Me Vs My Disability

Many people who are disabled have to walk a fine line controlling other people’s perception of them: the line between looking vulnerable and not yourself and appearing “not disabled enough”.

The way our society treats disable people erases their identity and turns individuals into a single homogeneous being of “The Disabled”. We are stripped of what makes us us and instead represented by walking sticks blue badges wheelchair pictographs and infernal aluminium and grey plastic.

“You don’t look disabled!” and “But you don’t look sick!” are stock phrases that every disabled person will be tired of hearing. The phrase is usually offered one of two ways: disbelief and judgement or an attempt at a compliment.

When offered as a compliment it is to say “you don’t look how I think a disabled person looks” or “you don’t look pathetic or weak”. This is part of erasing our identity and assuming that all disabled and chronically ill people fit into a single mould. It also assumes that the goal and the ideal is for the person to not be disabled and so be successfully looking “not disabled” we are achieving success. It also ignores the fact that regardless of how we look we are still disabled, we have gone to great effort to look our best but that doesn’t mean we negate our disability.

When the phrases are said with animosity or judgement they fuel discrimination. The implication is usually that in claiming disability status, and especially in making use of any support or assistance, we are lying, faking or acting fraudulently. Again this comes from a place of not conforming to views of what a disabled person should look like or how they should act. It also ignores the fact that you are often only seeing disabled or chronically ill people on good days, not on the bad days or at times when their disability limits interaction: if a disabled person can’t every make it into a pub with poor accessibility some people may draw the conclusion that disabled people don’t go to the pub. That is to say, enjoying a pint with their friends doesn’t fit the picture of disability which has been created in their minds.

photograph showing a person from the waist up wearing dungarees and a black t-shirt, they have grey lipstick, glasses and green hair. They have tube bandages on both elbows. credit Chiara MacCall

The impact of this can be devastating from verbal and physical discrimination and abuse, an unwillingness to improve accessibility to place out of a belief that disabled people won’t use certain facilities, to privation when benefits aren’t awarded or long term health issues and even fatality if medical treatment is denied.

One of the often unspoken casualties of this attack on how disabled people should look and behave is the mental health and well-being of a disabled person. When you are reduced only to one aspect of your life, and that aspect is often difficult and unpleasant or comes with negative associations, it can wear away at a person’s sense of self, their confidence and self worth. Additionally being constantly questioned and doubted as to the validity of their experience can cause guilt, confusion, stress and paranoia. The mental health cost of the general public not really seeing disabled people as people is massive.

Photograph of a person from the waist down. They are seated and are wearing blue short dungarees over a black t-shirt. They have black skeleton print knee socks on, camo-print K-Tape on their left knee, tube grips on their elbows and support gloves on. Their hands resting on a walking stick. credit Chiara MacCall

However there is a balance to be struck. If we see only the individual and erase their disability, we may create more inequality by not addressing the access and care needs of disabled people. If we see only the disability we erase their identity along with any other characteristics and difficulties they may face (because a disabled person may also be a black person, a Muslim, gay, trans, poor or other minority characteristics).

I have writtenpreviously about being seen as a vulnerable adult. This continues to be an issue especially following a recent burglary that has left me very aware that I am to many people who see me a vulnerable person. To those who only see the disability I am an easy target (if their minds lead to nefarious activity any way). That’s a very difficult position to find yourself in. I don’t want to be viewed as nothing more than an equation that disabled = vulnerable yet I must face the fact that not only are there people who view me this way but that they aren’t entirely incorrect.

What could I do really if there was an intruder in my house, especially on a bad day where I was struggling with fatigue or pain. Could I fight back if attacked? Could I defend myself and my house. The answer is, probably no. Despite the fact that I have, prior to my disability, years of martial arts training is inconsequential. It doesn’t matter that for somebody with my health conditions I am relatively strong. The majority of time I am a vulnerable adult and I know that anybody seeing me in the street or, gods forbid watching me exit and enter my house with my walking stick, could conclude that I am an easy target.

