TIME TO RANT

Yesterday I was watching a graduation video of a disabled person and boy did the crowd go wild. Then I remembered my own and other disabled people’s graduations and it’s always the same thing! Standing ovations, cheering audiences, everyone is just overjoyed celebrating your accomplishments. An entire community sharing in the joy of a person who has a disability and I can’t help but wonder where that community was when I was tripping and stumbling my way to class… Where were they when I was refused entry into buildings and kicked out of campus residence because guide dogs weren’t allowed. Where were they when I was begging and bargaining for textbooks in accessible formats to be delivered to me at least before I had to write exams. When I was knocking on doors trying to raise enough money to cover my studies and the equipment I needed to make my life a bit easier and got rejected at every turn, there was no one putting a hand up for me then… Yet there they are drawing inspiration from my situation, saying things like “we are proud” and “it could not have been easy”.

Instead of giving me a round of applause, they should take a moment to hang their heads in shame because despite our Constitution and awareness campaigns, disabled people still receive very little support from our communities. I did not succeed because I had the same opportunities and resources as the non-disabled students, but because I became a problem solver, an activist, and I refused to listen to everyone who told me that my dreams were unattainable. I attended classes where half the things taught only appeared on projectors and I was covered in blood because I walked into things on my way there. I often wrote tests with nothing more than  general knowledge and whatever information I remembered from class because I didn’t get my study material in time. I got up at 4:30 in the morning so I could get to campus before the roads got too busy to cross and walking between 7-10 kilometers a day was just  one of those things. I was not given special treatment, often I wasn’t even given equal treatment. I experienced discrimination, a lack of accessibility, I was exposed to dangerous situations and I had no one to turn to. All those people with the tears in their eyes and their hands in the air for a disabled person who achieved something great, were nowhere to be found when I was fighting for the things they take for granted.

I see headlines such as “/Blind graduate beats the odds” and I feel sick because that graduate did not beat the odds… What disabled people do is far more impressive than beat odds that are unfairly stacked in favor of non-disabled people who cannot be bothered with things like accessibility and implementation of non-discrimination policies by those non-disabled people, in the first place. Disabled people overcome challenges presented by their disabilities and environments, we disprove myths and fight against stereotypes and preconceived notions of what we are capable of. We succeed with minimal resources available to us and we never give up. A disabled person with a goal, is a bit like a dog with a bone. We are determined and driven… and we are not afraid of failure. We are exposed to the worst of people on a daily basis and even though you would expect us to be some of the most cynical people to roam the earth given our circumstances, you could not be further from the truth.

We are who we are, not because we have amazing and supportive communities and people in our corners, but because we are good at standing up for ourselves and getting what we need. Those headlines should rather read something like “Blind graduate succeeds despite the total disregard for his/her right to equality by the non-disabled community”.

Disabled people are used to inspire others, our situations are exploited for money, medical advancements and sympathy. We are abused, abandoned and deemed worthless before we even had a chance to prove ourselves. We are told that we have to learn to be independent when what they really mean is that we have to learn  how to be alone and if all those people who write articles about us and who dance on their chares when we succeed really want their words and their actions to mean something, it’s time they really get to know us… it’s time they walked the distance with us… it’s time they learnt what being disabled really entails! The good, the horrific and everything in between, because disabled people are more than “feel good” stories or charity projects and we deserve the same chances, opportunities and freedom of choice as everyone else. We don’t need validation and news articles to remind us that we can be great, we already know. What we need is for those around us to be reminded to remove the obstacles that make it unnecessarily difficult for us to survive and where we are not constantly at war with society and barriers designed to exclude us from experiencing normal lives.

