An Open Letter to #Nike From a Disabled Consumer

Dear Nike,

Yesterday I ordered a pair of your Flyease shoes. Four years ago, when you launched these shoes you marketed them as “the shoe for people with disabilities.” I was ecstatic. Finally, a shoe that I can wear. One that I can slip into and do up without spasms or assistance. I don’t have to worry about my laces coming undone without being able to do them up. Plus, they don’t look like they were designed for 90-year-olds! What made them even better was that they were designed with someone who has Cerebral Palsy. For once, our opinions were valued and taken seriously. Four years ago, I was ecstatic not just for the shoe but also for the win in the disabled community.  When they were first released, the shoes had their problems. They only existed as a male shoe from size seven and they were only available in America. For me, I didn’t mind that as much. I knew it would take a while to get everything sorted…so I waited.

Cut to now, years later, these shoes are in my size, country and they don’t cost the earth, amazing! With excitement seeping through my fingers I went on the website to look at my options. But doing that made my heart drop into my stomach. Every different version of this shoe had models showing how to use them. None of these people was disabled. The whole point of these shoes is to supposedly help those who struggle to use their feet and have fine motor control issues. Yet, not a single model seemed to have any of these issues. The videos and photos show no mobility aids, no tremors, no difficulty jumping or standing, or running on the spot like they did. So, these shoes “for people with disabilities” aren’t really for us, are they? If they are, why must we be hidden behind the able-bodied people? I know people think that the abled models are because you want to market this shoe to the able-bodied too. However, there’s a huge flaw in that. Having disabled models don’t take away from that. Isn’t part of modelling meant to be representation? Or at least an attempt at that? We all know that there are many problems with the model industry and representation. However, this shoe had the disabled community in mind from the start. Doesn’t that mean that some of us should be involved in the marketing of this? I’m not saying that all the models should be disabled, but some should be, in fact, some need to be!

The truth is, disabled people are everywhere. We are in every country and culture, we matter. Not to mention that a lot of us have had to do some form of vigorous exercise every day since we became disabled. We get fitness. By replacing us with abled people to sell something designed for the disabled is heartbreaking. It’s telling us to hide, to be ashamed, that we are not as good as the able-bodied.

On top of all that, these shoes are available for children. As someone who grew up with a disability, I felt alone. I looked around and saw no one like me. Not on television, not in magazines, or books, and definitely not in models. I felt as if I was the only one. So, I thought I was weird and wrong, broken and ugly. That is because we have to live quietly, in the shadows. Please, don’t keep us hidden. Please don’t add to the culture that excludes us. Respect us, appreciate us, celebrate us. Be the arrow of change and show the world that there’s nothing wrong with being disabled. Work with us to show everyone what we are capable of. Let’s give future generations something that shows them they aren’t alone. That they matter, they have a future and they are the future.

Thank you for creating the shoe, it’s an amazing achievement. Thank you for that movement in the disabled community. But I beg of you, please, continue it. Please work for even more advancements in this world for the disabled. Be one of a kind. Start a fire with us that shakes the foundations of the world’s beliefs. Please believe in people with disabilities.

I hope to see a change soon.

Thank you.

From a disabled consumer, who looks hopefully into the future. Bethany

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4 Things I Love About Being a Wheelchair User

Hey everybody,

There are a million great things about being a wheelchair user, so I thought I would share my top four with y’all!

4) Being in a wheelchair in a busy place can be a great asset.

I cannot tell you the amount of times I’ve been rushing around and the crowds have dispersed in front of me. It’s like departing the red sea. Admittedly, it’s rare but, when I’m going the opposite way to the crowd it’s fantastic, almost like a super power.

3) Footplates are a Godsend.

Obviously, they are useful for their actual purpose. You know, the whole holding my feet in place thing. However, they are also useful for moving things out of the way. Let’s be honest, 99% of public spaces are littered with chairs, doors, and everything in between. Sometimes it seems like every inch if my path is blocked. I don’t know about you, but I get so grossed out having to touch things that look dirty, especially during flu season. So, instead, I push everything with my footplates, never needing to touch a thing. It’s not a perfect system and sometimes it doesn’t always work but it can be an amazing tool.

