The funny thing about disability… actually no, sorry. That’s an appalling way to start a blog about disability. Let’s try that again. The strange thing about disability is that I thought I understood it. Not perfectly, obviously. But well enough to be able to join in a conversation about it.
If somebody had asked me a few years ago what disability looked like, I’d have given a pretty confident answer. I’d have talked about wheelchairs, white sticks and accessible parking spaces. The things most of us instinctively picture because they’re the examples we see most often. If somebody had handed me a piece of paper and said, “Quick, draw a disabled person,” I’d probably have reached for exactly the same mental image as a lot of people do. But I’m confident I wouldn’t have drawn someone without any visible signs of what we have come to understand disability to be.
And that wouldn’t have been through any lack of caring or need to be dismissive. Well… not consciously anyway. I just wouldn’t, at that point, have questioned what I thought I knew. And if we’re honest, that’s probably true of most of us. We tend not to examine our understanding of something until life gives us a reason to. And that’s exactly what happened to me.
Three years ago, or there abouts, was the beginning of my health starting to change rather dramatically. And I found myself having to navigate a world I hadn’t expected to become part of. Around the same time, I also started learning more about neurodivergence, accessibility and inclusion, and suddenly conversations I’d never really paid much attention to started making an awful lot more sense.
As my knowledge grew, and my thoughts evolved around this stuff, I realised it wasn’t that I’d been completely wrong. It was more that I’d only been looking at a really teeny part of a much bigger picture. Once I had realised that I couldn’t stop seeing all the bits I had been missing.
Who gets to decide what’s normal?
One of the things I found myself doing after my health changed was reading. A lot. Like a ‘forget to eat whilst you go down a long and winding rabbit hole of obsessive deep research until your eyeballs start to twitch’ level of reading.
I’d been dropped, Alice in Wonderland style, into a world I hadn’t expected to inhabit, and my instinct was to get ‘pro-level expert’ at understanding it all. So, I found myself reading about invisible disability, neurodivergence, accessibility, the Equality Act…amongst other things. Basically, ANYTHING that helped me make sense of what was happening.
At one point I stumbled across the legal definition of disability in the Equality Act. It describes disability as an impairment that has a substantial and long-term adverse effect on your ability to carry out “normal day-to-day activities.”
It’s a perfectly sensible legal definition. But WTAF is normal day-to-day activities. The more I’ve learnt about disability, the more suspicious I’ve become of the word normal.
There are common experiences and shared expectations, for sure. But normal? That feels rather dependent on whose life you’re looking at. For one person, a normal day might involve commuting into London, spending eight hours in a busy office, going to the gym afterwards and meeting friends for dinner. For somebody else, a normal day might involve pacing themselves carefully enough to get dressed, make lunch and still have enough energy left to enjoy an hour in the garden. Neither of those lives is more normal than the other. They’re just different.
That overly generic definition gave me the rage which fuelled a shift in my thinking. Instead of wondering whether people could do what society considered “normal”, I questioned why we’re asking everybody to experience the same world in exactly the same way. By doing that we’re creating unnecessary barriers, and the last thing disabled people need is that extra layer of bullshit. Once I’d seen that, I couldn’t stop seeing examples of those barriers everywhere.
The exhausting business of looking fine
Another thing the previous version of myself had been missing was invisible disability. I realise I’d been making exactly the same assumptions that many people still make now with me. Not because I was stupid, but because invisible disabilities are, rather inconveniently, invisible. By their very nature they are going out of their way to not be found.
Add the invisible element to something you’ve never had to think about before, and your brain quietly fills in the blanks. In the absence of there being nothing obviously visually to latch on to. If somebody sees a wheelchair, a pair of crutches or another visible physical impairment, most people instinctively understand that there will be barriers for that person. They might not know exactly what those barriers are, but they recognise that adjustments could be needed.
Invisible disability doesn’t come with the same advantage. If somebody sees me walking into a meeting, smiling, holding a conversation and clutching a cup of coffee like it’s life support (it is!), they more often than not assume they’ve seen the full picture. That’s how all of our brains work. We gather information from what we can see and then build a story around it.