Understandably this is a very difficult concept to deal with. Nobody likes to think of themselves as a target or feel unsafe in their own home. But worse than that it strips me of my identity and personality. It reduces me to that concept of disabled and nothing more.

photograph that is blurred showing motion. A person is walking away from the camera wearing a backpack and using their walking stick. Credit Chiara MacCall

But I am more than that. And I want non-disabled people to know that. I want non-disabled people to start to look beyond the sticks and chairs and hearing aids and to see real people and to understand that if somebody saying they are disabled even if you can’t see any obvious indicators, even if they don’t fit the traditional narrative of what disability looks like, that maybe they are disabled and maybe there is more to them than that disability. Being disabled does not erase my gender or my sexuality. It does not erase that I like heavy and eclectic music. It does not erase the fact that I love art and books and food. It doesn’t erase that I enjoy being active and singing and horses. It doesn’t erase my political opinions or activism.

photograph showing an arm stretching up toward the sky with a crane behind it. The arm is hyperextended and the elbow is at an unusal angle and covered by a tube bandage. The fingers are splayed wide. Credit Chiara MacCall

More than that those many things and more that make up who I am do not in any way make me less disabled, cure my disability, make me a liar, make me a faker, erase my disability or my experience as a disabled person.

That’s what the photographs illustrating this article are all about. They are a collaboration with documentary photographer Chiara MacCall who uses her lens to show who people really are and who has a great talent for showing what is beneath the surface of her subjects. I spent a day in London with Chiara being disabled and being me. We ate good food, talked politics and social justice, looked at art both in galleries and on the street and talked about what it was that made us who we are. I was not “born disabled”. I gained my disability in my late 20s. It has taken a long time for me to accept that this is a part of who I am, that it can be a part of who I am without erasing my personality, identity and the sum of the experiences I had had up until that point. Just as taking a dance class when I was 7 shaped who I am today, so did becoming disabled when I was 27.

My self identity does not invalidate my disability and my disability does not invalidate me.

Photograph showing a person wearing dungarees a black t-shirt, black skeleton print socks with various joint supports and a walking stick stood in front of a large piece of street art showing an orange skinned femme figure covered in flowers. cred Chiara MacCall

Caring is not a heroic task

I am having lots of thoughts and feelings about what happened yesterday that I need to get out. So long post warning. (CN: seizures, drug and alcohol use, homelessness and related issues)

What happened

I was walking along a pretty busy street (Boar Lane) in Leeds heading to get a bus. Just off the pain pavement I saw a guy start to have pretty severe convulsions. It was distinctly not somebody wobbling and stumbling as if drunk. He was still mostly upright at that point but was starting to sag. I went over to help him - he appeared to be unconscious and seizing. I got my arms around him to stop him falling but couldn't lower him to the ground by myself as a fully grown unconscious person is difficult to manoeuvre. I called for help and a man and woman came over to me. The man called for an ambulance and the woman helped me lower the patient to the ground. He was still seizing but we got him into the recovery position. Eventually the convulsions stopped but he remained unconscious. his pulse was weak and his breathing irregular to start with though it did steady eventually.

We stayed like that for 45 minutes waiting for an ambulance monitoring his heart rate and breathing.

During that time three people stopped to see if wee needed help, two security guards asked if we needed him moving, a pair of Leeds BID asked us what he'd taken and and, group of kids stood and watched and told us we were idiots for helping him.

Also a group of homeless guys came over to see what was happening, managed to give us his name, informed us that he suffers from seizures but he'd been using spice so he was just sleeping and then left.

After 45 minutes the guy woke up confused and a little belligerent. I managed to talk to him for a few minutes but we couldn't keep him there and he left. He told us he had been smoking spice not long before it happened. He left to go and smoke more.

The aftermath

So last night and today I felt like crap. Part of me is so angry at all the people who walk past and stare and do nothing. I guess when it's fairly obvious that first aid is happening and somebody is on a phone you don't need to stop because it's under control. But at the point where i was one small person with a walking stick trying to hold on to a fully grown convulsing man how many just ignored it. The people who did help were lovely. They weren't local and were having a short break in Leeds this was their first day.