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THE NEVER EVER LIST

Just because it didn’t work, does not mean you failed the capable disabled person test!
When it comes to my capabilities, I sort things into 3 categories in my mind:
1 The “I can do this with my eyes closed” list;
2 The “this is less fun and time consuming but still doable” list; and
3 The “this was a bad-bad idea that should be abandoned and never spoken of” catastrophe list.
Now contrary to popular belief, my catastrophe list is a whole lot shorter than the list of things I can do easily and those I can do if I have to. I have longs since stopped believing that these things I either cannot do or have decided not to do, are not reflections on me as a disabled person and it doesn’t make me less competent. Let’s face it, there are musicians who are completely tone-deaf, who grace us with their presence on international stages and the world seems to think they are amazing, so really my inability to do seemingly insignificant things like decorating a birthday cake or any of the things mentioned below, should not let you lose confidence in me as an independent person capable of captaining my own ship and all that.
– Applying eyeliner! I am not saying that it is not possible for a blind person to do this, but if my corneas weren’t going to rupture on their own anyway, I would have put good money on the theory that I would do it with the amount of times I poked myself in the eye with the pencil. Not to mention the fact that I could just never make it look right.
– Cooking for sighted people; I think my food tastes just fine, but at the risk of being told that I lack presentation, I just can’t see this ever happening.
– Take my dog to a park alone; Generally, I don’t mind getting lost, but the idea of being lost in a big open area with no landmarks I could even hope to use to find my way to the entrance does not fill me with enthusiasm to try it.
Eating Chinees food with chopsticks; I tried this once with sushi and I basically just managed to separate my food into 1000 particles and made my sister laugh so hard she nearly drank her wine twice… once through her mouth and then through her nose!
Dancing in public; As a child, I competed in acrobatics, but that was choreographed and planned out to the last pointed toe! What I’m talking about is going to a club or a party and getting your “groove on” or whatever the kids call it these days. I can hold my own when it comes to the rhythm, it is the hip shaking and arm movements and keeping it all in sync I have trouble with. I just end up feeling like a freak with too many arms and legs and I’m quite sure that I subconsciously stick my tongue out when I’m really concentrating on something … so you get the picture.
Shopping for clothes on my own; I don’t have severe trust issues or anything, but I can never go shopping with someone who doesn’t know me and who I can’t trust to tell me the absolute truth… Even if that truth is that my butt looks fat in those jeans! Let’s call it control issues then. Sure, I can touch the clothes and have an opinion on the material, but I also need to know that it looks alright and that I will be able to easily pair it with other clothes. I mean of course that super helpful sales lady is going to tell you that it looks great.
Attempting to walk without a cane or my guide dog ever again; So, in my first year at university, I decided to leave my cane at home because I didn’t feel like being laughed at and bullied. I wanted to blend in and make friends… be normal for once. Well, I did blend in… with the plants and trees and tar roads I walked and fell into. I decided then that normal for me is making use of assistive devises and later my guide dog. I think it is far more obvious that I just fell and nearly broke my nose than quickly and calmly navigating my surroundings with a cane or guide dog and who gives a shit what others think anyway. If you want to make fun of me because I am making the best of my circumstances, you are the one with a problem not me.
Admittedly some of the things listed here, have more to do with my confidence and less to do with my blindness, but the point I am trying to make is that it is okay to abandon things that aren’t working for you. Life is meant to be lived, and if you are going to stress over every single thing society dictates you should do, you won’t ever get to the fun stuff. It’s okay to ask for assistance, it’s okay to suck at doing something and even if every other person with a similar disability told you that they can do what you can’t, it’s okay to say: “screw it”. We might share a disability, but we are not the same people and if you can help it, you should not do things that make you feel uncomfortable, unsafe or anxious. If you keep doing the same thing with no success, you won’t ever find alternatives in order to get it right and quite frankly there is no rule that says that everyone must be able to do everything. Just because you are disabled, does not mean that you have to prove your worth by being superhuman.

SO WHAT WILL YOU DO WITH YOUR ONE CHANCE AT LIFE?

While A Farewell To Arms, doesn’t exactly leave a person feeling perfectly chirpy, there is treasure within… Which in itself is telling. So you can say about Hemingway whatever you will, but he gave me something I always think of when the weight on my shoulders gets particularly heavy. “The world breaks everyone and afterward many are strong at the broken places”.

Disability isn’t exactly a tragedy that discriminates. It can happen to anyone. In the blink of an eye life as you know it could be over and everything you once considered important can seem trivial in the aftermath of whatever it is that ripped your world to shreds. Some might call your tragedy the defining moment and in a way, tragedy always is. There is life before and life after, but I don’t really think it is the cataclysmic event so much as our choices thereafter that should be regarded as the moments that set the course for our lives.

In the last few weeks, I’ve been hearing many disabled people talk about how being disabled requires a lot of practice and skill… To a certain extent, it is the truth. I mean if you aren’t disabled, experimenting with disability is probably not wise. Not because you won’t be able to find the bathroom in the dark, but because you are not considering all the variables and your findings will at best be inaccurate. Seemingly funny stunts aside however, perhaps you are one of the unlucky few who unwillingly joined the disabled community and maybe you too have been reading all about the expertise you will need to navigate your new world and maybe you are wondering where to find the courage to pull yourself out of your misery… Which brings me back to Hemingway.

