Welcome to episode 2 of our podcast! Join the hosts Heidi Frost, Karen Kehdy, and Shija Sapru as they discuss the social and medical model of disability. They break down what each model means and how they impact the lives of neurodivergent individuals. Sometimes, a shift in perspective is important to create a society that is committed to inclusivity.

Tune in to learn, reflect, and start shifting the narrative together.

Transcript:

Shija Sapru:
Hello everyone! Welcome to the Neurodiversity MENA podcast. This is episode two. Why the social model of disability matters? I am Shija Sapru, she/her. Joining me today is Karen Kehdy and Heidi Frost. Through this podcast we hope to increase awareness on the topic of neurodiversity and change the way neurodivergence is perceived in our society. Today there is a dire need to shift the narrative.

Shija Sapru:
So let’s get started.

Karen Kehdy:
Yes, shifting the narrative that is at the core of what we’re doing right now right here. Hi, I’m Karen Kehdy, she/her. In our previous episodes, we spoke briefly about how neurodiversity strikes balance between both models – medical and the social model. Today we will break down what each model means and how they impact the neurodivergent individuals and why.

Karen Kehdy:
Changing perspective is really important and it matters. And why the social model of disability matters. But before we dive in, it’s important to discuss one important thing. Disability. Heidi, can you tell us why we’re talking about disability today?

Heidi Frost:
Yeah, sure. Hi, everybody. Heidi Frost, she/her. So we’re talking about disability for a few reasons. One, a lot of neurodivergent does come with co-occurring disabilities, so there’s a lot of overlap. Two, because if you, our audience are here because your child received a diagnosis, you were probably given the medical version of your child’s neurotype. And three, because neuro minorities are often disabled not by their neuro type or their neurology necessarily, they’re disabled by the systems that we humans build and the environments we curate, or just by society and culture itself.

 Heidi Frost:
Oh, and four because, for a less serious reason. Anybody can become disabled at any time. I love to be the bearer of good news, but disability invokes a lot of strong feelings, but it is just a part of being human. So I’m being a little overexaggerated there. So that idea that society itself or culture itself can disable people, that’s the basis for the social model of disability.

Heidi Frost:
That means that as the World Health Organization puts it, in accessible environments, create barriers that often hinder the full and effective participation of people in society. Notice I said people, not disabled people. The environments that we humans curate and the environments that our government systems, our building practices, our cultural practices, and all those other systems create, those are the biggest limiting factor on disabled people, not their their own disabilities.

Heidi Frost:
The environment. I also want to point out this does not just apply to people with physical disabilities. It’s also invisible disabilities. And regardless of your own abilities, society can disable you without you losing any physical or mental ability whatsoever. The easiest example of this is if someone labels you crazy or a town hall, for example, labels you crazy and kicks you out.

Heidi Frost:
You have become disabled by that society.

Karen Kehdy:
Yeah. And I feel it’s important also to highlight that, neurodiversity concept is outside these two models, the social and medical model. So when we say neurodiversity, it’s not equivalent to the social model of disability only. In other words, our world was created for the majority to function. And they always keep in mind what works for neurotypicals or the neuromajority.

Karen Kehdy:
The minority has often been excluded during the design process. And sometimes they were designs against, unfortunately. So for example, ramps, you know, ramps, the ramps are still non-existent in many parts of the world. And some cities they have like redesigned recently for the more wheelchair accessibility. And also this wheelchair accessibility has helped other forms of accessibility like strollers, for example.

Karen Kehdy:
So now strollers, shopping carts, everything is accessible.

Heidi Frost:
So yeah, exactly. The rising tide lifts all ships. And of course, even if we do design an accessible society, that doesn’t suddenly mean a deaf or like me, a hard of hearing person will suddenly be able to hear. That’s not what we’re saying. Or what that the social model of disability saying what it means is that deaf and hard of hearing people, often find that the problem it’s not with our deafness or our hearing loss, but rather with how people react to it and like how hard it is to get access to accommodations to things like interpreters, subtitle subtitles, closed captioning, audio description, and the like.

