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Hello there and welcome to the Dear Dyslexic podcast series brought to you by

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Rethink Dyslexia, the podcast where we're breaking barriers and doing things differently.

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I'm Shea Wissell, your host, and I'm so glad you can join us.

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I'm a fellow neurodivergent and I'm coming from the lands of the Rwundjeri people of the Kulin Nation,

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where I live and work, and I would like to acknowledge and pay my respects to

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all the tribes across our beautiful country and to all First Nations people listening today.

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Our podcast was born in 2017 out of a need to give a voice to the stories and

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perspectives of adults with dyslexia.

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And our voice has grown stronger year after year.

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We're now a globally listened to podcast with guests from all around the world.

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Join us for insightful conversations about living with dyslexia and other neurodivergences

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across all walks of life. Our special focus is on adult education,

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employment, social and emotional well-being and entrepreneurship.

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We're excited to be bringing you this episode and invite you to like and follow

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us or even better, why not leave us a review on your favourite podcast platform.

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So let's get started.

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Hi everyone and welcome to our latest episode of the Dear Dyslexic Podcast show.

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I'm your host, Shea Wissell.

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And today we're going to be taking a bit of a different approach where I'm going

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to be talking about my research.

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And so throughout this year, we're going to shake it up a little bit with having

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me doing some podcasts on my own and then bringing guests on.

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But I recently had published my research titled, I Hate Calling It a Disability,

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Looking at Dyslexia Through an Intersectional Lens.

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And this research follows the work I've done through my doctorate.

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And so I wanted to share it with you today because it's a really lengthy paper

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and I wouldn't be very dyslexic friendly if I just shared the paper and I didn't

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give some type of summary around the research as well.

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Previously, we've done some infographics, but today I thought I'd use the opportunity

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to use the podcast to talk about the research and this paper.

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And really, it's a powerful look into how labels can impact our self-perception

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and the inclusion of dyslexics within society.

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It was co-authored by Dr Judith Hudson, one of my mentors who works closely

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with me, Dr Rebecca Flower from La Trobe University, and then one of my peers,

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Bill Goh, who is a dyslexic PhD student.

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And what we wanted to do was bring a fourth person in that could look at it

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from a lived experience perspective and review it from a dyslexic perspective

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so we didn't just have researchers writing this paper.

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So let's take a bit of a deep dive into what this paper actually means for our

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dyslexic community and society as a whole.

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Firstly, let's understand the background. So for those of you who are listening

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that may not know about dyslexia or what it is, it affects one in 10 of us.

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In the US, they say it affects one in five, so really quite high prevalence rates.

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And it makes up the largest, at the moment, the largest neurodivergent group.

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So if we're thinking about other neurodivergent groups like autism or ADHD.

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Those with autism make up about one to two percent of the population at the moment.

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Those with ADHD make up around five to eight percent and then dyslexics are

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making up one in ten or one in five.

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Prevalence rates are changing all the time. We're seeing lots of adults being

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diagnosed at the moment with autism, ADHD and also dyslexia.

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So at the moment we're the leading neurodivergent difference but this may change over time.

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Yet for many dyslexia still remains really misunderstood and often overshadowed

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by misconceptions and other neurodevelopmental differences and still a lot of

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stigma attached to being dyslexic.

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So this research took a qualitative approach where we interviewed adults with

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dyslexia and employers separately, so not their employers but other employers,

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to understand how labels like disability,

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neurodivergence, superpower influenced those with dyslexia's lives.

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So one of the key take-homes is that labels really do matter.

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Participants overwhelmingly felt and rejected the term disability and not because

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they don't face significant challenges or different challenges but because the

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term often carries stigma and discrimination.

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For some the label felt limiting, forcing them into a box that didn't align

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with their complex realities and also didn't really talk about their strengths.

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One participant said that I hate

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calling it a disability it's society's barriers, not me, that disable me.