The trouble is that we’re remarkably confident in those stories, even when we’ve only been given about twenty percent of the information. It’s a bit like watching the first ten minutes of a film and deciding you already know exactly how it ends. Occasionally you’ll get lucky. Most of the time you’ll be completely wrong.
What people don’t see is the constant mental arithmetic happening quietly in the background. I’m wondering how far I’ll need to walk, whether there will be somewhere to sit, how much energy something is likely to require, whether I’ll still be paying for it three days later, and whether saying yes to this means saying no to something else tomorrow.
And to be fair… why would they? Most of us don’t walk around giving strangers a running commentary on our nervous system. Imagine that conversation.
“Morning! Lovely weather. By the way, my nerve pain is on fire, my brain has decided today isn’t the day for processing information properly, and there’s a reasonable chance I’ll need a lie down in the imminent future.”
We don’t all do that. Partly because it’s personal. Partly because it would make for some fairly unusual small talk (and no one likes small talk at the best of times!). But also, because there can be a surprising amount of shame attached to admitting that you’re finding everyday things difficult. So, we become incredibly good at looking okay. Sometimes so good that people forget there was ever anything to manage in the first place.
I think that’s one of the reasons invisible disabilities can feel so complicated. Not because they are somehow less real, but because there is often an unspoken assumption that if people can’t see the struggle, then perhaps it isn’t really there.
Nobody says it quite so bluntly, of course. Instead, it appears disguised as comments like:
“But you don’t look disabled.”
“Well, you managed it last time.”
“You seem fine.”
The first time somebody said something along those lines to me, I remember thinking how strange it was. I also remember briefly wanting to throw them into the sea before immediately recognising that this was probably a slight overreaction. They weren’t trying to be cruel. They were simply working with the information they had and didn’t know they needed to look deeper.
But it did make me wonder what they expected disability to look like. Was I supposed to arrive with a warning light on my head? Wear a ‘special’ badge, or maybe some sort of high-vis vest that reads: “Warning: appearances may be wildly misleading.”
The reality is that pain doesn’t have a particular look. Fatigue doesn’t. Brain fog certainly doesn’t. Neither does sensory overwhelm, and any of the other things that are very real, but not visually obvious. Yet we’d somehow come to expect disability to announce itself before we’d believe it existed.
Incoming analogy — It’s a bit like watching somebody carry an incredibly heavy suitcase up a flight of stairs and deciding it obviously can’t have been that heavy because they managed it. You’ve seen the outcome, but you’ve completely missed the effort it took to get there.
It was whilst trying to make sense of all of this stuff that I stumbled across something that completely changed the way I understood disability. For the first time, I came across the Social Model of Disability. Giant lightbulb moment!
The day disability started making sense
The first time I read about the Social Model of Disability it unsettled me. Not because I disagreed with it. Quite the opposite in fact. I was annoyed because it had taken me this long to find out about it. Why had nobody explained it to me three years earlier!?
It’s one of those ideas that, once it’s pointed out, it’s ridiculously obvious. And you feel stupid for not working it out already. Like one of those annoying 3D puzzle pictures that made all of our eyeballs and brains hurt in the 90’s. Where you’ve been staring at the same image for ages, pretending to know what it is, but refusing to share it with anyone else. As you have no clue. Then suddenly your older brother blurts out “it’s a rabbit” and suddenly it’s all you can see. From that moment on, your brain simply refuses to unsee it.
That was exactly what happened to me with the Social Model. Up until then, I’d always assumed disability was largely about the individual. If somebody was struggling, then surely the answer sat somewhere within them. Their condition. Their diagnosis. Their symptoms. Their ability to cope. It wasn’t a belief I’d consciously chosen. I’d simply absorbed it over the years because often that’s how disability is talked about.
The Social Model flips that whole idea upside down. Instead of immediately asking what’s wrong with the person, it asks “what barriers are getting in their way?”
That shift in language changes absolutely everything. At the beginning of my disability journey (that sounds like a trip you wouldn’t want to go on!) I’d been trying to solve the wrong problem. I’d spent too long assuming the environment was fixed and I was the variable. It hadn’t really occurred to me at all that the environment deserved a little scrutiny too. Once the switch was flicked in my brain, disability felt less like a conversation just about limitations, and more about accessibility.
