Can You Be Arrested for That?

My favorite cane...
My favorite cane…

I have friends who are police officers. One, Carl, is actually chief of police for a district in our area. I see him most Sundays, and tomorrow I plan to ask him, “Can you be arrested for that?” I love his sense of humor and he and his wife, Pam, are two of my favorite people. Though I know he will be witty, I also know he will be straight with me. Anything that pertains to the law, he’s gonna be frank with me.

Maybe I should back up though, and tell you the story? <grin>

First of all, I’m really tired. I could list you dozens of citations that link differently-abled people with fatigue and insomnia. I’m usually good about listing all those for you, but honestly there are over 26,000 articles since 2012 alone. (Yes… I counted, or rather Google scholar did!). But I digress…

When I’m tired I have a little more trouble filtering what I say. I am much more apt to just say the first thing on my mind. I’m trying to live with the “pause – respond” method (thanks for that Toby Mac post, Helen), and being mindful of not saying the first thing that comes to mind really helps. When I am tired though, I’m less likely to turn that filter on.

I have a dog in hospice care at home (sweet, retired Chloe), and I am very likely involved in way… too… much. Finishing my dissertation, teaching four classes, volunteering at a number of places; the list goes on an on. Just color me tired. This tired woman, with turned-off filter, entered Giant grocery store on Thursday. Milo-bear (my current service dog from Fidos For Freedom, Inc.) was tired as well as we had just completed a long training at the county police academy and he had a fairly long demo (that he NAILED). I only needed to get a few things, and so encouraged Milo for a last push before heading home.

When I’m tired, I wobble. <ahem> Ok. I wobble all the time. However, I wobble MORE when I am tired! I had one of the smaller carts, Milo, cane, and enough time that I did not need to rush. This didn’t seem to matter. I was a mess. I even wobbled when I moved my field of vision from one shelf to another. Being late-deafened, I do not always hear things in a big, cavernous store with lots of tile and hard surfaces. I turned suddenly, and almost plowed into a man standing there shopping with one of those hand baskets. He threw up his hands and watched me wobble, screech (just a little), and grab for everything stationary in my vicinity.

No face plant (this time). I whooshed out a breath of air, and locked eyes with him and was getting ready to say, “Wow. That was close“. He beat me to airtime, however.

“Well you are more than a little pathetic today, aren’t you?” with a grin and twinkle in his eyes.

Now… I’m late-deafened. I often mishear things. My husband could tell you a thousand stories about WHAT I THOUGHT I HEARD. He’s one of the few voices I can hear on a telephone, and has never let me live it down when he called and said, “Dinner at six?” I misheard and thought he said, “Dinner and sex?” Maybe inside I was thinking, “yes, please“, mature adult that I was said, “Excuse me…?” Yeah. That one has been hard to live down.

So this smiling man with a twinkle in his eye standing there waiting for me to respond, may NOT have said, “Well you are more than a little pathetic today, aren’t you?” I had to give him the benefit of the doubt.

Maybe he said “phonetic“. Eh, likely not since I only screeched and had not said anything.

Maybe he said “poetic”. I could dream.

Maybe he said “prophetic“. Perhaps he sensed I was getting ready to assault him.

To clarify, I said, “Ummm, pathetic?”

“Yes”, he replied, “because you….” his voice cut off because at this point? I had my cane raised.

I poked him with it. HARD. I’M pathetic? You’re the pathetic piece of humanity standing there making snide comments about people who are a little different than you!” 

He rubbed his chest where I poked him, mumbled something that I’m not EVEN gonna pretend I heard well or understood, and wandered off. I sat there hyperventilating.

Milo-bear looked up at me like, “Are we done yet?” cool as a cucumber. Me? My cucumber was fried.

As I stood there wobbling and taking deep, calming breaths, I gave myself a pep talk that the guy likely just had a poor choice of words. He seemed friendly, nice even. I’m sure he didn’t mean the way it sounded… the way I took it. I even had the grace to ask God that if He brought me face-to-face with the man later in the store, I would apologize and try to explain how his comment made me feel. Thankfully, I did NOT run into him, because… well I wasn’t really wanting to apologize.

