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.

THAT TIME I DECIDED TO BECOME A CARD CARRYING MEMBER OF THE BLIND CLUB

It is no secret that I am happy to be part of the blind community… That being said, I loathe the word “blindy”. The meaning of it is pretty accurate as I am in fact blind, I do take the blind approach when doing most things, but the way that word sounds irritates me to wit’s end. It’s almost as bad as when people shorten “jealous” to “jelly”, it makes my skin crawl.

So terrible vocabulary aside, immersing yourself in this community is not all bad.

Just like with any other group of people, there are politics and drama, we don’t always agree with each other and things can get a little awkward at times because some of us, have known each other all our lives, dated, kissed, fought and broken up. To tell you the truth, this community is so small that the chances that your boyfriend will know your ex-boyfriend are somewhere between probable and “they were once upon a time, the best of friends”.

I know, you are waiting for me to tell you the good stuff and I’ll get to it eventually… But first, it’s important to know that you will find yourself waste deep in conversations on the best technology to use, the best way to sort your clothes, the easiest way to cook and why you have been doing it wrong all your life. When you find yourself in this whirlpool of opinions, it’s okay if you don’t agree with everyone, it’s even okay for you to say so, because people can get a little passionate about the things that work for them and forget that even though we all have more or less the same problem, albeit in varying degrees, we are not the same and different things work for different people.

There will be things that annoy you! For me, it’s the people who perpetuate myths by posting comments on social media about their abilities to hear significantly better than sighted people, or that it is always possible to judge how full a cup is, by listening to the sound as the liquid level rises. I get angry when disabled people are rude to non-disabled people when they show interest or offer assistance. I know it gets old, but scaring them off benefits no one. Mostly though, I get frustrated when blind people are happy to accept charity from others, ask for hand-outs without ever trying for themselves and when they show no interest in being productive members of society, simply because they are blind and they see it as their right to get things others must work for because the world owes them for being blind. I believe we are better than that, we have so much to offer and those around us deserve our best efforts. Disability sucks, but blaming everyone won’t make us see. We have come too far to settle for pity and degrading treatment.

Now, don’t get lost in the half empty glasses… remember that we are a group of people that have a lot to deal with. Blindness doesn’t mean that no other horrible things will ever happen to you. So on top of blindness, there are people suffering from mental illnesses, other physical disabilities, illnesses, loss and disappointment and in spite of all that, they thrive, they live, they do the best they can and we deserve each other’s respect. You might even find yourself learning a thing or two about coping strategies, soaring in the face of adversity and fighting your demons with grace.

Nowhere else will you find yourself laughing so hard that you might be in danger of cracking a rib. You will hear the best stories about the most embarrassing things that can possibly happen to people and the blindest mistakes that have ever been made.

You will be part of a family, who will accept you with all your faults if you give us a chance. You will have loyal friends who will pick you up when the ground moves beneath your feet and you won’t have to be alone in your disability. Everyone knows what it’s like to be blind, to have moments when you have no confidence or strength left to do the things that must be done and what it’s like to feel like nothing is ever easy.

If you look passed the flaws of this community that ultimately means well, accept that just like everywhere else, there are good and bad friends and moments and advice, you might actually enjoy it here.

No one said you are not allowed to still be part of the sighted world, that is impossible, but it’s nice to spend time with people who share your interests, who are used to your talking phone, low vision gadgets or the way someone keeps describing each scene of a movie.

Most of all, it’s fantastic to be part of a group, where you are not the blind person, but where all the other parts that make up who you are, are recognised and your disability is insignificant and hardly ever mentioned.

