Sometimes? There’s Not a Great Solution…

Chloe doesn't know Spanish...

Sometimes? There is not a great solution available for positive advocacy.

This past Friday, my 21-year-old daughter asked me to go shopping with her. I’m always thrilled when she CHOOSES to spend time with me, so I agreed so long as it was the morning so that we could “beat the heat”. She agreed. She wanted to shop for new “under things” and I knew JCPenny was having a sale on these items. Kyersten, Chloe and I headed for Annapolis Mall to shop.

The bad thing about shopping in the “intimates” department is that there is not much room to maneuver. I was having some difficulty with my balance as well so I was just being extra careful about how much moving I had to do. Chloe does great even in confined spaces with the exception of that tail. I talk to her a great deal while we are out because it helps to keep her attention on me. Kyersten was busy looking at different styles available.  My main job was to offer the occasional opinion and situate Chloe so that her tail didn’t knock things off with her loving “wag”. Chloe may not understand all that I say to her, but she does know her name and will wag as if she is paying attention to everything else I’m saying. Because my attention was on HER, and as we were in “tight quarters”, I was taken by surprise by two little girls who ran up and threw their arms around Chloe’s neck.

One little girl was about 4-years-old, and the other (obviously big sister) was probably 9 or 10-years-old. I stuttered out, “Oh! I’m sorry. She’s a working dog and cannot be petted right now”. The girls continued to squeeze and talk excitedly.

I tried to tune in a bit better and realized they were talking in Spanish. With my heart plummeting to my stomach, I held up my hand and shook my head NO saying, “Please don’t pet her. She is a working dog”.

The older girl stopped and tried to talk to me in English, and I understood “She’s a pretty dog”. At this point Chloe broke her sit/stay in order to break the choke hold. I was unprepared and went to my knees and caught myself on a rack.

With bras, panties, and tiny hangers attached to various body parts, I again held up my hand, shook my head no and said, “No please!” in a very firm voice. As I was still wobbling, I sat on my caboose to get my bearings.

The older girl said, “Oh … sorry” with some other words that I could not make out because of the accent. I did understand that she understood that Chloe was NOT to be petted. In Spanish she (I think) explained to her younger sister about Chloe. I think she realized something was amiss because I was now sitting on the floor with lingerie scattered around me. She left quickly with her little sister in tow.

I had Chloe brace so that I could get up, and asked my daughter to pick up some scattered articles. (Chloe could have, but I didn’t figure anyone else would want dog saliva on merchandise). Right as I was on one knee about to stand, the youngest came zooming around the corner with a squeal to squeeze Chloe again (who was now in a stand/stay and “brace”). I held up my hand and intercepted the young lady and my hand blocked her at the chest. Although I did not PUSH, it did stop her in her tracks. I said firmly with a head shake, “NO!” She turned and ran away.

I did NOT want to place my hands on someone else – let alone a child. I didn’t injure her, but I really felt out of options. I was “rattled” the remainder of the day. I was very upset with MYSELF that the resolution to this problem ended up playing out like it did.

When All Else Fails… Be Firm

I did look around for the youngster and never did see her or her older sister during the remainder of our shopping trip. When something doesn’t go according to plan I tend to beat myself up about it I’m afraid! I kept thinking about other options I may have had, and tried to think of what I might do should this happen again. (I’m open to suggestions – grin).

Sometimes we can try to advocate in a positive way – and the situation may just fall apart. Sometimes? You just have to be firm and resolute. We should always try to be positive and upbeat at the beginning…

“It would assist me in staff meetings if everyone would just pop a hand up before speaking so I can locate who is talking”.

“I can easily do my share of answering the phone if I had access to a captioned telephone that would provide understanding for when I don’t hear everything”.

“She’s not a pet. She’s a service dog and she can come into the store with me”.

Yet there are times we may have exhausted other options and have to stand firm.

“I need everyone to simply pop your hand up with a small wave before you speak. Thanks in advance”.

“I will require a captioned telephone so that I can do my job and share the task of answering the phone”.

“Here is a flier about what the ADA says about my rights. I’ll be over there shopping should you have any additional questions”.

I don’t think ANY of us welcome having to be firm and insistent, but there is a time and place for being firm. I try to always remember that there will be others who come after me that may also have accessibility issues. How I handle a situation may condition someone with normal hearing to respond to the next person they interact with who has a disability. There are times, however, when all pleasant and positive avenues have been closed to you. Even in your firmness… keep your cool. Keep it short and stick to the facts. My husband grins and tells me, “Denise! TMI. Keep it short! They don’t care about your background or care to hear your story”!