You can do nothing about your circumstances, but you don’t have to allow it to destroy everything. It’s easier said than done, I know, but you will learn, you will adapt, you will wake up one morning and realize that while your mind was busy conjuring new “what ifs” to torture you with, your heart learnt to accept the cracks and despite your mind, your brain had started to compensate for your new life and your body had been obeying its commands. You have been getting out of bed every morning, you have learnt that bumping your toe against the same chair twice a week is simply part of your routine and the coffee table will have a dent in it before your shins are damaged beyond repair. You can’t remember where you got most of your bruises and you don’t even think twice about sticking your fingers in your plate if you’re not sure what’s on it. In short, you have survived.

You didn’t have to. You could have chosen to curl up and wait for your life to be over. You could have become bitter and resentful… You could have allowed your broken parts to trap you in a world without hope or joy or the knowledge that you can grow and become more… not less. You didn’t though and it made all the difference.

The reality when it comes to disability, is that it won’t ever stop affecting your life. It won’t stop happening to you and neither will other bad things stop happening to you merely because you are disabled. You are possibly wondering where the silver lining is and it is simply this; If you could survive your world being torn apart once and let your broken places become stronger once, what’s to stop you doing it again and again. I’m not trying to tell you that tripping over objects or walking into things will ever be fun, but you will learn when to be more cautious and when to just call a bad day a “bad day” and move on. You will get better at working around your disability and the day will come when you no longer think of it as the enemy.

Disabilities require courage and determination, it is not an easy thing to be. You will have really good days and really bad days. You will get tired of having to prove yourself. You will get frustrated by your own limitations and you will probably need to take a few ice-cream days along the way. You do not need a degree in survival. I’ll let you in on a secret, I’ve been disabled all my life and there are still things I’m not great at doing, I just don’t dwell on it. Disability is not a choice, what you do with it when it happens on the other hand, is entirely up to you.

IT IS A SIMPLE MATTER OF ACCEPTANCE

A while back, I read an open letter to the family of disabled people. It was probably meant to be touching… It thanked the non-disabled family members for being okay with a life where everything is about the disabled person. If you look at it from a parent’s perspective, I get it, there are disabilities and illnesses that demand a lot of time… Time that can therefore not be spent with other members of the family, but apologizing for it, thanking everyone for being okay with it, it made me feel uncomfortable.

Firstly, not all disabilities have to fall in the category of time consuming disabilities, so if instead of teaching your disabled child to do as much for him/herself as possible, you tried protecting him/her at all cost, you alone are responsible for the consequences of that choice. Secondly, regardless of whether your child’s disability requires full time care or not, it is no one’s fault. The other members of that family did no more ask to be apart of a family with a disabled person than the disabled person asked to be that way. No one should feel like they need to be thanked for their saintly sacrifices and no one should be made to feel like they need to apologize for being different. It is simply a terrible thing that happened and just like the disabled person must deal with his/her disability, so must the family members of that person deal with having a disabled person in the family. Disabilities after all, don’t just happen to the disabled person, but it affects everyone. If you think that it’s unfair that you have to help your disabled sibling, perhaps you should also remember that it’s equally unfair that your sibling needs that help in the first place. “Life sucks for everyone… get over it.”

The problem is, that instead of teaching others that disabilities are not issues that cannot be dealt with, we teach disabled people that as the disabled, they alone are responsible for dealing with the effects of their disabilities… “What happened to it takes a village and all that?”

So I often find myself apologizing to non-disabled people for having to ask for accommodations that would inconvenience them. Would you as a non-disabled person feel like you need to apologize for having to ask for a chair to sit on while working or for a light to be switched on in a dark room? For the sake of the argument you might say yes, but the truth is that non-disabled people take it for granted that everything will be provided. You don’t know what it’s like living in a world where everything has to be adapted for your needs. It’s not just that I have to ask for accommodations… Non-disabled people complain about allowing my guide dog to accompany me to public places, when I ask for extra time to complete tests, I’m told to stop acting like a “naughty child”. I am told not to begrudge sighted people their sight, but no one tells the sighted people not to despise the fact that they have to design a world where I too have the same opportunities and privileges and at the very least a world where I have access to the very basics such as education, employment and public facilities. “Hello pot, meet kettle.”

I understand that you get frustrated by my limitations, I ask for more than you perhaps would like to give…  but don’t you think that I get equally frustrated with being part of a society where nothing was designed with disabled people in mind and yet I am expected to rise above. I would very much like for things to be different, I would like to not need anything from others. What can I do? It is what it is and we simply have to get on with it. Making me feel like I am a burden and constantly reminding me that I am indebted to you, won’t change anything. “What’s that saying about learning to dance in the rain again?”

