'Embracing my identity unapologetically': Noell Ratapu on making her way as an artist

Ko Noell Ratapu toku ingoa,
Ko Maungahaumi te maunga
Ko Mangatu te whenua
Ko Waipaoa te awa
Ko Rongowhakaata, Te Aitanga a Mahaki te iwi

My name is Noell Ratapu, and I'm a 24-year-old Queer, Māori, Disabled woman artist from Aotearoa. In 2019, my family and I made the decision to move to Southern California, becoming medical refugees to access lifesaving treatment that was not approved in my home country for my degenerative disability known as Spinal Muscular Atrophy (type 3). Since the age of 11, I lost the ability to walk and began using a wheelchair. My primary passion lies in art, as well as advocating for Disability rights and promoting the normalisation of the Disabled experience, so that it is no longer considered taboo for able-bodied individuals.

The D*List: When did you find your voice as an advocate or activist? How did you find your way into that space?

Noell: Since moving abroad, I have gained a tremendous sense of confidence in my identity as a Disabled woman. Coming from a small beach town in Aotearoa where there were only a handful of people in wheelchairs, and most of them were much older than me, I lacked representation and connections. I struggled with this aspect, constantly feeling the need to shrink myself to fit in and hesitating to inquire about accessibility in different places. However, living abroad has changed that for me. I have encountered a more diverse community where Disabled individuals are visible and celebrated (but obviously more work is to be done). This newfound representation has allowed me to embrace my identity fully and unapologetically. I no longer feel the pressure to conform or diminish myself. Living in Southern California has exposed me to a vibrant Disabled community and numerous resources. I have been able to connect with people who understand the challenges and triumphs of having a Disability. Sharing experiences and learning from one another has been incredibly empowering. Additionally, I have discovered organisations and support groups that actively promote Disability rights and accessibility.

Overall, my experience of moving abroad has not only provided me with essential treatment for my Disability but has also given me the opportunity to grow and find my voice as a Disabled woman. I now recognise the importance of representation and the value of connecting with others who share similar experiences.

The D*List: You’re also a prolific artist - tell us about your work and your creative process.

Noell: My art depicts various styles, primarily abstract and self-portraits. Art, in any medium, has granted me the ability to transcend into a different reality. It has become a profound source of freedom, carrying me through life even in moments of despair. Over the past three years, I embarked on a digital art journey due to the weakening of my hands which made painting, photography and drawing challenging for extensive hours. This shift allowed me to explore my creativity without experiencing exhaustion, igniting a stronger and brighter passion within me.

Creating art has been instrumental in my journey, providing comfort and serving as an outlet for self-expression. It has become a powerful tool for me to communicate and connect with others, sharing my unique perspective as a Disabled woman. Through art, I continue to discover new depths of creativity, resilience, and personal growth. Since moving here, I have had the opportunity to showcase my work in art galleries further
validating my artistic journey and connecting with a wider audience.

The D*List: You’ve done quite a bit of writing about the intersection of disability, queerness and Te Ao Māori on your blog - what inspired you to start writing, and what do you enjoy most about the process?

Noell: Expressing my thoughts and feelings verbally has always been a struggle for me, a trait I've carried since my childhood. But when it comes to writing, especially creative writing during my school days, I have always shined. Last year, I rekindled that passion within me, driven by the constant messages I received, eager for updates on my life after the release of my 2014 documentary. At that point, I already had a website showcasing my artwork. It struck me, why not take it a step further and make it a personal journey? That's when I decided to dive deep into my life through blog posts exploring different topics.

Through my writing, I find myself able to artfully articulate emotions and experiences that resonate with sob many people. It's like creating a haven for growth, understanding, and empathy. The best part, though, is the personal connections I've made. Every time I post a new blog, I receive private messages from individuals pouring their hearts out to me. One group that truly touches my soul is my fellow Disabled community. They reach out, expressing how my words capture feelings they couldn't put into coherent sentences. Somehow, I manage to convey their experiences and emotions perfectly. The impact is profound, as they relate to my writing on a deep level.

But it doesn't stop there. Even able-bodied individuals have approached me, expressing gratitude for the eye- opening perspective my words provide. Some have humbly admitted their past ableism, never having truly considered the importance of accessibility. It's not just about disabled individuals—it's about creating an inclusive world for everyone. This journey of self-expression through writing has been an incredible gift. It has allowed me to touch lives, foster understanding, and challenge preconceptions. And I couldn't be more grateful for the opportunity to make a positive impact through the power of my words.

The D*List: What does internalised ableism mean to you?

