Disability as a unique demonstration of diversity – not misery

By on February 14, 2017

A woman kills her 20 year old daughter and the public’s response is to call it a mercy killing. Donella Knox murdered her 20 year old daughter Ruby, who had severe Autism spectrum disorder and intellectual disability. The Herald reported that Ruby had a number of associated conditions in addition to this. “She also suffered Read More...


Episode 19: Ellie and Beth – life with LBSL

By on February 1, 2017

When Ellie and Mike found out their daughter, Ellie, had a rare form of leukodystrophy called leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation, or LBSL for short, they were devastated. LBSL is a rare genetic disorder that does not allow those afflicted with it to produce a protein essential for production of Read More...

In which I get a bit political

By on November 20, 2016

I live in NZ, roughly 8,700 miles from Washington DC. So I have refrained from saying much about the recent election. I don’t want voice my opinion and have it feel to Americans as if I am judging them, or speaking out of turn. This isn’t my President and I didn’t get to vote. Instead Read More...


Episode 15: Frankie and Carrie – living with Mowat Wilson and West Syndromes

By on November 1, 2016

Episode 15 Transcript When Carrie Avila-Mooney first got in touch with me, she said was a listener of the podcast and that she used the podcast as a kind of therapy for herself. She said in her toughest moments she had thought about what would she say if it was her episode, how would she Read More...


Can I be a feminist and a special needs advocate at the same time?

By on October 13, 2016

Two days ago I wrote a piece for The Spinoff Parents. I had just seen an article about Sally Phillip’s documentary “A World Without Down Syndrome”. In the Guardian article she discusses her concerns over making the non invasive screening tests for Down Syndrome available through the NHS. After reading the article I read another Read More...


Episode 12: Ali and Angela – living with FOP

By on September 1, 2016

There’s a certain belief in the special needs world that it’s wrong to want to change your child. While I agree that accepting your child’s condition is an important step, I don’t agree that every special needs parent should be happy with that diagnosis.   This next episode features a story where I don’t think Read More...


Invisibilia: The problem with the solution

By on July 4, 2016

Invisibilia is one of those podcasts which never fails to impress me. Every episode is beautiful, crafted, intelligent and interesting. Every episode leaves you thinking about some aspect of the world in a new way. This episode was no exception. In fact, it may be my favourite episode from either season. In it, host Lulu Miller Read More...



Episode 09: Vivian and Meghan – living with Dravet Syndrome

By on May 19, 2016

Meghan and her husband Brian never thought they would be moving almost 2,000 miles across the United States for their daughter to be treated with medical marijuana. But when their baby daughter, Vivian started having seizures due to Dravet Syndrome, and standard pharmaceuticals weren’t working, that’s exactly what they had to. This episode looks at the Read More...


Episode 08: Stacey and Thomas

By on May 2, 2016

[podcast src=”https://html5-player.libsyn.com/embed/episode/id/4336018/height/360/width/480/theme/standard/autoplay/no/autonext/no/thumbnail/yes/preload/no/no_addthis/no/direction/forward/” height=”360″ width=”480″] This next episode is only the second time I have been able to interview a family in person. I drove up to Warkworth, NZ to meet and talk to Stacey Dodd and her son Thomas. Stacey and her husband, Joe, are the parents to Thomas. Thomas is an adorable toddler with Read More...