With many thanks to Philippa Mullins for transcribing this episode.
>> Juliana: Honestly, the impact of going through receiving those letters saying, ‘you’re rubbish, you’re not good enough,’ that had a huge impact on my mental health, my self-esteem, on my relationships.
>> Eugene: You just begin to ask yourself the question: am I a human being here? Who am I? What am I?
[Intro piano music: forthright melody accompanied by a habanera dance rhythm.]
>> Áine: Welcome to Disability Crosses Borders, a home for the stories where disability, migration and culture meet. It’s a brand new podcast and blog. I’m your host, Áine Kelly-Costello, a disabled migrant myself. Find out more, support the show and post your comments at disabilitycrossesborders.com.
Today, I talk to two disabled migrants to Aotearoa New Zealand whose lives have been turned upside down by the layers of disability and health-based discrimination built into Immigration New Zealand’s policies. They share their stories and I ask them what needs to change so that disabled people’s rights and dignity are upheld. It’s the 6th June 2021.
Juliana Carvalho is an award-winning disabled speaker, professional and author who has been an unrelenting advocate for disability access, rights and inclusion. She contracted lupus and became paraplegic at 19. Originally from Brazil,, she moved to New Zealand in 2012 with her family and became employed in the disability sector. However, when applying for residency, , she was rejected by Immigration New Zealand multiple times on health cost grounds She recently won a seven-year battle to be granted residency, but she’s also campaigning for systems change, so the immigration policy values the contributions and dignity of all disabled people.
Such as for example Eugene Liapin.
Eugene Liapin is an A-grade public relations graduate. In December 2019, he migrated from Russia to New Zealand with his wife. A wheelchair user, Eugene was welcomed into the country as a fee-paying international student. However, in applying for a work visa, Immigration New Zealand has deemed him likely to pose ‘significant health costs or demands” on the country’s health services. When we spoke for this interview, Eugene was facing deportation, but he has since received further news from Immigration New Zealand, which you’ll hear about later in the show.
Eugene and Juliana join me now. Hello, welcome to Disability Crosses Borders.
>> Juliana: Hi Áine, thanks so much for having us here.
>> Eugene: Hello, nice to be here today, thank you for having us.
>> Áine: I’m interested in what brought you both to New Zealand. Juliana, could we start with you?
>> Juliana: Yeah, sure. So, in Brazil, you know, there’s a lot of crime and my siblings were both assaulted at point gun. And they decided to move, to come to New Zealand. So, I came to New Zealand on holidays just to visit them and I just fell in love with this country and I decided that, OK, I’m going to live here, along with my family.
>> Áine: And Eugene, how was it for you?
>> Eugene: I had lived all my life in Moscow, which is a huge city. And then I graduated from my university as a producer of performing arts. I just thought that I would like to get another experience. Totally another experience. So, we decided, with my wife, just to move to another country, an English-speaking country because English is the only foreign language which we know. So, we began to save our money and it took two years. And after that, we decided to move to New Zealand just to study, and to work after that. So, that’s how I came here.
>> Áine: And Juliana, at this point could you just walk us through, if you are a disabled migrant or somebody with a health condition and you’re coming to New Zealand, what are the steps that Immigration New Zealand requires you to do to be eligible in order to a work visa or get residency?
>> Juliana: The reality is the rule is immigration must decline any resident’s visa application if you have any of those conditions listed as deemed to pose a high demand or cost to the system. And the list of those conditions includes all kinds of disabilities and some chronic health issues, like diabetes, HIV. So, they have to say no. Unless you are granted a medical waiver, which is an exemption of the health requirement. And the criteria with the health requirement is, they will put it on a scale: OK, you have this condition – in my case I have lupus and I’m paraplegic, both are on the list – and they will analyse on the other hand your ties to New Zealand – my family was, you know, my mum and three siblings here, very well connected in the disability community, working dah dah dah, so I could prove the ties to New Zealand – they going to take into account your potential contribution to the country and also the level of cost which you might impose to the system.
>> Áine: Tell me what happened then the first time that you faced, you know, one of the eligibility decisions by Immigration New Zealand.
