The Power of Self-Advocacy

I KNOW I HAVE NOT WRITTEN IN AGES.....AND BOY, HAVE I MISSED IT! Applying to colleges has worn me out lately! It seems like all I have been doing these days is writing essay after essay after essay! So...instead of jumping straight back into the blogging scene/lifestyle, I decided to share an essay I wrote with y'all. It's not finished being edited so forgive me for any grammatical no-no's. Here goes:




I believe in the power and necessity of self-advocacy—finding that healthy balance between passive and aggressive. I believe in speaking up and allowing my voice to be heard when my needs aren’t being met. While I stand firm today, a zealot for self-advocacy, I once stood a meek sixth grader, center-stage at a vocal audition, afraid to use my voice.

For any performing artist, an audition has the potential to be an extremely uncomfortable situation. Imagine being a performer with a physical challenge. All you want to do is succeed and not look any different than the high-kicking, triple-pirouetting average Jane towering next to you. As a kid, I could get away with looking cute and hiding behind my vision impairment in auditions; however, being a teenager was a different scenario. I remember my Annie audition, July after sixth grade. Callbacks. Two girls left in consideration for the role of the frizzy, red-haired orphan America adored. I remember feeling on top of the world, feeling like I was really something else…until the director called me to the judges table and told me he could not cast an Annie who’s eyeballs moved back and forth the entire way through the show-stopping “Tomorrow.” He gave me a second chance to perform the number, and I tried with all of my might to focus my eyes on the green exit sign, but the tears pushing out were not much help. I could not go through another audition like this.

Something had to change, or my performing career was going to spiral downward fast.

“You are enough,” her words echoed in my ears as tears fought their way out of my timid eyes. “You cannot let this beat you,” continued Mrs. Amy. She held me close and I gently inhaled her lingering scent of menthol and flowery perfume. “Alie B.,” she continued, “from today forward, you must voice your needs whenever life places a challenge in front of you. You cannot remain on the same plane as everyone else if you sit quietly in the back afraid to cause problems. Your needs are valid, and deserve to be met.” While the tears gently cascaded, I knew she was right, for I regarded my voice teacher with saint-like reverence. However, it is no easy task for a thirteen-year old girl to be reminded of how to cope with her vision impairment, even if the reminder is coming from someone so highly respected. As I looked into her eyes that frigid February day, I knew that I was different and that my eye disease was no longer something I could hide behind.

No, I did not march out of the voice studio with my chest raised and fist pumping skyward. My quest to becoming a master of self-advocacy took three years to complete. But I did cling tight to Mrs. Amy’s words, words that inscribed in my memory like the remembrance of her comforting scent. I began my journey by asking more questions in ballet class when I couldn’t see the details in the adagio arm positions. I felt like a nuisance times, but I was voicing my needs, right? Isn’t that what I was supposed to be doing? My people-pleasing nature tried to attack my new advocating attitude often, but I strived for my new self-advocacy skills to prevail.

As months passed, the uncertainty I once felt about voicing my needs transformed into empowerment. I began to understand that becoming a star self-advocate took extreme persistence and much practice. Fortunately, I had a strong support net of individuals and mentors like Mrs. Amy who encouraged me to keep fighting when my needs were not being met. Not only would these mentors encourage me to keep my chin up, they equipped me with phrases of affirmation to strengthen me in uncomfortable situations.

Lucky for me, I was fortunate to be born with the Gorrie gene of determination, which is a key factor in successful self-advocacy. After a year of practice and a few failed attempts, I succeeded in voicing my needs in an audition situation! I was auditioning for a year-round theatre company, and I knew it was my time to shine. My successful vocal and acting auditions gave me the fuel I needed to keep my head held high through the dance call. Before learning the combination, I marched over to the choreographer and told him that I had a vision issue and would need to stand in the front row while learning the combination, that switching lines was not an option for me. Done. Finished. That was all I needed to say. The choreographer gave me a high-five and told me to “knock ‘em dead.” Empowerment surged through my entire body as I leapt, turned, and kicked my way through an extremely successful dance audition. Ultimately, I had nothing to lose. All I did was unlock the door to my success, and that door would remain wide-open from that day forward.

My belief in self-advocacy is strong, and will forever remain strong. I stand today, a senior, with the privilege to talk to other visually impaired kids and teens about self-advocacy through IMPACT conferences four times a year. And even now I cling to Mrs. Amy’s words as a daily mantra, “Your needs are valid and deserve to be met. You are enough.”

low vision CAN NOT be put in a box

So...I just got out of a meeting that enraged me to the point of cursing in front of my mother, doctor, and occupational therapist (which is not something i do on a daily basis). While we were brainstorming about the future of Songs for Sight funds, Dr. D. told many horror stories of low vision in the public school system. Before I start on my rant, I must state that not one, but TWO people groups are responsible for these serious issues. .

