F**king Normal

This week, Rina, Lauren and season one guest Gemma Sherlock, interview trained psychotherapist Emmett de Monterey on his extraordinary life and memoir ‘Go The Way Your Blood Beats.’ 

Diagnosed with Cerebral Palsy at 18 months old, Emmett was raised by loving and liberal parents and yet he grappled for a long time with accepting his own identity. In his early adolescence, these feelings were compounded by the discovery that he was gay, and by becoming a media sensation for ground-breaking gait surgery in the US.

In this heart warming discussion we delve deep into Emmett’s story, into the prejudice he encountered, his route to acceptance and the impact his parents played in helping him to embrace his own identity. Lauren, Rina and Gemma discuss how their own views on disability have changed and Emmett shares why owning and writing his story was so important.

Guest Biography

Emmett de Monterey grew up in South East London in the early 1980’s. When he was eighteen months old he was diagnosed with cerebral palsy which, up till then, was a condition his young, bohemian parents had never heard of. At aged 12, Emmett was selected to undergo a revolutionary gait surgery in America and was the subject of national media attention. The story in the papers was one of ‘cures’, but while the surgery was a success, it wasn’t the ‘miracle’ of the tabloid headlines. Around the same time, Emmett was also realising he was gay, but thought that to be both disabled and queer was impossible, and that his sexuality would always remain theoretical, a secret.

Emmett has recently written a memoir Go the Way Your Blood Beats, a powerful story about finding your place in the world, embracing your identity, and fighting to be seen in a society which would still prefer the disabled to be invisible.

Go the Way Your Blood Beats - Amazon

@PenguinUKBooks

@VikingBooks

Content Warnings

Diagnosis

Traumatic Birth

Surgery

Eating Disorders

Death in Adolescence

References the haemophiliacs contaminated blood scandal (1970s-90s UK)

Resources

Watch Crip Camp: A Disability Revolution | Netflix Official Site

Far from the Tree by Andrew Solomon – review | Health, mind and body books | The Guardian

End the Awkward | Disability charity Scope UK

Visible Hate Campaign | Ending Appearance Related Hate Crime (changingfaces.org.uk)

Emmett refers to 22% of the population experiencing disability. See below for relevant statistics.

Disability facts and figures | Disability charity Scope UK

Disability, England and Wales - Office for National Statistics (ons.gov.uk)

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In this episode, Miriam Elia shares her approach to living with the uncertainty that comes with her son’s mitochondrial and neuro-degenerative condition - Leigh Syndrome. With her characteristically dry wit and wicked laugh, Miriam shares her unusual gung-ho and joyful parenting approach as she beautifully describes the profound impact that Sid’s diagnosis has had on her entire family. With a ridiculous number of references to Legoland (no they are not a sponsor of the show!) and frequent bursts of laughter from Miriam, the group discuss how their children have changed them and how to try and live life in the moment and let go of controlling everything.  

Content Warnings 

Life limiting conditions

Inherited conditions

Diagnosis

Covid 19 

Depression 

Guest Biography 

Miriam Elia is a visual artist, comedian and broadcaster hailing from North London. Her diverse work includes short films, animations, illustrated books, prints, drawings and surreal radio writing.

She is best known for her art book ‘ We go to the gallery,’ in which she illustrated the classic Peter and Jane ladybird book characters grappling with conceptual art.

In 2008, Miriam was nominated for a prestigious Sony Award for her debut BBC Radio 4 sketch show ‘A Series Of Psychotic Episodes’, a surreal comedy series.

She frequently collaborates in writing with brother Ezra Elia, and in 2011 published ‘The Diary Of Edward The Hamster’; the story of a philosophical yet deeply troubled Hamster living and contemplating the meaning of life in the solitary confines of his cage.

In 2012 Miriam wrote and starred in her own comedy mini series for Channel 4’s Random Acts short film strain ‘Survival’, which tells the story of 5 different animals living in and handling the circumstances of modern society in contrasting ways. From a bunny claiming benefits and selling ‘pure’ carrots to get by to a wealthy hipster fox partying her life away in Shoreditch.

March 2023 saw the opening of her first major solo show at the Ujazdowski Centre for Contemporary Art in Warsaw, Poland (24th March – 11th June 2023). The show displays original illustrations and prints from books in the Dung Beetle Learning series ‘We do Lockdown’ and ‘We see the sights’, as well as a series of new Dung Beetle educational wall charts inspired by 1960s classroom displays, depicting ‘The New Normal’ in jolly colourful illustrations.

