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Public Transport Excludes 18% of The Public

The thing you need to understand about ambulatory wheelchair users: a wheelchair is not an escape. It does not fix the pain.

We don’t notice how uneven the pavement is, how high curbs are, how narrow so many doorways are, no we really don’t notice half of our surroundings until we try to navigate the world in a wheelchair. We don’t realise that so much of the so-called access we have is not designed by disabled people, but is the bare minimum in imagining what a disabled person might need by able bodied people. 

If you have any form of disability, are neurodivergent, or have sensory issues, you will know what a nightmare being in public spaces is, let alone public transport. With this in mind, for my latest hospital appointment in London my mother and I decided to get hospital transport so I could lie down. Ambulances, ironically, do not feel safe. In the UK lots of them are converted vans, and they are very painful to travel in as they lack suspension. So, unfortunately that did not solve the issues I face when travelling. 

In the hopes of a less stressful journey back, my brother booked us a first class train ticket, only £10 more expensive, but that way I had more hope of being able to lie down and it would be a shorter journey. At the train station we asked the first attendant we saw about a ramp, how to get on board, this is our ticket, she replied with the platform the train would be pulling into and that was it. The second person we spoke to was slightly more helpful, telling us to ask a guard. When we got to the platform and asked the guard, he put down a ramp for us, and the first time the entire trip I felt like something was going right, until we got on board the train and my wheelchair couldn’t fit between the seats to get to the first class compartment where I could lie down. As soon as we asked the guard for help he shrugged and practically ran away whilst saying ‘this is the only compartment I can put the ramp down’. No offer to carry a bag or help carry the wheelchair to the next carriage.

I am an ambulatory wheelchair user, which means I can sometimes walk. At the moment I can only just stand my pain is so excruciating. Leaning on the seats so that my mother could fold up the wheelchair I was shouting to deal with the pain and frustration. How unfair. How ridiculous. Why isn’t the world built for me?! Why is every minute another challenge in every possible way? Even folded up, the wheelchair was too big to fit through the aisle, so, exhausted, after wandering the station to find help, and travelling across London, as well as a torturous hospital appointment, we had to shove it down the aisle of one carriage, and then another, until we finally ended up in the right carriage. Whilst, yes you could argue that the ‘accessible’ seating where I could have just sat in my wheelchair and not travelled to the carriage we had paid for, is what I should have done, what does that say about our view of disabled people? That they don’t deserve to use first class? That they’re not welcome there?

I had been sitting up all day with awful pain, and the is the thing you need to understand about pain and ambulatory wheelchair users: a wheelchair is not an escape. It does not fix the pain. It does not help enough. It simply means I don’t have to walk as much so I can sometimes prevent more symptoms. I can’t even push myself. Being wheeled over cobblestones and grids and being tilted up curbs? It is just as exhausting as walking. After those two days in an unfamiliar environment with rigorous hospital testing, I needed to lie down.

When we arrived at our stop, the guard came and lifted the wheelchair out whilst Mum helped me, and she said on the way out of the station that he had redeemed himself. Yes, I agreed, and then thought about it. No. No he did not redeem himself by doing the bare minimum. That did not make up for his rudeness or lack of concern. And though he may not be responsible, there is no making up for the fact that public transport excludes 18% of the public’s population. 

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Society is Dependent on…

Sir Ken Robinson died on 21st of August 2020 and he was one of my first ever heroes… I wanted to share this quote with you in the hopes that you will redefine your definitions of ability and intelligence.

Human communities depend upon a diversity of talent, not a singular conception of ability. And at the heart of the challenge is to reconstitute our sense of ability and intelligence.

Sir Ken Robinson

I want to address something I hear & read about a lot: that disabled people are disposable. Worth less. To say that disabled people are a ‘drain on society’ or resources or taxpayers or whatever else is to say that the success of society is measured by money. In actual fact, the word ‘society’ comes from the Latin socius (companion) and was first found in English in the mid-16th century meaning ‘companionship, friendly association with others.’ Society is thus defined by relationships. Just as everything in life is, really. A plant’s relationship with the sun is essential for its survival. Our relationships with each other is vital for our own wellbeing, as lockdown has taught us all too well.

