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.

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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.

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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

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

Disability Day of Mourning 2019

Hello Readers,

Before I discuss a topic that weighs heavily on my heart, I would like to give a warning. This entry discusses violence and murder against those with disabilities. It’s a deep and can be a traumatic topic so please feel free to not read (or read with caution). Please take care of your mental health!

Tomorrow is March the 1st. To me, it is the darkest day of the year in the disabled community. Most people will spend the day going to work, university, school and living the day like any other. However, for me and millions of disabled people, tomorrow is a day of tribute to those lost. 

Tomorrow is the Disability Day of Mourning, 2019.

It is a day of respect to those who we have lost due to filicide. Filicide is the term used for when a parent kills their child. There are vigils all around for those who we pay tribute to. This day was founded in 2012 after a man with autism was murdered by his parents in 2011. When the media reported on this, they and large proportions of the world took pity on his parents. They felt sorry and gave sympathy to the parents. Most people barely acknowledgement that an actual person, who had a heartbeat was murdered!

Unfortunately, George wasn’t a one-off. Parents of disabled people have killed their own children thousands of times. In 2018 alone, over 130 disabled people were killed by their parents. The people who were harmed ranged from a few days old to 85, and it breaks my heart. Records of these murders and so many before 2018 are kept on the official Disability Day of Mourning website. As well as, the Autistic Self Advocacy Network.

For years and years, this type of thing has been happening and slipped under the radar. The thing is, people, like to claim every single one as a “mercy killing.” They pitch it to be the best thing for both the disabled person and the parents. Somehow, most people buy into that lie, as if disabled people can’t have good lives. Except, who are these people? Where do they get the right to choose that? What makes an abled person worth trying to have a good life better than a disabled person? Why do we give murders a free-pass because they were “trying to help” because we are in some sort of misery? 

People have told me thousands of times that they would rather die than be in my position. But from someone in my position, that is insulting and not true. Being disabled isn’t a fate worse than death, it’s beautiful and complicated. It’s difficult and strange. But damn it’s worth it, living in this is so good. The truth is, Change is a part of humanity. Being disabled is a part of life, and just like anything else in life, it’s riddled with pain, love and joy. It isn’t something pitiable or destroying. It’s a whole other facet of humanity that is as good as any other way of life. 

Please don’t believe the lies that society believes. Step out and stand with us to make the world fuller of love and accessibility. And even just for a moment, tomorrow think about all those people whose lives were taken away from them. Remember how they didn’t deserve it, and that they were people. Let’s light a candle together for these people. 

If you are disabled, please listen to me. You are NOT worth less because you have an illness or injury. You are NOT weak, or pathetic. You are strong and courageous. You deserve this life as much as the next person. You exist for a reason, you are wonderful. 

So, let’s all stand together for all the souls lost. We will not forget you, and we will try to do better.

Thank you for reading, and I hope one day, this will be ended. I pray you all hope with me.

See you next week. 

Bethany

P.S if You want to know more, here are some links to blogs and other discussions on the topic.

Remembering Those We’ve Lost on the Disability Day of Mourning by Courtney Johnson

In Honor of Disability Day of Mourning (March 1) by Disability Science Review

Disability Day of Mourning 2015 by The Caffeinated Autistic

Disability Day of Mourning – March 1st, 2018   by Sibling Leadership Network.

Wheelchairs and Strangers are a Terrifying Combination

Hello, readers,

I hope your week has been full of joy and if it hasn’t, I promise it will get better, please keep fighting on.

This week’s blog comes to you because of two different things. One was something I read on Twitter this week, the second was a textthat I received many months ago.

First, let’s look at the Twitter aspect. By the time you’rereading this it will be old(ish) news, but for me, as I write this, it’s newand shocking. Although, if I’m being honest with myself, I’m well aware thatthe large majority of you wouldn’t have heard of this at all. So, allow me toexplain what is rampaging through my brain. You see, on Twitter, there is#JustAskDon’tGrab. This was spurred after countless abled people grabbingwheelchairs without permission.  Thewould walk up behind us and move us out of their way without saying anything.I’ve lost count of the number of times, I’ve read or been a part of storieslike this. Often people in wheelchairs are shopping and someone would move usas if we were trollies. There has never been any consideration about the peoplein the chairs. I would love to say something here about why abled people dothis and be understanding, but I can’t. The truth is, I don’t understand it,for the life of me I cannot work out why people do this. If someone does know,please tell me, I am so willing to listen.

Anyway, the news I read on Twitter was another one of these stories, except way worse. Not only did someone grab a girl’s wheelchair, when she began screaming for help when he wouldn’t let go. As she panicked, she asked people walking past for help but they ignored her and looked away. The article discussing this is attached for those who want to read it. The fact that this whole event happened and continues to happen sickens me to my stomach. The fact of the matter is, a wheelchair, a cane, a guide dog, and anything is that helps disabled people is necessary. They replace something that we are lacking (or legs, or sight, etc) and become that for us. My wheelchair replaces my legs when I need. It isn’t an object that is separate to me but an extension of me. It is a part of me, in the same way, my arms are. You wouldn’t (or at least shouldn’t) grab my body without my consent so why touch my wheelchair?

That question brings me to the text portion of this blog. One day, I got a text from a friend that said, “Can I ask you a question as an abled person to a disabled person?” That question in itself made me smile. The very act of her asking meant that she valued my opinion and was trying to learn and grow. Her next text said this, “If I see a disabled person and they look like they’re struggling with to get around, what do I do?” Sometimes, (not all the time) but sometimes when someone grabs my chair I’m sure they’re only trying to help me. I’m sure that the person has good intentions, however, touching my chair is the wrong move. When people do that to me I panic, even when it’s someone I know. If I’m not expecting it, I freak out. My heart rate increases and I grab my wheels to try and stop whoever is behind me. Anxiety shoots rapidly throughout my body, so I’m sweating and wanting to cry from fear. That makes me scream, all of this happening within a three-second span. It is not okay, nor is it safe. Therefore, if the goal is to help someone who looks like their struggling, there’s a much simpler, and less terrifying solution. All you have to do is ask. If I am struggling I appreciate the help, and if I’m not I’ll appreciate the offer. The next big thing to do is to accept it if I say that I don’t need your help. Usually, if I say no, it’s because I know how and what to do. However, people insist that I need help and won’t take no for an answer. The ask over and over, or they go ahead and “help” me anyway. I’m sure the insistence is because the person couldn’t imagine being able to do things if they were me but that’s because those people don’t have to. I know my body I know what I am capable of. We’re not embarrassed to ask for help or to accept it when it’s offered. We just don’t always need it. Like I said before, we are so appreciative of help offered, but when you insist it can become dangerous. Each disability is different. Your ‘help’ could cause us genuine harm both to our mental health and our physical health. People have ended up in hospital from abled people forcing their ‘help’ unto us. It’s much safer for everyone involved if you ask and listen to our answer.

So, there it is, three major things to consider when seeingdisabled people in public. Thank you to everyone out there who do the rightthing and those who are learning and will try. If you’ve done any wheelchairgrabbing or insisting, that’s okay, you didn’t know. Don’t beat yourself up,just learn from it. After all, no one is born with all knowledge. It’s okay tonot be aware as long as we listen and grow together to make the world a betterplace.

You guys are amazing!

See you soon, until then be kind to one another and toyourself.

Bethany