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I HAVE AN AMAZING ANNOUNCEMENT

Hey guys!

As the title of this post says I HAVE AN ANNOUNCEMENT! It is official, I have started a YouTube channel! I am so excited about this and cannot wait to see where this will lead me!

The channel will be similar to this blog. My goal is to educate people about disabilities. As well as, (hopefully) give a voice and hope to the disabled community. Growing up disabled is an extremely lonely thing. I knew no one else with a disability, and I couldn’t find anyone anywhere. It led me to believe the lies that everyone told me. The ones that said I couldn’t do anything. The ones that insisted I have no future. The screams that say disabled people are burdens and a waste of breath.

After a while of hearing this, you begin to believe it. I’m hoping through this channel I can show both abled and disabled that someone with a disability has a purpose and a future. We aren’t destined to never leave the house and not reach our dreams. But that we are just the same as everyone else and are capable!

It would have similar notes to this blog, but the content will be different. As much as I love blogging there is a difficulty to it. That, of course, is that it’s not visual or audible. You can’t hear my pain or see the difficulty of walking. You have to try and “see” everything through words. As much as I love words and their power, writing is not always the most optimal way to get something across.

Having said that, I am continuing with the blog and I’m hoping the two will weave together! I will be posting to my YouTube on Sundays, so please follow me on this journey. I’m really nervous and still trying to work out how to do it all. But I truly appreciate the support!

So here it is, my first video:

GROWING UP DISABLED | WELCOME TO MY CHANNEL

Thank you, everyone, if it wasn’t for your support here, I would have never done this. It’s been a dream of mine for eight years. If it wasn’t for you, I would never have had the confidence.

SO, THANK YOU, THANK YOU, THANK YOU! I can’t wait to see where this journey takes me1

As always be kind to one another and yourself!

Bethany

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Six Things That Amaze me About Abled People

Hey everyone, 

Today I thought I would share with you six things that I find mind-blowing about abled people. Seriously, as someone who has never been an abled person, I find myself saying, “wow, you can do that?” about 100 times a day.

So, in no particular order, let’s go!

1. Fine motor control

Okay, here’s the thing, my fine motor control is terrible. Like I have to get someone to tie my shoelaces on a bad day. I never cut up my own vegetables or anything like that either. Cause you know, sharp knife + tremor = cut off finger. So, whenever I see someone chopping really fast or having really neat handwriting, I AM AMAZED. Like I cannot comprehend this ability. I try and work out how they do it, and my brain goes blank. I mean literally blank. All I can end up picturing is fuzzy whiteness in my head. On the plus side, a part of my physiotherapy is to play video games to teach my brain muscle memory. Heck yes playing Mario every day till I die!

2. Spontaneity…what’s that?

There is no way someone can call me up and say, “be ready in ten, we’re going out.” I have to work out if I have the energy. If my legs even want to move. I have to find out how long we’ll be out so that I can pack enough food and meds that mean I won’t faint. I have to make sure wherever we’re going has wheelchair access. I need to make sure that my tires are pumped up enough and that I have dinner made because I know I’ll be too tired to cook by the time I’m back home. For the life of me, I cannot imagine what it’s like to just go out with ten minutes notice. It’s amazing, and something I can get jealous of sometimes.

3. Going out alone…and not having any panic

Obviously, this one isn’t to every abled person, but it is the case for a lot. Every single time I go out and I’m alone I get very anxious. If I’m out long enough that may subside depending on where I am but it’s horrible. There have been too many times where I’m alone and someone I barely know asks me “what happened?” Or tell me that, I’m an abomination or a burden. Or that, “I would kill themselves if I were in your position.” Too many times I’ve heard the stories of people stealing our bags, grabbing our mobility aids, abusing us in way possible. Too many times I have felt it all happen to me and it hurts my heart so deeply. The idea that not everyone has that burning their mind when they’re out or getting an Uber is fascinating to me!

