Juliana Carvalho faces deportation by October 24 unless she can persuade the Government to change, or make an exception, to a rule barring residence to anyone likely to have health costs of more than $41,000 if they stay here. In this open letter to Immigration Minister Iain Lees-Galloway, she explains
Juliana Carvalho: Is it crazy to end discrimination against people with disabilities?
By Juliana Carvalho
NZ Herald·
10 mins to read
Juliana Carvalho, pictured (right) in a "colour run" organised by Parafed Auckland, is fighting deportation on behalf of all would-be immigrants with disabilities. Photo / Supplied
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When I was 19 years old my life was turned upside down. I was a healthy and young woman going through college when everything changed in a matter of days, I felt so unwell that I needed to be taken to hospital, and within 48 hours, I was paralysed from the neck down.
I was at an Intensive Care Unit, and the prognosis was very grim. I have had an acute lupus attack that led to a massive spinal cord inflammation, leaving me totally paralysed.
As you can imagine, the road to recovery was not easy, but slowly through intensive physiotherapy and exercise I managed to recover the movement of my arms and hands. I've learnt how to live independently in a wheelchair. With the support of my family and friends, I got my life back on track.
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In 2004 I finished my studies and graduated from university in Communication Studies and managed to get a good job in the public service sector.
There I created a television show named Make a Difference and I ran it for four years until I moved here. I produced and presented it with the help of a great team. Its main goals were to give disabled and underprivileged people a voice and also shed light on difficult subjects like discrimination, human rights abuse and inequality.
The television show was a great source of education and entertainment and I couldn't be prouder of my team for what we achieved.
In 2010, my autobiographical life journey, before and after becoming paraplegic, was published. The book (Na minha cadeira ou na tua?, free translation In my chair or yours?) was a best-seller and the Ministry of Education in Brazil distributed it to public schools. As you can see, I had a well-established career in the disability and communication sector.
In January 2012, I came to New Zealand on holidays to visit my siblings, Alex and Vivi, who were already living here and ended up falling in love with New Zealand.
I had no doubt in my heart that I wanted to make New Zealand my new home, so I sold all my belongings in Brazil and took the plunge.
I came back to New Zealand in October of the same year and enrolled at an English Course at NZIE. After two months living in New Zealand, I sat the IELTs exam and scored 7.5 overall band.
A month later, I took a job as personal assistant to the Director of Advocacy at the Health and Disability Commissioner's office.
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My boss was a strong woman who deeply cared about human rights. One day after work we were talking about discrimination and unfairness and ended up discussing the Immigration NZ (INZ) policy that discriminates against disabilities.
The policy stated that if you have any of the listed conditions such as HIV infection, severe hearing/visual impairment, paraplegia, amongst other listed conditions – INZ must decline your residency application unless you have an exemption from the Health Requirement.
Despite all my achievements I couldn't help but feel that I should put a huge sign written "RUBBISH" around my neck.
It was November 2014 and despite this policy, I thought I had good chances of having my medical waiver granted.
As INZ weighs up factors such as the cost you are likely to impose on New Zealand health services, your ties to NZ and potential contribution to the country I was fairly confident I had a chance because of my family ties here, my full-time employment, and I had evidence of a high profile career in Brazil as an indication of my potential to contribute to NZ.
My lupus had been stable for the past 10 years and I have already done my rehabilitation to live independently in a wheelchair.
I worked hard and put forward my request for a medical waiver. The process was lengthy, bureaucratic, costly and stressful.
From time to time, I would receive a "potentially prejudicial information" (PPI) letter saying something like, "You are paraplegic, so we are likely to decline your residence application, comment on that."
After many PPI letters, I started doubting my self-worth as a human being.
I am a high achiever professionally and I am lucky to have a supportive and loving family and amazing friends.
On top of that I always felt very welcome by all the New Zealanders that I met, and it was very hard to come terms with the fact that despite all this support the New Zealand government saw me as an unwelcome burden because of my physical impairment.
On top of doubting my self-worth, I started to wonder if I was doing the right thing by persisting. You know, when something is truly challenging, and you start asking yourself, "maybe it is not working because that's the way it should be?"
I went in search for enlightenment and asked someone that I highly respect.