Therefore, not only is this idea that disabled people are less productive, less capable or less worthy fundamentally untrue, it would also mean that every single one of us is a drain on society. Is a pregnant woman on maternity leave a drain on society because she has stopped working? Absolutely not. What about those who are battling cancer or depression? Both disabling illnesses but not the people you would immediately consider when you hear the term ‘disabled people’. Our capability to love makes us all inherently valuable. Worth is not something you earn or something that can be taken away. We, as disabled people, are no more a drain than anybody else. Given the right access and accommodation, given a society that did not disable us- the empathy, work ethic and fire we possess from being oppressed is one of the most valuable resources on earth!

We are society, so whatever we don’t like about it, we have the power to change. Diversity. Society depends upon us.

This blog post originated from a newsletter I sent out to the Communi-tea a few weeks ago, if you’d like to be the first to hear updates, or want some book, song, & film recommendations gracing your inbox each week, you can sign up here!

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What we can do after COP26

71% of global emissions are produced by just 100 companies, so the most important decision we can make to protect our earth is deciding to engage with our political systems and advocate for system change.

COP26 is over, and to say it was disappointing is an understatement.

One minister was excluded from meetings due to being a wheelchair user- and I would like to note that using a wheelchair is not a particular access need. Especially when attending a modern conference building for world leaders. 1 billion people are disabled. It is not their responsibility to declare their medical condition in order to be treated like a human being. The media specialise in writing inflammatory headlines instead of focusing on progress we can make with the available solutions.

We cannot isolate these issues into accessibility and sustainability, the issue is exclusivity and an all round lack of compassion. Exclusivity not only in attendance, but in the attitude that world leaders are not responsible for those who are suffering from climate change right now. Lack of compassion not only towards vulnerable communities, but towards the earth.

It is not just disabled people who have been left out of this conference, but the people who are right now, as you read this, being impacted the most by climate change. Indigenous people, frontline activists, and vulnerable communities have not been given a platform. 

One thing is abundantly clear: our global purpose must be to limit Global Warming to 1.5ºC. In the coming months, and years, we must all be active in holding our leaders to account and ensuring they do all they can to prevent further destruction from the climate crisis. 

At a local level, it is easy to feel hopeless, like nothing we do can make a difference, but that is not true. We are not powerless within our systems, we are the system. There is so much we can do, and so much that needs to be done. Here are a few ideas.

💡Remember that ableism and climate change are connected issues, not separate. 

💰 British Banks finance 805M tonnes of CO2 production per year, so switching your bank account, investments, and pension to eco-friendly alternatives that don’t directly support the fossil fuel industry is not only the easiest lifestyle change you can make, but also the most impactful. For a list of ethical banks click here!

❓Question every headline you read, every promise you hear- are they backed up with fact-checked evidence and actionable, solid steps to move us forward? 

❗️Ask for access even if you’re not disabled, call out restaurants and buildings and venues for not being accessible, write to companies and your local representatives so that disabled people don’t have to be the only ones ‘making a fuss’ (AKA asking for their basic human rights.)

🦮 When creating an event think about access in the planning stages, not after a disabled person has been waiting 2 hours outside. 

👩‍💻 Include access information on your website, leaflets, and invitations.

📰 Don’t let divisive headlines from the media and distraction tactics from politicians make you forget the planet. 

🌍 Our global purpose is to limit global warming to 1.5 degrees. Remind yourself and your friends that the focus is our planet’s future, not present politics. 

🛍 Buying second hand and mending our clothes instead of buying fast fashion is another good way to reduce our carbon footprint. Eating less meat, taking public transport, avoiding flights, reducing plastic and investing in reusable items like tote bags, or water bottles, as well as swapping every-day items to refillable/packaging free items. This can be done with deodorant, shampoo, toothbrushes, and many other body products as well as food items.

However, not all these options are always accessible or affordable since we don’t have policies to regulate them. They aren’t the most beneficial things we can do, because even if they were available to everybody, 71% of global emissions are produced by just 100 companies, so the most important decision we can make to protect our earth is deciding to engage with our political systems and advocate for system change. Because only plastic free, electrical vehicle friendly, affordable public transportation, and sustainable food policies can make the difference we need to stop climate change. Only the government can hold these companies to account and establish the laws needed to keep our environment safe!