Accents, Foreign Languages, and Hearing Loss

The great thing about our country is the diversity. Because of where I live there are a large number of minority populations who speak English as their SECOND language. I do not speak an oral foreign language so I’m a little jealous of those who can! My mother taught high school Spanish for over twenty years, but her children never learned (much to her dismay). I have a lot of respect for people who speak English as their 2nd language. It is difficult, however, to understand language when an accent distorts the way a cochlear implant and/or hearing aid pick up the words. I have trouble understanding people with thick accents that may speak PERFECT English. I even have problems with American accents such as folks from Boston, Texas, etc. (I understand “Southern” as I lived there for so long!)

However, the fact that I have difficulty with accents, is MY problem. People with hearing loss should have patience with those who speak other languages as their primary language. I have heard late-deafened folks demean and criticize those who speak other languages. I always think to myself, “Really?” It is far more productive to explain that you have a hearing loss and have trouble understanding when an accent is present. Let them know that you are aware it is your problem, and pleasantly ask if they can perhaps speak slower and face you when they speak. I’ve overheard HoHearies blast people with heavy accents – as if it is THEIR fault! Always – ALWAYS – remember you are an advocate for others with hearing loss whether you signed up for it or not! If you are negative, critical and defensive, you are having a negative influence on how the rest of us are treated in the future. Yes, it can be frustrating and even embarrassing to have to ask someone with a heavy accent to repeat themselves again and again. But “own” the problem as yours – it isn’t their problem. It’s a big thing to be fluent in more than one language, so treat them with the respect they deserve.

Denise Portis

© 2011 Personal Hearing Loss Journal

Disabled (Grimace)

Denise and Chloe at a dAP for HLAA-Frederick County in 2009

Disability (grimace). There is a small part of me that cringes when I hear that word, for often it is heard with real (or imagined) inflection that denotes a negative meaning. Occasionally, I get some “flack” from some of my readers about using the term “disability” so freely. Some folks hate the word and avoid it all costs. Others embrace it freely, caring not what the “label” may be since they are struggling to simply cope with WHAT IS. Recently, a fellow client at Fidos For Freedom used the term “differently abled”. I like that! That is the first time I’ve heard that particular variation. At Fidos For Freedom (where my hearing assistance/balance assist partner comes from), numerous programs are designed to carry the maximum “punch” in creating awareness in our community. One program is the dAP (disABILITY Awareness Program). Demonstrations are given at schools, churches, community groups, fairs, and much more to inform and teach the public about the different types of assistance dogs available, partnered with people with various disabilities. The program focuses on the abilities of all people and how an assistance dog can provide independence to people who do things “differently” as a result of chronic disease, invisible disabilities, hearing loss, mobility challenges, and much more.

Personally, I use the word ‘disabled’ freely for it is the wording in the Federal law that protects my rights as an individual who happens to have disabilities. As long as the law uses the term, I will continue to use it in order to identify with my freedoms – not my actual disability. I’m all for changing the term “disability” to something less negative, but until that happens on the federal level – I’m sticking with the term that protects my rights. Labels are awful aren’t they? I actually prefer “person with disabilities” for it identifies me as a person FIRST, and the disability second – as a descriptor, not a noun. I’ve been a member of the American Association for People with Disabilities for a number of years. They have done a lot of terrific work in laying the foundation for future laws that protect Americans who happen to be “differently abled”. Do I hope the word is eventually abolished and changed to something more politically correct? Well sure I do… but in the meantime I will continue to use a word that represents my freedom as an individual with disabilities.

Why is the Word So Negative?

Many people who hate the word “disabled” explain that it reminds them they are different. Yet we are. Acceptance of that is key IMHO to truly becoming independent in spite of a “disability”. One reader explained, “the word makes it sound as if I’m broken, or flawed”. It’s a shame society (and sometimes our peer groups) create this false picture of what a disability is. Often these negative connotations are the result of interactions with people who do not live with physical, mental, or emotional limitations that require a “new way”. People can be uncaring and mean (and you don’t have to be in junior high to experience this!). Sometimes the most hurtful things are said by people who actually care about us and are struggling to understand. Ignorance (not stupidity) is often to blame. It’s very difficult – but when you have the opportunity to correct and inform someone who doesn’t get it, do so in a proactive (not reactive) way. I try to remember that what I say may influence how this person interacts with someone else who has a disability in the future.

