Americans with Disabilities Act

When You Want to Smack ‘Em With Your Cane

Published on May 24, 2017May 24, 2017 by hearingelmo2 Comments

handicapped-restroom

When you are differently-abled, going to the bathroom can be a pain in the… well?

… BUTT.

If you are partnered with a service dog, it can make the process even trickier until you get a nice routine down. Likely, one of the biggest issues for all of us is ACCESS.

In the United States, public restrooms are required to be handicap accessible. For restrooms that have multiple stalls, the number of required handicap accessible stalls depends on the total number of stalls in that location. All must have at least one, according to the ADA.

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Milo, my current service dog from Fidos For Freedom, Inc., is a very big boy. A German sheprador, Milo is 80 lbs. of helpful tail wags. Between my wobbles, cane, and big boy helper, I require some room to use the bathroom safely. I will be honest with you, I use to get aggravated if waiting for a handicap stall, only for the person to exit and they looked perfectly fine to ME.

A student leader in the Anne Arundel Community College‘s SODA club (Students Out to Destroy Assumptions), reminded me during a particular scathing belly-ache rant, that not all disabilities are visible. I think it is great when student leaders can challenge long-time advocates, don’t you? Kudos.

So yesterday, I stopped in at the women’s bathroom prior to my Diversity Institute workshop, to find the bathroom empty with the exception of…

… yeah, you guessed it,

the handicap stall. I stood there (with legs crossed) and waited for the person to exit. I even took out my phone to appear less desperate. Milo’s ears perked up (indicating a toilet was being flushed), and I stepped to the side about a foot so that the person could exit safely. I didn’t bat an eye when the person who came out “appeared perfectly abled”. It is no longer my default judgment to assume the person didn’t need the larger size, rails, and access to the stall.

I was surprised, then, when the young woman, said, “Oh gosh. Sorry, I use this so I have more room for my book bag and didn’t think someone who actually needed it would be waiting!”

I’m pretty sure my mouth dropped open.

I counted to ten and purposefully and deliberately maintained the position of my cane on the floor where it belonged, and said, “Yeah, there’s always a chance someone will need it who is waiting for the accessible stall!” I smiled (honestly! I did!) and scooted around her with Milo, closed and locked the door.

I was so mad I couldn’t pee. (Just bein’ honest folks!)

I have never had proof staring me in the face before. 24 hours later I am still processing it. My new default is a good one though. We cannot judge who uses a handicap stall even if there are other stalls empty.

Before you assume, remember:

The handicap stall might be the only one empty when they came into the bathroom.
Perhaps the other toilets are “nasty” or out of order.
Perhaps it is a parent with a small child to assist.
The person may have a genuine need for the stall. Some common invisible disabilities include: A) Anxiety disorders (especially phobias such as mysophobia, claustrophobia, and OCD)
B) Early stages of progressive diseases (MS, Rheumatoid arthritis, Parkinson’s, cancer, etc.)

C) Digestive disorders (IBS, Colitis, etc.)

D) Pain disorders (Fibromyalgia, Mitochondrial, and joint diseases)

E) Chronic fatigue and related illnesses

F) Age related conditions

So… put the cane down; no clobbering innocent folks relieving their own needs.

~~BUTT~~… But —

For those of you who use the handicap stall even when there are others available and you prefer “more space”,

well… shame on you.

That wasn’t nearly as satisfying as busting someone up ‘side the head. I remind myself that I can be an unfeeling jerk and clueless twit about things I don’t understand. If we all learn to put ourselves in someone else’s shoes, the world would be more respectful and kind.

Denise Portis

Who Has a Right to Make Our Choices?

Published on February 25, 2014 by hearingelmo3 Comments

Hearing Elmo would like to once again welcome Ruth Fox as guest writer this week. Ruth is a passionate disability advocate and also a photographer! I have enjoyed getting to know her even better through her nature photographs. Recently, Ruth reached out to me to give me some much needed information on mobility issues. If you would like to communicate with Ruth you can look her up on Facebook or email me at denise.portis@gmail.com and I will forward your email to her. Ruth asks some important questions about access issues:

Who has a right to make our choices?

My husband and I are “young” seniors, who have dealt with multiple disabilities our entire lives. Some of these disabilities are becoming more visible as we age. Both of us have worked hard to reduce our challenges. This means that we have had to address our barriers regardless of what other people would like to see us do. We embrace the freedom that mobility and technology accommodations provides us. Some of our disabilities require alterations to daily living routines and traditional ways of eating.

We enjoy sharing information with other people, so the frequent question “why?” provides opportunity to talk, in general terms, about hearing loss, cochlear implants, Asperger’s syndrome, food sensitivities, and Mitochondrial Disease. However it isn’t always easy, because disabilities can be extremely variable. They fluctuate in response energy reserves, weather, degree of sensory stimulation, health, and mood and basically everything physical, mental and environmental. People tend to understand “total” easier than “partial”. Explaining hard of hearing, partially sighted, food sensitivity, weakness and discomfort is considerably more complicated than explaining deaf, blind, food allergies, paralysis or pain. The greater detail required to explain “why?” the more awkward and embarrassing it becomes.