What's worse though are those who said we shouldn't help. The people who are happy to ignore somebody in distress because they look homeless. From the distance I was at when he started convulsing I could see no indication he was homeless or a euphemistically named "street drinker". I wasn't even sure when I literally had my arms around him with him leaning his full weight on me. I wasn't sure when he was on the ground (though I had a fair idea at that point) and saw the dirt and the purple ears and the abrasions and other signs of spending your days and nights on a street. I was only sure when the other local homeless people came and told us.

But even then why does his status as homeless or a drug user make him less worthy of help?

Several people said "oh it's just spice." or some variant on that. But it doesn't matter. he had a seizure. Maybe if he was just asleep it wouldn't matter, it would be "just spice" but he had a seizure. That's not normal. That's not good. OK using spice isn't exactly good for you and but neither is sleeping rough. But that doesn't make having a seizure any less of a medical red flag or to be taken any less seriously.

I was particularly angry at the Leeds BID (Business Improvement District) reps who walked up and the first thing they said was "what has he taken?". No concern for his welfare. No concern for our welfare. Just an assumption and a judgement that he had taken sometihng. At that point we didn't know anyway. When we responded with "maybe nothing, he had a seizure" they just walked away.

Since they first appeared I have had a strong distrust of Leeds BID and their bowler hatted reps. Their purpose is to make Leeds attractive to investors and business. Their methodology is to remove anything on the street that isn't aesthetically pleasing or is in someway distasteful or a nuisance. They make me think (not helped by their uniforms) of some sort of Nazi era brigade charged with ridding our city of the unclean and unwanted, those who are a stain on their plans of creating a capitalist utopia. I don't believe they have any real power to move or harass homeless people but they do. I have a horrible nagging suspicion that they would deploy the same tactics on disabled people if they could especially those who use chairs and scooters and don't look "inspiring" enough.

Image shows three people wearing matching Leeds BID uniforms of white shirt, black skirt or trousers, black waistcoat, yellow tie and a black bowler hat with a yellow band. The are stood in a street and are smiling.

Certainly this interaction didn't do anything to improve my opinion of them. It just made me sad and angry.

Thankfully the couple helping me seemed to share by views and put up with my emotional socialist rambles.

The other group that had a big impact on me were the kids. This was toward the end of our tenure as carers. A group of kids maybe aged around 12 years old? (I find it really hard to age kids, especially boy presenting kids who are over the age of about 8 and under 14). They stopped and leaned on the railing and watched and jeered. They couldn't understand why we were helping him. They kept saying "he's just asleep. It's just spice". First of all why were they so familiar with spice. That was so terribly sad. I don't want to pretend that at that age I was unfamiliar with drugs or their specific names but I don't think I would have been so blase about it when seeing somebody unconscious in the street. What was even worse is they were right. He had taken spice. How are these kids so familiar with it that they can tell when somebody has used it and just not care.

How are these kids so uncaring that a man passed out in the street that it doesn't bother them? Is it uncaring? Is it a lack of compassion or is it just that for whatever reason they have learned that this is nothing to be concerned about. I know it is highly unlikely that all or even any of those kids were genuine psychopaths, rather that these were learned experiences from listening to and watching adults or even worse based on their exposure and familiarisation with this sort of event. While their reactions were aggravating and unhelpful at the time, really it was overwhelmingly sad. It was heartbreaking to think that these kids were growing up learning not to care. That they were growing up intimately familiar with dangerous drug use. That they were growing up thinking it's ok to abandon somebody in need because they may be a drug user. I just don't know what to do about that. I can only hope that seeing three people taking time out of their day to care may sink in. I can only hope that the explanations we gave - that it doesn't matter the reason, that we didn't want him to hit his head, that seizures aren't a normal reaction and should be taken seriously - were enough to convince them that maybe it is worth caring even if it's "just spice".

