Categories
Blog Posts

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. 

Categories
Blog Posts

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!

Categories
Blog Posts

Instead of ‘Get well soon!’

If you, too, squirm every time you hear ‘get well soon!’ Then this is for you, with love, from me 🥰

I just want to preface that there is nuance here! Of course the intentions of ‘get well soon’ are good and it’s a way to show you care. But for many of us with mental health conditions, chronic illnesses, disabilities, or many other ailments, hearing it over and over again can be really grating, passive, and is a reminder of something that might not, or in some cases will never, happen. In some cases, when said repeatedly even after being told by someone that these words are hurtful, they are an ableist microaggression. I am done with feeling ashamed about not liking these words. Why on earth wouldn’t we all want to use more inclusive language? Why wouldn’t we want to say something that is more helpful than just ‘feel better’? If this isn’t for you that’s fine, I hope another post of mine is more helpful! But I think language can be really important in helping us empathise with other people. In this case, people who are constantly ‘not well’ and may never be completely ‘better’ 🌸 

Obviously the relationship you have with the person dictates what you will say, but if in doubt, a funny meme or cute baby animal picture is usually guaranteed to make someone feel loved! 

ID: Title reads ‘what to say instead of get well soon’ with six cute illustrated mushrooms, each attached to a different phrase: 1 you’re coping really well!

2 would you like to talk about it?

3 I’m here for you

4 I’m happy to listen to you

5 that sounds so hard

6 let me know if I can do anything

to help?

Categories
Blog Posts

How to cope with Endometriosis

Don’t know what Endometriosis is? Check out Lifting the Lid on Endometriosis

Painful Periods are NOT normal. If you have periods that are so painful that they affect your daily activity, go to your doctor urgently and do not give up until you receive help and support.

Endometriosis is an inflammatory chronic condition. Unfortunately there is no complete cure, and some things will work better for some people and not work at all for others. However, here are my own tried and tested coping techniques for this incredibly painful condition.

🍵 green tea has been found in some studies to have a positive impact on those with endometriosis 

❤️‍🔥 everyone knows how comforting a hot water bottle can be, and it is a reliable aid for any cramp

⚡️ I CANNOT begin to express how much of a life saver my tens machine has been! This post is not sponsored by @ovira but they are a wonderful company I use my ovira tens machine every day, it helps my chronic joint pain as well as my Endometriosis pain. Shop for your own here!

☀️ I am sure many of you are aware how beneficial Vitamin C, Magnesium, and Vitamin D are in general, but they are also wonderful for Endometriosis! Starflower oil is another supplement that many find helpful.

🍣 eating a diet of nuts, seeds, avocado, fatty fish and other anti-inflammatory food can lower inflammation and strengthen your immune system! 

💦 drink more water! A reminder we always need, or at least I do!

❗️When I say women/female I mean the literal definition, those with female anatomy. This includes trans men, intersex people, and nonbinary people. 

Categories
Blog Posts

Medical Sexism & Endometriosis

Don’t know what Endometriosis is? Check out Lifting the Lid on Endometriosis

Painful Periods are NOT normal. If you have periods that are so painful that they affect your daily activity, go to your doctor urgently and do not give up until you receive help and support.

The medical concepts of most diseases are based on male physiology, to the extent that women are dying because some doctors treat women like men.

The Guardian, Marie Claire, Harvard

Pain in women is not taken seriously. Fatphobia, racism, classism, poverty, and more, all contribute to injustice in the healthcare system. But when it comes to the medical sphere, sexism is perhaps the most predominant form of discrimination. The medical concepts of most diseases are based on male physiology, to the extent that women are dying because some doctors treat women like men. There is one thing that would save the lives of so many with Endometriosis: Listening to female patients. 

When I was diagnosed with endometriosis last year I was told it had been growing for up to 8 years. I had debilitating periods my whole life, to the point where I couldn’t attend school, couldn’t move from bed every month. I was told that Ehlers Danlos Syndrome makes period pain worse, so thought I just had to deal with it like every other symptom. Due to gaslighting from doctors and teachers, I did not take my pain seriously. Constant pain is my normal, so I couldn’t tell the difference when the pain was fatal! Please don’t make the same mistake I did. Endometriosis is extremely serious, and many people don’t realise they may have it.

If you have endometriosis or any other chronic condition I want you to know this. You are not overreacting. You are not weak. You are not lazy. You are coping incredibly well with something that makes it nearly impossible to get out of bed each day and choose to continue living. 

❗️When I say women/female I mean the literal definition, those with female anatomy. This includes trans men, intersex people, and nonbinary people. 

Image Description: The words ‘Part of being a woman and dealing with reproductive health is being treated like you’re not human. Is being treated like you’re a robot, and you’re supposed to wake up every day and get over it – Halsey’ next to a drawing of Halsey

Categories
Blog Posts

Feeling Ill?

Things that helped me survive Covid, and should help you cope with any illness:

💉 Vaccines!!!

🫁 Deep Breathing Exercises

🧊 Migraine Patches

🍯 Honey, lemon, ginger & apple cider vinegar in hot water (a dream for sore throats!) 

🧼 Bubble Baths

🍋 Honey & Lemon flavour chloraseptic anaesthetic throat spray

🍊 Vitamin C & Probiotic

🤧 When you’re sick, do less than you feel able to, fatigue is hard to deal with so don’t go back to your ‘normal’ too soon! Take any exercise or movement gently.

