Disabled People Should Use Alternatives to Plastic Straws, Right?

Hello Readers!

I somewhat decided that I wasn’t going to talk about the topic of plastic straws on this blog. But today I think I have to. I am not the only one talking about it this week. This morning Chronically Unimaginable also wrote a blog on it. The reason for multiple discussions this week is because I awoke to the news that gave me a heavy heart. The UK is officially banning plastic straws. Don’t get me wrong, I hate the idea that plastic is damaging the earth and animals. I mean I’m a vegetarian. I love animals and the earth.

The issue is, disabled people need plastic straws.

Just two days ago, I couldn’t stand or sit up at all. That meant I couldn’t drink water and became dehydrated. However, plastic straws saved me. It meant that I could hold the water and position the straw to manipulate the water into my mouth without having to harm myself. I am not the only one who needs straws in order to survive, millions of disabled people do.

Now, I get what you’re thinking, Bethany, there are a hundred alternatives! You’re right, there are, however, none are appropriate for the disabled. Instead of me just saying they don’t work and leaving it at that, I am going to look at each straw type.

For straws to be disabled friendly it needs to contain certain characteristics. These are, positionable, safe for high temperatures, cheap to buy, and a low injury risk. Okay, let’s discuss the straw alternatives.

Metal Straws

They have a large injury risk. Often disabled people have painful spasms in their hands and/or mouth. For me, that means I can hurt my hand quite badly hitting the straw, as well as my jaw. It can make me bleed, and scar. On top of that, you can’t position it. When you can’t sit up, the water will have to be tilted enough where it spills everywhere. On top of that, they are expensive. One would need at least three straws a day. (One for water, one for tea/coffee, and for other drinks like orange juice). Cleaning the straws are extremely difficult, especially with those like me who have fine motor control issues and spasms. Therefore, one will need many straws because most of us cannot afford carers to come in every day. These are so not practical.

Bamboo Straws

Out of all the options, these ones aren’t too bad. However, they have an injury risk, are extremely expensive and also not positionable. Once again, offering the same issues as metal straws.

Glass Straws: These are so high for injury risk. This is both due to the past mentioned spasms and because of the breakable factor. If I fell over with a glass straw, I would most likely cut myself and struggle to clean up all of the mess. Again, it’s also really expensive. We spend so much money on all of our other needs that we can’t afford more. I had to take a third of my daily dose for years because I couldn’t afford the full dose until finally stopped taking them. The last thing I need is more things to buy that are expensive. On top of all of that, the straws aren’t temperature safe. How am I meant to drink my copious amounts of tea?!

Silicone Straws

This is the first one so far that has no injury risk. Saying that they aren’t positionable and are expensive.

Acrylic Straws

 These once again have an injury risk. They are also expensive and not positionable.

Paper Straws

 These are a choking hazard, they aren’t positionable nor are they temperature safe. Plus, let’s be honest, paper straws turn into mush way too fast. How do people drink fast enough? On the plus side, they are affordable.

Pasta Straws

 This is also a choking hazard and injury risk. It is also, not positionable or temperature safe.

Plastic Straws

 These are affordable, positionable, have no injury risk or choking hazard. Plus, I can have my tea with them!

I’m not denying that plastic straws don’t have issues or that the alternatives don’t have good points. All I’m saying is that for people with disabilities they are necessary, at least for now. I know that in the UK plastic straws are available on request in cafes. But what about in the supermarkets? I sit in a wheelchair and have been declined plastic straws because “it isn’t necessary for me.” How are we supposed to combat those who don’t believe that we are disabled enough?

I know that it’s complicated and difficult. I want to save the animals and planet so much, but there are better ways. Cut out eating fish, the plastic from them are killing way more turtles. Buy fruit that isn’t packaged in plastic. There are so many other options but please listen to us about straws. Let’s stop the constant attack.

Please be kind to one another and yourself! See you next week.

Bethany.

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We Are More Than One Thing & So Are Our Careers

Hi Everybody,

Today we’re going to do something a little different. Instead of talking about disabilities I want to discuss another topic, identity.

One of the best pieces of advice that I have ever heard was a simple three words. “Diversify your identity” – Hank Green. It’s a simple bit of advice really, but it’s never talked about.