I told him: "Immigration New Zealand has a very discriminatory policy against people with disabilities. Because I have a spinal cord injury, they might deny my residence application. I have to prove that I am productive and worthy to the country. But I'm asking myself if all the difficulties I'm facing are to change my way or are part of the challenge? Should I stay or should I go? Namaste."
He said: "Is New Zealand a place of warriors? Or a place where people just accept what is imposed on them? Life is a fight!"
My conclusion was: if you have a dream you have to chase it. I truly believe that what separates success from failure is persistence and I have had several life lessons that confirm that.
Nevertheless, all the uncertainty, stress and dehumanisation of the process took a toll on my health. Sad and tired, at the end of October 2015, I got very sick. After 10 years of health stability, I had a lupus flare triggered by stress.
I ended up in the hospital with meningitis secondary to lupus. I was still in the hospital when I received an email saying that my residence application had been denied as I wasn't granted a medical waiver.
A day after my discharge I was in the lawyer's office preparing the appeal to the Immigration and Protection Tribunal. I decided to appeal not only because I love NZ and I want to be here with my family but also because giving up goes against my core values.
have a mental image that accompanies me every time I face a challenge. I visualise that I am a strong, powerful and unstoppable rhino. A determined rhino that can overcome any obstacle.
I also appealed because I thought it was not acceptable that in 2015, we were still discriminating against others on any grounds.
This has not changed since, and I cannot accept that so many others and I are less worthy and a burden just because they/I have an impairment.
The underlying message can have a devastating impact on someone's life. It had in my life, and I wouldn't like to see others going through the same. It makes me sad to think that many people might end up believing that they are unworthy. That they cannot contribute to society and humanity. This INZ policy almost made me believe that...
After 10 months waiting, I won the appeal and the tribunal decision was to refer it back to INZ for a fair and correct assessment.
This second INZ decision came after a year and seven months, and reads: "We have declined your application for residence because you do not meet the health requirements to be granted residence in New Zealand, as outlined in the immigration instructions. We have decided not to grant you a medical waiver."
First, I cried my eyes out with my family.
Then I decided to apply for another work visa and keep on fighting.
What I'm going to ask you now is not easy. However, I urge you to please try to empathise.
Close your eyes and imagine yourself in the same situation. Having to leave your family behind because you have an impairment that you cannot change, and through no fault of your own.
Despite all obstacles your condition imposes, you keep fighting and you keep functioning and contributing to society.
However, that does not matter, because some see you as a burden. How would you feel?
But enough is enough. And as a disability advocate, I cannot stay quiet. This is not just about me. This is way bigger than me.
According to the World Health Organization, about 15 per cent of the world's population lives with some form of disability. We are millions of people that want to live free from discrimination. Here in New Zealand we are 1.1 million.
Since 1840 the government policies aim at containing the number of disabled people living in New Zealand. It is time for change.
New Zealand signed the United Nations Convention on the Rights of Disabled Persons in March 2007, and ratified it in September 2008. Legislation and policies should be consistent with the convention.
The principles of the convention are clear:
• Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; non-discrimination;
• Full and effective participation and inclusion in society;
• Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
• Equality of opportunity;
• Accessibility;
• Equality between men and women;
• Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
Imagine a kid with a disability going through all I had to face these last years?
It is inhumane. It has been extremely difficult to battle against a system that discriminates.
The medical waiver process annihilated my self-esteem, consumed my time, energy and more than 20K, it had a toll on my health that no money can pay. It ultimately destroyed my joy to live.
This policy is also unwise – talented people like Van Gogh, Thomas Edison, Franklin Delano Roosevelt, Beethoven, Stephen Hawking and Frida Kahlo (just to name a few) would not be accepted to live in New Zealand following the current immigration instructions.
This policy needs to evolve. Remember that not long ago, women could not vote. Full stop. That was the law. Slavery was the law. Racial segregation was law.
But, not always what is legal is what is right… or fair. And because of the courage and resistance of people like Rosa Parks, as a society, we keep evolving.
My dream is that, in the future, we would be able to say, discrimination against disability was law in 2019, crazy isn't it?
Yours sincerely
Juliana Carvalho