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Ethical Banking

British Banks finance 805M tonnes of CO2 production per year, so switching your bank account, investments, and pension to eco-friendly alternatives that don’t directly support the fossil fuel industry is not only the easiest lifestyle change you can make, but also the most impactful.

Monzo, Starling Bank, Nationwide, Triodos
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Ableism

Ableism means discrimination against disabled people. 

Disabled people are the largest minority group in existence, making up 15% of the world’s population, and one day, that will include you. However, most people have never heard of… Ableism! This means discrimination against disabled people. 

The way society is structured to favour enabled people and exclude disabled people is systemic ableism, but not many people know what that is, let alone what to do about it. Disabled people themselves are sometimes unaware that they are experiencing prejudice, or that they have the option to do something about it. I have been disabled since I was 10 years old, and didn’t know the word ‘ableism’ until I was 17. I had no idea how to explain the injustice I was experiencing and so I couldn’t do anything about it. So please watch this video so we can change things for disabled children in the future:

Ableism | Tea with HB YouTube | Please SHARE with a friend!

Before the pandemic virtual alternatives weren’t an acceptable option, but now they have become helpful for enabled people, suddenly disabled people get the accommodations and access that we’ve been begging for for decades… Watch my YouTube video ‘Ableism’ to find out more!

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If you’re not Disabled…

Enabled people are actively enabled by a society that is designed for them. 

Disabled people are actively disabled by a society that is designed to exclude them. 

Disabled is a neutral term, because disability is a natural variant within humanity. And yet, becoming disabled is often treated as the worst-case scenario… So, where does disability get its bad reputation from? I think the answer can be found in the attitudes surrounding disabled people, attitudes that are upheld by the language we use. 

The language we use holds power. It changes how we are treated- and how we treat others. Nicknames imply friendliness, Surnames imply formality. Depending on the context of the situation, words are used to patronise, objectify, or insult one another. But they also allow us to compliment, respect, and encourage each other! This is the power of language.

We need a better term to describe people who aren’t disabled because the words we currently use aren’t accurate. ‘able-bodied,’ ‘normal,’ ‘abled,’ and ‘non-disabled’ are out of date terms because they don’t adequately explain the experience of living without a disability.

One problem with using a term like ‘able-bodied’ as the opposite of disabled is that it implies that disabled people do not have able bodies, which is not true for a variety of reasons. Disability is not always physical and those 

 physical disabilities still have able bodies because ‘able’ is a subjective and multi-faceted term! 

Using the term non-disabled to describe people who are not disabled seems to make more sense. The double negative subverts our expectations by implying disabled is the norm which is thought provoking. However, I still prefer not to use this term. For one thing, the opposite of disabled is not non-disabled. It’s not a black and white thing that you are or are not, there is nuance in being disabled, because there is nuance in being human. You can be temporarily disabled, or be impacted by disability if you are a carer, parent, or partner of a disabled person, which deeply impacts how you interact with the world. Therefore, your experience as someone without a disability is not always ‘non-disabled’.

Disabled isn’t something we inherently are. Yet disabled is used as a descriptor, an adjective, when actually ‘disable’ is not an adjective or a descriptor, it is a verb. The experience of being disabled is just that, an experience shaped by the external forces of our current society. In a different society with more acceptance, more accessibility, more funding for healthcare and mobility aids and medications, many of us would not be DISabled. And similarly, if you are not disabled, that does not mean you are able. ??? We are ALL able, you cannot be more or less able, because we all have different abilities. Some people have incredible ability to write, draw, cook, calculate, others don’t. Disabled people are ABLE but they are very much disabled FROM doing certain things, which is why I believe the term we need to use for people who are not disabled is not ‘non-disabled’ or ‘able-bodied’ or ‘normal’… the term should be ‘enabled’. A verb. To enable someone to do something. 

Enabled people are actively enabled by a society that is designed for them. 

Disabled people are actively disabled by a society that is designed to exclude them. 

