PEOPLE: “It was up to me to find my own community” – How Kera started Fibromyalgia Aotearoa NZ

Kera Sherwood-O’Regan is passionate about making social change movements accessible and equitable for everyone. After being diagnosed with fibromyalgia and realising that the majority of information available wasn’t relevant to her or others in her community going through this experience, she took the responsibility upon herself to build and support a community with relevant and accurate information.

Growing up with a strong support network and Maori community, Kera believes strongly in the power of role models and community engagement. In this interview, Kera shares why and how she started Fibromyalgia Aotearoa NZ, and her views and experiences with ableism.

  • Why did you originally start Fibromyalgia Aotearoa NZ?

I started Fibromyalgia Aotearoa NZ because at the time I was diagnosed there just wasn’t any support here. Most people, including health professionals, hadn’t heard of it, and it was taking most people many years to get diagnosed. As a result there was hardly any information available, and where it did exist it was predominantly from the United States.

As I started to navigate the health system here and my own experience of Fibromyalgia I realised that a lot of that information just wasn’t relevant in a New Zealand context, and if anything it was contributing to a lot of people’s fears, and I would say internalised ableism, around the condition.

So it was really important to me that there was good support for people going through Fibromyalgia in Aotearoa, and I felt that if there wasn’t that support provided formally elsewhere, then it was up to me to find my own community and to support others who were also navigating this journey.

I wanted to make sure that there was a place for people to go when they first got that really long, hard to spell word from their doctors, and that it would be a place where people could support each other and realise that it is possible to be well with Fibromyalgia – even if that looks quite different to the lives we had before.

  • How has the direction of the organisation changed over time, including during COVID-19? 

Initially it started out online – building a website, then Facebook groups and Zoom meet ups. The demand just kept growing, and as we started to reach more people it became possible to meet up in person, so I started facilitating support groups in West Auckland, and then added a Central Auckland group, and have been on the look out for potential facilitators in other regions as well.

To be honest, it’s been difficult during COVID-19 but for a lot of reasons that are different from other organisations. I had already facilitated Zoom sessions, so I wasn’t too worried about moving to digital in a technical sense, but rather making sure that everyone in our community had access to the right information and support. Many people with Fibromyalgia are also in the high risk category for COVID-19, and we tend to have a lot of co-morbidities – or other conditions alongside Fibromyalgia.

So for example, I had pneumonia and pleurisy recently, so as well as having some challenges with Fibro, I also have to be particularly careful because I know if I caught the virus I would be likely to have a worse outcome than people without other conditions.

So we ran a Collective Care Zoom Hui with others from the disability community which was really good to see what services existed, and to make sure our members would be aware of services that might be able to help them – like priority online shopping delivery.

We’ve also increased the frequency of meetings – so having them online via Zoom each week. But the truth is that it’s been very difficult during this period – there is so much going on, and it’s hard when you’re not a big NGO with paid staff, but people just supporting voluntarily, and when we all have health needs ourselves as well.

  • How have your personal experiences of Ableism impacted how you run and manage Fibromyalgia Aotearoa NZ today?

I think they’ve massively impacted my approach. When I was first diagnosed and first started FMNZ I didn’t really have a good understanding of ableism, disability rights, or the disability sector. It hadn’t even occurred to me that I was disabled, or that that was a label I could claim for myself.

Although I didn’t really understand it, I did definitely feel that there was a general approach to chronic illnesses and Fibromyalgia in particular that didn’t sit right with me. I didn’t like the way our people were treated, or the language that was used, or the way we talked about ourselves and our community. It all felt very deficits-focused. And that’s important to a degree – it’s important to be real about the challenges we face, and not pretend like getting Fibromyalgia is like winning the Lotto. It’s not. But there was always just this sense for me that our community deserved so much better, and that there were changes that could be made.

As I learnt more about disability rights and ableism I began to recognise that a lot of the things I struggled with, and what a lot of our community was struggling with, actually came down to internalised ableism. It also came down to ableism from the wider community – and especially from the medical community.