As a 22-year-old, I and everyone around me are struggling with the classic issues of ‘what to do with my life?’. It’s a tough conundrum that I never think that there’s an answer for it – or at least not a simple one. But it seems to me that it’s the wrong question.

People usually choose their carer based on their identity. For example, one identifies themselves as a writer they often chose to be a novelist or blogger. If your identity is in how smart you are and your love for chemistry, you may choose to be a biochemist. These are all great decisions, but I think what the struggle is the idea that we’re meant to do or be one thing for the rest of our lives. Being a biochemist forever can seem overwhelming and suffocating. That notion is drilled into us from the second we can communicate. It’s one of the first things that people ask to make conversation. Kids always seem to say the classic ‘Rockstar’ or ‘actor’. It’s then that the seed of being one thing forever gets planted. From that second, constantly grows. Cut to now when everyone is freaking out, all because we have to abide by this societal rule. One career type until we die

What no one seems to acknowledge is that there have been teachers who turned into comedians. Actors who have become nurses, and everything in between. See, no matter what everyone claims, humans aren’t designed to live their life with only one goal. You have a goal for right now and see what happens. All of these goals usually revolve around identity.

Most people talk to me for an hour and see that my identity is wrapped up in my disability and writing. However, we as a race are not that simple. My identity also comes from God, being a nerd, psychology, creating projects and a plethora of other things. Right now, my goal is to be a novelist. But in ten years who knows where or what I will be? I may be a teacher, or a disability advocate, or a podcaster, or a scientist. All of the things I do in my life, all the career shifts and different ideas will not be a mistake. They will all be a part of my journey and what I needed at that time.

Identity is flexible but the danger comes from it being based on only one thing. That is where Hank’s quote becomes so important. If my writing career got ripped away from me, it would be horrible. However, I know that I would survive and that my future has options past this writing. I know that who I am is more important than my career. If we diversify our identity, there is so much more out there for us. We deserve to explore that.

Please don’t buy into the lie that one thing defines us. That our career decisions at 18 are the ones we must stick with. Go with your joys and passions. Breathe because there is more to your life than what you see right in front of you. Take it one day at a time.

I hope that you guys didn’t mind me stepping away from the disability topic this week. Thank you for reading.

Please, remember to be kind to yourself and those around you.

Bethany

Disabilities Produce Anxiety in Unexpected Ways

Hello Everybody,

Last night I found myself in a tailspin of anxiety that made me cry for about an hour. It sounds dramatic, and if I’m being honest it was. You see, I went to the pharmacist to pick up my prescription. When I got home, I saw that the medication was different from my normal ones. Technically, they were the same medication, however, the brand was different. I’ve talked before about how I have had reactions from changes to medications. It wasn’t a pleasant time. In fact, it was only a month ago when my last round of reactions happened. Hence the panic when once again my medications were altered.

After I calmed down, this experience got me thinking. Anxiety often goes hand in hand with disabilities. This works in two-fold.

Firstly, there is anxiety towards people and going outside. I have talked about this before, but it is so important. Going anywhere new is absolutely terrifying. Not knowing if you will even be able to get in the place or if you’ll have to make everyone change their plans for you. It’s a horrible feeling, and to be honest it makes me not want to try anything new. If it’s not the anxiety, it’s the guilt of ruining my friend’s plans.

On top of that, going out is anxiety provoking based on the people around me. Depending on the situation, places can often feel claustrophobic and crowded. As a wheelchair user, I am shorter than almost everyone around me. As a result, when the place is crowded, I am often avoiding handbags and elbows. Unfortunately, that often means that I am hit in the face without the people noticing what they did.

Anxiety plays a role in going out beside the physical challenges. Every time I’m in public I can feel that niggling in my chest as anxiety goes from a tackle to a giant ball. I get nervous about the public around and how they will react to me. Will they stare? Will they make a rude comment or threaten me for the hundredth time? Will I be unsafe? There have been many times throughout my life where I haven’t felt safe in public due to my disability. It makes me often wonder if that will ever stop; will I be stuck in this cycle forever?