So let’s change the language we use! Enabled also allows room for the people within the disability community who are enabled to see the world through our eyes, because they love, care for, and know someone who is disabled. Enabled is inclusive language for the parents, friends, partners, and workers who know some of the intricacies of disabled life. 

Enabled also encapsulates the experience of people who are enabled by society to avoid the issues disabled people are forced to struggle with every day. You are not able just because you can climb stairs, or don’t notice the uneven surfaces or the overwhelming bright lights and intense noise. You are enabled to ignore these things that are obstacles for other people because of the way our society is structured. Stairs are the norm, not ramps or lifts, cobblestones and wonky paving are the norm, not smooth surfaces. Shops install bright lighting to make their products look good without a second thought for the seizure, migraine or sensory overload it might trigger. 

The reason I use the term ‘Enabled people’ instead of any other term, is because it includes the experience of people who may not be disabled themselves but whose lives are still impacted by disability. In this sense, there are two categories of enabled people: those who are enabled to empathise and understand the disabled experience and those who are enabled to ignore disabled people and their experiences.

Disabled people are not less able, and we don’t have different or special or extra needs because everybody has different needs! The difference is that enabled people’s needs are already met. Disability is not about the medical, or the personal; it’s about the structure of our society. A society that is designed to either DISable or ENable. 

So please, let’s not use terms like non-disabled, able-bodied, normal, abled… because they aren’t helpful, they are divisive. They contribute to the idea that disabled people are not able, they increase the stigma around disability as an identity, and they add to the stereotype that disabled people are worth less.

If you’re not disabled, you’re enabled.

So let’s use enabled instead! Because it’s the most inclusive and accurate description. 

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On the Internet, Ignorance is Malice

‘Never ascribe to malice that which is adequately explained by incompetence.’

Napoleon Bonaparte

On the Internet, ignorance is malice. 

Let me preface this, because nuance is critical. I am talking about online articles, documentaries, comments, posts, and any other media that wilfully ignore scientific evidence, refuse to do reliable research, and shut out those with lived experience or proper qualifications. 

Hanlon’s razor is a mental model that is summarised in the words of Napoleon Bonaparte: 

‘Never ascribe to malice that which is adequately explained by incompetence.’

I truly believe that bad intentions are rare. Rarer than incompetence and naivety, certainly. But not on the internet. Not when it is all too easy to take anger out on somebody from behind a keyboard. To anonymously hurt people, usually vulnerable people, is not thoughtless incompetence or understandable naivety, and it is all too common.

To be on the receiving end of these kinds of comments, or to stumble across this kind of media, is a difficult process. Assuming the worst in someone isn’t good for us, and acting on these assumptions doesn’t give the other person a chance to be better. We can never know the intentions of everyone we meet, and it is often sensible to question whether emotions like anger, frustration, and sadness are justified before we act on them. So, to respond in the hopes of an open discussion should be common practice, because it means we are giving people the chance to unlearn damaging narratives they might not have questioned before, whether they are malicious or not. Unfortunately it is not that simple, especially when vulnerable people are targeted. Even when responding to these comments in a sensible way, free from anger or upset or frustration, kindness and genuinely good intentions sometimes come across the web as condescension and disdain, and the interaction goes from bad to worse. It should not be up to individuals to spend time and energy educating strangers who, naive or not, present themselves with unkindness. It is not fair to expect the people most affected by this kind of abuse to be the ones to deal with it. 

Social Media sites like Instagram have technology to flag sensitive material, so why can’t they use that same technology to protect the creators that give their platforms a purpose? I heard Hank Green say that social media is no longer a place we visit, it is a place where we live. They have their own cultures, rules, they are as powerful as countries in their ability to influence, and yet they are not democratic. Instagram have acknowledged the fatphobia, ableism, racism, queerphobia, homophobia etc that their algorithm fosters. Many of their users have begged for change in the community guidelines to create a safer environment for themselves or, if they are creators, their audiences. Instagram has promised to do better- and yet? Here we are. I am a disabled woman volunteering my experiences and creating resources for free, in the hopes of helping others. Yet I am not protected from the ableist slurs, DMs, and comments I receive. 

