“Disability is not a bad word, it’s an explanation”

By Cred Consulting

by Cred Consulting

December, 2022

International Day of People with Disability is held annually in December and aims to increase public awareness and promote inclusion of people with disability.

It’s a message 16-year-old Sydney Year 10 student, Polly, is passionate about promoting, as one of the 4.4 million people in Australia living with disability – and one of the 90% of those millions whose disability is hidden.   

Joining Cred for work experience this week, Polly – softly spoken, thoughtful, and as articulate as she is colourfully dressed – opened up on her experience living with disabilities that are not immediately obvious to onlookers, as well as why she’s an advocate for greater representation, and her tips on creating inclusion in the workplace and beyond.

“There’s so many different types of disabilities. I think a big thing is asking a variety of people what they need,” says 16-year-old Polly

Living with a ‘hidden disability’

How do you feel about sharing your story?
With autism, I didn’t really have that uncomfortability with talking to someone. The main issue was just talking to someone I don’t know. But talking about myself, I’m like “whatever”.

Have you ever felt ‘different’?
When I was younger, in primary school, I thought I was broken. I genuinely used to think that everyone got a book of instructions on how to do things and I missed out on it.

I struggled in social situations, saying the wrong thing, and just never knew when it was my turn to talk, whereas it seemed like everyone else did it so freely. I was always a little bit left out.

I used to have such an issue with socks! I would wear them inside out and I had to have my shoes super tight. but I didn’t know why. To everyone else, it was obvious I had inside-out socks and they would be like, “What are you doing?” And I was like, “You don’t do that?!” It’s funny to me now!

Can you share your story about receiving your diagnoses?
Around two years ago, I got diagnosed with ADHD, and that was a big relief for me, to understand, I’m not stupid. We were able to start helping with that, but I still didn’t feel like it explained everything. Six months later, I got diagnosed with Tourette’s syndrome. I had already suspected it, as I was tic-ing.

A year ago, I had been seeing some autistic creators talk about autism in women, and I was like, ‘Wow, this is very similar to me,’ and, ‘Hmm, I wonder…’ So, I talked to my therapist about it and she was like, “yes, you are – with neurodivergency, it’s all a bit connected, so it wouldn’t surprise me”.

I also suffer from generalised anxiety, and have had frequent panic attacks. The anxiety is also super connected to the autism and the ADHD. So, I’ve got really bad social anxiety. Receiving my diagnoses was life-changing.

Do you tell people you meet about your disabilities?

Not as soon as I introduce myself to someone, but I will bring it up early on that I have Autism and Tourette’s, because it just gives an explanation of how I am. And it makes me feel better, and if I start tic-ing, like it won’t freak them out. If they know, I feel more comfortable to be like, “Oh, I’m…I just can’t talk right now,” or “I need to leave.”

What are some of the benefits to having your disabilities?
I think it makes me a more creative person. I definitely like to express myself a lot. I especially love my hairstyles. I change it constantly – it’s one of my favourite things. I think I’m much more comfortable to express myself, especially since a lot of the time I’m, a bit unaware of what people are thinking.

That’s another misunderstanding with autism – that you can’t feel empathy. That is absolutely not true. I’m hyper-empathetic, which means I can’t not think about how people are feeling. I think for autistic people it’s easier to feel empathetic to a situation you understand. I care about people and things a lot, and animals!

What are some of the challenges you have faced as a result of your disabilities that you would like people to be more aware of?
I really only had one friend – and she was friends with everyone! I felt so alienated. I just couldn’t figure out how people got close with each other, other than my friend. With social cues it’s such a big thing, to help make a connection, to know when someone is not feeling great, or if I’m making them uncomfortable, and I just can’t pick up on that. I find it very hard to know the status of my relationship with someone.

If I’m in a stressful situation I instantly go nonverbal. I’m like, “Nope, I can’t do this”.

If your disabilities were people, what would they look like?
I think it would depend on which one it was. For autism, they would be a bit similar to me: they would have very fancy, bright clothes and probably headphones, same as me! But, with the rest of them, they would be really bland. I feel like it would be very loud and quiet at the same time. And probably very tired.

Do you ever wish your disabilities were more visible?
Absolutely. I’d say with autism, I’m pretty good at masking until I’m tired or overwhelmed and it’s just so obvious. And with anxiety, I’m medicated for it, so that helps, along with years of therapy.

The Sunflower lanyard, which is for invisible disabilities, is becoming more popular in Australia. It’s popular in America and the UK. People often wear them for transport or airports, just so people are aware, and they can get the accessibility they need. I like the idea of that. Obviously, I don’t want to make myself a target for bullying or anything.