First of all, I will state the obvious: the school boards. School boards across many areas of Alabama are denying visually impaired students the services they need. These boards lack the ability to see the big picture. if a student is said to have low vision, then put 'em in the front row.....if only this was a magic cure. Low vision means that one lives with an eye condition glasses or contacts can not fully fix...so how can sitting in the front row aid this matter? Honestly, people. Also, school boards tend to over-examine report cards of the visually impaired. If a little girl with OCA is making A's and B's...why should she have special services? She is doing just as well as the other kids, right? WRONG. Certain school systems only want to provide services for students struggling to pass. Why can't students who strive to excel at the same rate as their peers benefit from these services, as well? Why must students (in certain areas) with visual impairment be forced to choose between academic excellence and accommodations? Why can't they have both?

The second group of people who could be benefitted by further education on the topic of vision impairment is the actual medical community. While it is obvious for optometrists and ophthalmologists to recognize visual impairment, what is NOT as easily recognizable is the ample amount of resources available and essential for their patients success in the real world. As a little kid, my doctors simply told my parents to take me home and treat me like a regular kid. My parents searched and searched for other opinions but just did not find any successful ones. It was only a matter of luck that we found the UAB Center for Low Vision Rehab right in our city's backyard. Many medical doctors focus solely on the medical, anatomical side of vision impairment...they do not look at the rehabilitation side. Structure does not need to be vs. function....these two assets need to be combined into one to ensure the most successful treatment of the patient from ALL ANGLES.

I could continue to rant and rave all afternoon, but I'll spare you. ;) Typically on this note, I would launch into my self-advocacy speech...but y'all know I have beaten that horse to death. In summation, EDUCATORS, and HEALTH CARE PROFFESSIONALS need to get educated and be adequate advocates for patients and their families. READY, SET, ADVOCATE!

driving...really???

While driving a car seems to be a right of passsage for most 16 year olds, kids with low vision have a different story.

Because I was consistantly told I would never have this opportunity because of my eye condition, I yearned for it even more. After visiting the UAB Center for Low Vision Rehab when I was 13, I was told that I, in fact, could drive a car! The process was extremely long and frustrating, including hours of occupational therapy and scary driving practice on major highways with handy bioptic glasses! My parents (and secretly my OT) were probably terrified whenever we set out for road practice. However, on May 9, 2009 (after only one faileed attempt!) I passed my drivers test and held a glorious paper license in my hand!!!!

Bioptic driving gave me the independence I thought I would never have! The process is a combo of a patients own vision and the use of a telescope for spotting distant objects, street signs, and traffic lights. Patients travel using their carrier lens 95% of the time, and the bioptic telescope is only quickly glanced into when details are necessary. While training, patients may be taught drills where they have to practice dipping in and out of the bioptic at a rapid pace.

Many factors come into play when determining if a visually impaired person (as I like to call 'em V.I.P.'s) are capable of becoming bioptic drivers.

Bioptic driving rules and laws vary in detail from state to state. Alabama's bioptic driving laws are as follows

Bioptic drivers in AL must:
1- have best-corrected vision of at least 20/200 in each eye
2- see at least 20/60 through no more than a 4X telescope
3- have at least 110 degrees of visual field horizontally and 80 degrees of visual field vertically
4- have adequate color vision to recognize traffic signals
5- receive training in the use of the bioptic
6- receive driving training including the use of the bioptic
7- be signed off on by a CDRS (certified driving rehabilitation specialist) that they have had adequate driving training and practice and are prepared to take the on-road examination
7- pass the same road test required of all AL drivers

WOAH! All these rules and regulations may seem intense- and they are......but they ensure the safety of bioptic drivers, for sure ( as well as the other drivers on the highway )!

For more info on the fabulousness and freedom of driving with a bioptic check out http://www.biopticdrivingusa.com. I'm off to bed! Feel free to comment with any questions you may have.

THANKS TO DR. DAWN DECARLO FOR HER HELP WITH THIS ENTRY!!!

traveling

So- I am sitting here at the UAB Center for Low Vision Rehab (on an awesome large print computer, btw) and was in a blogging mood. I was asking around the center on what people thought would be a good blog topic, and Dr. DeCarlo came up with a winner. How does one travel with Low Vision?