Now the question: How do we make our choices for personal disability accommodation? Do we consider what works best for us, or do we deny what is best for us because of the comfort level of peers, coworkers, family members, acquaintances, professional service providers and society in general?

It is a work in process, but my husband and I have found what allows us to be comfortable and productive. It isn’t always easy, as we march to a different drummer, but we live life to its fullest.

Ruth Ilean Fox

—————

Denise Portis, Hearing Elmo

Advocacy ≠ It’s All About Me

Published on February 17, 2014 by hearingelmo6 Comments

Yup. Like most of the Atlantic coastline, we’ve been getting the snow. Enough snow that warranted a “whoops Denise” accident with two emergency room visits to follow. But hey… that’s OLD NEWS now so I digress…

Last week, most schools closed both Thursday and Friday. Since my entire family works at a school, that meant we were all home.

Together.

In the same house.

By Friday afternoon I was BEGGING my husband to get me down the hill and out of the neighborhood. We unburied the car, unblocked our space that the snow crews had “accidentally” blocked off with huge mounds of snow, warmed the car up for ten minutes, and escaped.

It was also Valentine’s Day. My husband knows better than to get me chocolate or flowers. I love cards. I love to eat out. (Something to do with not having to fix it or clean it up?) So we went on a “date”. I was thrilled. Not only had I escaped the house but now I was going out to eat a late lunch for Valentine’s Day.

I’ll admit it. I wasn’t thinking about “pottying my service dog” at home where I had cleared out a space in the grass so the dogs could easily go. My mind was on one thing. Escape. So by the time we arrived at the restaurant, it took seconds for me to realize my mistake. I had forgotten that snow plows pile up the snow on the mulch, grassy areas, or right on the other side of the sidewalks so that the walkway is clear. You can only get to the grass if you climb up a huge man-made snow drift! We got out of the car and my husband looked around.

“Gosh. Can you believe it? What are people with service dogs suppose to do?” he said with heartfelt exasperation.

I looked at him quizzically for a second or two before responding. “Ummm. It’s not THEIR fault that I didn’t take care of pottying MY service dog before I left home”.

I was so proud of myself. I practically beamed from the inside out. There may have been a faint glow coming out of my ears and nostrils. Yup. I’m pretty sure I was beaming.

My Problem Isn’t THEIR Problem

You see? The only person who is responsible for making sure my service dog’s needs are taken care of are ME. There was a time when I advocated very poorly. Do you know I never once improved my situation by poorly advocating? Poor advocacy is accomplished when your attitude is wrong. These wrong attitudes can include a critical spirit, self-pity, self-righteousness, indignation, pessimism, and a persecution complex.

Sometimes people with invisible illness or disability advocate poorly because we are fed up. Maybe you have faced very real discrimination. This can make us feel defensive. Worse? It can make us go on the OFFENSIVE. However, advocacy is similar to a trial. We plead our case, provide evidence, and attempt swaying another to do the right thing and perhaps facilitate change, follow the law, understand our predicament, or simply raise awareness.

It was not the responsibility of Outback Steakhouse to make sure my service dog had an easily accessible place to potty before entering the establishment. Had I gone in and demanded accommodation for something like that I wouldn’t have gotten very far. I did let them know that the crew they hired to plow their parking lot had piled a bunch of snow up in a handicapped space, “… and what was someone to do who wanted to eat out and had mobility issues, needing the space?” (I’ve noticed people listen to a person with disability advocating on behalf of another with disability).

Unfortunately, this doesn’t mean that you never have to…

“lock and load” (Ok. That’s is a bit much, yes?)

“gird up your loins” (Umm. Creepy much?)

“put up your dukes” (*rolls eyes* What is this? A boxing match?)

FIGHT FAIR. That’s right. Sometimes you may have to fight to make sure your rights as a person with disability or invisible illness are upheld. But remember, this is about equality, not superiority. In the end, you want to sway others to your way of thinking or to understand the law. This isn’t about special privileges, recognition, or “it’s all about me”. That has never defined advocacy.

Denise Portis

Reverse Discrimination

Published on March 25, 2013March 25, 2013 by hearingelmo4 Comments

Kyersten and Chloe at the "Candle Barn" in Bird-in-Hand, PA — Kyersten and Chloe at the “Candle Barn” in Bird-in-Hand, PA

Discrimination. Pronounced, the word even “sounds” ugly. According to the United States E.E.O.C, discrimination can fall into the following cateogries: age, disability, equal pay/compensation, genetic information, national origin, pregnancy, race/color, religion, retaliation, sex, and sexual harassment (U.S. EEOC, 2013).

For those of us with any kind of disability, the Office of Civil Rights enforces Section 504 of the Rehabilitation Act of 1973, Section 408 of the Rehabilitation Act of 1973, and Title II of the Americans with Disabilities Act of 1990. As I mitigate my own disabilities with a service dog, I was thrilled to see the ADA clarify specifics for folks like myself (See ADA 2010 Revised Requirements).

One of the more troubling truths about discrimination, however, is how quickly the “tables can turn”. Those who are often discriminated against can very easily become those who discriminate. It sneaks up on you.