I believe that those who are born with a disability have the hardest time accepting the term. For example, I have met culturally Deaf people who really despise the word. (The culturally Deaf are identified with a capital “D” to identify a group of individuals who use ASL as their primary means of communication). I’ve often wondered if deaf people (lowercase “d” to identify adventitious deafness) are more accepting of the word because they experienced “normal hearing” for a time and now understand the difference because they are living WITHOUT a sense they once had? I had a Deaf friend at CSD complain that the word “slapped them with a label that meant they couldn’t do something”. I have struggled to understand that. Deaf (and many deaf) people cannot hear. What is wrong with that? Perhaps their thinking is that by accepting that label it requires the adoption of a number of other labels such as “slow”, “dumb”, “broken”, “reject”, “mistake”, and “different”. People who cannot see well without corrective lenses don’t fear being labeled with other words! Why do people with hearing loss fear that? I don’t hear in a normal way. So what?

I’ve heard others mention that the word makes them remember there are things they cannot do. I recently watched a YouTube video of a young Deaf lady who was “going off” on the fact that the only thing she cannot do is HEAR. Anything else she wanted to do she could, and she was not “disabled”. Yet the ADA protects her rights as a Deaf person to insure she has equal access to public events, education, doctor visits, and much more by requiring ASL interpretation so that she may interact on equal footing with those who use their voices to communicate. I suppose I’m a realist. I don’t understand the problem with being aware of what I cannot do. I understand that as a result of Meniere’s disease and hearing with a cochlear implant I will never:

  1. Be a rollercoaster tester.
  2. Wash windows on skyscrapers.
  3. Be a DJ
  4. Be a judge on American Idol
  5. Swing on a swing set (until they come up with an adult size seat similar to the protective seats for toddlers!)
  6. Tune pianos
  7. HEAR without the assistance of my CI

So what? I don’t center my life around this knowledge, nor do I attach any value to “being able to” as opposed to “not being able to”. I chose to enjoy OTHER things. 1) When I go to amusement parks I’m the official photographer. I ride a great number of rides that do not go “around and around”. I can throw a dart that insures I come home with large, ridiculous stuffed gorillas. 2) I can wash windows on lower levels. 3) I can listen to music and “ad lib” as best I can, but if it is a new song I’m lost. 4) I can be a judge on other types of panels. 5) I can climb on jungle gyms. 6) I can PLAY the piano (took 8 years of lessons!). 7) I can hear SO MUCH now as a result of my wonderful CI!

I believe that problem is that OTHERS often attach other meanings to the word “disability”. When they choose to do that, it fosters an attitude of treating a person with disability differently, or of having different expectations of them. Is this where the word “goes wrong”? I welcome your feedback and comments. As long as you don’t swear at me – I’ll post anything even if it disagrees with my own personal opinion. After all, if my desire is that you respect my opinion I can only promise to do the same. So many of you write me to give me “thumbs up”, or “thumbs down” in response to a post. I still welcome feedback privately as well! However, this is a topic I really welcome your feedback for I really am trying to understand everyone’s opinion about this word. I believe voicing opinions about this may help others! So “voice yourself”!

Denise Portis

© 2011 Personal Hearing Loss Journal

Prepared For It?

We simply do not take ANY chances

“The dog days of summer”… whew! Has it ever been hot here in my home state! I could take a repeat of last winter’s snows, believe me! I’ve always preferred 3 feet of snow to 3 weeks of 95 + temperatures! Because of the heat, Chloe and I have been forced to walk pretty late at night. At “twilight” it is dark enough that it isn’t safe to be walking. At least not in my neighborhood where people go 40 mph in a 15 mph zone.

To placate my husband, I make sure Chloe and I are decked out in a number of things that are reflective. I wear a reflective vest, and Chloe a reflective collar. The leash I carry actually lights up near the handle end, and it also sports “lighted bling” of various kinds. I’m sure from a distance we must look like Santa and his team of reindeer! Small price to pay … this GLOW IN THE DARK preparation — for a safe walk! I didn’t anticipate having to walk so late at night, yet preparation has made all the difference.

I’m safe.

It is cooler.

We walk faster.