There are many ways those with Low Vision can be successful traveling via air. Although I am 17, I have often traveled by myself in airports and been just fine. (I am the kind of person who does not let my parents be my "eyes" I like to figure things out!). Low vision technology is getting more and more advanced everyday, and thanks to some great tools and tricks, traveling can be painless.

Luggage: Finding luggage can be a scary and overwhelming thing with low vision (similar to finding friends in a crowded cafeteria I mentioned in my previous post). To ease this process, I used to travel with a BRIGHT lime green suitcase. This way, I can spot it the second it pops out onto the carousel and not get lost in the sea of black and brown suitcases. However, if you do not own a bright colored suitcase there are plenty of other options. Try tying a bright ribbon or bright luggage tag to one of the handle of your suitcase. I am leaving for D.C. with a black suitcase, and I have adorned it with bright red and pink ribbons/luggage tags to help!

Looking for connecting flights on the arrival departure screens: This also has potential to be an anxiety-provoking process. However, any V.I.P. can conquer this challenge. Because I am extremely persistent about doing everything on my own- I use my monocular telescope in the airport. It helps by LEAPS AND BOUNDS! If you do not have a monocular, however; the airport attendants will be happy to help you find where you need to go, just ask! I know asking can seem quite overwhelming, but you have to advocate for yourself. Don't get caught in the frustration of not being able to read the screens, take action! BE YOUR OWN SELF ADVOCATE!

Well- I gotta bounce...off to D.C. to share the Songs for Sight mission with the suits on capitol hill!

PEACE

-alie b.

P.S.- say a prayer for all of the kids and young adults at the Songs for Sight support group IMPACT weekend today- it is going to be incredible, and I am sad to be missing it!

the tricks of the trade

Through Songs for Sight, I have had opportunities to meet other teens with low vision. As a matter of fact, when I was undergoing my bioptic training I met one of my greatest friends, Lauren. I KNOW I haven't blogged in ages, so I was brainstorming on a topic, and Lauren and I had one of those "lightbulb moments."

Both Lauren and I have grown up with our eye conditions, and have learned how to make adaptations in social situations to keep it classy. We thought some of our little tricks" to VIP (visually impaired persons) Survival in the Real World 101.

1. If we hear our name called in a school hallway, we shout HEY, and wave back in response....even if we may be waving and shouting in the wrong direction. Most likely, if you are far away from us, we have no clue who the heck you are, but heck, we are social butterflies!

2. We totally fake conversations until you get close enough for us to see who you are. (this may take AWHILE!)

3. We automatically wave when a passing car honks (just in case...)

4. At fast food establishments, or places where the menus written high up on the wall, we order the same thing as our friends to keep it cool. (Unless we have our monocular telescopes with us, then we whip 'em out and look like we are star-gazing, while in reality, we just want some variety in our meal...not what our friends ordered).

5. We enter an elevator on the opposite side as the buttons so that we can simply tell someone where we're headed instead of searching for the right button to press. (this has potential to be a lengthy process if we end up button-hunting).

6. We always go ahead of friends in at lunch so that we have to wait on them to pay instead of being left to find them in a crowded cafeteria. (Nothing is worse than being a blindie left to find people in a crowded area).

7. If it is dark outside, we always have a "guide human," for example...my friends know that when it is dark, I will grab their arm....it is not awkward or frightening to them anymore...it is a way of life.

8. When attending sporting events in large arenas such as football, baseball, occasionally basketball.....we are truly there for the social side of things. We love our team....but are clueless as of what is happening in the game. BUT we follow crowd cues and get REALLY into it by joining in in chants, standing up for touchdowns or baskets, yelling defense, or acting sad when our players make a mistake. *However, this has potential to be a tough situation...I have followed crowd cues for the wrong team before.....YIKES!)

That's all for today, kids. More soon, I promise!!!!!!!!!!!

Songs for Sight IMPACT GROUP at ASB

Whew! Home from 'Dega and quite inspired. What a day! I have the time and enthusiasm..so I am gonna give y'all the play-by-play.

So..Dr. D. picks me up and we head to ASB at around 10 A.M. Once we arrived we briefly set up in the Student Center and then grabbed a bite at one of the most classy eating establishments...Wendy's!!! At around noon the whole crew from the Center for Low Vision Rehab (CLVR) is back at ASB preparing for the families to arrive...but of course, I had to play n the playground before getting into serious mode.

From 12:30-1:00 kids and families FLOOD in! The CLVR only had around 15 confirmed teens coming out to ASB...but boy were we shocked! There were probably 30 or more VIP's (visually impaired persons..you'll learn my lingo soon...) and their families ecstatic about the day's activities. Lots of the ASB students were in attendance, so it was fun to have some kids that knew the place show all of us newbs around.