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And this perspective really aligns with the social model of disability,

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which argues that it's not an individual's traits that disable them,

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it's society's lack of accommodations and supports.

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Think about it, if workplaces, schools and communities embrace diverse ways

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of thinking and learning, dyslexia might not be perceived as a limitation at all.

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But what about the other side of the spectrum.

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The idea that dyslexia is a superpower. This label is gaining significant traction

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at the moment and we've seen recent campaigns by Made by Dyslexia who are emphasizing

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the strengths like lateral thinking and problem solving that those with dyslexia can have.

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And we're seeing this big movement particularly on social media at the moment

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around these terms of superpower.

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Yet this research highlighted that most dyslexic adults did not resonate with

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the term superpower either.

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They acknowledged that they had strengths like resilience, creativity and empathy.

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But many saw these as coping mechanisms developed over time to navigate a world

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that isn't dyslexia friendly.

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So not innate superpowers that we're born with, but skills that we develop because

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we're constantly having to use them to navigate our way around the world.

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One participant shared, I built strengths out of necessity, not because of magical abilities.

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These perspectives remind us to celebrate strengths, but without romanticising

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or ignoring the very real challenges that dyslexic individuals face.

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And we found that these types of labels may marginalise those with dyslexia

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who are really struggling day to day with their difficulties,

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who don't have functional reading skills, who can't fill out forms,

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who can't get a job or are being underemployed because of their dyslexia when

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really they've got a high amount of skills.

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That they could be using. And so this is part of society's need to start changing

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the way we look and think about dyslexia.

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Also out of the research, we looked at the intersectional lens and that's looking

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at how power can play in an individual's life and the impact that we may have

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on what a power structure might look like.

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And so we looked at this through the power of labels placed on individuals with dyslexia.

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So for those that see dyslexia as a superpower, they seem to be the ones in

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high profile careers or high profile jobs. They're at the top of their career ladder.

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And so it doesn't affect them if they disclose they're dyslexic anymore.

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It doesn't impact their financial ability. It doesn't impact their job role

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or their career opportunities.

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And so they're the ones sitting up at the higher point of that hierarchy.

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And then if we think of the medical model where we're diagnosed with a disability

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or difficulty, and that's through specialists or health practitioners.

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Again, so there's that power dynamic of a medical model where a practitioner

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is telling you you've got this disability now based on the DSM-5,

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which is a diagnostic mental health psychiatry disorders. I've got that wrong.

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We'll put it up so you can read it.

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But the DSM-5 is what diagnoses us as having dyslexia or a specific learning

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disability or difficulty in the first place.

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And then if we think about that from a power structure, again,

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you know, when we're in school, the teacher has all the power, the student doesn't.

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And then when we're in the workplace, the employer has the power to place these

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labels on us rather than us being able to own and really identify with these labels.

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So we're looking at the different power structures involved.

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And that's something that hasn't really been looked at before and was a really

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interesting part of the research that we undertook as well when writing this paper.

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I think also the fact that when we interviewed employers, they really saw dyslexia again,

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if you're thinking about power as a real strength in the workplace,

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that they could see how dyslexic employers could be real value or an asset to

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an organisation because of the different ways of thinking and doing things and

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the way they can contribute.

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But these employers had exposure to dyslexia through their children or a family member already.

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So they could already understand the difficulties those employees were facing

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and they already knew the kinds of compensatory strategies and supports that

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they could in to really enable their dyslexic employees to thrive and shine in the workplace.

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So the third label we wanted to look at was really this neurodivergence label

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that's come about in the last couple of years, particularly on social media.

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Neurodiversity has been around for a long time. It was coined by Judy Singer,

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looking at the strengths that autistic people in her family had and coming from

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a strength-based model rather than a deficit model. And that to neurodiversity.

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We need diversity in everything we do from biodiversity to the workplace,

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to education, to society.

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If we don't have diversity, then we can't grow and learn and thrive.

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And that's what we see in the environment. If you look at biodiversity,

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we take some mixture of plants and animals and the environment to enable things

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to thrive. And that's what we need as a community as well. So really strength-based.

