Disability discussion with Áine Kelly-Costello

Disability interview with Áine Kelly-Costello

Melissa: Hello Áine, thank you so much for spending time with us today. I’m here with Camille who is a university student and a powerchair user. We both also have an interest in the intersection of disability justice and climate change activism.  

Áine, you describe yourself as a disabled storyteller, researcher and advocate and you have done a lot of interesting work as a blind activist, journalist, and podcast host which we would be eager to learn more about. You are also part of the disability advisory panel for Auckland council and Co-convener of the Inclusive Greens. As a starting point can you tell us a little bit about your background and where you have lived?

Áine: Thanks for this opportunity, that’s a pretty good introduction. I live on the North Shore in Tamaki Makaurau and in terms of where I whakapapa to my ancestry is Irish and Scottish, I lived in Canada then moved to Aotearoa when I was 9. I’ve lived in Warkworth and now the North Shore.

I also lived in Sweden and Norway more recently between 2019 and 2022.

In terms of my background I studied a bunch of things, I finished school in 2012 and then I studied music and languages basically. Towards the middle of my degree I got involved in the fossil fuel divestment movement which at the time was starting a campaign to get Auckland uni to not invest in the fossil fuel industry, which I ended up getting quite involved in because I happened to be involved near the beginning, when people were needed to set things up. I was really fortunate through that and through the support of 350 Aotearoa to get a lot of background and training in sort of core campaigning competencies around strategy and storytelling and that sort of stuff which is very transferable I think.  Then I started getting more involved in the wider disability community in 2017 when a campaign for accessibility legislation was happening.

Around that time as well, I had been involved in the fossil fuel divestment movement for quite some time by then and I ended up with some really good allies at 350 Aotearoa, so I started doing more systemic stuff (not just for me as an individual) around making campaigning more accessible and inclusive. So I got into doing some trainings around that which meant upskilling myself and trying to do things from a pan disability perspective. I also tried to include the small amount of information I could find on the disproportionate harms and impacts of climate change on disabled people. Back in 2017 this was NOT being talked about. Alongside 350 Aotearoa I created a disability manifesto, so basically a policy document that guides their work in this area. That was the first time that disability and climate work overlapped for me and I was thinking more intentionally about that. In terms of my background after that, it has been a mix of disability activism with a whole lot of different kaupapa and also journalism, I worked at newshub for a little bit as an intern and also have done some freelance reporting and podcasting.  I guess a real thread that runs through my work is an interest in community and being part of community, disabled community in Aotearoa and internationally and being able to connect with people and share their experiences and stories through conversation and in safe ways.  

In the last couple of years I have had the good fortune to start writing for a newsletter called Disability Debrief, which is ‘a specialist and engaging guide to disability news’ I think is the tagline.  So it’s got a lot of analysis of what’s going on in the world that’s relevant to disability and it’s produced by my friend and colleague Peter Torres Fremlin, and I specifically write about climate and environmental intersections with disability for that. So that’s been a really cool opportunity to be able to do more networking in that space for me personally but also made me very conscious of the lack of opportunities for people, specifically disabled people, to be writing stories about the many and varied intersections between disability and climate.

Melissa: That is wonderful work to be involved in. Just going back to your study, what languages did you study?

Áine: English and Spanish mostly but I also did French so I’m fluent in Spanish and French, those would be my strongest foreign languages.

Melissa: When you lived in Sweden was a lot of English spoken there?

 Áine: Yes, well my studies there were in English. My subject of study in Sweden was investigative journalism. I did learn some Swedish but I would not consider myself to be fluent in Swedish. Then in Norway it was a weird time there.  Basically my parents, unrelated to me moving to Sweden, moved to Norway.  They had wanted to be back in the Northern Hemisphere, back on that side of the world for a long time. So just before the pandemic they moved to Norway and when the pandemic hit, I also got covid at that time.  That was in March 2020 and then I had to, like the New Zealand border closed pretty quickly and so it was a better decision to go to Norway, right beside Sweden.  I ended up with long covid and got pretty sick so having my parent’s support was extremely helpful. So it worked out for me to stay there and luckily Norway doesn’t have the same immigration requirements that New Zealand does because otherwise I wouldn’t have been able to stay there. My strongest sense of community roots are here in Aotearoa so I’m very happy to be back here now, although it does kind of suck that my family is in different countries.