Noell: I often describe internalised ableism as a stubborn tumour that resurfaces time and again, just when I think I've finally overcome it. It's like an unwelcome guest that refuses to leave. Then only way to keep it from taking over is by committing to its daily healing, constantly working to dismantle those harmful beliefs and biases that have ingrained themselves within me. I face some personal examples of internalised ableism, such as calling myself lazy when my body desperately needs to rest or my brain questioning whether I'm faking my tiredness. I also find myself limiting myself when it comes to opportunities because negative thoughts about my disability make me believe I won't be able to meet expectations. These self-imposed limitations prevent me from fully embracing my potential and exploring new possibilities that could contribute to my personal and professional growth. It's essential for me to challenge these internalised beliefs, recognise my worth, and advocate for the accommodations and support I need to thrive. It's an ongoing journey, a constant effort to challenge and overcome the internalised ableism that tries to define my self-worth and limit my potential. But I'm determined to keep fighting, to cultivate a mindset of acceptance, empowerment, and self-love.

The D*List: How have you found it moving to the US? There’s a lot of logistics involved and disability stuff to set up?

Noell: My parents and I sold everything we had because my health was declining rapidly, and we relocated to California with one suitcase each and our dog. In my opinion, it was a humbling experience, having everything we owned reduced to the contents of a single bag. Ideally, I wish I never had to leave my home of Aotearoa. I miss my family so much, and I haven't been able to see them since leaving due to the cost of getting back home. But I’m forever grateful I was able to get the treatment I needed to prolong my life and independence.

However, if I'm being completely honest, there is still so much work to be done here. The system does not make it easy, and the fight for accessibility continues each day. While many places are required to adhere to the standards set by the Americans with Disabilities Act (ADA), some individuals and establishments merely meet the bare minimum, creating unnecessary obstacles. Moreover, there is no comprehensive guide to help navigate the numerous available benefits, such as disability income, qualifying insurances, paid care hours, and food support. It's as if they keep this vital information a closely guarded secret, leaving us to unravel the complexities on our own.

For anyone with Disabilities planning to move abroad, I strongly advise doing extensive research on the accessibility of the surrounding area, particularly when it comes to finding suitable living arrangements. Even in Southern California, my family and I faced significant challenges in finding an affordable and fully accessible place to live. Additionally, I recommend joining groups aligned with your interests and actively engaging with the Disability community in your new location. Building a new network of connections is crucial, as they can provide valuable insights into the medical system, available benefits, and more. Furthermore, having friends in a completely new environment can make a world of difference, so don't hesitate to reach out and create new relationships. One remarkable aspect here is the strength of the Disabled community, united in demanding our basic human rights. We support one another, share invaluable resources and advice, and stand up for each other when needed.

The D*List: Have you noticed many differences between attitudes to disability in Aotearoa vs USA?

Noell: I think wherever you go you’ll encounter assholes. However, the major difference lies in the population size, which results in a diverse range of perspectives and attitudes towards Disability. As I mentioned earlier, I come from a small town where encountering someone my age in a wheelchair was a rarity. Which made people react with shock, showering me with pity or occasionally resorting to name-calling.

In contrast, here in California (can’t speak on the rest of the U.S) people don't really bat an eye. It's not necessarily because everyone lacks compassion, but rather due to the sheer number of individuals with Disabilities. In my apartment complex alone, I have witnessed a significant number of people in wheelchairs —far more than I ever encountered in my hometown. However, I must admit the attitudes of able-bodied people can be somewhat oblivious, as if they are in their own world. This can present challenges when it comes to advocating for our rights to accessibility and the overall lack of consideration we often face.

The D*List: You’ve explained in the past about receiving lots of attention following a documentary that was created about you in 2014, with people reaching out to you for guidance and support. Part of the rationale for The D*List is creating spaces just like that, where disabled people can connect over shared experiences. What kind of support or community space do you think might’ve been useful for you back when that documentary was being made?

Noell: When the documentary 'Noel in Focus' was filmed in 2014, it captured a snapshot of my life as a 14–15-year-old. Fast forward to the present, and I am now 24 years old. Back then, I was deeply withdrawn and uncomfortable with my Disability, as is evident if you've seen the documentary. I didn't want to be defined by my Disability and tried to distance myself from anything related to the medical aspects of my life. However, I want to emphasise that this is far from the truth now. Presently, I am incredibly confident in who I am as a Disabled woman, and I wouldn't have it any other way. Once the documentary was released to the public, I found myself thrown into the spotlight, receiving an overwhelming amount of attention that I wasn't prepared for, especially at such a young age. People in their 30s reached out to me seeking advice, but I was just as lost and uncertain as they were. I lacked the wisdom and life experience to offer meaningful guidance.

As my health started rapidly deteriorating and I became unable to do many of the things I once could, I felt compelled to retreat from all the attention. During that period of my teenage years, I was grappling with numerous challenges, both internal and external. Mentally, I was still struggling to establish my own identity. Although others saw me as a young teen who had a firm grasp on the experiences I was going through, the reality was far different—I was truly struggling.