Yes. I should have just moved on, or perhaps even “only” blasted him with my “how pathetic are YOU” rebuttal. I need to keep my cane to myself. (Can you tell I am preaching to myself?) Who knows why he chose the words he did. I make poor choices all the time.

And I do mean ALL the time.

So perhaps I need to practice the “pause method” even more:

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Denise Portis

© 2016 Personal Hearing Loss Journal

 

Coping with Disability

Always such a privilege and joy to welcome guest writers to “Hearing Elmo”… especially those who have made an impact on my own life! Ruth’s blog can be found at: http://foxbuds.com/default.html  

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Succeeding at being functional, in spite of major disability, requires acceptance, attitude control, and accommodation. For approximately a half year, the extreme energy challenges that defines my disability took a vacation. I went from using a wheelchair to walking a mile independently. My wheelchair was actually forgotten, and it sat unused for several weeks. Feeling so energized, I worked to increase independence and exercise. Walking in a nature park; to and from the mailbox (long city block of considerable elevation grade); to and from study groups and services at church; and during shopping became frequent occurrences. Even bi-weekly lap swimming was added to the exercise mix. Restricted time limits on activity seemed to have dissolved. I came to expect unlimited energy and endurance.

Then, as quickly as it arrived, my disability “vacation” was over. Independence and exercise became challenging; fatigue and weakness unmerciful. Within a couple of hours after awakening, my day’s energy supply was gone. Being stubborn, I let failure define my course of action. Signs of exhaustion were ignored, functioning became extremely challenging and “mito crashes” began to occur frequently. During these mito crashes, I have trouble thinking and focusing; my speech sometimes slurs; word recall fails resulting in multiple unfinished sentences; there are unexpected falls when walking; muscles feel like they are made of wet cement; sitting up is painful as gravity alone is too heavy; my heart pounds and beats become irregular; and even breathing takes effort. My unwillingness to respect my body’s inability to produce needed energy, resulted in an unnecessarily low quality of life.

To find any degree of functionality, I first had to let go of stubbornness, pride and the perception that my disability would become a focus for those around me. It is uncomfortable when people express sympathy, or question my use of accommodations again, particularly my wheelchair. Yet, when I was finally forced to go back to using my wheelchair, which is the most visible accommodation that I use, people paid very little attention to it. Everyone around me was used to seeing me in a wheelchair, it just had been a while since they had seen it. As trivial as it may seem, it wasn’t much different than people failing to notice a haircut, or new glasses.

The hardest part of a disability is figuring out which accommodations give you the greatest amount of functionality. In this day and age of high technology, canine assistance, and ADA accommodations, it is amazing the level of functionality one can reach regardless of how severe the disability. Today, a person with hearing loss/deafness has so many choices that they can make to communicate at a distance, turn speech into text, or become aware of changes in their immediate environment; a person with vision impairment/blindness has choices that
they can use to replace print, locate navigational barriers, and obtain independent transportation; for a person with a mobility impairment there is considerable access to public and even private buildings, and accessible transportation; a person with a medical disability such as diabetes, epilepsy, or compromised respiration has options of implantable medication delivery, service animals that can predict impending medical crisis, and portable treatment equipment. It is true that barriers aren’t completely eliminated by accommodation, however it is a rare person that isn’t “barrier challenged” in some way, even without a specific disability diagnosis. Technology and access will slowly, but surely, improve over time.

Accommodating my disability this time around, was easier. Everything I need for my disability barriers is already in place; I just have to use it. Also having an extremely creative and supportive husband, who is so willing to do whatever is needed to help reach an acceptable quality of life, is a huge benefit as a disability affects everyone; it’s a family affair. All that was needed was for me to stop fighting against declining energy and to start working to make the best use of the limited energy I had left.

A person with disability can accept their personal limitations and find appropriate accommodations, yet not be successful due to attitude. Anger, bitterness, and continuous frustration over the limitations of public disability access is the fastest route to an attitude of entitlement. This is a personality disability; as limiting as any physical disability. It becomes a barrier to self-advocating. It prevents a person with disability from being part of the solution, by sharing what works, as well as what doesn’t work. An entitled personality is counterproductive to legislation, research, and development of new options, as frustration and anger slows the process down. An entitlement attitude keeps a person from finding or accepting alternate ways to bridge specific barriers.