Camille: I heard that Sweden didn’t have proper lockdowns?  

Áine: It wasn’t just that they didn’t have lockdowns, it’s that the fundamental strategy was not designed to put in place safeguards and protections for people at highest risk, so for people living in nursing homes, covid ran rampant in nursing homes all over the country.  So many people died.  People in minority and migrant communities who often lived in more crowded conditions, they were not looked after and often the information they needed was not translated for them. The chief epidemiologist was basically saying that we can just carry on as normal, it was really horrible, horrible rhetoric.  I had to stop tuning in to the press conferences because it was so demoralising. The particularly demoralising thing was that a lot of swedish people agreed so you were not seeing a widespread condemnation.  I felt really powerless, like what could I do?  I was seeing this up against the response in New Zealand, like literally beside each other in my social media feeds you could see the stark differences between New Zealand’s response and Sweden’s response.  They were polar opposites.

But even in other nearby Scandinavian countries like Norway and Finland where there were more stringent restrictions in the beginning, however since the beginning of last year all the protections have gone, no one is wearing masks.  I don’t see them coming back unless there is a complete collapse of the health system. There is no focus on looking at the safety of people who might be disabled or immunocompromised.

 So that was rough I would say, like those couple of months. I don’t want covid again, I got knocked around badly by it. New Zealand didn’t take such a sharp u-turn as the rest of Scandinavia but now it’s very much on that same trajectory which is really dispiriting.

It’s brutal that the onus has to be on people with disabilities and we don’t have that collective care anymore.

Melissa: Yes, very true. Would you say all your tertiary studies which also included classical music, and then your employment, made you more passionate about disability activism?

Áine: I think lived experience of disability generally hopefully can be a conduit to connecting with a wider community of people who are facing similar systemic barriers.  It’s not something everybody has.  There are a lot of disabled people, I don’t know how it was for you Camille but there a lot of disabled people who are not connected to a wider community of people , they are quite isolated and that sucks.  So I mean, if you do face those injustices yourself and you have the tools and you have the capacity to be able to get more involved in systemic activism it can really spur hope because doing stuff collectively and tackling things at a systemic level feels more grounded I think. I’m not undermining the fact that many people are basically just in the daily struggle for survival.  I understand that even more since becoming chronically ill with long covid which means life has become so complicated.  I am used to being blind because I was born blind.  

Melissa: yes, things are not so well set up in terms of support systems for people with long covid yet.

Camille: For me, it’s been really interesting also, that intersection of neurodivergence being more accepted as part of the disability community. Lots of my friends have only recently accepted their disabilities in those ways and are having the systems of NZ Work and Income to navigate and going through the exact same stuff even though we have entirely different needs. It’s very interesting.

Áine: In my early twenties I realised that I considered myself to be self diagnosed autistic and after having long covid that neurodivergence has become even more apparent to me, how sensory processing and other ways that my brain is neurodivergent, how that shows up.

Melissa: That’s another area that you have to learn manage your energy as well.

Áine: Yes, manage how overwhelming an environment is going to be.

Melissa: So you’ve told us a little bit about how you got involved in disability work.  It was always related to climate activism as well was it, from the beginning?

Áine: I would say there were different strands to it, like there was the stuff I was doing with 350 Aotearoa. I don’t know if you have been following the work the government has been doing on accessibility legislation. They have now come up with this bill that is basically hopeless, that will set up a committee and it won’t enforce accessibility standards. Of course that’s not what the campaign I’ve been involved with was calling for at all.

Melissa: No, it ( the current bill) won’t reinforce standards and make the legislation actually work.