Teaching the Teacher

The photo above is of my daughter, age twenty-three, and taken at one of our favorite “day trip” areas. Bird-in-Hand, Pennsylvania, is a quaint little village in Lancaster county that makes you feel as if you’ve stepped back in time. Kyersten is a young adult now and I’m pleased we are friends. She has taught me many things through the years as she usually presents tough topics with the poise and thoughtfulness someone twice her age would do.

I always welcome one-on-one talks with her, but in early 2010 I initially was NOT pleased when she informed me that I was discriminatory towards people who had normal hearing.

I sputtered, “Wha…?”

Like she tends to do she began to systematically present the proof. “For one thing, when you are exasperated with a communication problem, you call us ‘hearing people’. Makes me feel like a different species!”

She continued her argument by explaining that I often forget that people without disabilities can be just as big a champion for folks with disabilities as the individual themselves. This may be especially true of those who care for someone with disabilities.

Later, a discussion with my husband had me really feeling sheepish about my own apparent hypocrisy. “It’s perfectly natural to seek out people who struggle with the same things you do, but when is the last time you befriended someone without disabilities? You have OTHER things in common with people. For example, your faith, your background, and your profession… all put you in specific environments where you can get to know people and enjoy the reciprocal benefits of friendship.”

OUCH.

“License to Kill”

To “self-identify” is a topic discussed in many forums. Many believe that to do so goes hand-in-hand with acceptance and self-respect. One of my favorite “women of courage” buddies is a young woman by the name of Hunter. She and I both received our assistance dogs from Fidos For Freedom, Inc. Hunter was the first person I heard use the term “differently abled” instead of disabled.

I totally “get” choosing a more positive spin on a word many of us hate at times. However, I’ve also learned that because this is STILL the way the law identifies us (and protects us), I’m OK with being a person with disabilities. (Though like Hunter, I will quickly point out exactly how I simply do things differently…)

Labels – even those we pin on ourselves – can go SO WRONG, however. Once we start behaving as if our status “sets us apart” and in some way elevates us over another, we’ve really lost our purpose. Our goal is equality after all, correct? Many blogs I follow written by people with disabilities or who live with invisible illness, simply want to be accepted and treated normally.

I’m disabled and YOU are not… therefore I’m entitled to this, and This, and THIS. Obviously, a person who does this has missed the point. Yet, just as we may inadvertently reverse discriminate against those who live WITHOUT disability or invisible illness, we may choose to wear our “badge” as if it gives us free reign to disrespect others.

Guard your Tongue

Are you a person with a disability? Do you live with invisible illness? Does a chronic medical condition shape who you are? Do you have a service animal?

YOU are a person of influence.

Recently, I went to get a new contact prescription. I’m having to do so every 4-6 months unfortunately. As a result, I’m getting to know my eye care professional very well. At my last appointment with her encouragement for me to “see a specialist” ringing in my ears, she rolled her chair closer to me and said, “Can I share something with you?”

Immediately wary of the WAY she said it, I hesitated but said, “Sure! What’s up?”

She shared, “Until I started seeing you, I hated knowing a hard-of-hearing patient was waiting for me in the examination room. In the past, hard-of-hearing patients seem to be defensive, argumentative, and easily frustrated. I understand it can be hard to look through corrective lens with the Phoroptor as it means you cannot see my face to hear, but you are the first to not act as if it is my fault”.

I was stunned. I’ve always used humor to try and alleviate any discomfort others may feel as I enter an establishment with service dog and blinged-out cochlear implant. Yet later, I found myself wondering if I had ever treated someone poorly simply because I was frustrated.

Hopefully, my ability to laugh at my own fax pas and miscommunications will compensate for some of the bad experiences my optometrist had with people who have hearing loss. With regret, however, I could remember many times where I “blew it” and had a negative influence.

One rainy day, I entered a new building on another campus for a class and stopped at the security desk for directions. Before I could state the problem, the campus officer asked, “Why is that dog in here?”

Yeah. She could have stated it a little more diplomatically, but I became immediately defensive. I blurted out all the ADA information I knew about service dogs and then said with exasperation, “Where are the elevators for the classrooms above?” Several weeks later after classes were finally routine for me, I had to stop and apologize to her. I was out of line.

Every encounter you have with people at work, stores, places of business, and even church are an opportunity for you to be a GOOD influence. You set the stage for future encounters for these folks. We can be a good influence or a bad one. We shape future encounters for people just like us. Remembering that has helped me be a little more patient.

Bottom line, my point? Let’s practice what we preach…

Denise Portis

United States Equal Employment Opportunity Commission (2013). Discrimination by type. Retrieved March 25, 2013, from http://www.eeoc.gov/laws/types/

Embracing Freedom

Published on November 19, 2012 by hearingelmo7 Comments

Hearing Elmo welcomes Ruth Ilean Fox as guest writer for this week’s post. I was trying to remember the first time I met Ruth – most likely at a HLAA convention, but we’ve also touched base from time to time via email and now FaceBook. Ruth has always been an encouragement to me, so I was thrilled when she agreed to write for Hearing Elmo. Her reminders about embracing the freedoms we have is something we should all remember – and share.