In a time of the internet, where knowledge and education are quickly and easily accessible, to act on thoughtlessness, to comment or post without prior research, or to run a community based platform without enforcing safety guidelines… This is not ignorance or naivety. It is malice.

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A non-love letter to supermarkets

Food shopping is not the triumph I thought it would be. 🥫

I hadn’t been in a supermarket for almost two years. Colours, beeping, clothes, trolleys, people, lighting, rattling, it was all too overwhelming and I severely overestimated my ability to walk. Why don’t supermarkets have benches? Why is everything so bright? Why is nobody wearing masks? Feeling sick with a subluxed foot, I return home with only half my (very short) shopping list crossed off.

Big red letters line the path every time that I leave the house: ‘you are not welcome in this world!’

I lament to my mother that I belong in lockdown.

I sob to my boyfriend that I make everything worse.

I spiral down and down, with the thoughts of my friends moving on with life and leaving me behind.

Internalised ableism was less loud in lockdown.

Maybe it’s because they didn’t have the right gluten free bread, maybe it’s because I couldn’t find the crisp aisle… but re-entering the world was disappointing. 😔

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Being vs Being Seen

Ch-ch-ch-ch-changes…

It is hard to know who we are without being influenced, let alone who we are without influencing others. 

‘Be the change you want to see in the world’ …but in order for that change to be enacted, people have to see you so they can copy you. In order to influence others, you must have some kind of audience. To be the change, you need a platform! It is unfortunately not as simple as being. To be the change you want to see, you have to be seen. 

Oversaturation of content makes ‘being’ that much harder. Especially when so much of our identity is formed and perceived online. It is hard to know who we are without being influenced, let alone who we are without influencing others. 

What kind of change do we want to see? Who do we want to be? How do we want to be seen? Each answer might be different! For instance we might want to see a world that’s climate is not crisis, but we want to be a person who isn’t worried about the future, and we want to be seen by others as easygoing and fashionable, which might include wearing non-sustainable clothing, or using animal products, or not talking about the climate crisis, in order to fit in. Aside from that, so much of the blame is placed on the individual consumer, when it is the government’s and companies’ responsibility to put policies and practices in place that don’t damage our environment. With all this in mind, it is no wonder change is so slow, and figuring out what kind of change we want to be in the world is so difficult.  

Perhaps it is time to consider just being in the world, rather than being the change we want to see. If we can figure out who we are first, amongst all this chaos, but with no expectations to change any of it… maybe then we will be able to build a solid foundation from which to create real, lasting change, without draining ourselves in the process. 

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Freedom Day

Disability is the only minority group that anybody can join at any time, the only one YOU will definitely join at some point in your life. 

‘Society is defined by how it treats its most vulnerable’

I know many are excited about Freedom Day but… What is freedom if 30% of the population are left behind? Not just disabled people, but the people they come into contact with, their families, friends, and carers. We are all connected. Our actions affect each other. 

So, I am begging you. Disabled people have suffered enough. We have all suffered enough! So many have been restricted from visiting loved ones in hospital. Some haven’t been able to see family at all in years. There have been far worse tragedies during these months than having to keep a distance or wear a mask. These restrictions are not infringing on your freedom. Forcing vulnerable people to lockdown and live in fear is infringing on their freedom. So, Freedom day is not freedom for a third of the country. 

Scrap Freedom Day, and use your voice to ask for the access that has been provided to be made permanent for the disabled people who have been pleading for it for decades: Online learning, remote working, virtual entertainment. Scrap Freedom day and spare a thought for the people who have been trapped in the same four walls all this time, no garden. Scrap whatever imagery you have or ‘returning to normal’ being positive when the NHS is still overwhelmed, and many are still dying because of it. 1,2000 scientists have labelled this move by the government ‘an unethical experiment’ and have advised against it on the grounds that easing restrictions makes England a threat to the world.

Yes, everyone’s suffering, but is it right to let 30% of the UK continue in even more fear, danger and difficulty, to give ‘freedom’ to the rest? What kind of freedom is that? It looks like eugenics to me.

We can make real life impact, so please, speak up for the ones left behind, and ask that restrictions be kept in place. If you are not disabled, we need your voice. Disability intersects with every other community, (30% of the LGBTQ+ Community are disabled) and it is the only minority group that anybody can join at any time, the only one YOU will definitely join at some point in your life. 

