Robbie Francis Watene, can be thought of as a seed planter. From planting ideas about human rights in her research at the Donald Beasley Institute, to planting coffee in the hills of Mexico. She has grown an international inclusive supply chain through her formation of The Lucy Foundation (named after her prosthetic ‘Lucy Leg’). Watene’s story starts with a horrifying volunteer assignment during her PhD, which left a lasting impression. ABILITY’s Chet Cooper and Itto Outini spoke to the Aotearoa New Zealand advocate to learn more about her work.
Chet Cooper: How did the Lucy Foundation start?
Robbie Francis Watene: While I was working on my PhD I also decided to do an internship working for a disability rights organization. Part of my job was to support the organization’s efforts to monitor disability rights situations in Latin America. As part of this role, I went undercover with a team into a psychiatric institution for disabled people to document the human rights abuses. During this experience, we witnessed torturous conditions or what the UN has called “torture”.
Chet: Where was this?
Robbie: This was in Mexico City. Without going into too much detail about the horrific atrocities that we witnessed first-hand, coming away from that experience, I learned two things. One was a certainty of who I am, an educated disabled woman with support networks around me. There’s a beautiful song by Brooke Fraser, she’s a New Zealand singer, I think she lives in USA now. She sings, “Now that I have seen, I am responsible.” For me, that certainty of who I was in relation to the disability community, but also the realization that it was my responsibility to respond to the injustice I had witnessed. That I could be an active part of the solution beyond just what I was studying in peace and conflict studies, but through my experiences as a disabled woman living in a world of opportunity, with the privileges that I have as a white disabled woman with an education. There was a sense of needing to use my privileges to advance human rights for who was now my community, my global community, the disability community.
Chet: What did you do next?
Robbie: I came back to Aotearoa New Zealand, my internship had ended. I had committed to my PhD. But I wanted to do more. At this time in Aotearoa, there was an article that came out in our newspaper that said Kiwis would be willing to pay more for products if they knew they had been produced in an ethical way. I started thinking, “Why is it that we have Fair Trade, all of these certifications, Organic, all of these things for the products we invest in, but as amazing as these initiatives are, how do they respond to the needs of disabled people?” From what I could tell they focused so much on the “sound-minded” and “able-bodied” person of a family and supporting them to advance their economic sustainability through ethical production and productivity. We thought, “What if we could start working on disability rights through social enterprise, through business?” This is me and my friends talking, brainstorming. We were probably only 24 at the time. Very optimistic, [laughs] maybe slightly naïve. How could we demonstrate the value of diversity in business? We started thinking that we needed a product, having just read the newspaper article. I know it sounds so wild when I reflect back on it now, but what could we use? Kiwis love their coffee. We were students, and of course university students depend on coffee to get through their studies.
So we sent an email out around the world saying, “Hey, we want to work with disability empowerment and employment and education through coffee in some way, shape, or form. We think we have a market for it in Aotearoa New Zealand.” We didn’t know coffee. My focus was disability rights, not coffee, but I’ll tell you what: you can learn pretty quickly if you put your mind to it.
Chet: If you drink enough coffee!
Robbie: [laughs] If you enjoy coffee, yes! And within a week, this email has bounced around the world to several NGOs. We didn’t have our hearts set on Mexico, but we got a response from an NGO in the south of Mexico who said, “We work with disabled people, and they all come from coffee communities. We have tried several initiatives to engage the community,” but they had come to the conclusion, “until we engage the disability community with what runs through their blood, which is coffee, then we can’t progress. So we think that if you’ve got a market for it, we could get something going here.” We were of course very excited. With no funding, we set about hosting a fundraiser and my friends and I traveled back to Mexico. We went back and forth between Aotearoa New Zealand and this coffee-farming community for the next three years. We needed to listen, to research, to understand their challenges. We learned about their coffee production, looked at the inclusion of disabled people in the community and came to understand how collaboration between us could benefit not only the disability community, but their local economy and the environment while also delivering an amazing coffee product here in Aotearoa New Zealand.
That’s how it started. Building that relationship and getting to know people. And that allowed us to work in an equal partnership with these coffee-farming families who had all been affected by disability. Then one of our team members moved over there. She’s half-Mexican, half-Kiwi. She set up a team on the ground and lived there for two years. The community is called Pluma Hidalgo. They’re a coffee-farming community high in the mountains of Oaxaca in Mexico. They’re a population of 3,000.
Chet: Who do you target?