The second part of this disabled related fear has nothing to do with people. The anxiety, at least for me, one inside my body. Getting a disability isn’t exactly rare, however, there are a lot of more able people in the world. For a long time, I felt as if my body had betrayed me. If it could do that once who knows what else might happen. I don’t so much now, however, I am aware that having my disability opens me up to a myriad of complications. For example, I’m more likely to have a seizure than any abled, healthy person. I’m high risk for blood clots, including fatal ones, and many others. The medications increase all of these risks and add new ones. So, as I’m sure you can imagine anxiety is very high in disabled communities. To be honest, it sucks. But I also think it’s important to share because I need people to see that they aren’t alone! You are not crazy for being anxious, you’re allowed to be. But also, please go get the help you deserve. This doesn’t have to be forever. You can do this.

Until I see you next, please be kind to one another and to yourself.

Bethany

#WhyDisabledPeopleDropout is Showing the Horrors of Being a Disabled Student

Hello, everybody and welcome to May!

 

Recently, I have been scrolling through Twitter and one hashtag keeps popping up. It is, #WhyDisabledPeopleDropout. It was made to bring attention to the unique struggles that disabled students face. This sparked a myriad of responses. A large proportion spoke about the lack of support from staff. As well as, accessibility issues, and general chronic illness.

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Here, Kayle Hill discussed the ongoing struggle of not being able to get to classrooms. Meaning that we are segregated from the campus and other people. However, the staff puts this issue at the bottom of the totem pole, which is very common.

 

In another post, Sarah Brunke puts a lot of our problems in a very simple sentence:

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Many others discussed people accusing us of “special treatment.” Including the professors not understanding us in any way.

 

University is hard for everyone but having a disability on top of the already ever-growing stresses can make it feel impossible. Having said that, I thought I would share my experiences with the university. I am currently doing my second degree. This one is all online which makes it very hard. I can’t explain my condition to my lecturers. I have very little communication with anyone relating to the course. However, if I am having a bad day, I can take the morning off with ease, and do whatever I need to do to function. Saying that my first degree was on campus and I loved it. I know that my university was unique. I had an amazing disability support officer, and to be honest, I ignored my disability as much as I could. To be honest, it wasn’t healthy, and it destroyed my body to the point where I was in bed for almost two years. But I managed to survive with somewhat decent grades.

 

I didn’t have high expectations when attending university. In fact, most of my fuel to survive came from my high school teachers telling me I wasn’t smart enough to do it. (Well, smart enough and it will be too difficult with my disability). The truth is, whilst my university experience was good — for the most part — my high school experience was horrific. My wheelchair couldn’t get into any of the classrooms. I had to park it outside of the classroom, walk inside and climb a step. I got accused of special treatment and attention seeking on almost a daily basis. In fact, one of those accusers was a teacher. I was forced to have a teaching aid because I got one D when no one else who got a D had to have one. I told the teacher’s I didn’t need or want one and they forced it, all because I’m disabled. I even got kicked out of a class I enjoyed all because they refused to move the class to a room without stairs. Yes, that’s right, they didn’t have a lift. Well, they did, except it NEVER worked. However, the real kick in the guts for me was sports sessions. Part of the school’s curriculum was five hours of sport a week. If you missed the bus you had to sit in a room in silence and write lines for the entire time. If you had an injury, you also had to sit in the room. On occasion, we were allowed to do homework but most of the time we still had to write lines. For me, that meant that I spent five hours a week being punished for the fact that my legs can’t do netball. I’m sorry, but what kind of garbage is that? My parents and I kept complaining but no one would do anything until my senior year. At one point my vice principal claimed that she gave me an option to go home but I preferred to stay in detention. Yeah, that seems legit. Who wouldn’t choose writing lines over the beach?

 

By the time I graduated, I had accepted this. I thought that was just how the world works and it was all I had to look forward to. I didn’t ever think education could be any different. So, when I say, I had very low expectations for university I mean, extremely almost non-existent ones. However, I was surprised, and was actually listened to!

 

I tell this story for two reasons. One is to shed a light on educational systems and disabilities. This is both for students and employees to try and have an idea about what it’s like for us. The second is for disabled students, I know it is so dang hard. I know it seems hopeless and horrific but doing university can be possible! It may require changing universities and kicking up a fuss, but if you want it, take it. You deserve to try and achieve your dreams. Please don’t let anyone take that away from you. Especially if the person trying to rip apart your dreams is just an ignorant human being. You deserve so much better and you’re not alone, I promise.

 

Until next time, be kind to one another.

See you next time,

Bethany

Is ‘Disabled’ Really an Offensive Word?

Hello, everybody!