For some reason the fact that those kids witnessed the guy waking up, had it confirmed that he had been using spice and saw him walk away just made it all the more bitter. I fear that all their bias was confirmed. It was just spice. He was "just sleeping". We were just silly people who cared too much.

I keep coming back to that. Even the ambulance service, who I know are stretched thin, didn't think a person who had been unresponsive for 45 minutes following a seizure was worth responding too. Possibly just the location - an area with a lot of street drinkers and drug users during the day - was enough to make them lower the severity of the call. Maybe I am naive to stop and help. Maybe I should have walked away. Maybe it was "just spice" and he was "just asleep" and it wasn't worth my effort.

Because afterwards I was physically exhausted. Adrenaline hurts my body. I mean really hurts. Afterwards I was shaking and exhausted and in pain. I had a panic attack and was looked after by a nice barista who saw me shaking and saw my Stickman Communication cards. I could hardly stand up. I could hardly talk. But there's the person we just spent 45 minutes crouched over monitoring his breathing, keeping his airway clear staggering away and rolling another joint so it can all happen again.

photograph shows two stacks of laminated cards on a table next to a glass of water and a hot chocolate. The cards are brightly coloured with text and stickman drawings on 

I know the maxim "put your own oxygen mask on first" meaning see to your own welfare before that of others - because if you aren't OK you can't look after others. Maybe that's all that the people who walked past and said nothing were doing - putting on their own oxygen mask. Don't have the skills or temperament or physical or mental capacity to help, don't get involved. I can't judge that. I really can't because sometimes you do have to consider your own well being and I can't begrudge somebody who doesn't have the skills to get involved in something they may not understand. So why do I. Why don't I put my own needs first. Am I really that stupid and naive to think that it is worth it? It's not the first time.

What the hell is this world we are living in that I am left to feel ashamed and stupid for caring about somebody? Why is it that the first and accepted response is "what has he taken?" and then to move on?

So here I am the day after what turned out not to be a medical emergency but may actually have been a medical emergency tired and sore and broken and vacillating from sadness to anger to self doubt.

I don't want to be told I am a hero or that I am a good person. It shouldn't stand out. It should just be what people do. But it isn't and I don't understand that.

I am so incredibly lucky that the people who stopped to help were of the same mind and that same willingness to help regardless of if it was "just spice."



If you like my writing why not support me by  

When basic needs become a luxury

This is prompted by a post on tumblr that read:

fucked up how cooking and baking from scratch is viewed as a luxury…..like baking a loaf of bread or whatever is seen as something that only people with money/time can do. I’m not sure why capitalism decided to sell us the idea that we can’t make our own damn food bc it’s a special expensive thing that’s exclusive to wealthy retirees but it’s stupid as hell and it makes me angry [user: @grossrabbit] 

The comments that followed were largely in agreement and it became a post of sharing people's "easy" and "quick" bread recipes with comments about how they couldn't believe that anybody would still buy bread. There was a smug implication that those who make their own bread were smarter for having figured this out and for "beating the system" whilst those who did not cook from scratch were somehow foolish, easily duped, lazy or just not trying hard enough. Because obviously, when it was so easy to make bread from scratch with one of these simple recipes why isn't everybody doing it. 

Before I continue I should point out that I absolutely love cooking. I like cooking from scratch, using fresh and basic ingredients. I even like baking, especially breads. Additionally, by and large I do think that cooking is easier than a lot of people believe and do try and encourage people to give it a go. However, we shouldn't be scratching our heads that it is "viewed as a luxury". That's not the problem. The problem is that for a lot of people in the UK and the US this type of cooking is a luxury and one they don't have access to. The question we need to be asking is "how has something as simple as cooking from base ingredients become a luxury in our society?"

Those of you familiar with my blog and political beliefs may have an inkling as to what I believe is the answer to this question. But before I get into the specifics I want to try and explain to you why the act of cooking from scratch and baking your own bread is a luxury for a vast number of people in our culture. Please keep in mind that I am in the UK and my experiences are based on life in the UK but I have tried to be conscientious of challenges that people may face elsewhere, especially in the US. 

