Epiosde 12: Telling your own story with emmett de monterey
~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 0:16
This is the fucking normal podcast, the cheers, tears and Friday night beers of parenting disabled children.
Rina Teslica 0:24
I'm Rina,
Lauren Fenton 0:25
and I'm Lauren.
Rina Teslica 0:26
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 0:40
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 the disabled child or adult. So expect bad language, and quite frankly, some brutal honesty.
Rina Teslica 1:00
Because really, what the fuck is normal anyway?
Rina Teslica 1:14
Welcome to the fucking normal podcast. We're your hosts. I'm Rina,
Lauren Fenton 1:18
and I'm Lauren.
Rina Teslica 1:19
And today we'll be talking about owning your own narrative. So far, we've talked mostly with parents with disabled children. Families that, like Lauren and I, are not in a cliched, carefree, Pampers advert of a parenting path. Like all mothers, we're learning about our kids as we go. And as they grow. Learning who they are, what their needs are, be that medical or emotional, we're making decisions and advocating for them and also crucially, trying to help them to understand their own identity. What is their story? We hope that they will be able to take ownership of their story, and that we are giving them the tools to feel proud of who they are, and to take up their place in the world. So today we'll be talking to Emmett de Monterey on his story.
Lauren Fenton 2:01
So who is Emmett. Emmett grew up in southeast London during the 1980s. He was diagnosed as having cerebral palsy at 18 months old, and at times has felt the full weight of society's prejudice, both ableist and homophobic. Undergoing cutting edge surgery in America at age 12, Emmett was a charity poster child for a groundbreaking gait surgery for cerebral palsy, something that would lead me to confused emotions and sometimes scorn from the disabled community. Now Emmett has written his life story in a truly wonderful book. It is both heartwarming and heartbreaking, as he describes his hopes and dreams, at times his shame and disappointment, and ultimately his fight to be seen and accepted for who he is. We're also welcoming back Gemma Sherlock to join the discussion today, who we interviewed in episode two of the podcast. As a reminder, Gemma is mother to two boys, her eldest Jasper now eight has cerebral palsy. She's recently got to know Emmett and will lead off our discussion with him today. So welcome Emmett and Gemma. So great to have you both. Yeah
Emmett de Monterey 3:10
Such a pleasure. Thank you.
Gemma Sherlock 3:12
Yeah, I was going to just say how beautiful your book is. And I, I haven't got all the way through. But what I have read so far has been really moving for me actually. Because it's something that I've thought about doing myself potentially writing a story of mothering a child with a disability. And yet something's always stopped me from doing that. And I think really, it is that line between where is it my story? And where does it become his story? And I was fascinated to know how you had approached that. You write so sensitively about your parents experience. In a way that's so graphic as though you were there? Did you sit down with them talk about that time or How did you approach writing?
Emmett de Monterey 3:59
I should just say that I was selected to be part of a scheme run by Penguin Random House called right now, which discovers and nurtures new talent from communities that are currently underrepresented in publishing. So I sort of won a competition to write my story. I was one of 10 writers to be asked to write my story. And so when I told them what was happening, and that I had decided to write my story, I realised that actually, I couldn't tell it without their input, because it's not just my story. And as you say, it's the story of a family and the story of the way all of our lives changed with my diagnosis, not just mine, but their hopes and dreams for me and their, yeah, the visions of life for themselves that they had, you know, radically changed when they got my diagnosis. So, the way that I approached it was to kind of interview that or not in a formal way. I didn't sit down with a dictaphone and kind of, because I was very aware that for the first two or three years that I write about, I was there, but it wasn't really happening to me, it was much more at that point happening to them. So I really wanted to know, how they had felt, you know, what their anxieties were what just what it was like to suddenly have this diagnosis and have to learn a new language if you like.
Gemma Sherlock 5:26
But it's interesting that you, you feel that those first early years, like the diagnosis years, weren't happening to you. Because you they were happening to you. Because it's pre memory, I suppose. And they are your advocates and your carers. As parents, we do kind of take ownership of that part of your a child's story. And at the moment, that still does feel very much like my story does not feel where you are at the moment, we're on the cusp of that. And as Jasper turns eight, and is becoming, you know, a separate being in so many ways. And in so many ways, not, which I'm sure we'll get on to that then makes me question how much of it is my story and how much of it I've created and imposed upon him and how you allow that to flourish. And I think being able to write it down, go back in time experience what they're experiencing, and then find your own voice from that must have because it was a therapeutic process, or?
Emmett de Monterey 6:30
That's a really interesting question. I think the most honest answer is that I hoped it would have been much more cathartic, and turned out to be. And one of the reasons why I wrote it was for the boy that I had been, because obviously, I'm in midlife now. So it felt like a kind of safe vantage point to write it from, because a lot of the challenges that I write about in the book, I've now safely traversed. I've got a relationship, I've got a future I've got, I'm much more settled than I was. But I'm afraid it didn't feel cathartic, actually, it felt, you know, when I submitted it, finally, to my editor, I had expected to feel resolved around it. And I just don't, quite honestly, I'm really pleased to have written it. And I'm really, and I really hope that it resonates with people and that it finds an audience. But it was a much more emotionally complicated process than I had imagined. Although having said that, you know, I'm very glad to have done it. Very glad to think of any opportunity. I think, as a disabled person, because ableism is so insidious, you know, internalised ableism is still a factor as well. It's not a process that can ever be fully resolved, because you're always in relation to the society in which you function. It's never something that stops in a way, in a way that as a gay person, you're all you're always coming out, you know, that's never a process that ends, whatever social situation you're you're in, there's an opportunity to either come out or not, there's a decision that you have to make. So it's kind of similar to that.
Lauren Fenton 8:17
In the process of writing it and talking back to your family, were there any kind of revelations for you? Because, like, say, there are things that you were learning about that you didn't have memory of, or perhaps that hadn't talked about before with your parents, like your birth story, or the specifics of your diagnosis? Were there any revelations for you?
Emmett de Monterey 8:35
There were lots of things I didn't know and there were lots of things I hadn't wanted to know. And what really struck me and really made me feel sad, for my mother in particular, was just how alone she felt with it. Because I hadn't really understood what a trauma it had been, I mean, a physical trauma, what a physical trauma it had been for her. And I have, I have to state that, you know, this is in the late 70s, which is a very, very different time, to the time that we're living in now. And you know, her body was kind of, for want of a better word taking control of during my birth process. She told me she wanted to get up and walk around, and she literally couldn't she was forced onto her back. So anyway, I don't want to go into that too much of what I understood in a way that I hadn't before just what a trauma it had been for her and, and how much sadness and regret she has around that, you know, we have a great relationship. She's a wonderful person. She knows she's terrific, and both my mum and my dad are but yeah, I suppose I felt really sad for her. And as a younger disabled person, I was very focused on my own grieving process my own and coming to terms with what my diagnosis was and what my physical limitations were and, and how the world saw me as a result of that. And I hadn't To be frank, I hadn't thought about my parents,
Gemma Sherlock 10:13
and neither should you. It's a fascinating process to go through when you write your memoir, and to go back into open your mind to your parents experience. I mean, not many of us would ever really do that maybe having children does force you to kind of have a new understanding of your parents, but particularly under those kind of extreme circumstances and all the surgery then went through the experience for her, and also probably caring for your mental well being, I think it's incredibly compassionate of you to be able to put yourself into her purpose, because really, it shouldn't, you should, it shouldn't be for you to she wouldn't want you to have to do that. But you've chosen to do that. And it comes across really, really sensitively in the book is just Oh,
Emmett de Monterey 10:56
thank you very much.