Robbie: Initially, when we started, the target consumer was cafés. It’s not a very profitable model, because cafés buy their coffee in bulk at almost-cost price. When COVID started to take hold in Aotearoa New Zealand around 2020, more people were working from home. We shifted our focus from cafés, we did still supply some cafés, but more to offices or small and medium enterprises. But of course, they started working from home, so there was an incentive to appeal to home drinkers, and that’s been our biggest success. It’s not just people who engage with the disability community who buy the coffee. It’s people who have never considered disability in their lives. We have a wide range of customers. And a lot of churches have been quite interested in ethical sourcing of their coffee for their congregation after church or after a service. That’s been one success area. And now we’ll be working towards securing some bigger contracts with disability agencies, for example, the new disability ministry. I would love to see our coffee supplied through them.
Itto Outini: Robbie, can you tell us a bit about your work with the Donald Beasley Institute (DBI)?
Robbie: Sure! It’s a not-for-profit organization founded in the 1970s by a group of advocates and researchers—including Donald Beasley, who was a pediatrician—who saw the deinstitutionalization movement coming to New Zealand and realized there was about to be a lot of demand for new and better support services for persons with disabilities. Families were calling for some kind of alternate support system. DBI was established to support that call.
Itto: Is DBI part of the New Zealand government?
Robbie: No, we’re not associated with any government or private business. Initially, DBI was set up to bring contemporary thinking and research on disability rights from around the world to Aotearoa New Zealand. The idea was to host scholars, promote international education, draw researchers from overseas, that sort of thing, but it quickly became clear that we needed a framework that was relevant to our culture and our islands and our people. So, in the 1980s, DBI pivoted and started conducting its own research.
At first, the focus was on preventing infringement of the rights of people with developmental disabilities, especially as the deinstitutionalization movement got underway. DBI promoted inclusive research led by people with lived experience of developmental disabilities. That’s still a big part of what we do, but recently, there’s been another shift, this time toward looking at disability through the broader lens provided by the UN CRPD. I was brought onboard in 2018, right after DBI signed a contract with the Disabled People’s Organization (DPO) Coalition of New Zealand to, I guess you could say, bring to life Article 33 of the CRPD.
Itto: What does that involve? What’s in Article 33?
Robbie: That’s the article that calls on civil society groups to monitor governments’ efforts to implement the CRPD. In New Zealand, we have the Independent Monitoring Mechanism (IMM), which is comprised of the Office of the Ombudsman, the Human Rights Commission, and the DPO Coalition. Each one approaches its monitoring obligations in a different way. Our job at DBI is to conduct monitoring on behalf of the DPO Coalition. Our researchers, all of whom have disabilities themselves, run studies and work with our broader disability community to identify the gaps in the government’s progressive realization of their obligations.
Itto: How is it going so far?
Robbie: This is my fourth year as project lead. We’ve engaged hundreds of people with disabilities throughout Aotearoa, all different ages, ethnicities, disabilities, etc., in discussions about human rights. We’ve also trained other people with disabilities to become researchers—basically building the capacity of researchers with disabilities. That’s what gets me most excited. I feel like we’re bringing together a cohort of absolutely amazing people who’re getting us closer to conducting truly inclusive research. It used to be that people would do research on us. Now we’re the ones setting the research agenda.
Itto: How did you first get involved with this work? Can you share a story or talk about your life experience?
Robbie: Sure. I was born with a condition called phocomelia, where the bones in the lower half of my body didn’t develop properly before I was born. I actually learned to walk on a prosthetic leg, which I called a Lucy Leg because when I was a toddler, I couldn’t pronounce words like “prosthesis” or “artificial limb”! [laughs] So, I’ve always lived with Lucy Leg. I’m missing lots of bones in the other leg, too, and I’ve got chronic back issues, as well as all the pains and problems that come with having a slightly different body.
I’ve always been passionate about traveling and human rights. I grew up in a family that emphasized the importance of service, and I majored in peace and conflict studies at university and spent quite a bit of time in the Middle East, studying international conflict resolution and mediation. It took me a long time, though, to incorporate disability studies. I’d almost finished my master’s in peacebuilding before someone from the University of Otago said to me, “Robbie, it’s lovely that you want to change the world, but have you ever wondered how people like us, people with disabilities, experience war and conflict?”
At that point, I wasn’t having any trouble embracing my identity. I’d even started painting my Lucy Leg; it’s always got flowers on it, or some sort of colorful design! I’ve always been open about it. At the same time, though, I hadn’t quite connected with the larger disability community. I hadn’t found my people, I guess you could say. Her question really caught me off guard. I started thinking, like, “Maybe she’s right,” and that made me kind of uncomfortable. I think that’s something lots of people in our community go through: not just struggling to accept ourselves, but learning to accept others, too. After she said that to me, I was like, “You know what? I’m going to look into this.”
To cut a long story short, I did my PhD on the experiences of refugees and asylum seekers with disabilities. I went to Ecuador and interviewed lots of people who’d been displaced from Colombia and Venezuela, and that connected me with the international disability community. I started seeing how not everyone’s had the experiences I’ve had—family support, a roof over my head, job security and education—and feeling that I have a responsibility to respond to these inequities.