IF WISHES WERE HORSES

Once upon a time, way back when I still believed in fairy tales and Santa and unicorns, during long car rides or boring undescribed movies, I used to play this game with myself… The “what would I want to experience most in the world, if I could see for an hour” game. Back then I tried picturing the faces of my family and friends, I wondered about a world in color and I imagined starry skies… I dreamed about looking at photos of myself growing up and once or twice I even considered time travel for that hour to see what my future knight in shining armor would look like.
Then… I grew up life carried on and I forgot about it completely, what with learning how to be properly blind, deal with public humiliation, surviving being a teenager… those fun character-building stuff and all… It kept my mind otherwise occupied until recently.
It all started with the itty-bitty personal space issue I have. The irony, I know. You’d think that growing up blind and attending a school for the blind where I was no stranger to constantly touching people and objects, would cure a person of being uncomfortable with being touched or people being too close. That sounded much less creepy in my head. Side note just to clarify any confusion that statement may have caused, the touching wasn’t inappropriate. No seriously, it was all very innocent.
Think about it, in a large group of people, or while walking and talking, it’s easier to keep track of a conversation with someone if you actually know where they are and that they are in fact still there. Sighted people call this eye contact… Something which is a little more difficult when you have no eyes or your eyes are useless, hence the handsy business.
“And finally she gets to the point.”
So if you haven’t guessed by now, I really dislike being touched. I don’t like it when someone crowds my space, I like hugs just fine, so long as you know when I’ve had enough and FYI there is a difference between a hug and pinning me down. Which brings me back to that game of, “what if”, I used to play.
The brain’s ability to memorize things is a bit of a mystery. If I understand people who have gone blind later in life correctly, memory is a bit like scripted reality. There’s at least an element of accuracy involved. At first you can picture the things you saw with “blinding” clarity and with time, the memories fade and your imagination sort of goes wild.
It is my lack of a desire to constantly have to use my hands as eyes, together with the knowledge that even if I could see the people in my life, I would forget what they look like long before I’ll be ready, that finally provided me with my answer.
Drum roll please?
If I could see for just one hour, I would want to experience eye contact and being sighted in general.
I’m sure it’s actually incredibly boring, I mean the feeling of looking into someone’s eyes and having them look back, has to be more mundane than what I have imagined it to be, but then again, at least for that hour, I won’t find myself talking to someone who has already walked away or who has turned around to talk to someone else. I won’t answer someone who was actually talking to the person behind me and what if I really could look into someone else’s eyes and actually know what they were feeling instead of having to rely on what fall from their lips?
While all that sounds like a jam, I really just want to know what it’s like to walk beside someone without the need to touch them to know where they are, or to take a stroll, hand-in-hand with someone I love, not so that I can be guided, but just for the pure joy of being touched under circumstances that don’t make my skin crawl or is disability related…
I have a pretty creative imagination, but somehow, these are the things that I can’t even picture in my wildest dreams.

BLINDNESS IN A NUTSHELL.

Blindness is not something that can be explained. There’s a difference between seeing only black and seeing nothing which in itself is not something that can really be understood by sighted people, but I think that trying to define partial sight is even more difficult.

I have been told that I have about 7% sight in both my eyes. It does not sound like much and in reality, it’s probably even less. I think the best way to explain my sight, is to imagine that my entire world is shades of light and dark. My light perception is good, so I can see that it is sunny or overcast, streetlights and the moon have often looked like the same thing to me, but once I know what I am looking at or where too look, I can usually tell the difference.

Doctors have explained to my parents that my sight is a bit like looking through a dirty lens. I am not quite sure what that looks like, but I’m pretty sure they were wrong. My sight is not blurred at all and I don’t have blind spots either. My sight is quite clear, it’s just really bad. I can see the outline of things, but I can’t fill in the details. I am completely color blind so most things are either very light, very dark or somewhere in between. I think my imagination also completes most of the details of objects I look at, because if I look at it without knowing what it is, it often just looks like a big blob, but once I know what it is, I can see the outline or shape quite clearly.

As a child, grown-ups used to blindfold sighted children in order to give them an idea of what blindness is like and while I appreciated the sentiment, it was actually a little bit pointless.
While blindfolded, those children would be led around in environments they knew well or were familiar with, they were warned of steps and told of their surroundings and it gave them a false sense of actually understanding visual impairments. Afterwards, I would trip and fall and they would just laugh and tease me about being stupid, because it didn’t happen to them while being blindfolded…

The truth is, that they were blindfolded under perfect circumstances and in the real world, conditions are hardly ever perfect, but if doctors have trouble understanding blindness, how do you explain it to a child?

The other problem with this little experiment, is that those children knew that it was only temporary. If they felt scared or unsure or they were simply tired of seeing nothing and when the game got boring, they could remove the blindfold and go back to a world of color and depth and distance… For a blind person, that is obviously not possible and enduring blindness, is much easier if you know that you can make it end when you need sight.

People always want to know what it’s like to see through my eyes, what do I see, what do things look like and what do they look like… To me. However, those questions are peripheral to the real issues at hand. Is it possible to live a normal life in spite of your disability, how will you manage to function in a working environment specifically designed for non-disabled people and how can the quality of your life be improved?

Pretending to be blind, did not teach those children to actually take a walk in my shoes. It did not encourage them to really think about my life. It was merely a fun game to them. They didn’t walk into doors, stumble into thorn bushes, they did not have to let other people dish their food for them or have to be guided to a bathroom. They did not have to consider a life where people would treat them like children way passed adulthood or being shunned in their communities for being freaks. They removed those pieces of cloth from their faces and most of them became the people who never again gave disabled people or their lives a second thought.