Lauren Fenton 10:57
I guess it's like Rina said at the outset, we've largely talked to parents in a similar boat to us. And as Gemma said, your mum comes across as just the most amazing woman in this book. Clearly, not every everything that parents do helps or is in hindsight, the right thing to do. Parents make mistakes. But it sounds like you had a very empowering and safe home to grow up in like that all that love and acceptance was huge. It's big question, what did they get right your parents that you know, we can learn from as parents to disabled children?
Rina Teslica 11:33
Please share share.
Emmett de Monterey 11:35
I don't want to... well, why not boost them unreservedly? I would say they got most things right to be perfectly honest, they were staunch advocates for me. And they fought for me every step of the way from investigating medical options. Fighting for my schooling, I was one of the first people to undergo the process of getting a statement of special educational need. I was, I was one of the children in the pilot scheme around integration into mainstream school. So they, they pushed for that. And every step of the way, my parents wouldn't just take the received medical wisdom, they would always ask why. And what's the benefit? If you're, if you're proposing an intervention, be it surgical or social, for our child? Why, and actually, they fought for me to get into mainstream education, because I write about in the book that I was in a disabled nursery to begin with, and my mother and father were very against the idea of segregated education for the disabled, because disability in this country currently stands at 22%, you know, of both visible and invisible disabilities, and they didn't want me to be hidden away in any way. Because, you know, I think we need to rethink our relationship as a culture to disability because it's, it's a it's a material fact. So why should we be hidden away as though we don't exist? So and when my parents were saying to the people at my nursery, that they had this idea that they wanted to put me into mainstream education, the principal said "oh the world can be very cruel. Children can be very cruel, and there's always going to be a space for him it, should he need to come back." And actually, I flourished in so I kind of it's a long answer, but they really did everything right. And the the internalised ableism, that I began to feel an experience later on they were very distressed by. They fought for me to accept myself, much more than I could initially. Because as I grew, I began to see that people didn't look like the people didn't walk like me. There were things that I couldn't do.
Gemma Sherlock 13:57
Do you remember that time of consciousness of feeling different from other people in
Emmett de Monterey 14:03
Very much
Gemma Sherlock 14:04
Do you remember what sort of age it was? I'm fascinated to know, because I think I think Jasper's always had an awareness that he has some differences, but we talk openly as I'm sure you guys do, as well, that print everybody has something, but I think he has an underlying understanding of disability but he still doesn't quite know what that means. So I'd love to know what your conscious memory of your own disability?
Emmett de Monterey 14:31
It's a really ordinary kind of quite prosaic moment, I was walking down the street with my mum and I had I was initially carried, and then I started to walk on a rollator, a children's sized rollator and then I sort of graduated from a rollator on to my first pair of baby sticks. And I was learning to work on those and finding it quite difficult. And I walked down the road with my mum one day, I think just to the Sweet Shop And it was a very sunny day, so there were shadows on the pavement. And I remember watching her, she was a few steps ahead of me. And she was just sort of swinging her arms and just kind of she had this relaxed, lazy rhythm, you know, and, and I looked at myself, and I could see my shadow. I must have only been about five or six. I mean, it was really that young. And I could see myself on the pavement. And it was the first time I saw the kind of image printed on the pavement. And I thought, it really frightened me, here was this person I loved most in the world and I became very aware of the distance between us. And I think I say, I could I could run to her, but I could never catch up. So I became very aware of that gap. As a very young child, any gap between you and the people that you love, and the people that take care of you, is very alarming.
Gemma Sherlock 15:55
Isn't it fascinating that it was a it was like a physical reflection of yourself back at you that you could then see your self not in a mirror, but they can almost draw in.
Emmett de Monterey 16:08
Exactly, exactly
Gemma Sherlock 16:10
that, to see ourselves, sometimes we need to take ourselves out of ourselves. And that was the moment that we suddenly saw the difference. I was watching last night crip camp again, I know we've talked about this, and for anyone who hasn't really, please go and watch it because it is even as a parent of a child with a disability. And I know you've been doing it yourself. It's just so eye opening. And there's a scene, it's about a camp just outside of New York in the 70s where kids with a range of all different needs and disabilities could go to camp like all of their friends, and be free for the first time from their parents and their carers and just hang out with each other and have a summer. And that a lot of those children then went on to do incredible things in the future in terms of disability rights. And there's a scene in in that film when they when the kids are sitting together talking about their parents, and they talk freely about how much they love their parents that how reliant they are upon a parent. And the the overriding theme of that conversation is the need for privacy, the need for freedom, the need for liberty, and it really hit me like a tonne of bricks because Jasper is so young, it's so easy to care for a small child. But as they grow, and they need more freedom, how do you how do I as a parent separate myself in that way, especially when they have seizures or you know. I have a camera on him all through the night. He's going to grow into a teenage boy, he's going to want freedom. Do you remember feeling angry or frustrated or parents and that like conflicting feeling of like needing their care but also wanting to be liberated?
Emmett de Monterey 17:56
I remember one of the physio therapeutic interventions that I went through pre surgery, so it was eight or nine, I had to have my hamstrings, my hamstrings were getting really tight and my I've got cerebral palsy to like Jasper. But my subsection of that is the spastic diplegia. So it means that my muscles all over my body are very tight, and they needed to be stretched. And one of the things that was produced was with these splints, these nighttime night splints, so I was basically strapped into these rigid plastic tubes with knee straps and ankle straps, and had to sleep in them. Oh my god I hated hated them so much because because I like to sleep curled up. And I like to my legs up to myself. And it was the first time I began to have real disagreements with my parents, because they wanted to follow the advice that they were being given. And they felt that they were being advised correctly. And I really I just hated them so much. And it meant that I couldn't sleep properly. And I would always call them in the middle of the night to be released from them because they were just so uncomfortable. And in the end we just stopped using them as a family and we didn't tell them
Gemma Sherlock 19:17
that's interesting because Jasper is about to start serial casting on his leg. So it's it's similar. He will where a cast for a week but they stretch the muscles and ligaments and then they'll switch it and they'll do that for four weeks. He knows it's happening and he's really angry about it. But he's grown into a very compliant complicit job because he's had so much surgeries, so much intervention, but he never says no, he's just coerced and everything and I'm the feel I'm the one that coerced and so I'm the split between my I'm doing it for his care, but then I just feel sometimes kind of monstrous, and he knows the casting is coming. I feel really conflicted about it because I know it's probably for the best. But to hear that, you know the anger that you felt is you has its, it's an emotional thing at what point so your parents said no no more.
