Ableism, Plastic Waste and Everything

So, a phrase I use a lot is “every day ableism”. If you’re wondering what I mean by that you’re in luck, I’m about to tell you. Every day ableism is the little stuff, those small, seemingly trivial things that your every day abled person doesn’t think twice about. Think parked cars on the pavement, high bar tops in the pub, that sort of stuff.

Today the every day ableism we’ll be talking about is the conversation around reducing your carbon footprint and single plastic usage. I want to start this off by saying I am in no way anti environmentalism. I’ve been recycling my whole life, I shout at people for littering and I regularly rant about how disgusting it is that humans are destroying the Earth. I am, however, quite saddened by how much of the conversation around reducing our carbon footprint and use of single use plastic is inherently ableist. I’ve found several of the most common suggestions made to make yourself greener and I’ll be pointing out the everyday ableism present. Ready? Ok.

1.    Walk and cycle to where you want to go (school, work etc). Avoid driving as much as possible.

I’ve started out nice and simple with this one. I’m sure even the most ignorant person in the world could see the everyday ableism in this one. As much as I would love to be able to walk down to my local town centre or jump on a bike to go see my friends, I cannot. Because I am disabled. Also because I never learned to ride a bike but primarily, it’s because I’m disabled. Even on the days where I have enough energy to get up and leave the house, there is no way I would be able to walk for that long. I rely on being driven places, whether that be in a car or on public transport. There are so many people for whom not using a CO2 producing petrol wagon is not an option.

2.    Buy your produce from a local farm/market.

This one really irritates me every time I hear it. So many people of us disabled folk cannot get to a local farm or market. Particularly if we’re expected to walk or cycle to it. Even once they were there, the economic inactivity rate (not in work and not looking for it) for working aged people with disabilities is 44.2%. Our benefits are in the process of being messed about so many of us are skint. The employment rate for disabled people is 50.7% versus 81.1% for able bodied people [source]. You think we can afford to pay the price of produce at a local farm?

3. If buying local isn’t an option, do not buy pre-prepared, plastic laden fruit and veg.

That pre-prepared fruit and veg that people love to demonise is an absolute lifesaver for many disabled people. If you’re fatigued, it takes a tiring step out of making dinner. If your grip or dexterity is not great, preparing fruit and vegetables is really tough. If you aren’t able to reach the fruit/veg of your choice because supermarkets stack the containers so they’re sometimes completely inaccessible to disabled people, you can still have the thing you want. What are we supposed to do, if we’re not buying the pre-prepped stuff in plastic? Never eat certain fruit or veg again?   

4. Get the loose stuff, put it in a paper bag and prepare yourself at home.

So, I should say that I use a walking stick to get around. As such, I only ever have one free hand when I’m out and about. If you are able bodied, I want you to try and imagine being in a supermarket and attempting to get one of those little produce bags, open it, pick out your produce, bag it up then put it in a basket/trolley all with one hand. Sound like a nightmare? Now try and imagine doing that with a paper bag, a bag you cannot turn inside out to aid in the picking up process, a bag with no handles to hook your hand through, a bag that could quite easily tear at any point during this process requiring you to start over again. Do you get what I mean? Also, see my point above about people who cannot prepare fruit and vegetables themselves.

5.    Take showers rather than baths.

Showers are great aren’t they? You get to stand there as the water cascades around you, it loosens up your muscles and you can do that thing where it looks like jets of water are coming out of your fingers. Unless, like me, you can’t stand up in the shower. As a result, I take baths. I have adapted stuff in my bathroom that makes the whole process easier but I do have to bath rather than shower and this is the case for a lot of people. Yes, you can get shower seats but many people can’t use those due to not being able to get themselves on/off the seat/their shower not being the right size/needing assistance washing and bathing.