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And then over the last five years, we've seen this neurodivergent movement comes

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through in this label where we say everyone in the world is diverse,

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we're all neurodiverse, but then those that are neurodivergent or have dyslexia

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or autism or AD, we diverge off the diverse.

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And that means that we have a different way of thinking to the general population.

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And again, looking at those strengths around the different ways of thinking and doing things.

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And so what we've seen is this huge push, particularly

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through the autistic community and now the ADHD community to

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really take hold of this neurodivergent label

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but we're also seeing it watered down because multiple conditions

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and differences are now being placed under this label we've got

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bipolar we've got mental health conditions and differences we've

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got neurodevelopmental differences and so

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what we're seeing is then if everyone's put

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under this big umbrella then our difficulties are

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not supported properly because we're saying okay that group

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of people in our workplace are neurodivergent so they just need

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a quiet space low lighting you know and

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we put these particular labels then

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on what they may need when dyslexics really need a different

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type of supports to those that are autistic or those that are adhd but we also

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know that these conditions overlap significantly and so if you're dyslexic there's

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a high chance that you might have adhd or you might have autism and so some

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of these strategies will work for the broader group but there's also specific

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strategies that are needed to ensure that dyslexics are thriving in the workplace.

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And so we don't want to get lost. What our research found was the dyslexic community

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wasn't really embracing the neurodiversity or neurodivergence label either.

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They weren't feeling part of that community. And that at the moment,

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it feels like we don't really have a broader community to be part of.

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And that the neurodivergent conversation has really been centered around autism

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and ADHD when it's so much broader than that.

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And we need to start thinking in the workplace more broadly than those two conditions.

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So where do we go from here? The research really makes a compelling case for

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rethinking the different labels altogether and what we're seeing through social

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media and what we're seeing in the news and globally around these different labels.

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For those with dyslexia, identity first language like saying I am dyslexic rather

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than I have dyslexia was empowering but they use both terms interchangeably

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and so sometimes when I go to speak people say it's not dyslexia it's a specific

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learning difficulty or a specific learning difference.

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And yes, that's the label used in the DSM-5, but what are adults and what are

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individuals wanting to use for themselves?

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And at the moment, dyslexic and dyslexia seem to be the most common.

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Most comfortable terms for them to be using at the moment. So we can't take that away from them.

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That is their preference. So whether you're an education employer,

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a parent, you have to let that individual choose what label is most suitable

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and most comfortable for them in their skin.

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So the choice of language may seem small but it has a ripple effect and employers

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and educators can adopt these terms to foster environments where dyslexic individuals

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feel valued and understood and this isn't just good for dyslexics, it's good for everyone.

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When we challenge ableist language like we've talked about and what we saw in the research.

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So dumb, stupid, try harder, not find detailed enough.

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We had one participant ask what it was like to have an intellectual disability

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and some really negative labels that were placed on our participants from a young age.

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And those labels were sticky and they stuck to them. And as they progressed into adulthood,

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they still had those labels, feelings attached to them so we could see the impact

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that this had on self-esteem and self-confidence and people's ability to then

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be able to self-advocate if they're going to and disclose because if they're

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going to disclose the fear of those labels coming back

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and resurfacing is really, is a real fear for people and is a real challenge

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and a real stigma that we have to try and break through.

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And so those ableist language and terms like everyone's a bit dyslexic or,

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you know, everyone struggles with spelling. That's true.

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Everyone can struggle with spelling, but we actually have a difficulty that

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affects us with our spelling altogether.

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So we really need to redesign workplaces and classrooms and society in general to be more inclusive,

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where we can unlock the potential of our entire community that has really historically

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underestimated and undermined those with dyslexia.

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And for the first time, we're really looking at what adults want.

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We haven't had the opportunity in Australia.

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I'm not sure why we have the least amount of research in Australia on adulthood

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dyslexia, particularly compared to other neurodivergent differences.