Emmett de Monterey 20:06
They this is kind of on quite a selfish level, they didn't want their sleep interupted. They got to a point where they were exhausted. And it's an interesting point that you're raising Gemma about questioning what is beneficial? And what is ableist? And what is the that line between what is ableism? What is pandering to the medical model, it's difficult because you want to allow your child to celebrate their body, to be at home in their disabled body and to embrace their disability in a positive way. But at the same time, I hear what you're saying. And certainly, it's what my parents went through that you want to do what you feel is best for your child. And I really feel for you because at the moment, it doesn't sound as though you can have the conversations in the way that you feel you need to. So yeah, it's I don't have an easy answer. And I can't speak for Jasper's experience.
Gemma Sherlock 21:06
It's just a lovely opportunity to talk to somebody who to you Emmett, who lives a life as a person cerebral palsy as opposed to just parenting somebody with cerebral palsy. And with the benefit of hindsight, we're all different. Everybody's needs are different. And you can't answer anything specifically about Jasper. But just the flip side of it is, yeah,
Emmett de Monterey 21:29
That's lovely of you to say, but one of the reasons I was so keen to do this podcast today was that it's about the whole experience, that it's about the way it affects the children, the families, the interactions that we all have with wider society, and what they look like, how to protect one another from quite often a very hostile society. So it's a pleasure to have this kind of conversation,
Gemma Sherlock 21:59
Did a moment in time come when you were able to take ownership over your own medical needs and decisions? Like do you remember that being a kid? because obviously, up until now, I've made, I've signed all the agree, you know, the surgery forms and made all the decisions.
Emmett de Monterey 22:17
First time that happened was when I was about 10, or 11. I was under the care of Guys hospital at the time. And we had some very good consultants and a lovely woman who I write about in the book and she said, by the time your child reaches his adult body mass, he will be pulled off his feet into a wheelchair. And they suggested some quite haphazard medical interventions, which were the only things that were then available. A process of hamstring cutting. And also pills like Baclofen, which is derived from a Botulinum Toxin, Botox injections as it's now become, and my parents were kind of like, you haven't been able to give us a satisfactory answer as to what this will achieve. And they were quite bolshy and brave. And they said, We're not going to allow you to cut up our child and on a whim, it's not good enough, you know, because, you know, you'd get two children, and they'd have the same diagnosis. And they'd have the same surgical procedures, radically different outcomes. And then I was put forward as a candidate for this surgery, which at the time was really groundbreaking. And I remember going to Guys and being photographed and being filmed my my gait being filmed. On the way home, my mum said to me, and again, this is a scene in the book. She said, If you don't want to go, you know, we are that way. This is a family decision. But ultimately, it's your decision. And if you don't want to go and you want to have life in a wheelchair, then it's far from the worst thing that could happen. And it can be navigated and it can be embraced. Because I think she felt that one of the risks of the surgery is that I wouldn't embrace my disability, I wouldn't embrace my body as it was an actually, while I don't regret the surgery at all. And I'm quite glad to have had it still. And we'll get into more detail. I think it did increase my internalised ableism enormously and I think it took me a very, very long time to be able to inhabit my disabled identity with any degree of pride and and now that I'm in midlife and have an easier relationship with it, I have a great deal of sadness around it, a great deal of grief around it because actually, my body was never the problem. And the social model of disability, quite rightly argues that it's the prejudices of the people around you in the wider society around you. that are much. I can't speak for anybody else, or any other impediment than mine. But but in my case, certainly, the built environment is as disabling as my impairment and people's prejudices and people's. The barriers to my accepting myself are so pronounced still.
Lauren Fenton 25:23
Can we turn to the surgery then and just explore that in the book, you talk about the fact that you were in a documentary that you were filmed the whole time, there was a lot of tabloid stories about you. And as tabloid stories often are, they were with a over inflated potential outcomes from the surgery that you were undergoing. So that must have been and you talk about believing, believing or hoping that there'll be some sort of miracle through this surgery, as opposed to what the doctors and the medical people involved with telling you,
Emmett de Monterey 25:57
It's really difficult to I mean, I thought about this a lot as I was writing it, because it's, I have quite a difficult relationship to it still, because on the one hand, I'm very grateful and glad that I went through the surgery, and in some respects, because I'm still able to walk at 46. But on another level, going through that kind of experience in the public eye, was really peculiar. But I should say, as well, that we're a very small family, we're only three. And some of the journalists Well, most of the journalists that came with us, and the news crews that came with us, a huge media hoopla was actually really in some ways really good because you were too distracted, to be able to think about what was gonna happen. And the people became friends
Lauren Fenton 26:47
They gave you presents didn't they, in the hospital?
Emmett de Monterey 26:49
they became real friends. And they gave me a lot of care and consideration. And yeah, it was quite, it was quite useful in some ways. But But what was what was so difficult was, and again, I don't really blame them for this. But the media rhetoric around the surgery was quite simplistic. And I remember a headline, a particular headline from the south London press at the time, was boys sci fi bid to walk. Which again, makes walking the gold standard, which, which now as an adult, I'm slightly uneasy if
Lauren Fenton 27:26
You were so young, as well, I mean, like to read that about yourself in a newspaper, aged 12 were you?
Emmett de Monterey 27:33
Yeah, and I remember the surgeon came to me immediately, not immediately, because I was unconscious for nearly a week. But when I came round, he said to me, I'm quite uneasy about the notion, he found that the media can noise around now story really battling. And he was a scientific man, he wasn't a media person at all. And he just said, I just wanted to clarify something I want to say, we're talking in terms of improvement, we're not talking in terms of any miraculous outcome. So you will be able to walk well into adulthood, and it will be much more energy efficient, but it's not a miracle, it's not a miracle, and you will not be able to walk unaided. So he was he was very uneasy around that the media narrative. But I also don't blame the journalist because that was the story that they were tasked with telling
Rina Teslica 28:32
You were the poster child for this, did you feel like you and your family had to kind of play a role, you know, like, super grateful or super happy or because it was being played out in the media so much, and it turned into this thing.
Emmett de Monterey 28:47
Well I remember my parents were interviewed quite a lot for the QED documentaries, because there were two in the end because the first one was so well received, and they weren't interviewed on their own. And they were quite candid about, about what a bolshy teenager I was becoming. That how awkward I was becoming and about how I was stepping into myself. I wasn't too grateful. And I wasn't too like. And there were times when I certainly wasn't polite, and I certainly wasn't. Because it was it was awkward to be, even though it was well meaning it was awkward to be the focus of that much attention. And I remember the charity office, the charity was called 'One Small Step'. We helped them raise money to bring the Gait Laboratory technology to Guys hospital, and they I used to get a lot of mail, particularly after the documentaries aired. And it used to come to the charity offices and they used to go through it and then forward it to me. And occasionally, very peculiar stuff would come through like caricatures that people have drawn of me with Bible verses underneath. So there was this linking of the idea of disability with sin. The idea that somehow my disability was a test, or somehow my fault, something that I had morally fallen short of. I mean, so that was just bananas, and really upsetting for us to receive as a family. And in the end, we asked for them not to forward anymore of the mail, because it was really quite intrusive and peculiar. And it gave me my first taste of the way disability is problematised in our culture, and like the campaign that's going on at the moment, with that charity, Changing Faces, where they're trying to kind of interrogate the narrative, you know, that lazy Hollywood shorthand of if you're a villain, you very often got a facial deformity or, or a disability. Exactly. So, so why why has that become a shorthand in our culture? So that disability is somehow seen as a failure and a moral failure? And I find that really problematic.
