Juliana Carvalho
Juliana Carvalho was born in 1981 in Porto Alegre, Brazil. When she was 19, a spinal cord inflammation left her in a wheelchair. Instead of feeling sorry for herself, she turned this life-changing event into an amazing opportunity for growth and development. She is best described as changemaker, storyteller and inspirational speaker.
As I rolled into Aotea Square at 5 pm on a Monday, surrounded by seagulls and passers-by, I couldn’t help but feel nervous of what was about to unfold. Lots of people of different ages, backgrounds and nationalities were at the iconic Auckland spot, observing what I was about to do.
Although I had spent some time predicting all the things that could go wrong with the experiment, as soon as I parked the wheelchairs, a warm sense of trust washed over me. I had 3 friends, Elina, Steven (from Storyo.co) and Leandro (from Gaea Podcast) plus my mom (thanks, mum!) looking over me. Being a catalyst for change was a risk I was willing to take to start the conversation about our societal definition of disability and self-worth, and address the shame that is often attached to the ableism our society tries to uphold.
Let me share my personal story facing ableism. In a nutshell, ableism is discrimination or prejudice against people with disabilities. It defines people by their disabilities and as inferior to the non-disabled. On this basis, people are assigned or denied certain perceived abilities, skills, or character orientations. Quick example: people with disabilities perceived as asexual beings, as non-capable of being productive members of society or as being inspirational.
I was a happy and active kid, had a lot of fun in my teens, never had any health issues and never had much contact with people with disabilities. On the 18th of May 2001 in 48 hours, my life changed. I had an episode of Transverse Myelitis caused by Lupus (which I had no idea I suffered from). In plain English, I had massive inflammation in my spinal cord. The discharge notes from that first hospital admission read: severe tetraparesis. I lost movement and sensation of three quarters of my body and ended up in a wheelchair.
At the beginning I needed 24/7 care: Help to brush my teeth, to feed me, to change my nappies. Shower? Only in the bed.
Fast forward, 4 years after my tragedy. My life was back on track – I recovered the function of my arms and hands, learnt how to live independently in a wheelchair and had graduated from university and had a good job. But, there was something from my rehabilitation process missing. From all areas of life, the hardest to adapt to was the sexual one.
I guess despite being in a wheelchair, I had an ableist mindset. I thought sexuality was not part of life for someone with a disability. I thought my disabled body was not attractive and that I was not worthy of love. I thought it was impossible to reach an orgasm without movement and sensation.
Remember this happened nearly 20 years ago.
I would search on the Internet the keywords ‘sex’ ‘woman’ and ‘wheelchair’ and no results would come up. I knew no other woman in a wheelchair to ask: How do you have sex? My struggles to feel complete again and experience life to the fullest (yeah, baby! Spoiler: we can have orgasms), I share in my autobiography In my chair or yours? Published in Brazil in 2010, the book is available in English on Amazon and was under the Top #100 Hot New Releases.
It is a very candid narrative. I don’t hold anything back, including my struggles to accept my new condition. Of course, it is not easy to acquire an impairment as it comes with a sense of loss, or change. But it does not mean my life is worth less or that I can’t have fun and that my version on wheels is inferior to my version standing. It took me time, a long time, but I’m at peace with who I am now. In the good days, I’m thankful for what happened to me when I was 19. To navigate the world in a wheelchair has expanded my life experience in so many ways that it is hard to describe (at least in English, my second language).
The problem (it’s a biggie) is that we live in society. And, you reading this article right now probably have – as has the majority of our society, including me before the wheelchair – an ableist mindset. The manifestation of the ableism is the lack of accessibility. That encompasses physical, attitudinal, systemic, communicational and methodological access barriers. In those almost 2 decades wheeling around, I had the privilege of experiencing all sorts of discrimination. The hardest one I ever fought was the systemic, followed by my own ableist belief system.
Back to Aotea Square. The stunt in a public place may sound familiar. I got inspired by the experiment on Self-Acceptance by Jae West. If you haven’t come across her video, please google “Woman lets the public cut her hair for powerful message”. We both explore the damaging role of shame in our society. In her words “Shame isolates us whereas vulnerability reminds us of our shared humanity.” Through reflecting on my own experience as a woman with a disability dealing with New Zealand’s immigration systemic discrimination, I at some point doubted my worth as a human being. Once I got back on my wheels, I wanted to know that I wasn’t alone in my conviction: we all have value and can contribute to society.
As I knew the experiment was provocative I was emotionally prepared to have not a single person sit in the chair and for the experiment to fail. I could see curiosity on some faces but I had to wait for the first interaction to be made. As I was open about my vulnerability as a migrant woman with a disability and the historical facts that have a lasting impact on the self-acceptance of people with disabilities I was able to connect and deeply interact.
Slowly but surely people started coming up and read the signs I was using to educate and bring awareness of the reality of people with disabilities. The spontaneous messages of support and assurance that we are all the same, brought me a deep sense of belonging. I know I am doing the right thing by persisting with my dream to live permanently in New Zealand despite not meeting the acceptable standard of health criteria. I know I’m worthy of being alive and that I can contribute.
Self-acceptance and self-worth are themes that everyone can relate to. The lack of it seems to be an epidemic worse than coronavirus. But some groups of people (yeah, I’m talking about people with disabilities), have a lot of external affirmations that collaborate to aggravate that feeling of not being worthy. We live in a world where kids with disabilities are bullied to the level that they contemplate suicide. I’m sure you came across Quaden Bayles’ recent story.
We live in a world where the philosopher Peter Singer publicly asserts our lives are not worthy of living. And with the advance of genetic tests, ending pregnancies bearing babies with disabilities is growing every day.
We live in a world where first world countries have eugenic migration policies. Yep, we’re talking about Aotearoa New Zealand.
As someone who could walk until I was 19, I know well the difference of treatment ‘Ju walker’ and ‘Ju wheelie’ has been receiving from society. As someone who knows and has experienced the crystal clear difference, I feel I have a responsibility to be vocal about it. That’s why I created the campaign #LetHerStay. If you have read this far, I’m sure you have a couple of minutes to watch the outcome of my self-acceptance experiment. And, please, show your support by signing my petition:
Juliana created and presented the Brazilian public television show Make a Difference, which promotes human rights and respect for diversity. She is the author of the Comedies of Crippled Life blog and also collaborated with the media group RBS to create the blog No Barriers, addressing topics pertaining to accessibility.
She produced and directed the award-winning short film If the Eyes Cannot See, The Legs Cannot Feel (2008) and won the Award for Best True Story from Marie Claire Brazil magazine (2012) for an essay on her sexual rediscovery after becoming paraplegic. Juliana coordinated the first two editions of Movimento Superação (Overcome’s Parade – celebrates diversity, timed to commemorate the International Day of People with Disabilities) in her native state in Brazil.
Juliana’s autobiography In My Chair or Yours? was published by Terceiro Nome in 2010. Her inspiring story made headlines across her native Brazil. Garnering a strong public response, her book sold more than 30,000 copies and has been distributed to public schools throughout the country by the Ministry of Education. Major television networks have interviewed Juliana, and before long she had become a spokeswoman for the inclusion movement.
Her book is now available in English on Amazon.
In 2012 Juliana moved to New Zealand to join her mum, brother, and sisters. She worked for 3 years for the Health and Disability Commission (HDC). Juliana currently is leading a campaign to change the NZ immigration policy that discriminates on disability or health grounds. Her petition has gathered more than 31K signatures and made international headlines.
To learn more and contact her visit www.juliana.co.nz
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