Áine: No, so that has been an ongoing frustration I think but that was one area I worked on.  I also did a bit of work on Disability Pride. There was a Disability Pride week for a few years but I think there is a lack of funding for that now. The migration work has been a big focus in recent years. The ‘Acceptable Standard of Health criteria for new immigrants’ consider people with disabilities and health conditions to be a cost burden on services and make it very difficult to get visas. It’s a hideous form of discrimination, really, really upends people’s lives and that of families also.

Melissa: Especially if their children are affected

Áine: Children, Migrants and their parents too can all be affected.  So I’m part of a collective who campaign against those requirements and who work with people who are impacted to support them as best we can and advocate with them.  We advocate strategically, we are not immigration advisors. And doing that, and also Green Party advocacy have been a big focus for me in the last few years.

Melissa: Along with those areas is there any other work you have been doing currently?

Áine: I have just started a PhD part time so I am looking at how we can make support and care systems more dignified and better for people with learning disabilities, moving away from institutional types of systems and as I have literally just started so I can’t tell you what my research question will be.

Melissa:  Half of it is being able to focus in on the right question isn’t it?

Áine: Oh for sure.  So I guess I am interested in taking more a systemic lens and a critical disability studies lens and looking at some of the existing initiatives that the government has and how we can make sure that we actually do fundamentally respect disabled people’s rights and actually get there in practise.

I have been working on a season of a podcast called Enabling Commons which is a podcast of a programme called the Disability Inclusive Climate Action Research Program based at McGill University, Canada. So that’s interviewing a whole bunch of people, activists, scholars, policy people, artists who are disabled people who have something to say about this intersection between disability and climate activism so there have been some really fascinating discussions.

Another thing I do is edit the magazine of Blind Citizens Nz so that’s our blindness advocacy organisation here in Aotearoa. Their magazine is called Focus.

I’m still writing for Disability Debrief. Feeling a bit under pressure because of advocacy leading up to the election.  It feels like there is a lot to do and thinking of the amount of time and energy in the day.  I feel really lucky that I have a lot of opportunity to do stuff remotely from home because this is the only way I can work really.  My energy is so much better than it was three years ago but I still have to be so careful.

Melissa: There is still a lot of mahi you are involved in now.

Áine: The Enabling Commons series is almost finished so while I’m luckily able to work on things that I care about I’m still working out how to balance things.

Melissa: How did you start Disability Crosses Borders podcast?

Áine: I basically started that one in 2021 while I was isolated in Norway.  I don’t want to complain because I was very lucky to have the financial security of living with my parents there, but I did not plan to be living in Norway at all.  My mobility was quashed by long covid, I was spending 99% of my time in my room.  I was looking for people to connect with remotely to talk about dislocation in my case but also disability and migration and culture more widely and I thought it would be nice to do some kind of media thing.  I had the freedom to do that living with my parents with that financial security.  Because it’s my own initiative, there’s the flexibility if I have time that I can continue with that too.

Melissa: It is so interesting to hear about everyone’s diverse experiences, moving to different countries.

What would you say are some of the greatest priorities that need to be addressed currently in the areas of disability and climate justice?

Áine: This is always the really big overarching question and I think you can come at it from a lot of different lenses but I think a fundamental one is framing and considering that disabled people need to be visible and valued both as people who are disproportionately affected by climate change but also who have a lot of wisdom and expertise to offer when we are approached about what sort of adaptations and solutions can work for us. Disabled people are often needing to be very creative by default to survive and make a life that works for us in environments that are not suited to our needs. So just really harnessing the leadership of our communities and so whether that’s in policy change, whether it’s activism, whether it’s journalists remembering to talk to us.  All of these things, I think that’s the overarching thing, putting a disability lens across policy activism or whatever you are thinking about.  

Also it really means looking at how particular solutions, if they are not inclusive, might cause harm to disabled people so for example if you were to introduce electric vehicles but not make the charging stations accessible or at the moment we have a lot of e-scooter use on our footpaths which can be useful for some disabled people for mobility but if we actually had  regulations allowing them to go in the cycle lanes. If we had enough safe separated lanes here for use then we could keep the footpath safer for pedestrians and wheelchair users.  So it’s really important to have disabled people actually at the table in decision making and also feeling welcomed in campaigning spaces too.