Gemma Sherlock 31:06
Did you have any feeling at the time that you're actually losing, you could potentially be losing something intrinsic of who you are, and the idea that you're suddenly going to have this miracle and you could walk? Even though that really wasn't what it was? Did you inside have a feeling that actually, I quite like this?
Emmett de Monterey 31:26
I'm afraid I'm afraid not. That's something that's come to me in much later life. And I'm sort of ashamed to acknowledge how long it took me to inhabit my disabled body. With anything like the pride. The messages I've received as a child I internalised enormously. And I really believe that the messages that I was receiving about that I was the problem, and that I needed to be fixed. And so when that fixing process didn't didn't look like I imagined it would, I went into a very profound grief, I write a scene in the book of where they take my I get Guys to have my cast taken off, and they take the bandages off, and they take the stitches out. And my parents, my grandmother's, they're looking after me, and I have my first bath for like months, I'd been having sponge baths and washing my hair in the garden. And they leave me alone from for a while to just look at my new body and look at my legs and my grief around it is so profound, because I remember looking at them and thinking, they've changed but they haven't changed me as much as I had hoped and would have liked them to. And I say at the end of the chapter, you know, I would always be walking, but I would always be balancing on my hands. So, you know, it was a change, but it wasn't nearly as much as I wanted. And now that I can inhabit as a person in midlife, who is very healthy actually, and is walking and having a rich, full life, I have a great deal more compassion and respect for my body. And one of the things my mother particularly, was quite anxious about around me having surgery was that I wouldn't be able to embrace myself, but that it would potentially alienate me from my disabled community. And in fact, that's exactly what happened. You know, I was in mainstream education, I didn't have any disabled friends, I didn't have a disabled community or a disabled culture. And so I was always in a position where I was feeling like I had to play catch up and change in order to fit Yeah, exactly.
Gemma Sherlock 33:48
Or somehow not as much as? I had a sort of flip experience in that when I was 18, I broke my spine, from the top of my neck down to there. I was in hospital for a long time, I was told early on, you won't walk again. And it was that realisation as a young teenager that I'm going to live my life as somebody who doesn't walk and in a wheelchair, trying to grapple with that in my head, this feeling that I'm going to be somehow I won't be able to have these friends anymore, and I won't have the same life anymore. And as it turned out, I have surgery and I can walk they just fixed it with a plate. But I definitely went to that space of just thinking like my whole life is going to change and feeling like it would be a profound loss which I have guilt about to because I look back and think loss of loss of of certain things but also just moving into a new as an older person you we innate we embody our bodies, and we can feel the edges of life suddenly and we're so grateful for what we have, our health. And we can feel you know, the time so much but as a teenager as a young person as you were, it's just as In that last session, imagine, yeah, it really might be as much as
Emmett de Monterey 35:03
It really was. And I love your expression that we can feel the edges of life. I love that, you know, you're conscious of how much time is behind you, and how much time is left. And I, you know, I wrote one of the reasons for writing the book was, I wrote the book for the person that I was, to kind of it was the kind of book, you know, representation matters, and positive representation matters. And no, I couldn't read anything like that it didn't exist, I didn't have a narrative like this, the only book I've read about disability with my left foot by Christy Brown. And obviously, it's a very different context to mine very different time periods of mine, he also didn't have to grapple with with the understand that he was gay. So I, there's a lovely quote from the writer, Toni Morrison, where she goes, if you can't find the book that you want to read, then you must write it, it's quite challenging, because I'll never be as good a writer, she was
Lauren Fenton 35:03
It's a stunning book.
Emmett de Monterey 35:09
Thank you. But I wrote it for him. And I was really the story that I needed. But going back to what you were saying about, you know, our shifting relationships with our physical selves, I, I still sometimes have a difficult relationship with my body. And I would be disingenuous to say that it isn't an ongoing process. Because because I don't exist in isolation, none of us do. And the ableism that I experience, is just enormous. And it is disabling much more than my body is, you know, the things that society demonstrates about me, every time I go out of my front door, unfortunately, it's still a real factor in how I navigate my own identity. And it's something I'm really interested to hear about from the three of you about how, as, as parents of younger children, what your fears are around, around that as they grow.
Lauren Fenton 37:10
I thought it was really interesting to me and your book that a lot of the ableism and prejudice that you are experiencing from outside of the home, really, as you go through the book, actually. And you move to this educational setting, that's more specialist education, actually, the prejudice and the the amount of prejudices you get there is homophobic, and it's like the narrative changes halfway through the book, as you're in that setting, and actually, suddenly, almost not disabled enough to fit into that world, if I can put it like that. But too queer to pretend otherwise. Although you do, talk about how you pretended to have a girlfriend and try to mask that, yeah, it really struck me when I was reading it that actually, a lot of the time when I think about Bea as my disabled child. I do think about her identity and who she is, you know, as a person broadly, but it always has that disability angle to it. And
Emmett de Monterey 37:10
it's always the lens isn't it through which your looking at something.
Lauren Fenton 37:18
Yeah, exactly. But actually her identity as she goes up. And we've talked about Andrew Solomon far from the tree on the on the podcast before and I know you read it amazing, but But it's like this assumed version of her identity, this assumed way that I think that she's going to see the world or feel the world or look at herself. It really it really challenged my assumptions about who she's going to be, are we going to be always going on about fighting for inclusion and fighting against ableism? Or is there going to be other strings to their identity, of course, there is, of course, there's going to be other strings to their identity that and I God hope that they aren't things that they're going to be bullied for or encounter prejudice for
Gemma Sherlock 38:57
those other facets that will happen to our children as they grow up, that have nothing to do with their disability, or things that will become their own narrative and story. As with us finding your own sexuality, or discovering that your daughter has an eating disorder when she's 14, and she's making herself really sick, those things will happen to our children as disabled people as much as they haven't anyone else. And I didn't know for you, Did you always know that you were gay?
Emmett de Monterey 39:28
No, unfortunately,
Gemma Sherlock 39:30
It's not something that was talked about, sexuality and disability.
Emmett de Monterey 39:33
It would be narratively much more easy if I had a defining moment where I could have gone that was it. But it was a much more gradual process for me. And I remember, I went to a very kind small state primary school near to where I lived. And as I was about to transition into my 11+ school, I remember sitting on the bench one day And and just seeing the boys play football and just wanting wanting to be part of that so much. And so my initial kind of sexual realisation was tied up I thought, again, my abelist internal narrative was tied up with what I thought was wanting to be normal. I idealised certain boys I knew. And I thought that that was simply because I wanted to be them. I wanted to climb trees, I wanted to kick balls, I wanted to I envied the way that they inhabited their bodies with such ease and confidence. Exactly, exactly. And actually, it took me a long time to recognise that there was a sexual component to that. And it wasn't just wanting to be them, it was something slightly more complicated. And as you touched on Gemma like, and then you went when I was about 14, or 15, and back in the disabled school, and beginning to understand that this wasn't a passing phase. And this was going to be part of my identity. It was so complicated, because as a disabled person, I was surrounded by other disabled people, but we weren't seen in any way we weren't encouraged to, to see ourselves in a sexual way. And the counsellor that I saw as part of my adjustment to the new educational setting, and also I write about it in the book, I developed quite our profound eating disorder for a short period of time. And my parents were splitting up. So it was it psychologically it was a complicated time. And she, she was a lovely person, and part of the reason why I decided to train subsequently, but she had found a manual in America of, basically, a sexual manual for people in wheelchairs with other disabilities too about how they could engage with each other in intimate ways. And this was, this was discovered and she was really castigated for it, because because the assumption was that any kind of sexuality wasn't part of our stories wasn't part of our identities at all. Which was really difficult,
Gemma Sherlock 41:12
dehumanising.