Accommodations for disabilities equal freedom of functionality. Yet how often, instead of embracing freedom, have we turned down accessibility options because of personal discomfort.

Everyone has challenges, some slight and some difficult, which hinder the achievement of a particular goal. There are all sorts of tools and techniques that help to bridge these barriers to functionality. Glasses help some vision impairments; hearing aids and cochlear implants assist some hearing losses; sign language and cued speech provide alternative communication; canes, Seeing Eye dogs provide guidance for those with limited or no sight; wheel chairs, walkers, and service dogs assist with mobility challenges. Then there are ramps that provide building access, assistive listening devices that shorten the distance between the sound source and the listener; and captioned TV, phones, and movies enhance understanding. This is just a tiny fraction of hundreds of forms of assistance that is available to people with challenges. The list grows daily as new ideas are invented and accessibility laws are enforced. Most of these things were not even in the dreams of inventors as recently as 30 years ago. The ADA became law just over 20 years ago. It is exciting time for people with disability; challenges are being turned from absolute barriers to varying degrees of freedom.

Usage – Not Access Provides Freedom

Access to accommodation alone doesn’t provide freedom; it has to be used. Various situations cause people to reject available accommodations. Many people are apprehensive of publicizing the presence of their impairments. It is possible that they don’t like the way the accommodations changes their “average person” appearance causing stares and comments from other people. They may feel awkward with the use of an accommodation because it is new to them. Their patience may be stressed because accommodations don’t always work the way they expect.

As a person with multi-disabilities, who doesn’t want to miss the fullness that life has to offer, I have had a lot of experience with “seeking freedom through accommodations”. I have had the joy of watching the world develop from a time where you provide your own accommodations; develop your own accommodations; or patiently accept a significantly poorer participation in an activity where accommodations did not exist, to a world where accommodations are appearing in many places. Accommodations are appearing as public services, insurance companies are slowly accepting accommodations as reasonable coverage options, the market place is overlapping accommodation needs with features for the average person, and manufacturers are making accommodations more attractive as well as improving their capabilities.

Still even with this greater access to accommodation, it sometimes takes nerves of steel to venture out in public the first time with a new accommodation. My first accommodation experience was glasses at a time that “four eyes” was a favorite taunt of my eight year old peers. I would leave them at home, losing the freedom of sight. A hearing aid was the next accommodation, with which I experienced much anxiety trying to hide it and my hearing loss, instead of embracing the new found freedom of hearing. I did a bit better with the cochlear implant, as the novelty of it was interesting to most people. Then crutches, a walker, a mobility scooter, and a wheelchair became necessary accommodations for me. Each one of them caused extreme anxiety as I first used them in public. Their use provided freedom of mobility, but my focus was on how different they made me and I was sure that everyone was staring at me and my disability.

Hiding and Denying a Disability Does Not Make it Go Away

The one thing I did learn from my youthful response to glasses was to be persistent. Hiding and denying a disability never made it go away. I have find that even if my heart double beats; my face turns red; and my hands shake and sweat, I was where I wanted to be in the community. The discomfort was fleeting and I relax in the knowledge that most people around me respond more to my smiles and communication, than all my paraphernalia.

My wish for everyone struggling with the effects of disability, regardless of its degree or kind, is to explore accommodations; patiently work through the initial anxiety; and embrace the freedom.

– Ruth Ilean Fox

It’s Not Easy Being Green

Published on August 20, 2012 by hearingelmo5 Comments

I love Kermit. For the record, I loved Kermit before Miss Piggy loved Kermit. In the early 70’s, Kermit first poignantly croaked out that “it’s not easy being green”. Being green was something he could not help. It simply was.

This song has since been associated with people lamenting their own self-identity, yet coming to terms with “it being what it is”. By the end of the song, Kermit admits it’s OK to be green and that it is how he wants to be.

Am I OK Being This Way?

Something I have struggled with in acceptance of acquired disabilities is “the new me”. You see… I wasn’t born green. I can’t even say the transformation was similar to the beautiful miracle and mystery of a caterpillar changing into a butterfly.

And yet… it’s not like I asked to be late-deafened. It’s not like I asked to have a balance disorder like Meniere’s disease. But just like Kermit being green, it is what it is. There is no changing it.

So if this is me now, am I OK with it? Anyone with acquired disabilities ever struggle with that acquisition? If I asked for a show of hands, you’d first notice my own raised palm. I think you’d also notice a great number of hands. You aren’t alone.

Like many of you, I feel good about who I am much of the time. But I’d be lying if I said it’s always easy to be me. It’s not. So what to do?

Acceptance ≠ Resignation

I’ve never heard a person with acquired disability or chronic illness say, “This is easy”. It’s not. Yet do you know what I have discovered? I have this fuzzy, old memory of “life before disability” and IT STILL WASN’T EASY. My friends? Life is not easy. If you haven’t figured that out yet then you are still very young. Or, perhaps you are a frog.

I am discovering that acceptance of where I am (or even where I may end up), does not mean that I give up. Nor does it mean that I am resigned to an unhappy, unfulfilled life with no chance of ever giving back or having a purpose.