It wasn’t just about what somebody could or couldn’t do. It was also about whether the world around them had been designed with them in mind in the first place. They’re two very different ways of looking at exactly the same situation. And once I’d seen the difference, I noticed it everywhere.
The staircase that changed everything
One of the examples that’s often used to explain the Social Model is a ‘staircase’. It’s brilliantly simple, because it’s so visual. Which is one of the reasons it has stuck with me.
Imagine two people arriving at the same building. A building that has a large flight of stairs into it. One walks straight up the stairs without giving the entrance a second thought. The other can’t get in because stairs simply aren’t an option for them.
For years, I suspect I’d have instinctively focused on the individual in this scenario. How do we help them? What support do they need? What adjustments can we make for them?
But the Social Model asks a completely different and much better question. Why is there only one way into the building? Why wasn’t accessibility considered when the building was designed? Why are we automatically treating the person as the problem when the entrance itself is creating the barrier?
The more I thought about it, the more I realised that this wasn’t really a story about staircases at all. Sometimes the barrier genuinely is a staircase. Sometimes it can be a workplace designed around the assumption that everybody thrives in a noisy open-plan office. Sometimes it’s harsh lighting, inaccessible transport, rigid working hours or communication styles that only work well for one type of brain. In every example, the condition is exactly the same. The person is exactly the same. The thing that’s changed is the environment around them.
That simple shift in thinking also helped me understand something else: the difference between equality and equity. I appreciate this feels a little like I’m schooling my readers at this point, but when I find out useful stuff there is no option in my brain to do anything but share it. Helpful in this case…hopefully. But less so the time I went on a deep dive about crocheting.
Sorry, I digress. Back to the subject in hand. Focus Hannah..
Equality says everybody gets exactly the same staircase. Which sucks if you can’t do stairs. But Equity stops to ask whether everybody can actually get into the building.
They sound remarkably similar (literally 2 extra letters. Who thought that was a good idea?), which meant that my brain confused them both for quite some time. But they’re very different ideas. One treats everybody identically. The other recognises that different people sometimes need different things to reach exactly the same goal.
I’d heard those words countless times before, but suddenly they stopped being abstract concepts and started making perfect sense. And, inconveniently, once I’d understood that, I started seeing metaphorical staircases absolutely everywhere.
Invisible barriers are still barriers
I think this is one of the reasons the Social Model is so relatable to me. After spending years thinking accessibility was largely about ramps, lifts and accessible parking spaces. All of which are incredibly important, by the way. I started examining my own needs and saw how accessibility is also about lighting, noise, communication, flexibility, predictability and all the invisible things that make one person’s day perfectly manageable and another person’s feel like they’ve accidentally entered the Hunger Games.
And it’s easier to miss those invisible things (I’m not doing that joke twice), because they are harder for the majority of people to relate to. So, accessibility conversations centre more around the more physically obvious adaptations. They’re visible. They’re tangible. They make sense to us. We don’t often hear people talking about sensory environments, communication styles or the mental effort involved in constantly adapting yourself to systems that were designed with somebody else in mind.
As somebody who lives with both invisible health conditions and a neurodivergent brain, I really get how important the conversations are around the invisible barriers too. Because they are still very real, and equally debilitating.
There have been countless situations throughout my life where the challenge wasn’t actually the task itself. It was everything surrounding it. The noise. The sensory input. The expectations. The lack of flexibility. The assumption that everybody should be able to do things in exactly the same way, at exactly the same speed, with exactly the same resources available to them. For years, I simply assumed I needed to try harder.
Looking back, I can now see how many of those situations were made more difficult than they ever needed to be because nobody stopped to ask whether the environment was actually working for me. The onus was very much on me. It was a “me” problem.
That’s the bit that really sticks with me. It isn’t pretending that impairments, illnesses or disabilities don’t exist. Of course they do. My health hasn’t magically improved simply because I understand disability differently. What has changed is the way I understand the relationship between my body and the world around it. And the extra kindness I afford myself based on that knowledge.
