There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).
I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.
“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.
Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).
This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.
We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.
L. Denise Portis, Ph.D.
2022 Personal Hearing Loss Journal
Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.
University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/
Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.
Gotta say, I’m so grateful for being late-deafened in 2019.
I realize much of the reason I am grateful is that I have access to a great number of “first world technology”. I “hear again” with a cochlear implant. I have apps that caption speakers if they are within 6-10 feet of me. My hearing aid and cochlear implant are bluetooth compatible so (for example) using the GPS in my car, Siri tells me where to go (ahem) in my own head and it doesn’t bother anyone else in the car.
I have super cool devices to clean, dry, and care for all my hearing assistive technology. I have volume controls, fire alarms with strobes, and captioning on my television. I speech read at about 45-47% accuracy (which is actually pretty high but I credit it to teaching others how to do so in workshops, etc.). I can make doctor appointments online, and my home phone (Google voice) sends me an email transcription of every message left. I text like a pro and rarely have to knuckle down and actually phone anyone. My calendar and alerts sinc with my Apple Watch so my whole wrist vibrates when I need a reminder. I can order online, bank online, and renew my service dog’s insurance online. I definitely live in the right day and time, in a first world country, where even “middle class” I enjoy a host of perks that make being late-deafened, not so very bad.
Do you know the #1 pet peeve that happens to be very low tech and low cost, is the fact that no one wants to use a microphone?
I do pretty well in groups of 10-15 or less, sitting around a table so that I can see everyone, and everyone is polite and speaks one at a time. Put me in a room with more people than that, or people sitting in rows and spread out, and I really struggle. I may get 50% of what is said. You might be thinking “what does that mean?”. Please allow me to clue you in.
50% doesn’t mean in a 40 minute presentation or workshop that I received and understood the first 20 minutes.
This means that I get very little take-away. If I’m hearing 50% of what is being said while it is being presented and spoken, I am actually missing much more than that because of lost comprehension. Think about it this way.
If I read aloud a paragraph to you and dropped 50% of the words randomly, would you understand ANY of the paragraph at all? Even if you are hearing 50% of the words, you’ve lost the context and have very little understanding of what I just read.
2. 50% means my frustration level is high and my fatigue has ruined me for the rest of the day.
If I could burn calories by struggling to hear, comprehend, and communicate effectively, I could eat whatever I want, whenever I want, and never work out for the rest of my life. When you tack on the fact that my primary issue is a balance disorder and not the hearing loss, when the latter contributes to fatigue this increases my chances for wobbles and for falls. I have left meetings where people refuse a microphone and seriously put myself in jeopardy the remainder of the day because my brain became mush.
3. 50% means more work for other people.
I work at a college and am a valued member of the psychology department in spite of my adjunct status. After meetings or workshops where I get my 50%, I have never EVER been turned down by colleagues after requesting a follow-up email with a copy of the PowerPoint they used, a summary of their talk with major points highlighted, and any pertinent questions asked by others (that I didn’t hear at all) and responses given. I work with good people. People who care, who are inclusive, and frankly are all about social justice issues like accessibility.
So… if people were simply using the freaking microphone:
My comprehension goes to 80-90%
I expend the same amount of energy a hearing-abled person expends to attend a meeting or workshop.
No one feels compelled to send me copious notes about what they just covered.
I am included… not just in the meeting, but because I will be hearing questions and responses from the floor. I will feel comfortable speaking myself because I know what is going on in the meeting.
Other people with “normal” hearing, actually hear better. Speakers who use microphones are more likely to face the room/audience, speak more clearly, and not cover their mouth or faces with hands, fliers, etc. (Tidwell, 2004).
Having experienced good hearing/comprehension environments, imagine my frustration when I cannot hear and there is a microphone available that someone refuses to use. I have had workshop speakers decline microphone use, college presidents and vice-presidents, and TFO constituents. I have experienced county executives, politicians, pastors, graduate and residency doctor/teachers refuse to use the microphone. From the perspective of someone with hearing loss, this hurts y’all. It also pisses me off. (Jus’ sayin’)
“My voice carries, so I’m not going to use this” (points to microphone).
“I walk around a lot so I’m not going to use the microphone. I have a loud voice” (Note: most microphones are mobile).
“Can everyone hear me? I have a big voice. I’m not going to use the microphone… because everyone can hear me, right?” (while ignoring my wildly gestured hand-waving negating their statement).
Folks, volume ≠ communicating well. Raising your voice (your volume level) distorts your voice (Ardon, 2019). If you use a microphone and use a normal tone and volume because the microphone is doing the work, your words are understood by more people. The quality of your speech improves when using a microphone. You aren’t having to remind yourself to “speak up” so the people in the back of the room can hear you.
