intro: Hello there and welcome to the Dear Dyslexic podcast series brought to you by
intro: Rethink Dyslexia, the podcast where we're breaking barriers and doing things differently.
intro: I'm Shea Wissell, your host, and I'm so glad you can join us.
intro: I'm a fellow neurodivergent and I'm coming from the lands of the Rwundjeri people of the Kulin Nation,
intro: where I live and work, and I would like to acknowledge and pay my respects to
intro: all the tribes across our beautiful country and to all First Nations people listening today.
intro: Our podcast was born in 2017 out of a need to give a voice to the stories and
intro: perspectives of adults with dyslexia.
intro: And our voice has grown stronger year after year.
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intro: So let's get started.
episode: Hi everyone and welcome to our latest episode of the Dear Dyslexic Podcast show.
episode: I'm your host, Shea Wissell.
episode: And today we're going to be taking a bit of a different approach where I'm going
episode: to be talking about my research.
episode: And so throughout this year, we're going to shake it up a little bit with having
episode: me doing some podcasts on my own and then bringing guests on.
episode: But I recently had published my research titled, I Hate Calling It a Disability,
episode: Looking at Dyslexia Through an Intersectional Lens.
episode: And this research follows the work I've done through my doctorate.
episode: And so I wanted to share it with you today because it's a really lengthy paper
episode: and I wouldn't be very dyslexic friendly if I just shared the paper and I didn't
episode: give some type of summary around the research as well.
episode: Previously, we've done some infographics, but today I thought I'd use the opportunity
episode: to use the podcast to talk about the research and this paper.
episode: And really, it's a powerful look into how labels can impact our self-perception
episode: and the inclusion of dyslexics within society.
episode: It was co-authored by Dr Judith Hudson, one of my mentors who works closely
episode: with me, Dr Rebecca Flower from La Trobe University, and then one of my peers,
episode: Bill Goh, who is a dyslexic PhD student.
episode: And what we wanted to do was bring a fourth person in that could look at it
episode: from a lived experience perspective and review it from a dyslexic perspective
episode: so we didn't just have researchers writing this paper.
episode: So let's take a bit of a deep dive into what this paper actually means for our
episode: dyslexic community and society as a whole.
episode: Firstly, let's understand the background. So for those of you who are listening
episode: that may not know about dyslexia or what it is, it affects one in 10 of us.
episode: In the US, they say it affects one in five, so really quite high prevalence rates.
episode: And it makes up the largest, at the moment, the largest neurodivergent group.
episode: So if we're thinking about other neurodivergent groups like autism or ADHD.
episode: Those with autism make up about one to two percent of the population at the moment.
episode: Those with ADHD make up around five to eight percent and then dyslexics are
episode: making up one in ten or one in five.
episode: Prevalence rates are changing all the time. We're seeing lots of adults being
episode: diagnosed at the moment with autism, ADHD and also dyslexia.
episode: So at the moment we're the leading neurodivergent difference but this may change over time.
episode: Yet for many dyslexia still remains really misunderstood and often overshadowed
episode: by misconceptions and other neurodevelopmental differences and still a lot of
episode: stigma attached to being dyslexic.
episode: So this research took a qualitative approach where we interviewed adults with
episode: dyslexia and employers separately, so not their employers but other employers,
episode: to understand how labels like disability,
episode: neurodivergence, superpower influenced those with dyslexia's lives.
episode: So one of the key take-homes is that labels really do matter.
episode: Participants overwhelmingly felt and rejected the term disability and not because
episode: they don't face significant challenges or different challenges but because the
episode: term often carries stigma and discrimination.
episode: For some the label felt limiting, forcing them into a box that didn't align
episode: with their complex realities and also didn't really talk about their strengths.
episode: One participant said that I hate
episode: calling it a disability it's society's barriers, not me, that disable me.
episode: And this perspective really aligns with the social model of disability,
episode: which argues that it's not an individual's traits that disable them,
episode: it's society's lack of accommodations and supports.
episode: Think about it, if workplaces, schools and communities embrace diverse ways
episode: of thinking and learning, dyslexia might not be perceived as a limitation at all.