For those who have asked, I am much better this week now that my medication has changed. Yay! Thank you for all your messages and support during this time. Now that my life is going back to normal, onwards and upwards, friends!

With that in mind, let’s discuss one of the latest ideas that have sent shockwaves through the disabled community. Earlier this week, it was announced that Clover Moore would like to outlaw the word, disabled. She is the Sydney Lord Mayor, in the City council. Later on, in this statement, she said that the word “will be as offensive as the N word.” The proposed new word is “Accessible Inclusion Seekers”. You can read more about this here and here, as well as all of the disabled communities’ reactions through this Twitter link.

I have so many thoughts about this, and to be honest most of them are problematic. However, I am trying to see this from both sides; so, let’s talk about the positives for a second. First off, it’s rare that disabilities have a conversation when it comes to city councils…so that’s cool. Also, someone is trying to help us, which can be quite rare too.

However, that help is thoroughly misguided. I don’t mean to be super negative, but I am against the outlawing. Partly because the word choice of seeker sounds terrible! It sounds like we are attention seekers. It adds to a large culture that believes that we are exaggerating our illnesses. This culture often claims not trying hard enough and only want the ‘benefits’. Seeker is the last term we need to be legally associated with us!

Also, who has the time to say, “I’m an access inclusive seeker?” It is such a time waster. More importantly what about those who have disabilities that affect their talking ability? It strips them of independence to talk about their own disability. In what universe is that fair? We don’t need another person to take away independence from us. Especially when it comes to something the majority of us don’t want.

The other reason I, and many others, are against this is why Moore wants to change the word. This idea was founded on the notion that ‘disabled’ is a bad word. This makes no sense. I will scream this until the day I die: there is nothing wrong with being disabled! It isn’t a dirty word! It is a part of me, it’s the same as me having blue eyes. Disabled isn’t offensive in any way. It’s like me calling you abled as an insult. Like how dare you have working body parts. It’s ridiculous and makes no sense. I have seen people compare disabled to the word ‘retard’ and base the offence off of that. However, they are two separate words. One has been used to describe and form parts of identity. The latter has been an extreme slur used for centuries to trap us and to bully. So, I’ll say it again, DISABLED IS NOT AN OFFENSIVE WORD. There is nothing wrong with us.

Now, here’s another issue with the premise: comparing disabled to the N word. Is an outrage. Now, I’m going to *metaphorically* tread carefully here. I am white and therefore have no idea what it is like to be a person of colour. However, the N-word is used to harm and as a form of bigotry, it will never be okay to use. Disabled is by no means anywhere near that level. Also, I don’t think someone who is white and knows very little about being a person of colour can be in charge of saying that anything is as offensive as the N word. She has no idea, and for that matter, she is an able-bodied person. Meaning she also has no idea what it is like to be disabled. Should people be allowed to make such big calls when they don’t know us and aren’t us?

I know the majority of this has been negative. However, I share all of this for a very important reason. Often people assume they know what’s best for us and go ahead doing that. However, it’s rare that anyone consults any disabled people! The truth is, we don’t need the word disabled to be banned. We need that same passion but towards real issues. Towards integration and acceptance; towards ramps and lifts. We need to be treated the same as anyone else, because shocker, we are! Spending millions to change this will lead likely to lead to more segregation. People are already confused with how to be around us – this will turn that flame into a fire. Ultimately, if you want to help us, great! But, please, please, please consult us before you do. We are smart and thoughtful and excited for a change. WE ARE USEFUL, please listen to us. That way we can make sure that the world gets better for us and future generations.

Thank you for reading. If you have any thoughts on this, I’d love to hear it.

Have a great week! Be kind to others, be kind to yourself, see you in a week.

Bethany

Disabilities Don’t Stay the Same

Hello readers!

The last week has been one of the most difficult weeks I’ve had in a long time. For five days, I had been having a headache, and every day it got worse. I struggled to keep my eyes open and felt underneath my eyes swelling. Not only that, but I had blurry vision, and my hair started falling out, and I had even more leg weakness than usual. After three days, I worked out that all of this was because of medication. The weird thing was that I have been on this medication for almost a year and a half. I stopped being able to move and was stuck in bed for days, in an insane amount of pain. After two days of trying to get a hold of a doctor, I found out that the formula of the medication had been changed. Afterwards, the doctor took me off of them, allowing my body to revert back to normal.

