to change perspectives to make people see things differently. It should be the number one go to place for you know, people, neuro divergent and disabled people should see opportunities in those spaces a-plenty. They shouldn't be feeling like they don't belong in them, or they're not welcome to them. So that I think that's my hope with how many other 1000s of children out there that that could unlock.
Sophie Jackson 1:00:45
I think if people are going to take away anything of it, like we're at the starting point of change. And it's going to take a long time, but we are at least acknowledging it now.
Rina Teslica 1:00:54
That is beautiful, like, a perfect description of what you guys are trying to do. And I applaud you from afar.
Lauren Fenton 1:01:03
Thank you. Thank you so much. Yeah. That's brilliant. And I, you know, can't wait to see the play. I can't wait to see what you guys do next or where this play might end up or go. After this runs. It's really exciting, guys. And I love everything that you're doing.
Rina Teslica 1:01:19
Definitely. Thank you so so so much for your time. It's been wonderful chatting to you.
Lauren Fenton 1:01:24
Before we finish this, do you have a fucking normal that you want to share?
Rina Teslica 1:01:26
Connor?
Connor Pearce 1:01:27
Oh, yeah. So my fucking normal is finally getting to a place where I can laugh at my intrusive thoughts. My fucking normal is I've now got to a place where I can just laugh at that shit because it's ridiculous. And I think a lot of what they teach you in CBT, and sort of coping mechanisms for that type of OCD is just seeing the funny side.
Emma Jackson 1:01:50
So my fucking normal is pretending to be on the phone to someone, so that people do not come up to me or my daughter in public, so I can avoid social interaction at all costs.
Sophie Jackson 1:02:13
My fucking normal is literally damaging my ears because I have to listen to music so loud to stop thoughts sometimes. Yeah.
Rina Teslica 1:02:25
Oh, thank you. Thank you.
Lauren Fenton 1:02:26
We really look forward to seeing the play. And hopefully, you guys, for maybe a drink afterwards. And
Thank you so much for listening to the Fucking Normal podcast. We love making this podcast.
Rina Teslica 1:02:42
Yes, we do.
Lauren Fenton 1:02:43
We are part of a much bigger team, almost exclusively all parents of disabled children. And our goal is to reach as many people as possible and create a community of support for parents and carers who share our experiences.
Rina Teslica 1:02:57
So if you've liked what you've heard, please like and subscribe so that we can reach out to more people. You can find more information on this and other episodes at fucking normal podcast.com That's f k ing normal podcast.com you can join us on Facebook and on Instagram at fucking normal underscore podcast. That's f k ing normal underscore podcast. You can get all the links and more information in the show notes below.
Lauren Fenton 1:03:21
So thanks so much for listening all the way to the end. We'll see you next time.
Transcribed by https://otter.ai
