Receiving an award like being part of the Attitude Hall of Fame gets you thinking. I’ve been reflecting on where I got my attitude to inclusion and why it is so pivotal to us as a caring, kind society. Yes I am going refer to our PM’s word ‘kind’ – because I think it reflects who we can be as a nation.
I grew up in Otahuhu or as we referred to it back in the day – Otahu. It was ‘blue collar’ suburb and my father worked in the railways.
We lived in the heart of the community. It was a booming suburb. Every day Gavin Wallace walked past our place to go to work. He was a man in his 40s I suppose, his whanau lived in the street as well and he worked in the bakery at the back of the shops. Like the rest of us he went to church, hung out with the rellies and worked hard. He always said hello but he seemed to have something wrong with his speech. I remember asking my mother what the problem was and she said that she thought he had something wrong with his palate. So that was Gavin.
When Trav was born and we were told he had Down syndrome I said to my mother that I had never known anyone with Down syndrome before and she replied – yes you did – you knew Gavin. I replied but you never said he had Down syndrome. Why should I she replied – he was Gavin who lived in our street and was part of the community. Lesson learnt. You do NOT need to label anyone in order for them to be included in your community and in society.
Being part of a community as a right is critical. If we can change attitudes one home at a time, one street at a time, one school at a time – we are well on our way to being a sincerely kind society.
I do much of my work as a volunteer and like many parents here – I am a survivor. I have survived despite the systems I’ve had to combat – either on Trav’s behalf or on behalf of other parents. I have survived 38 years of cruel policies, indifferent policies, ignorant bureaucrats and legislation that set a disabled person outside what was considered the norm in society. Those here who know me well will understand that I did not accept this exclusion. I got fired up, rolled up my sleeves and tackled the tasks – along with many many others to fight these injustices. You can’t fight social injustices on your own.
"We are not there whilst parents still have their disabled child rejected from enrolling at their local school."
A lesson I learnt very early on was that many voices saying the same thing forces people in power to change tack. You never go alone. So we’ve written to politicians, marched, argued, gone to the media, written in many publications, held public meetings joined far more committees than is healthy for any individual – and we changed how things were done, together. And we will continue to do so. There have been many wins, but they all come at a cost. I am proud to say I am a survivor.
I have survived 15 Ministers of Education – since Merv Wellington – I am still here.
I have survived 16 Ministers of Health – I am still here.
And when, for these awards, I was asked about my time as an advocate, writer, speaker – the question was ‘Colleen, are we there yet?’ I have to say – emphatically NO – we are not there yet.
We are not there whilst parents still have their disabled child rejected from enrolling at their local school.
We are not there yet when we have parents of a 41 year old man tell me that they are too exhausted to go through the hurdles of looking for a place for their son to live independently.
We are not there yet when fathers stand in front of the Minister of Housing at a public meeting and tell him that they and their family with a disabled child are homeless.
We are not there yet when a very disabled child who cannot verbally communicate is picked up by Oranga Tamariki and taken to an unknown carer without being able to take her favourite toy or cuddly rug from home with her. Three years later her special rabbit waits for her in her bedroom at home. This haunts me.
We are not there yet when families with disabled children do not get the Child Disability Allowance because they don’t know it exists – often from the poorest of families.
We are not there yet when we build homes that are not accessible – where are we supposed to live in our communities?
We aren’t there yet when we build homes that that don’t have toilets downstairs. We may not want to live in them but we certainly want to visit our friends who do.
We are not there yet when the policy for who should advise the government on the Disability Action Plan excludes a parent or carer representative of sometimes very disabled people who cannot speak for themselves. Where then does our disability mantra ‘nothing about us without us’ fit, when an important voice is left out?
So there is much to be done.
If we want to endorse the key outcome of the NZ Disability Strategy – New Zealand is a non-disabling society – a place where disabled people have an equal opportunity to achieve their goals and aspirations – then we all need to come together.
We cannot point the finger at anyone in particular – not at politicians, not at bureaucrats or organisations, not at families – no single person is at fault here – we can all do things differently, we can all work together.
"We can start by asking ourselves two sincere simple questions."
Is this a kind thing to do? Would I like it done to me or my whanau?
And we can do this – together!
Thank you all very much. This is a very special award. Thank you.