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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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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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‘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 🤪☕️

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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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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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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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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!