>> Juliana: I remember the first letter that I received saying, ‘you are paraplegic. Based on that information, we’re likely to decline your residency. If you want to provide medical reports that dispute that.’ So, it’s just so stupid, really. It made me so angry. How on earth am I going to dispute that I’m paraplegic, you know? So they have this bureaucracy that they have to go through, so they make you go through all the little steps, you know, and that’s really dehumanising and humiliating. And then in 2015, so, they did decline the first time, then I appealed with the Immigration and Protection Tribunal. It took 10 months for the tribunal to say, ‘yeah, Immigration made a lot of mistakes and was really unfair, incorrect assessment in my medical waiver assessment.’ They sent me back to Immigration and then I had 19 months of waiting and having to prove that I have value, that I can contribute to then get a second no.
So, I thought I had a chance because, with the potential contribution, well, I had evidence of my high-profile career in Brazil. And I was working full time. And in the level of cost, my lupus was in remission for the past ten years. And have already done my rehabilitation, so I know how to live independently in a wheelchair. So, I thought I had a chance. Honestly, the impact of going through receiving those letters saying, ‘you’re rubbish, you’re not good enough,’ that had a huge impact on my mental health, my self-esteem, on my relationships. And imagine you having to listen to that for many many years – that you’re not good enough to be here. So the sense of belonging as well was impacted. And I’m confident, I’m articulate, I have an amazing family, lots of friends. So, I count on a lot of support. And even with all that support network, I was really really depressed because of many many years of, you know, being treated like rubbish because of this bloody policy. And imagine the impact of that on a kid with a disability. You know? Like, how on earth will a kid prove their potential contribution to the country?
But you’re setting up people for failure and the message to the people with disabilities in this country as well, it is, ‘we don’t want more of your kind, because you cost too much.’ And this deep, deep-rooted belief that no matter how much you contribute, you will never be contributing enough to compensate the cost you might impose. And that makes me really angry, you know, like when you compare people to money. And you see contribution always as monetary contribution. There’s a lot of people with disabilities that they probably could not be able to speak or to work, but they do deserve respect.
>> Áine: Thinking about the contributions of disabled people as varied, and not all on a spectrum that’s based on productivity and the amount of money that can be funnelled into the economy, which seems to be the metric. Eugene, what has happened in your case so far? You’ve tried to apply for a work visa after studying in New Zealand. What’s happened?
>> Eugene: Yes, my story is pretty similar to Juliana’s, but I’ve just applied not for the residency but the study-work visa. I received a letter, the first letter, where they tell me that I’m highly likely to be, that my visa is highly likely to be declined because of my conditions. And, after that, I actually provided them with a lot of evidence that you’re not right. Because, the medical expert in this letter tell me, he assessed my medical condition and he assessed me without even seeing me. He just saw, like, that I’m a wheelchair user on the paper, and he saw my diagnosis. But he never saw me as a person. So, he stated that I’m not capable of work and I’m not capable of study. And this is amazing. Because he stated it after I already graduated from the University of Waikato. From the university here in New Zealand. So, I tried to dispute it. I collected medical evidence from both Russian and New Zealand doctors, which actually stated that I’m quite capable of working, that I already have wide work experience in Russia. So, but all my evidence was in vain. They just ignored it totally. And, a few days, they sent me a final letter that they declined my application and they see no other way why they should accept me or make an exemption. So, they just declined. And now, I’m on a stage where I will collect some additional evidence next time and all this cost money, as you can imagine, to just apply for reconsideration of my case.
But that’s not the only thing which I’m doing. I’ve begun a public campaign on social media just to tell my story, this injustice and this discrimination which I’ve already faced. And a lot of people were shocked, a lot of people supported me. So, I hope that the public outrage can be maybe the only hope which can help me to find justice in this country.
>> Áine: Juliana, you talked about the huge impact that, you know, this entire battle ended up having on your mental health. Eugene, how have the Immigration New Zealand’s rulings so far ended up, sort of, impacting on you, you know, mentally and in your own life?
>> Eugene: Not in a good way, you can imagine. Er, it’s really hard to keep fighting every day. Just wake up and understand that you are against a monster, that you are against a system, that you are actually alone. There is nobody who can help you. There are people who, maybe, would like to help you, but you need to take the step and everyday just prove that you are good enough, that you can work, that you can study. And it’s really strange, it’s like you need to prove that you’re actually a human being. Because, you know that you have rights as a human being and they simply deny it. So, you just begin to ask yourself a question: am I a human being here? Who am I? What am I? And, of course, it’s really painful and it’s not painful for me, it’s painful for my family. My wife is crying every day actually. I can do nothing just to comfort her. I can just continue my fight. Because I understand that, yes, I see myself as a strong person who can fight. But I know that under my back, there are a lot of people with disabilities who, for some reasons, cannot oppose this monstruous discrimination like I can.