6.    Avoid/ban all single use plastic.

I saw a wonderful Twitter thread today by @thelionmachine wherein they discussed how people are advocating for the ban of single use plastics without considering how we would then keep medical equipment/procedures sterile and safe. It got me thinking about just how much single use plastic I deal with every day via my medication. I will not bore you with the details of every single bit of medication I am on, suffice to say that is is A Lot. And almost every single one of those medications comes in non-recyclable plastic packaging. Is that a problem, all that single use plastic? Absolutely. But what’s the alternative? Medication needs to be kept in a sterile environment, a lot could go wrong if it was not. Could I have a single container and then go to the pharmacy when it was running low to get it refilled? Theoretically yes, except this would require an overhaul of how pharmacies work as well as relying on me being well enough to go to the pharmacy before my meds run out. Even if I managed to avoid single use plastic in every other aspect of my life, I would still generate more than all of that combined through simply needing to take my medication on the daily.

And that’s just a few of the points brought up in this plastic reduction and carbon footprint conversation. Do I think anyone arguing those points is being intentionally discriminatory against people with disabilities? I do not. But the whole idea of everyday ableism is that people simply do not consider how things affect us. The discrimination comes from us not being considered at all.

I’m going to keep doing these everyday ableism posts. If there’s even the slightest chance that an abled bodied person will stumble across them and go “huh, I never thought of it like that” or a disabled person finds them and can relate, it’s worth it.

I hope I've given you something to think about. I also hope you've got a nice dinner tonight.

Talk to you later!

Emma 

xoxo

Alexa, define "commitment issues"

Dear Reader,

I'm back! And I'm sticking with it. It's been 18 months and I'm back, I'm Emma 2.0 with more passion and rambling.

So, really this is just a reintroduction before I start posting regularly again. Shall we get reacquainted?

I'm still Emma, that bit hasn't changed. I am very nearly 25 now though, meaning I'm about to go into a new age bracket.

I still have a brain tumour, that hasn't changed either. I have upgraded my standard NHS issue crutch to a stylish ergonomic walking stick which fits my aesthetic much more. It is black. I wear a lot of black.

I have a lot to say and I'm excited to say it so my next post will be up soon.

I hope you've had a wonderful Monday!

Emma
xoxo

Never Underestimate the Healing Power of a Good Risotto

Dear Reader

As you know from my last post, I haven't been having a stellar time at the moment.  About two years worth of carefully built walls have started to crumble and I have not been dealing with it very well.  But today, I want to tell you about something I always forget can put me in a much better mood.

This evening, I had dinner with a friend.  I will call her N.  N and I have been friends for about 10 years now (excluding a huge fight we once had) and she is honestly fabulous.  N has this amazing gift that is present in so few people.  Regardless of my mood, my problems, everything else going on in my life, she can make me laugh til I am in pain.  Full on belly laughing complete with ugly faces and tears streaming down my cheeks.  It is magical and she is wonderful.

Have you ever noticed that different people react different ways to not good medical news?  Some will make inappropriate jokes because they don't know what to say.  Some will immediately start talking about problems of their own.  Some will be emotional (my poor boyfriend once had a woman burst into tears when he mentioned I had a tumour).  And then some, the glorious people like N, will do what I consider the best course of action.  They will never stop you talking about it, they will listen and sympathise.  They may ask questions or clarify some details.  But they will never let you sit there and throw yourself a pity party.  They remind you that you are still a person, the same person, and you are not to let this dictate your whole life.

They will remind you that not being able to drink does not mean you cannot go to bars.  Not being able to carry a basket or push a trolley doesn't mean you can't go shopping.  Having headaches doesn't mean you can't go to gigs.  Regular nausea doesn't mean you can't be a foodie.  N is my grounding force, my constant reminder that illness is just a part of me and it does not define me.  The fact that she says things like "what would you say if I told you that I loved bread?" to waiters is just a bonus.

The point of this is, spend time with your friends.  Laughter truly is the best medicine and I feel better now than I have done in a very long time.  A few giggles in a Sainsbury's can do that for you.

Sorry it's Monday folks but have a wonderful week and I'll talk to you soon!

Emma
xoxo

Bad Days Happen

Dear Reader

It is 1.43am as I write this.  "What are you doing up at this hour?" I hear you cry.  Well, I'm not having the best time right now and I thought "hey, why not write about it?"  So here I am.  This will probably not be the most brilliantly written piece of work.  But it is from the heart and mind of someone who is really struggling right now so please cut me some slack.  Here we go.