I get some “flack” with some of my readers about using the word “disability”. Rest assured, I welcome ALL opinions and discussion about the posts here at Hearing Elmo, as do the guest writers who participate. Some have suggested that using the term disability lowers one’s expectations and influences self-esteem. I understand the argument and point of view by those who believe this. I use the term because it is the terminology used by the ADA which ultimately protects my rights as a person with disability. It is about my freedom as a person who negotiates life a little differently. You may use disabled, differently-abled, special challenges, etc. In the end though it is green; though some may call it lime, olive, or chartreuse.

So today, August, 20, 2012, I am a person with disabilities. It’s not easy. But it isn’t impossible. Bottom line, because of who I am today, I compromise. I’m going to Hershey Park with a big group of couples from our church. I’m the self-designated pocket book holder. I won’t be riding any rides. I cannot. But I anticipate a day of fun and fellowship with other folks my age. I don’t choose not to go. For me, that would be giving up so it is not an option.

I don’t use the phone well, but I can use captioned phones, assistive technology, and my cochlear implant to make do. I use email a lot – and yes, FaceBook too. I walk like the world is in motion – especially on rainy days. Yes, yes, I know. The world IS in motion, but trust me! My earth’s rotation is faster than YOUR earth’s rotation. So I often walk with a cane. I have an assistance dog who counter-balances, and retrieves things I drop. I say, “Whoa!” a lot.

Don’t Pin a Super Hero Cape on Me!

Before you pin a super hero cape on me, please know that I don’t always have good days. I don’t always wake up and believe I can take on the world. I do not always look in the mirror and like what I see. There are times I worry about where I am in terms of what I can and cannot do. What is important, I believe, is what you do after having those very normal feelings. Worried? Totally normal. Depressed? This can be a very normal reaction. Pissed? Believe it not, being angry is a normal response to acquired disability. When you STAY worried, depressed, or pissed it becomes a problem. Don’t be afraid to talk to others. Perhaps you need to see a counselor. Maybe you need to do something just for YOU to work off some of that negative steam.

You will never hear me say it’s easy being green. It’s not. But acceptance of where we are allows us to then LIVE and even to give back – to be productive and have a life of purpose. Just like Kermit croaks, we may not be sparkly and flashy like others. Within each of us is the desire to discover and acknowledge that our being green – is OK. Perhaps even good.

I welcome your thoughts on this!

Denise Portis

It’s Not Easy Being Green lyrics

It’s not that easy being green
Having to spend each day the color of the leaves.
When I think it could be nicer
being red or yellow or gold
or something much more colorful like that.

It’s not that easy being green.
It seems you blend in with so many other ordinary things.
And people tend to pass you over
’cause you’re not standing out like flashy sparkles in the water
or stars in the sky.

But green’s the color of Spring.
And green can be cool and friendly-like.
And green can be big
like an ocean
or important like a mountain
or tall like a tree.

When green is all there is to be
It could make you wonder why, but why wonder why?
Wonder, I am green and it’ll do fine
it’s beautiful!
And I think it’s what I want to be.

Round and Round She Goes, Where She Stops…

Published on July 30, 2012September 20, 2012 by hearingelmo6 Comments

… is USUALLY on her nose.

If you live with invisible disabilities or chronic illness, have you ever stopped and tried to make sense of it all? More often should I choose to do this, I find it simply doesn’t make sense. What can be more difficult, however, is trying to help someone ELSE understand what it is like to be a little “different”.

The words disability is a like a nasty tasting curse word to many. Personally? I’m not afraid of the word because it does currently define my rights under the ADA – something I wish wasn’t necessary but is in order to make sure that those who navigate life differently have the same access and rights as everyone else. I’m not here to today to discuss the WORD, however. I am here to bellyache.

A friend of mine posted a link to a terrific article currently taking up space at Invisible Illness Awareness Week. It detailed why it is important to just LISTEN sometimes. You can access the article HERE.

I belong to a number of online support groups for people with Meniere’s disease. I’ve never met anyone with symptoms exactly like mine. As a matter of fact, Meniere’s disease often frustrates perplexed physicians who are trying to help treat the disease. However, because there is no cure, one can only learn to manage and treat the symptoms. What may help one person, does not help another at all.

My assistance dog, Chloe, from Fidos For Freedom Inc., is a big blessing. Originally trained to be a hearing dog, she still performs all her hearing alerts with finesse and enthusiasm. As a matter of fact, 7 AM came WAY to early yesterday morning when my alarm went off. I tried to tell her to go back to bed and stop kissing my hand, elbow, and right ear. My husband rolled over and said, “Hello? Your alarm is going off!” Oh.