So, I feel, like Juliana said, it’s bigger than me, it’s bigger than Juliana. This is about the perception of people with disabilities as a burden, as trash, actually. Because they stated in this report that I’m not ‘ASH’, I’m not ‘Acceptable Standard of Health’. OK, that means if they tell me that I’m not ASH, it means that they tell me that I’m trash. And I’m not trash. I don’t agree to accept it. That’s why I want to fight. That’s why I continue my fight.
>> Áine: Juliana, you continued to fight this system all of the way until you were able to stay in New Zealand. What did that take? So, we got up to, there was an initial residency rejection, the tribunal said, ‘oh, actually, there was evidence that wasn’t taken into account’, there was a reassessment, another rejection. What came next?
>> Juliana: Then they denied my next work visa. Then they denied my request for reconsideration for the work visa. Then they denied my letter under the Section 61. Then I was facing deportation. I appealed against deportation on humanitarian grounds. Then, the tribunal decided that, ‘nope’ – they gave me a three month work visa to organise my affairs and leave the country. So, that was, I should have left New Zealand in May 2020. Then my last option would be a ministerial intervention and the first, the same week my appeal went to get to the minister’s office, New Zealand went into full lockdown because of Covid-19. And with that, all the temporary visas were extended, including my three month work visa to leave the country. It was extended up to September 2020. And on July 22nd, 11:52, my lawyer called me, I was in the office, and he said, the ministers say yes. But, and that was like a huge relief and was amazing.
But for me, it was like I won the battle because I got the yes for myself. But the war is not over, because there was no change in the policy.
[Short interlude: decisive piano chords]
>> Áine: So Eugene, tell me what you ended up hearing on the 17th of June.
>> Eugene: Yes, this was actually our victory days. Immigration New Zealand told me that they actually approved my visa application that they accept my reconsideration, and now they grant me post-study work visa for almost two years.
I felt such a relief because I understood that there is no threat of deportation for now. And, but at the same time, I understood that I have no energy to celebrate this because I already spent so much energy and emotions into this fight, so then they actually told me, okay man you won. Yeah. But I just could not find energy to celebrate, I was just like, Okay, finally, that’s over. That’s good.
>> Áine: It took a lot to get to this point. Do you know what prompted them to change their minds.
>> Eugene: I think the real game changer was public opinion. Because when we firstly reach some media support, some journalists began to call them and ask some questions. Why do they decline my application, what is happening, why are they doing this. So, I feel like all this public attention, and the media support, just made it really stressful for them.
>> Áine: What do you feel like happens next in terms of going beyond case by case.
>> Eugene: We already made the precedent. Now, any people with disability in this country facing this situation will know that there is a hope that actually this person can achieve can receive a work visa or residency or whatever they applied for. This is the first part.
The second part is, we continue our fight. And I feel that this is just the beginning of the fight. And I really hope that the final decision of this fight will be as good as the decision on my case.
My case showed that actually when you face any kind of discrimination, you have to fight. And even if some people tell you that you have no chances, you have to fight to the very end, because there is always some chances.
[Short interlude; rhythmic piano chords]
>> Juliana: It’s hard to come to terms with that, you know, because I was a person that, I was born without any health issue or disability and I lived my life until I was 19 with all the privilege of someone who doesn’t have any physical impairment. Like, I’m the same person, and I know that I’ve been treated differently just because of my impairment. And I just won’t accept that. I think that people don’t realise that disability doesn’t discriminate, you know, and, at some point, the same way that happened to me, you might end up as well with some kind of impairment and it will, you know. And we shouldn’t disregard the beauty of human diversity, right? Because everyone loses when those kinds of laws and policies pretty much segregate and try to eliminate people with disabilities from the communities. Everybody loses.
>> Áine: The process of having to prove your worth again and again is essentially what Immigration New Zealand is asking, right, so.
>> Juliana: The problem is that there is nothing, nothing you do that will prove to them that you will contribute, honestly. I tried so hard, like, I’m a published author, right. My book was published in Brazil in 2010. It was distributed to all public schools in the country, as a tool, you know. And that wasn’t considered like a potential contribution. My income, like, I was really well-paid, you know. So, I was paying a lot of taxes as well. And that was not enough. So, it’s a really eugenic policy that needs to change. And it won’t change until we take a stand and say, ‘enough is enough, I won’t accept that.’