This post isn’t about any frustration about not hearing well when a microphone is NOT present. (Although as I continue positive advocacy, I work to have more and more microphones available in meeting and workshop venues). I simply want to remind folks to use the microphone when it IS THERE and IS AVAILABLE. Not using it tells me that I don’t matter… that anyone with any level of hearing loss doesn’t matter. (NIDCD reports that 15% of all Americans over the age of 18 have hearing loss. That number goes way up if your audience is 40 years old and up) (NIDCD, 2019). Even in small meetings, the number of people who benefit from a microphone in use goes way up. Present are people with hearing loss, auditory processing issues, ADHD, and folks who do not speak English as their first language. Please… use the microphone.
For all of us who want to be included, thank you in advance.
My granddaughter Samantha Jean just turned two-years-old. Samantha is at the stage where she has opinions and expresses those opinions. These opinions vary from what she wants to wear today, to what she wants to eat, to what she wants to DO, and what she wants you to do. She is just full of opinions. She also is very independent already.
“I do it!” After caring for her a couple of weeks while mama was in the hospital having her baby brother (rather early), this phrase quickly made its way to “Samantha’s Favorite Words” list.
I had to learn to let her do it, even if I wasn’t happy with the results when she was finished. Thankfully, since she is only 2, I was able to distract her to “fix it” or wait until she moved on to another activity and straighten, organize, or re-do the activity to my satisfaction.
(Yeah. I’m a little OCD and a bit of a control freak!)
What I love about Samantha, is that unlike many two-year-olds, if she was NOT able to do something she rarely had a meltdown about it. I was amazed at the first time she asked me for “halp”, and graciously stepped aside to let me do it.
I heard these requests for “halp” for numerous things:
When trying to stick her head through an arm hole instead of the one designated for her – ahem – HEAD,
When trying to get blueberries to stay on her spoon,
When trying to safely navigate the steps on the back porch which were a bit too much for such short legs,
When her train rolled to where she couldn’t reach it underneath the buffet,
When trying to read a book,
When trying to get up on some of the furniture, (see photos)
Sometimes Samantha would ingeniously choose a way to do something differently so that she could stay independent in the activity. For example, if there was something for her nearby she could use as a means of boosting herself up on tall furniture, she might drag that toy or bench close to use it to navigate her destination without “halp”.
She cannot manage “Grandma” yet so she calls me “Geegay”. I figure she will get there so I think the latter is awfully darn CUTE. I loved hearing Samantha say, “HALP, Geegay!” throughout the day. She more often did things without assistance, but never hesitated to ask for help should she:
Figure out she really did need it to accomplish what she wanted to do.
Was too tired to find an accessible means to accomplish it on her own, or the effort wasn’t worth the “gain”.
I had to admit while living with her, I saw the lesson to be learned again and again.
Stubborn People with disABILITY
I realized the other day that I have lived with disABILITY longer than I have lived without. The feeling was strange since I had simply shouldered new challenges and practiced “keep on keepin’ on” while aging. People with disABILITY (congenital or acquired) often find that as they age, accommodations that were once enough to give them access to an activity or opportunity, no longer are enough. Perhaps even accessibility tools, electronics, devices, etc., may have once allowed you to be independent in a task but as you age you find those things are not enough to be completely independent.
My life with a disABILITY started at the age of 6 with a traumatic brain injury, broken bones, and destroyed hearing in the left ear. After a long recovery, I never felt like a person with a disABILITY until about the age of 18 when my hearing loss became bilaterally progressive. I eventually acquired Meniere’s disease (a vestibular disorder) and really began identifying as a person with a disABILITY at the age of 26 or 27.
I have a good friend who describes herself as “bilaterally hearing-impaired”. Because we are both currently training our third service dog and work at the same place, we often train together. One thing I love about hanging out with Jessica is that she always asks if she can do something for me. Whether it is to get the door for me, pick up something I’ve dropped, carry something for me, etc., she always asks first. She doesn’t assume I want her help, she thinks to ask first in the event her assumption I need it is unwanted or not needed.
Sometimes I say, “actually Finn has been working on door buttons, let us see if he will get this door open for us”. Perhaps the item I dropped is something my Golden puppy can safely work on his retrieve and get for me, so I will let her know that Finn and I have “got it handled” and no “halp” is needed. After training together for some time, Jessica once replied to my “no thanks we’ve got this” with a very thoughtful reminder.
“No problem. However, we know each other well enough now that I trust you to let me know when you need help and that you will ask for that help”.
The first time she interjected this reminder, I found myself thinking about it the rest of the day. Can you guess why? It is simple really. People with disABILITY can be pretty stubborn, and never ask for “halp” when they really need it. We can even earn the reputation of being ornery about our refusal; ungracious in both word and attitude.
