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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

In which I get a bit political

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… Read more

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

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… Read more

Invisibilia: The problem with the solution

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┬áseason.… Read more

Eva’s things

Eva’s things

I did some clearing today. The day after Eva died, we put all her clothes in bags and cleared her room out so it could be used for her when she came back from the funeral home. Mercifully, I didn’t have to do this task at the time. Ess and… 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

Learning how to grieve

I’ve been thinking a lot about what grief looks like for different people. I’ve been thinking about when you see death on the news in foreign countries and the people, mothers, fathers, sisters, cry with their whole bodies. They throw themselves on the ground and wail and scream. Their grief… Read more

Thank you and I miss you and I love you

I’m scattering Eva’s ashes this weekend. I’ve arranged for flower petals to scatter with her and I’ve asked the people who will be there to say a few words for Eva. Eva’s foster parents will be there. My parents. My sister and her partner, Eva’s aunty and uncle, will also… Read more

Counting backwards

Counting backwards

Holidays seem to make me count backwards. Where was I last year? The year before? I did this before Eva, but now it feels even more pressing. Easter is no different. Last year on Easter I drove to the Hawkes Bay for a holiday with friends. The holiday coincided with… Read more

My next guest – Rachel Callander

My next guest – Rachel Callander

Earlier tonight I was angry about the way a mother was having to get signatures on a petition in order to get her special needs child a heart transplant. I was railing against a belief in society that someone with developmental delays is someone deemed less worthy than “normal” people.… Read more

Sign the petition – give Lily a new heart

Sign the petition – give Lily a new heart

I was listening to some people talk about language the other day. They were discussing racial slurs and slurs aimed at the special needs community. They seemed to agree that racial slurs were not ok under any circumstances, but when it came to special needs slurs (we all know which… Read more