Pumpkin carvings

Casserole and Tasty Soup

Had some lovely times spent with my bunnies, Tasty Soup and Casserole this week. It’s not always easy to get clips of them and they’re a lot of work, but its little bits of time spent like this that makes it all worth it.

Red emergency cords. A plea for help.

Red emergency cord tied to a railing

Please don’t do this. If you see it done, please untie it if you’re able, and if you’re comfortable doing so report it to a member of staff.

Red alarm cords like this in disabled toilets and changing rooms (I believe this is only a UK thing) must be hanging freely and the end should be no more than 10cm off the floor.

If it’s tied up like this it can mean people in emergency situations, having had falls, seizures, or otherwise be in trouble can be delayed in getting assistance. 

Having highlighted this a lot, I’ve learned these cords make some people nervous, like they’ll pull it accidentally or something and so they’ll move it where they won’t be at risk of it happening.

If that ever happens to you don’t move it out of the way! Just be aware of where the small orange button is in the room. It’s a reset button, it turns the alarm back off if it’s triggered. It’s also worth remembering that setting it off is not always a bad thing, it tests the protocols they have in place for such an emergency, if any.

If you find you see red emergency cords in disabled toilets/changing tied up or lifted off the floor a lot, you can get sent cards to attach to them to let people know of their importance. They’re free in the UK from Euan’s Guide. Applying them to cords can help spread awareness and ultimately let people get the help they need when they need it.

Please don’t do this. If you see it done, please untie it if you’re able, and if you’re comfortable doing so report it to a member of staff. Red alarm cords like this in disabled toilets and changing rooms (I believe this is only a UK thing) must be hanging freely and the end should be no more than 10cm off the floor. If it’s tied up like this it can mean people in emergency situations, having had falls, seizures, or otherwise be in trouble can be delayed in getting assistance. Having highlighted this a lot, I’ve learned these cords make some people nervous, like they’ll pull it accidentally or something and so they’ll move it where they won’t be at risk of it happening. If that ever happens to you don’t move it out of the way! Just be aware of where the small orange button is in the room. It’s a reset button, it turns the alarm back off if it’s triggered. It’s also worth remembering that setting it off is not always a bad thing, it tests the protocols they have in place for such an emergency, if any. If you find you see red emergency cords in disabled toilets/changing tied up or lifted off the floor a lot, you can get sent cards to attach to them to let people know of their importance. They’re free in the UK from Euan’s Guide. Applying them to cords can help spread awareness and ultimately let people get the help they need when they need it.

I am not here to inspire you.

Content note: mentions of suicide, racism, ableism, fatphobia.

Inspiration. That’s quite a powerful word, isn’t it? To be inspired is such a marvellous feeling, to be made to want to do something, to create something, to be someone, to be something. But does it always do that? When you’re inspired, do you always feel motivated or is it just a feel good sensation, a little pick me up of mental warmth before carrying on the day?

I’m a disabled person, and it comes as a surprise to many but there is no word I find more insulting than ‘inspiring’. There is a depth to it that a lot of people fail to understand, one that leeches our lived experiences and patronises us under the guise of being complimentary.

In my world, with my body, to be an inspiration is not to inspire a person. It doesn’t motivate anyone to do anything. For me to be an inspiration is to make people glad they’re not me, to be used as a yardstick for their own lives and to condescend and pity about what it is they think my life, ability, and experiences to be.

Disability is a part of my life whether I want it to be or not. There is no ‘despite everything’, or ‘even though you’re disabled’, everything I do is with disability as a part of it. It is my default existence, who I am. I am a disabled person and I have accepted it with no expectation or desire to ‘overcome’ it, and it took a very long time to get there.

Inspiration in terms of disability is usually couched in that kind of language. Of overcoming, of doing things ‘despite it all’. I was told recently how ‘inspiring’ it is that I take selfies, that I can show pride in my appearance even though I’m going through so much. Smiling for the camera and carrying on living. Isn’t that so wonderful?

What does that really mean though? I was told by someone it was complimentary and I should accept it as such, that the person probably thought ‘well I hope I can manage as well if I end up like that’. End up like what, though? Disabled? Is my life really such a terrible thing that it can be boiled down to ‘I hope I can still smile and like myself if my life gets that bad’? The person paying the ‘compliment’ had no idea the scale of my disability. I asked a few questions and it quickly became clear they don’t know my daily life or my struggles. It was simply that they’d seen me in a chair. They’d projected their ideas of what being disabled means for me, what my experience with it must be like. Such a terrible existence, great that I can still smile and feel good about my appearance. Truly an inspiration to them.