I completely understand that sometimes the biggest barrier genuinely is our health. Sometimes it’s the environment. More often than not, it’s a complicated combination of both. The difference is that the Social Model doesn’t automatically place all of the responsibility on the individual to somehow overcome every barrier they encounter. It asks whether there are things society, workplaces, organisations and communities could do differently too. And that’s a much kinder place to begin than automatically assuming the problem always sits with the person.
Why Disability Pride Month matters
I’ll admit the first time I heard the phrase Disability Pride, I wasn’t entirely sure how I felt about it. I think, like a lot of people, I misunderstood what it meant.
The word pride sounded oddly celebratory. Like “hurray, we can’t do stuff”, which felt really weird when there are many aspects of disability I wouldn’t choose to celebrate. Chronic pain isn’t exactly on my list of hobbies. Fatigue isn’t something I’m hoping to collect more of. Likewise, there are parts of being neurodivergent that can be exhausting, frustrating and genuinely difficult to manage.
So, the phrase made me pause, and pull a deep thinking confused face. A slightly disapproving visual ‘harumph’. But the more I listened to disabled people talking about Disability Pride, the more I realised I’d misunderstood it. Because It wasn’t about celebrating disability. It was about refusing to be ashamed of it.
Disabled people spend a ridiculous amount of time trying to become the least inconvenient version of themselves. Trying not to ask for too much. Trying not to need too much. Trying not to take up too much space. Trying not to make anybody else feel awkward or uncomfortable.
That ‘trying’ is something I recognise from so many conversations around neurodivergence. Around chronic illness. Around mental health. Around almost anything that makes somebody feel like they don’t quite fit the mould. There’s often an unspoken pressure to become easier. To accommodate, to understand, to ignore. And when I considered that I realised that pride isn’t really the opposite of struggle. It’s the opposite of shame.
If somebody has spent years being made to feel like they’re too much, too complicated or too inconvenient simply because the world wasn’t built with them in mind, then perhaps pride isn’t such a strange word after all. It feels like exactly the right one to me.
What if we’ve been asking the wrong question?
One of the biggest surprises over the last few years hasn’t been learning more about my own health but realising just how much my understanding of disability has changed.
Like many people, I started with a fairly simple picture of what disability was because I’d never really had reason to question it. Then life came along, added a few unexpected plot twists, and suddenly I found myself looking at the whole subject through a completely different lens.
The Social Model didn’t magically make my health conditions disappear, but it changed the questions I started asking. I became more interested in what barriers might be getting in the way, and whether the biggest barrier was my health or the world around me. Sometimes the answer was my health. Sometimes it was an expectation, an environment or a system that simply hadn’t been designed with me in mind. And often it was a mixture of things.
Knowing what I know now, I think we’d all benefit from asking those questions more often. Because, as a society, we’ve become surprisingly comfortable defining people by the things they find difficult.
We’d never introduce somebody by saying,
“This is Sarah. She’s terrible at parallel parking.”
Or,
“This is Dave. He can’t cook to save his life, and he’ll bore you to death on the topic of angle grinders, given half the chance.”
Those things might be true, but they tell us almost nothing about who those people actually are. Yet somehow, when it comes to disability, we can end up doing exactly that. We reduce wonderfully complicated human beings to the list of things they struggle with, rather than seeing the whole person standing in front of us.
I don’t want people to pretend my disabilities don’t exist. They’re part of my life, and sometimes they’re incredibly difficult. But they’re also only one part of my life.
I’m also a business owner.
A podcast host.
A wife.
A mum.
A daughter
A friend.
A woman who’s slightly too enthusiastic about analogies and will almost certainly buy another item of clothing she doesn’t need on Vinted before you’ve finished reading this blog.
Disability is part of who I am. It just isn’t the whole story. And perhaps that’s what Disability Pride Month is really inviting us to remember. Not that disability should be ignored. Not that struggle doesn’t exist. But that people have always been so much bigger than the labels we give them.
So perhaps the question isn’t, “What’s wrong with this person?” but “What barriers are we asking them to navigate that we haven’t even noticed?”. Because once you start asking that question….you stop seeing disability. And you start seeing people.
