Jan 16, 2014

Youth Space Spotlight: Jessica

1. Can you share with us what retinal eye disease you have and when you were diagnosed?

The retinal disease I have is called Stargardt’s. It is when one has no central vision, but the peripheral vision remains. Although the peripheral vision does remain, it varies as to how much or little for every person. As for myself, my acuity in the vision I have left (my peripheral) is 20/600 in my better eye and 20/800 in my worse eye. I have extremely low vision. When I try to explain this to others I always say, “Your central vision is where you see detail. When you see something out of the side of their eye, you automatically turn your head to face it straight on so you can see it fully. As I do not have any central vision, I have no detail vision.”
I was born with this retinal disease as it is a recessive gene, meaning I contracted it from both of my parents. I was diagnosed at age 6, as it did not fully develop until that point. When I explain my vision loss to people I often get asked if I would have rather lost my vision later in life. My answer to that is always, “No, if one were sighted for a good part of life it would be much harder to transition. I was so young and I didn’t understand, I thought the way I see is the way everyone sees. My parents were the ones that figured out something was not right. This is all I’ve ever known and I’m more than okay with that, I’d rather it be this way.”

2. Did vision loss have any impact on your education choices?

My vision loss does not define who I am, but it is a major part of who I am. Therefore it impacts every important decision I make in my life. For example I want to stay at home when I am attending college. I’m lucky that Conestoga College is not far from my house at all, and there is bus transportation I can rely on. I am an academic student, and I am considering going to university after my two to three years at college. Maybe I will stay in residence while attending university, but those are decision I’ll be making in a couple years.

The path I have chosen to go into is Social Work. When I was younger, I always wanted to be a vet, but as I grew older and my vision got worse I decided I didn’t want to anymore. My decision to go into the Social Work field has a lot to do with the challenges I face on a daily basis due to my vision loss. Going through so many more struggles than the average person, especially as a teenager, makes you more understanding of what others are going through. For the longest time I have wanted to possibly be a counsellor for those with disabilities. I honestly have no idea if there are counsellors specifically for those like myself, but even if there aren’t I would like to help people overcome the hard times in their lives.

3. What do you do for a living? How have you adapted your career to your vision loss?

As I am only 18 and just completed high school last semester, I am taking time off before I attend post-secondary to be well prepared. I am currently volunteering at where I did my co-op placement last semester, the CNIB office in Waterloo. This summer I am also hopefully  attending the Guide Dog School in California to train and graduate with a guide dog of my own. I also have a lot of new equipment to learn before going to college as well as relearning my grade 2 Braille. As a result, I will not be attending college this September, but will begin in September 2014. It’s better to take your time to be more prepared than to rush into everything. I’m taking my time in order to be as successful as possible.

4. Can you share with us how vision loss has impacted your relationships?

Well for example, if someone is not comfortable with me using my white mobility cane they are not my true friend. I’m the one that stands out, and as I use it almost everywhere now that I’m comfortable with it. I have those friends who aren’t good at explaining things I can’t see or aren’t as sensitive to assisting me as others are. Yes that does frustrate me at times, but I know I can’t change them. I know no matter how many times I explain it to them they will never understand unless they go through it themselves. I know it doesn’t come naturally to people, to help those with disabilities. It comes naturally to them overtime while they get to know you, and then they learn in what ways they can help you. Everything takes practice, that’s why I don’t get upset about it.

I have quite a large group of friends with vision loss and that is great because I can talk to them knowing they completely understand. Friends I do have that are sighted, there are only a few that are good at helping and I appreciate them so much. The littlest things they say like, “Jess curb is coming up in a few steps,” shows they are not all into themselves and they are concerned about helping people they care about.

As I said above those who understand completely are those who are going through the same challenges in their lives, those living with vision loss. My wonderful friends who also live with vision loss I am beyond grateful to have in my life. When I’m with them I feel completely like myself, like I completely fit in. They are like family to me.

Speaking of family, mine is great in helping me in every way that they can. They are much more understanding than the majority of the world obviously, and although I am the one living with Stargardt’s they have and continue to face challenges with me as well. I couldn’t ask for a more supportive family and that includes my immediate and extended (sister, parents, pet dog and soon to be guide dog, grandparents, aunts and uncles, and cousins).

5. It’s no secret that vision loss can lead to anxiety and depression. How do you maintain emotional balance?

Everyone has there days where they get upset, whether they live with any type of disability or not. I have no doubt that we are stronger individuals because of how much more we have to deal with and adapt to over the years. It is not easy to live in a sighted world when you’re not sighted, but it’s possible. We just do everything differently, in the way that works for us. We have our days when we want to throw things across the room, scream into our pillows, or have a full out crying session. Days when I feel like that I remind myself that it’s okay to have those moments because we are only human. Letting yourself breakdown sometimes makes you all the more stronger as a person because no one can be invincible all the time. I tell myself this is me and I love who I am. The worst thing you can do for yourself is hide your emotions, so don’t be afraid to express them.