In my early adult years of learning to live with deafness and balance issues, I adopted a rather unattractive and even dangerous attitude of “I am woman. Hear me roar!” This could be interpreted as, “I don’t need help. Leave me be. I’ve got this. Don’t you dare pity me!”
The only reason I can think of that I acted with such vehement, even arrogant refusal is that I didn’t want people to pity me. I also did not want them to think that I was UNable rather than differently-abled. I think that all changed for me when I realized how it made ME FEEL when I asked to assist someone who needed my “halp” and they refused. After realizing I felt “robbed” and even hurt when denied the opportunity to help someone that I cared about who obviously needed my “halp”, I started re-thinking my own stubborn refusals.
I have lived with the assistance of 3 service dogs now. Even so, there are things my canine partner cannot do for me, or cannot do SAFELY on my behalf. I have learned to ask for “halp”.
I have never, EVER been turned down. Even should I ask the most cantankerous-looking curmudgeon in the aisle at the grocery store to get the 32-ounce can of turnip greens on the bottom shelf because a) I can’t bend down and get it, and b) the circumference is to large for my Golden’s mouth, I have never been told NO when asking for “halp”. (Hey we love our turnip greens in this house! I lived in the South a loooooong time).
Solutions to World Problems
Surely a solution to the world’s problems is to simply be kind to others. We all know that isn’t going to be the norm, however. Still, individually we can do our part and hope (even pray) for a ripple effect.
In every way that YOU can, make a difference.
If someone needs it, “HALP” them. Do it with a smile and without conditions. Do so easily, readily, and without any need for acknowledgement. Be the kind of person who so naturally sees a need and meets that need that it becomes who you are and not what you do.
It is always good to ask. Never assume that someone who appears to need help, wants your help. Maybe they have some assistive device that will allow them to pick up that item without “halp”. They want to be independent.
Don’t be a stubborn jackass. If you need “halp”, ASK. If someone asks if they can “halp” and you simply need a few minutes to do it yourself, explain that graciously. Don’t become haughty and retaliate with angry words and threats about where you are gonna hit them with your cane. Don’t tell them what to do with their request to “halp”. (Ahem)
May I share something with you that you already know?
Even able-bodied people need “halp” sometimes. Whether it is assistance with a task, or a needed hug at a low moment, all of us need each other. The next time you need assistance for “halp”, just ASK already!
Even my two-year-old granddaughter will ask for my help when she knows she needs it. She even does so when she recognizes that she can do the task, but that it will get done quicker and with less effort if she simply asked for HALP.
Pogosyan (2018) provides multiple reasons why we should be willing to help and accept help from others. “Research has found many examples of how doing good, in ways big or small, not only feels good, but also does us good” (para. 2). So in closing, I would like to remind you (and yes myself as well) that disallowing someone to assist actually robs them of the benefit gained from that help.
Pogosyan goes on to explain that, “One reason behind the positive feelings associated with helping others is that being pro-social reinforces our sense of relatedness to others, thus helping us meet our most basic psychological needs” (Pogosyan, 2018, para. 1). In a very powerful way, it supports our need for EACH OTHER.
I’m starting to think this world is just a place for us to learn that we need each other more than we want to admit. – Richelle E. Goodrich
Our greatness has always come from people who expect nothing and take nothing for granted – folks who work hard for what they have, then reach back and help others after them. – Michelle Obama
As a person with disABILITY, like any within a diversity group, I have experienced harm from words. Before you stop reading and think I’m going to blast the abled population, let me just say that people with disABILITY are often the worst offenders.
If I asked every person in the world to throw up their hand if they have experienced words that have…
made them wince (inwardly and outwardly)
caused a “hitch” in your breath because of the unexpectedness
made you cry
made you SWEAR
caused you to “shut down”
forced you into isolation
triggered you to “fight back”
or scarred you for life…
… the sudden uplift of hands worldwide would cause a major shift in wind currents and likely tilt earth off its axis. Seriously. We’ve ALL experienced this.
I use the phrase “experienced words that have…” intentionally. Not all of us HEAR well and many who do hear well don’t listen well. The damage of careless and mean words is not something simply heard or speech read on the lips of fellow human beings. The words are EXPERIENCED. This experience is why damage is done. We take it in. We stew on it. We watch those words ping-pong back and forth in our brains and hearts like a pinball machine, drawing blood and causing wounds from every “hit”. We are scarred.
When my children were younger I would remind them that human beings can FORGIVE but we cannot FORGET. Our words have such power – it’s just freakin’ scary! I am an impulsive speaker. I say things without thinking through and that impulsivity causes regret more times than I can count.
People have told me things before that I needed.