You know how sometimes you'll be lying awake, unable to sleep, thinking about everything you don't let yourself think about during the day?  Well, I have been thinking about how I am going to die.  It's a very morbid topic to get stuck on isn't it?  I'm sure everyone thinks about it from time to time.  Death is a natural part of life and most of the time, I am not afraid of it.  But I am right now.

I should explain.  As you know, I have a brain tumour.  I have come to terms with that and I have accepted that it is part of my life.  What I am stuck on is what that tumour is doing to my life.  It is restricting me and it is cutting my life short.  It's a scary thing, to realise that it's a very real possibility that everyone you know, love, care about is probably going to outlive you.  Writing it down is like saying it out loud for the first time. Like I'm truly understanding what it is I have been ignoring for the past two years.  I have something horrible, incurable, inoperable and all around fucked up and no amount of ignoring it will make that go away.  I am not going to live the life my friends are going to live.  I am going to die, sooner than most people, and there is not a thing I can do about that.

As I said, I accepted a long time ago that death is an inevitable part of the human condition.  I'm not scared of death.  I'm scared of not living.  Does that make sense?  I'm scared that I won't live to see my friends get married, have kids, kick arse in their careers.  I'm scared I won't get to joke with my parents about sending them to retirement homes.  I'm scared I won't get to go to my brother's wedding.  I'm scared I won't get to see my niece's first day at school and talk to her about the boys or girls she thinks are cute.  I'm scared I won't get to freak out over my first grey hair or my first proper wrinkle.  I'm scared that the rest of my life I intend to spend with my boyfriend might be much less time than I want to give him.  It is terrifying to think about not living.

This is not just a pity party for me, I promise.  I'm not just scared of that.  I'm scared of what my not living will do to the people I care about.  I don't want them to have to cope with me dying or try to figure out how to navigate their lives without me.  I don't want my name to come up in conversation and be a cause of sadness.  I don't want them to have to miss me.

I know a lot of other people feel this way.  This illness is a bitch and what it takes from you is immense.  Fighting this fight every day is exhausting.  You cannot be brave all the time and that is okay.  It is okay to break down and cry.  It's okay to be angry and lost and to want to scream THIS IS NOT FAIR from the rooftops.  Because it isn't fair.  It will never, ever be fair.

If you feel like this, please find someone to talk to.  If you want to talk to a stranger, call Samaritans.  They are an amazing bunch of people and sometimes, just talking can make a world of difference.  I promise.

And whether you're ill, in any way, or healthy as a horse please remember that bad days happen and that is okay.  We all have bad days but it can't rain all the time.

I'll write again soon.

Emma
xoxo

I Can't Believe it's Another Chronic Illness

Dear Reader

Hello and sorry I haven't written for a week.  I have had a lot of stuff going on.  Have I told you that I'm at university.  I'm doing an Open Degree with the Open University which is amazing as I can do all my work and lectures from home.  For someone who sometimes can't get out of bed for days at a time, this is a big deal.  Anyway, my final assignment for the year is due in on Thursday and I have been working very hard on it.

Also, I've been in hospital.  After a very long winded situation involving grumpy radiographers, being bounced from pillar to post several times and a brilliantly eccentric GP, I ended up seeing a pelvic pain specialist and I have been diagnosed with endometriosis.  It's a super common thing and (although my mother did not mention it) it apparently runs in my family.  The problem is, it's causing adhesions (sticky tissue that forms a connection between parts of the body that don't usually touch) that have attached my left ovary to my bowel and let me tell you, it hurts like a bitch.  You think I'd be used to living with near constant pain by now right?  Well I'm not.  I'm not sure it's a thing anyone ever gets used to but I am not and will not ever let it stop me from living my life. So, I might need surgery to remove the adhesions.  And that'll be an annoyance but I will deal with it.

This reminds me of something I mentioned to my friend T the other day and something I think enough people need to be aware of.  She was sad because some of her old clothes didn't fit and then apologised for complaining about it because it wasn't a big deal.  Well, you know what?  Listen closely now.  Problems are relative.  There is no grading scale for the seriousness of your problem.  Your problem is not made trivial by the fact that other people are going through worse.  If you are upset because a top you used to love doesn't fit you any more, you do not need to cover up that sadness because your best friend has a chronic illness.  Be sad, be angry, be miserable.  On the flip side of that, you're allowed to be happy about things even if your friends are suffering.  Do you really think your friend wants you to be sad all the time because they're having a tough time?  I guarantee they don't, because they are your friend and they love you.  Be happy, be excited, be ecstatic.  All your emotions are valid.