When I finished my dissertation, I started looking for work, but even with a PhD, I had a hard time finding anyone to hire me. Eventually, though, someone whom I’d worked with at the university reached out to me. She was the Director of DBI, and she told me, “Look, we’ve just been offered this contract to monitor implementation of the CRPD in Aotearoa, and I’m looking for people with disabilities to work on the project. I think you’d be perfect for the role.”
I took the job without really understanding what it would mean for me, but it’s opened so many incredible opportunities to advocate for people with disabilities. We’re already on our third cycle of monitoring. We started with access to housing, working closely with the families of people with multiple and complex disabilities as well as the wider disability community. From there, we moved on to health and well-being. We’re now on our third cycle of monitoring supports and services as well as the establishment of New Zealand’s new disability ministry.
New Zealand’s considered a world leader in terms of disability rights, and I suppose we are, but we still have a lot of work to do. For example, we still don’t have specific accessibility legislation, and Tngata Whaikaha/Whnau Hau (Mori people with disabilities) continue to experience greater marginalization than the rest of our disability population. I’m grateful for the opportunities to travel and partner with people in other countries. It’s allowing me to bring back lessons from abroad and apply them here, which I think is really important as well.
Itto: You said you interviewed asylum seekers and refugees in Ecuador for your dissertation. How did you find participants for that study?
Robbie: I contacted an organization in Quito called Asylum Access, and they put out the call for participants at the grassroots level. After that, it really just came down to building relationships, having conversations over coffee, that sort of thing. I traveled around a bit, which helped me make connections. There are very few organizations dedicated to supporting refugees and asylum seekers with disabilities, but there does seem to be a lot of interest in the work. I met lots of people who wanted to know how to make their services more inclusive and accessible.
Since finishing my PhD, I’ve learned about some pretty amazing initiatives, including through the UN, and I think that’s mainly because of how advocacy can resonate more broadly now, with all this technology enabling us to communicate globally instead of staying stuck in our silos. That gives me hope.
Itto: What about the pandemic? Has it hurt the disability rights movement, or has it accelerated progress?
Robbie: I can really only speak for the New Zealand context, but I think what it’s done is highlight issues that were always there. We’re talking about financial insecurity, lack of access to adequate healthcare, housing issues, all these areas where people with disabilities have been facing rights violations for as long as anyone can remember. We knew these things were happening, but the pandemic’s brought all the atrocities to the forefront of the conversation.
When the pandemic first hit, we were at a bit of a fork in the road. COVID forced us all to ask, “How are we going to respond to this? Are we going to take a rights-based approach to addressing these issues? Or are we going to sweep them all under the rug?” I’ve seen some examples of both. Remote work and learning have really taken off, and those are things that people with disabilities have been calling for, for many, many years.
At the same time, though, I’ve also seen people backtracking on important initiatives, saying things like, “Yep, okay, that was okay during the pandemic, but now it’s time to get back to normal.” I think that’s an incredibly dangerous, slippery slope to be going down. I feel like, if we can advance disability rights through this terrible circumstance, then we have an obligation to maintain those gains.
Itto: What arguments do you think are most effective for convincing people—employers, for example—to stick with the new way of doing things?
Robbie: That’s a tricky question. I’m not completely sure where I stand. On the one hand, I feel like it’s really important to have a rights-based approach because it shouldn’t matter how much we’re contributing to the economy, how much accessibility costs—we have a right to be able to participate fully in society, without barriers to access, and our intrinsic value shouldn’t be tied to economic value.
On the other hand, research has shown that diversity, accessibility and inclusion are good for business, and I’ve spoken with advocates who’ve found that rights-based approaches don’t always resonate with people in the community all that well, and economic arguments are more effective.
On top of that, I feel like now’s just a difficult time to be having these conversations. New Zealand has been doing really well in terms of containment, but Omicron’s just reached our borders, and people are frustrated, tired and scared. Business owners are really struggling, and because of that, they may be a little closed off to new ideas. Maybe I’m painting with too broad a brush—I’m sure there are some entrepreneurs who are really open-minded and flexible—but I do worry.
I guess I’m concerned that economic arguments might be effective in the short term, but we’d be setting ourselves up for long-term losses. There might come a time or an issue where improving accessibility and inclusion aren’t cost-effective, but that doesn’t make them any less important. We can’t afford to normalize a framework that won’t always serve the community’s needs. At the end of the day, I think we need to make the UN CRPD the foundation of any future decision: any policy change, any legislation, any response to the pandemic, anything and everything we do as a society. Because the CRPD doesn’t just benefit people with disabilities; it benefits the whole community. Everyone.