Perhaps I was being a butt-head and careless with my own words. They put me in my place. Maybe it hurt but it was a disciplinary kind of hurt and I walked away wiser and un-scarred. (By the way, all of us have people in our lives whose very positional relationship with us allows them this power).
People have given me true (heartfelt) constructive criticism. This means the intent was clear, precise, and helpful. I am sensitive enough that even this at times can be hurtful, but it doesn’t WOUND.
Those types of experiences can hurt… but they aren’t spirit-murdering (a new word I learned at an Anne Arundel Community College workshop this week). I would like to argue that CARELESS words are never EVER helpful.
The word itself means, “not giving sufficient attention or thought to avoiding harm or errors”. Careless words can be both intentional and direct. They can also be unintentional and “oopsie” moments. Either way they hurt. They wound. They leave scars.
At the end of the semester a handful of students were sticking around to chat after the final. They were lovin’ on Finn, my 3rd service dog in training (SDiT),
… and just “messing around”, hangin’ out, and talking. One of my students muttered something and *I* (emphasis on that I, for I am deaf – grin) heard the collective indrawn breaths. So…
I nosily asked, “what just happened”?
The student said, “Good God, did you hear what I said?“, acting both horrified and astonished.
“Well, no,” I replied, “but I heard y’all’s REACTION”.
Her eyes filled with tears and she admitted, “I said something contradictory and stupid and then said, ‘GAWD that was bipolar of me'” She then slapped her hand over her mouth and looked around at the group with big eyes. The group all immediately patted her back and assured her that “we ALL say stupid things”, and “we knew what you meant”. She vehemently waved all their support aside and said MUCH louder…
“No, NO. You don’t understand! I AM BIPOLAR. I just slammed myself!”
At this point, the floodgates opened and she was sobbing hysterically. It was contagious… of the 8 students standing there, five of them were in tears within minutes!
Do you know they stuck around for another 20 minutes and discussed the power of words and stereotypes? I just stood there in awe watching what I hoped was a little bit of my teaching rubbing off as they expertly dissected and dialogued about intent, carelessness, and harm.
You are gonna spew careless words. Whether you speak with your voice or your hands, you are going to speak before thinking. Or… maybe you speak AFTER thinking but you simply don’t care about the damage you are unleashing.
Own it. If you care, if you want to minimize the damage, if you want to do better, if you are the kind of human being that understands the power of words, OWN IT.
Apologize if needed (and mean it)
Strive to do better. Vow it!
Call it (when appropriate) when you see others do it
This last one I have learned the power of this conscious decision to OWN it by following up with a note. Whether it is a handwritten note, an email or text, etc., writing down a follow up with a person I threw careless words at is so important.
It becomes this tangible, concrete evidence of my regret and promise to do better. The injured party can re-visit it if they want. It may act as a future means of measurement to them about how far I’ve come in using words as weapons. For me, it acts as a literal pivot point from which I can measure my own growth, my own practice of intentional, encouraging communication.
Next week, I want to discuss how one goes about admitting and voicing that “ouch! that hurt”. If careless words can injure, we are all wounded warriors. What do you do or say if someone hurts you?
For a former “farm girl”, I recognize it goes against the grain to say I HATE RAIN.
Besides… I don’t HATE rain, I hate the consequence of rain.
Not the consequence of providing necessary water to growing plants.
Not the consequence of washing the world clean.
I hate the consequence of navigating a rainy day. It promises bruises, headaches, falls, and sudden yelps and “CRAP, woah!” exclamations.
The irony is not lost on me that although I am profoundly deaf (when not wearing my cochlear implant),
although I have post concussive syndrome from numerous falls,
although I have a bum ankle that I badly sprained 4 years ago and wish to God I had broken instead,
… Meniere’s disease is the battle for which I must “don the cape”. Something that falls into the “invisible illness” category. A disease/disorder with no cure and few agreed upon symptom smashers.
Meniere’s and weather changes are incompatible. On bad weather days I sometimes have to psych myself up and recognize that I cannot change the weather today and I cannot cure my Meniere’s. What I can do is “don the cape” and make the best of it.
Today I had my heart set on going to training at Fidos For Freedom, Inc., the organization from which I received both of my service dogs. My current service dog, Milo, loves going and the extra practice does us both good. I usually don’t wave the white flag on a day until I actually get up and go look at the sky. Lord knows, our weather forecasters are not very accurate about a “3 day” or “5 day” outlook. (Super strange that it seems the m0re technology available to us, the more meteorologists miss the forecast). I usually know it’s raining outside as soon as my feet hit the floor. I certainly cannot hear it <grin> as I don’t “have my ears in yet”. This morning I knew as soon as I swung my feet out of bed that it was raining. It’s fairly easy to guess when the entire room is spinning and the floor seems to be missing under my feet.