The funny thing about disability… actually no, sorry. That’s an appalling way to start a blog about disability. Let’s try that again. The strange thing about disability is that I thought I understood it. Not perfectly, obviously. But well enough to be able to join in a conversation about it.
If somebody had asked me a few years ago what disability looked like, I’d have given a pretty confident answer. I’d have talked about wheelchairs, white sticks and accessible parking spaces. The things most of us instinctively picture because they’re the examples we see most often. If somebody had handed me a piece of paper and said, “Quick, draw a disabled person,” I’d probably have reached for exactly the same mental image as a lot of people do. But I’m confident I wouldn’t have drawn someone without any visible signs of what we have come to understand disability to be.
And that wouldn’t have been through any lack of caring or need to be dismissive. Well… not consciously anyway. I just wouldn’t, at that point, have questioned what I thought I knew. And if we’re honest, that’s probably true of most of us. We tend not to examine our understanding of something until life gives us a reason to. And that’s exactly what happened to me.
Three years ago, or there abouts, was the beginning of my health starting to change rather dramatically. And I found myself having to navigate a world I hadn’t expected to become part of. Around the same time, I also started learning more about neurodivergence, accessibility and inclusion, and suddenly conversations I’d never really paid much attention to started making an awful lot more sense.
As my knowledge grew, and my thoughts evolved around this stuff, I realised it wasn’t that I’d been completely wrong. It was more that I’d only been looking at a really teeny part of a much bigger picture. Once I had realised that I couldn’t stop seeing all the bits I had been missing.
Who gets to decide what’s normal?
One of the things I found myself doing after my health changed was reading. A lot. Like a ‘forget to eat whilst you go down a long and winding rabbit hole of obsessive deep research until your eyeballs start to twitch’ level of reading.
I’d been dropped, Alice in Wonderland style, into a world I hadn’t expected to inhabit, and my instinct was to get ‘pro-level expert’ at understanding it all. So, I found myself reading about invisible disability, neurodivergence, accessibility, the Equality Act…amongst other things. Basically, ANYTHING that helped me make sense of what was happening.
At one point I stumbled across the legal definition of disability in the Equality Act. It describes disability as an impairment that has a substantial and long-term adverse effect on your ability to carry out “normal day-to-day activities.”
It’s a perfectly sensible legal definition. But WTAF is normal day-to-day activities. The more I’ve learnt about disability, the more suspicious I’ve become of the word normal.
There are common experiences and shared expectations, for sure. But normal? That feels rather dependent on whose life you’re looking at. For one person, a normal day might involve commuting into London, spending eight hours in a busy office, going to the gym afterwards and meeting friends for dinner. For somebody else, a normal day might involve pacing themselves carefully enough to get dressed, make lunch and still have enough energy left to enjoy an hour in the garden. Neither of those lives is more normal than the other. They’re just different.
That overly generic definition gave me the rage which fuelled a shift in my thinking. Instead of wondering whether people could do what society considered “normal”, I questioned why we’re asking everybody to experience the same world in exactly the same way. By doing that we’re creating unnecessary barriers, and the last thing disabled people need is that extra layer of bullshit. Once I’d seen that, I couldn’t stop seeing examples of those barriers everywhere.
The exhausting business of looking fine
Another thing the previous version of myself had been missing was invisible disability. I realise I’d been making exactly the same assumptions that many people still make now with me. Not because I was stupid, but because invisible disabilities are, rather inconveniently, invisible. By their very nature they are going out of their way to not be found.
Add the invisible element to something you’ve never had to think about before, and your brain quietly fills in the blanks. In the absence of there being nothing obviously visually to latch on to. If somebody sees a wheelchair, a pair of crutches or another visible physical impairment, most people instinctively understand that there will be barriers for that person. They might not know exactly what those barriers are, but they recognise that adjustments could be needed.
Invisible disability doesn’t come with the same advantage. If somebody sees me walking into a meeting, smiling, holding a conversation and clutching a cup of coffee like it’s life support (it is!), they more often than not assume they’ve seen the full picture. That’s how all of our brains work. We gather information from what we can see and then build a story around it.