2) Other wheelchair users

One of the best times I remember is seeing a little girl’s reaction to me when I was at a shopping centre. She was about ten years old and sat in a wheelchair. Her eyes widened in excitement, with a humongous smile. She could barely catch her breath. I smiled and said hi. It turns out that this girl had never seen anyone who was in a wheelchair before. I remember being in her position, I know what that’s like. Seeing someone that seems the same as you, it gives you hope. It shows you that there is a future, and it can be bright. It’s a wonderful feeling. Even now, when I’m having a bad day with ableism I see the others around me and remember I’m not alone. That we are all in this together and we can change things. That once felt hope returns. After all, hope is the thing with feathers.

1) Wheelchairs and mobility aids are freedom!

Throughout my younger years I ran – well metaphorically ran- away from using my chair. For years and years, I believed the lies I was told about wheelchairs, about me. The ones that tell me to be ashamed, to hide. To walk instead of using my chair because it’s better and easier for those around me. I thought my wheelchair made me even more of a burden than I already was. But now I know I’m not a burden and neither is my chair. There is nothing wrong with having a disability. Being in my chair gives the ability to get around without leaning on others. It gives me independence and reduces my pain. It’s a part of me and gives me confidence in both myself and my body. So, I’ll say it again, wheelchairs are freedom!

Truth be told, I love my body and my disability. I even adore and love my chair. It’s amazing and I’m so thankful for it.

Thank you for reading. Got any other good things about being a wheelchair user? Please leave a comment below!

Until next week, be kind to one another, especially yourself!

See you then,

Bethany

How I Have “Overcome” my Disability

Hello everyone!

Not a week goes by where I don’t see an inspirational post about disabilities. More often than not, it goes like this: Look at that disabled person. They have achieved this super amazing goal and are “overcoming their disability.” For example, today I have seen this same America’s Got Talent audition a million times. Everyone has been amazed at this 22-year-old’s ability to sing and play the piano. But more so, they were shocked by the fact that this musical ability was coming from a blind, autistic man.

I get why people do this; most can’t imagine how we can be motivated to do anything whilst having such physical struggles. Because of that, when we do anything that is considered an achievement, everyone is amazed. But there are two big issues here. The first is very simple. The fact that many people become surprised that we have talent, besides getting up today. Ultimately, whether you can sing, write or draw, that talent is fantastic. However, none of that talent is because someone is disabled. It’s no more surprising that a disabled person has a talent than any other abled person. This is because we are as normal as everyone else! We have our own dreams and plans. What is often mistaken by a lot of people is that those plans are thought to be second to our disability. Like “fixing” me is more important, or a bigger goal. I think that may be one of the reasons why many are shocked by our achievements. Hence the whole “overcoming our disability” thing.

That is the second issue with the praise and amazement of disabled people doing almost anything. I don’t overcome my disability. It is a part of me and always will be. I’m not getting better, and that’s okay. But everything I achieve is not in spite of my disability but because of it! (Well that, as well as you guys, a bit of luck, and a lot of hard work). Overcoming a disability is an impossible goal that tells disabled people we are not good enough until we do that. In fact, it reinforces the constant narrative that we are second class citizens to all ableds. It also perpetuates the idea that we are only here to inspire all the abled people. That, of course, is not our job. We are here for much more than that.

We are here for ourselves. We are here for our goals and dreams. Just like anyone else. For me, personally, I am here for God, and to help others, and to love. I am here to live a regular life, including my disability. I dream of a world where seeing disabled people aren’t the abnormal but the usual. I dream of a world where no one is surprised when we achieve things because we’re disabled. I dream of a world where we get to exist without being “inspiring” just because of my disability.

My favourite Ted Talk ever is one called “I’m not your inspiration, thank you very much” by Stella Young. She talks about this topic in an amazing and much better way. If you’re interested, please watch it!

Please, let’s work on a world together. One where we aren’t different, or wrong. Let’s change to make us included and loved just like any abled person. Let’s change so that we are no longer treated as less than, with no expectations.

Thank you for reading.

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.

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