Have you experienced any bullying due to your disabilities?
It was before I was diagnosed. In primary school, I was intentionally left out and people made fun of me for being quiet. When I was younger, I used to wear heaps of hair clips and I would have a fringe tied up right on my head and big donut socks, and I remember heaps of people being like “I love your style!” and laughing, and I was like “Thank you!” I thought I was just getting lots of compliments.

Half the time I didn’t even know I was being made fun of, so it turned out fine for me!

Improving accessibility and inclusion

What does greater accessibility and inclusion look like to you?
I don’t think this is something that would happen, but people thinking about accessibility more, like, having quiet spaces. Me being allowed to wear headphones – I literally can’t go anywhere without them. I’ve got such bad sensory processing issues due to sensory processing disorder. It basically means I don’t have that filter for sensory input that everyone else does, and I can’t function without headphones. And so, I guess this is more specific to teachers, but don’t harass people for wearing headphones at school. There could be a reason.

What’s one thing we can all do to better support people with disabilities?
I think people should never assume things about other people. Everyone experiences the world differently. You should always ask people what they need, and how they feel and what’s going on for them.

What are some misconceptions about people with a disability you’d like to address?
It is so important for people to get the accessibility they need because I think a lot of people think, “Oh, why do they get that and I don’t?” It’s because you don’t need it! Maybe this person is struggling and, providing extra time on an exam will help them resolve that. They’re not getting ‘extra’. In fact, they’re trying twice as hard!

How can we better approach accessibility and inclusion in the workplace?
There’s so many different types of disabilities. I think a big thing is asking a variety of people what they would want. I think, for me, it would be quiet places, and probably less intense lights – It’s more the bright white ones. Just thinking of sensory stuff like textures and having some fidget stuff available – anything textured and sensory. It could be a stress ball or fidget spinners, which are self-soothing. It helps to reset and regulate yourself.

What is the importance of quiet places to you?
Just to have a break. I fell asleep before because I was so tired. I get really bad fatigue just because I get overwhelmed so easy. Anxiety and sensory things are everywhere and it’s not really something I can control. I find it exhausting to get through that and to do work.

What’s your experience of sensory processing disorder, for those who aren’t familiar with it?
I always describe it as layers and layers of sound. Being in places like school and on transport, I find really difficult. I’d say my sensory issues are one of the most debilitating things I have because it affects how I’m able to go to places.

How does that impact the way you approach everyday activities?
I like to look up places beforehand to be like, ‘this is the layout,’ and try and think of how many people might be there. Even if there’s nowhere I could go that would be quiet, I just try and prepare myself as much as possible.

Are there any stigmas around invisible disability you’d like to address?
That’s a big thing – you can’t see it, so how do you know it’s real? People can be very judgemental, or deny it completely,  saying, “No, you don’t have Autism”. And it’s not until the point of meltdowns that people are like, “Oh, it’s real”. But, I don’t want to get to that point. That’s what we’re trying to get the accessibility for.

What’s one thing you wish people wouldn’t say to someone who lives with disability?
I really hate when people are like “no it’s not a disability, it’s a different ability”, like, disability is not a bad word, it’s an explanation. And by taking that away you’re taking away, what people go through. You’re not, valuing their experience. So, I think people should never say that to a disabled person.

What advice do you have for promoting greater inclusion?
You need to listen to what people are asking for. You cannot assume that someone’s just doing it to get out of things. You don’t know what’s going on, that’s what an invisible disability is.

People say, “You should always push yourself,” and I’m like, “I’m not sure there’s any point if it’s just going to cause me to have a meltdown.” I know my limits, and I don’t think I should push that.

Also, asking to hug and touch people is a big one in general. It’s hard, but I’m now able to say, “I’m so sorry but can you please not hug me right now”. I just think we should never assume or force people. Just be gentle and listen.

When do you feel most comfortable, and at your happiest?
Just when I feel like people aren’t judgemental. I think I’m good at telling when someone’s judging me, or when it’s a happy, accepting environment – that’s when I feel much safer and much happier. I feel like asking consent to touch someone, and stuff like that, always makes me feel like people understand.

What advice would you tell your younger self at primary school?
I think I would say, just don’t care as much. There’s a reason you’re like this!

What are some of your proudest accomplishments?
I would say there’s few. Just accepting myself was a really big thing for me. Getting diagnosed helped that so much, because when I was younger, I genuinely thought I was broken. And so just being able to accept myself and be, like, “that’s not true” and understanding myself better. And asking for the accessibility I need. It’s not like I’m getting more than other people, I’m just trying to be equal.

Related reading:

Creating more inclusive and liveable communities with and for people with disability 

Enhancing social cohesion, inclusion and community resilience in Waverley

Invisible Disability Australia

Polly proudly wears the Hidden Disabilities Sunflower to let people around her know she has a non-visible disability and that she may need a helping hand, understanding, or more time.

Polly (left) with her mum, Cred Director Jen Guice