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

Advertisements

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

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.

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

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 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