Month: July 2015

Do you know how many times polygamy has cropped up in my conversations? It’s super easy for me to hazard a guess because I have NEVER had a conversation about polygamy. I don’t watch “Sister Wives”, and know very few Mormons (and those I do – do not practice polygamy). So why… WHY would I bring the word up in a chance encounter? *shaking my head at myself*

I’m a creature of habit. I go to the same stores and the same restaurants. I’m super scheduled and my electronic calendar is near and dear to my heart. I’m color-coded. I’m organized.

Therefore, it’s no surprise that I tend to run into the same people at the places I frequent. I have shopped at the same grocery store for almost four years. You tend to run into some of the same people when you frequent a store. When you go everyplace with a service dog, it makes you rather unforgettable, especially with children. It’s no surprise that I see some of the same children in stores who have been curious about and thrilled with Chloe as I shop.

It shouldn’t have surprised me that a little boy I have seen a half a dozen times or more stopped me to ask about my dog. My new partner is Milo, a black shepherd/lab whose appearance is completely different than that of Chloe. Here is a recent photo of both Chloe (retired) and Milo (current). The picture isn’t that great which reminds me I need to work on getting some more “3 musketeers” shots!

This little boy that I see occasionally (whose name I DO NOT know – which embarrasses me as he knows my service dog’s name), looked at me with big eyes and said, “Where is Chloe and WHO IS THAT?” (Ya gotta love kids)

I replied, “Oh, this is my new service dog, Milo. Chloe is retired now and is at home sleeping on the couch”.

He looked very solemn and said, “So she still lives with you?”

“Oh yes“, I said. “She will always live with me. It’s just that Milo is my new partner!”

He was quiet for a second or two and said, “So it’s like you are divorced and Milo is your new service dog?”

I was so astonished by the seemingly change in topic I stuttered out, “Well… ummm…. no, not at all. Chloe and I aren’t divorced. I guess it’s more like polygamy and both dogs live with me now!”

The little guy look TOTALLY CONFUSED, and I glanced up to see the HORRIFIED LOOK on his mother’s face. Ever want to just slap your hand over your mouth? I knew as soon as I said it that it was 1) totally inappropriate, 2) would take the mother all day to explain to her son, and 3) completely “off the wall”.

I made a mess of trying to back peddle (for people with balance disorders can do precious little BACKWARDS), and hurriedly made my way down the next aisle.

I stood in the international food section fussin’ at myself and nearly in tears for using such a poor analogy around a 6-year-old. I determined then and there I needed to PrAcTiCe PrAcTiCe PRACTICE what to say in response to “where’s Chloe and who is THIS?”

Part of Good Advocacy is Practiced Responses

Being a good advocate and representative of “whatever ails ya” means you have good responses when someone asks questions. I have learned the HARD WAY, that these responses need to be rehearsed. When you are taken by surprise by either well-meaning, curious people or rude, snarky trouble-makers, you want to have a measured, helpful reply so that you advocate in a positive and helpful manner. I have found that if I don’t have a “canned response”, I tend to match the tone and demeanor of the person asking. This means that sometimes I am pleasant and in “teacher mode”, with great responses that educate and advocate on behalf of the disability community. However, other times I’m waving my cane in a curmudgeon’s face and informing them in no-uncertain terms how horrible they are.

At Fidos For Freedom, Inc., (where I trained for now – TWO – service dogs), we practice how to respond when encountering access issues. If you have a service dog, it is not a matter of IF you have access issues, rather WHEN you have access issues. It is easy to get flustered. It is easy to get mad. It is easy to say the wrong thing. Practice makes it much easier to respond with something that will actually help you and others like yourself.

Doesn’t it Suck that Many of the Rude Ones are “Kin”?

What is even harder is when the person acting incredulous and skeptical is someone you know well or are even family. I’m lucky that I have a very supportive spouse and adult children. Even so… it is hard to love someone with a chronic condition. Once in awhile, my husband (or kids) do not filter what they are saying, because they, too, are sick and tired of Meniere’s disease. I’m 100% certain my husband has rehearsed responses to commiserate appropriately so that he doesn’t spend the night on the couch.