The actual obstacles

Cooking and baking from scratch requires - access to fresh ingredients; time; space.

If you are working long shifts, multiple jobs, studying and working, working and doing child care, working and a carer for an adult you simply don’t have time to bake and cook from scratch regularly. Or you might but you would have no time for anything else like sitting and resting, or enjoying a hobby or activity. If it is something you only get the time to do occasionally then it becomes a luxury.

If you have a disability you may not be physically able to cook from scratch regularly - this is often wrapped up in “time” because it relates to having the time to cook when you are physically capable of doing so. Chronic health conditions or disabilities that limit your ability to do an activity essentially act as a time suck that take time away from you being able to do something. The time and ability to cook becomes a luxury.

Access to fresh or basic ingredients is a difficult one. This is often a balance of time and money. Ingredients that you have easy access to from your local grocery store may be limited. Some base ingredients can be affordable, but others may not be. The alternative is going to stores further away or multiple stores to pick up the ingredients you need. This takes time to do, (there is also the added fuel or public transport costs). This issue can be compounded by health limitations that mean travelling further to go to the shop that sells the thing or going to the big busy market is simply not possible. For people who are limited by resources, budget, time or location, access to suitable ingredients is a luxury.

Then there is access to the things you need to cook. You may be able to find some items cheaply in charity shops but it’s a bit hit and miss and you need the time to be able to wait around for those items to appear or to visit a number of shops to see if they have them in. Or you need to be able to buy brand new. Again it’s a balance of time and money to make everything from pans to spatulas to mixing bowls available (and I’m not even considering electrical items or actual stoves here). Access to that equipment can be a luxury.

Poorer people who live in small homes may have tiny kitchens which they struggle to actually cook in. They may not have space to store a full set of pans or other items, they may not have a stove or working oven. They may only have a tiny fridge and no freezer if at all. Additionally if you are in a house share situation or even if you have a family in a small home you can’t take up a lot of time and space using kitchen facilities because other people need that space too. Having regular, adequate space and facilities to cook from scratch is a luxury.

The real issues

Yes, there are people who manage to cook great things from scratch on a tiny budget or in small kitchens and so on but usually these are people who have other privileges i.e. the person on a tiny budget may work from home and have the flexible time to put the effort in. Additionally these people usually enjoy the process so are getting downtime or R&R from it as well as actual food - there is added value tot he process). I have a friend who has a tiny kitchen but loves cooking and freelances as a caterer - it is amazing how much she has fit into a tiny space and how she has learned to use it, but for her it's not just about getting a basic plate of food on the plate in front of her. There is added value and intensive (her enjoyment and proficiency as a cook) in figuring out how to make the tiny space work.  

When there is an additional benefit to the effort needed i.e. it’s not just about sustenance it’s also about quality time spent, that is motivating factor. We can’t chastise people who don’t get that pleasure and for whom cooking is a chore if they want to spend less time doing and maybe more time doing something they like like reading a book, watching TV or just snoozing.

We certainly shouldn’t chastise people who are already extremely limited on time to not want to spend all their free time, space or money on cooking.

The reality is that in a lot of modern hyper capitalist societies like the USA and the UK, cooking from scratch is a luxury for a lot of people.

It shouldn’t be, but it is.

Chastising people and trying to jolly them along with “helpful” advice about this great bread recipe you have doesn’t help. It doesn’t actually solve any of the factors that is making it a luxury.

All it ends up doing is shaming people who are not able to cook from scratch due to their circumstances. It can also have the effect of trying to make people feel guilty for not trying enough. It essentially says “if you wanted to you could do this. If you wanted to you could spend literally all your “free” time, money and effort cooking, but you don’t want to. You just aren’t trying hard enough.” and let me tell you that is toxic. That is the sort of toxic rhetoric that is spouted at poor and disabled folk all the time.