Looking back, I believe it would have been immensely beneficial if there had been a platform or group chat where people with Disabilities could share our experiences without feeling pressured to fix each other. A space where we could find common understanding and have a supportive community willing to listen. I think such a support system, especially for people with Disabilities around my age, would have made a tremendous difference during my darkest days as a teenager.

The D*List: Reading through some old messages between us and saw that you asked me about shaving my legs after surgery? Why was that important to you at the time?

Noell: During that time, I found myself without anyone in my circle who had undergone such a significant surgery. I was desperately seeking someone who could relate to my experience, someone who had already been through the healing process and emerged on the other side. Adapting to an entirely new way of living, I had to relearn and readjust every aspect of my daily routine to accommodate my new limitations. Simple tasks like figuring out how to shave my legs became daunting challenges that couldn't be easily resolved through a quick Google search. I had to navigate through trial and error, relying on my own experiences and occasionally seeking guidance from Olivia for tips. Truthfully it was the first time I ever reached out to another person with a Disability for advice, especially after realising that those around me were unable to provide the answers or comfort I needed.

Fast forward to the present, I am fortunate to have formed meaningful friendships with numerous people who share similar experiences of living with Disabilities. We support and uplift one another as we navigate the daily struggles and share updates on our lives. The instant understanding and connection we share is incredibly refreshing. It's a sense of relief to be in an environment where we don't have to go above and beyond to over-explain ourselves just for others to grasp our experiences. It's like taking a deep breath of fresh air—an indescribable feeling that brings immense comfort and validation.

The D*List: You’ve documented your journey with Spinraza - how does that treatment work, and what’s the latest on it being funded in NZ?

Noell: In a nutshell, let me explain my disability. Normally, humans possess the SMN1 gene, which produces protein for motor neurons, enabling movements like walking and arm mobility. We also have a backup gene called SMN2 that produces a small amount of protein. However, individuals with SMA lack the SMN1 gene, either due to complete deletion or severe damage. Although we have the SMN2 gene, it doesn't produce sufficient protein for normal muscle function. As a result, our muscles become extremely weak and atrophy. SMA is a degenerative disease, causing faster deterioration and muscle wasting. This is where Spinraza comes into play. By increasing SMN protein production, Spinraza slows down or halts the progression of the disease and potentially restores strength. Typically, Spinraza is administered through an intrathecal injection in the lumbar region. However, in my case, my spine is fully fused with titanium rods from my neck to my tailbone, posing a challenge for doctors to administer the injection safely and effectively. To overcome this challenge, an alternative option was developed—an intrathecal injection through a suboccipital port, located in the upper part of the neck. I was fortunate to be one of the first 25 people with SMA to undergo this surgery.

To illustrate the difference in strength before and after treatment, let me provide some examples. Before Spinraza, I slept 16-18 hours a day and could hardly leave my bed. I lost the ability to engage in any form of art that required hand movements. To give you an idea of how weak my hands were, I couldn't even light a lighter or hold a pen properly. I struggled with daily tasks like showering and activities involving my arms, such as brushing my hair. Cooking, something I loved, became impossible. My head would constantly droop, and I lacked the strength to lift it back up without assistance. It felt as if I was losing mobility and abilities every day, leading to a constant state of grief. It was like experiencing the death of a loved one repeatedly for years. The pain of losing oneself was unbearable. However, I held onto a glimmer of hope—a light at the end of the tunnel.

That hope manifested in me finally starting my Spinraza treatment. It has been almost four years since then, and I have regained many abilities that I had lost. I can now stay awake during the day without feeling exhausted, and my sleep patterns have become regular. I can brush my own hair, and daily tasks no longer drain all my energy. I have rediscovered my passion for cooking and explored new interests like digital art and clay work. I can create art for hours without my hands becoming sore, which has greatly benefited my mental health. Art serves as therapy for me, so regaining that ability is truly an indescribable feeling. I have also developed new hobbies, such as caring for plants and upcycling thrifted items. I take pride in maintaining an aesthetically pleasing living space, especially since I now have the energy to do it mostly independently. The floppy neck is a thing of the past, and I have regained strength in those muscles. I can now support my own head and lift it back up when it tilts.

Regarding the latest update on Spinraza funding in New Zealand, it is currently approved only for individuals under 18 years old. Once they reach that age, the support is abruptly cut off. I know multiple people with SMA who have had to become medical refugees and move to either Australia or Canada to access the assistance they desperately need. I honestly cannot comprehend why New Zealand continues to choose not to fund this treatment for individuals over the age of 18. It’s a heart-wrenching realisation that we are not being considered what’s so ever. We are basically either left to die or we are forced to leave everything behind and move.

📸: All of Noell Ratapu's art is shared here with permission and under license.