I always start out strong. I CAN DO THIS. I let the dogs out and start my coffee. Something I do each and every morning. No matter that I am doing it while hugging the nearest wall or counter.
I didn’t sink to the floor this morning, sobbing, after letting the dogs in for breakfast. I hung on to the chair rail molding on the wall and shook, said a few choice words, immediately asked for forgiveness and pled in genuine prayer to help me let go and walk to the kitchen. I’ve learned that caving to the despair only exacerbates my symptoms.
So I’m not going to Fidos For Freedom, Inc. today even though Milo-bear is looking forlornly out the window wishing we weren’t at home.
Please do not misunderstand this post. I’m not looking for sympathy. I am not inviting you to my pity party. I simply want to share what it is like to live with a chronic, invisible illness. It might also surprise you that I am glad
… at peace with having this disease. If I did not have Meniere’s disease, I know that I would not have the heart and passion for people who live with invisible illness. When I am the one tagged to produce a post for “Hearing Elmo”, I do not do so from the keyboard of an expert. I don’t have the answers. I don’t have anything profound to share today.
NOTE: Like to write? Want to share your journey? Hearing Elmo welcomes guest writers!
Instead I can salute and encourage all who must “don the cape” and simply make it through today. Overcoming one hour at a time and making the best of it. Shauna Niequist said, “… what I can do is offer myself, wholehearted and present, to walk with the people I love through the fear and the mess. That’s all any of us can do. That’s what we’re here for.”
We are super heroes because simply “overcoming it” is our default and salvation. It’s not always pretty and I don’t always “rock my cape” with grace, drive, and power. Sometimes I just feel pissed. But…
I’m overcoming it. I’ve had practice. I’ve got this.
And friend? So do you.
Nope. It ain’t easy. You can overcome it. You have before. You will today. “Don the cape” and get through today.
Townsend version of Aesop’s Fable: The Crow and the Pitcher
A crow perishing with thirst saw a pitcher, and hoping to find water, flew to it with delight. When he reached it, he discovered to his grief that it contained so little water that he could not possibly get at it. He tried everything he could think of to reach the water, but all his efforts were in vain. At last he collected as many stones as he could carry and dropped them one by one with his beak into the pitcher, until he brought the water within his reach and thus saved his life.
Moral: Necessity is the mother of invention.
I have the privilege of hanging out with numerous people with disability. Some are students, some are colleagues I work with at Anne Arundel Community College, and some are individuals I know from various community advocacy groups. One thing I have learned about people with disabilities,
“Where there’s a will… there’s a way”
This “will” is what this Aesop’s fable of the Crow and the Pitcher reminds me of as I have seen time and time again, people with disabilities finding a way to accomplish what they need to do with whatever means available to them and within their own power.
I was walking towards an “accessible” bathroom with a young woman who self-identified as a “little person”. I normally have a rolling briefcase trailing from my right hand and a service dog in heel with the leash in my left-hand. As we approached the bathroom, I readied myself to disengage myself from my rolling briefcase and pull the bathroom door open. Before I could do so, the student yanked one of her textbooks out of her book bag, stepped up on it, and pulled the door open. She held it open for me and never missed a beat… continuing to talk about what we were discussing on the way to the women’s bathroom.
I, myself, do things that I have simply learned which allow me to be independent. However, this example stuck with me a long time. The young woman was accustomed to doing this and obviously had practice. The young woman’s “normal” reaction was an expectation to do something NEW and NECESSARY to accommodate her need.
Another example: One day on campus as I was preparing for class, a student whom I have met only in the hallway a few times after exchanging a cheerful greeting, poked her head in the door and waved at me. This student uses a wheelchair. I walked over and realized the issue before she even opened her mouth. Right outside this classroom is a CRAZY women’s bathroom that has an entrance that is impossible for any person with mobility issues to get in and out of without assistance.
“Need me to get the door?” I asked.
“Yup!” – “Thanks!” she whispered with a knowing grin.
Later that week I saw her in the hallway again. This time instead of only a cheerful greeting in passing, she stopped me and told me thank you again. Even though the other bathroom on the third floor where we were was more accessible, it was much further from her class and she lacked the time necessary to go down that far to avoid being late for class. I explained to her that I had to have help with this particular door too if I had my service dog with me. We both giggled at how ridiculous it was that we required assistance for that bathroom. (Do you know I still don’t know her name? Comrade in arms, but clueless as to who she is – smile). The day I got the door for HER, my service dog was waiting patiently behind me in the classroom so I was able to assist without any hoopla or drama.