Heidi Frost:
The reason it’s hard to get access to those things is because of how we built the system, and how that system expects the accommodations to be accessed. So like how I’m expected to go ask for the closed captioning or the subtitle movie device at the movie theater. That can be a barrier in and of itself. It adds burden on me and how people who have control over those accommodations respond to us just existing.

Heidi Frost:
Because, like I, I’m not deaf. I’m hard of hearing, but I need the subtitles. So if someone is like, why are you asking for the subtitles? You’re clearly able to hear. So why does this matter? Deafness is a rather extreme example. We don’t generally think of the disabilities that co-occur with neurodiversity as being as disabling as deafness, but a lot of, you know, autistic, ADHD, Down’s syndrome and other neuro types, they often are also disabled.

Heidi Frost:
They report the same that the areas in which we lack ability. That’s not the problem. The problem is how people and systems respond to us. That’s by far what we would change first, as opposed to the things inside of ourselves.

Shija Sapru:
So it’s much like the medical model defines disability strictly from a lack of ability, and that lack of ability arises from the person’s body or mind. So it does not have the scope of helping us understand on what, in the physical environment or the social environment that actually impacts the individual. Right.

Karen Kehdy:
Yeah.

Heidi Frost:
Yeah. And well we like we need the medical model because it has been crucial in developing life saving treatments and advancing our understanding of our own condition. But that’s kind of where its usefulness ends. It’s not really useful everywhere else that we use it in society. Unless you get really lucky with your doctor. The medical model does tend to overlook the broader context that a person lives in.

Heidi Frost:
Like you know, your physical and social environment that can either hinder or support you in your everyday life.

Karen Kehdy:
I mean, we know that neurodivergent is most often diagnosed by medical professionals. They range from disabilities, disorders to differences like autism, ADHD, sensory processing disorder, learning differences, dyslexia like dyslexia, dyspraxia, and also co-occurring medical conditions like anxiety, depression and so much more. So these diagnoses come from a diagnostic manual through the understanding of a set of behaviors and the challenges which are benchmarked basically against the majority of population, which we’re referring to as neuromajority in our podcasts.

Karen Kehdy:
So often the plan of action suggested is intervention, early interventions and treatment that comes in the medical within the medical model of disability.

Heidi Frost:
Yeah. And that medicalization, the pathology solution turning a basic difference into a disease. And then trying to treat it like it is a disease when it’s not it’s not what the medical model should be used for. It’s not what it’s good at and it’s not what it was designed to do, but it’s what we use it for all the time, especially, you know, weaponized against minorities.

Karen Kehdy:
Yeah. And understanding these models, both models, it’s not just for academic purposes. It’s really important to know the real implications, the real world implications by these two models, the medical model, why it’s really important. It’s actually essential for medical care. And it can really contribute sometimes to stigma by defining people by their impairments. So in contrast, the social model encompasses or basically empowers the neurodivergent individuals to ask critical questions like what social barriers, for example, exist that prevent the full participation of neurodivergent individuals?

Karen Kehdy:
Are the policies and environments designed with inclusivity and neurodivergents in mind?

Heidi Frost:
Yeah. And is the system making assumptions about what disabled people can and can’t do, like especially a disability that’s not visible or in evidence like I’m hard of hearing. I need subtitles, but if you speak loudly to me, I can hear you. I don’t need an interpreter. I don’t need one yet.

Heidi Frost:
But the the medical model of disability is the predominant model of disability, and it’s the one most people think of. So it intrudes into everyday life constantly. And so another example, if someone’s had a leg amputation, most people do assume that the medical impacts are the most important thing to that disabled person. And certainly but getting mobility aids is medically and socially important to that person.

Heidi Frost:
The social model of disability does not say, well, they don’t need a wheelchair or to use medication, but society needs to reshape to fit them. That’s not what we’re saying or what the social model of disability is saying. What it’s saying is once they have their medication, they’re the mobility is all that we have to make sure that society isn’t adding barriers. 

Heidi Frost:
And the medical model of disability is important for addressing that part of difference or any other disability. And it’s the same with neurodivergence, different neurotypes have different medical needs, and it’s important to have those needs met. Another example, it’s important to have anxiety medication available for those who have it, have or who need it, to have therapy accessible.