After an ice-breaker, the teens headed to the art building for a fun beading activity and all the parents got a tour of the ASB Independent Living Center...an incredible building/program ASB offers high school and college age kids. The Independent Living Center allows blind and visually impaired kids to experience what life is like on their own or partially on their own. Everyone learns how to keep a budget, pay bills, cook, and keep the house in order while balancing school and/or a job. The building is quite nice, equipped with a great kitchen, laundry rooms, study rooms with Closed-Circuit Televisions for homework and reading, and awesome apartment-like suites for the students. SUCH A COOL PLACE!

Another thing the parents learned about was being an advocate for their visually impaired kids in the school systems. SO MANY kids attend schools where they do not have the tools to succeed. Many do not even know what kinds of questions they need to be asking the administrators. Others do not know about the assistive technology that they can use to succeed in the classroom. In quite a few cases, administrators do not pay any attention to the visually impaired kid if they are making a C or higher. This just hurts my heart- I want to give these principals from such schools a little talkin' to. I was off with the teens during this time, but from what I heard...this session went really well and helped many families. Whew.

After the parentals learned how to help their kids get their scholastic needs met, the teens headed to the Independent Living Center for a support/focus group-like meeting. AND WE WERE LEARNING ABOUT HOW TO BE OUR OWN SELF ADVOCATES! This is a topic I am SO passionate about, because...as a high school chick living with low vision- i have learned that speaking up and addressing my needs is a must...not even an option. The Independent Living teachers moderated a focus group for us and I could tell so many of the teens were on fire about this topic! Almost everyone spoke up, and those that were used to hiding behind their visual impairment learned the skills to stand up for themselves in the crazy-hard school setting. Now, I am not saying all the shy ones had this "lightbulb" moment and all decided not to hide anymore...but I could just see a new kind of smile and hope in their faces!!! I left that meeting so inspired-so awesome.

After a breif popcorn break, we boarded the ASB bus and headed down to the Equestrian Center! We all got the chance to participate in leading a horse thru this obstacle course that was set up. HERE'S THE KICKER...the ponies had NO HALTER/BRIDAL/LEADROPE! We were each given a carrot, and had to lead the cute animals around barrels, over ramps, thru weaving cones, and finally over a big jump! It was challenging, but we had so much fun! The horses were so cute and put smiles on so many of our faces. I had a pony named Strawberry who had this funny hobby of licking...so needless to say, i got my fair share of horse kisses!!! LOVE THAT HORSE! I really think horses can make such a huge impact on people- they are the most theraputic animals. They can bring out so much of even the shyest person.

After horsin' around, our day ended with a hot dog supper and marshmallow roast...what a delicious end to a fabulous day! I think our second IMPACT group was even better than the first. I am on a kind of "high" right now- just being around so many kids that can really say they "get it" is an indescribably great feeling. Even if we are just hanging out- there's just this warm feeling of understanding that you cannot find with those who haven't "been there," ya know? NOT TO SAY that us V.I. kids do not LOVE those who encourage us every day...it's just a different kind of feeling when you are around other V.I. (visually impaired) kids!

I have GOT to sleep! Pictures to come soon!!!

PEACE OUT!

the woman with the vision...

OK- so my lack of blog-age is now over. I know where I am going with this ol' thing. I am going to use it as an outlet for me to explain everything eyes.....the good, the bad, and the blurry.

I'd love to give a little bio about my history as a blindie (legally blindie, that is), but right now, I am in a bit of a rush.

TODAY- is the quarterly meeting of Teens and Young Adults throughout AL living with Low Vision. These meetings are honestly some of the most exciting days for me and a lot of my fellow blindies. (OK- none of us are fully blind...but just go with me, OK?). In 15 short minutes, Dr. DeCarlo (my Low Vision specialist) is picking me up and we are road-trippin' to Talladega School for the Blind...one of the coolest places ever. My fellow blindies and I are in for a day filled with games, support/break-out groups, horse painting...yes WE ARE PAINTING A REAL, LIVE HORSE, and a campfire...and maybe some goalball??? (i will HAVE to post another entry about goalball). These meetings are so much fun because we get to finally be around other people who can say they understand...and they actually do!!!!! I have to run, but I will post pics and more later tonight!

If you wanna check out more about the fuel that makes these groups a reality check out www.songsforsight.org

PEACE AND BLESSINGS, PEACE AND BLESSINGS.