My goal is to express gratitude for every barrier that is reduced or removed, and find my own solutions when I can. Yes, frustration gets the best of me sometimes, but as with everyone else, I am a work in process.

 

Boundaries & Brick Walls

brick

I’ve shared on “Hearing Elmo” before how important I think boundaries are to people with invisible illness, disability or chronic conditions. I believe we are already vulnerable. Not a WEAK sort of vulnerability, for we are actually very resilient in comparison to people who do not struggle with similar challenges. Dunn, Uswatte, and Elliott (2009) report that people with acquired conditions and challenges are often more resilient, happy, and have a positive sense of well-being. Yet, because we struggle to be all that we can be with new limitations, we can be vulnerable to others through criticism, disbelief, and lack of support. I believe that as people learn to cope and adjust to a “new normal”, boundaries–and sometimes BRICK WALLS–are imperative.

Boundaries

One of my favorite books that I often mention, is “Boundaries” by two of my favorite psychologists/writers, Cloud and Townsend. I highly recommend the book if you are seeking to establish healthy boundaries.

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I could go on and on about how MEAN PEOPLE SUCK, but this is more than that. We have all experienced interacting with people who are toxic, negative, and critical. These interactions inhibit our growth and our ability to cope effectively and successfully with challenges–that to us are not CHOICES, rather realities of living in our bodies. Boundaries can, and should be, set for these people. A boundary limits our interaction with someone that we have discovered hinders our growth or influence. Boundaries are not permanent. People can re-establish a good relationship. I always cringe when I hear people say, “Once you’ve lost my trust, you’ve lost it forever“.

I am not who I was. I hope that my life reflects a “work in progress”. I want to be a person who continues to grow each year that I live. I believe I can set a boundary for a critical and negative person, and my faith can be restored in this person at a later date. Life changes people, folks! The boundary keeps me at a safe distance, however, for whatever period of time is needed by that person to change or grow themselves.

Yes.

It hurts when you have to set up a boundary with a family member or someone who was once a close friend. Even these boundaries are necessary at times. Self-care is not only important, it is necessary. If we do not do what we must (by setting up a boundary for an unsafe person), we cannot thrive or make a difference in the life of another. Boundaries limit what we offer to these people. You may choose to not share specific things about yourself with them. You may limit how often you interact. These boundaries protect you and allow you to continue to live victoriously. They allow you to be the champion… the WARRIOR, that you are!

However, there are times when boundaries become more than safe zones for us. Boundaries can turn into permanent and impenetrable fixtures to completely cut us off from unsafe people. The boundaries become brick walls.

Brick Walls

When do you know that a boundary needs to be replaced with a brick wall? I believe…

… you will know.

The person has habitually harmed you. You have provided an avenue for reconciliation and  they have repeatedly taken advantage and continue to injure you. When this happens, it’s time for a brick wall, my friend! When and if you choose to permanently block someone from your life, it is important to remember:

  1. You are not responsible for their behavior.
  2. You are not selfish, nor stubborn.
  3. Your applied masonry skills mean you can continue making a difference in the life of others.

How do you build a brick wall and permanently dismantle a relationship? I have had to do this. It wasn’t easy. It hurts when it is someone who once mattered a great deal. However, self-preservation may mean you need to build that wall. Here are some things that worked for me:

  1. Block them from all social media outlets.
  2. Block their phone number.
  3. Block their email address.
  4. If you can, eliminate all face-to-face interactions.
  5. Don’t feel guilty. If you do, you are weakening that brick wall. You were not the toxin, they were.
  6. Avoid other’s efforts of reuniting you to this person. Well-intentioned people often do not know the whole story.
  7. If you must grieve the loss of this person, allow yourself to do so.

Because this is something I once did, I feel like I should give a warning as well. Don’t build walls because you are hurt and hunker down into protective mode. This is self-imposed isolation, not deliberate wall-building to keep out those who are toxic to you.

