Research

Two years ago, in 2018, I got involved in a project to make Wellington more accessible. We worked on things like what’s wrong, there are 450,000 people who live in New Zealand with a disability, so that’s one in four people in New Zealand who have a disability. I looked into this, and I was really shocked, and I couldn’t believe it; it really impacted me to realise that the number of people with disabilities was really high and that the government doesn’t do enough for these people.

Disability charter, we need the same sort of thing for other communities. NZ signed up in 2008, but NZ has made some improvements in education, but in other areas we’re going back. We’re going back in housing. Only 0.8% of housing is modified housing [modified for people with disabilities]. That’s quite remarkable. It’s down to this cost thing. Shouldn’t that be an investment?

Equitable access to work, housing, public transport - so we would be more visible and normalised [disability related]

Even if they have the knowledge they sometimes don’t want to use it. The Government has web standards. There has been rules that are not obligatory but they just don’t adhere to them... people just don’t care about accessibility. People often will just not bother. You ask is this accessible and most people just think accessible means that it is just there.

I’ve been working, I’m a community support worker. I usually work with people with intellectual and other disabilities. Make sure they can access the community, so that they’re not excluded from society.

I remember when our eldest daughter, she’s a dancer and she danced with a group of disabled people, that was my first experience of talking with people who had disabilities. Because I grew at a time when anyone with a disability was put somewhere else. And I grew up at a time when there weren’t many cultures in NZ either. I do feel disadvantaged, because I haven’t grown up in a diverse culture and I’m aware of it more now. And I want to learn, and I want to be comfortable.

I would like to see, almost back to the point of training in school, some media campaign. How to talk to, I don’t know, it’s almost dumbing it down. How to talk about deaf, because they don’t see it as a disability. We’ve signed up to the disability charter. Sheltered workshops like that, because they get lots of money [ie by paying people with disabilities much lower than minimum wage]. That would never [?].

Change of attitude and understanding of disability.

I am a huge fan of disabled group models - the medical disability models are very different to the social and environmental models. Like even if the medical community can be more accepting of it, society won't be so willing. So that is why I always feel like I am not the problem but the system. No person is born wrong or broken but it is the society who looks at us that way. If we are the ones who design the world, why not design it in a way that works for us (disabled) too.

Sometimes people don’t understand what I’m saying, they’re controlling funding decisions. Government funding, crown entities. That’s a lot of people at big decision-making tables, that don’t have lived experience. I do find it more difficult that there’s people making decisions that don’t have the right information [about disability].

It’s about the need for people to be more understanding. People are aware that disabled are in our communities, but yet non-disabled people are not responsive to us to a large extent. Comes across every day, children not being able to be enrolled at their school, getting jobs. It’s about how society is responsive and moves to one that is disabling to non-disabled.

I kind of understand that structures and systems take a truckload of effort to change them. I’ve been protesting all sorts of advocacy for disability sector so 35 yrs about now. I'm tired. And change still hasn’t come. And were still about as invisible as we were about 35 years ago.

Service providers have commoditised us. $1.4B Ministry of Health funds mainly go to service providers. Disabled people need to be in charge of their money.

Sometimes even in some of my own work. External meetings, people working in the sector [disability] that don’t have enough hands on or life experience in it. I have a lot of experience in it.

I am a huge fan of disabled group models - the medical disability models are very different to the social and environmental models. Like even if the medical community can be more accepting of it, society won't be so willing. So that is why I always feel like I am not the problem but the system. No person is born wrong or broken but it is the society who looks at us that way. If we are the ones who design the world, why not design it in a way that works for us (disabled) too.

Equal and fair representation. Being included in all forms of decision making. [disability related]

ALWAYS include disabled people in design of infrastructure - they pay for it too, also tangata whenua need to be included every time, not just when its convenient.

Groups for epilepsy, autism, fetal alcohol syndrome, Tourette’s, all of us —we all need to band together as a neurodiversity organisation. We need to do this but where are we going to get funding? Where are we going get the support for bringing us together?

The corporate world tends to support child cancer, which is really important, but disorders like Tourette’s will never get corporate support.

It would have helped to have financial support for physio and chiropractors and all the medical needs. For all staff and students at schools — these kids are not intellectually disabled, they are very bright, but at school they are trying to suppress their tics so hard, that they can’t even hear what’s been asked of them. [Tourette's related]

What is neurotypical? The fact is we need to label it [xxx] It is being medicalised. Years ago those people were just quirky and nerdy and now there's a big book of diagnoses. We’re in a state of de evolution.[xxx] I think we've spoken to that today. I like that point about the decision making and what the choices look like, and how do we do that trying to build a country strategy to address that.

We’re changing our logo to include ‘tic disorders’ because Tourette’s has specific criteria - two verbal tics and two motor tics that persist for a year - and so someone with a different ratio of tics might not get diagnosed as Tourette’s and that is very frustrating because a tic disorder can be equally disabling.

In an ideal world, I would like all medical students and teacher college students to have lecture on Tourette’s. I think all junior doctors and teacher trainees should have lecture on Tourette’s. But teacher/colleges don’t even have papers on neurodiversity and neural disorders.

The brief discussion of neurodiversity and neurotypicality and the interface between them resonates with me. I grew up with neurotypical privilege. I try to remember my gender and class privilege but don't remember to appreciate my neurotypical privilege and I think I should. We think its ok to just chuck money and resources at a problem and it will be fine [xxx] At the same time the lack of support and belonging is what spurs the Einstein’s and Teslas to succeed in the world. The trauma spurs them on, it's interesting maybe we need trauma.