So this understanding of ableism and disability rights really impacts everything in my approach to FMNZ now – it impacts the messages and framing I use when talking about issues; the way I communicate to new members who are grappling with a recent diagnosis; the way I want us to collaborate with the wider disability community; and also hugely the way I engage with the medical sectors as well.

The medical profession has been horrendous to people with disabilities, and people with Fibromyalgia and it’s really not good enough. That’s a big push for me at the moment.

  • Have you seen Ableism in the community during COVID-19? 

Content Warning: Ableism, Eugenics

Unfortunately, yes, to a massive extent. We’ve seen this in the way disabled people and people who are at high risk are framed as being appropriate casualties in this pandemic – for example a lot of messaging in New Zealand has been for the general public not to panic because “only elderly and people with pre-existing conditions die from it”.

We’ve seen it with people dying overseas, and with ideas in the United States and elsewhere that disabled people who rely on ventilators should give up their life-supporting equipment because somehow saving the life of an abled person is seen as more valuable than saving the life of a disabled person.

We’ve seen a lot of pontification on whether our community should be a sacrifice in triage, and whether people should bother saving our lives, because there is this assumption that our lives are terrible. This includes a lot of the medical profession who should know better, including a GP Practice who sent letters to at risk patients asking them to sign Do Not Resuscitate Orders so they could prioritise care for the otherwise healthy.

Then there’s this whole eco-ableist narrative about how “humans are the virus” and “earth is healing itself” which completely disregards the human cost of this pandemic, that that cost is disproportionately borne by disabled, indigenous, rural, communities of colour etc. and which also completely shifts the real causes of climate change from corporations who could change their practices today if they wanted to – and puts the blame on those who have contributed least.

It’s unfortunate that I really could go on and on, there’s just been so much ableism come to the surface over the last few months.

  • In your view, what can governments, communities, businesses and individuals be doing to stamp out discrimination against people with disabilities during and after COVID-19? 

Fundamentally for all those sectors I think it comes down to listening to our community first and foremost. There is this perception that we’re some voiceless monolith, which is completely untrue. We’re out here having these conversations, often on social media, blogs, and other publicly accessible forums.

So people can actually hear what we’re thinking about, they just have to put the work in to recognise that their practices have been excluding us, and make a concrete approach of seeking out disabled voices to listen to – and a broad range at that.

Also make an intentional approach to not only listen to the disabled voices who are the most palatable or seem to be the least confrontational. If you care about our community you need to be listening to the most marginalised and those facing intersections of structural oppression – and you need to be prepared to sit with the discomfort that might bring. So listen without jumping to action, and listen for what we need. 

On a governmental level, I’d like to see governments actively listening to the disabled community – so that could be governmental advisory panels that are backed up with resources and powers to make decisions about our communities; funding disabled organisations to respond; utilising rights-based messaging in all of their communications; and fundamentally resourcing our most at risk communities to be safe. No one should be having to go without kai (food) so they can afford PPE; or having to be sick with no access to healthcare because they can’t afford to get tested.

There’s a long list, but I think it starts with actually viewing our community as experts on ourselves and our own experiences, and taking our lead on what our community actually needs.


About the expert

Kera Sherwood-O’Regan (Kāi Tahu, Te Waipounamu) is an indigenous multidisciplinary storyteller and activist based in Aotearoa New Zealand. She runs social impact creative agency, Activate Agency, to co-create community-led stories and projects for social change. Kera’s work and activism centers structurally oppressed communities in social change, and crosses the intersections of indigenous & disability rights, hauora (health), and climate change. She is also the Founder of Fibromyalgia Aotearoa NZ, and in her spare time facilitates support groups for people living with chronic pain. Kera is a member of and collaborates with many NGOs on issues of climate and disability justice.

Photo description: Photo of Kera Sherwood-O’Regan, an Indigenous Māori woman with light olive skin and long brown hair, sitting in her living room. She is wearing a white collared jumpsuit, vintage style tortoiseshell glasses, Haus of Dizzy love heart earrings, and red lipstick. She wears a Māori pounamu greenstone pendant around her neck, and she is smiling slightly at the camera. There is a green houseplant and wooden furniture in the background.

Photo credit: Jason Boberg