A perk I’ve discovered of brick walls? It can force a change of direction. You never know “who” or “what” awaits you as you step in the opposite direction.

Denise Portis

© 2016 Personal Hearing Loss Journal

Dunn, D., Uswatte, G., and Elliott, T. (2009). Happiness, resilience, and positive growth following physical disability: Issues for understanding, research, and therapeutic intervention. Retrieved September 5, 2016, from https://www.researchgate.net/profile/Timothy_Elliott/publication/232514358_Happiness_resilience_and_positive_growth_following_physical_disability_Issues_for_understanding_research_and_therapeutic_intervention/links/09e4150a3327348871000000.pdf

More Vulnerable than I Thought – Stronger than I Imagined

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Earlier this summer my parents came to visit. For some reason, I always have a “project” for my Dad. For some reason, he never seems to mind. This time, he built and secured a lattice porch screen to give us some privacy between our deck and the neighbor’s house. We have a huge yard, but it is long and narrow–not very wide. One of the first things my Mom and I did was plant Morning Glories. This beautiful vine has done so well this summer. It’s a childhood “feel good” memory for me, so I love greeting the blooms each morning.

I think one of the things I love about Morning Glories, is that they are (ahem) … GLORIOUS in the morning.

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I love coming out in the morning, in the quiet and cool AM environment, and having these cheerful flowers greet me.

VULNERABLE

I think one of the most difficult things about chronic illness and being differently-abled, is a sometimes, overwhelming feeling of vulnerability. I don’t know about YOU, but I hate feeling vulnerable. I’m not talking about the healthy kind of vulnerability where one learns to open one’s heart to another. I’m not talking about learning to be transparent and (at times) brutally honest (or, receptive of someone being brutally honest to YOU). I’m talking about the kind of vulnerability where you know you are at risk – in trouble – and floundering.

I am feeling pretty vulnerable. I hate having an illness that is progressive. Even though I work my butt off trying to be independent and capable, each year it seems to be more difficult to “get my glory on“. I love mornings. I’m a (disgustingly) cheerful early-bird person; perhaps, part of the reason I have been able to greet the Morning Glories with a smile on my face. While standing and watching the dogs race around the yard and work on waking themselves up, I often find myself reflecting, even praying at times. Lately, I think I’m perpetuating my feelings of vulnerability. During my AM REFLECTIONS, I have been thinking about where I was physically a decade ago, five years ago… and even last year. Ten years ago, when I was only 40-years-old, did I know that I would navigate with a service dog and cane? Did I understand that I would only be able to hear when I had my cochlear implant connected? Did I know that I would have a pronounced limp from numerous twisted ankles as the result of falls? Did I know that on the evening of August 23rd, 2016, I would have numerous bouts of vertigo, nystagmus, and several panic attacks between bedtime and when my alarm clock kissed me awake? (The benefit of having a service dog and retired hearing dog as your alarm clock). Nope. I didn’t know this would be my life. It makes me feel vulnerable (and depressed).

STRENGTH

I am my own cheerleader.

Don’t get me wrong. When I need encouragement, I know how to reach out and ask for help. This practice being, a different and healthy kind of vulnerability. If you are a person with chronic illness, invisible or visible disabilities, and special challenges that make life rather difficult at times, you may have no problem telling someone “I’m done“. I do have problems with that. I find it easier to say, “I’m struggling“, and less easy to admit “I’m done“.

I think part of it is because I don’t want to disappoint anyone. Even at Hearing Elmo, I try to keep things positive and encouraging. As a co-advisor of a student group for people who are differently-abled, I want to model confidence and a “can do” attitude. But honestly? Sometimes, I’m just done. This morning (after the night I had), I could not “get my glory on” in spite of my special flowers greeting me the same as usual in a beautiful late summer, sun-rise welcome. I found myself struggling. I found myself feeling vulnerable, depressed, and on the verge of giving up.