It’s similar to the people who look at people like Jack Monroe of Cooking on a Bootstrap fame and say “why are the poor people complaining, if they just tried hard enough they could eat fine. If they wanted to they’d have plenty of money for food.”. While completely missing the message that cook books on “how to stretch £5 to feed two people for a week” shouldn’t even have to exist. Jack produced their initial blog posts and recipes out of sheer desperation.

In our society cooking from scratch is for a lot of people a luxury.

The issue is not people being stupid, or not trying enough.

The answer is not to be smug about your bread or to make blog articles about “5 hacks to making soup”. 

It is not viewed as a luxury. It is a luxury: and that's wrong

The answer is to challenge a society and social structure that has made the very basics of living - preparing food to eat - into a luxury activity. We should be asking why people have to work so many hours each day that putting a ready meal in the microwave is preferable (or the only option) instead of cooking. We should be asking why market forces have made it so that some basic ingredients cost more than pre-prepared ingredients, why these aren’t widely available and why companies are allowed to charge premium prices for limited stock. 

Rather than smugly talking about your sourdough starter and overnight loaf, we whould be campaigning for a Universal Basic Income.

We should be looking at why housing is an ongoing issue, why people are forced into tiny houses, house shares (not happy communes) and sub par housing that doesn’t have proper cooking facilities. We should be asking why private rents have sky rocketed while social housing has been more than decimated and why there are tax breaks to housing developers that push up the cost of buying or renting but not to those who wish to renovate existing housing stock to make it suitable accommodation.

Rather than rapping people on the knuckles for buying a jar of pasta sauce instead of fresh tomatoes, we should be petitioning MPs for tighter control of the rental market and better rights for tenants.

We should be asking we social care and support for disabled people and their carers is so poor that many disabled people end up with malnourishment because they simply can’t afford food, the facilities to cook it or have the support they need in order to feed themselves.

This is not a case of “ho ho, if only those plebs knew how to make this simple loaf!”. This is a case of “why the hell do we continue to support an economic system that makes cooking from scratch a luxury?”

In case it wasn't clear, it's capitalism. Capitalism is the reason cooking from scratch is a luxury.



Like what you've read and want to show your support? You can leave me a tip 

Sunday Short: Running the gauntlet of a benefits appeal

Screen shot of a tumblr post. Transcript below.

Transcript:
[theconcealedweapon] Some people can lift 200 pounds. But if they carries it everywhere they want for an entire day without ever putting is down, they'd severely tear their muscles and cause permanent damage to their body.
Some people can enter a 140F car in the summer to get something out of the car. But if they stayed in the car, they'd die from the heat.
Some people can hold their breath underwater for 30 second. But if they tried to go scuba diving without the necessary gear, they'd drown.
Clearly, someone doing for a short period of time does not automatically mean that they can do it indefinitely with no problem.
So why do people assume that if someone can walk for a few seconds, they don't need a wheelchair?

[filthybaguette] HOOOOOOO SHIT THERE'S THE TRUTH

[Skeletonmug] THIS THIS THIS

it goes further that wheelchair users too.

It's a very important issue with people who can't work "normal" jobs due to chronic pain and chronic fatigue.
Sure I can go to a friend's house and talk and maybe play a board game for few hours. But a) I'm not doing that without incurring pain and fatigue and b) that is not the same level of exertion as working even a part time job.
Sure I can write a blog posts  some weeks but I still incur pain and fatigue and I can't do it everyday. It's not the same as working even a part time office job.
Sure I can walk to the shop and back using mm [sic] cane but I can't do it at any given time without notice and I end up with increased pain and fatigue. This is not the same as being able to walk anywhere I want whenever I want.
You, dear judgemental and biased assessor, could walk the length of Hadrian's wall in 5 days*, but lemme tell you, even if you have trained for it and even if you are fit and healthy, you will be exhausted and in pain by the end of it. But you can do it. So from that I can of course extrapolate that you can walk 84miles up and down literal mountains all the time whenever you want, one after another with no rest and of course you'll be fine and the pain and fatigue will be trivial and [not] eventually prohibitive?
No? Then you can't decide that because I can walk to the shops and back using my stick and incurring pain and fatigue that that means I am fit to work a regular job or have zero mobility issues.
*I have actually done this before I got stick. It was way tougher than I thought. 