The trouble is that we’re remarkably confident in those stories, even when we’ve only been given about twenty percent of the information. It’s a bit like watching the first ten minutes of a film and deciding you already know exactly how it ends. Occasionally you’ll get lucky. Most of the time you’ll be completely wrong.
What people don’t see is the constant mental arithmetic happening quietly in the background. I’m wondering how far I’ll need to walk, whether there will be somewhere to sit, how much energy something is likely to require, whether I’ll still be paying for it three days later, and whether saying yes to this means saying no to something else tomorrow.
And to be fair… why would they? Most of us don’t walk around giving strangers a running commentary on our nervous system. Imagine that conversation.
“Morning! Lovely weather. By the way, my nerve pain is on fire, my brain has decided today isn’t the day for processing information properly, and there’s a reasonable chance I’ll need a lie down in the imminent future.”
We don’t all do that. Partly because it’s personal. Partly because it would make for some fairly unusual small talk (and no one likes small talk at the best of times!). But also, because there can be a surprising amount of shame attached to admitting that you’re finding everyday things difficult. So, we become incredibly good at looking okay. Sometimes so good that people forget there was ever anything to manage in the first place.
I think that’s one of the reasons invisible disabilities can feel so complicated. Not because they are somehow less real, but because there is often an unspoken assumption that if people can’t see the struggle, then perhaps it isn’t really there.
Nobody says it quite so bluntly, of course. Instead, it appears disguised as comments like:
“But you don’t look disabled.”
“Well, you managed it last time.”
“You seem fine.”
The first time somebody said something along those lines to me, I remember thinking how strange it was. I also remember briefly wanting to throw them into the sea before immediately recognising that this was probably a slight overreaction. They weren’t trying to be cruel. They were simply working with the information they had and didn’t know they needed to look deeper.
But it did make me wonder what they expected disability to look like. Was I supposed to arrive with a warning light on my head? Wear a ‘special’ badge, or maybe some sort of high-vis vest that reads: “Warning: appearances may be wildly misleading.”
The reality is that pain doesn’t have a particular look. Fatigue doesn’t. Brain fog certainly doesn’t. Neither does sensory overwhelm, and any of the other things that are very real, but not visually obvious. Yet we’d somehow come to expect disability to announce itself before we’d believe it existed.
Incoming analogy — It’s a bit like watching somebody carry an incredibly heavy suitcase up a flight of stairs and deciding it obviously can’t have been that heavy because they managed it. You’ve seen the outcome, but you’ve completely missed the effort it took to get there.
It was whilst trying to make sense of all of this stuff that I stumbled across something that completely changed the way I understood disability. For the first time, I came across the Social Model of Disability. Giant lightbulb moment!
The day disability started making sense
The first time I read about the Social Model of Disability it unsettled me. Not because I disagreed with it. Quite the opposite in fact. I was annoyed because it had taken me this long to find out about it. Why had nobody explained it to me three years earlier!?
It’s one of those ideas that, once it’s pointed out, it’s ridiculously obvious. And you feel stupid for not working it out already. Like one of those annoying 3D puzzle pictures that made all of our eyeballs and brains hurt in the 90’s. Where you’ve been staring at the same image for ages, pretending to know what it is, but refusing to share it with anyone else. As you have no clue. Then suddenly your older brother blurts out “it’s a rabbit” and suddenly it’s all you can see. From that moment on, your brain simply refuses to unsee it.
That was exactly what happened to me with the Social Model. Up until then, I’d always assumed disability was largely about the individual. If somebody was struggling, then surely the answer sat somewhere within them. Their condition. Their diagnosis. Their symptoms. Their ability to cope. It wasn’t a belief I’d consciously chosen. I’d simply absorbed it over the years because often that’s how disability is talked about.
The Social Model flips that whole idea upside down. Instead of immediately asking what’s wrong with the person, it asks “what barriers are getting in their way?”
That shift in language changes absolutely everything. At the beginning of my disability journey (that sounds like a trip you wouldn’t want to go on!) I’d been trying to solve the wrong problem. I’d spent too long assuming the environment was fixed and I was the variable. It hadn’t really occurred to me at all that the environment deserved a little scrutiny too. Once the switch was flicked in my brain, disability felt less like a conversation just about limitations, and more about accessibility.
