Well hello there! It’s been a minute! You know when things get in the way and something gets pushed to the bottom of your list, then as more time passes it seems like a much bigger thing than it actually is, so you put it off some more? Yeah, that happened. But this is a topic that’s really important to me and I thought it deserved a bit more context and in depth explanation than an Instagram word limit, so I’m back on the blogging train.

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Something I’ve come to realise is, when you’re disabled, you seem to automatically get put in the ‘brave and inspiring’ box if you’re seen to live your life with even an ounce of cheerfulness. You’re praised for your ‘can do’ attitude if you do literally anything at all.

Society rejoices at you taking a walk/roll down the street ‘despite your disability’, and every achievement or sign of independence is categorised as ‘overcoming’ it.

You’re touted as being ‘one of the good ones’, like there’s a wrong way to be Disabled. As if the only way a disabled person should be is a ray of sunshine who is visibly seen to be trying to access the world, even if that world is utterly unwelcoming.

I’ve been praised for going outside on the farm and helping where I can, even just blocking a gap in a gateway, with words like “if only the rest of them were like you and put the effort in”.

And yet, I am also ‘the rest of them’. The people others make judgments about, and I’ve been on the receiving end of those judgments and cruel assumptions.

I’ve spent years of my life housebound, bedbound for some of them. Years where I didn’t leave my bedroom at all, and to the outside world, looked like I wasn’t trying. I simply wasn’t well enough to be seen and so people assumed I wasn’t working hard enough. The truth was, none of it was within my control or down to effort, and still isn’t.

I still spend 90% of my day in my home, mostly in my bedroom doing various forms of resting, so if those same people who praise me for being out and about saw me for those times, I feel like they’d be confused about what category to place me in. Would the 9 hours spent inside cancel out the 1 hour of visibly participating in the outside world or of doing some kind of work to contribute to it? They’d probably be surprised to learn that those ‘inside hours’ are the times when my mental strength and resilience is tested the most. The times I leave the house aren’t because I’m fighting harder, they’re because my condition, and my privileges with having mobility aids and people to cover my responsibilities and look after me while I contend with the recovery from whatever I’m doing, have allowed me to.

I’ve spent countless hours trying to figure out how to get this across to people in a succinct way, to try and avoid misleading anyone. But I’ve learnt that just existing as a disabled person, either in person or online, means people are going to assign a narrative to you depending on their own views, and all the over-explaining and disclaimers in the world isn’t going to give you full control of every story.

If I could change just one narrative though…

It would be for people to please not use me as their poster girl for why a disability can’t stop you. Everything I do is with my disability, not in spite of it, and at times it very much does stop me, and that’s okay.

Instead, I wish they’d use me as their poster girl for why it should be the norm to meet every disabled person’s access needs and make society accessible to them, so they have the choice to do whatever they are capable of and wish to do. 

Everyone has access needs, we’re just not used to meeting most disabled people’s.

Being disabled is an identity I’m proud to have, we are a resilient, adaptable, diverse community living in a world that would rather try and ‘fix’ us than accommodate us. For me, I don’t feel like I’m fighting my disability, or trying to overcome it, I’m simply living with it. I do feel like I’m fighting society’s barriers though, including people’s attitudes and opinions.

So, why shouldn’t the narrative be about overcoming disability?

The Social Model of Disability is built around the idea that people are disabled by society and the barriers within it, including physical environments, attitudes, the ways people communicate, discrimination, and how organisations and institutions are run, and if the world was fully accessible and inclusive, we wouldn’t be as excluded or restricted and would have more independence, choice and control over our lives.

It changes the focus from ‘remove the condition/impairment/difference’ to ‘remove the barriers’. A common way of explaining it is if a building has a step so a disabled person who can’t use stairs can’t access it, recognising that’s a problem with the building, not the person, and that adding a ramp or a lift would remove that barrier.

I think it’s important to note that not every disabled person uses it and it’s up to the individual to choose how they want to describe their disability, but if you’re looking at disability from an outside perspective, I feel like using the social model when discussing it is a good place to start.

For some of us who are disabled due to energy-limiting conditions, the outside world and everyone in it could be as accessible and inclusive as humanly possible and our conditions would still keep us locked away from it because we aren’t well enough to leave our house, or work, study or socialise from home. Because of that, I’ve never felt like the social model fully applies to my own life, but as I’ve learnt more about it, I’ve come to realise it isn’t meant to describe every disabled person’s individual experiences, that would be impossible with there being 16 million of us in the UK alone, but as more of a broader explanation of disabled people’s experiences in society.

The barriers the model mentions aren’t only applicable to the outside world, there are plenty within our homes and lives which could be removed to give us more independence and agency. For example, the option to receive (good quality) medical care at home could be available to everyone, instead of it being a postcode lottery, and whatever mobility aids, disability living aids, home adaptations, and care we need could be provided to us, to make our days even just 5% less restricted.

Sometimes, that 5% is the difference between continuing to decline and finding some stability, so you can try and build a life within your circumstances instead of just fighting to survive. I can’t help wondering, how many have that opportunity taken away from them because it’s currently down to whether you have the privilege or finances to access the things that would give you a better quality of life? Scope, a disability equality charity, found disabled households face an average of £975 a month in extra costs, that’s a lot of money that not everyone can afford.

Disabled people don’t need to be told we can do anything we set our minds to, we need to know that we are going to have access to the support we need to do whatever it is we want to, or need to, do; whether that’s participating in a marathon, catching a train, or having a shower. We need society to be truly inclusive, and provide the adaptations and adjustments we need to thrive instead of constantly having to be locked out of 99% of the rooms, both metaphorically and physically. And I feel that starts by always expecting us to exist, and recognising we all have different access needs and are all equally valuable members of society who deserve to have those needs met.

What can we do to change things?

You might be reading this as a non-disabled person and thinking “so what can I do that could make society more inclusive and remove some of the barriers?”

Some good places to start are looking at the things you do in your own life and seeing what barriers are there for disabled people with all different types of impairments.

Is there step-free access to the shops on your local high street, and are there dropped curbs in the right places? Is there easy to read guides on how to use the equipment at your gym and somebody on hand to give someone with an intellectual disability a tour? Is the menu at your favourite café available in large font or braille? Do you use alt text, image and video descriptions, and subtitles on all yours or your business’ social media content, do you warn about flashing lights in videos and use contrasting colours? If you have a business where you are inviting the public to come to you, is all your accessibility information on your website and promotional material, instead of a disabled person specifically having to ask for it?

If any of the answers are no, you could suggest these and any other accessibility measures are put in place. Then, the next time a disabled person wants to access those things, they don’t have to wonder whether they’d be welcome there.

Some good places to get more information about accessibility measures are:

• Euan’s Guide have fantastic articles sharing top tips on how to make your venue more accessible, and you can list your business there and see examples of other businesses
• Scope’s interactive tool
• Visit Britain’s page on marketing your accessibility features
• Gov.uk’s accessibility posters