This is a fairly old post now but it popped up again today and it couldn't be better timed.

This post is going to be unusually candid and personal but I think it's important to share my experience with applying for PIP (Personal Independence Payment).

The quick rundown of the timeline is as follows:

• October 2016 - receive a letter from the Department of Work and Pensions stating that I will be being moved from my Disability Living Allowance on to PIP and need to apply for PIP by November 2016.
• November 2016 - Face to Face assessment with DWP assessor
• December 2016 - receive a letter from the DWP saying that I have been awarded the standard rate for mobility at £21.61. This is over a 75% decrease in what I was receiving in DLA and a demotion in grade.
• December 2017 - Request documents so I can submit what is known as a "mandatory reconsideration".
• January 2017 - Date for mandatory reconsideration passes without me receiving the requested paperwork. 
• January 2017 - finally receive paperwork
• February 2017 - Submit mandatory reconsideration 
• February 2017 - Receive refusal of mandatory reconsideration.
• March 2017 - Submit formal request for appeal and tribunal
• February 2018 - Receive letter with date of tribunal and option for submitting supplemental information. 
• April 2018 - Appeals Tribunal held. Decision given. Awarded an increase to include Standard Rate Care. This is a 100% increase from the original award.

The reason this is being paired with the above tumblr post is that so much of the application, assessment, reconsideration and tribunal is about repeatedly reminding and convincing complete strangers that being able to do one thing does not mean that I can do everything all the time.

There is a key phrase in the guidance and scoring criteria for PIP and other disability related benefits: "reasonably, reliably and repeatedly".
What this basically means is can you do it with reasonable levels of pain, discomfort or distress, no more than an able bodied person would be expected to endure; that they can be expected to reliably perform the task in an expected manner; that they can repeat the task in a reasonable time frame.

Despite this being specifically in the guidance for PIP applicants, it seems that any assessors and professionals involved in decision making don't keep this in mind or have a poor understanding of what it actually means. There is also a tendency for people to think in very discrete terms and not consider that doing thing A will also have an impact on your ability to do things B,C and D. It's not just about doing thing A again and again.
On top of that it's recognising that things A, B, C, and D may have different stresses on the system or difficulties associated with them. Sometimes it helps to think about it as a game of Tetris with really big awkwardly shaped blocks. Each day you may only be able to fit in one big awkward shaped block. Or you can fit a B block and a C block but that's it, not other. Of course you also need to consider the long term impact of activities or situations. Symptoms don't stop and our bodies don't resent at midnight ready for a fresh day.

This is why my PIP appeal was brutal. Because I have to repeatedly, with every activity, from cooking a simple meal to walking to a bus stop remind them that even if I can do it once I can't do it again and again. Even if I said I can start cooking a meal, I can't necessarily finish cooking a meal or do anything after cooking a meal.
Additionally if it can only be done with pain, fatigue, distress, or confusion then it is not being done in a reasonable fashion.
Even communication. Yes I might be communicating with you now but can I do it reasonably, reliably and repeatedly.

It is ridiculously exhausting to have to do this again and again. It's not just the frustration of repeating oneself, it is the pain and distress of having to justify your experience to people who are absolutely failing to grasp what you are telling them.

Disabled and chronically ill people really need able bodied people to actually consider and appreciate the ease with which they do things every day and how that is not the experience of disabled people. More than that we need able bodied people to listen to disabled people and respect and understand that we are not exaggerating. We are trying to be as open and frank about our experiences as we can. It we say we can't do something it's because we can't. It doesn't matter if we did it yesterday or we did something that you judge to be similar. If we say we can't do it or we can not do it reasonably, reliably and repeatedly then we can't.

If more people understood this then people wouldn't have to go through 16 months of intrusive, distressing and at times physically and mentally demanding scrutiny.