Just in case you are not a long-time reader of Hearing Elmo, I have Meniere’s disease (a vestibular disorder) and “hear again” with a cochlear implant. I also have post-concussive syndrome. I have made numerous adjustments and changes within my home, car, and office to eliminate my need for assistance. Since I can’t raise my hands over my head without swooning, everything I need in the kitchen is on a shelf I can reach safely. My shower has everything I need eye level instead of up higher on the rock-faced shower wall. I have chair-rail molding all over the house so that I can grab it with my fingers if I am walking and get wobbly. All my appliances and drawers that “stick” have a tug on them so that Milo (my service dog) can open them for me. I could go on and on, but I don’t want you to miss that the reality of ANYONE with disability or chronic illnesses, is that they are accustomed to doing whatever it takes to be as independent as possible.
Please Keep in Mind
Will you do your best to remember one thing? If a person with disability, chronic illness, or invisible condition asks you for assistance, you are their LAST resort. They have thought of and planned for everything that they can to be as independent as possible. However, there are times that we just need help.
Don’t make a big deal about helping, just do it calmly and with grace.
Don’t discuss the details or “unfairness” of the person needing your assistance unless THEY want to discuss it.
Don’t feel sorry for us.
Don’t be super dramatic and bring attention to the issue.
Where There’s a Will, There’s a Way
Earlier I stated, “where there’s a will, there’s a way”. If you live with disability, chronic illness, or visible/invisible conditions, I understand when WILL disintegrates. I work as hard as the next person with disability to be independent and strong. Yet… there are times I just throw up my hands and yell, “SCREW this! I give up!”
I cannot speak for others because we are all SO different. Even people who share the same diagnosis may:
Have different symptoms
Take different medications
Have different responses/side effects to those medications
Have more support than you do
Have less support than you do
Have a different personality style and traits
Have a different developmental history than you do
Have different faith practices than you
Have different co-morbid diagnoses (Other conditions in addition to their primary challenge)
Have cognitive issues as well that impact problem-solving
I can say that for ME, the best thing I can do after having a “Screw this” kind of day, is to go to bed. And yup… I mean I do so even if it is only 5 PM! I always feel better, have a clearer head, and a renewed WILL after getting some rest.
I am really tired of being TIRED after having to find and produce my own accommodations for various activities. However, a fresh perspective (after a good night’s rest) nearly always renews my inner warrior and allows me to face a new day willing to do whatever I need to in order to be a thriving, surviving disability advocate.
In the comments, I welcome other examples of how you have learned to make things accessible for you.
Warm hugs and virtual “high 5’s” to my fellow differently-abled people!
It is always a treat when guest writers post for “Hearing Elmo”. I never wanted this blog space to be all about “me” and my own issues. Please let me know if YOU would like to write for the site!
Deb has been a friend for so long, I would have to stop and burn calories just to remember the when and where we first connected. I love her like a sister and her presence in my life has been a blessing. Deb writes (click the photo above to visit her blog) and is a photographer as well. As a matter of fact, I re-designed my guest bath around her dragonflies. A loving “welcome back” to my friend, Deb, as she shares some things that many of us with disability, chronic illness, or special challenges deal with on a daily basis.
From the time I was in elementary school, I understood that life is not fair, that it’s not even a question of fairness, and that readjusting one’s perspective is something that must occur for the full expression of the self, time and time again.
Of course I didn’t think of it in quite those terms when I was 6, 8, or 10 years old, but I experienced it. I imagine we all do in one way or another, whether by subtle shifts or dramatic events that leave us no choice but to consider this a reality of being human.
Here are a couple of examples. Each of us has some of our own.
-That moment at the audiology clinic, age 9 or so, where I went every couple of years for a hearing test as there is hearing loss in my family. I heard someone say, looking at the audiogram: there it is, the mild to moderate hearing loss. I didn’t know how to read the graph at that time, but my maternal grandmother was hard of hearing and I understood it from that vantage point. I would be like grandma, hard of hearing. Reading lips. I didn’t understand that I would lose the ability to hear birds singing, or the many nuanced experiences that we take for granted when we are able to hear, but I was able to internally adjust to my reality.
-A different moment, after a terrible event at home. I went out into the yard, in the dark, in winter and lay on the snow-covered grass. I looked up at the clear sky, full of stars, and as my breathing slowed to a normal rhythm, thought how beautiful it would be if I could just fall asleep right there…and never wake up. After a while, I felt something move me. You might call it God. I internalized it as a spirit of some kind. It said to me: No, it’s not your time. Stand up. Go back inside and warm up. Now I understand that as either depression, or self-preservation, or a little of both. I did not mention this to a soul until many years later.
In order to move forward after life-changing events, one has to be able to reckon with the forces within and without. I was motivated in the first example away from despair. As I looked towards my grandmother who could not hear, though it was beyond me at that age to recognize how small her world had become by that point in my life, I could see that she had her faculties and was loved by many in her circle, and so I had expectations of adjustment but did not despair. In the second example, in despair, I can’t say it was all me figuring out what to do, but had an experience that told me we can seek and find the resources to continue on.
