Raising Awareness

Why I do what I do

Why I do what I do

Over the year I’ve been actively following, listening to, and engaging with as many disability self advocates as I can. I’m aware of my abled position of privilege as an ally, and I’m trying to use the right terminology, and pass the mic, and generally just nott fuck it up.… Read more

#Notspecialneeds

#Notspecialneeds

In the world of social justice, language is important. I consider myself fairly woke, or if I’m honest, in a continuous process of waking up, and almost daily I learn something about the language I’m using in reference to disability, mental health and ableism. I thought I had the disability… Read more

Rare Disease Day – my speech

Rare Disease Day – my speech

Last week I gave a speech for the New Zealand Organisation for Rare Diseases on Rare Disease Day. It was just 3 days after Eva’s anniversary and I was a bit worried about how I would cope. I managed to get through till the last paragraph before I cried, so… Read more

Disability as a unique demonstration of diversity – not misery

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… Read more

Dear Mamas podcast with guest, The One in a Million Baby

Before Christmas I got together with two fantastic women, Emily Writes and Holly Walker, on their podcast Dear Mamas which features on The Spinoff to talk about what it’s like to be a parent when someone in the family has chronic illness, medical needs or disability. We discussed Eva and… Read more

Rare Disease Day

Today I met with someone from The New Zealand Organisation for Rare Disorders, NZORD, to talk about Rare Disease Day in February next year. Rare Disease Day is an annual day at the end of February that is celebrated internationally. NZORD is a space for patients, family, friends, clinicians and researchers… Read more

Parents sue over birth defect – can we blame them?

A New Zealand couple living in Australia are suing the medical professionals who allegedly failed to identify the condition for $2.5 million in damages. Their daughter, Aria, who is now two years old was diagnosed with Aicardi Syndrome after an MRI scan revealed the condition. Aria has impaired vision, hearing loss, scoliosis,… Read more

Radio NZ Interview

I did this today. I went on Radio NZ and talked about the podcast live on air. I talked about Eva, about parenting about relationships. I was nervous, but it was a fantastic experience. Thank you to RNZ for having me! Read more

We are a top resource for Special needs families!

I got a lovely email from Total Pediatric Therapy that The One in a Million Baby has been named in their list of best resources for parents of children with special needs. This just made my day. This is exactly why I’ve kept writing and why I started the podcast. Read more

Ms. Harrari, is it you that gets to define quailty of life?

On August 6, The Sydney Morning Herald published a story entitled “Parenting an intellectually disabled child: life forever on duty” about Alex Brown and his mother Vanessa. Alex is a 22 year old man who has Sotos syndrome. He is non verbal and has an intellectual disability. He spends week days… Read more

We can’t just condemn

Satoshi Uematsu, 26, killed 19 people and injured another 26 in a centre for disabled people near Tokyo, Japan, this week. He did so under the premise that he wanted “to rid the world of disabled people”. In February he sent a letter to a politician outlining his plan. He… Read more

Feature in the SOFT UK newsletter

Feature in the SOFT UK newsletter

A few weeks ago I was contacted by a representative from SOFT UK, which is a charity that provides information and support to families affected by trisomy 13 (Patau’s syndrome), trisomy 18 (Edwards’ syndrome) and related conditions. They provide support through the many stages families may find themselves in from… Read more

Words matter

In the New Zealand media, a city mayor recently came forward admitting he had been wrong. He said he had been dismissive of the needs of Maori. He called himself a recovering racist. He asked for the people of New Zealand to think about their own actions. Andrew Judd did something… Read more

Let’s show her what it really looks like

Since posting my letter to Education Minister Hekia Parata, I have had a brain wave. Someone mentioned I should start a petition and I like that idea, but then I got another comment. A mother told me about her two kids who both have special and extra needs. She said… Read more

An open letter to Hekia Parata

Dear Ms. Parata, You’re reviewing and overhauling the special needs education system right now. You’ve said you won’t be increasing the $590 million budget at this time, and instead will be focusing on efficiency and simplification. If you were a real estate agent that’s the equivalent of calling a tiny,… Read more

Better late than never – the next episode is almost here

The next episode of the podcast is almost here. My goal of releasing each month on the first of the month sort of flew out the window when I spent seven weeks in the USA and got back right before the February issue was due to be published. I’m crawling… Read more

We are all different

We are all different

There’s this strange dichotomy in the world of special needs. There’s the parent on the one hand who says, “I love my child and wouldn’t change a thing about them”. And then there’s the relieved mother who gets a 12 week pregnancy scan of her second child, after having a… Read more

The City that never sleeps

The City that never sleeps

They say NYC is the city that never sleeps. I don’t know that I’ve been making the most of that aspect of the city, but it did make me think of other things. This city is so big. There are so many people in a relatively small area. Buildings loom… Read more

That old chestnut 

I was reading a special needs mothers’ facebook page today and had to catch my breath for a minute. There was a comment on there  in reaction to a blog post that I felt so strongly about. It wasn’t ableist, or offensive. It didn’t use language that offends in the… Read more

Heart Stoppers

Yesterday students and teachers at my school climbed into kids swimming pools full of icy water as part of the Heart Stopper Challenge which raises money for the Heart Kids NZ. Before Eva was born they spotted a hole in her heart. An atrial septal defect, or ASD, which turned… Read more

Eva spreads awareness

Yesterday an old classmate from journalism school interviewed me about Eva for The Dominion Post newspaper. He got in touch after seeing her death notice in the paper over the weekend and having a look at the blog. He wanted to do a story on the gutsy awesome kid that Eva… Read more