[Short interlude: four decisive piano chords]
>> Juliana: And it’s like, just those crazy migrants with disabilities trying to mess around with some other country’s rules. No! This country signed the UN Convention on the Rights of Persons with Disabilities.
>> Eugene: Yes.
>> Juliana: And the Article 18 talks about the liberty of movement and nationality. So, honour what you agreed to do internationally. You know, so it makes me very very angry. And the message, actually, as I always say, this is bigger than a story, this is bigger Eugene’s story, and this is bigger than Immigration. This is about challenging the status quo that people with disabilities are a burden. And that is really really rooted here in this country. And that needs to change. And I know this living here for the past eight years. The disability community is really scared of, first it’s not unified. And two, it’s really scared to speak up. And, honestly, look back at history. There was never ever ever a class of privileged people that looked to the minorities and unprivileged –
>> Eugene: Yes.
>> Juliana: – and said, oh, let’s share. No.
>> Eugene: It’s always a fight.
>> Juliana: Yeah, it is a fight. And we need to fight. And we need to fight until we get what we want.
>> Áine: You are petitioning parliament at the moment. What do you hope to change, what do you hope for the petition to achieve?
>> Juliana: So, the petition is very simple, is very clear. It’s just, I’m asking the government to take into account the UN CRPD with regards to immigration. So, put the immigration rules side by side with the UN CRPD and remove anything that breaches what the convention says.
>> Áine: In terms of rights.
>> Juliana: It’s that simple.
>> Áine: Rights on liberty of movement and being able to move around.
>> Juliana: Yeah, in terms of non-discrimination, yes, non-discrimination on disability grounds.
>> Áine: I’d like to ask both of you this question. If you had a message for the minister of immigration and for the government generally in terms of how disabled people are treated within New Zealand’s immigration system, what would you tell them? Juliana?
>> Juliana: I would say please honour what you agreed to do internationally and follow the UN CRPD, you know, and stop with this narrative, the systemic narrative that we will never contribute enough to outweigh the potential cost we may impose.
>> Eugene: I would say, I am disappointed by you because I knew that New Zealand is a country which celebrates diversity, representativity, and equal opportunities for everyone. But you just totally ignored my education, my experience, my personality. You just see only my wheelchair. I’m bigger than my wheelchair. And a lot of people with disabilities are much much bigger than their impairments.
>> Áine: Eugene, was there anything else that you wanted to add?
>> Eugene: Yes, I just want to say thank you to every person that is supporting me. First of all, I want to say thank you to Juliana, because she didn’t stop fighting even when she won her own battle. The people, the audience, the ordinary people, not government – I am very thankful for everyone who helped to share my story, to make my case visible, and this is my only strength.
>> Áine: If people would like to get in touch with both of you and perhaps support you. Juliana, how can they do that?
>> Juliana: So, you can just go to my website: www.juliana.co.nz or on Instagram and Facebook as well: J-U-L-I-A-N-A
>> Áine: Perfect. And, Eugene, how about you?
>> Eugene: The best way to communicate with me is to find my page on Facebook or on Instagram. My name is Eugene Liapin, and I’ll spell it for you: E-U-G-E-N-E L-I-A-P-I-N.
>> Áine: Thank you so much to you both.
[Short interlude: rhythmic piano chords]
>> Áine: On the 23rd of March this year, at a rally of hundreds of disabled people outside parliament, Juliana delivered the petition. It’s now before a Select committee. Speaking at the rally, this was Juliana’s message.
>> Juliana [speaking at the rally, outdoors]: I tell you, to fight the system, a system that discriminates, was the hardest thing I ever faced in my life. The medical waiver process annihilated my self-esteem and destroyed my drive to live. The emotional toll was way worse than becoming paraplegic. I have a dream that, in the future, we will say, oh, can you believe that discrimination on disability grounds was acceptable in 2021? I truly believe that we can make change.
[Outro piano music begins under speech: forthright melody accompanied by a habanera dance rhythm.]
>> Áine: Check out the show notes for more info and a link to a transcript and a blogpost version of this episode. Remember to subscribe to Disability Crosses Borders wherever you get your podcasts. Till next time!