No… really! Not sure why that is, but the big “loop” we walk is usually 7-8 minutes faster than if we walk when there is more light. Perhaps because we aren’t having to stop to get Chloe re-collected after startling a bunny? Either the bunnies have an early bedtime, or they simply are not seen as easily.

Just Because it Wasn’t Planned, Doesn’t Mean You Don’t PREPARE

I know of very few people who planned to acquire a disability or to be diagnosed with chronic illness. I have become acquainted with people who have progressive hearing loss or are deaf, people who have lost their eyesight due to Usher’s Syndrome, people with MS, Parkinson’s, Meniere’s disease, and Chronic Fatigue Syndrome, people with fibromyalgia and many others who find that they are living a life they didn’t exactly “sign up for”.

So what do you do?

Give up? Try to get a refund? Sue?

Well… most of the people I know “deal with it”. They do so in their own way, and for some it may mean working through it. Working through it for some people may mean that they have a pretty long period of time either denying the problem or grieving the problem. Each of us do this, but some spend more time on these steps than others. That’s OK. I get really aggravated when I hear someone tell a person learning to live with changes that affect their life that they need to “get over it” and “get on with life”. I guess I’m aggravated because the person saying that usually does not have the same diagnosis as the person they are preaching at! However, I do sometimes see someone who DOES share the diagnosis “preach” the same. Just because YOU did not grieve your hearing loss — or whatever it may be that you are dealing with — doesn’t mean that other people deal with the loss the same way.

Once you do work through that process, however, you can start to prepare. Preparation is key. For me preparation looks like this:

1. I always have #13 hearing aid/cochlear implant batteries. I carry some in Chloe’s vest, the car, my pocket book, and Chloe’s treat bag. I have them in my bedroom and my office.

2. My cane is right by the front door. If it is rainy or if there has been a pressure system come into the area, having my cane “handy” insures I actually take it with me out the door. No one “messes” with where I put my cane. If you move it, you risk life and limb (grin).

3. I leave early to arrive early. Let’s face it. It takes me longer to get to where I’m going. For one thing I travel with an assistance dog, and I have to spend a couple of minutes allowing her to “do her thing” before going into a public place. I have to load her up safely in the car. I have poor peripheral vision on one side so I drive the speed limit in a world where no one else does. I allow extra time to get to places ON TIME. Sure! I’m early sometimes, but I am rarely late.

4. I never walk out the door without my cell phone… and I am ZEALOUS about making sure my phone has a full charge. As a matter of fact… I have my cell phone on my person almost every waking moment. (Perhaps something to do with having a kid in college in another state now?)

5. I make it a PRIORITY to get eight hours of sleep. This is so important, I schedule myself to get at least eight hours. Heck! I’ll be honest… I actually do better with nine, so if I can schedule that I do! Having a cochlear implant is terrific! I love being able to communicate without having to actually be in the same room with someone. I’m fairly certain it’s not AGE… it simply takes a LOT of brain power to communicate now! Who’d have “thunk” that communicating with a hearing loss could be so exhausting. It doesn’t seem fair that no calories are burned! It is mentally (and sometimes emotionally) exhausting to communicate with hearing loss. If I get less than eight hours of sleep, it is very noticeable that I do not communicate as well. Fatigue will do that.

6. I make sure I travel with information about service/assistance dogs. You never know when you may have access issues. As a matter of act this has been a pretty prevalent part of our lives lately. (See the links here (with a video too!), here and here).

7. I avoid sodium, limit caffeine (something I find nearly impossible), and take Manganese! These three things I have found to be very helpful in limiting the effect Meniere’s disease has on my own life. Manganese is hard to find too! (Magnesium is plentiful… Manganese not so much). Remembering to make these “BIG 3” a priority, really makes a big difference in how severe my symptoms may be when an episode hits.

8. I memorize and use lines that best describe my communication issues and how I can solicit positive responses. These include:

A. You speak wonderful English! However, I have a hearing loss so I have trouble with accents. Could you repeat that a little slower please?

B. I have trouble understanding in background noise. If you would face me when you talk, I should be able to speech read and hear with my CI (point to it) and hear you much better!

C. I missed what you said. What I heard was (and I repeat the parts I heard). Could you repeat what I missed? (This way folks aren’t having to repeat EVERYTHING).

D. It’s so noisy in here that I am having trouble pulling your voice from “all this chaos”. Can we step over there (points) to a quieter spot? I really want to hear what you are saying.

E. Do you mind if we sit down? My balance is “off” today and if we sit it will give me one less thing I have to deal with!