episode: But what about the other side of the spectrum.
episode: The idea that dyslexia is a superpower. This label is gaining significant traction
episode: at the moment and we've seen recent campaigns by Made by Dyslexia who are emphasizing
episode: the strengths like lateral thinking and problem solving that those with dyslexia can have.
episode: And we're seeing this big movement particularly on social media at the moment
episode: around these terms of superpower.
episode: Yet this research highlighted that most dyslexic adults did not resonate with
episode: the term superpower either.
episode: They acknowledged that they had strengths like resilience, creativity and empathy.
episode: But many saw these as coping mechanisms developed over time to navigate a world
episode: that isn't dyslexia friendly.
episode: So not innate superpowers that we're born with, but skills that we develop because
episode: we're constantly having to use them to navigate our way around the world.
episode: One participant shared, I built strengths out of necessity, not because of magical abilities.
episode: These perspectives remind us to celebrate strengths, but without romanticising
episode: or ignoring the very real challenges that dyslexic individuals face.
episode: And we found that these types of labels may marginalise those with dyslexia
episode: who are really struggling day to day with their difficulties,
episode: who don't have functional reading skills, who can't fill out forms,
episode: who can't get a job or are being underemployed because of their dyslexia when
episode: really they've got a high amount of skills.
episode: That they could be using. And so this is part of society's need to start changing
episode: the way we look and think about dyslexia.
episode: Also out of the research, we looked at the intersectional lens and that's looking
episode: at how power can play in an individual's life and the impact that we may have
episode: on what a power structure might look like.
episode: And so we looked at this through the power of labels placed on individuals with dyslexia.
episode: So for those that see dyslexia as a superpower, they seem to be the ones in
episode: high profile careers or high profile jobs. They're at the top of their career ladder.
episode: And so it doesn't affect them if they disclose they're dyslexic anymore.
episode: It doesn't impact their financial ability. It doesn't impact their job role
episode: or their career opportunities.
episode: And so they're the ones sitting up at the higher point of that hierarchy.
episode: And then if we think of the medical model where we're diagnosed with a disability
episode: or difficulty, and that's through specialists or health practitioners.
episode: Again, so there's that power dynamic of a medical model where a practitioner
episode: is telling you you've got this disability now based on the DSM-5,
episode: which is a diagnostic mental health psychiatry disorders. I've got that wrong.
episode: We'll put it up so you can read it.
episode: But the DSM-5 is what diagnoses us as having dyslexia or a specific learning
episode: disability or difficulty in the first place.
episode: And then if we think about that from a power structure, again,
episode: you know, when we're in school, the teacher has all the power, the student doesn't.
episode: And then when we're in the workplace, the employer has the power to place these
episode: labels on us rather than us being able to own and really identify with these labels.
episode: So we're looking at the different power structures involved.
episode: And that's something that hasn't really been looked at before and was a really
episode: interesting part of the research that we undertook as well when writing this paper.
episode: I think also the fact that when we interviewed employers, they really saw dyslexia again,
episode: if you're thinking about power as a real strength in the workplace,
episode: that they could see how dyslexic employers could be real value or an asset to
episode: an organisation because of the different ways of thinking and doing things and
episode: the way they can contribute.
episode: But these employers had exposure to dyslexia through their children or a family member already.
episode: So they could already understand the difficulties those employees were facing
episode: and they already knew the kinds of compensatory strategies and supports that
episode: they could in to really enable their dyslexic employees to thrive and shine in the workplace.
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episode: So the third label we wanted to look at was really this neurodivergence label
episode: that's come about in the last couple of years, particularly on social media.
episode: Neurodiversity has been around for a long time. It was coined by Judy Singer,
episode: looking at the strengths that autistic people in her family had and coming from
episode: a strength-based model rather than a deficit model. And that to neurodiversity.
episode: We need diversity in everything we do from biodiversity to the workplace,
episode: to education, to society.
episode: If we don't have diversity, then we can't grow and learn and thrive.
episode: And that's what we see in the environment. If you look at biodiversity,
episode: we take some mixture of plants and animals and the environment to enable things
episode: to thrive. And that's what we need as a community as well. So really strength-based.