Emmett de Monterey 41:21
Yeah, absolutely.
Lauren Fenton 41:58
Othering completely.
Emmett de Monterey 42:23
Absolutely, that's exactly the right word. But I have to say it mirrored my own fears. Because I, you know, would occasionally buy kind of gay magazine on the way home. And only if the newsagent wasn't too crowded, and
Lauren Fenton 42:40
yeah you state that in the book! Only if it wasn't too busy.
Emmett de Monterey 42:47
Can I even reach like, but I used to get home and sort of read them. And I was terrified, quite frankly, because the images of gay life that I saw, were we're very much around nightlife and hedonism and physical perfection,
Gemma Sherlock 43:08
I'm guessing there weren't many disabled people in these magazines in the 80s?
Emmett de Monterey 43:13
I mean, it's quite different. It's quite different now. And luckily, we're in we're having a different moment around body positivity. And although I have to say I don't want to be falsely optimistic. I think there's still enormously long way to go. And I think yeah, it's I don't think it's, it's still an easy path to tread and I think, yeah, most people would still not deal with it. Which was another reason for writing the book. But I remember, you know, again, my lovely parents, I remember coming out to my mom finally, which was a surprise to absolutely nobody you know, because I've been drawing endless pictures of Elizabeth the first. I don't know why it was her but and also I was Yeah, exactly she was a queen!
Lauren Fenton 44:02
I love that your mum got you that dressing gown in the book that you describe, the silk dressing gown,
Emmett de Monterey 44:10
she didn't get it for me. I stole it
Lauren Fenton 44:11
yes you stole it from her. Sorry.
Emmett de Monterey 44:12
I didn't have a dressing gown. I didn't want a white towelling boring one, I didn't. I was feeling much more flamboyant. And I was this was really weird. I was hiding in plain sight. It was almost like I wanted somebody to guess I wanted somebody to ask me because at my first night in this boarding school I've got this amazing. Noel Coward doesn't have anything on this dressing gown. It was like the most garish, horrible kind of red silk thing with gold embroidered all over it. And the girl who would subsequently become my girlfriend, she wheeled up to me in her wheelchair. No, she gave me her name. In the book. I call her Rebecca. She gave me her name and she kind of said: "Oh, I like your dress". And I kind of looked at it, and I was like, I could actually make less of an impact if I was wearing a dress. You know, in my home environment, being myself was not a problem. Both my parents were incredibly liberal, and didn't tell my dad for a much longer time after I told my mum, I feel guilty about because all the assumptions I've made about my dad's reaction, actually, he was fine. And he just loved me. And also, he knew as well.
Rina Teslica 45:30
He probably knew before you.
Emmett de Monterey 45:33
Yeah. But to go back to what I was saying earlier, which is kind of the crux of where I was going with it, I came out to her, and then I had to almost immediately go back in, because she was driving me back to school. So then back into hiding. And she said to me, Emmett, I'm so worried. She said, obviously, you've got no choice, you've got to express it, it's you. It's as much you as your disabled self. So you've got to express it. But I'm really worried that you're not going to find a partner that you're not going to find the love that I'd like you to find. And from what I know, I'd grown up with several kind of honorary gay uncles who were friends of hers, who were lovely role models to be around, but they weren't disabled. You know, they weren't. They weren't people I could follow in that way. And she just said up from what I know, from them, of the gay community, I'm, I'm really worried, because I don't necessarily think that you're going to be embraced
Gemma Sherlock 46:33
controversial to say, but I think I definitely have this feeling sometimes just that, because he's at a mainstream school. And there are there aren't really any other kids with disabilities in the school, and he has friends. But a lot of those friendships are fostered and encouraged by their parents. And there's a definite feeling of, you need to play with Jasper, and they're so kind to him, and they embrace Him, and He loves to be with them. But I certainly have a small feeling of like gratitude for them for including Jasper, and I suppose I would I worry, let's say he was gay or straight whatever, that there may be a feeling of pity or that somebody needs to take care of him or, or not just that pure, immediate love that I think you have with your husband, it's a true love that you find. As a parent, I worry, we'll really find out will be that case. And I think if you were to turn around and say I'm gay, it's like, how is this gonna work out?
Emmett de Monterey 47:33
Obviously, again, I can't speak for Jasper and I hope that he, I hope that all your children are able to navigate the lands. I mean, it's a long time since the period of time that I write about in the book. So hopefully, societally we've moved on quite a lot, but and I hope that all your children are able to find really rich experiences and be able to integrate into the world in a slightly easier way than I thought that I could. But I have to be honest, I'm slightly pessimistic about that still. Because I think there's a great deal of stigma still, and conscious and unconscious bias towards the disabled, I think there's an enormous amount of fear, and not distaste, maybe that's too strong a word. But I think, given the fact that the disabled community makes up so much of the population, you know, in terms of still not nearly visible enough, still not nearly accepted enough, still not represented enough. And actually, I think it was scope, the disability, charity, and I'm gonna get my numbers wrong, I'm terrible
Lauren Fenton 48:47
we'll put it in the show notes anyway. We can fact check.
Emmett de Monterey 48:50
They conducted a campaign called 'let's end the awkward', where they did a series of YouTube videos around, you know, ways in which the general public should and could approach the disabled and the language that they, they, you know, basically things to do and not do. And as part of that, I mean, I found it a bit difficult because each, it supposes that, that all disabled people are the same, and that we're coming monolithic, but for the purposes of a public conversation, you have to kind of be a bit more. It's difficult because there are as many ways to be disabled as there are people in the world right. You know, I was you know, when
Gemma Sherlock 49:34
You use the word disabled some people hate that word, it's difficult.
Emmett de Monterey 49:39
Personally, I love the word word disabled, I I really find it empowering or by and disabled. I hate it when people say differently abled or special or, you know, just be but that's me, you know, I want to be thought of in in a very basic, not basic way that sounds awful. Oh, yes, just just call me whatever. Well, first of all call me Emmett, because that's my name. If you if you have to refer to me.
Gemma Sherlock 50:12
Next book title?
Emmett de Monterey 50:12
But if you... I never want to write about myself ever again. Novel next time thanks. But yeah, I mean, again, I don't want to speak for anyone else. But I really I really appreciate the word disabled. And I know a lot of other activists do as well. I don't find it disempowering. It's just factual. It's, you know, language is difficult language is constantly evolving. But yeah, I just find it just the most helpful way to describe what I am. Yeah,
Lauren Fenton 50:43
a lot of the book talks about hiding and shame and kind of grappling with who you are. And you know, we call this episode, owning your story. It feels like it took you a long time to get comfortable with your own identity
Emmett de Monterey 50:57
a hugely long time. Yeah, absolutely. I'd say it's still a work in progress.