But Chloe actually helps me with far more balance related tasks each day than she does hearing alerts. I tried to “track it” one day and she performed 17 hearing alerts (alarm, kitchen timer, automatic retrieve of items I’d dropped and hadn’t heard, door knock, and cell phone ringing) and over 40 “other” tasks. (I quit counting after 40). These usually consist of directed retrieves. I drop things. I drop things a lot. Picking them up myself takes time as a bend all the way to the floor often precedes a fall. To avoid that, I simply let her get them for me. She also acts as a steady brace when I stand, sit, or go up/down stairs. She also acts as a brace if I begin to weave in a large cavernous place. The picture I chose for this post reminds me how bad my visual field was on Saturday. I ran into the mall with my husband to pick up something at a favorite store. When sound echoes, I tilt. (Picture Denise, aka Leaning Tower of Portis). Chloe has a large handle on the top of her vest that works perfectly. On my lower left is a solid helper that keeps my world from being quite so off center. I’ve been in JCPenney before and let go of her handle to look at some clothing on a sales rack. I immediately felt “swishy” because of the tall ceilings and lights. I grabbed out to keep from falling and clutched the breast of a nearby mannequin. I don’t make these things up. Thank goodness she/it wasn’t real, right?

Yet there are things Chloe cannot help me with, too. Here are some things about Meniere’s disease that surprise some folks:

1. Scrolling words or moving backgrounds on PowerPoints make me sick.

Our church places the words to songs and notes for the message on the walls in the sanctuary. This is very helpful for anyone with hearing problems… or ADHD (smile). However, sometimes there are moving points of light or star bursts that move behind the words or notes. I’m fine as long as I’M SITTING.

2. I have to sit to brush my teeth.

Yeah. I know, I know! Strange! But there is something about moving a toothbrush around in my mouth while in a standing position. I have to sit, and there are days I actually have to close my eyes on top of that!

3. Stepping down can be problematic.

This one really bugs me. On sunny days (weather is a trigger for me), I love to hike and climb around. I love rocks. Big rocks. I love heights (believe it or not). However, stepping down more than 6 inches is enough change in my altitude that I black out. It may only be for a few seconds, but if both feet are not on the ground, I’ll be picking blades of grass out of my nose hair. Chloe has learned that a “Whoa!” from me means

Move.

NOW.

4. Must… AVOID… looking… at ROTATING things (gasp)

Ceiling fans are not my friend. Neither are signs hung from ceilings when the air conditioner vents blow on them to make them twirl. For me this means heave, deep breath, heave again. I’m serious. 🙂

5. I shower while looking at my feet.

I didn’t realize how difficult it can be to get clean when you can’t look up at the shower head. Raise your eyes to reach up for shampoo or your razor? Honey? Do you want to get up close and personal to the DRAIN? Heaven help the family member who moves my shampoo or washrag from their designated place. I count on where they are so that I can shower safely… while looking at my chipped toenail polish.

6. Watching the effect of the wind can topple me too!

We’ve had some terrific storms lately. Since it has brought much needed rain, I’ve been loathe to complain. I love standing on the deck and watching the wind blowing the towering pines behind our home. Clarification: I like hanging on to the rail of our deck and watching the wind blow the towering pine trees behind our home.

7. Gingery’s Baby Pegasus can be mesmerizing to my detriment.

My daughter’s 12 pound hairless Chinese Crested likes to spin. For fun. Imagine that. It is quite captivating, but it only means CAPSIZING for me. “Look away, Denise, Look AWAY!”

8. I fuss at my son’s stomach.

My son… you know the one who was 7 weeks premature? He is 6 foot 3 inches tall. He’s a terrific kid. However, even at 21-years-old, he still needs the occasional “mama sermon”. I dare not look up, Up, UP into his eyes. One isn’t able to reiterate needed reminders when flat on the floor. Instead I point my finger and give his belly and chest “what for”. The kid laughs at me. LAUGHS. (sigh)

9. Glass elevators have speckled carpet.

I know this because I only see the carpet in glass elevators. Why not solids? Stripes? Only speckles. This confuses me.

10. I remind my doctor that I will NOT hold my breath while he’s listening to my ticker.

Because… well otherwise I’m waking up with nurses, hound dog, and doctor crowded around. (Why crowd someone who has swooned? Can I just ask that?)

Like many people who get up every morning and “manage” their symptoms, I hope perhaps I’ve helped you understand balance disorders a little better. Feel free to share your own “management techniques”.

Denise Portis

Decisions, Decisions…

Published on July 16, 2012September 20, 2012 by hearingelmo1 Comment

For a totally unrelated reason, I was reminded this week that my husband cannot swim. I hate it when a discussion brings up old nightmares about the topic too! Goes to show how much our subconscious is at work… especially when sleeping. Anyway, this conversation about the fact that my husband cannot swim had me dreaming about one of the most terrifying events that led up to my banning him from going into the ocean.

The year was 2001, and my family and I were in Siesta Key, Florida. Terry was taking some classes to finish up his doctorate. Always nice when degree completion requires on-site classes in Sarasota, and you can time it where the whole family can be dragged down with you! Terry wasn’t getting much rest and relaxation. Going to class all day and putting the finishing touches on his dissertation were exhausting. At night he was glad to just catch whatever sunshine was left in the day and rest on the beach while I corralled the kids into a distance I could easily manage their activities.

