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

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

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

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

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

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

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

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

Advertisements

IT IS A SIMPLE MATTER OF ACCEPTANCE

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

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

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

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

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

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

YOU CAN NEVER EVEN IMAGINE

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

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

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

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

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

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

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

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

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

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

Wait!

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

Where's Your Dog?

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

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

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

View original post 919 more words

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.