Lauren Fenton 51:01
what's helped the most for you to feel comfortable in your own skin to be comfortable with who you are, and own those labels and your own identity?
Emmett de Monterey 51:13
I think to be honest, I had a real realisation I write about this in the book, very sadly, quite a number of the people at my school. And one of the boys who was actually one of the boys that bullied me, he was a haemophiliac. And he died of AIDS because he got an infected blood transfusion or the fact that clotting factor that was used. And I won't pretend that we were friends. We weren't although we had a sort of rapprochement later in the book. But I went to his funeral, I wasn't going to go. But then I thought, you know, in a weird way, this man, this boy has been a really huge part of your life. So you have to go and pay your respects to him, you have to go and honour him. So I went. And I remember coming back from the crematorium in the headmaster's car, and I just thought, and, and I, it took a long time, it wasn't it wasn't an instantaneous moment of acceptance. And as I say, I think it's still a work in progress some days. But I thought your life might not look like what you wanted to. But it's the only one you've got it. You know, the title of my book, go the way your blood beats. James Baldwin says, If you don't go the way your blood beats, you won't live some other life, you won't live any life at all. So the onus was on me then to make the most of my experience. And I really felt like, you know, however difficult my life is, I have the privilege of still being here. And actually, I've got to, I've got to, I've got to grab it, I've got to embrace it. And actually, you know, I can't keep hiding. I can't keep apologising for myself, I can't keep being so uncomfortable. Because I'm, I'm missing it, you know, and life is wonderful. Life is really wonderful. And I know, you know, we spoke together before I came here today. And one of the things that struck me so much, and I've really thought about things is how much you know, your relationships have changed by being the mothers of disabled children, but how rich you find that, and how important it is, for all of you. And it's not the problem that society often likes to think, you know, disability is only thought of in terms of being a problematic thing, or, in a worst case scenario, a tragic outcome. And actually, you know, life can still be incredibly rich.
Rina Teslica 53:49
Those exact emotions are exactly what I'm sure the three of us have gone through, kind of, it's that grief process, but then it's like total acceptance and like, this is great, it can be great. And
Lauren Fenton 54:02
life's messy, right? Life's fucking messy, and it can be messy at so many points in your life.
Gemma Sherlock 54:08
Thank you for saying that, because I think we could all do and they could do so. I just realising what a privilege is, whether you have a disability or not. We all have flaws. We all have shit. Everybody has, you know, challenges and yeah, it's a privilege to be here isn't it.
Emmett de Monterey 54:28
It really, really is and I was shaving this morning ready to come here. And I noticed that more of my hair is going through and it's a lot thinner than it was and it's probably departing in the next.
Lauren Fenton 54:45
But that's a whole other grieving process.
Emmett de Monterey 54:48
This is the departure lounge for my Jewish hair.
Emmett de Monterey 54:56
you know, I really feel alright about it because because I'm here, and I've written going back to what you were saying about reclaiming your narrative and reframing, I've written my book, I have a husband, I have friends, I get asked to do lovely things like this, like, I have grey hair, I have a bit of a paunch, you know.
Lauren Fenton 55:19
Don't we all?
Gemma Sherlock 55:22
It's well earned!
Lauren Fenton 55:23
Exactly!
Emmett de Monterey 55:24
That's how, that's how far I've travelled, you know, and I used to not be able to look at my scars, and now I look at them in the shower. And I can't honestly say that they filled me with delight. But I have so much respect for how far I've come. And so much more compassion for my body. And for myself, I mean, the language around disability has evolved, thank goodness. But yeah, I was seen as a problem as a young child. And I absorbed that wholly, partially because of the surgical process, and partially because of what was just in the society around me. I'm still regarded as a problem by some people. And, and I know that many people, you know, on a homophobic level, think that what I do is revolting. That's one of the reasons why I was quite keen to get married and accept that other people, it's not a choice that they need to make, or it's not something that fits them. But I really wanted to get married, because I'm very aware that in a lot of countries around the world, people who may want to get married can't, and people are living in fear of being discovered, and in some cases, imprisoned or worse for simply for being who they are. So I, the day when I got married to my husband was really, it was really profound for me in in a way that I hadn't expected to just be able to visibly say, Yeah, freedom, exactly.
Emmett de Monterey 57:05
So I suppose the question that I'd really like to ask the three of you is, did you think about disability as my identity and the disabled community before becoming parents and experiencing it? And what's your relationship like now to the notion of disability in your own children? And that's a big, kind of a big question. So
Lauren Fenton 57:28
that's a really good question. I think that disability hadn't crossed my mind at all. My older child is non disabled, neurotypical. And she was under one and we decided, hey, whilst we're in nappy mode, let's go again. And I know that not everybody, you know, can fall pregnant as easily and I, and all of my pregnancy, I was just grappling with oh I'm gonna have two children. And I was feeling this like guilt for how am I going to share my time between the two children, and I had this tiny little Olivia, who was still a baby. And all I was thinking about was that, and I wasn't thinking about, quite frankly, I wasn't really thinking about who Bea was going to be.
Gemma Sherlock 58:15
I always think the decision to have a child is is so selfish, oh, it's all about us. And then soon as they arrive, it's the most selfless thing you'll ever do, and that's the shock of it
Lauren Fenton 58:25
it is completely change it and yeah, I think growing up, I didn't see a lot of disability. It was not something that was really in my consciousness, if I'm honest. So it was a shock. My instincts, all my reaction, as a parent was, of course, I'm gonna love this child, whoever they are. But it was just a whole shitload of unknowns of what their life would be what the future would hold. Would they ever be able to do this or that and, you know, it just feels a lot of that was about me. And my picture of,
Emmett de Monterey 59:01
but that's legitiamte too, I mean, that's one of the lovely things about the purpose of this podcast is like, to the whole family. Yeah. So your reality does change and it does affect your life. It's a collective experience it really anyway. Sorry,
Lauren Fenton 59:18
no, no, it's so true. And I think I was in denial for a long time. I've talked about that on the podcast before it was a I'm very organised, and I'm a planner, and I like to know what's going to happen tomorrow, 12 months, 10 years time, I have like, big plans. So this diagnosis that Bea got, and the fact I didn't know anything about 18Q deletion or what that meant, or what her childhood was going to look like a what her adulthood was going to look like, really kind of messed with that plan. It took me a long time to realise that I didn't need to have a fucking plan. And, and as Bea got older, you know, just as a baby still, I think, and you get to know your child and our identity, you meet other people and other families and you see other children at hospitals and you realise this isn't fucking the end of the world. I have a beautiful little girl who's going to be who she is going to be. And she is not just disabled. She's cheeky. She's a flirt. She She charms, the pants of everybody she's around, I think when she was about two, we were in a Carluccios. And somebody came up to us behind me and was like, I just want to say your kids gorgous. Yes. And so thank you very much, sort of chatting to them. They walked away. I was with my father. And he said, That guy really looked like Boy George. And I was like, Dad, it was Boy George. You know, whereas most people would go and like bother Boy George in the restaurant, he'd come over to talk to Bea because Bea had flirted and lured him in? Yeah, this is Bea and yeah, it was beautiful. I'm not going to pretend that I don't have moments of I wish Beas life was going was easier. I wish that she could communicate better with me that I knew what was going on inside her head. Like, I want to climb inside her head and figure out sometimes what she's really thinking or feeling. But God I think Gemma referred to earlier, I think I'm, again, it's but back to me, but and I think I'm a better person for having more of an understanding and an introduction and appreciation of disability in all of its forms. And it's amazing, not caring about the fucking shit that some parents care about the back, trivial crap,
Emmett de Monterey 1:01:51
because in some ways I can again, I can only speak for myself, but it does liberate when I finally became a bit more confident and a bit less a bit more able to reject the ableist narrative that I've been, it kind of allows you a bit more freedom to write your own script. Because if you think well, if society is not going to accept me so readily anyway, what does it What does those values matter? It allows you to question those values.