F. Let’s step over here to talk so that I can put Chloe in a “safe place” so she won’t get stepped on.

There are many more… but it pays to rehearse and have specific examples to communicate to others your attempt at being proactive to help yourself. I have never… not even one time… had someone respond to these types of explanations in a negative way. Preparing explanations like this keep me from slipping and offending someone by spouting off:

A. Geesh, your accent is killing me! I can’t hardly understand what you are saying!

B. Would you quit mumbling and speak slower please? Gee whilackers!

C. HUH?

D. WHAT DID YOU SAY? (In a super loud voice trying to drown out all the noise. Now ever eye is on you and the person who was trying to talk to you).

E. (Denise is bumped and falls to the floor in a tangle of arms and legs… including doggie legs).

F. STOP STEPPING ON MY DOG!

Preparation = Ownership

In preparing and planning, a person with an acquired disability or chronic illness in essence choose to take ownership of their own life. It isn’t another person’s responsibility. It is ours. What ways do you prepare and “own” your life to better live with a disability or chronic illness?

Denise Portis

© 2010 Personal Hearing Loss Journal


Making the World Accessible… One Voice at a Time

I love it when I have guest writers come forward to write for Hearing Elmo. There are so many different types of disabilities, chronic illnesses, and debilitating health issues. Reading different perspectives and other individual’s stories is important. This week Hearing Elmo welcomes guest writer Kacey A., who lives in South Carolina with her husband.

Because I am such a fun and loving wife my husband recently invited to join him as he completed an assignment for his Master’s program. Secretly, I think his intent was to get me to the department store so he could beg me to buy him something!  His assignment was to visit a local establishment and evaluate it for handicap accessibility.  He probably wishes he would’ve left me at home.  Not only because I didn’t buy him a thing, but because he forgot how much of an “out of the box” thinker I am.   I had him taking more notes than he takes IN his Master’s class!

The establishment we chose was the local Belk department store. It is the only department store we have here in town, so it keeps a steady stream of business.  According to some statistics I found, a staggering 24.5% of our county is listed as having a disability.  So, I think it is pretty important for our businesses to be accessible to all of those who have disabilities.

But what does accessible mean?  When people think of “handicap accessibility“, they usually think of people in a wheelchair.  But what about those people who have a disability but don’t need a wheelchair?  Some disabilities require a cane, a walker, an assistance dog, or a simple chair/bench to sit down and rest for a bit.

The first thing I noticed during this visit WAS wheelchair related.  There were quite a few handicapped parking spots up close to the door, which was good.  BUT…because I’ve had some experience with loading and unloading wheelchairs, I also noticed that the parking spaces were the normal size with no little yellow striped zone to allow extra space to unload a wheelchair.  So, if you parked with a side-loading van lift, you’d either dump the wheelchair into the row of bushes or into a car.  Hmm, not very practical.

The next thing we noticed was the little sidewalk entry for wheelchairs/walkers/strollers/carts. It was made of bricks that looked like Legos, with all those little bumps on top!  It’s not easy to push a loaded wheelchair, stroller or a cart, let alone push it up an incline made of bumpy bricks.   I imagine it would be the same story for someone using a cane or walker.  Those bumps would just get in the way and may cause more injury. I’m not sure what these people were thinking when they put in bumpy bricks but I was feeling a little pessimistic already.

But then things started getting better.  The entry way was a double automatic door, which got a “double” a thumbs up because it actually gives a person some space to get in and out!  In between the two entrance doors, we spotted a courtesy wheelchair, which was another thumbs up for me.  There are people I know who don’t need wheelchairs on an everyday basis, so they don’t own one, but when they get out and about, they find they need one.  So a courtesy wheelchair is always a great thing to have available.

Feeling adventurous, we grabbed the wheelchair and my husband (who is also a  football coach) pushed me through the aisles as if I was the football he was rushing into the end zone before someone could tackle him.  I held my breath, shut my eyes and prayed quietly to keep from screaming, but when we stopped and I opened them, I realized that we made it clear across the store!  To my surprise, the wheelchair actually fit down just about every aisle. There was one aisle that had a ladder in it, but it was easy to maneuver around to the other side of the ladder.  Once I caught my breath, I started feeling a little more optimistic. We returned the wheelchair and headed towards the bathrooms….. where things got rough again.

