Looking for a friend

Recently I came into contact with a teacher who has a 9 years old student struggling with Stargardt`s. I know there are some parents who read my blog and may have children who areliving with Stargardt`s around the same age.

We are looking for someone around the same age to connect over email and become an ePal with this boy. Perhaps share some struggles with each other and beable to relate to one another.
It`s tough dealing with this disease, but technology today has helped to broaden circles and close gaps, hopefully it would be easier going through the acceptance of Stargardt`s or any disease when you are able to share with someone in a similarsituation.

Once again, Request for ePal for a 9 years old boy with Stargardt`s

Dealing with Prejudice

Whether it is at work or in school, discrimination and prejudice will always follow those that are different.

Prejudice in Schools

Children often lack empathy and understanding for the different. Too often do we see kids picked on because they dress differently, act differently, talk differently and all other reason. The taunting, bullying, and teasing becomes part of the school routine. So all of it makes living with stargardt's that much harder. Afterall, it's bad enough havingto overcome the hardships of being visually impaired in this sighted world. It makes it that much crappier to be picked on and isolated by other kids who wants to be cool at other people's expense.


Unfortunately, this is the realiity of human being. Curtesy, respect, and understanding is a learned trait that links to maturity. Which just means that if you are different, there will always be people who will try to make you a target.

Work and prejudice

As we get older, the prejudice becomes less obvious. There is no doubt in my mind that there is still alot of discrimination towards the visually impaired. Except most of it is unseen, so no one gets in trouble.
Take work for example, I've gone through countless interviews which I can pretty much say, IF I WASN'T legaglly blind, I would hae gotten the job. Reality is, employers are still hesitant to hire someone that is "disabled" given that they have similar experiences and background. Of course no emploer would dare to come out and say, "i didn't hire you because of your sight", after all no one wants to be sued, but it doesn't mean the thought goes away. The only want out of this is to hope taht you meet an employer who will not judge you by anything more than your experiences.


So waht can you do? Not much besides be the best you can be. It's always been my philosophy that "we cannot control other's actions, the only thing we can change is ourselves" So if you are doing waht you can do, forget about those who are narrow minded, because if you are good at what you do, you will find your success and a place that appreciates your talents one day!

Useful Tool for Microsoft Windows

For those of you that do not know, Microsoft Windows (since Windows 95) had an imbeded function in all their systems. It's a program called "magnifier" If you look above, you will see a screenshot of what the program looks like. It's a strip of window that magnifies whereever your mouse points to.

How do I open the program? Where is it?

Simply go to you Start menu --> all program --> Accessories--> Accessibility -- > Magnifier

Or you cna goto Run... type in "magnify" click OK and it should call the ptrogram as well.

Magnifier with you mouse?

In certain MIcrosoft Model mouse, there is a special function that you can set one of your mouse buttons to act as a floating "magnifying card". This can be very useful because you would be able to open and close the magnifier glass with the touch of a button.

So which model has this helpful function? Look for Microsoft mice that has the "magnifier" function listed on its description. If it's not listed, it doesn't have it! For a list of products that include this function, go to the Microsoft sotre and search for magnifier. Or you can follow the link below to see.

http://store.microsoft.com/search.aspx?q=magnifier

You are as the world sees you? Or are you?

There's two sides to every story. And the same applies to identity. On the one hand you have "the way you are perceived or labeled as" and on the flip side there is "the way you see yourself to be".
Labels You may wear.The world treats you as you are labelled. People usually act nicer when you show that you are disabled. Sometimes its out of pity, sometimes out of generous gesture, but often its just because they don't know how else to act. They judge based on these labels they put on you. The truth is irrelevant, you are treated by the label you are given, so when they see you as a blind disabled person, they will treat you differently than a normal sighted person. Don't be stubborn and try to change these labels, accept them as how the world is and learn to take advantage of people's generousity. If help is available, why not make good use of it?
Who you really are...Understand that just because you may be labelled a certain way doesn't define your character and who you really are. There is no shame in having a disability, although it sometimes may not feel like that. Be confident about who you are and odn't let anyone tell you otherwise. When you are confident about yourself and comfortable in your own skin, you worry less about what others think.

Perhaps I am only able to say thsi after going through some soul searching and finding my place. It's a process of self-discovery but even if you are just starting to understand, remember this... "believe in yourself, you are unique and you don't have to be who people think you are"

I can't look straight anymore

One of the issues I've been struggling with recently is the fact that my eyes seem to not be looking straight anymore. The loss of my central vision is causing me to use my peripheral vision and as a result my iris seems to be looking in the direction slightly left or right of the object I would be look at.