I’m not sure what prompted a non-swimmer without a life vest to decide to get on an inner tube, launch one’s self into the ocean, and drift off to sleep. He swears up and down he had no idea he’d drift out to sea. After all, when he got past the breakers and could just snooze, the ocean was calm and serene. I’m the one with hearing loss (a fact I’ve made plain on this blog). But exhaustion and FREAKIN’ DISTANCE FROM SHORE will dissipate sound waves and keep someone from hearing shouted warnings; even from hearing ear-drum piercing screamed warnings. That’s right. Picture me on shore with kids, jumping up and down, screaming warnings that a riptide had caught him and he was oblivious to the danger. I remember thinking, “he has the room key around his wrist so I can’t even get into our condo and have one of the kids call my parents to let them know Terry drowned”. Morbid, yes? But I knew Terry could not swim AT ALL. The man cannot even dog paddle (something Chloe has told me since that she’s a little embarrassed about actually).

We may not have been able to attract Terry’s attention, but we did other folk’s. Soon a small crowd of people were whistling and hollering for “Terry!” A man, likely a native, stopped close to me and said something. I could hear the rumble and pitch of his voice. I stopped screaming long enough to sputter, “I have a hearing loss and have to see your face to hear”. So he touched my shoulder to get my attention and said, “He can’t swim? Want me to go after him?” I looked out at my still sleeping husband and agreed immediately. “YES PLEASE!!!!” (At least I’m polite...)

So the man went after my husband. He must have been shouting as he swam, because when he got closer to Terry, I could barely make out that Terry finally woke up. I saw a flail of hands, legs, and arms and prayed he’d hold on to that inner tube! The rescuer had started further up the beach to Terry and I think the tide and his strokes eventually got him safely to Terry’s side. He must have given him instructions to kick, which he did as well along with some steering, and eventually ended up on shore about a mile from where we all started. The small crowd of people had followed the kids and I down the beach. Some kind soul had picked up our things and carried them with us, knowing I wasn’t cognizant enough to even do that.

Drifting Off

A very popular topic for writers who discuss acquired disabilities and chronic illness, is social isolation. Isolation does not happen all at once. It is a gradual process; a series of small decisions and choices that eventually yield a self-perpetuated aloneness. We become “deaf” to the shouted (and well-meaning) warnings of people around us. Can we be rescued? Will we even allow a “strong swimmer” to intervene?

For people with hearing loss, isolation is almost a part of the process of learning to live with it. I know few people who are late-deafened that did not have at least a short period of self-imposed isolation. Why? Well experts have said of the late-deafened, “They no longer felt they belonged in the hearing world, and neither did they belong in the prelingually deaf world. Onset of deafness had left them in a twilight zone between worlds and had robbed them of their identity” (Barlow, Turner, Hammond, & Gailey, 2007, p. 442). Other acquired disabilities can produce the same isolation, however.

Physical difficulties can prevent people with a mobility impairment from creating social networks. Even the weather can keep some folks with mobility issues away from others. If you have a power wheelchair or scooter, you do not want to go out in the pouring rain or blistering heat. Despite the intentions of the ADA, not all places where friends get together are accessible. Whether you are born with some limitations, or acquired them later in life, disabilities or chronic illness may result in feelings of loneliness and isolation, and a lack of access to support information (Matt & Butterfield, 2006).

Not As It Seems

Not all decisions to RSVP to invitations with a “No, thank you” are because of isolation, however. Friends and relatives need to understand and trust that sometimes? Those “no’s” are not a pity party nor decision to pull back. I don’t go to pool parties. I have technology that cannot get wet and a husband who cannot be in the heat because of having one kidney. (And have you picked up yet that THE MAN CAN’T SWIM?) Sometimes there are very legitimate reasons for declining an invitation. A person may not be able to do evening gatherings because they have legitimate needs for an early night. Folks with disabilities and chronic illnesses often require more sleep than the average adult. It is not always possible to nap the afternoon before in order to go to some evening “shin dig”. Some people have to offer late apologies to activities they had planned to go to… but they have a “flare” when it comes time to prepare for an outing of fun and fellowship. The weather gets the final say for some of us. I can agree to go to a “Girl’s Night Out” a week in advance, only to have a weather system move in to where I can barely move in an upright position.

But…

I have also fudged about going to things I really could have had I really wanted to attend. Sometimes we say “no” because that is

EASIER or

HABIT.

We have to learn to police ourselves and ask ourselves some legitimate questions when our first impulse is to decline an invitation.

Social Networks

Nothing gets on this female’s nerves more than when I hear someone ‘pooh-pooh’ social networks like FaceBook, My Space, Blog networks, online support groups, and message boards and forums. I have heard holier-than-thou folks spout that these avenues “aren’t real people” and therefore are not “real relationships”. Drs. Patricia Obst and Jana Stafurik refute this much better than I can. “Online we are all able-bodied“. Online there is a “psychological sense of community and social support found through membership of disability-specific websites” (Obst & Stafurik, 2010, p. 525). These researchers looked at 160 different individuals who had various disabilities or chronic illnesses. “Results indicated that users did receive moral support and personal advice through participating in such online communities. Further, results indicated that online social support and feeling a sense of community online were positively associated with participants’ well-being in the areas of personal relations and personal growth” (Obst & Stafurik, 2010, p. 526).

I am always thrilled to have guest writers here on Hearing Elmo. (Interested? Email me at denise.portis@gmail.com). This forum has provided information and support to individuals “living it” and to family members and friends for information. I have been invited to write in other forums and welcome the opportunity. Ever heard the phrase, “dissemination of information”? The Internet makes us equal. It provides an easy, inexpensive way to find support, learn, advocate, and connect.