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Endometriosis

The NHS nearly killed me. The NHS saved my life.

I don’t know how to talk about this.
Unexplained period and bowel pain for my entire life. An 8 cm ovarian cyst. A test with a result. Relief spiralled into Gaslighting. A private blessing. A hidden complication. And me.
Waking up from a major complex surgery without painkillers, intolerant to every medication they tried, throwing up for hours with stitches, unable to move…

I can’t comprehend the glass window I look through. Memories shatter and visit me in fractured pieces puncturing my heart. How could I treat myself like that? How did I manage to cope, and not only cope but edit podcasts, live and love and function with this incredible pain?! I even became a freaking politician during all of this! (Hi, I am a town councillor now, vote for me when I apply to be an MP won’t you?)

A list of things that kept me sane: Lin Manuel Miranda, Taylor Swift, My mother, the person who taught me strength.

How could I be such a hypocrite and forgive myself for it… Will I ever forgive myself? Another diagnosis. How many does that make now? The doctor said I had been dealing with Endometriosis for years. The doctor said it was shocking my local hospital had tried to make me wait until the end of September for a consultation, not even the operation. The doctor said they should have operated when the first found it 6 weeks ago. What a wild thing, to be believed by a doctor.

And the heart breaking dichotomy that always strikes? The NHS nearly killed me. The NHS saved my life.

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Voting as an Invisibly Disabled Person

If I were in my wheelchair would they have said that? If my arm was in a sling, would they have said that?

We pulled into the polling station, parked in the disabled spot, put the blue badge up and as I put my mask on, my Mum tells me to  ‘walk carefully’. 

Walk carefully. Look a bit sad. Prove you are in as much pain as you feel. Wipe off that brave smile so we don’t have to deal with an argument. That’s the reality when you are invisibly ill. And as I walk up to the entrance I pause, wondering if I am putting on more of a limp than I really ‘need’ to, even though my hip is in agonising pain. I wonder if the person behind the desk will ask. I wonder what I will say. A year not having to deal with strangers, questioning, misunderstanding. A year of learning about ableism and advocacy and watching society ignore the most vulnerable. And I think, no, I am in pain. I don’t want to explain why it is wrong to ask. And maybe they won’t ask! And as I decide that I won’t answer, the person has walked out from behind the polling station desk to be as near as possible when they ask me: 

‘Do you need to use the disabled entrance?’ 

Tired. I sigh. ‘Yes.’ 

‘Okay!’

They hurry back. And I try to brush it off, well that wasn’t so bad, they weren’t rude, they didn’t argue. And I try not to think about my parents walking in behind me and I try not to assume that their assumption will be that I am using the disabled entrance for my parents, not that my parents are using it for me. If I were in my wheelchair would they have said that? If my arm was in a sling, would they have said that? If I was using a stick- if I looked less than perfectly healthy? 

I chastise myself for being offended- snowflake, you’ve had much worse, they didn’t argue with you. But it was the assumption. The reminder that even though I had a two hour seizure less than a week before, even though I couldn’t get out of bed just yesterday, nobody can see the excruciating pain I am struggling with.

There is no accessible polling booth that I can see, there is no stool or chair to use as I cross the box for the Green Party. If I were in my wheelchair I wouldn’t be able to reach the table to write my vote.

If I hadn’t recorded a podcast episode earlier today about this very thing, maybe I wouldn’t have noticed how bad it made me feel? No, I would have noticed. I just wouldn’t have understood why it made me feel bad.

Why didn’t they check our car for the blue badge? Why did they have to ask me? Why am I so upset about this- they didn’t say anything rude! Except… they did. And I am upset. 80% of disabled people are invisibly disabled. It is not okay to challenge someone for using access. You never know the full story, and most of the time, you shouldn’t need to. There was no queue, nobody behind us. What damage did they think they was preventing if her suspicion was correct, and I was a faker- has anyone actually ever met somebody who faked a disability? Why should the rest of us suffer for their deceitfulness? Why didn’t the person behind the desk, the person with a duty of care, think of the damage they’d do if they were wrong?