This is causing some inconvenineces especially when talking to people. It used to be that I can get away with not telling people about my vision considition. But now its gotten worst, it's sometimes hard to "act normal".

I considered surgery, that is until I found out that its not my muscle that is causing the problem, its simply the fact that I cannot see in the central part of my vision. It was until recently, when I went into the eye doctors that I realized how off my eye is. I didn't reazlie I had lost most of the central vision since everytime i look straigh my eyes jsut automatically adjust and focus. It wasn't until I was doing an eye exam that when they told me to stare at the dot in the middle of the circle that I realized when they asked me to look straight, I moved my eyes around and eventually hitting the blindspot where its in the centre yet I can't see the dot anymore.

I'm not sure if this is omething I simply have to deal with or if there's a way of adapting and working around the situation. A friend suggested focusing on the blind spot and you will know you are looking straight. However, I am having trouble since my vision naturally shifts to focus and see. I'd love to hear others ideas of ways you have learned to overcome this challenge.

Accessibility in Life

As a visually impaired person, if I had to go out in the world without any aids, it is rather difficult to survive very comfortably. Our ability to adapt relies on a keen sense of memorization to details about our surroundings. Now imagine if we were put in a completely new situation/place, our ability to survive comfortably is very limited since the world around us is not very acessible.

Whether its road signs, building numbers, restaurant menus, grocery store labels, or even a simple price tag in any store, we are unable to see. All of which has one commonality and its the fact that I cannot see without outside aid. Sure thereis nothing wrong with asking for directions or help, but if it came down to how accessible these thigns are to a person with visual impairment, bottom line would be its inaccessible.

I would have to say the two worst things are menus in a restaurant, price tag in any stores. I mena really, do price tag need to be that small, wha'ts the harm in just up-ing the size of the font by one or two pouints, it would make everyone's life so much easier (even senior citizens) You have no idea how much I struggle with looking at the price of a piece of clothing or a product.

The world of the sighted can be a difficult place to live in. It is only recently that Toronto has began taking notice about the inaccessibility of our city. Like I mentioned, the transit system finally decided to implement a system wide upgrade in its stop annoucement program. We put the beeping sounds into the pedestrian crossing trafic signs.

Unfortunately, we still have a long way to go in order to make life more accessible. Whether its online or offline, I look forward to a more accessible environment in the near future.

Staying Mobile

No matter what city/town you live in in the world. I am sure mobility will always be one of the top issues when it comes to living with Stargardt's. I live in Toronto where the public transportation is considered as one of the top cities in North America. Although to tell the truth its not ideal, but then again I can't complain since it can still get me from point A to B relatively easy.

Take it from me when I say, NOT DRIVING SUCKS. I've hd Stargardt's since I was young, so I never had the chance to drive, although I'm sure if I ever did, I would love it. Afterall, I love the freedom of being able to go anywhere, anytime and in your own private space instead of having to wait on schedule busses.

However when it comes to public transportation, the city has had several accessibility improvements. First and foremost being the stop annoucements on the buses. It may sound fairly insignificant, but but its saved me numerous times from asking the driver to annouce the street name. Yeah, people will help if you ask them, but just having the automated annoucer gives back a certain independence that otherwise would not have been possible.

Although lately, I have been considering alternative transportations. One of which being the electric bicycle/scooters. These new "toys" offer a possible alternative in mobility accessibility. Since I cannot get a licence, I cannot drive a car nor ride a motorcycle. But these electric bikes are a good middle ground between driving a car, and having to take public transit or exercise myself. Unfortunately one of the major downside is that battery technology is still unstable and therefore the elctric bike is unable to travel long distances. Nonetheless, the beauty behind it is since its a hybrid between eletricity and man power, you can always ride it as a regular bike when you are out of electricity. (Now if only they can find a way to regenerate electricity into the battery) Why is it that I can't ride a motorcycle but can ride something like this, the answer is simple, the electric bike usually is very slow and can only go up to 60 km max but often averaging around 30km only.

natural lie detector

I was watching an interesting documentary and this time it's about lying in human nature. We all ie, whether its white li to help spare others feelings, others lie to make themselves look good. Regardless of the reason, it seem to hae come a part of human nature and everyday life.

So what does this have to do with Stargardt's? Well I'm not sure iits true for others, but for myself, I realized because of my inability to see, I have developed a way of observation method based on body language, voice, and just an overal instinct. It's interesting because it also allows me to detect abnormality in people's behavior, and I guess in a way become nature's lie detector.