Learning with Miriam – work by Miriam Elia 

Resource Links 

https://leighnetwork.org.uk/ ran by the amazing Faye Wylie, who has lived with Leighs syndrome most of her life.

www.thelilyfoundation.org.uk

https://www.curemito.org/

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In this episode Lauren and Rina discuss neurodiversity and how we want the world to evolve, with the team behind the play ‘Just be Normal’ - Connor Pearce and sister's Emma and Sophie Jackson. The conversation includes a beautiful monologue performance from the play by Sophie, as well as each guest sharing their own personal experiences and their hopes and wishes for a more accepting and accessible world. 

“Just Be Normal” explores the topics of Autism and neurodiversity. Sophie wrote the play and stars in it alongside her sister Emma. It is inspired by their own lives and personal stories. Written off as the 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’s been living with OCD. 

Connor’s production company Akimbo is behind the play, and as its 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 a tick box after thought. 

Content Warnings 

Diagnosis

Mental health challenges 

Vaginismus

Guest Biographies

Emma is a part-time actor and full-time Mum to 1-year-old Nala. Emma was diagnosed with Autism aged 17, after a difficult period of not being sufficiently catered to at school lead to her dropping out. She has since gone on to star in Just Be Normal, a play inspired by her life, at London's acclaimed Vault Festival.

Sophie is an East London based actor/writer with OCD. Her debut play Just Be Normal came together as a result of her feeling a deficit in real representation of Autistic and neurodivergent women. Sophie starred in Just be Normal alongside her sister Emma at Vault Festival 2023.

Connor is a London-based writer, director and filmmaker impassioned by compelling story-telling and diverse experiences. He was diagnosed with Pure OCD aged twenty-seven, having unknowingly lived with it his whole life.

Resources, links:

Inside our Autistic minds

BBC iPlayer - Inside Our Autistic Minds

PLEASE SUPPORT: #SaveVault campaign https://vaultfestival.com/save-vault/ https://www.givey.com/vault

Following its triumphant return for the first time in three years having battled to survive through cancellations and postponements, VAULT Festival has been dealt the devastating blow of being told by its landlord, The Vaults, that it must find a new home for future festivals as the venue is instead looking at other more commercial projects. This decision leaves VAULT Festival without a home for 2024 and beyond and poses a significant threat to our survival and to the wider creative industry.

Over the past 11 years, VAULT Festival has delivered over 3,000 bold and brilliant shows to over 400,000 audience members. The festival is recognised for being vitally important to the live performance landscape of the UK, has helped launch the careers of thousands of artists from underrepresented backgrounds, who otherwise may not have had access to creative opportunities, and has had a significant positive impact on local businesses.

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In this episode, Rina and Lauren talk with Jazz Manley about her experience of searching for answers and a diagnosis for her son Max. Jazz is candid, being open about her own vulnerability and mental health struggles. She discusses her son’s difficult birth and the challenges she faced when he was young and her concerns surrounding her son were not shared by others. We also discuss how Jazz came to discover that she herself was autistic. Jazz provides a raw, honest, but also funny and heart-warming account of coming through this difficult period in her family's life.     

This episode contains reference to and details around attempted suicide. It is important to stress that we are not mental health experts, but we have spoken to Jazz outside of the podcast to ensure that she is able to access more support. If you are affected by the content or concerned about anyone you know, please reach out for help. Suicide is preventable, and support is available. We have included some links below. 

Contact Us | Samaritans 

Where to get urgent help for mental health - NHS (www.nhs.uk)

Useful contacts - helping someone who feels suicidal - Mind

Content Warnings

Suicide 

Traumatic birth stories 

Diagnosis

Guest Biography

Jazz is 28 years old and lives in Cheshire with partner, Ryan and their 5 year old son, Max. Max is suspected to have a rare, (as yet) undiagnosed genetic condition which has culminated in autism, global development delay, hypermobility, low muscle tone, microcephaly, dyspraxia and febrile convulsions. Jazz is also autistic, having been diagnosed at the age of 24.

Jazz has an undergraduate degree in Law and has worked as a paralegal and a police officer. Due to Max’s growing needs, she is now self-employed as an accounts assistant and recently set up her own payroll company with her best friend, another special needs parent. Jazz’s biggest passions in life (besides her family) are music, books and writing. When Jazz finds an unusual moment for herself you will find her playing guitar, some sport, reading Harry Potter or Game of Thrones books or blogging on her social media account, Autiemum & Max.

Instagram - @autiemumandmax

Facebook – Autiemum & Max

TikTok - @autiemumandmax

Resource Links 

What is autism? - NHS (www.nhs.uk)

Microcephaly (who.int)

What Is Global Development Delay? Find Out More | Mencap

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In the first episode of our new series Lauren and Rina speak to performer and writer Bryony Kimmings. Bryony's son Frank is autistic and two years ago, she was also diagnosed with ADHD. They talk about Bryony’s parenting approach, discovering your own neurodiversity and how to balance a neurodiverse family with sometimes conflicting needs and wants. With her characteristic candour and wicked humour, Bryony describes how much she has learnt about herself and in doing so, how she has become a better parent to Frank as she drives to create their own neurodivergent utopia in their crumbling old country home. 