It wasn’t just about what somebody could or couldn’t do. It was also about whether the world around them had been designed with them in mind in the first place. They’re two very different ways of looking at exactly the same situation. And once I’d seen the difference, I noticed it everywhere.
The staircase that changed everything
One of the examples that’s often used to explain the Social Model is a ‘staircase’. It’s brilliantly simple, because it’s so visual. Which is one of the reasons it has stuck with me.
Imagine two people arriving at the same building. A building that has a large flight of stairs into it. One walks straight up the stairs without giving the entrance a second thought. The other can’t get in because stairs simply aren’t an option for them.
For years, I suspect I’d have instinctively focused on the individual in this scenario. How do we help them? What support do they need? What adjustments can we make for them?
But the Social Model asks a completely different and much better question. Why is there only one way into the building? Why wasn’t accessibility considered when the building was designed? Why are we automatically treating the person as the problem when the entrance itself is creating the barrier?
The more I thought about it, the more I realised that this wasn’t really a story about staircases at all. Sometimes the barrier genuinely is a staircase. Sometimes it can be a workplace designed around the assumption that everybody thrives in a noisy open-plan office. Sometimes it’s harsh lighting, inaccessible transport, rigid working hours or communication styles that only work well for one type of brain. In every example, the condition is exactly the same. The person is exactly the same. The thing that’s changed is the environment around them.
That simple shift in thinking also helped me understand something else: the difference between equality and equity. I appreciate this feels a little like I’m schooling my readers at this point, but when I find out useful stuff there is no option in my brain to do anything but share it. Helpful in this case…hopefully. But less so the time I went on a deep dive about crocheting.
Sorry, I digress. Back to the subject in hand. Focus Hannah..
Equality says everybody gets exactly the same staircase. Which sucks if you can’t do stairs. But Equity stops to ask whether everybody can actually get into the building.
They sound remarkably similar (literally 2 extra letters. Who thought that was a good idea?), which meant that my brain confused them both for quite some time. But they’re very different ideas. One treats everybody identically. The other recognises that different people sometimes need different things to reach exactly the same goal.
I’d heard those words countless times before, but suddenly they stopped being abstract concepts and started making perfect sense. And, inconveniently, once I’d understood that, I started seeing metaphorical staircases absolutely everywhere.
Invisible barriers are still barriers
I think this is one of the reasons the Social Model is so relatable to me. After spending years thinking accessibility was largely about ramps, lifts and accessible parking spaces. All of which are incredibly important, by the way. I started examining my own needs and saw how accessibility is also about lighting, noise, communication, flexibility, predictability and all the invisible things that make one person’s day perfectly manageable and another person’s feel like they’ve accidentally entered the Hunger Games.
And it’s easier to miss those invisible things (I’m not doing that joke twice), because they are harder for the majority of people to relate to. So, accessibility conversations centre more around the more physically obvious adaptations. They’re visible. They’re tangible. They make sense to us. We don’t often hear people talking about sensory environments, communication styles or the mental effort involved in constantly adapting yourself to systems that were designed with somebody else in mind.
As somebody who lives with both invisible health conditions and a neurodivergent brain, I really get how important the conversations are around the invisible barriers too. Because they are still very real, and equally debilitating.
There have been countless situations throughout my life where the challenge wasn’t actually the task itself. It was everything surrounding it. The noise. The sensory input. The expectations. The lack of flexibility. The assumption that everybody should be able to do things in exactly the same way, at exactly the same speed, with exactly the same resources available to them. For years, I simply assumed I needed to try harder.
Looking back, I can now see how many of those situations were made more difficult than they ever needed to be because nobody stopped to ask whether the environment was actually working for me. The onus was very much on me. It was a “me” problem.
That’s the bit that really sticks with me. It isn’t pretending that impairments, illnesses or disabilities don’t exist. Of course they do. My health hasn’t magically improved simply because I understand disability differently. What has changed is the way I understand the relationship between my body and the world around it. And the extra kindness I afford myself based on that knowledge.