Perhaps part of the reason why we areable to detect lies better tahn sighted people is we tend to pay more attention because of th fact that we cannot see, and also, many people may be good at lying with their faces but fail to notice the settle tone and pitches in their voice. They saya key in being a good lie detector is the attention to details, maybe it not so much that eople can't tell if someone is lying, but more so they just on't care. Everyone is so wrapped up in their own lives they often could care less if someone else is lying or not.

Just tought this wasaniteretig topc. Whether its a good or bad thing that we can detect lies, that's a whole other discussion.

View the following docclick below
http://www.cbc.ca/documentaries/doczone/2009/truthaboutliars/index.html

Importance of barrier free communication

Wagner explored the science behind secrets. It began with an experiement putting subjects into a room to speak as they liked. Prior to going into the room, they were instructed NOT to say "white bear". Sounds simple right? Well, not exactly, the participants went in and spoke as they liked, but they kept finding themselves tempted to say w"white bear". The overal psychology behind this is the more you try to suppress and limit a thought, the more conscious you are of it. This phoenomenon can be a secret, a fear, a temptation, or any other restrictions or parameters. As a result, it shows the importance of barrier free communication.

When a person is able to freely express themselves, they remove themselves from the stress and anxiety of keeping a secret. However, if one chooses to be fearful of their fears, it will only build and amplify itself. So the moral of the lesson is, don't be afraid, don't try to hide something, because the more you try to hide it, the more stress it will cause you. The most you can do is try to free yourself of these restrictions.

I know its easier said than done. But have the courage to confront these "secrets" and you will be free at last. Let go some of the emotional baggage you hold, and you will become a much happier person.

To tell or not to, that is the question

How many of you wondered if you should tell the person you meet that you have Stargardt's or is visually impaired? How do you bring it up without it being awkward. What i've noticed most if after you bring up this topic, most people sometimes become uncertain as to "what they can ask" and afraid of offending me.

Since I've been job hunting lately, I thought I'd talk about the issue of discloing your disability. Truthfully, if I had a choice, I would like to keep it under wraps until I am hired. It hard not being labelled and you can never really know what the person sitting accross from you is going to think.

But for me, I've been really upfront about myvision or lack there of. Most people will have nice response and friendly about it. Although whether or not it hurts your chances of being hired, I would probably say yes still. We live in a prejudice and sterotypical society, so at the end of the day, you have to expect thse people will be. Is there anything we can do about it? well if you ever get the chance then you might be able to "prove" yourself, but otherwise its good luck and learn the art of moving on.

When it comes to social settings, I don't usually mention it unless its necessary. I try to do things on a need to know basis, and if it won't affect my interaction with this person, then I don't see a need for them to know. But I always find it funny how because I look "normal" and at "normal", sometimes even after telling them about my vision problems, they still forget the next time they see me. Afterall, most people think its bad, they just don't realize how bad...

Revolutionary Road-- Making a choice

Its a great movie about a couple wanting morein life but settling because they don't want to take the risks. Too often do people fail to acknoledge the choices they make but rather hide behind excuses. They say " I can't because ...." not "I won't because...", they don't want ot admit that it is their fear and insecurities that led them to their choice, they don't want totake the responsbility of making a conscious choice.

Rarely is there anything you can't do, but when youchoose not to, at least have the guts to admit its a choice out of fear and acept what it is you are giving up. It makes me mad seeing people making excuses for their action, not to say I don't do it myself, but I try to live by this. Accept the decisions and consequences of your decisions, accept the sacrifices you make when you make a choice. Acknowledge your fears, try to overcome it, and if you don't wnat to, don't make excuses saying why you don't.

Please don't say "poor me", because you always have the choice to change your life. There's always a choice, it may not be something you like but there are always alternatives. Don't limit yourself by saying "I have no choice". Take responsibility of your actions, have the power to make your own destiny and future.

Do the best you can, and leave the rest to fate or god or the world.

Relationship with someone that is legally blind

Its never easy having any relationships. And it's even harder to have one when you are legally blind. The person you are with needs to be understanding, because there will be things that you will rely on them for, and there will be things that you cannot do because of your vision.

For example, as much as you can get around in public transportation, chances are you will never be able to drive and the other person would have to be the driver always. Same goes for looking for roads or directions, as good as I am with directions, I am unable to see the road names and it is impossible for me to help especially if its somewhere I've nver been.