Content Warnings 

Drug taking and alcohol misuse 

Diagnosis

Guest Biography 

Bryony Kimmings is a playwright, performer, documentary maker and screen writer from the UK. She is inspired by female stories, social taboos and dismantling power structures. Kimmings’ work is brutally honest, very funny and often a bit geeky and dangerous.    

Bryony’s stage work includes her plays (as writer and performer): Sex Idiot, 7 Day Drunk, Credible Likeable Superstar Role Model, Fake it til’ you make it and I’m a Phoenix, Bitch.    

Her TV and film work includes the documentaries The Sex Clinic (C4) and Opera Mums (BBC) and the feature film Last Christmas, which Bryony co wrote with Emma Thompson.   

Bryony is working class and loud mouthed; a deep thinker, world fixer, activist and trouble maker all wrapped into one. She likes adapting and reimagining books, creating 3D female characters. She enjoys writing about class, gender and disability. Having toured all over the world with her shows (created about real events in her life) from the National Theatre to the Sydney Opera House, Bryony is now focusing on writing for film and TV.  

Bryony is also an ADHD mother to an ASC son of 7 years. She lives in the country, trying to homestead and get off grid with varying degrees of success. Nature and food brings Bryony joy, as well as cracking cinema and splashing in water with her son. 

www.Bryonykimmings.com

Resource links

Social model of disability | Disability charity Scope UK

A Radical Guide for Women with ADHD: Embrace Neurodiversity, Live Boldly, and Break Through Barriers - Sari Solden

https://www.sarisolden.com/publications

Bryony recommends....

How to raise a happy autistic child, by Jessie Hewitson

The secret to… raising a happy autistic child | Parents and parenting | The Guardian

ADDitude magazine

ADDitude - ADD & ADHD Symptom Tests, Signs, Treatment, Support (additudemag.com)

"I follow Instagram accounts of autistic teenagers, as an insight on how to support younger children; Write an access document for friends/family, a 'how-to' for supporting your kid;

Be wary of the online reading you do on ASC and check charities actually have ASC people on their staff and board, that it comes from thoughts in the community; I try my best not to watch or support films or tv where disabled people are played by non disabled actors, called 'cripping up'. Its offensive and reductive."

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We are back! A quick hello from your hosts, Lauren and Rina to let you know that Series 2 will be coming out very soon. And what an interesting array of guests we have in store for you. Starting with performer and writer Bryony Kimmings early next week.

We also have an ask for our listeners. Do you have any questions for psychotherapist, Charlotte Fox Webber, who we will be interviewing soon on various themes that come up when we talk to parents of disabled children. We will talk trauma and different emotions and would love to also put some listeners questions directly to Charlotte.

Where you can reach us:

[email protected]

Website - www.fkingnormalpodcast.com 

Instagram - https://www.instagram.com/fkingnormal_podcast/ 

Facebook - https://www.facebook.com/fkingnormalpodcast

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It’s our series 1 finale and time to turn the tables on our hosts, as Lauren and Rina are interviewed by our first ever podcast guest, the wonderful Genevieve. They discuss their experiences of pregnancy, birth and diagnosis with some key moments of acceptance and internal and external influences that helped. From language to being kinder to oneself, we discuss modifying parenting expectations and learning to not give a shit about what others’ think.

For our 3 hosts today (and most of the podcast team), acceptance often creeps in, over time. Of course, there are setbacks along the way, with an array of examples and themes discussed. As parents of disabled children, some days are hard and some days are great. Over time, Lauren, Rina and Gen have learned acceptance and the peace that goes with it, which is invaluable in helping get through shittier times and giving you perspective. 

Content Warnings

Diagnoses Stories

Possible Death in Early Infancy 

Misdiagnosis

Mental Health

Disability & SEN Language

Birth Stories

Neonatal Intensive Care Unit Stories

Resource Links 

NHS Tracheostomy

A tracheostomy is an opening created at the front of the neck so a tube can be inserted into the windpipe (trachea) to help you breathe.

Pierre Robin Sequence - Health Research Authority

Pierre Robin Sequence (PRS) is a condition present from birth with three main features: a small lower jaw (micrognathia), backward-positioned tongue (glossoptosis), and defect of the roof of the mouth (cleft palate). Together, these abnormalities can cause airway obstruction and breathing or feeding difficulties.

