Talking about how a dog changed everything.
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.
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.
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.
To my absolute surprise, this blog has been nominated for The Sunshine Blogger Award; which recognizes and celebrates the creativity, positivity and inspirations of blogger’s work. I was nominated by Emma Purcell, the fantastic blogger from RockForDisability https://rockfordisability.com/.
Thank you so much for the Nomination Emma.
I am thrilled to be nominated and hope you get to know me a little bit better in this post.
1 List the rules and display The Sunshine Blogger Award badge in your post.
2 Thank the blogger who nominated you and link back to their blog.
3 Answer the 10 questions that the person who nominated you asked you.
4 Nominate up to 12 other bloggers to receive the award and ask them 10 new questions.
- Why did you become a blogger?
I wanted to share my experiences of life as a blind person in the hope that others can relate and accept that disabled people are pretty awesome but pretty ordinary too. I thought it would be a good way to show people who are not disabled that we are capable and competent human beings and to attempt to bridge the divide between disabled and non-disabled people.
- What do you like to do in your spare time?
I enjoy reading, watching series, drinking coffee and having long phone conversations with friends and family, spending time with my boyfriend and playing with our dogs.
- Who is your favourite band or musician and why?
I mostly listen to rock music with bands such as Breaking Benjamin, Red, Three Doors Down, and many others on my favorite playlist. I love the depth and emotion in the songs, You can feel the music, like it’s in your soul or part of you. I also like some cover artists like Madilyn Bailey, mostly because I love piano covers.
- If you could meet any famous person, alive or dead, who would it be and why!
Marilyn Monroe… She lived life on her own terms, she was witty and a little ahead of her time, I think. As for the living, I’d like to have a conversation with Ioan Gruffudd, Chris Hemsworth, Benedict Cumberbatch and Jim Dale. I don’t want to say anything, I just want to listen to their voices.
If you had a time machine that could take you forward or back, which time period would you go to and why?
I quite like the present. Technology is a blind person’s best friend.
- If you were an animal, what would you be and why?
Perhaps an owl, infinite wisdom and all that or maybe a dog, so someone can scratch my head all day long.
- You’re on a deserted island and you are allowed to bring one item with you? What item would you bring and why?
Sunscreen… I burn easily and anything else would be kind of pointless, wouldn’t it?
- What is your dream job?
Working for the UN or other similar international organisation, trying to make the world a better place for people with disabilities.
- What is your most popular blog post?
I’m not sure actually. A SERIES OF AWKWARD ENCOUNTERS WITH A GIRL ON THE EDGE OF ORDINARY, I think. It was a post about the weird things that happen to me, written between the lines of sarcasm and humor, which is exactly who I am and I think it was relatable.
10 What advice would you give to other bloggers?
Don’t lose yourself in an attempt to gain a few of followers, stay true to your voice and what you want to accomplish with your blog. Quality is always better, write because it makes you happy, because it is therapeutic and because you have an opinion. It shouldn’t feel like a chore or a popularity contest.
In south Africa, we are in the month of celebrating women and because I believe that women are more powerful than we give ourselves credit for, I nominate the following bloggers:
•Confessions of a teenage mutent
- What is your favorite part of blogging?
- What was the blog post you enjoyed writing most?
- What is your idea of the perfect day?
- Who inspires you?
- What is your greatest strength and how does it make your life better?
- If you could speak to the world beyond social media through one of your blog posts, which one would you choose and why?
- What have you done, outside your comfort zone that you are proud of?
- What makes you happy to be alive even when things are tough?
- If you could have a superpower, what would it be?
- What do you want fellow bloggers to know about you and/or your blog?
Thanks again Emma.
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?
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.
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.
- Text and character recognition software;
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.