“I’m blind, not stupid. Ask me.”

Those were Carly’s words when adults spoke about her instead of speaking directly to her.

In Part 2 of my conversation with Jill Thompson, we hear much more about Carly herself — an intelligent, determined and fiercely independent little girl living with an exceptionally rare genetic condition.

Jill recalls the relief of finally finding a school that recognised Carly’s academic ability rather than defining her by her disability, and the enormous difference made by one medical professional who simply believed the family and kept searching for answers.

Tragically, after years of uncertainty and changing diagnoses, the final diagnosis arrived only one month before Carly died.

But this episode is not simply about diagnosis or bereavement.

It is also about dignity, autonomy and the assumptions we make about disabled people.

Carly would not tolerate adults speaking to her mother when the question was about her. Her response was beautifully direct:

“I’m blind, not stupid. Ask me.”

Jill also talks openly about the realities people often fail to see when caring for a disabled child, and why she was determined to encourage Carly to do as much for herself as possible — even when other parents sometimes misunderstood her approach.

At only three and a half years old, Carly had even found her own way of adapting to deteriorating sight, using her doll’s pushchair to help navigate the world around her.

In this episode we discuss:

• finding a school that finally recognised Carly’s abilities
• years of uncertainty and changing diagnoses
• receiving the final diagnosis far too late
• what changed when one professional believed Jill and her family
• why disabled people should be spoken to, not spoken about
• the unseen reality of caring for a disabled child
• supporting independence without removing dignity
• the intelligence, personality and determination behind Carly’s disability

Content note: This episode discusses childhood illness, disability and the death of a child.

🎙️ Blether with Barberra
Hosted by Brian Caldwell-White

If this conversation resonates with you, please follow the podcast and share the episode with somebody who may need to hear it.

In this episode of Blether with Barberra, Brian continues his conversation with writer, speaker, photographer and paraeducator Michelle Steiner about hidden disability, success and identity.

Michelle discusses a common assumption she encounters: because she has achieved things in her life, people sometimes believe she must have “overcome” her learning disability.

But success and disability are not opposites.

Michelle still encounters everyday tasks she has to approach differently, while also building a life around the things she does extremely well.

The conversation explores self-worth, self-advocacy, young people with disabilities, asking for help, accepting disability as part of identity and why visible achievement should not be mistaken for the disappearance of support needs or challenges.

What if success does not prove somebody overcame their disability — but shows what they built while living with it?

In this episode of Blether with Barberra, Brian continues his conversation with Lawrence C. Harris to explore self-worth, validation, journaling and the emotional gaps people often try to fill through behaviour, relationships, distraction or approval.

Lawrence speaks honestly about trying to fill an internal void with external validation, before learning to reflect, journal and ask what was actually good for him — not just what felt good in the moment.

The conversation also looks at young people, poor decision-making, pain, fear, survival behaviour, neurodivergence, addiction patterns and why people may act out when they do not yet have the words to explain what they are carrying.

This is a reflective, educational conversation about understanding behaviour differently.

Free journaling resource:

https://speakerhub.com/cta/h3g7ny

In this episode of Blether with Barberra, Brian speaks again with Dr Nikhit Anilbhai about continuous vital-sign monitoring, patient safety, real-time data and what happens when healthcare systems only see snapshots instead of the full pattern.

Dr Nikhit discusses his move from clinician to founder, the challenge of building medical technology, and why better data could help clinicians understand changes in patients earlier.

This is a thoughtful conversation about HealthTech, innovation, patient care, monitoring, risk and whether healthcare needs better tools to see what is happening between routine checks.

In this episode of Blether with Barberra, Brian speaks again with Heather Gibson about pets, purpose, trauma, emotional support and the role animals can play in helping people reconnect with life.

Brian reflects on how his rescue dog Barbara gave him purpose during a difficult period, while Heather shares examples of cats, service dogs, pressure therapy and the emotional power of having another living being waiting for you at home.

A sensitive and thoughtful conversation about animals as emotional first responders, responsible ownership, service dogs, emotional regulation, trauma recovery and why the right animal-human relationship can be deeply powerful.

This episode includes references to trauma and suicidal thoughts.

In this episode of Blether with Barberra, Brian speaks with Alexey Dmitriyev about what happens when healthcare support becomes transactional.

Alexey discusses patient advocacy, support networks, case management, healthcare silos, insurance systems, time pressure and why people can still feel unsupported even when multiple services are technically involved.

This conversation explores the difference between coordination and true support, why patients are often left chasing paperwork and appointments themselves, and why slowing down, listening and giving people clarity matters.

A thoughtful conversation about healthcare, dignity, patient voice and what it means to be treated as a person rather than a task.

In this episode of Blether with Barberra, Brian speaks with Jill Thompson about her daughter Carly, the signs Jill noticed when Carly was still a baby, and the long struggle to get diagnosis, recognition, help and support.

Jill shares how she knew from around six months that something was not right, how she was dismissed and made to feel like the problem, and how life became a battle across healthcare and education systems.

This is a sensitive conversation about parental instinct, rare childhood conditions, disability, diagnosis, family pressure and what happens when parents are not believed.

In this episode of Blether with Barberra, Brian is joined again by Paul Lagerstedt for a conversation about drinking culture, alcohol-related discomfort, moderation, intention and why different drinks can affect people in different ways.

Paul challenges the common idea that feeling rough after drinking is always simply about dehydration, and explains why he became interested in what is actually inside alcoholic drinks — including fermentation by-products and trace compounds such as histamines, sulphites, tannins and acetaldehyde.

Brian and Paul also explore conscious drinking versus habitual drinking, the culture of accepting discomfort as “the price you pay”, and why pausing before the first sip may change the ritual around alcohol.

Listener resource discussed in this episode:

[INSERT YOUR PERSONALISED ALKAA AFFILIATE LINK]

Get 10% discount using the link above.

Affiliate disclosure: Brian may earn a commission if listeners buy through this link, at no extra cost to them.

ALKAA is a patented, in-glass sachet designed to reduce trace compounds in alcoholic beverages before you drink them.

ALKAA treats the drink, not the body. Nothing is ingested and the taste of the drink does not change.

Adults only. Not medical advice. Alcohol still carries risks. This does not make alcohol healthy, safe or risk-free.