I was a swimmer for some time, aiming to compete and training with people who are both disabled and able bodied. I would repeatedly be told how inspiring it was that I could do it, that I would push myself and could be motivated ‘even though’ I’m a disabled person. People would express to me that they had ‘no excuse not to’ if I could do it, as if my being there in the first place was somehow so completely different to them and the default was inability or simply giving up. I was a yardstick for them. ‘If someone like you can do it, I have no excuse!’ and if I could do it better they clearly just weren’t trying hard enough, because how could someone like me possibly outpace them?

It was rare that I was told my skill in the water was impressive, or that my motivation to swim and the time I spent in the water truly inspired anyone to actually get out there and swim, just that it was amazing and ‘inspiring’ that I’d be able to do it in the first place. That a disabled person was there, doing this normal thing. It didn’t matter that I was doing it as well, if not better than many other people were, ability rarely came into it, just disability. “You’re just like a normal person”, said one woman last spring. Begins to sound a bit patronising, eh?

I’ve been told my ability to paint is inspiring too. I do abstract acrylic paintings of particle trails, mostly when I’m in some of my worst mental health crises. I have to tape up my hands with micropore to prevent dislocations and clicking joints while holding the brushes. Falling apart is my default state, it’s just how it is and while it might cause pain it doesn’t stand out to me all that much. That’s just life, you adapt.

The paintings themselves, I will arrogantly and proudly state, are beautiful. I put so much time and emotion into them and it’s rare I get to the last brush stroke and don’t feel a pang of relief, of pride, that I’ve created something so majestic. Can you guess one of the first receptions I ever had to one of them? Inspiring. Not that they want to go out there and do something artistic, there was no comment on the image itself or compliment that I’ve had the imagination to create something like it, no. It’s because I did it, despite it all.
The backgrounds are inspired by images shared by NASA and the foreground is clean lines inspired by some of the building blocks of our very existence. Now that’s inspiration.

These are things in my life that bring me great pride and they’re boiled down to my physicality, or more precisely my perceived failure of it. Imagine how it feels when some of your greatest works, rather than being praised for what they are, are boiled down to ‘wow it’s amazing you can do that when your body is like that‘. It’s like being given a special achievement award for everything you do, but never getting the chance to have your work thrown out there into wider society and be judged on its own merits.

The same ‘special achievement’ award is given for some of the most basic daily tasks. I’ve been praised for going to the shops, for going out and getting on with my life, by strangers. I’ve been called ‘inspiring’ for it and encouraged to carry on. For buying food. These, again, aren’t people who know my life or any of the difficulties I face, nor the particulars of my disability. They have seen me in a chair or with a cane and projected their idea of what living with a disability is like, decided it must be terrible and difficult and that buying a tin of beans is truly an achievement for me. But what’s the alternative? Sit at home and simply exist? Never buy food? Starve to death or get someone else to do things that I’m perfectly capable of doing myself?

If this is my life then what choice do I have?

The special achievement category goes well beyond me. Take Stephen Hawking as an example. While he’s praised for his immense work in assisting us in understanding the universe, very often his achievements are put in that same little niche category of not really getting the credit it deserves on merit alone. ‘It’s so inspiring he could achieve so much despite his disability’.

It didn’t affect his ability to think or work on complex problems, yet his achievements and legacy are very often reduced by a persistent need to add the caveat of physicality, rather than simply saying how incredible that work was and allow it to speak for itself. At the time of his death it was repeatedly said how he was ‘now free’, as if being disabled is being trapped, burdened, it’s not just a thing you live with but a personal prison that holds you back. His legacy dismantles that very idea and yet it continues, with depictions of him floating out of his chair and through the pearly gates, finally freed from the chair that allowed him independence.

‘Inspiring’ also takes on other visages. It seems that not a week goes by when some poor unsuspecting person in a wheelchair or with other obvious needs is covertly snapped being helped to cut up their food, to cross a road, or to lift something off a shelf that’s too high. Each time it’s the same word. “Inspiring”. These viral images of us aren’t raising awareness of anything, they don’t make people more likely to interact with us in a world where ableism is rife beyond words, it’s ‘awww, the poor disabled person needs help’ and a saviour coming along to assist a person perceived as otherwise incapable of performing the task themselves. It ceases to be about the disabled person. We’re simply a device there for the aforementioned saviour to jump in and save the day.

How do you think it feels, as a person who needs their food cut up, to know you could become a spectacle of pity and warm happy-feels that someone would be so benevolent as to help if you needed it? I need help regularly to cut up my food and, when in public, would rather struggle through and attempt to hold my cutlery and hurt myself then accept help out of fear someone may secretly try and snap a picture of poor incapable me.

Those feelings of pity rarely translate to people actually humanising us, but rather the opposite. As I say, we’ve become a device to project ideas of inability onto, to scapegoat or to prop up the image of others. I say the world is rife with ableism because truly it is incredible the attitude people have towards us that they do not even realise are so negative. Those covert snaps aren’t restricted to people patronising us in viral tweets, they also have a flip side.