Heidi Frost:
And the social model doesn’t deny any of that. But the medical model ends with the prescribed treatment, and that’s where the social model needs to take over.

Shija Sapru:
So we could explain the social model of disability as if we could embrace neurodiversity. Then the world around us could have more options that could help neurodivergent individuals function better. Now it shifts the focus from actually approaching just the individual to tweaking the environment and supporting the individual. Am I right?

Heidi Frost:
Yeah, exactly. Yeah. Like, once I have my anxiety meds, I don’t need a medicine that’s going to make me tolerate eye contact better. What I need is a society that can adapt to my eye contact needs. Currently, in my current society and culture, that mostly works. And that’s where the social model of disability comes in.

Heidi Frost:
So what that looks like with eye contact. So to give you the backstory, my brain rapidly shifts from thinking brain, the prefrontal cortex, to the survival brain, the brainstem. That’s where the fight, flight, freeze, fawn and response comes from that happen. I go from here to here when I’m forced to make eye contact. Nothing is ever going to change that.

Heidi Frost:
While my brain stays in survival mode, I can’t access critical thinking like at all. Very little. I’ve gotten better at that, but there’s no nothing that’s going to make that easier. There’s no therapy that’s going to rewire my brain so that I can stay up in the prefrontal cortex. And most societies don’t actually need changes to adapt to eye contact needs fully.

Heidi Frost:
Eye contact, after all, is very cultural. There’s a lot of people who don’t even notice whether I’m making eye contact or not, because it’s actually not very hard to look at the general direction of someone and no one really notices. But there are some systems and environments that I might find it much harder to have my eye contact needs met for an example, and this might apply to a lot of the audience is children.

Heidi Frost:
If I were a child again today in school and not making much eye contact, it’s pathologized. It’s seen as a symptom of a disease and my life gets a lot harder. I didn’t grow up with that, but it’s. That’s how the schools are now. I’m suddenly disabled by the school system. If I’m a child now, and the people within it are trying to get me to make more eye contact.

Heidi Frost:
My abilities haven’t changed from back when I was a child to now. Like, that’s not changed at all. But because I’m suddenly in that school environment being seen as pathologized, I’m disabled, I become disabled. On top of that, my, you know, my behavior, my brain, my needs have been like it turned into a disease. It’s been pathologized.

Shija Sapru:
So? So the neurodiversity concept actually stands against pathologizing our differences, our needs. So, as Heidi mentioned that the medical model often ends in the prescribed treatment for the disability, but the neurodivergent individuals still struggle to function. So hence the social model of disability actually matters. Because first, we need to think of how we could redesign the environments like our schools, workplaces and other community spaces.

Shija Sapru:
And second, how can we change the attitudes so that the differences are being embraced and not being pitied? Now think about our classrooms, for example. It is designed, by keeping in mind the neuronormative standards of having everybody sit on their chairs, front of their desk, and to listen to the teachers. Yes. Now, imagine if the classrooms were designed as a standard practice with flexible seating, maybe a swing for a swing movement.

Shija Sapru:
It could be beanbags so that, they could have the comfort of sitting that way. What about standing desk that people could stand and listen to it, listen to the teacher. And it could be even having a quiet section in the room where you can actually crouch and sit. So these are options. If we could have it might cater to many neurodivergent and individuals with invisible disabilities as well.

Shija Sapru:
So the medical model can recommend and say provide a speech language pathologist support and say that, yes, you need, speech language pathologist sessions, but that doesn’t actually negate the need for alternative forms of communication. If the school is not going to support sign language or give you text to speech or speech to text options, they are not being neuroaffirming. That will actually be neglecting the, the child to be educated when they could actually be learning with the support of alternative and augmentative communication methods, as you call AAC or even other assistive tech options.

Shija Sapru:
So an inclusive education policy should address not just the physical accessibility in school, but should be having a robust and flexible curriculum and should be able to recognize the cultural and cognitive diversity and can accommodate a variety of learning needs. This is what we call by social model of disability, and it does not mean that we disown the medical model.

Shija Sapru:
We need both models of disability for neurodivergent individuals to thrive.