When I cheerlead for myself, I tend to default to a number of cheers:

  1. There are other people worse off than I am. Yet, they are productive individuals who find purpose in life.
  2. I have support from people who care about me, who encourage me to utilize everything I can to be independent.
  3. I am making a difference. It doesn’t matter if my niche in this big world is a tiny pocket of influence. If I can help make a difference in one, it is still making a difference. 
  4. All the things I enjoy, and people I love, are opportunities and relationships I would not have if I didn’t have the challenges I have.
  5. I know, without a doubt, that I am a better, stronger woman because I have Meniere’s disease and am late-deafened. Calhoun and Tedeschi (2014) explain it best: “The encounter with a major life challenge can also include an increased sense that one has been tested, weighed in the balance, and found to be a person who has survived the worst, suggesting that one is indeed quite strong” (p. 5). 
  6. Life can be difficult. It’s a good thing I’m STRONG.

Ultimately, the way I “keep on – keeping on” is recognizing that this is hard, but I CAN do this. I’m going to have bad days. I’m going to need help. I’m going to fail, mess up, SCREW up, and want to GIVE UP. When I am weak and vulnerable, I am also strong.

I’m also learning that it is ok to say, “I’m done“. (Ouch. That hurts to even type it!) However, I recognize that this admission… this vulnerability, also means I’m strong. Stronger than I ever imagined.

Denise Portis

©2016 Personal Hearing Loss Journal

Calhoun, L. G. & Tedeschi, R. G. (2014). Handbook of posttraumatic growth: Research and practice. New York: Psychology Press.

When Rules Don’t Apply to YOU

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*tongue in cheek*  It ROCKS when a guest writer chooses to post here at Hearing Elmo. I welcome guest writers and if you ever feel the “itch” to write, email me at denise.portis@gmail.com  Today’s post comes from Milo-bear, my second service dog.  Let’s welcome newbie writer, Milo, to the blogosphere and trust that what he has to say can be echoed by many service dog teams.

I have working clothes. Don’t laugh… you have them too. I pretty much have a great time side-by-side with my human partner 24/7. However, when my working clothes go on — my vest — I am having fun WORKING. Oh… I also happen to be GQ handsome.

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Denise has had a lot of people come up to me that she does not know asking to pet me. When we know the person already, Denise actually likes for us all to say hello because I can be kinda aloof and she doesn’t really want that being a teacher and all. She draws the line at sniffing butts though so I have learned to lean, wag, and keep my nose to myself.

Sometimes though, a total stranger comes up and starts talking to me. One day last week at the craft store, someone came up and leaned down to talk to me totally ignoring Denise. If they had been paying attention, they would have seen Denise desperately gripping the shelves and trying to keep from wobbling as this person invaded our space. The stranger said, “Oh I just love working dogs. I have always wanted to see if that was something I could do… train working dogs. Oh my, you have a very cool vest pretty boy. Don’t you look handsome!?” Now – mind you – I couldn’t argue with the handsome part, but this gal was missing two important clues:

  1. My vest says “Do not Pet” and “Do Not Distract
  2. I neither speak NOR interact with strangers. They are STRANGE.

I was so proud of Denise! She hates to make people feel badly, and at times she puts herself at risk by not standing up for herself. Perhaps it was because she was wobbling SO MUCH, that she immediately chimed in on the tail end of this stranger’s gushing intrusion to say, “Yes, isn’t it a nice vest? Complete with patches asking you not to pet or distract him”. 

I would have high5-paw’d Denise, but hey… she was wobbling enough and I didn’t want her to do a face plant. The stranger kind of sputtered and backed away. Then with a huff, she turned on her heel and walked away. I yawned really big trying to relax and Denise scratched me behind the ears and talked quietly to me. I didn’t understand everything she said, but it was something along the lines of just wanting to shop without the drama.

Denise doesn’t partner with me to create drama. I’m her helper to reduce the drama. She wobbles less when I’m by her side. If she drops something I get it for her. And ya know something? My gal pal drops things A LOT. I’m ok with that because – heck. I get paid to just pick it up and give it back to her. I have the world’s best job. I do things that are super easy for me and get treats and affection for my efforts! If Denise  reaches for dropped items, she tends to end up on her butt – which I have to tell you is OK with me too because I can easily kiss her whole face when she is eye-level.