episode: And then over the last five years, we've seen this neurodivergent movement comes
episode: through in this label where we say everyone in the world is diverse,
episode: we're all neurodiverse, but then those that are neurodivergent or have dyslexia
episode: or autism or AD, we diverge off the diverse.
episode: And that means that we have a different way of thinking to the general population.
episode: And again, looking at those strengths around the different ways of thinking and doing things.
episode: And so what we've seen is this huge push, particularly
episode: through the autistic community and now the ADHD community to
episode: really take hold of this neurodivergent label
episode: but we're also seeing it watered down because multiple conditions
episode: and differences are now being placed under this label we've got
episode: bipolar we've got mental health conditions and differences we've
episode: got neurodevelopmental differences and so
episode: what we're seeing is then if everyone's put
episode: under this big umbrella then our difficulties are
episode: not supported properly because we're saying okay that group
episode: of people in our workplace are neurodivergent so they just need
episode: a quiet space low lighting you know and
episode: we put these particular labels then
episode: on what they may need when dyslexics really need a different
episode: type of supports to those that are autistic or those that are adhd but we also
episode: know that these conditions overlap significantly and so if you're dyslexic there's
episode: a high chance that you might have adhd or you might have autism and so some
episode: of these strategies will work for the broader group but there's also specific
episode: strategies that are needed to ensure that dyslexics are thriving in the workplace.
episode: And so we don't want to get lost. What our research found was the dyslexic community
episode: wasn't really embracing the neurodiversity or neurodivergence label either.
episode: They weren't feeling part of that community. And that at the moment,
episode: it feels like we don't really have a broader community to be part of.
episode: And that the neurodivergent conversation has really been centered around autism
episode: and ADHD when it's so much broader than that.
episode: And we need to start thinking in the workplace more broadly than those two conditions.
episode: So where do we go from here? The research really makes a compelling case for
episode: rethinking the different labels altogether and what we're seeing through social
episode: media and what we're seeing in the news and globally around these different labels.
episode: For those with dyslexia, identity first language like saying I am dyslexic rather
episode: than I have dyslexia was empowering but they use both terms interchangeably
episode: and so sometimes when I go to speak people say it's not dyslexia it's a specific
episode: learning difficulty or a specific learning difference.
episode: And yes, that's the label used in the DSM-5, but what are adults and what are
episode: individuals wanting to use for themselves?
episode: And at the moment, dyslexic and dyslexia seem to be the most common.
episode: Most comfortable terms for them to be using at the moment. So we can't take that away from them.
episode: That is their preference. So whether you're an education employer,
episode: a parent, you have to let that individual choose what label is most suitable
episode: and most comfortable for them in their skin.
episode: So the choice of language may seem small but it has a ripple effect and employers
episode: and educators can adopt these terms to foster environments where dyslexic individuals
episode: feel valued and understood and this isn't just good for dyslexics, it's good for everyone.
episode: When we challenge ableist language like we've talked about and what we saw in the research.
episode: So dumb, stupid, try harder, not find detailed enough.
episode: We had one participant ask what it was like to have an intellectual disability
episode: and some really negative labels that were placed on our participants from a young age.
episode: And those labels were sticky and they stuck to them. And as they progressed into adulthood,
episode: they still had those labels, feelings attached to them so we could see the impact
episode: that this had on self-esteem and self-confidence and people's ability to then
episode: be able to self-advocate if they're going to and disclose because if they're
episode: going to disclose the fear of those labels coming back
episode: and resurfacing is really, is a real fear for people and is a real challenge
episode: and a real stigma that we have to try and break through.
episode: And so those ableist language and terms like everyone's a bit dyslexic or,
episode: you know, everyone struggles with spelling. That's true.
episode: Everyone can struggle with spelling, but we actually have a difficulty that
episode: affects us with our spelling altogether.
episode: So we really need to redesign workplaces and classrooms and society in general to be more inclusive,
episode: where we can unlock the potential of our entire community that has really historically
episode: underestimated and undermined those with dyslexia.
episode: And for the first time, we're really looking at what adults want.
episode: We haven't had the opportunity in Australia.