This chaos reminded and inspired me to explain an almost controversial part of being disabled. Disabilities are in a constant state of flux. They are not written in stone, where everything remains the same. Every day is different and shifting. Now, if you have a disability you are most likely very aware of this. it’s common knowledge and a part of life. However, often abled people aren’t aware of this. When I tell them this, more times than not, I am not believed. Hence why I said it was almost controversial and why this is such an important topic.

What I mean by disabilities fluctuate is not that they can disappear (if it’s permanent). More so that one day I could walk for 100km, and the next I can’t even take three steps. One day, I can walk all around the house, the next I can’t get to the shower. One day, I can focus for hours and do almost a whole week of work and then I can barely write a sentence.

There have been many times that I explain these examples and people get it. But when it is no longer an example but a reality that’s when things change. People get annoyed that I have to take my chair with me to places. They roll their eyes and tut when I say that I can’t get up today. People often have the ability to make me feel guilty and anxious as they accuse me of not wanting to hang out with them.

The truth is, of course, I want to be with people and do fun things, but that doesn’t mean I can! If you have a friend who has a disability, please, I beg of you be patient with them. But more than that, please believe them when they say that they cannot do something. Never accuse us of lying even if you don’t understand. Ultimately, as annoying as it is for you, it is a hundred times more annoying for us. We would love to do everything, but it isn’t that simple for us.

To those who are patient and do believe is, without doubt, all I can say is thank you, you are such a blessing

Before I go, I have gained more support from all of you wonderful people. I just wanted to tell you that I’m really grateful for that, thank you, everybody. You are so kind and generous with your words! I can’t wait to see where this blog takes me and the disabled community.

See you all in a week!

Bethany

Disabilities Don’t Need to be Fixed!

Hello everyone!

This week I thought that I would do a follow on from last week’s post about Dr Phil and his opinions of disabilities. In that post, I touched on the notion that disabled people aren’t a chore, amongst a few other things. So today, I thought that I would expand on that and offer why my disability doesn’t need to be fixed.

A lot of people presume that having a disability is this horrific event that destroys everything good. I understand where people are coming from when they think that. People can’t imagine how life could be worth living again once a pivotal body part doesn’t work again. A shift that dramatic is huge and dramatic. It literally changes everything, and you have to relearn how to live your life in a way you never expected to. That is overwhelming and terrifying. Not to mention, most people are only aware of disabled people through books and movies. These are often inaccurate portrayals of reality. The disabled person is depressed and never leaves the house and appears to have no future. That image is hard enough to take when you know it’s not true. Of course, those who don’t know much about disabled people believe it. All of this and more is why people often tell me a million “solutions” to my disability.

I’m sure that 99% of the time these ‘fixes’ are out of care and love. However, whilst all of what I have said is true it is not the only aspects of disabilities to consider. For example, all of that change means that you have the ability to learn and grow. Having a disability introduces you to a whole new way of looking at the world. It allows you to meet people who are with you in this amazing community. You get to push barriers and aim for change; you get to find a unique purpose and stand out in that knowledge. See being disabled is so much more than having pain and injured body parts. It’s more than people not understanding and ablest actions.

Being disabled, at least to me, is about empowerment. 

It’s about the freedom to be who I am. Part of that identity is a girl whose legs don’t work and because of that, I’m on a mission. That mission is to raise awareness to my community, it’s to show that we are the same as all the abled people in the world. It is to make the world more accessible. There is a future generation that could live a more accepting, accessible life if things change. I get to add to that change and know that I get to help. It is to help those who feel like there’s no hope, realise that there is so much. Hope is always around; it just may not be where you expect it. I can smash the glass ceilings and change the world. I can’t achieve all of that by myself it takes so many people working together in my community. However, the fact that I can try and add a little bit feels amazing.

Ultimately, no matter what type of disability one has there is nothing wrong with it. People with disabilities are a bright force who are living our lives the way we want. If we’re happy, we don’t need to be fixed. Life will always through curveballs. But sometimes they can be the best thing that ever happens to you, even if it looks horrible at the beginning.

If I could summarise this post into one sentence, it would be this. Disabilities don’t need to be fixed because there is nothing wrong with us or our identity! No matter what I will always be proud to be disabled!

See you next Thursday! Remember to be kind to yourself and those around you.

Bethany