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.

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.

UNINTENDED CONSEQUENCES OF BEING DISABLED

The fundamental difference between the mind-set of disabled people and that of our families, is that my choices, views and understanding, come from a place of action, whereas the feelings and thought processes of my family, stem from a place of reaction.

My disability, is often much harder on my family, than it is on me. Despite the fact that I am the one directly affected by my disability, unlike my family, I have learnt coping mechanisms to help me face my challenges. I have accepted my life as a disabled person and I am the only one that can actually do something to make my life better. My family on the other hand, watches me struggle, where I see small victories, they feel helpless and unable to make my life easier… Perhaps families get so caught up in their desire to do something profound, that they don’t stop to take in the things they have already done, or consider what they can do.

I’m sure that it was a shock for my family when they found  that I had a life-altering disability and their first instinct was probably to coddle and protect me at all cost. Fortunately for me and in spite of criticism from doctors, social workers and perhaps even friends, they decided to raise me as if I could see. They understood that I would one day have to live in a world that won’t naturally accommodate me and they therefore allowed me to learn to navigate a world, not designed for people like myself. I learnt to use my remaining senses, I learnt to walk and run and find my way around, unassisted. I became resourceful and because my family let me discover that I could fall and get up, get lost and figure out how to find my way back and that I am capable of anything, I grew up to be well-adjusted and capable of being a productive member of society. My family showed me that there’s always a way, if you just keep trying and that it’s okay to ask for help when it’s needed.

Dealing with disability in a family, can either bring them closer to one another, or destroy them… in this, these families are no different from any other family, going through rough times. The real snag in families of disabled people, is that we get used to each other. Eventually, our families stop acknowledging or considering our disabilities and in the perfect world, where society acts accordingly, this of course would have been the ideal point to have reached… Instead, families forget that living with a disability is still incredibly difficult and can be exhausting at the best of times. Although I am independent and capable and strong enough to weather the storms, I am not invincible.

Disabled people still struggle to find meaningful employment, society’s attitude towards people like myself, is less than desirable and it presents challenges that my family aren’t even aware of. I am still discriminated against and I still get frustrated by my own limitations. I might walk around like my disability can’t touch me, but that’s the only way I know to survive.

People with disabilities are not blameless when it comes to reasons for the divide between us and those closest to us. We stop telling those around us of the things we have to endure. We forget that our families present a safe place and that it’s okay to let our masques slip, when we are with them. We sometimes treat them like they are the enemy, we stop giving them chances to prove us wrong, but most of all, we forget that they’ve been in this with us, from the start and that we should let them in. Our families are strong enough to know and experience the full extent of the ways in which our disabilities change our lives. We have to remember that we have to tell them what we need, and not simply expect them to know.

If you are the parent, sibling, family member or friend of a disabled person, don’t become immune to our situations. Remember that even with all the technology, survival strategies, support and experience, being disabled will never be a walk in the park. When you think that we haven’t been trying, because you haven’t seen the proof of our efforts, give us the benefit of the doubt… we have always done the best we can and when we give up, it might be that we just need a minute to regroup. Don’t stop believing in us, even if you can’t understand our choices, but support us and have faith that we know what’s best for us. Remember that we will grow up, don’t treat us like children for the rest of our lives. We know that it’s not always fun or effortless to be around us, but don’t forget that occasionally, instead of a plan of action, advice or opinions, all we need is sympathy, someone to listen without judgement and to have somewhere quiet to go when we need a break from the constant uphill battles that more often than we care to admit, consume our lives.

There is no guide for having a disabled person in a family or community. We will make mistakes, be careless with each other’s feelings and we’ll have to learn to forgive each other all over again, but it’s up to us, to find that middle ground, to fail and keep trying, because we owe it to each other to not let this thing we didn’t want and wouldn’t have chosen for ourselves, keep us from having meaningful relationships, free of resentment, with those we are fortunate enough to call family or friends.

