
LIFE WITH A FEEDING TUBE: Award-Winning Campaigner Celia Chartres-Aris on Discrimination Because of Her Rare Disability
08/26/23 • 42 min
1 Listener
Imagine what it's like not to be able to eat, not because of a lack of food, but because of a rare disorder that prevents your body from processing it. This is the reality for our guest, Celia Chartres-Aris, living with Loeys-Dietz Syndrome. Celia's condition requires her to be reliant on a feeding tube for nutrition. Her life is a testament to resilience and strength, and she joins us to shed light on her experience, from dealing with verbal abuse to answering inappropriate questions, all while living with a feeding tube.
Our conversation takes a critical turn as we scrutinize how legislation often fails to protect those with disabilities. With Celia's life as a backdrop, we examine poignant examples like the introduction of the Down Syndrome Bill, the care for children, and current access and architecture requirements for public buildings. We focus on the urgent need for inclusive policy making that involves the disabled in the process, underscoring the importance of designing everything right from the outset, with accessibility in mind.
The final part of our discussion turns to the crucial aspect of accessibility and inclusion. Listen as Celia recounts instances where she was denied access due to her disability, and how she uses these moments to educate others. We explore the Access Maturity Model, a tool organizations can use to assess their inclusion and accessibility policies. We conclude our conversation by emphasizing the importance of diversity inclusion, stressing the need for disabled people to be included in design and entrepreneurship roles, and a deep understanding of these critical issues.
#DisabilityRights #Inclusivity #Accessibility
#InclusiveDesign #DisabilityAdvocate #Access2Funding
#Legislation #PublicBuildings #Resilience
#DisabledEntrepreneurs #CeliaChartresAris
#FeedingTubeLife #DiversityandInclusion #GovernmentAdvisory
#DisabilityAwareness #AccessibleSpaces #InclusivePolicy #ForbesFeature #DiscriminationAwareness #AccessDenied
https://www.angelawalkerreports.com/
Imagine what it's like not to be able to eat, not because of a lack of food, but because of a rare disorder that prevents your body from processing it. This is the reality for our guest, Celia Chartres-Aris, living with Loeys-Dietz Syndrome. Celia's condition requires her to be reliant on a feeding tube for nutrition. Her life is a testament to resilience and strength, and she joins us to shed light on her experience, from dealing with verbal abuse to answering inappropriate questions, all while living with a feeding tube.
Our conversation takes a critical turn as we scrutinize how legislation often fails to protect those with disabilities. With Celia's life as a backdrop, we examine poignant examples like the introduction of the Down Syndrome Bill, the care for children, and current access and architecture requirements for public buildings. We focus on the urgent need for inclusive policy making that involves the disabled in the process, underscoring the importance of designing everything right from the outset, with accessibility in mind.
The final part of our discussion turns to the crucial aspect of accessibility and inclusion. Listen as Celia recounts instances where she was denied access due to her disability, and how she uses these moments to educate others. We explore the Access Maturity Model, a tool organizations can use to assess their inclusion and accessibility policies. We conclude our conversation by emphasizing the importance of diversity inclusion, stressing the need for disabled people to be included in design and entrepreneurship roles, and a deep understanding of these critical issues.
#DisabilityRights #Inclusivity #Accessibility
#InclusiveDesign #DisabilityAdvocate #Access2Funding
#Legislation #PublicBuildings #Resilience
#DisabledEntrepreneurs #CeliaChartresAris
#FeedingTubeLife #DiversityandInclusion #GovernmentAdvisory
#DisabilityAwareness #AccessibleSpaces #InclusivePolicy #ForbesFeature #DiscriminationAwareness #AccessDenied
https://www.angelawalkerreports.com/
Previous Episode

UNDERSTANDING DEMENTIA: Shirley Pearce on Coping with Dementia Through Empathy
What if you could better understand the complex world of dementia and discover ways to connect with your loved ones affected by it? In today's episode we meet Shirley Pearce, the CEO and founder of Understanding Dementia. A retired occupational therapist, Shirley's compassion, personal commitment and years of experience have led to the creation of a unique programme that reshapes traditional care approaches by focusing on enhancing the emotional wellbeing of dementia patients.