When I know someone, the whole scenario is different. For one thing, I don’t stiffen up. I usually start to wag like crazy. I just can’t help it. When I see a friend my tail just wags and wags. Denise releases the tension some on my leash and I can say a quick hello. When it is a stranger though, I’m nervous and she is nervous. I’m thinking, “WHY are they talking to me? Who IS this strange person staring at me and in my space?”

A couple of weeks ago, Denise and I had a break after a class. This was before the pant-’til-you-drop heat hit our area. We were sitting outside on a bench enjoying the sunshine. I was double-daring a butterfly to come a little closer, and Denise was checking her email on her phone. Some students came pushing and shoving their way around the corner and then stood right in front of us. Denise was a little startled, but continued to sit and check her email. I was SERIOUSLY uptight. I mean… they chased off my butterfly! Boy was I peeved. And then you know what they did? They all had their phones out and were jostling each other and pointing their phones at us. Here I was surrounding by all these noisy and rowdy strangers, and all of them were pointing their phones at us. My hair stood up and I made sure Denise could feel my tension all the way up through the leash. She looked down at me, looked up at the students and said, “Ummm. Let me guess. Pokemon GO?” They completely ignored her. Thank goodness they didn’t hang around long. I was starting to get really antsy. After they left Denise reached down to scratch my ears again.

“People can be clueless sometimes, Milo. Don’t let them bother you. I would have moved but DARN IT. We were here FIRST”. 

I sighed really loud and pouted about not getting that butterfly. I tell ya what, I just don’t get people sometimes. I worked my butt off all morning, showing Denise where sounds were coming from, picking up things she dropped, and standing behind her while she wobbled at the board. She calls this command “WRAP”. I just call it smart, because it only takes my touching her on the back of the legs to keep her from wobbling so much. Anyway, I worked my tail off this particular morning. Well ahem, not literally of course. I just wanted to rest a bit – and yeah ok. I wanted to eat that butterfly, too. Instead, rude strangers caused me to get my hackles up. SMH.

Some people don’t think the rules apply to them. It’s just common decency to not invade someone’s space, make a lot of noise, and point your phone at them. That’s a rule even dogs understand. When my pack mates put their butt in the air and wag their tails at me, I will come over and say hello. If they are laying still and have their face pointed away from me though, I figure they are staring down a butterfly. This body language and lack of eye contact means that I know to stay clear. Especially my older sister, Chloe. That girl can be Grrr-ummmm-py! She still does the kitchen timer alert for Denise, and let me tell ya… you better get out of that girl’s way when the kitchen timer goes off. I watch her body language. I know when Tyco wants to play and I also know when his legs hurt and he wants me to leave him alone. People need to just pay attention to my body language when I’m trying to help Denise. Better yet, they need to know the patches on my vest are rules to be followed. Not because I’m snooty. I have a job to do and can’t do it if you come into my space and act like we are best buds.

I know what strangers are. When Denise’s classes start, everyone is a stranger. However, the students that sit in the front are students I start to recognize. After a few weeks of class, sometimes when Denise is talking I will lean over and put my head on a student’s desk and make goo-goo eyes at them. They aren’t a stranger anymore. At this point though, WE KNOW EACH OTHER. They may laugh and tell me I’m a silly boy, but it doesn’t distract me because I know them. Even knowing me they don’t take advantage. They know the rules. Towards the end of the semester, Denise will take off my vest right after class. OH BOY! I get to say hello to all the front-row students. Naked=Right to Visit. I take advantage of any naked time I can get.

So I guess what I am trying to say is that I know seeing me where you shop, eat, or work grabs your attention. I thought I gathered folk’s attention because I am so incredibly handsome. I’m sure that’s part of it, but it is also because some people just love dogs. Let me tell you a secret though. One of the things I’m most proud of is that Denise shops, eats out, and works because I make that possible. She told me that before Chloe she was almost house-bound. She was scared to do anything because people would jostle her when she didn’t hear them and knock her down. After Fidos For Freedom, Inc., came into her life — first with Chloe and now with me — she went back to school, went back to work, and shops alone. Listen up though… if you are a stranger and invade our space and make a grab for me? Well Denise goes back to being in danger of falling really fast. That makes her nervous again. If we know you, it’s different. Think about it this way: Would you go up to a stranger and only talk to their kiddo, and reach out to touch them without asking? Sometimes I sigh and wish I could say, “AHEM. The eyes that matter are up HERE“, and swing to point at Denise’s face. Denise said, “eyes up here” is kind of kinky and doesn’t mean what I think it means. So I haven’t tried to correct anyone with that yet.