(Holding an ice pack on my cheek, or head), “I’m so tired of falling and staggering around! What I wouldn’t give for just one day of no vertigo!”

“It must suck, honey!” is the rehearsed response so that “Yeah, I’m getting tired of taking off work to take you to the E.R.” doesn’t slip out.

It can really hurt when someone who knows you better than others “opens their mouth and inserts foot”. I recommend that even support people practice and learn how to deliver sympathy and encouragement.

You Will Still Blow It

Even if you practice measured, helpful responses to personal questions, you are still going to blow it from time to time. A couple of Sundays ago I was ticked off at myself for not responding kindly to someone and was thinking, “Denise! You’ve had this diagnosis for 2 decades! Exactly WHEN is it gonna become HABIT?”

I sit during the worship service. It isn’t because I cannot stand. Folks are surprised when they learn that at work, I stay standing for very long periods of time. I actually MOVE very easily and with very little wobble. It’s standing still that is the problem. My world turns… counter-clockwise when I’m standing still. I love my church. They are very supportive of people who are differently-abled. We have a loop system in the auditorium for people with hearing loss. We have fully accessible bathrooms and classrooms. We have an elevator and a lift for people with mobility issues. In spite of this, I’m forced to sit during the worship service. My church puts the words to the songs on the wall using a projector. We have a beautiful stage and lights as well. The song lyrics are in a multi-media slide show with patterns, colors, movement and lights. Everything is color-coordinated and changes song to song. The freaky OCD person in me is in awe every Sunday. It’s gorgeous! But… I can’t stand. If I do, I’m fighting consciousness. It isn’t a problem, for I don’t mind sitting. I’m comfortable and SAFE. I learned that not everyone understands why I’m sitting, however.

An elderly person came up to me at the beginning of the service and asked me how to access the hearing loop in the auditorium. I removed my cochlear implant and hearing aid and demonstrated how to switch to t-coil. I get this question about once a month and I’m always glad to educate. I love the hearing loop and it has dramatically transformed church for me. I love answering questions to help others access this wonderful technology. So wasn’t I surprised by the encounter, but totally floored by the follow-up question:

“So why are you seated during the music? I’m way older than you and even I can stand!”

I don’t know if it was the environment, the timing, or the unexpectedness of the question, but can I tell you … I really took it wrong? I could FEEL the tension creep up my spine and I was mentally counting to ten and trying to diffuse the explosion about to spew out of my mouth. THIS ONE I hadn’t practiced for. I hadn’t run any scenarios through my head and out through my heart filter to answer a question like this appropriately. So I didn’t.

“Wow. That was really, really mean. We’re done,” I said. The person looked startled, then uncomfortable and walked away. I think the last action was because I’m certain my look was murderous. I mean… I was MAD. (I later apologized).

Folks are gonna take you by surprise once in awhile. You will hear an insensitive comment from someone you weren’t expecting it from and it will just shock you into silence (if you are lucky) or cause you to say something you regret. It is best to be prepared.

Ummm… WHY SHOULD I?

Maybe you are thinking that if people are going to be insensitive and inconsiderate, that “why should I temper what I say in response?”

Since we are on the subject… here are some “canned responses”:

1. You don’t want to sink to their level.

2. You need to be the mature one.

3. Kill ’em with kindness.

4. In the end, you advocate for all of us.

5. Honey attracts more bees than vinegar.

Well.

I happen to love vinegar. I mean… don’t get me started on pickles. There are few things I love more. Let’s be honest though… from someone who is differently-abled to someone who may also live with acquired disability, chronic illness, or invisible issues, “WHY should we be careful in our response?”

(sigh)

Because it’s the RIGHT thing to do. Sucks, don’t it? I can tell you from experience though that it is much better to answer correctly and watch someone else squirm, than to have to apologize for “going off” on someone. Go practice, my friends! You’ll be glad you did!

Denise Portis

© 2015 Personal Hearing Loss Journal