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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, my mother and I decided to get hospital transport for a hospital appointment in London so that 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 because 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, would be the solution, 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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How to Date a Disabled Person

‘Don’t Miss Out!’

Andrew

This is a guest post from my partner, sharing his top 5 pieces of advice after dating me (a disabled person) for 3 years. Obviously this is based on our relationship, and therefore is not about casually dating, though some of these tips might be helpful for both! – Blossom

Communicate

It’s the most important thing in any relationship, but it’s particularly important when someone is disabled. This is because you have to learn each other’s limitations. Make sure you are both comfortable enough to ask questions to quicken the learning process.

Plan

Make them as comfortable as possible by planning everything before hand. This will mean they aren’t as stressed about going out because they can prepare beforehand and also adapt the plan if they feel like it’s too much. Examples of planning a trip with a disabled person can be found here!

Nobody is a Burden

Make sure your partner does not feel like a burden. Just because they don’t have the same abilities as you doesn’t mean they can’t be fun or do fun things, it just means you might have to get a bit creative with activities. So don’t pressure anyone into doing things or assume what they can/can’t do. This could be anything from going on a walk to intimacy.

Understand

A Relationship with a disabled person might get serious more quickly than others- this isn’t something to be frightened by. The reason this happens is because they often have to think a lot more about the future than other people. Don’t be scared by this, just take it as a compliment and move on. It doesn’t mean they want to get married this second, it only means they have to think about things in more depth sometimes.

Adapt

Everyday is different- Chronically Ill people can have very fluctuating energy levels and this means that one day they could be feeling ok and they next they are in more pain or too tired to do anything. Just remain flexible and make sure you are ready to help on the bad days. You can do this by asking questions like ‘what do you need right now’, ‘Can I do anything for you?’, ‘Do you need *insert medication, hot water bottle, drink, etcetera!*’ Once you know the person better you will be able to anticipate their needs more, like turning on their comfort show during a flare up or having their favourite drink prepared before they ask!

Some of the most funny and interesting people are disabled! Don’t miss out on great people just because of presumptions you’ve made about them.

How to Date a Disabled Person

Written by Andrew

Every relationship has difficulties, and every relationship will probably be impacted by illness at some point, so don’t be afraid of the unknown! Disabled people are just people, we all have different needs and likes and dislikes, complexities and flaws. If you both want to be with each other, there’s nothing you can’t work through together. Thanks for reading!

HB x

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Planning A Trip with Disabled Person

After plenty of stressful trips out, I have quickly learnt that my version of spontaneity has to be carefully constructed. This is a list of advice that I wish I had known when my mobility first started declining, and it’s something I would have sent friends to help them understand my needs better. I hope it helps you. A few reminders for people like me before we get into it:

It is ALWAYS okay to ask for help

You are not a burden, you just have needs. Name a human who doesn’t!

Life can still be fun, even if you are disabled/chronically ill

A note to friends/family/partners/colleagues of disabled people:

Holidays or day outs can be infinitely more complicated when one member of your party is ill or has a disability. But this is no reason to exclude them! You should research their condition if they’ve shared it with you, and invite them even if you think they’ll say no. It is so important to make sure you don’t make anyone feel left out! Having fun with a disabled person just means you need to put a little bit more effort into planning, and you will develop skills that will help you be a better human being because of this.

10 Tips for planning a trip with a Disabled Person

  1. Phone a venue ahead to check accessibility
  2. Book accessible tickets for a movie, play, concert, or event
  3. Check how near parking is to where you want to visit, see if there’s disabled parking if you have a blue badge
  4. Research the area you’re visiting to see how flat it is, what the weather is like, how many allergen friendly restaurants there are, etc.
  5. Before you leave, make sure you have a bag packed for everything you might need in case of an emergency. This varies depending on the disability but could include portable ice or heat packs, an epipen, a tens machine a salty or sugary snack, and maybe keep a first aid kit with you!
  6. Ask what plan your disabled friend is most comfortable with (for example, a picnic might be less stress than going out to eat because you have more control over the food)
  7. Show your disabled friend the menu of where you’re going to eat so they can check for allergens or safe food, or make sure you’ve eaten before hand so that food can be avoided
  8. Check for accessibile places using a helpful websites like these  MeIncludedEuan’s GuideAccessAble or the Sociability App!
  9. If you really have your heart set on an activity but know that your friend can’t manage it, why not invite them over afterwards, or plan a more accessible activity on a different day!
  10. Get travel insurance

More advice can be found here!

Perks

There are plenty of perks to going out with a disabled person- Many places offer a concession, allowing one free admission with each disabled person’s ticket, a disabled parking badge gives you free parking, and depending on the situation you can even skip queues!

Access in a lot of places suck, and ableism is everywhere, so even if you’re alone, please advocate for access so that it will be easier for the next person who is disabled!

Don’t forget to send this list to a friend!

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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?

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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. 

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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

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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 🤪☕️

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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 💛

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‘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. 

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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%’

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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 🤪☕️