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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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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?

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NHS Staff Deserve Better

We clap for them, we praise them, but what are we actually doing to change things for them?

I have been in even more excruciating pain than usual, and I should have gone to hospital a lot sooner, but due to a history of medical gaslighting and dealing with constant pain, I find it hard to register when something hurting is ‘serious’. By which I mean, it is impossible to know when a hospital could actually help, especially if they usually make things worse. Not just if they are rude or if I experience a flare from sitting in the waiting room for hours, or if they don’t take my bloods properly and put me in more pain, but also because going to hospital when you’ve had bad experiences can be quite traumatic. Something happened. And for the first time in my life, when I went to hospital it showed up on a scan. It showed up in my blood tests. It showed up in the faces of the doctors who didn’t look at me like I was lying.

The doctors taking care of me on this occasion were very caring. It was my first inpatient stay as an adult rather than a child, and that changed how I was treated but also how I perceive the NHS. I now notice just how much is systemically wrong, how trapped the staff are in a system that is under so much strain, how new doctors are taken advantage of, and experienced doctors are desensitised. No matter how much these health professionals want to serve, they are often restricted by the pressures of bureaucracy and ‘efficiency’. For the majority of the doctors I have seen (note, the good ones, the kind ones) English is not their first language. And yet Brexit and our xenophobic laws mean we have created an unwelcoming environment for them, and we are limiting a great number of incredible healthcare professionals from coming to work in the UK by stopping freedom of movement. We clap for them, we praise them, but what are we actually doing to change things for them? Donations alone are not going to fix this system or change these laws. I hope in the next general election our votes reflect what our NHS workers deserve, because it is not this.

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Our Education System is Failing Our Children.

By forcing them to do exams that only serve the institutions and league tables, we are knowingly damaging the growth of their brains.

The education system is broken. Did you know this? If you’ve ever had a conversation with me, you know! The thing I am most passionate about is fixing it. By my friends, I am known for working education into any conversation. They mention it for fun to watch me get worked up about it. Why does this issue weigh so heavy on my heart? Aren’t I meant to be battling with the healthcare system? Tackling ableism? Climate change? Yes. That is exactly why.

Our education system is the root cause of all our problems. I believe this to the core of my being. It is not just what we are taught but how, our attitude towards learning, that is detrimental to our wellbeing in the long term. By treating creative subjects as less valuable we oppress whole groups of people. Nevermind creativity is considered the main thing that differentiates us from computers and nature, that makes us human. By not teaching ‘soft skills’ like communication and compassion our world lacks empathy and emotional intelligence. By segregating children using age we send the message that age dictates intelligence, we stagnate their abilities to form friendships, we do not prepare them for ‘the real world’. By keeping children in school we ignore their potential. By forcing them to do exams that only serve the institutions and league tables, we are knowingly damaging the growth of their brains.

We exclude education about sexuality, disability, philosophy and so much more, to the peril of our society.

This is the truth and it’s not comfortable to hear because it’s not ‘safe’. Creating a world in which grades are used to categorise and limit people seems better because we don’t have to look at the real problems. We can focus on the lie of school > exam > university > exam > job and be distracted from innovation. But this is not learning. This is brainwashing. 

Thankfully, education is also the route to every solution. If we change the education system, we can change society.

Education is the root of every problem.

Education is the route to every solution.

For more, listen to my podcast episode Accountabili-tea! with Dr Debra Kidd

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Pain & Joy

This is the face of someone who has just been discharged from hospital and narrowly avoided an operation. This is the face of someone who is loved and cared for by a lot of incredible friends. This is also the face of someone dealing with incurable excruciating pain without painkillers, it is the face of someone who misses their mum, it is the face of someone who is so close to being done.

Pain exists at the same time as joy. There is never one without the other. They sit side by side and sometimes they coincide and on difficult days they collide.

This is my face, and I find it remarkable how many marks it is missing, considering all those collisions.

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Include Asians in your Anti-Racism

As a disabled writer, woman, and human being, intersectionality is incredibly important to me. We need to dismantle all systems of oppression, not just one, because they are all interconnected. That’s why I want to talk about the rise in hate crimes against the Asian community right now.

I benefit from Asian cultures in many ways. Whether it is food, films, kpop, products, manga, fashion anime, healthcare, we all benefit from these communities’ work and history.

I eat sushi, dumplings, pho and kimchi. I have Asian family members and friends.
I love Studio Ghibli.
I hope to travel to Japan, Korea, China, Vietnam, Thailand and more Asian countries one day.

But even if none of this were true, the simple facts are that hate crimes in the Asian community have been rising exponentially, that the representation, particularly of Asian women in the media, is extremely damaging, that these communities have been targeted and blamed and attacked because of ignorance and racism.

You shouldn’t need to benefit from a community to care, you shouldn’t need to have a friend or a family member suffering to speak out, the fact that you are human should be enough to stand up for what is right. I am sick of activism only working as a trend, acting like we only have a small window for change. No. Speak about the issues you care about, always. Not just when it’s a hashtag. NOBODY should have to be scared to go outside.