Somethings can't be shared because you aren't able to see, like if you're on the road and they see osmething funny, odds are you won't be able to see or know waht they are talking about. There are actions that come naturally to those that can see that they forget or do not realize how hard it can be for those that are legally blind. There may even be times where the sighted person is frustrated because they feel they always have to do certain things.

But no matter what the issue is, don't be afraid to talk about it. Misunderstandings happen when things are left unaddressed. The key to any relationship is open communication, mutual respect and understanding, and love. The same grounds apply for a relationship with a visually impaired individual. Sometimes, you just need to be patient and loving, and the rest will fall into place.

Going to school part 2 - Tips for University

When I went to University. I received much support with reagards to my disability. Aside from the not takers, extended time, enlarged fonts, and counselling support. I also received funding for much of my equipments (laptops, magnifiers, CCTV, and screen reader programs)

Difficulties @ University
Unlike highschool, often university lectures are held in large lecture rooms with the professor talking while referring to a powerpoint presentation. This made it almost impossible for me to see either using a monocular or my own eyes. A few years back while I was in unversity, there wasn't any portable CCTV cameras that we could carry with our laptop, which meant for the most part I was unable to see what the professor was refering to. What did help was reading ahead of time, it would give you a much better sense of what is happenning and give you a way creating mental images in place of the slides.

Depoending on your chosen subject of expertise, there may be a lot of reading involved. Make sure you give yourself plenty of time to read through since itmay give you an eye strain. Time management and hard work is required to help discipline yourseld in your studies.

One of the dicfficulties is with socialization. Since I was at a very large and scattered university, problem became that I may meet a person and never see/recognize them again. More often than nothing, you meet a person for the first time and never sees them again. Its also makes it difficult to "sit with your friends: since we can't really walk into a lecture hall and look for people.

Library use/research may also become difficult But you can probably ask the librarians for help in locating items. Although some materials may be in library use only, it may be worth your while to simply photocopy and take it home.

My advice to Unversity life is, try everything and expose yourself to what happens in university, there are clubs of all kind and by getting involved you will have a much better experience both academicly and in your life.

Going to School part 1

Well been off topic a little lately so I thought I'd write more about SD. I went to regular schools throughout my life. Did I struggle? Not really. I would say I've been lucky enough to be blessed with good logic and was taught very good math fundementals at a young age which made my life a whole lot easier. But for the most part my marks were consider above average.

Its not to say I didn't have help. Ever since I was diagonosed with Stargardt's I was assigned a "speical teacher/counsellor" to meet with me every few months and made sure I was doidng ok and any request I had for accomadations were being met to the best of their ability. Although there wasn't much to do, the greatest help I got was having large print math textbooks. That made my life so much easier.

The biggest Challenge...
I think teh biggest challenge for me was reading. IT wasn't that I couldn't read, butit took a long time for me to read. Since I can't see that well, it takes me an extra few milasecond to look at a word and read word by word. Scanning text is almsot impossible for me. That's why I always dreaded reading novels, and to this day I still don't have much patience for reading novels.

It wasn't jsut reading that was troublesome, seeing the chalkboard and notetaking was difficult. My mom even helped me copy my notesandd I had those special paper that wrote two copies at once so when my friend copied notes from the blackboard she was writing for me as well.

Cursive writing, or script has always been a vice to me. Even to this day, it takes an extra effort for me to read. If the person's writing is nto clear, it would take me long time to "deciper" it. And even now, I write in print for ease of reading.

Visaul Aids,
I had quite alot of things to help me. Before the time to computers, and video magnifiers, I had a handheld magnifier, a monocular, a CCTv, speical dark line single paged notebooks, those dual page paper,all of which made my life a whole lot easier. I wrote notes and everythign in black ink pen because it was easier to read. Sometimes I would receive photocopy notes, or even enlarged music score for my instrument music. Although with al lthe aids in the world, the first thing ou need to learn is to have patience since it usally does take longer for us to work on a project or anything.

To Be Continued..

Tolerance

I used to think tolerancce is a virtue. But more and more I'm beginning to wonder if it just gives people a reason to step all overyou. In this selfish society we live in, tolerance for bad behaviour COULD be the cause of why these behaviour exists. If you let people treat you badly, in a way it is telling them its ok to do so.

I would like to say I have a very high tolerance of bad behaviours because I believed and hoped that people will correct their actions by themselves. But I finally realized how foolish I am to think that.

So my advice to all, don't tolerate crap, in this society, the one who does not speak will be the loser. Just because you CAN tolerate something doesn't mean you SHOULD. But its a fine line between being understanding, and tolerating bad behaviour. No matter what, don't lose respect to yourself, otherwise no one will respect you.