Rules are rules. If you see a service dog with a partner in public, it may be obvious at first glance why that dog is with that person. A lot of times, though, it may not be obvious at all. Just trust that a working dog is WORKING. If you do not know them, let them shop. If you do not know them, let them eat in peace. If you do not know them, let them work and do their job. Service dogs are like a piece of adaptive equipment. You wouldn’t pet Denise’s cane would you?

A specific exception for just Denise, is that if we know you it’s great to say hello to me and scratch my ears for a minute. Denise wants me to know that there are friends in the world and to recognize them. If I don’t know you though, how about you just let me do my job? That way Denise is safe and I can focus on why I am with her. If you have to take a picture of me, cuz seriously I’m drool-worthy, just be sly about it and don’t make a scene.

Milo-bear Portis

Successor dog extraordinaire

 

 

Let Sleeping Dogs Lie

My sweet Sheprador
My sweet Sheprador

In my opinion, one of the more frustrating truths about positive advocacy is the need for repetition. I understand that because my challenges and disabilities are a part of my life, adapting, coping, and sometimes “making do” are a natural part of each and every day. I also understand that because many people with whom I interact do NOT live with hearing loss and balance issues, what is second nature for ME never crosses their minds. The trick… and something I have been struggling with, is how often do I have to ask for accommodations? How often do I repeat the same ol’ request so that I can simply interact with others equally?

The above photo is of my current service dog, Milo, from Fidos For Freedom, Inc. Milo is a young Sheprador (German Shepherd/Laborador Retriever mix) who rarely sleeps. When he does, he sure is cute. ‘Course I’m a tad bit prejudiced being Milo’s partner. The phrase, however, “Let Sleeping Dogs Lie” originates from a proverb that means to leave something alone if it is going to cause trouble, or dredge up old arguments.

However, when we strive to promote positive advocacy and request accommodations (that were asked for before and are still not a habit for those providing the service, workshop, or seminar), when do we just “leave it alone”? One of my longtime requests is that speakers use the microphone, and repeat questions asked from the audience INTO THE MICROPHONE. Yet, time after time speakers say, “Oh I don’t think I am going to use the mic. My voice carries…” or, “I’m just going to put the microphone over here… you can all hear me, correct?” I’ve even had speakers have everyone in the audience introduce themselves and give some information about their background WITHOUT A MICROPHONE in sight!

I wave like a crazy person and “shake my head no” when speakers say this, and yet time after time I sit in meetings like this with no one using the microphone. At the end of conferences I fill out surveys about my conference experience and have tried to relay how important the microphone is to me. I’m to the point that I may stand up and create a mini-scene, asking them to use the microphone. As a person with hearing loss, in a large, cavernous room, I go from hearing 95% with microphone in use, to about 20% when it is not. Any idea how hard it is to get anything out of a meeting if you are only getting 20%?

I don’t even go the extra mile and request CART. It’s expensive. In spite of people with normal hearing asking for a copy of the transcript as well and my knowing it helps more than just ME, I don’t make formal requests for CART as a simpler solution WILL actually meet my needs. Entering a new school year with loads of meetings on my calendar already, I am to the point of “letting sleeping dogs lie”.

The only problem is, it isn’t in my nature to roll over and give up. So wake up, DOG.

Denise Portis

© 2016 Personal Hearing Loss Journal

 

 

Feeling Like a Weirdo

Always thrilled to have a guest writer here at Hearing Elmo. If you live with chronic illness or a visible/invisible disability and love to write, I invite you to post in this venue to share your story.