episode: I'm not sure why we have the least amount of research in Australia on adulthood
episode: dyslexia, particularly compared to other neurodivergent differences.
episode: And this really needs to change. So I'll get off my soapbox and let's look at
episode: some strategies that can help us moving forward.
episode: So we need to dismantle ableist language.
episode: So superpower can be an ableist language, just like dumb, stupid, or lazy.
episode: And there's three actual ways we could start to do that. And that's through
episode: embracing strength-based labels.
episode: Instead of focusing solely on the deficits, let's highlight the strengths and
episode: unique ways dyslexic individuals approach problem-solving, lateral thinking.
episode: What made by dyslexia is created is a dyslexic thinking term that you can use on LinkedIn now.
episode: Whether that resonates with you or not, I'm not sure, but it really is trying
episode: to look at one of those positive terms.
episode: And for employers to really start to frame dyslexics and dyslexia as an asset
episode: to their organisation, not a challenge, because really when we've got the right
episode: supports in place, we are an
episode: asset to organisations and our research is starting to demonstrate that.
episode: Also, that we need to create psychologically safe environments in schools,
episode: in workplaces and beyond.
episode: Many participants shared experiences of shame or fear of disclosing their dyslexia,
episode: especially in the workplace.
episode: So by fostering open communication, offering accommodations without judgment,
episode: we can start to create environments where people feel safe to be their true, authentic selves.
episode: And that's what we want, is that everyone in society can be their true,
episode: authentic self and that it's okay to be different.
episode: And then educate and advocate constantly. What we're doing is educating and
episode: advocating, and this is what this research is doing.
episode: We need to start reducing the misconceptions about dyslexia that persist across society.
episode: Educators, employers and policymakers need to train, be trained to understand
episode: dyslexia beyond reading difficulties.
episode: They need to start recognising its diverse impacts from processing speed to
episode: working memory challenges to significant mental health challenges that we can
episode: face, burnout, poor self-esteem,
episode: lower overall well-being outcomes compared to the general population,
episode: higher rates of suicide attempts and anxiety and depression.
episode: All these things could be reduced if there was better understanding of how to
episode: support and work with dyslexic adults.
episode: So at the core of this research, it really highlights that labels are not just
episode: words, they're tools of power and used thoughtfully, they can validate experiences and open doors.
episode: Used carelessly, they can marginalise and exclude and cause significant harm to individuals.
episode: By listening to the voices of dyslexic adults, as this study has done,
episode: we can start to build a society that truly values those with dyslexia.
episode: And I think it really indicates the need to start having dyslexics at the table,
episode: whether it's a neurodivergent conversation, whether it's looking at the medical
episode: model, whether it's looking at policy change and what supports are in place.
episode: Dyslexics need to be at the table in the workplace and education.
episode: It's not just the parents now. We're moving beyond just parents into adulthood
episode: and dyslexic individuals need to be there.
episode: And we're not right now. We're not in the neurodivergent conversation.
episode: We're not in any policy change.
episode: There's no Senate inquiry into dyslexia. There's no dyslexia strategy being put together.
episode: And so government in particular really needs to start thinking about why is this happening?
episode: Why are we not there compared to other neurodivergent conditions?
episode: So to all the dyslexics listening today, thank you. your experience matters,
episode: your voice matters, and you are more than just your labels.
episode: And to our allies, it's time to rethink how we speak about and support dyslexics,
episode: because everyone deserves the opportunity to thrive, and we deserve to start
episode: being at the table, listened to, and included in these conversations.
episode: To find out more about the research paper, you can head to .com.au,
episode: and the research paper is available for you to download and read further.
episode: So once again thank you for listening and I look forward to speaking to you
episode: next month with our latest guest which will be Rob on dyscalculia.
episode: So that will be an exciting and interesting conversation to have around how
episode: we can better support young people and adults who have dyscalculia.
episode: So thank you for tuning in to this podcast around my research and let's continue
episode: to advocate, learn and build a more inclusive world together. Until then, bye for now.
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outro: So head to rethinkdyslexia.com.au and don't forget if there's anything you heard
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outro: Thanks for listening and bye for now.