If you read Jen’s guest post yesterday, “Should I Tell My Workplace I’m Losing My Eyesight?”, then you are probably curious HOW she did it. Here’s her story!
Here is a play by play of how my ‘coming out’ went. At my current school, with my current boss, I started missing handshakes, people handing me things, I couldn’t keep up with looking at kid’s data in small print….and I couldn’t come up with any more excuses as to why my dad was driving me to work at age 30!
So I started by telling the team I work directly with. I was scared so I just texted them. I am a crier and knew I would just cry, then everyone would feel bad, and I would be a charity case. I said, “I have an eye disease that affects my peripheral vision and I felt it was safer to stop driving, and it’s a disease that gets worse. Today I am ok, tomorrow I may need support. I usually miss handshakes, etc…..”
When I was truly done driving, I had to tell my boss. I sent him a text and asked if I could talk to him about my vision the next day after school. Being the great boss he is, he didn’t want me to wait all day and I chatted with him early. Of course I didn’t get more than 2 words out without sobbing. He then proceeded to tell me he worked with a teacher with Macular Degeneration and knew how to enter her room by saying his name, knew the equipment she needed and so on. I told him that I should probably just quit since it’s going to get hard finding rides to school and it’s a progressive disease. That is when he said, “I am not going to let you quit. I am not going to give you an easier position (I was asking to be an aide); I am going to give you the equipment and support you need to stay. I can find you rides. End of story.” He also told me that telling my collegues was entirely up to me but that it was part of my story and I should want to share it.
I know not all bosses are as accepting and understanding, but I was very lucky. I wanted to quit. I calculated how much I could make as a teacher’s aid or with Social Security and was ready to tell him I wasn’t coming back.
I can’t even express in words the relief that came with telling my boss. Even if the other staff didn’t know, I knew that he did and since he was in charge of my evaluations, he needed to know.
The following day he had the tech people in to make my computer zoom in more, he asked around who lived near me for rides, he said I wouldn’t have to do outside recess duty because of UV rays, and he started enlarging everything he sent to me.
I know I may be lucky, but we need to have this response from an administrator be the norm, not the exception.
Now onto telling the rest of the staff. I was still getting annoying questions about “why is your dad picking you up?” “Didn’t you see that desk?” “Hellooo…I am handing this to you.” If you’re an RP’er, you understand these questions.
I knew I had to tell my staff. I poured over a long email that I wanted to send. I showed it to my visually impaired support group and while I got many supporters, I had many doubters that said if I sent it, it would be out and I could be moved, fired, etc… I didn’t sleep for a few days after those comments.
Deep in my heart, I knew I was someone who wanted my staff to know. I didn’t want to make a big deal (like my original 5 paragraph email) but I didn’t want to keep it simple, as this disease is not simple. I didn’t want to sweep it under the rug, because it’s progressive. The RP is not going to magically go away. This actually was the push I needed.
So instead I sent a Facebook message, very simple, to all staff I was comfortable with and instructed them to tell their team levels so that I wouldn’t have to do it.
And you know what…I got a bunch of “I am so sorry” responses, and then it turned in to, “What are you planning in math?” I loved that my staff wasn’t treating me like I had a disability. But now, in the teacher’s lounge, I can run into chairs and no one laughs, I can wait for my ride and no one questions why, I can complain about my computer not working and it gets fixed quickly.
I know this probably wasn’t the greatest, most efficient way to tell my colleagues and boss, but now it’s my story.
After going on and on, if I could offer any working RP’ers any advice, I would say DON’T QUIT. Don’t quit out of fear, don’t quit because you think you can’t do it, don’t quit so no one will find out.
Please, continue to work. You are important and you are intelligent and you are NOT any less of a person than a sighted one. Don’t let this disease win. Don’t let the darkness close in. Take your story into your own hands and light up the world.
View and share “DoubleVisionBlog Fight Song” Video on Facebook
Hi DoubleVisionBlog friends! I’ve been secretly working on this video for the past month as a surprise for Jenelle. Happy Blindness Awareness Month!
In honor of Blindness Awareness month this October, Joy shares her journey of shame, vulnerability and courage. With both humor and insight, Joy and her twin sister, Jenelle, share their stories of life with RP at doublevisionblog.com. Continue reading
I just finished reading To Kill A Mockingbird. Of course this was not my first time reading this modern classic, and it likely won’t be the last time I find myself engrossed in Harper Lee’s masterpiece. The story has not changed in the 18 years since I last read it. Yet, it somehow feels new to me. While Scout, Jim, and Dill feel like long-lost friends, they also seem different from how I remember them. While I recall feeling infuriated by the prejudice and injustices in the story, my understanding and analysis of these events has more depth than it did as a teenager. My own life experiences over the last two decades influence how I interpret this powerful novel. (Side note – feeling so damn old as I write this) Continue reading
My Aunt Debbie came over the other day and gave my girls the best present, a picture book entitled, What Does it Mean to Be Present?. It’s a beautiful book in a whimsical font on a topic that I haven’t seen many children’s books tackle. Lots of books on friendship and sharing and learning. But not many on “being”.
My daughters love this book, although I’m the one who can’t stop flipping through it, hoping it will rub off on me. My mind being the hamster wheel that it is, I really struggle with being fully present. Continue reading
Graduation from Guide Dogs for the Blind seems like eons ago, though the interactions with Roja’s amazing puppy raisers that day are still clearly etched in my mind. In fact, the entire day felt magical, from the after effects of the shock of my sisters surprising me to eating mouth-watering Indian food with friends who drove 14 hours in one day to celebrate with me and Roja.
“Um, Well, a smallish sized dog who is calm and has a drier mouth, maybe a yellow lab although color isn’t as important. Oh, and I want a dog who is super fast.”
I could tell Roja met my criteria from day 1, even though bonding has continued to be challenging. I’m now in my second week of training, and I still find myself feeling jealous of other students and their constantly playful, cuddling dogs. Yes, Roja, gives “hugs” with her whole body and loves playing “tug” and occasionally rests her soft head on my lap, but these signs of affection are definitely on her terms, intermittently, when she feels like it! She still moves away when I reach to pet her head, and I’m still learning what makes her tick. Continue reading
You know how some days can just fly by, to the point where you can’t even figure out what you did? And then there are those other days, those 24-hour periods that are so thick with events that it seems several months have passed overnight. I’ve experienced this during a weekend of silence at a trappist monastery, and on several short-term mission trips over the years, and today, at Guide Dogs for the Blind in San Rafael, CA, during my first day of training. Continue reading
stacked and held,
matted and framed
hanging on a hook above my bed.
Four hands. Mine is at the bottom, followed by my grandmother’s, my mother’s, and the tiny newborn hand of my eldest daughter. When a friend took the picture 8 years ago, I had no concept of the significance it would hold for me in future years when the physical hands would begin to perish.