6. What accessibility aids can you not live without?

Out of all my adaptive equipment the one that took me the longest to use is my white cane. Everyone who uses one and is now comfortable will understand where I’m coming from. It’s not easy to stick out like a soar thumb, to let everyone know you’re blind.

I know people are clueless about vision loss and I know most don’t understand that there are several types. People think you’re either fully sighted, or you’re completely blind. I know when most people see a white cane they assume you’re fully blind. That bothered me at first, but now it doesn’t. I’d rather most sighted people think I’m fully blind, than assume I’m sighted like them.
I know I can’t speak for everyone living with vision loss, but everyone I know who is legally blind and a cane user, knows that comfort and confidence with using the cane doesn’t come easily. Although this piece of equipment took me the longest to be totally comfortable with, it has opened up an entirely different world for me. It has made my life so much easier. Before I didn’t want to label myself as a blind person, but now I don’t think of it that way. I think of it as making the world aware of my vision loss to benefit myself. It makes others cautious and helpful (if they want to be) because they know you can’t see. More importantly it’s for my safety.

When I receive my guide dog I won’t totally ditch my cane. Although I will bring my dog almost everywhere, there will be those times where it isn’t appropriate to bring my dog because it wouldn’t be fair or comfortable to him or her (for example to the movies or a concert). I think of the cane as a huge step in the right direction. For me it helped me realize a guide dog is what would be the best fit for me. I know my confidence will grow even more when I am a guide dog user, and I plan to be one for as long as I can.

Just recently I got the iPhone 5 and I love it. I don’t need to read my BlackBerry with my 15x magnifier with the font on the biggest and the boldest (which still did nothing for me without my magnifier). Due to the great accessibility features built into the iPhone such as Voiceover and Siri, I no longer have to strain my eyes to try and read everything. My iPhone can read everything back to me through Voiceover, and I can also tell it to do things for me through Siri. I use several other adaptive devices as well as my adaptive programs on my computer. My Nana hates technology because it confuses her so much, but she loves what it has done for people like me! Without technology I don’t know where we would be. We already have to work twice as hard at everything, that’s why I am so thankful for the devices and accessible programs that are available today for our benefit.

7. Our 2012 Toronto Vision Quest Youth Panel agreed that we all ‘hate’ 3D movies, revolving doors and garbage days. What’s your pet peeve?

Yes, I definitely do not like 3D movies at all! It’s hard on your eyes and I personally already can’t see the detail in movies, so all 3D does for me is make my eyes more tired. I am lucky in that I don’t have any revolving doors where I live, at least none that I’ve come in contact with. The only time I go through any is when I’m in Toronto. As for garbage days, amen to that! When the garbage or recycling bins are blocking all or half of the sidewalk it’s not fun.

Other than all of these I’d have to say one of my number one pet peeves is when people don’t move out of a seat for you when you get on the bus. When you can’t see the stops or turns that come up as the bus goes through its route, it isn’t easy to stand without almost falling over several times. Out of the hundreds of times I’ve taken the bus there’s only been those few times I’ve had to stand so it’s not like it happens to me often. The thing that bothers me is if there isn’t an available seat, which is already extremely hard for me to see, sometimes I have to ask someone to move. I shouldn’t have to! If passengers see someone come on the bus with a mobility device for a disability, at least one person should automatically move out of common courtesy.

8. If you could go back in time and talk to your younger self about vision loss, what would you say?

Just recently one of my sighted friends read me what I wrote in my diary eight or nine years ago. Obviously people change growing from a child to a teen and then a young adult. The one thing I would have told myself is that I AM normal. That word…oh how I despise that word. Seriously what is normal? Even those living without a disability, they aren’t normal. No one is normal because we are all different in our own way. I would have told myself that I’m wonderful and beautiful the way I am.

I remember the first time I was ever bullied. I was 9 years old attending a church camp. You’d think that would be the most unlikely place for bullying to take place right? All through elementary school I got teased and obviously it upset me extremely. I got through it though, and all those people who bullied me had nothing better to do than make others feel down about themselves. Being bullied over your disability is the worst thing one can be made fun of for because we can’t change it – it’s a part of who we are.

Overtime I developed the strength and confidence to stand up for myself and will continue to do so. I have not been bullied since I was 14 years old, but I’ve had rude comments from rude people, and I know I will throughout my life. When that happens I stand up for myself and move on. I refuse to let people like that bring me down. I don’t feel sorry for myself anymore when I get treated like that, I feel sorry for the person who is insensitive enough to try and put someone else down.

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