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.

MY SIGHTED GUIDE FOR BLIND INTERACTIONS

In the greater scheme of things, I am a “roll with the punches” kind of person and you really have to go the extra mile to seriously rain on my parade… I am used to life not going as planned… Let’s face it, who really factored blindness into the equation when plotting the course of their lives? So when it comes to ignorance, stereotyping, insensitive comments and being treated like I have a contagious disease, I am able to shrug it off without too much of a fuss. People are who they are and it will take more than one blind girl asking for change to actually get them to see the light.

However, in both the sighted and blind communities, there are things that drive me insane and make me wonder whether I have ever really been comfortable with the “smile and wave” approach, or do I just convince myself that It’s who I am when I am too lazy to speak my mind.

A lack of accommodation, is at the top of each list concerning my grievances against the sighted community together with the fact that the designers of this inaccessible society, never learn from their own or each other’s failures, nor do they care. The simple truth is that they don’t think of the needs of disabled people because to them, we are mere inconveniences. They can’t recognise that we have thoughts or feelings or opinions worth their attention and so we keep swimming against the tide, hoping that eventually things will go our way.

It’s a battle, collectively fought by disabled people and at least the discrimination doesn’t feel personal and I’m stronger, because we are united in our desire for equality.

If only we knew what emerging from the shadows would cost us. Before we started to publicly address the recognition of our rights, we were almost invisible, pitied and ignored… Now I often wish that someone wrote a guide for dealing with disabled people, before embarking on this journey of enlightenment. So in an effort to bridge the divide and avoid a full on rant, let’s just start with the basics:

“how many fingers am I holding up?” I am blind, not concussed and the very definition of blind, is that I cannot even see your fingers!

“Do you know whose talking to you?” Should I? are you that significant that I should have memorised the sound of your voice? Do you remember the name of every face you have ever seen? Are you trying to be funny or to humiliate me in front of all your friends? Seriously, just introduce yourself before you start talking to me…

Asking the person next to me, whether I’d like something to drink. Do you think that my companion can read my mind? I can speak for myself thank you very much.

Touching or feeding my dog without my permission or after I asked you not to! I spend all day with Luca, I know what he needs and you are not doing us any favors by messing up his training because you assumed that you know better. Luca is a service dog, before anything else, this does not mean that he doesn’t get time to be an ordinary pet, it simply means that sticking to a routine and ensuring that his behavior is exemplary, is more important, because it keeps us safe.

Talking to me, without saying my name or indicating that I am being spoken to, when I am not the only person in the room with you. Should I have guessed that you were talking to me? I cannot make eye contact, I cannot intuitively feel that you addressed me specifically. I won’t answer if I’m not sure that the question was put to me.

Making blind jokes when you are not blind, we are not good friends or you do not have that kind of relationship with me. In other words, making blind jokes to laugh at me, instead of with me. The rule of thumb in this situation, is that if you do not know if I will think you are funny or just trying to make me feel bad, just don’t go there.

In the sighted world, there are all these pleasantries which must be observed. Despite the fact that I can’t see you, I make an effort to look your way when I talk to you, I do not treat you like a child because we are not the same. I do not point out that you have an annoyingly shrill voice or sweaty palms and I make an effort to know more about your situation, interests and common ground we may share, before I venture into personal territory with you. Is it really so inconceivable that I may expect you to do the same?

IT’S NOT WHAT IT USED TO BE

In my last year of school, I decided to go to a university far from home. I wanted to know whether I could survive on my own. I decided that it was time to learn to look after myself, do my own laundry, cooking and so on. Back then I had limited access to the internet and accessible websites were the stuff of fantasies… Needless to say, I was completely unprepared for the consequences of my decisions.

I arrived on a campus, in a city that has neither heard of, nor embraced the concept of public transport. I had to walk everywhere and everywhere was usually between 2-4 kilometers from where I stayed. This does not sound like much, until you add an 8 kilogram bag of dog food and some other necessities like coffee and milk to the load that had to get home. This trip took my boyfriend and I across insanely busy roads and uneven sidewalks. It took forever and we normally laughed ourselves all the way home, imagining what people driving by must have thought of us. We made that trip in the wind and the rain. him being the one that had to carry that bag,  normally had nothing but blisters to show for the effort and I usually had a bruise or 2 on account of gravity having such a strong hold on me. It is safe to say that it was a less enjoyable adventure.

If I didn’t want to do something on my own or couldn’t, I had to rely on sighted people, to drive and assist me.

I made lots of “sort of” friends that way, but I am glad that those days are mostly behind me. It’s not necessarily that public transport have gotten better or more accessible, but rather that technology improved and people became aware of disabled people in a way they never have before and what follows is a few things that improved my life beyond measure:

  • Online shopping;
    Gone are the days I had to wait for someone to pick me up and walk through a store with me to buy my groceries for the month. I still occasionally go to shops with sighted people, but now it’s more for some retail therapy than an actual need to go and buy basic things. My life is not only better because I have more independence this way, but now I also know about all the products available and I can make informed choices.

    • Uber;
      You had to know that this one would be on top of my list. It is just so convenient to have a way to come and go, at the tap of a button.
  • Screen reading software;
    This is not a new thing and has been around for years. However, over the last few years, it has become so much better than I ever imagined it could be. It used to be almost impossible to afford and very few blind people had the means to pay for it but today, you can download a more than adequate screen reader without it costing anything and unlike when I was still in school, visually impaired people have access to information and opportunities that we previously would have been denied.
  • “talking” everything;
    It started with talking watches and calculators, today, you can get yourself anything from bathroom and kitchen scales to microwaves, lifts, thermometers and the list goes on… If it wasn’t for online banking, I would have been disgusted that South Africa has not joined the world of accessible ATMs.

    • Text and character recognition software;
      There was a time when a picture containing text, a powerpoint presentation or a screenshot would have irritated me to no end, because I had no way of reading the text. Now I simply use apps like Seeing AI, and KNFB reader, to make text accessible. There are many other programs like these to choose from and it won’t always work, but at least now, there is an 80% chance that it might.

Technology and innovative ideas have not magically made all the challenges faced by blind people disappear, but the quality of our lives are improved by it every day and on the days where it feels like we live in a society that doesn’t care about our needs at all, it’s good to remind myself that 11 years ago, I didn’t have a cellphone with a screen reader and sighted people still had to read my messages to me.