4. You can work 38 or more hours a week…and then still hang out with friends?

I get fatigued going out for more than three hours. If I did that more than two days in a row I would need to be in bed for the rest of the week. The idea that you guys can just work 9-5 and then go out to dinner and do stuff on the weekend blows my mind! Statistically speaking I use 200% more muscle power and energy than the average abled person. Also, my body is fighting my chronic pain while I sleep so my sleep is the equivalent of half of an abled person. So, if I sleep eight hours it’s the equivalent of an abled person sleeping four. Hence why I have NO idea what it is to have energy. I am both so confused and impressed!

5. Pirouettes

I am a huge ballet fan. Like I would go to any ballet any time. In November I’m am seeing the freaking Nutcracker in the Sydney Opera House and I am so excited. I’ve literally had that as a dream since I was five so tiny, little me is ecstatic. Anyway, every time I go to one, someone does a pirouette, or a backflip and I just don’t understand how you balance. The other day I was watching Disney on Ice and during their version of Frozen, one of the backup skaters did a quadruple spin and her legs looked knotted together briefly, but she could still balance. WHAT? HOW? Please, someone, explain

6. How far you can actually walk.

I totally get that you can walk and all that. What I don’t understand is how you lot just go for a casual five-kilometre run. That just seems so overwhelming to me. How are your legs just not collapsed on the floor, like noodles? How are you even alive? How come you can go on with your day? How do human bodies even work?  

Well, there you have it. Six things that amaze me about abled people. There’s so many more that I’m missing, though, feel free to let me know of other ones! 

As always, be kind to yourself and others!

Bethany.

A Rant on Why the Disabled Community Still Need Activism

Hello everybody!

 I’m going to be honest with you guys. As I type this, I am really freaking annoyed and angry. I have been in bed for the last two and a half days. I was supposed to get up today and exercise but instead, I kept sleeping because I could barely move. For the last week and a half, I have been trying to write a very simple column for a girl I know and yet I can’t focus for more than five minutes on it. I don’t even remember the last time I was able to read more than a page without falling asleep. I have no idea how I’m focusing enough to write this. I think my entire energy is just fuelled off anger and a dash of glitter. Either way, here I am writing it.

To be honest, I think this side of having a disability is rarely talked about. People mostly like to speak on what we have achieved or how “inspirational” we are. Never our pitfalls It’s a tough one because a lot of people think that we as a community can’t do anything. When they learn we can do pretty much anything it’s like we can never have a bad day (or week). I’ve lost count of the number of times people close to me have accused me of faking my bad days. Like all of a sudden, my symptoms no longer occur just because I can hold a conversation and work hard.

All of that, of course, is why activism is still so needed. I get that there are 100s of causes to fight for nowadays. I know that many believe that we don’t need that many let alone another one. Heck, I have many people in my life who think that all this activism has already worked. They truly believe that we are all equal and these “extra” movements are unnecessary and pathetic. But the thing is, if I was working an average 9-5 job, I would have run out of sick days a long time ago; and probably have lost the job. I know that most people wouldn’t believe me when I have days off. The truth is, very few believe me now. Even more than that, this fictional 9-5 job is just that, fictional. Most disabled people have to create their own jobs because people won’t hire us. People see the wheelchair, the hearing aid, the guide dog and we’re automatically put in the “incapable” pile.

People need to start listening to us, they need to see us. The truth is, this community is amazing. We’re resourceful, passionate, intelligent, optimistic and sure-as-hell capable. But very few know this, very few see us, and that isn’t okay.

We are human, we are valuable, and we deserve to not be ignored, or treated as a second-class citizens. We deserve to be listened to and not be accused of “faking” or “exaggerating” all because someone doesn’t understand.

I realise that this post has been an entire rant and I apologise. I promise next week will be more fun!

Please look after yourself,

Bethany.

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.

#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.

Screen Shot 2019-05-01 at 8.16.27 am

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:

Screen Shot 2019-05-01 at 8.15.49 am

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

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