Lauren Fenton 1:02:18
fuck em. So I think I think, you know, it's a very long winded answer to your question, but I feel like I've, yeah, I've become a better person, I've learned a lot about myself, and I'm still fucking learning and trying to navigate this world with Bea and figure out who she is and who she wants to be and how she wants to tell her story. And
Rina Teslica 1:02:40
I'm very similar to yours to you. I had no concept of the disabled community, I wasn't exposed at all. I lived in a very, I my parents were very much the perfect family and everything has to be perfect. So when Lua was born, like she was a big black mark on our life and what we had imagined what I had imagined my parents, my partner, what our lives were going to look like. So for me, it was a big shock to the system. And it was a full on like grieving process. But I think having Lua has like, brought me back down to earth. I think I was very like floaty and like, Oh, yes. And everything's great and lalalaah. And she's kind of showing me what life is actually like life can be shit, that doesn't mean that it's shit, it just can be shit in that moment. In the beginning, we just didn't know whether she'd survive or not. So I've just appreciate life, because it can be gone in an instant, without no concept of what could happen in the future, or none of that. And I think that's also why I just accept her fully for who she is. I have no preconceived notions or ideas of what I want her to be, which is how I went throughout my try imagine
Emmett de Monterey 1:03:58
I mean, correct me if I'm wrong, because I don't want to, but that must be difficult to to kind of jettison your your vision of what life what you were talking about, just now, your vision of what life could and should be like when you're pregnant. And I'm sure you kind of fantasise about what you're going to do. Yep. And then you have to kind of reconfigurable all that and jettison some of it and embrace it. So that must be really,
Rina Teslica 1:04:24
it was it was difficult. I think that first I think it was difficult until I got to the point where I accepted her. And I think, because my partner he accepted her immediately, like the day she was born, we obviously knew that something was wrong. And he was like, okay, and like got on with it while I was like what's the fuck is going on?
Emmett de Monterey 1:04:43
I find that quite moving, you know, that there was just that instantaneous kind of this is my daughter. This is my child.
Rina Teslica 1:04:49
Yeah. Like no, no issues with what was going on. And I found that really difficult, but I think he just had no concept of like and we were young, he was 28. I don't think he like really thought about it much, or like hadn't been exposed to children very much. He didn't have that. Well, I did I had loads of cousins who had kids, and I loved children. So I obviously had planned something in my head where he had, he was like, Yeah, I'm gonna be a dad. Oh, she's born with a disability. Okay, we move. Let's go. Let's, you know, what can we do? So,
Emmett de Monterey 1:05:24
Sounds like good people?
Rina Teslica 1:05:25
Yeah, he's great. I have to say he is really great. But I think I've struggled with the fact that he wasn't grieving like I was.
Emmett de Monterey 1:05:34
Oh, that's... that's interesting. So you both had very different experiences totally different. So that did that mean that you couldn't support each other?
Rina Teslica 1:05:43
No, I, he was very, very patient with me. And he let me express my deep unhappiness for the for the, you know, for that first year, and I didn't bond with her because I was terrified, she was gonna die. So I was like, let me just not for my own healing, let me not bond with her for self protection all the way until she got the all clear. After seven months, we brought her home. And then I was like, Okay, fine. And he kind of let me deal with that and was like, look, it's fine. He was so so positive, which I found incredibly frustrating, because sometimes you need someone to be in the shit with you feel all the negatives, but
Emmett de Monterey 1:06:22
or at least allow them?
Rina Teslica 1:06:24
Yeah, he was just like, "No, this is how it's gonna be. This is how she is. And we just have to, like, get on with it and give her as much support as she needs." And I think his positivity really, like propped me up. Because I think when you're in a dark place, you only see that dark way. So to have somebody else's perspective in your ear going, actually, no, why don't you look at it like this, it could be like this, yes, it's shit, but also, and it's that but also, that really helped me to kind of look at it in a different way. And that's where I'm at now. And I think I just, I don't care about her disability, I just don't give a shit about it. Like, it's part of her. But it's not a defining thing.
Emmett de Monterey 1:07:10
It's an intrinsic part of who she is,
Rina Teslica 1:07:12
like something I just don't see anymore. You know, and it's liberating. And I hope that she also doesn't. It doesn't affect her when she's, I think, because she's so delayed, in terms of like, her cognitive understanding of what she is, you know, I don't think she sees Lua is on this planet at the moment. And she thinks everything is here for her. So she like lives through life as if like, we're all pawns in her life. So I think it'll take
Lauren Fenton 1:07:42
she's such a diva. I love her.
Rina Teslica 1:07:45
I just she just thinks that we're all here for her entertainment.
Lauren Fenton 1:07:48
We kind of are to be fair Rina?
Rina Teslica 1:07:50
That's how I live my life. I am just here purely to please her so
Emmett de Monterey 1:07:56
yeah, you have to please yourself too at moments.
Rina Teslica 1:07:58
I mean, please didn't have pleases me. I mean, if she's not happy, she will really let us know. So yep, I yeah, I just love her. She's the thing that's made me me and I'm forever grateful to have her. Yeah,
Emmett de Monterey 1:08:16
that's really it's lovely to hear. And I just I'm really struck by similarly to my parents who are advocates, you are for your children. That thing in the Andrew Solomon book about loving the children have, rather than longed for reproductions of yourself. I love that idea that you have to take a moment to readjust. And then if you can, I'm not saying that everyone can. But love the person that you have.
Gemma Sherlock 1:08:44
I think I've spoken about this before in that Jasper was just so ill when he was born for such a long period of time. We just felt like we're firefighting. Will he be alive tomorrow? Will he be like later on. And I remember having this conversation with Ro in the very early days, like, just let him survive, he'll be you know, whoever he is, we were just he was a long awaited baby. We'd gone through a lot of IVF we just couldn't wait to meet this person. And then it was just hoping that he'll survive and disability, you know, with the best possible outcome. In fact, if he walked in here, I've said this also before on the podcast today, you might not even notice his disability. That's That's how fortunate really he has been from where he started. When we were given his diagnosis, for example, I think they considered it would be a significant moment for us. You sit in the room and you're carefully given this diagnosis, but it just felt completely arbitrary because our babies alive is wonderful human being is completely irrelevant. And I think maybe it took us some time to start to realise that that part had finished that he was alive and that he was flourishing and that He did have needs extra needs that needed to be met. Obviously, we were meeting those needs, but that disability would form part of who he was. Everything he did was just like, wow, win win. Wow, amazing. And I remember meeting you, Lauren for the first time. And I can't remember if we spoke about this before, so I have I apologise. But we were in a physio session, and Bea, and Jasper, we're just learning to walk. Yeah, I'm shuffling, sort of using the bars to shuffle along. And Lauren and I were kind of working each other out.