Bathrooms are always difficult to “pass with flying colors” in my book.  For starters, the signs usually only have braille on them about half of the time.  I guess those with sight impairments don’t have to use the bathroom. Of course, I can see rather well and sometimes I have trouble figuring out if I should go in the door labeled “Blokes” or the door labeled “Sheila” at Outback. Sigh.

Anyway, moving on.  Then the door itself is usually an issue too.  Very rarely do you see a bathroom door that has a automatic “door open” button.  I grumbled to my husband about how this should be mandatory at all facilities in order to be accessible for those with walkers, strollers and wheelchairs. He looked confused.  So I had to demonstrate with my “air walker” what I really meant.  It is NOT easy to push a (sometimes heavy) door, maneuver a device AND keep your balance without bumping into someone who is coming out the door.   My heart is happy when I see facilities that just eliminate the door all together and have a small “maze of walls” that leads to the restrooms.

So let’s say you manage to get in the door, or get lucky to find a place that doesn’t have a door.  Well, you are usually “home free” then because most places have the handicap accessible bathroom stall.  However, most people never even notice that most places are missing a lowered sink.  This isn’t just an issue for those in wheelchairs.  Some of those sinks are REALLY high for children to get to to wash their hands too.  Then you have the mom who stands and lifts each of her seven kids up to the sink to wash their hands.  Or she just breaks out the hand sanitizer on the way out the door.

Sigh.  Speaking of mom’s.  You know how most restrooms have a baby changing area?  Yeah, those are great, except for this one.  It was RIGHT in the way of the door.  So when it was down, no one could go through or come out.  Not very convenient.  But my other issue with these is that they have a weight limit.  What happens when you have a large child, or even an adult who needs to be changed?  I have seen ONE place that had a “Changing Counter” to allow for that.

Okay, I think you get the picture of why bathrooms never really get a thumbs up from me!  We finished up and my husband was getting anxious to leave, but I wasn’t done.

As we walked through the store, I noticed that besides the shoe department, there wasn’t a single place to sit down for those who may just need to rest.   Not even at the fitting rooms!  Chairs are such an easy and relatively cheap fix.  Considering the number of  people these days with fibromyalgia or arthritis that  need that short break so they can continue to enjoy their day without regretting it later, you’d think that even a small department store in a small  town would have some chairs!

And finally, what may be the most important aspect of being “accessible” — the employees.  Some facilities may not have everything someone needs, but friendly and helpful employees go a long way.  They may be able to find a chair for someone to sit down in.  Or they simply smile and repeat themselves to those who are hard of hearing.  They can move things around for those in a wheelchair or a walker.  They can lend a hand in opening that heavy bathroom door.  They smile as a person and their assistance dog walks by rather than scoffing and yelling about a dog being in the store. Friendly employees really go a long way.

People who don’t have disabilities don’t think of accessibility issues until the issue is staring them in the face.  How do we train employees to be understanding in a world that wants to criticize and condemn? How do we educate people in a world that would rather be ignorant because it is “easier”?

A disabled person’s limitations and accessibility issues usually go unnoticed because the person in the situation doesn’t have the energy or the confidence to ask (or demand) that organizations do something to help them have easier access.    How many people do you know who would rather just stay home than worry about making a scene somewhere?  I know far too many.  How do we build confidence in those around us who have disabilities to fight for their rights?

More importantly, how do we get businesses to think about these things before the “fight”? Organizations usually do only what the ADA requires and don’t think anything else of it.  While I think the  establishment we visited did well compared to some other establishments in town, there is still room for improvement EVERYWHERE.  But how do we push for that improvement in a day when so many organizations are looking for ways to cut costs instead of increase them?

The only answer I can come up with is this —  Stand up for yourself and those around you who are disabled. If you are blessed to be without a physical impairment, start thinking about those who you know who do have impairments while you are out and about.  Would they be welcomed into the store with their assistance dog?  Would they be able to easily maneuver around the facility?  Would they be greeted by friendly employees and treated with respect?  If the answer is no, then speak up.  Let someone know.  There is no need to make a scene, but simply let our voice be heard…. one voice at a time.

By the way, my husband got a 100% on his paper that week.  So maybe he didn’t regret taking me after all!

Kacey A.

When One Makes a Plan to Quit Church…

harpers-ferry-october-2008-sitting-at-river

God has a wonderful sense of humor I believe.  I’m quite certain that I make Him laugh out loud on occasion, as I can be funny even without trying. (I’m NEVER funny when I DO try!)  I also imagine that He has rolled His eyes, chuckled with minor annoyance, and wished He could THUMP me on the head at times as well.