I don’t remember when Deb and I first met. I feel like I’ve known her “forever”.  We just “clicked” early on and she is now one of my dearest friends. Deb has taught me so much just by example. We have a lot in common, but are also different in many fun ways. C.S. Lewis said, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one!” I’m thrilled to share a post from her and hope you will check out her photography site as well. Visions of Song

apropos of nothing

I was a little bit grumpy when I went into work this morning. Just your ordinary kind of grumpy, at least I think that’s what it was at the time. We had a staff meeting scheduled for 9:30. I was walking down a hall at 9, about to get some water from the kitchen, when I saw a teammate who said “we’re meeting in the first floor conference room”. Thinking I’d lost track of time, I said, doesn’t it start at 9:30? He shrugged and said “sometimes it’s different”. Later, I found out what he meant, but at that moment I was walking in the wrong direction, sans water, notepad, calendar, and orientation. I rushed to grab my things and when I walked in, everyone was seated. Now, let me mention that I am relatively new on this job, and the folks are really nice and teach me a lot about what goes on there. Today, though, I was already grumpy, and now I was LATE (and still didn’t have anything to drink because I’d forgotten to fill up in my haste). I sat at a place around the large, squared set up of tables, strategic for what I knew would be best for me, able to see the faces of everyone should I have trouble hearing anyone. My supervisor said “sit where there are papers” meaning the agenda and other materials. Well, the seats available were not strategic for me, and I was already feeling grumpy and it was obvious that I was late and slightly holding things up. I said “everyone forgets that I am hard of hearing and need to sit where I can best follow what’s going on. So, if it’s alright by you, I’m just going to get these papers and sit over here”, walking to where I intended to sit and feeling quite determined about that fact. Meanwhile, supervisor gestured as if to say “come sit by me”. I did not want to explain why that would not be ideal, and she was trying to be helpful, but it wasn’t helpful, and by the way I was feeling more and more like a grump at this point. Further, I was feeling like a weirdo. An oddball. Someone who needs something special. I deeply dislike standing out, or seeming like I need something unusual. Everyone else was sitting wherever they wanted to, and I had to have this mini-scene because, as I stated rather unprofessionally, no one seems to remember that I’m deaf and use cochlear implants to hear. At the risk of sounding like I’m bragging, among cochlear implant users, I am a super high performer. I am pleased and even thrilled by what I am able to do hearing-wise. Then I get in a typical work situation, and suddenly: I’m a weirdo. It does not help that I am also something of an introvert, friendly, social, smart, funny, but I need tons of time to process and recharge. I really don’t think it has much to do with my hearing, either, as I had relatively normal hearing for the first 10, 12 years of life but was always this way. So I seem a little odd compared to the norm in terms of social interaction to begin with, and then there’s the hearing loss and the special needs.

Grumble.

You know? Most of the time, really and truly most of the time, I am OK with being deaf and hearing again with cochlear implants. I am glad to educate and inform and certainly to advocate for myself (although I have work to do in this regard, and tend to be much better at advocating for others). Today, I wasn’t in the mood. I finally got something to drink, and good thing, because I ended up sitting through three meetings before the day was done.

beverage at Davids Diner

It did give me time to forgive myself, for feeling badly, for not feeling comfortable about asking for what I needed. I was also glad that I have become that person who knows what she needs and while the sending of the message might be a challenge at times, I can say no, I don’t need that, I need another thing, and know how to pursue what enables me to perform and participate at work. I walked through my apartment door at the end of the day thinking I either needed a drink (the after-five kind), or a good cry. I remembered I had some delicious food to make for supper, and having eaten and cleaned up, I sat and wrote this down. I don’t feel so grumpy anymore.

Deborah is a bilateral cochlear implant recipient. She experienced familial progressive hearing loss, which presented at age 10. Her first ear was implanted in 2005, the second ear in 2008. A native New Yorker, she presently resides in the central Piedmont of North Carolina. She is involved with HLA-NC, and is passionate about issues related to substance abuse, addiction, and mental health, serving as coalition coordinator for Project Lazarus of Randolph. In her spare time she enjoys traveling as much as possible, and can frequently be found wandering the backroads and practicing nature photography in the nearby Uwharrie National Forest.