It can also serve as an avenue in which a warning comes through loud and clear… even to those of us who are late-deafened.

Are you avoiding outside activities?

Are the reasons you are doing so legitimate?

Are you connecting with others?

Are our decisions prompted by necessity or the result of anxiety, depression, and an attitude of giving up? These are important questions to ask ourselves. Please don’t find yourself adrift on an ocean with the shore out of reach. Ask for help. Discover a hero swimmer on their way to rescue you.

Denise Portis

Barlow, J., Turner, A., Hammond, C., & Gailey, L. (2007). Living with late deafness: insight from between worlds. International Journal Of Audiology, 46(8), 442-448.

Matt, S. B., & Butterfield, P. (2006). Changing the disability climate: Promoting tolerance in the workplace. American Association of Occupational Health Nurse, 54, 129–134.

Obst, P., & Stafurik, J. (2010). Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. Journal Of Community & Applied Social Psychology, 20(6), 525-531. doi:10.1002/casp.1067

Life With Someone Else’s Service Dog

Published on June 25, 2012June 25, 2012 by hearingelmoLeave a comment

Dr. Terry Portis is director of the Center on Aging at Anne Arundel Community College (AACC) and teaches in the psychology department. He supervises 205 faculty and staff who serve 4,100 students each year. Dr. Portis has presented dozens of workshops and written numerous articles on marketing, program design, psychology of disability and health, personal development and technology. Prior to coming to AACC, Dr. Portis was executive director of the Hearing Loss Association of America.

Terry’s wife Denise has been a client at Fidos for Freedom since 2006. Terry has served on the Board of Directors at Fidos For Freedom since 2011.

When a person is matched with a service dog they have to make adjustments in their life, and so do the people who are around them. This is especially true for the spouse or significant other who spends a lot of time with the person matched with the dog. You may think the service dog will only change the life of the person you love. However, there are changes you should try to anticipate as well.

Be prepared

There are a few negative issues that one has to deal with when a service dog enters your life. First, service dogs are very noticeable wherever you go. Most places we go I find people to be open and accepting. However, there are small, bitter people in the world who enjoy confrontation and have a “know it all” attitude. They may think they know the law because their third cousin has taken some classes in college. Having to occasionally deal with these unpleasant people in public can be very frustrating. It may also be difficult for you to let the person you love deal with these issues by themselves. Denise spent a lot of time in training and I suspect because of decades of advocacy work, it does not bother her to have to carefully explain the law to someone trying to deny access. At Fidos For Freedom, they spend a lot of time making sure the clients are prepared for these scenarios. Even though service dogs are not as unusual as they use to be, Denise will still occasionally enter an establishment that has never seen a service dog for hearing alerts and balance assist. Because I’m her husband, sometimes it is hard to stand by and let her stand up for herself. It certainly doesn’t hurt to make sure that family members are aware of the ADA allowances for people who mitigate their disability with a service dog. There have been times that Denise has been oblivious to someone trying to get her attention to ask her to leave the store with the dog. If I’m in the vicinity, I have spoken up and explained that Chloe is a service dog and can accompany Denise.

Another thing to be prepared for is the planning needed to make even small local trips. In the summer avoiding hot asphalt is always a consideration. Looking for parking spaces near grass is a challenge. We also think about which restaurants have the best seating for us. All of these things become second nature, and I find myself thinking about these things even when I am by myself.

Enjoy the experience

These few inconveniences though, are worth it for the value that a service dog brings into a person’s life. It is reassuring to have another set of eyes and ears to help protect and alert the person you love. Service dogs build confidence and help reduce feelings of isolation that people with disabilities often experience. If I know Denise is away from home teaching or running errands, I know I can call her phone and Chloe will let her know the phone is ringing. I know if she falls or drops things, Chloe is there to assist. I actually worry about Denise far less now that Chloe is a part of her life. According to Rintala, Matamoros, and Seitz (2008), service and hearing dog recipients reduced their dependence on other persons. As Denise became more independent, I worried less and also knew she was less dependent on me. As I knew how much she valued her independence, I fully supported her training and match with Chloe.

A service dog can be a very positive experience for everyone. You also have the opportunity to be an advocate, to tell people firsthand what you have experienced and learned. Dogs that have the intelligence and temperament to be service dogs are special, and the kind of dog most of us have never seen before.

Finally, a service dog becomes a part of the family. Chloe is like an extension of Denise, so she is around all the time. As a result, I’ve become her buddy as well. She is pretty excited about my coming home from work each night. It reminds me of when my children were little and were excited that “Daddy is home!” Having Chloe in our lives has been an easy adjustment for me. Chloe has fit seamlessly into our schedule and the peace of mind I have knowing how much she watches out for Denise is really worth the wet doggie kisses she gives when our alarms go off in the morning.

Rintala, D. H., Matamoros, R., & Seitz, L. L. (2008). Effects of assistance dogs on persons with mobility or hearing impairments: A pilot study. Journal Of Rehabilitation Research & Development, 45(4), 489-503.

Denise Portis