😴 Make sure you rest as much as you can, put on a good TV show or your comfort movie, sleep lots, and keep drinking water and warm drinks. My chosen distraction was The Good Place, a show that I can confirm only gets better with rewatching!

😘 Your work and other responsibilities can wait. Nothing is more important than your own health so try to clear your plans and schedule time to just heal. (this is harder to do in practice, of course!)

Sickness on top of chronic illness or disability is hard for so many reasons, so if you, like me, have to deal with both, I hope you are really proud of yourself! Your strength is hardly ever recognised and even less frequently celebrated, but I see you. You’re doing great, sweet tea 🤪☕️

Categories
Blog Posts

International Women’s Day

March is Endometriosis Awareness month, one of the most painful conditions in the world that effects 190 million women worldwide. Learn more about it here

Here’s to taking up space. Here’s to using exclamation marks in emails without shame. Here’s to loving things so much you can’t not talk about them!!! 🥂 

Feminism isn’t about the ideal of who you should be, or about taking advantage of the opportunities that women before us didn’t have, it’s about doing whatever you want to do because you are able to choose 🎠 

Today, #InternationalWomensDay , is about raising awareness for the fact that SO MANY women still don’t have a choice. So if you do, choose to advocate for all women’s rights, not just those who look like you and share your experiences. But most importantly, choose rest, choose joy, choose looking after yourself 💛

Categories
Blog Posts

‘Survival of the Fittest’

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change.

Charles Darwin

Charles Darwin is often used to back eugenics. Disguised as ‘natural selection’ and ‘survival of the fittest’ some people believe that vulnerable people dying is absolutely fine. That has been made more than clear during the pandemic. But evolution does not mean eradicating disability, disability will always exist. This is what Darwin actually said: ‘It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change.’ And who is the most adaptable to change? Disabled people. We have to adapt every single day. 

It is on society to develop technology and accessible design so that disabilities aren’t as limiting as they are today. Just as glasses mean that lots of visually impaired people can see to the extent they are not even considered disabled. Just as wheelchairs mean that many disabled people are able to be independent. Imagine if we developed painkillers to help those in chronic pain. If we protected each other from viruses to prevent chronic fatigue. If we funded mental health services to assist those with anxiety, ocd, and depression. If we promoted education about autism rather than trying to ‘cure’ it. Imagine a world where disability isn’t a tragedy, but a springboard for innovation! 

Humans should not be defined by their ability. We are inherently worthy of love, and we should never need to prove it. Oh, and by the way, Darwin was disabled. 

Categories
Blog Posts

100%

Something I like to think about is how my body has got me through 100% of the painful days so far. 

For all of the resentment I give my body for being broken, for not working properly, for hurting, for betraying me… it deserves credit for surviving. Survival is pretty much the only comfort there is when you’re chronically ill. I can’t tell myself I will recover. I can’t say I will feel better tomorrow, next week, or even next year. It’s another thing that is taken away, the comfort of recovery, the ability to imagine a future where I am ‘better’. In the midst of agony, I can tell myself it is temporary, but I won’t believe it. Because my pain is not temporary, it’s chronic. That means it doesn’t end, it just becomes different. Worse, maybe. Quieter, hopefully. Gone, never. But I have hope. 

I have hope that a painkiller that doesn’t give me side effects and does take away my pain is discovered. I have knowledge that new video games will be created that I can escape into briefly. And I have thoughts that tell me ‘You’ve survived before, and you can do it again. Your attendance record at life is 100%’

Categories
Blog Posts Blog Posts

I got Covid…


It’s been 2 years.

Of fearing for my life. Of being told by people I loved that if I died that was just ‘the way the cookie crumbled’. Of having ‘survival of the fittest’ and ‘natural selection’ shoved down my throat as if they are not eugenics.

In January, I tested positive for Covid-19. Thanks to the vaccines, I am alive. But the process of getting vaccinated is not safe/supportive enough for chronically ill people. This was preventable. This could have been avoided. But now this is the world we live in… a world where disabled people are made to feel unsafe. Where they know that, in the eyes of the government, and many members of the public, they are expendable. I am grateful to be alive and I am scared of living. 

Things that helped me survive Covid:

💉 Vaccines!!!

🫁 Deep Breathing Exercises

🧊 Migraine Patches

🍯 Honey, lemon, ginger & apple cider vinegar in hot water (a dream for sore throats!) 

🧼 Bubble Baths

🍋 Honey & Lemon flavour chloraseptic anaesthetic throat spray

🍊 Vitamin C & Probiotic

🤧 When you’re sick, do less than you feel able to, fatigue is hard to deal with so don’t go back to your ‘normal’ too soon! Take any exercise or movement gently.

😴 Make sure you rest as much as you can, put on a good TV show or your comfort movie, sleep lots, and keep drinking water and warm drinks. My chosen distraction was The Good Place, a show that I can confirm only gets better with rewatching!

😘 Your work and other responsibilities can wait. Nothing is more important than your own health so try to clear your plans and schedule time to just heal. (this is harder to do in practice, of course!)

Sickness on top of chronic illness or disability is hard for so many reasons, so if you, like me, have to deal with both, I hope you are really proud of yourself! Your strength is hardly ever recognised and even less frequently celebrated, but I see you. You’re doing great, sweet tea 🤪☕️

Categories
Blog Posts

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!

Categories
Blog Posts

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