I completely understand that sometimes the biggest barrier genuinely is our health. Sometimes it’s the environment. More often than not, it’s a complicated combination of both. The difference is that the Social Model doesn’t automatically place all of the responsibility on the individual to somehow overcome every barrier they encounter. It asks whether there are things society, workplaces, organisations and communities could do differently too. And that’s a much kinder place to begin than automatically assuming the problem always sits with the person.
Why Disability Pride Month matters
I’ll admit the first time I heard the phrase Disability Pride, I wasn’t entirely sure how I felt about it. I think, like a lot of people, I misunderstood what it meant.
The word pride sounded oddly celebratory. Like “hurray, we can’t do stuff”, which felt really weird when there are many aspects of disability I wouldn’t choose to celebrate. Chronic pain isn’t exactly on my list of hobbies. Fatigue isn’t something I’m hoping to collect more of. Likewise, there are parts of being neurodivergent that can be exhausting, frustrating and genuinely difficult to manage.
So, the phrase made me pause, and pull a deep thinking confused face. A slightly disapproving visual ‘harumph’. But the more I listened to disabled people talking about Disability Pride, the more I realised I’d misunderstood it. Because It wasn’t about celebrating disability. It was about refusing to be ashamed of it.
Disabled people spend a ridiculous amount of time trying to become the least inconvenient version of themselves. Trying not to ask for too much. Trying not to need too much. Trying not to take up too much space. Trying not to make anybody else feel awkward or uncomfortable.
That ‘trying’ is something I recognise from so many conversations around neurodivergence. Around chronic illness. Around mental health. Around almost anything that makes somebody feel like they don’t quite fit the mould. There’s often an unspoken pressure to become easier. To accommodate, to understand, to ignore. And when I considered that I realised that pride isn’t really the opposite of struggle. It’s the opposite of shame.
If somebody has spent years being made to feel like they’re too much, too complicated or too inconvenient simply because the world wasn’t built with them in mind, then perhaps pride isn’t such a strange word after all. It feels like exactly the right one to me.
What if we’ve been asking the wrong question?
One of the biggest surprises over the last few years hasn’t been learning more about my own health but realising just how much my understanding of disability has changed.
Like many people, I started with a fairly simple picture of what disability was because I’d never really had reason to question it. Then life came along, added a few unexpected plot twists, and suddenly I found myself looking at the whole subject through a completely different lens.
The Social Model didn’t magically make my health conditions disappear, but it changed the questions I started asking. I became more interested in what barriers might be getting in the way, and whether the biggest barrier was my health or the world around me. Sometimes the answer was my health. Sometimes it was an expectation, an environment or a system that simply hadn’t been designed with me in mind. And often it was a mixture of things.
Knowing what I know now, I think we’d all benefit from asking those questions more often. Because, as a society, we’ve become surprisingly comfortable defining people by the things they find difficult.
We’d never introduce somebody by saying,
“This is Sarah. She’s terrible at parallel parking.”
Or,
“This is Dave. He can’t cook to save his life, and he’ll bore you to death on the topic of angle grinders, given half the chance.”
Those things might be true, but they tell us almost nothing about who those people actually are. Yet somehow, when it comes to disability, we can end up doing exactly that. We reduce wonderfully complicated human beings to the list of things they struggle with, rather than seeing the whole person standing in front of us.
I don’t want people to pretend my disabilities don’t exist. They’re part of my life, and sometimes they’re incredibly difficult. But they’re also only one part of my life.
I’m also a business owner.
A podcast host.
A wife.
A mum.
A daughter
A friend.
A woman who’s slightly too enthusiastic about analogies and will almost certainly buy another item of clothing she doesn’t need on Vinted before you’ve finished reading this blog.
Disability is part of who I am. It just isn’t the whole story. And perhaps that’s what Disability Pride Month is really inviting us to remember. Not that disability should be ignored. Not that struggle doesn’t exist. But that people have always been so much bigger than the labels we give them.
So perhaps the question isn’t, “What’s wrong with this person?” but “What barriers are we asking them to navigate that we haven’t even noticed?”. Because once you start asking that question….you stop seeing disability. And you start seeing people.