Maybe it’s time we teach our children, our friends and those around us, that disability is not something that should merely be tolerated, teach them not to expect praise for considering the needs of disabled people and teach them that disabled people are real people, with real feelings and above all else, just human. After all, no one thanks disabled people for making the best of the cards they were dealt and I don’t hear them complaining… I imagine that being disabled in this harsh world where it’s every man for himself, must be so much more awful than being able to do everything for yourself and occasionally having to lend a hand or give some of your time or simply have some empathy, understanding and make an allowance for someone that is not as fortunate as you are. “You just never know when the shoe might be on the other foot right?”

YOU CAN NEVER EVEN IMAGINE

Someone close to me, once in the middle of an argument, told me that had our positions been reversed, that person would have been a lot better at being disabled… For a long time, those words haunted me. I didn’t think them true, because I was old enough to understand that peoples’ lives and circumstances and experiences, simply can’t be compared, but I wondered if that’s how most people thought of disabled people… Do they really believe that our struggles and the things that bring us to our knees, are exaggerated, embellished by us in order to evoke more intense feelings of sympathy, so we can get a few more handouts.

Not being someone who bares grudges, I moved on, until a while back when I was reading a book about assisted suicide.

The book was told from the perspective of the family and how difficult it was to come to terms with the decision of someone they loved, who didn’t want to live anymore.

What really got me, was how everything was about the feelings of nondisabled people, as if nothing else mattered…

In reality, this is probably true for most disabled people.

If I don’t want to go to clubs, because I find it too noisy, I am being boring and I only get 4 stars on the friendship rank. If all I want to do is go home, instead of to some stranger’s house, where I won’t even know where to find a bathroom, I must learn to compromise. When I leave a social gathering early, because I have to go and take care of my guide dog, I am reminded that it’s just a dog. I am judged because I didn’t find myself a driver’s license/husband who could take care of me and it is predicted that I will probably be a burden on my family for the rest of time. When I complain about the dreadful state of accommodation for disabled people, I must remember to feel grateful for what I do have… I’m not allowed to have a 20 minute pity party for one, as “my life is not that bad and I have so much to live for”.

After reading that book, I remembered that conversation and instead of wondering about how disabled people are perceived, I started wondering if this line of thought isn’t perhaps because those who have never been disabled, simply get frustrated by our limitations, if perhaps some days, they are annoyed by my inability to be this person they want me to be. Isn’t it perhaps that if they live with me for long enough, they forget that I am disabled, maybe I have become almost normal to them and then in one swift movement, one decision, I rip the carpet out from under their feet and with a jolting crash, I remind them that despite my ability to blend in or play my part of so-called normalcy well, I am still just a little bit different in a way that can’t be fixed or looked over.

The truth is, that there are people who seem to effortlessly fit into a community where they are the only disabled people. Large groups, outings where they can’t fully participate or places where they are not accommodated don’t bother them and they find it easy to live among people who aren’t disabled… But that is simply not who I am. Acting like I belong, not looking weird or going about my life, not feeling like a freak when I walk with a hand in front of my face, or feel around for objects, takes so much of my energy. Joining in conversations where I have to figure out body language or facial expressions is exhausting and constantly pretending that I am having a great time when I’m obviously not, is a skill I haven’t yet mastered.

Now I am not suggesting that I would like to seclude myself in a bubble, merely that compromise is a 2-way street. If for example, you didn’t like heights, I wouldn’t suggest a night out on the top of the highest building I could find.

Is it really that hopeless to  wish that people with disabilities  might live in a community of friends and family where differences are not smoothed over by pretenses. Where instead of being bumped off the friend list for only doing things we don’t like every once in a while, to have the kind of friends who occasionally suggest things that we won’t just have to tolerate. Is it too much to ask for people to respect our choices and at least try to understand where we are coming from? I know that no one can really take a walk in anyone else’s shoes, but it is possible to have empathy, to accept those in our lives exactly the way they are and to remember that no matter how well you know us, you cannot possibly know what it’s like to be disabled… You can never even really imagine.

Wait!

What a brilliant post, describes my thoughts and feelings perfectly.

Where's Your Dog?

“What’s it like, being disabled? As in, day to day?”

For a long time, this question stymied me. I had no frame of reference, no way to start with “normal” and paint a picture of what “abnormal” might look like. I could describe specific obstacles, particular incidents, but I had no sweeping, instantly relatable analogy–no lens to capture what this life is like when it’s the only reality I’ve ever known.

Many have taken a crack at this tough little nut, and come up with innovative ideas along the way. Being disabled, some say, is like playing a video game on the highest difficulty setting. Others say it’s like navigating an obstacle course while everyone else uses a sidewalk. Some of us resort to hiking metaphors. Your path is wide and smooth; mine is a rocky, treacherous trailblaze of a life, which manages to be as hard as people…

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