We discuss the nature of dementia, its devastating effects and the tools offered by Shirley's programme to help for caregivers develop new skills. Shirley's valuable insights extend to real-life scenarios, like managing communication hurdles or finding strange items in the fridge, emphasising the importance of understanding human behaviour when caring for dementia patients. We also delve into her ABC programme, which is designed to minimise frustration and confusion for people with dementia and their families.
This episode is a journey through the often misunderstood landscape of dementia care, filled with hope, compassion, and practical guidance. Whether you're a family member, healthcare professional, or someone dealing with dementia, you're bound to find this conversation both enlightening and empowering. Join us as we shed light on the complex world of dementia and explore how hope can be found after a diagnosis.
angelawalkerreports.com
https://understandingdementia.co.uk/
#DementiaCare #UnderstandingDementia #EmotionalWellBeing #CaregivingSkills #dementia #elderly #elderlypatients #ABCTransition #QualityOfLife #EmpowermentAfterDiagnosis #InnovativeCaregiving #NavigatingChallenges #CompassionateCare #EnlighteningInsights #HopeForDementia #nhs #dementiaawareness
https://www.angelawalkerreports.com/
Next Episode

CHILDLESS MEN: Dr Robin Hadley on the sorrow of men without children
Why do we never talk about involuntary male childlessness? A quarter of men do not have children and for many of them this is not through choice. Join me as I sit down with my guest, Dr. Robin Hadley, academic and author of 'How is a Man Supposed to be a Man?'. We explore male childlessness, the stereotypes that often stifle men's discussions about their yearning for parenthood and their struggles with fertility. With Dr. Hadley's expert insight, we navigate the emotional labyrinth faced by these men and tackle the societal norms that equate virility with fatherhood.
As our conversation unfolds, we turn the spotlight on the evolving perceptions of fatherhood. We delve into the pressures men face when considering paternity leave and the repercussions of the gig economy on their decision. We take a closer look at grandparenthood and its function as a social bridge for children in the absence of their parents. Moreover, we bring into focus the harsh reality of older adults without a support network or children to care for them and the uphill battle they face in society.
Finally, we discuss - the profound psychological impact of male infertility. We rip apart societal misconceptions that exacerbate the stigmas around male childlessness and infertility. Dr. Hadley emphasizes the critical need for therapy and the establishment of safe spaces for men to express their vulnerability. So, tune in as we break barriers, challenge conventional wisdom, and underscore the significance of understanding and empathising with the emotional challenges encountered by childless men.
#MaleChildlessnes #Infertility #ParenthoodStruggles #DrRobinHadley #FatherhoodPerceptions #EmotionalChallenges #MensHealth #Stereotypes #SupportNetworks #TherapyForMen #InvoluntaryChildlessness #FertilityJourney #PaternityLeave #GigEconomyImpact #Grandparenthood #SupportingChildlessMen #SocialNorms #MentalHealthMatters #BreakingStigmas #SafeSpacesForMen #UnderstandingEmotions #ChallengingSocietalExpectations #MaleInfertility #EmpathyMatters #MenTalkParenthood #bbc #bbcnews #gmb #skynews #worldchildlessweek #babies
Regenerate
https://www.angelawalkerreports.com/
Angela Walker In Conversation - Inspirational Interviews, Under-Reported News - LIFE WITH A FEEDING TUBE: Award-Winning Campaigner Celia Chartres-Aris on Discrimination Because of Her Rare Disability
Transcript
Eating is a pleasure most of us take for granted , but for some people , their medical conditions mean their bodies can't process food and they need to get their nutrition through tube feeding . My guest today is on a mission to demystify parental nutrition . She is a disability advocate who shares her experiences on social media . I'm journalist , angela Walker , and in my podcas
If you like this episode you’ll love
Episode Comments
Generate a badge
Get a badge for your website that links back to this episode
<a href="https://goodpods.com/podcasts/angela-walker-in-conversation-inspirational-interviews-under-reported-272140/life-with-a-feeding-tube-award-winning-campaigner-celia-chartres-aris-32814192"> <img src="https://storage.googleapis.com/goodpods-images-bucket/badges/generic-badge-1.svg" alt="listen to life with a feeding tube: award-winning campaigner celia chartres-aris on discrimination because of her rare disability on goodpods" style="width: 225px" /> </a>
Copy