I’m an ambulatory wheelchair user. I’m able to stand up and walk short distances but it’s difficult, it hurts, and I’m at risk of falling. I was once in a supermarket and, unable to reach something off a shelf and too embarrassed to ask for help, I stood up. Someone down the aisle got out their phone and attempted to take a photo. These kinds of things end up in tabloids with jokes about miracles and talk of fakers or people clearly not needing chairs, once again projecting an image of disability that just doesn’t stack up to the reality for so many of us, and furthering the idea that many disabled people are faking it for social security benefits.

If I have to stand from my wheelchair I know people will stare, I loudly exclaim “it’s a miracle” and look around at those people in order to shift the atmosphere to one that makes it clear their attention is unwelcome.

I would personally rather go out in my wheelchair and not stand, struggling with ramps and getting assistance from my husband with small steps, than risk standing and becoming the object of ridicule for a perception of my disability which is based on nothing but my very existence. If I stand I’m at great risk of falling and I know from experience there won’t always be someone on hand who’d be willing to help me up. But at the same time I fear if people knew I was staying in my chair when I could stand for short periods in order to avoid personal embarrassment, suspicion, or injury, I’d be targeted for ‘playing up’ my disability. You cannot get it right.

Last year I was chased down a high street with a man yelling about how I’m a scrounger, we’re all fakers. I hadn’t stood up, he knew nothing about me, simply saw me in a chair. I dread to think the attitude I could face if such a person saw me get to my feet.

The ‘faker’ rhetoric is one that has deeply injured the mental health of so many and changed perceptions of us as a whole in society. The above experience is extremely common, I’ve had it more than just the once. When I shared my experiences on social media many other people with visible disabilities chimed in with experiences of their own that are frighteningly similar. People being yelled at, notes on windscreens about people not truly needing blue badge because they don’t look disabled. I once had a letter written to my local newspaper about me and they printed it! It exclaimed that two young people in a red sports car were clearly misusing a blue badge. Because you can’t be disabled and also be young, and be carted around in a fancy looking car?

When disability is brought up it’s very often followed by a discussion about how so many people ‘scam the system’. In the minds of many we exist as two separate entities. One is to be pitied and helped, or a yardstick of ability for the non-disabled, the other is anyone who doesn’t fit that definition and is therefore under constant scrutiny and suspicion. We don’t exist as our true selves, with complex lives and differing needs, we exist as an abstract notion of what disability is and is not. It’s been deliberately polarised to create a hostile environment for us, where we’re required to perform our disability or have our lives picked apart.

Are we in need of a saviour to cater to our needs, or able to do something ‘in spite of it all’, grateful for help or carrying on with a smile? That’s the good disabled. The rest? Those who get annoyed when people grab the handles of our chairs to ‘help’, don’t like being talked to as if we’re children, and would really rather you didn’t tell us how amazing it is we left the house? Fuck ’em, they’re not even trying. Fall into both those categories and you’re flipping a coin as to where you end up with people.

The idea we need to strive to overcome our perceived physical failings is another thing that riles me right up, and falls directly into the ‘inspiration porn’ category. The idea you’ll one day get out of the chair, there’ll be a cure, you just need to hold out hope. Struggle to be better, strive to heal. If you accept yourself for who you are, find yourself freed by a wheelchair or given independence by a scooter rather than seeing it as a trapping or burden, if you can learn to accept and love your whole self you’re ‘giving up’.

“The only disability in life is a bad attitude”. You’ve got to be positive about it all, you can’t let it ‘win’, as if it’s something you need to fight 24/7. Feeling a bit hard done by that you’re in constant pain is simply self pity? You’re holding yourself back and making it worse by being grumpy about it. If your legs felt like they had just touched hot coals, would you not want to tell someone to “fuck off” if they told you you just needed to smile more and you’d be fine? We are consistently given advice on what we need to do in order to overcome.

Kale.
Yoga.
Core strength exercises.
Have a small breakfast every day.
Green tea.
This medication my aunt had once that helped her, even though I don’t actually know your symptoms.
This painkiller that you’re on a far stronger version of, that’ll do it.
Carrots.
Meditation.
CBT.

Say no? Given up.

Couldn’t possibly be that we know our symptoms, our illnesses better than the people making suggestions. But then it’s not about us, like with the way images are shared when people assist us, it’s about them. It’s about being seen to be helping, feeling they’ve done something, and it’s on us to make them feel as though they’ve assisted in some way. They haven’t, they’ve made it impossible for us to express they’re incorrect and overstepping without sounding like we’re somehow not wanting to be better. It’s on us now, they’ve done their bit.