Karen Kehdy:
Absolutely, absolutely, Shija. We definitely need both models. If all workplaces embrace the concept of neurodiversity. It would be also really good for business. I mean, neurodiversity would promote, healthy team dynamics and it will promote the employee wellbeing. So, I mean, no one not neurodivergent, none. None of the neurodivergent individuals, they feel disabled by his or her cognitive difference.

Karen Kehdy:
People with mental health also conditions often face barriers not only because of their mental health condition or because of their like. It’s not alone. This is the only barrier but because also of societal stigma and the lack of, supportive practices and policies in the workplace, if they if their places of work or the communities around them prove to be more inclusive, more accommodating by recognizing these mental health, for example, mental health days.

Karen Kehdy:
You know, just like we have a one sick day, we might have a mental health day encouraging counseling at, at the work, providing remote or flexible working hours. Then I think these disabling effects can significantly reduce, and it will really help the neurodivergent individual reach their full potential at work and thrive rather than just survive the workplace.

Shija Sapru:
So now we can imagine, just like how I explain the classrooms. What if workspaces also can be very creative in their spaces? It could facilitate better sensory and emotional regulation. Just imagine a wide variety of tools in the office space also with flexible seating options or even having dual screen, text to speech or speech to text options there too, ergonomic office furniture, or even having the standard operating procedures right in written, visual or even video format and visual schedules.

Shija Sapru:
Daily planners using clear and precise language so that everyone can reach their truest potential.

Heidi Frost:
I would love that. That would be someone better. Don’t make me guess. Dear God. So yeah, the social model also recognizes that disability does not exist in a vacuum. You know, factors like race, gender, socioeconomic status, cultural background, those all interact with our neurotypes and our disabilities. To make something that would be easy to work around into an actual disability is actually disabling when it wasn’t before.

Heidi Frost:
And that interaction is why we need intersectionality when we’re discussing this. Oh yeah, another term I get to define I love them. So for those who don’t know, intersectionality is just that idea that I explain that different aspects of a person’s identity such as race, gender, neurodivergent, etc., interact to create unique experiences of discrimination or privilege.

Heidi Frost:
That’s all intersectionality is, the medical model can’t really do anything with that. That’s it’s not useful. It should be aware of it, but it’s not very good at dealing with that. It doesn’t have the tools, but the social model does. And just like a lot of marginalization, disability, disability is not inherently something bad. It’s, the perception that it’s bad.

Heidi Frost:
And the way we’re treated, that is usually what makes it more disabling than the actual lack of ability. And just to restate, because I love to say it, I love to remind everyone. Anybody can become disabled at any time and probably will at some point in our lives. This impacts everybody, not just the disabled minority.

Heidi Frost:
So we can all benefit by doing something about this. And it’s not just to be pejorative, like to be nice or charitable or to, like, virtue signal. You know, we’re not just being, like, kind to us poor, unfortunate disabled souls. We do need the medical model still to help us with our actual real medical problems.

Heidi Frost:
But, you know, we want to leave that in the medical context. Context is, I think, what the message here is, the social model is what we need everywhere else our schools, our daily lives, our workplaces, our infrastructure, our our society, everywhere else.

Karen Kehdy:
Yeah. The challenge that lies ahead for all the communities, schools, workplaces, government, social, any, public places. Also, it’s in basically harnessing the strengths of both models, social and medical model. So the medical advances are definitely vital for the development of the human race, but also building inclusive environments, neuroinclusive environments that ensure that everyone has the opportunity to flourish in our society.

Karen Kehdy:
I mean, after all, the social model of disability, the social model of disability is what lays the foundation of, neuro affirming practices. More about that also will be in our next episode.

Shija Sapru:
Yeah. Thank you so much, Karen. Thank you. Heidi. If you enjoyed listening to our episode, please, please share with your friends and family or anybody who wants to learn more about neurodiversity. You can follow us on Spotify, Apple Podcasts, YouTube, wherever you listen to your podcast. Our website www.neurodiversitymena.com, and our socials are also a great way to learn more about this topic.

Shija Sapru:
Thank you and see you next time!

Heidi Frost:
Bye!

References:

• ⁠  ⁠https://neurodivergentinsights.com/medical-vs-social-model/
• ⁠  ⁠https://www.disabilitywales.org/social-model/

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