Humans of Avivo – Nina Butler – Changing the narrative 

Nina Butler has never been one to quietly accept any limits placed on her – either physically, or from the expectations of others. From the moment she surprised doctors by speaking at just six months old, Nina has been gently – and sometimes stubbornly – proving people wrong. 

Doctors were initially puzzled by baby Nina’s disability and placed low expectations on her – even questioning her quality of life and whether she’d be verbal. While they were trying to ‘label’ Nina, they simply said, “she’s a funny looking kid.”  

Nina has since taken the power of this title back and now uses it to her advantage as part of the name of her prolific blog – Inner Musings of a Funny Looking Kid. Nina’s a clever and witty writer, sharing her life experiences and shining a light on what it’s like living with a disability in a world that often doesn’t understand – or chooses to ignore – our unique qualities. 

Proving them wrong

Nina has certainly proven her medical professionals wrong and at 41 years old, she’s experienced more than many people do in a lifetime – good and bad. 

From skydiving and abseiling, to acrobatic flights, appearing in TV commercials and giving talks to large audiences, Nina’s life has been far from limited. Nina even added a ‘naughty forties’ list to her blog, which she’s been diligently working her way through since her 40^th birthday.  

If you tell Nina she can’t do something, you bet she’s going to make it happen!  

This can-do attitude was the catalyst for a couple of her more extreme experiences. It’s served her well throughout her life, continually proving people wrong about her abilities and living a bold life, filled with adventures.  

That same determination now fuels her advocacy, creativity and independence. 

Advocacy

Advocating for herself has been a big part of Nina’s life and her independence has been hard-won.  

For much of her childhood and into adulthood, well-intentioned family and friends would step in to do things for Nina because ‘it was quicker’ or ‘felt safer’, but Nina flourished when she was afforded the space to grow. 

She’s been living independently for almost a decade and while she accepts occasional help from her mum, she chooses to keep her family and friendships less about ‘tasks’ and more about enjoying their time together. She engages an Avivo Support Worker to take her to her weekly Pilates classes and to accompany her to appointments, as and when needed. She uses Avivo to enhance her life and give her a little more freedom. 

Avivo ambassador

Nina has been involved with Avivo for around 12 years and is currently a member of the Avivo Council, following her earlier role as an Expert by Experience (Council’s previous iteration). These roles allow her to influence decision-making at an organisational level, ensuring the voices of people with lived experience are not just heard, but actively embedded into Avivo’s practice.  

“One thing I really like about Avivo is that it’s an organisation that truly listens and understands and then tries to implement what it’s heard,” said Nina. 

One of her most impactful contributions to date is the work she’s currently doing as an Avivo ambassador on the Everyday Harm Project. This new project explores the subtle, often unintentional ways people with disability can be harmed through language, assumptions and behaviour. 

The project focuses on things many people don’t even realise they’re doing: infantilising adults, speaking over people instead of to them, or stripping away dignity in the name of ‘care’.  

Nina said this project is so important because it’s calling attention to moments where humanity is quietly taken away. Even with the best intentions, people can de-humanise others due to a lack of understanding, which can have long-lasting consequences for the recipient. 

Through storytelling, education and lived experience, the project is designed to help Support Workers and organisations recognise how respect, autonomy and choice should show up in everyday interactions.  

It’s work that Nina hopes will continue to be embedded in Avivo’s learning and development suite, supporting staff to deliver truly person-centred support. 

“I can learn from people, and they can learn from me,” Nina said. 

Full and vibrant life

Outside of advocacy, Nina lives a full and vibrant life, unrestricted by anyone’s expectations. She shares her home with her beautiful rescue cats, has a partner, runs her blog and is writing and creating content as a freelancer. 

For Avivo, Nina represents what’s possible when the right support is in place that works with you – giving you the freedom to live life on your terms.