You can’t get away with not telling people about what’s wrong with you, either. This notion of consistent scrutiny of disability can be insidious and the most obvious example is when people ask what’s wrong. This is asking for medical history, private information that we shouldn’t have to share. I have never felt comfortable doing so but felt it’s socially unacceptable not to. If we withhold it people normally get quite annoyed, as though it’s a personal affront that we wouldn’t want to share something so deeply private, that they’re somehow entitled to it. This has become far more pronounced here since the government in the UK began pushing an ableist agenda and the idea that we’re all milking it. You have to tell everyone, explain everything. If you don’t, you fall into the category of requiring constant suspicion, something’s clearly up.

If the only disability in life is a bad attitude, I’m sure as shit still disabled because I am truly going to tell you to put it up your left nostril. I have accepted who I am and that’s OK, and I resent people who do not understand pontificating about how I should feel about my day to day life. I resent them believing they are entitled to know something so deeply personal about me, and treating me as though my being disabled should immediately make me some kind of example of the disabled community to all who have questions and that I should be there to offer constant representation.

They certainly wouldn’t accept it if I began telling them how to feel about their own lives, or ask them about their medical histories, illnesses, and physical struggles. And believe me, I’ve done it back to people. They hated it. Every single one of them. One has even threatened me with violence.

The idea of overcoming is another avenue for harassment. Strangers hassling you for details so they can offer you that advice and make you better. A terrifying experience I had last April was a man jumping out of a car and chasing me down the road, yelling at me about God, how he could help me walk again! Like a miracle! I told him I was perfectly fine as I am and not interested and it wasn’t exactly well received. Unable to run and limited in speed in my manual chair I was unable to get away from him. This man was targeting me for my disability and I told him quite sternly to piss off. I filmed the majority of the interaction and in the end the police told me if I pursued it I’d likely be in trouble for swearing. I was in the wrong, not the man I was unable to escape from.

People don’t want us to be what we are or accept ourselves for it. I’ve had people tell me they’d rather kill themselves than ‘end up like you’. It has always been intended as a compliment. That I’m a strong person for managing to cope with something they perceive as so horrifying, being ‘brave‘, another word loaded with condescension, instead of just straight up bumping myself off for it. The sad thing is it’s been a strong consideration but largely it’s not been for my physical problems but rather the way I had been made to see them as something so terrible. To see my life as pitiable and become part of the scapegoat for empty coffers, to no longer achieve but be praised merely for doing things. I exist to people, I don’t live.

It’s easy to stop feeling like you’re even in society, you become an afterthought on the fringe in almost every way. Much of how I see myself reflected in media is as a device to make people who aren’t like me feel good. I can’t get access to buildings because ramps are too expensive, because a landlord doesn’t want automatic doors installed, because it would be ‘special treatment’ to offer help.
In terms of becoming disabled later in life, human beings adapt to new situations incredibly, but in this regard it changes your life in such an enormous way because your entire position in society shifts along with it. How people saw me when one of my disabilities kicked in went from peer to something far less. For a lot of us this change comes with immense struggles with mental health and this shit is absolutely a part of why.

There’s a racial and sizeist element to all of this that often gets missed too. Ever notice how most of those stories you see of ‘inspiring’ disabled people are white and skinny? Any saviours are normally significantly lacking in the melanin department? Fat people in wheelchairs or scooters don’t get to become those “feel good” viral tweets, they become the flip side of it all with fatphobic memes, laughter, and comments about needing to lay off the McDonalds.

Anyone that isn’t some shade of pale doesn’t usually get a look in as saviour or saved. Quite often they’re ignored completely or they too get that flip side. I’ve heard many black women especially saying about being scorned or looked down on for “giving up” by using wheelchairs, or the racist notion of constant strength of will meaning they can’t possibly be suffering in the way they are, their experiences minimised by the intersections of misogyny, racism, and ableism. Very often racism and its intersection with both gender and health is ignored completely in the politics of disability and all the complexities that surround it.

All of these things matter and all of them are connected. Our achievements are minimised and we are reduced to a device for people who aren’t disabled to compare their lives to or use to make themselves look like good people to their peers, we are cut out or objects of ridicule at different intersections. We’re scapegoats for empty coffers and at the same time something to go ‘aww’ at, like a cute kitten, when people are feeling as though their own lives are tough.

Our daily lives are uplifted because it’s bizarrely presumed our existences are so difficult that it’s incredible we leave the house, that we have lives to get on with. This is what, to me, you mean when you are inspired by us. “At least my life isn’t like that, and they can still do things!”

The hardest thing I have found about being disabled is other people.

Stereotyping and categorising of abstract notions of our lives is feeding exactly the kind of environment of hostility that makes everything so difficult, it’s polarising the discourse around our existence in society and assisting in dehumanising us. It makes it easy for us to be stripped of rights, of benefits that give us our independence and even just our very existence, it makes it easy for people to target us for harassment, it makes it easy for us to be ridiculed for projections placed upon us.

I don’t want to inspire you. I want to be a person again.