On a somewhat lighter note, I'm refurbishing my entire bedroom soon and I'll treat you to some pictures because I am very excited about this.

I hope you've had a wonderful day, have a wonderful week and I'll talk to you soon!

Emma
xoxo

If a smoothie bowl doesn't have avocado in, is it even 2017?

Dear Reader

Oh, where to begin describing my Sunday?  How about when my poor boyfriend had to put up with the worst thing in the Western world, me in the morning.  You know those people who wake up energised and ready to face the day ahead? They splash their face with cool water and chug some green juice and do their yoga in the light of dawn?  I am the opposite of those people.  I am grumpy and annoyed and I will bark orders at everyone until I have had at least one cup of coffee, some toast and a solid 15 minutes on my vape.  So why, you may wonder, did I spend the day at a health and wellness festival surrounded by human incarnations of the sun?  Partly because I wanted some freebies (no shame) but mostly because I hear this health and wellness stuff can help with some of the icky side effects of a chronic health problem.

Don't get me wrong, I'm not suggesting we all shun traditional medicine and start slathering our naked bodies with mushed up kale (unless that's your thing, in which case carry on doing you).  I just think there might be something in this whole "healthy living" thing, provided it's carried out properly and the experts have proper credentials.  And I had a really good time!  I spent a fair bit of coin but I met some amazing, incredible people and had some vegan doughnuts that rocked my world.  Seriously.  They were so good.

But honestly, I really do think there is something in looking after yourself and the management of chronic conditions.  Like, do I think that regular consumption of turmeric and cayenne pepper will shrink my tumour?  Not at all.  But do I think that meditating to try and help my focus, increasing my antioxidant intake to combat fatigue and healthy snacking to avoid nausea will work?  I can believe that and I'm giving it a shot.

If you want to maybe give it a go too and need any recommendations, brands or anything let me know.  I'm always here to help.

I hope your Monday wasn't too terrible and I'll talk to you later!

Emma
xoxo

How many espressos is too many espressos?

Dear Reader

Happy Saturday!  I still get excited for the weekend, despite it technically being no different to a weekday for me.  It must be the second hand excitement of everyone around me screaming "IT'S SATURDAY" and running to the nearest beer garden.  I on the other hand, tend to spend my Saturdays working.  Currently, I am working on my EMA for university and while it is only a 1500 word essay I am finding it daunting.  So, where is best for me to work and not have an absolute meltdown?  A café.  Where can I find a café that will provide me with constant refills of amazing coffee and not judge my weird pen sucking habit?  At my boyfriend's café.  It has this wonderful living room type feel and you can't help but feel cosy and at home in there.

I have gone overboard on the caffeine today though.  I can feel it.  You know when you want to laugh but you don't know what's funny?  Imagine that times ten and that is how I currently feel.  My brother is supposed to be bringing my niece in to visit the café today.  I cannot let her see me like this.

I'm having a good pain day today (touch wood) but it isn't always like this.  Sometimes the headaches are so bad I can't actually leave bed or do anything, which sucks.  Audiobooks are a godsend for those days.  Any of you out there who feel like you spend too much time lounging in bed doing nothing because of pain, or sadness or anything?  Invest in an Audible membership or, if you don't want to spend money, listen to podcasts.  I do a mix of both.  Currently I've got Career of Evil, the third book in the Cormoran Strike series, on the go and it is a m a z i n g.  Seriously, I could not recommend it more.

I've gone off topic.  I was going to say that unfortunately, with a good pain day often comes a poor muscle control day or a poor focus day.  Today I suspect the latter.  My mind is jumping about all over the place and I don't know how I'm going to plan out this work.  In moods like this, I often find it's easiest to do something like a mindmap, where you sort of need to jump all over the place.  That is what I've been doing and while there isn't much on it by way of actual information, it looks beautiful and really, isn't that what really makes a good piece of study material?

I hope you're having a wonderful weekend.  I shall write again on Monday and tell you all about how the cool thing that I'm going to on Sunday went.

Emma
xoxo