“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

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