This past week I had a couple of serious discussions with my husband about church.  I had a “plan” about when I would no longer be attending church.

I’m getting ahead of myself, however, so let me explain how all this began. I had begun consciously thinking about what I would no longer do once my kids were gone from home.  What started all this (dangerous) thinking was my epiphany of how different fixing supper each night would be after it became “just Terry and I”.  I have a “soon to be 18-year-old” son, who eats like most 18-year-old boys.  He actually eats very healthy… but he eats a LOT.  So while fixing supper one evening, I realized that I would go from baking six chicken breasts to baking just two chicken breasts in only a couple of years!

Well we all know how one “thing”, or one “thought”, can lead to another.  Before I knew it, I realized that I was thinking about how I was going to have to explain to Terry why I wouldn’t go to church with him anymore.  I hated to have that conversation, for I didn’t have a plan to stop going as a result of my losing my faith, anger at God, or a back-slidden spiritual condition.  I felt badly for Terry, because he would have to go alone.  And yet, it never entered my thinking that he shouldn’t be going alone.  It’s as if the decision had already been made.

I really love our church, and our pastor is a phenomenal pastor/teacher.  The couple of things I’ve discussed with him about people with hearing loss were always met with approval and a very genuine desire to help.  Churches are exempt from the Federal law (ADA) mandating that assistance dogs be allowed to accompany their partner with a disability. Chloe has always been welcome at my church. But…

I am invisible at our church.  I come in and a couple of people say “hello”.  I then go to sit down, make Chloe comfortable, sing/sign with the congregation, listen attentively, pray, sit around and wait for my family to finish their “clean-up”tasks, and then we go home.  I’ve actually written and then deleted a couple of paragraphs here explaining the different ministries in our church and why I can’t participate (or how I “tried” and it failed… believe me there were numerous attempts!)  I’ve chosen to not add that in this post because, 1) I don’t want anyone to think I’m being critical. I feel harbor no ill feelings towards any ministry or individual, and 2) the purpose of this post is to explain God’s intervention and how He’s made it clear I cannot deliberate whether or not I should attend church.

So in order to keep this from being “novel length”, let me cut to the chase.  I walked into church Sunday and went to my “spot” in order to sit invisible.  God sent three different people over to me that did more than say “hello”.  They asked how I was doing, what was going on in my life… He even allowed me to offer prayer and encouragement to someone needing to know that someone would honestly “pray without ceasing” for her.

I went from sitting “invisible“, to sitting “surprised”. Chloe kept looking at me funny, so for all I know my mouth was even hung ajar in shock. Yes.  At times God chooses to reach down and “thump” His younguns on the head.

In preparing to write this post, I was reminded that one thing many late-deafened people have in common is the trap of a self-imposed isolation. I’ve been to conventions, conferences, and support group meetings.  I’ve even spoken in workshops, research symposiums, and on Capital Hill. I should know better. Yet… I am just as much in danger of allowing myself to simply “drop out”, as someone new to hearing loss.  Why?

Perhaps it’s because “all of this gets really old”.  Or maybe we wonder if we are making a difference to anyone? My messed up thinking had me convinced that I go to church now because my kids care if I do. I didn’t have to twist my own arm or anything to convince myself that after THEY are gone… no one will notice ME gone.

I say all of this in order to remind all of us, that God can use anyone.  He can use the deaf, the blind, and those with mobility challenges.  He can use the hyperactive, the extremely shy introvert, and those who do not have “traditional” spiritual gifts or talents.  In the meantime, my involvement remains at  simply being able to faithfully pray. It’s very likely something I do better than most. I disconnect my cochlear implant, and instantly eliminate all background noise and distractions.

I think the late-deafened get bogged down in what they “use to be able to do”.  When I could hear I was in the choir, taught 2nd grade boys Sunday School, led two women’s Bible studies, worked in the Deaf Ministry (how ironic!) and acted as a secretary for the Children’s church.  I can’t let what I use to be able to do, keep me from finding joy in what I can do now. If the bulk of what I do happens to be ministries outside the church, it doesn’t mean that I should no longer go.

Don’t allow yourself to believe “church” won’t miss you. In the end, that’s not the point of “church” is it?

Denise Portis

© 2008 Hearing Loss Journal