Fast forwarding to today, I have experienced a number of life-changing events, some of which constitute frank disability. I have had orthopedic issues since middle school. I am now completely deaf without my cochlear implants. I am a survivor of mother-daughter sexual abuse, and with that came some episodes of physical and emotional abuse. I’ve experienced periodic vertigo since the occurrence of one of those physical episodes, when my mother, in a fit of rage I’ve never been able to parse out, pushed my 16 year old self backwards down a long flight of stairs. I only recall coming to at the bottom of the stairs, the crawl back up, the screaming that came from my mother’s throat that suggested that I was somehow at fault for my “accident”. I have struggled with (undiagnosed) depression for years. I’ve coped with physical pain for most of my life, with degrees of it varying over time. The most extreme of these pain issues resides in my facial nerve, with a diagnosis of trigeminal neuralgia.
Throughout each of my 53 years, I have found the will to continue on. Recently, I had to consider the prospect of foot surgery. Wanting to avoid it at all costs, I explored physical therapy, at the encouragement of an acupuncturist I see from time to time. My hope is still to either avoid surgery altogether or be better equipped to manage if I did. During my initial evaluation, I shared my vestibular/balance history. I had recently had the courage to tell my primary doctor about the trauma when I was 16, the vertigo, the neck pain, and now the increasing balance issues. It became clear at the first assessment that my vestibular system is in extremely poor shape. The physical therapist wrote “fell like a tree” in the assessment notes. I worked extremely hard both in therapy and on home exercises from September into December. While we made some modest gains on the foot issues, there was no progress on my balance issues. In December, my PT and I had a heart to heart. It is pretty clear that as a result of multiple factors, my vestibular system is not going to get better. I can continue to work on the vestibular exercises in effort to slow the progression, but that’s probably it. While all this was happening, my primary suggested I try a small dose of medication for the chronic depression, which I was forced to acknowledge, for the sake of self-preservation. We are working on finding a medication I can tolerate and which is a help to me.
It’s strange territory to be in this place where I feel more than a little bit at a loss. Where did my seemingly inherent sense of “carry on!” go? I’ve made adjustments all through my life, and did good works, and have had wonderful relationships and ending relationships and work and play and the same constellation of things that everyone else experiences in their own fashion. I wonder, though, who am I now? I have had moments of despair, when the thought that going to sleep and never waking up would serve me and everyone I know well. The only reason I feel strong enough to write this out in a semi-coherent fashion now is because I have begun to hear that spirit voice again, that says: No, it’s not your time. Stand up. Go back inside and warm up. To that end, I’m focusing on what my new life will look like, how to take the best care of myself possible, and how I can possibly continue to be source of support to others.
The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead phone in hand trying to figure out if I had charged it overnight — the night BEFORE — like I usually do. After hitting <rewind> in my head and backtracking over how my day BEGAN, I realized that I fished my smartphone out of my pocketbook before heading out the door this morning. That means I did not charge it last night. That means my iPhone lasted over 36 FREAKING HOURS! I was impressed. As impressed as I was, I STILL went and hooked it up to the charger. It was dead. It had to be charged.
As I fiddled around with the (stoopid) cord, (made difficult when you lack any kind of pincer grasp in your fingers), I thought, “Wow. My iPhone lasts longer than I do! I could never go 36 hours without being recharged!” And ya know? That made me a little sad.
My next thought was, however, “NOW WHY DOES THAT MAKE ME SAD?”
I hate that my default to what is normal for ME, is to feel sad about it or to apologize to myself and others. Why do we do this?
Well according to Wright (1983) and Nosek et al., (2003), people who are differently-abled and chronically ill, default to apologizing and providing unnecessary explanations and dialogue about their condition to smooth the way of acceptance. These same authors point out that this often backfires. We instead bring attention to something others may not even notice. Apologies convey regret over intentional or unintentional offenses or failures. Apologizing for needing a nap, needing to relocate to a quieter room, asking someone for a repeat, or request to stand closer to a wall to keep from toppling, is not something we should REGRET. It is not a failure. It is what it is.
I would argue that falling into the habit of apologizing for our “normal” creates a dangerous pitfall and trap that our disabilities or chronic illness are an undue burden on others. This could lead to becoming preoccupied with how hard you are making life for others. Russell, Turner, and Joiner (2009) found that individuals with disability or chronic illness already have a higher tendency towards suicidal ideation. Apologizing for something we are not responsible for only creates a perfect and toxic breeding ground for suicidal thoughts.
