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Hidden Disability

By Leader Dog Client Jackie Panos

Perception. It’s all a matter of perception.

When you see a person in a wheelchair in a handicapped parking space you think nothing of it. That’s what the space is for, right? Well, what if you see a person like me, a person with a hidden disability?

I have had people yell at me that I don’t look handicapped. I have had them leave notes on the car complaining that we are taking up a space for a “legitimately” handicapped person. I have been scolded for using a handicapped restroom. These are just some examples of what happens when you live with a hidden disability.

I have people ask me if I am training my Leader Dog, Tulip. When I explain that she is my guide and we are a team, I am usually told that I don’t look blind. Really, what does blind look like?

Just for fun, I made myself a tee shirt that says “Wanna see how blind I am, Hand me your car keys.”

I have retinitis pigmentosa (RP) and glaucoma. I have approximately 8 degrees of perception. That’s about the equivalent of looking through two toilet paper holders. Try it for a minute or two and see if you can maneuver a parking lot. It isn’t easy.

I was diagnosed with RP about 28 years ago, so I have had a lot of practice using tricks that I have learned to get around.

When I am in a room, I touch a lot of things. I touch chairs, I touch people, I run into doorknobs and I shuffle my feet. I do anything that makes it easier for me to get through the room.

Before I got [Leader Dog] Tulip, when I walked in my neighborhood, I walked the same path. I could tell you where the manhole covers were, where the dips were in the pavement, where the drains were and if there were potholes. These are things that a sighted person never thinks twice about.

When you have something like RP, you do a lot of scanning. My eyes go back and forth and back and forth getting the largest picture of my surroundings as fast as possible. That works just fine if you are in an open area when your surroundings don’t change rapidly. It doesn’t work as well in a grocery store, an airport or a football game.

I bowl regularly in leagues. A bowling center is a very dangerous place for a visually impaired person. People don’t think twice about leaving their bowling equipment in the middle of the open area. I can scan an area one minute and the next minute fall over equipment that was left in the way. Other bowlers ask me, “How do you bowl if you can’t see?” I explain, “Watch the tricks that I use.” I put my hand on the chair in front of the scoring console. Then I put my hand on the console itself. Then I shuffle up to the lane until my foot hits the approach. I can see well enough to find my ball, so that’s easy. Then I look at the pins. I cannot see the mark on the lane and the pins at the same time, so my next step is to find my mark. You know the saying, Keep your eye on the prize? Well, that’s what I do. I concentrate on one mark on the lane and throw the ball. While I am doing this, my beautiful Leader Dog Tulip is lying under the chairs watching me.

Having RP is difficult at best. In October 2015, I went to Leader Dogs for the Blind and met my partner, Tulip. What a tremendous gift! She goes almost everywhere with me. I still use my tricks to get around when she is not at my side. I trust her to get me through when we are together. She finds the curb, our car, the restroom, my grandkids, the door and so much more. She walks me around puddles and obstructions. She has even stopped me from walking in front of a moving car! She knows that I have a hidden disability even if others can’t tell.


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About the author

Jackie Panos is married and has two sons and four grandchildren. She and her husband, Brian, have a sewing and embroidery business and live in Antioch, California. Jackie and Leader Dog Tulip have been a team since October 2015. Jackie’s motto is “For we walk by faith, not by sight.” 2 Corinthians 5:7.

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