Melissa: Would you say ableism is a bit of a problem in climate activist organisations ?

Áine: Yes, I mean I don’t think it’s unique to climate activist organisations. Because as with every area of discrimination basically they are so systemic and so baked into how the world has been impacted by colonialism and capitalism everywhere that unless you are actually actively working at undoing discrimination and intentionally focusing on looking at building the world that you want to be living in, then there will be ableism in organisations. Because of this there has been a lot of distrust that has been built up between disabled people and climate activist organisations. So if you look at the plastic straw ban issue there was a lot of important criticism from disabled people, I don’t know about you Camille but some people need straws and if there is not a good alternative available they will ask why this thing that they need is being taken away from them. This distrust has extended through the wider climate movement. There haven’t been relationships built up and that systemic distrust is there for good reason.

Environmental groups still need to realise they can take steps now the create inclusive spaces and it doesn’t necessarily mean that as soon as you have your accessibility sorted disabled people will immediately turn up, it won’t work that way but you have to start somewhere.  I would say that particularly for larger, more well resourced organisations, as much as possible disabled people get some sort of koha or compensation for leading on disability strategies in  conjunction with others in those organisations.

Melissa: What is the risk of new urban planning initiatives that are environmentally friendly not being made accessible or disability friendly and how can we ensure disabled people have a voice in co-designed solutions?

Áine: Climate change planning spans across a wide range of areas. Transport priorities might come under climate change strategies for example. We do need disabled led organizations and disabled people to be able to have input at a policy level because ultimately a lot of this happens at a local level at councils. Critical roles in council include disability advisory panels (which I have just joined in Auckland). At a national level, Disabled person’s assembly for example does a very good job at making submissions. They have a policy team and they do submissions on mainly national stuff but they have one focused on regional level submissions as well. In climate spaces having a disability reference group is useful. Local staff and national staff with disabilities and also disabled people involved in public campaigning efforts. There is a whole range of areas.

For example, cities designed for active transport must mean not removing mobility parking and that doesn’t feel very well safeguarded at the moment. Some people need their own modified vehicle and some need to feel safe that taxis can drop them off close to where they need to go without getting fined.

We need a more heavily subsidised mobility taxi scheme.

Melissa: Those voices are so important.  

Disabled people need to be at the centre of planning for climate emergencies as we face the loss of access to essential equipment, power outages, interrupted access to healthcare and carer support as well as shortages of supplies and food.  There are also mental health impacts to contend with. What research still needs to be done on the ongoing impact of climate change on people with disabilities?

Áine: I suspect we would benefit from looking into the reliability of getting back-up power due to outages, making sure the processes are working,  particularly in smaller towns.

There is a lot to do in the the area of transport, for example acoustic standards for EVs (a safety issue for people who are blind and low vision).

Green tactile markings for traffic islands can be confusing for blind people.

An understanding of impacts on Maori disabled people, with the research led by Maori, will be important. Thinking about coastal erosion impacting on marae and urupā for instance and how that particularly affects tangata whaikaha/whānau hauā.  

We can learn from international research when planning for emergencies and planning infrastructure. Energy champion and hubs for repair and recycling of mobility equipment is happening in the UK.

Melissa: What are some key demands for disabled people to ensure equitable access to what they need in their work lives and personal lives?

Áine: One thing that I have thought about is how can we move away from disabled people being included to disabled people taking leadership? Like having our expertise really valued because ‘inclusion’ is generally on other people’s terms so how can we move to a point where we are in the driver’s seat so to speak? I generally will say to disabled people who are thinking about being involved in movements that they find a way that is not a big jump from where they already are.  So they can use the skills and resources that they have. It does come down to having our leadership valued. Covid showed us how we actually can be more flexible in allowing people to contribute in their own way too.