ACTIONS DO NOT NECESSARILY SPEAK LOUDER THAN WORDS

Roughly 10% of the world’s population consist of disabled people. People who are unable to see, hear, walk, talk and the list goes on… We are rare, most peoples’ paths will probably never cross that of a person with a disability and most people will never even spare a thought for our lives, because 10% of billions of people all over the globe, is the very definition of a minority group.

This group of people, consists of  really good people and really bad people and people who like everyone else, are essentially good, but who have done bad things, made mistakes or simply existed without ever really doing anything, but none of it really matters because we are hardly ever regarded as real people. Those who truly know us, understand that there’s more to us than what we lack or at least that it is the least significant thing about us and in their eyes, we have the potential to be anything. While we appreciate that there are people in our lives who are able to look beyond our disabilities, the truth is, that often it is simply not enough.

You may think that your life cannot possibly have an impact on the life of a disabled person… You don’t even know a disabled person… But you are wrong. If there is something I have come to understand, it’s that it’s all relevant.

I understand that it is impossible to care about everything and everyone and that no one can bring about a state of universal happiness, but what I can’t except, is that it is not possible to live a life of kindness and acceptance or at the very least, tolerance.

For the longest time, I believed that the fact that I am blind, was wrong, it was bad and that I had to apologise for being blind or for needing things that will enable me to live a life of possibilities. No one told me that my blindness was bad, to my face. Instead as a child, I was bullied by children who could not understand my disability, as a teenager, I was ignored by other teens, because disability is not cool. As a student, more of the same things happened, because students are simply the older versions of the children and teenagers I used to know and as an adult, my abilities are doubted, I am still subjected to ridicule, bullying and I have to contend with ignorance and indifference.
I get asked to leave public places, because my guide dog isn’t allowed inside, no one ever believes that I could possibly have completed a degree and found a job. More than once I have met people who insisted on talking loudly or slowly when addressing me, since blindness must obviously mean that I can also not hear or understand them. I don’t always get to make my own choices and have others accept those choices, for it is not easy to convince doctors, shop assistants, teachers and so forth, that I might actually know what’s best for me and as a disabled person, I don’t always have the luxury of many things to choose from in the first place. Often it is merely a choice between the most accessible things and my decisions have very little to do with what I actually want.

To add to my belief that my disability is the problem, we live in a world of social media. You do not have to look too hard to find stories about how disabled people everywhere are mistreated and once you start reading the comments, between those who feel sorry that such truly horrible things happen to people who did not ask for their circumstances, you always find those who remind us that it is our own fault that we are treated badly, because how dare we ask that our service animals be allowed in public places, how dare we ask for wheelchair accessible ramps or blind-friendly traffic lights and how dare we ask to be taken seriously.

Being disabled is not a walk in the park, even though my abilities, competence and worth is always questioned, I must remain positive… I have to keep on trying, be an inspiration, pretend like nothing can hurt me or break me and sometimes, I am not successful. Sometimes, I lash out with my own comments or opinions and I become part of the problem. Instead of turning the other cheek and setting the example of a life of forgiveness, I lose it, because sometimes it is all just too much and the burden of having to be twice as good as everyone else, working twice as hard, pretending that I’m okay with things I despise and knowing that my actions reflect on all disabled people, is too great.

I have figured out that a disability, is not the monster in the room, but that it makes others uncomfortable and that apart from living my story as best I can, there is very little I can do to change it.

However, our lives matter, not just our disabilities. It is okay not to like us, but it’s not okay to dislike us because of our disabilities and it is most certainly not okay to make us feel like it is our fault that society does not know what to do with us.

Now, because everything is relevant, even if you have never even met a disabled person, your actions matter. Not kicking me out of your establishment with my guide dog, will set an example for others, teach your children that diversity should be celebrated, not tormented and made fun of. Imagine yourself in my shoes before you act and always choose to be kind. Like me, you might not always get it right, but keep on trying anyway, you never know how your choices may have touched a life. You might even get to change a few.