Lauren Fenton 1:10:33
flirting. friendship flirting.
Gemma Sherlock 1:10:36
I just felt I remember how I felt in that moment. I just felt so elated that there he was, and he was doing, I didn't really even care what the outcome was. And I don't know if you are in a different headspace. At that point. I don't know where you were at that time. I don't know, if we really spoken.
Lauren Fenton 1:10:50
I think I was in it still. She's gonna walk, she's gonna walk. If I have to get her physio, like three times a week she's going to walk and because that's going to be her story. And I, I don't feel good about having felt like that, or thought like that. And that was my ableism,
Emmett de Monterey 1:11:09
that was my ableism to have, like, walking to me was the goal. Yeah, the absolute goal. And it was actually my mother who said, well, actually, you know, that's, that's not necessarily the only way to have a fulfilling life. And it's, it took me a very, very long time. To that, to catch up to that idea to understand it really.
Gemma Sherlock 1:11:32
Did your mom have friends who were disabled?
Emmett de Monterey 1:11:37
very similar to what you're saying. It wasn't a language that they knew. And it was the first time they had heard the words Celerbral Palsy or knew what it was, was when they were told that that was what I had.
Lauren Fenton 1:11:51
On the subject of therapy, like sorry to kind of rewind, but you You talk a lot in the book outside of the surgery, but about the physios in that original physio that drew smiley faces on your knees? Yeah. How? Looking back? How was that experience for you? I guess there were good therapists and bad therapists. But was it always kind of creating that additional ablest narrative that there was something wrong? Was it traumatising for you? Or was it sometimes fun?
Emmett de Monterey 1:12:22
I really, it's difficult because I the the physiotherapist that I get interacted with, there were many that were very good, many that were very caring. And obviously, I needed it not in an ableist way, but just saying I needed it to help me move through the world. I did really resent it, as I as I began to understand how long I would need it for and, and it was, it was time out of my day it was and also my friends didn't I wasn't in special education at this point. And so none of my friends had to do it. And it could sometimes feel quite punitive, it could sometimes feel quite punishing. And as you said, Lauren, it gives you the idea that you're somehow broken, or you need to be fixed or that, you know, worst case scenario that it's your fault. And we talked about earlier about, you know, ableism having a moral moral dimension. And the idea that, yeah, somehow you've fallen short, or you're bad, or I think think thankfully, we've moved on as a culture. But it really was the Stick It was still it's difficult, because the kindness that I received was huge. And the time the people's time that I received was massive. But at the same time, I really resented having to do it.
Lauren Fenton 1:13:49
It's sort of ridiculous expectations that you put on life or on people in your life. We already talked about it, having a baby, you have all these expectations. And it's learning to let go of those expectations and see them for who they are on and what they're going to be what's much more important and it's taken me a long time to realise is nurturing her who she is and what and helping her to like assert who she is and, and be who she is and enjoying that and having fun and making childhood less about fucking therapy and achieving milestones and much more about her mad sense of humour whenever she faults blaming somebody else. And you know, like,
Emmett de Monterey 1:14:36
and also as you're saying, that's much more to do with interrogating the medical model and the whole point of this podcast and what is normal, let's interrogate what that looks like. And let's, you know, on a case by case child by child, person by person, basis, let's and I love what you said Rina about, like, the way that it kind of does pressure protection I was kind of gradually released for you
Rina Teslica 1:15:03
massively. It's so liberating when you just I think Louis helped, because I think it's just her personality to take her sweet ass time to do anything. So I went in with.. Yeah, she has to walk. And then it's like, yeah, I will walk when I'm four. And when I decide one day to just walk, and I think I had pushed her and I had that whole concept of like, you're gonna have to walk because I know that you can kind of think and now, because she's shown us so many times that I will only do shit when I fucking want to do it. I don't give a fuck how much like therapies, you take me to win how much you you know, I will do it. When I want and Aber and I have just let go. You just gotta go there pace. Just totally let go. And she surprised us last year when she started to feed orally, on like, it just happened with no input from us. Yeah, so now I'm like, I just have no expectations for you at all
Gemma Sherlock 1:16:08
take your foot off the gas
Lauren Fenton 1:16:09
She'll be and do what she wants, when she wants to do it
Emmett de Monterey 1:16:12
Oh how lovely of you to share your stories with me. And it is really nice for me, or one of the reasons I wanted to come on here today is to see the story from your experiences from the other side of the equation, if you like, and I really thank you for telling me telling me stories and sharing that with me. And being such you know, being such brilliant advocates for your children because because you are and, and rather like my parents, you know, it's brilliant to have parents who, as Andrew Solomon says rise to the challenge of having children that they have and enjoying the challenge.
Rina Teslica 1:16:57
Thank you
Lauren Fenton 1:16:58
Ditto. Telling your story. Thank you. It's wonderful and I absolutely loved the book and encourage everybody listening to this podcast go and buy it you don't need to sell it because I'm gonna sell it for you out on the sixth of July,
Emmett de Monterey 1:17:16
6th July yeah from Penguin Viking
Lauren Fenton 1:17:19
right and it's called
Emmett de Monterey 1:17:20
Go the Way your Blood Beats.
Lauren Fenton 1:17:21
Thank you. Go the way your Blood Beats. Beautiful story. But as we always do, we want to end on you telling us what your fucking normal is,
Emmett de Monterey 1:17:32
Right. He's not gonna like this, but it's the truth. My fucking normal although not normal fucking for the homophobes out there, not normal fucking is my husband, my lovely, lovely husband, who we got married last year. And it was very moving to me because I'm very mindful that in this world currently, lots of gay people don't have the opportunity or the or the right to get married. And so it felt quite important for me to do that. And yeah, I just looking at him that day. I just, I was delighted. I was absolutely delighted. And it was something that in my loneliest teenage moments, I never thought I would have access to just that. I was being interviewed the other day, and I said, apart from having written a book, my life is blissfully ordinary. You know, I'm in midlife, and I cherish the ordinariness of my life. The kind of ordinariness that I never imagined I would have, so that's my fucking Normal.
Gemma Sherlock 1:18:45
Your fucking normal is blissful ordinary
Rina Teslica 1:18:48
blissfully ordinary.
Lauren Fenton 1:18:50
I love that. Thank you so much Emmett. It's been so great to meet you properly.
Lauren Fenton 1:18:57
Thank you so much for listening to the bucking normal podcast. We love making this podcast. Yes, we do. 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 1:19:18
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 fucky. Animal 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 1:19:42
So thanks so much for listening all the way to the end. We'll see you next time. Byeee "mwaa" [kissing sound]
Transcribed by https://otter.ai