Chromosome 18q -

https://www.chromosome18.org/18q/distal-18q/

https://www.rarechromo.org

Noonan Syndrome -

https://www.noonansyndrome.org.uk

As Gen mentions at the start of the episode, Lauren is running the London Marathon to raise money for Great Ormond Street Hospital - If you can afford to, and want to make a donation, here is her just giving page:

Lauren Fenton is fundraising for Great Ormond Street Hospital Children's Charity (justgiving.com)

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In Episode 6, we discuss couple relationships, with Clare and George, who are parents to Ada and Ivo, about the impact that having a disabled child has on their relationship. Both the highs and lows.

An eye-opening, heart-warming and hilarious account of this fabulous couple’s story. Covering everything from finding out you’re pregnant after the second date, moving in together after three months, to being told your child’s autism diagnosis, whilst pregnant with your second child. 

Clare talks candidly about her struggles with mental health and George gives thought-provoking insight into the perspective of an SEN Dad. The duo discuss how their relationship has changed and developed over ten years, as well as the understanding and balance they have now found through communication, respect, and an overall loving family unit. 

Content Warnings

Postnatal Depression

References to sex, alcohol and drugs 

Diagnosis

Guest Biography

Clare and George are parents to 8 year old Ada Bear and 4 year old Ivo Sparrow.

Clare, a Scouser with a sort of Kiwi / London accent works in music management and George, a born and bred Londoner works in digital marketing. They met when both living in East London and moved to North London together when pregnant with Ada Bear. 

Resource Links 

Paddy McGuinness and his wife Christine have three children who have been diagnosed with autism. In this documentary, they meet other parents, experts and people on the autism spectrum.

https://www.bbc.co.uk/iplayer/episode/m00122vl/paddy-and-christine-mcguinness-our-family-and-autism

National Autistic Society: 

https://www.autism.org.uk/

Clare's 'mother of all lists' 

https://motherofalllists.com/2018/08/31/awesome-ada-autism/

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We want this podcast to be about connection and building community. So please get in touch with your feedback and ideas. Please tell us what you want to hear from us... Or answer the question we have posed: "What's your F**king Normal?" and share with us any unconventional, unique, beautiful or humorous examples of your daily parenting experience.

Where you can reach us:

[email protected]

Website - www.fkingnormalpodcast.com 

Instagram - https://www.instagram.com/fkingnormal_podcast/ 

Facebook - https://www.facebook.com/fkingnormalpodcast

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Systems of support aren’t always automatically in place for disabled children and their families, and the world simply has not been designed for disabled people. As parents of disabled children, we have to champion, persuade and shout loudly on our kids behalf. 

Our interview with Caroline discusses the battles with getting a diagnosis for her daughter Dottie, the struggles she had to persuade the right people to listen and the impact this had on her mental health. We talk about the challenging process of getting an Educational Health Care Plan, which most families experience and how this inspired Caroline to use her professional experience to support other parents going through the process. We talk a lot about the journey of acceptance and how even though Dottie is largely nonverbal, she is able to advocate for herself and communicate her wants and needs extremely successfully, often getting exactly what she wants. 

Trigger and Content Warnings

Death in early infancy

Misdiagnosis

Suicide

Struggles with mental health

Postnatal Depression

Guest Biography

Caroline lives in Surrey with her husband Matt and two children – Dottie (5) and Roo (3). Caroline has 20 years’ experience as a lawyer and has spent the last 10 years as Legal Director at Virgin Media O2 (previously with Virgin Media). Caroline is also Trustee of Support SEND Kids, a charity founded by lawyers to aid families in securing educational support for children with special educational needs and disabilities. Caroline’s current mid-life crisis is taking up the drums, and she can be found in her spare time re-living her teenage years rocking out to grunge music. 

Resource Links 

Support SEN Kids - charity connecting SEND families, professionals & lawyers https://supportsendkids.org/

SWAN UK: a great resource for families of children with undiagnosed genetic conditions https://www.undiagnosed.org.uk/

Source for statistic cited 95% EHCP appeals succeed: Gov.uk Tribunal Statistics:

https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2020

https://www.gov.uk/government/statistics/tribunal-statistics-quarterly-july-to-september-2021

The Social Model of Disability

https://www.scope.org.uk/about-us/social-model-of-disability/

https://en.wikipedia.org/wiki/Social_model_of_disability

The social model of disability identifies systemic barriers, derogatory attitudes, and social exclusion (intentional or inadvertent), which make it difficult or impossible for disabled people to attain their valued functioning’s. The social model of disability diverges from the dominant medical model of disability, which is a functional analysis of the body as a machine to be fixed in order to conform with normative values. While physical, sensory, intellectual, or psychological variations may cause individual functional limitation, these do not necessarily have to lead to disability unless society fails to take account of and include people intentionally with respect to their individual needs.

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