I used to want people to understand what it’s like to be disabled, but that was the desires of a child who recognized that she was different in a way she didn’t choose to be… Today, I don’t care about other’s comprehension of my life any longer. Today, I care about inclusiveness and awareness. I go out and be around people who aren’t like me and teach them that for all our differences, like them I am also just human. My situation might be a bit strange, I often need assistance with things that make us a little uncomfortable, but just like that game of pretend, I always hope that  we can perhaps pretend that my situation is perfectly ordinary and eventually, my blindness and my often weird behavior and requests, can be looked over in exchange for relationships based on our personalities instead of pity, obligation or a morbid fascination with my life.

You don’t have to know what and how I see, the important thing is that you know who I am and that my disability has very little to do with that.

I CHOOSE THE DARK SIDE

To better understand where I’m coming from, perhaps start here https://wp.me/p9MbFy-s

Do you remember when you were a child how your mom would threaten to leave you right there in the supermarket if you didn’t stop misbehaving right that second? Boy how that sobered you up real quick… Now that you are an adult, perhaps you say this to your children… but have you ever in the middle of an argument with your significant other or besty stopped and informed them that If they don’t cut the crap right now, you will leave them right there? Do you think it will have the desired effect? I mean, you drove but they can just hop on a train or a bus or get an Uber… So in all likelihood they will laugh at you and tell you to go ahead. For me on the other hand, this is merely another form of bullying. If I don’t have my guide dog with me, this is a terrifying yet effective threat because if you leave me there, I will be stuck, I won’t know how to get home, I will panic, I will be angry, but you would have made your point because I need you and you know you have the upper hand.
It’s the most degrading way to treat a blind person, because you will have used my blindness to make me feel like a child who did something naughty. If you think this doesn’t happen, you are wrong, it happens all the time.
This is why I am on team “pro blindness” when it comes to dating. I am fiercely independent, I am terribly opinionated, I want mutual respect and equality in a relationship, far more than I want to be cared for and coddled and most of all, I do not want to be treated like a child. I am not saying that this is bound to happen, only that as with many other blind people, it has happened to me and I can’t live like that.
A relationship should be a safe place, as a blind person, I face so many challenges in my daily life, I get pushed around and I must always be strong and put on a brave face. When I get home, I want to feel like I am valued as a person, that I am loved and respected and that my opinion matters. I want to be with someone that will call me out on my nonsense without making me feel 5 years old. I want someone who says that he believes in me and actually does, I don’t need to be placated or patronized… I want to be with someone who expects me to rise to the occasion. If I say I’ll make supper, he must know better than to take over, when I make coffee, he should ask me to make him a cup too, instead of grabbing the kettle out of my hand.
I want to be an equal in my relationship with the person I chose and who chose me. I am once again not saying that a sighted person won’t do all these things, merely that I am guaranteed these things with a blind person.

I want to watch audio described movies together, without complaints, I would rather read a book than go out and my idea of the perfect date, is not to go to a fancy restaurant and be subjected to 2 hours of public eating and people watching. I do not like crowded places, because I can’t hear when I’m being spoken too and clubs make me feel blind and deaf. If I go on holiday, I need adventure, sightseeing is my idea of a snooze fest and while I’m willing to do this with friends or family, this is not a compromise I can make in a relationship because we have far more days and months and years together and we will go on far more holidays together than I will with friends or family.
I don’t need the person I’m with to replace my parents, I am quite capable of taking care of myself… I therefore can’t be with someone who will forget this and 20 years down the line blame me for making him responsible for me. I did not ask you to do everything for me and I do not want you too either.
I have been blind for as long as I have lived, I know more than anyone how that changes things, it makes life complicated and not everyone is equipped to deal with all the ups and downs presented by being with a disabled person. Life will not always be easy, there are good days and bad days and on the bad days I need to be left alone. I have made peace with my disability a long time ago, but every now and then, I need a minute to come to terms with it all over again. There are times when I will feel hopeless and disillusioned and there will be moments when it will take me an eternity to do something that a sighted person could have done in a second. People will always stare at me, I will always have trouble finding jobs, I will complain about a lack of accessibility and accommodation until your ears bleed and you won’t be able to do a thing about it and more importantly, I will never change, I will never be able to see, this is it! this is me! and while there are many sighted/blind couples out there making it work, we all have to decide for ourselves what we want and what we can live with and then we need to find someone that can be that person for us and while I know that someone with sight might meet all my requirements, it is simply not what I need. It might seem like choosing to be with a blind person will make life harder, but it also makes my life easier because we both know what we are getting into and in this at least, we are equals. It is a support system like no other, we have the same struggles and triumphs we know when to laugh and when to let it go and we encourage each other to be stronger and more determined because there simply isn’t an easy way out for either of us. For me, being with a blind person, is the closest I’ll ever get to feeling normal.