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And this really needs to change. So I'll get off my soapbox and let's look at

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some strategies that can help us moving forward.

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So we need to dismantle ableist language.

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So superpower can be an ableist language, just like dumb, stupid, or lazy.

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And there's three actual ways we could start to do that. And that's through

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embracing strength-based labels.

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Instead of focusing solely on the deficits, let's highlight the strengths and

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unique ways dyslexic individuals approach problem-solving, lateral thinking.

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What made by dyslexia is created is a dyslexic thinking term that you can use on LinkedIn now.

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Whether that resonates with you or not, I'm not sure, but it really is trying

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to look at one of those positive terms.

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And for employers to really start to frame dyslexics and dyslexia as an asset

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to their organisation, not a challenge, because really when we've got the right

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supports in place, we are an

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asset to organisations and our research is starting to demonstrate that.

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Also, that we need to create psychologically safe environments in schools,

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in workplaces and beyond.

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Many participants shared experiences of shame or fear of disclosing their dyslexia,

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especially in the workplace.

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So by fostering open communication, offering accommodations without judgment,

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we can start to create environments where people feel safe to be their true, authentic selves.

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And that's what we want, is that everyone in society can be their true,

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authentic self and that it's okay to be different.

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And then educate and advocate constantly. What we're doing is educating and

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advocating, and this is what this research is doing.

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We need to start reducing the misconceptions about dyslexia that persist across society.

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Educators, employers and policymakers need to train, be trained to understand

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dyslexia beyond reading difficulties.

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They need to start recognising its diverse impacts from processing speed to

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working memory challenges to significant mental health challenges that we can

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face, burnout, poor self-esteem,

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lower overall well-being outcomes compared to the general population,

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higher rates of suicide attempts and anxiety and depression.

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All these things could be reduced if there was better understanding of how to

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support and work with dyslexic adults.

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So at the core of this research, it really highlights that labels are not just

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words, they're tools of power and used thoughtfully, they can validate experiences and open doors.

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Used carelessly, they can marginalise and exclude and cause significant harm to individuals.

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By listening to the voices of dyslexic adults, as this study has done,

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we can start to build a society that truly values those with dyslexia.

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And I think it really indicates the need to start having dyslexics at the table,

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whether it's a neurodivergent conversation, whether it's looking at the medical

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model, whether it's looking at policy change and what supports are in place.

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Dyslexics need to be at the table in the workplace and education.

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It's not just the parents now. We're moving beyond just parents into adulthood

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and dyslexic individuals need to be there.

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And we're not right now. We're not in the neurodivergent conversation.

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We're not in any policy change.

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There's no Senate inquiry into dyslexia. There's no dyslexia strategy being put together.

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And so government in particular really needs to start thinking about why is this happening?

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Why are we not there compared to other neurodivergent conditions?

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So to all the dyslexics listening today, thank you. your experience matters,

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your voice matters, and you are more than just your labels.

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And to our allies, it's time to rethink how we speak about and support dyslexics,

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because everyone deserves the opportunity to thrive, and we deserve to start

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being at the table, listened to, and included in these conversations.

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To find out more about the research paper, you can head to .com.au,

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and the research paper is available for you to download and read further.

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So once again thank you for listening and I look forward to speaking to you

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next month with our latest guest which will be Rob on dyscalculia.

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So that will be an exciting and interesting conversation to have around how

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we can better support young people and adults who have dyscalculia.

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So thank you for tuning in to this podcast around my research and let's continue

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to advocate, learn and build a more inclusive world together. Until then, bye for now.

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If you haven't done so already, make sure you sign up to our mailing list so

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you can keep up to date with everything we're doing at Rethink Dyslexia.

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So head to rethinkdyslexia.com.au and don't forget if there's anything you heard

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today that was distressing,

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you can contact Lifeline on 13 11 14 or Beyond Blue on 1300 22 46 36.

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Thanks for listening and bye for now.