Putnam et al., (2003) explain that true independence and self-determination falls closely on the heels of acceptance… that can only take place when we stop apologizing for our “normal“. I use to apologize a great deal. In spite of using every piece of adaptive equipment I could find and afford, in spite of partnering up with a service dog, and in spite of reading everything I could get my hands on about positive advocacy and independence, I would still apologize for putting someone else out for helping me cope with a situation. I’m trying to do better. For example:
Instead of “I’m sorry. Could I get you to move over to that wall over there so that I may lean against it and have Milo (my service dog) on the left while we speak? I hate to ask you to move, but…”
… at which point they would say, “Oh, it’s no problem. Let’s move…” However, my apologizing for having to move infers that I had a choice. Apologizing makes it seem that I regret I am who I am.
I’m trying to learn to say, “I need to move to that wall over there for balance reasons. Let’s move over there and continue our conversation?”
… and their response would be, “Sure!”
I was in a super crowded common area once in which a colleague was trying to talk to me about something important. Not only could I not hear her, my balance was REALLY off and I stood there wobbling like a buoy. There were no walls available, and I was really starting to feel ill. I said, “I am having difficulty in this listening environment. Let me follow up with an email because what you are saying is really important to me“. They were pleased to do so and I think grateful enough that I cared to communicate WELL with them. I had to bite my tongue to keep from saying, “I’m really sorry about this…” I had nothing to feel sorry about so an apology would only have infused my confidence with negativity.
Yes, But FATIGUE is just EMBARRASSING
What if your (seemingly) undue burden on others is simply that you cannot keep up? Perhaps you need a mid-day nap to finish the day strong. Yorkston et al., (2010) found that differently-abled individuals USUALLY have accompanying pain, fatigue, or BOTH. We tend to want to apologize for this. We shouldn’t.
I have a friend with chronic (and sometimes debilitating) ankle pain. Mid-day she goes to her office and puts her feet up. If she has to go to a meeting, she unapologetically claims an additional chair so that she can rest her feet. I walked into a meeting once and saw she had her feet up on an adjacent chair. Someone walked by and said, “Are you saving that for someone?” She smiled, pointed to her feet, and said, “No. Bad ankles!” The person didn’t question her. They didn’t shoot her a pitying look. They also didn’t steal her footrest. It was a smooth and succinct explanation for her claiming an additional chair.
Several weeks later I ran into her and talked to her about what I observed. She said, “I use to apologize for having to put my feet up. But then I thought, ‘WHY am I APOLOGIZING?’ I knew that only made ME feel badly. I decided then and there to stop being sorry for having tired feet“.
If I’m at work during a meal time and the weather is nice, I often go out to my car. I load my dog up, crank the air or heat (depending on the season), turn my cochlear implant and hearing aid off, and eat my meal in the quiet. Understanding my propensity for hearing fatigue, means I take time to unplug when needed. I need to recharge. I’m not anti-social (ok… well, not VERY) and I’m perfectly capable of going to the staff lounge or faculty dining room if I want to do so. Taking a mid-day recharge in the quiet enables me to complete my day STRONG… and unapologetic. Isn’t that what independence is about?
My iPhone may hold a charge longer than I do, but I take responsibility for recharging my own battery. Do what you need to do to recharge.
Need a nap? Take one.
Need some tylenol and a twenty minute break? Take them.
Nosek, M. A., Hughes, R. B., Swedlund, N., Taylor, H. B., & Swank, B. (2003). Self-esttem and women with disabilities. Social Science and Medicine, 56(8), 1737-1747.
Putnam, M., Geenen, S., Powers, L., Saxton, M., Finney, S., & Dautel, P. (2003). Health and Wellness: People with Disabilities Discuss Barriers and Facilitators to Well Being. Journal Of Rehabilitation, 69(1), 37.
Russell, D., Turner, R. J., & Joiner, T. E. (2009). Physical disability and suicidal ideation: a community-based study of risk/protective factors for suicidal thoughts. Suicide & Life-Threatening Behavior, 39(4), 440-451. doi:10.1521/suli.2009.39.4.440
Wright, Beatrice A. , (1983). Physical disability – a psychosocial approach (2nd ed.). , (pp. 116-156). New York, NY, US: HarperCollins Publishers
Yorkston, K. M., Johnson, K., Boesflug, E., Skala, J., & Amtmann, D. (2010). Communicating about the experience of pain and fatigue in disability. Quality Of Life Research: An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 19(2), 243-251. doi:10.1007/s11136-009-9572-1
We do not have the opportunity to watch much live television in my house. My husband and I tape our favorite shows and then watch them together the couple of nights a week we are both home in the evenings. It worked out this summer, that I did not have a class to teach during the first session of the summer semester. The timing is terrific since I completed my doctoral coursework, and have now started the dissertation. There is a great deal of reading and writing involved at the beginning, so not having a class to teach until 7/1 is a “plus”.
In spite of all the groundwork needed to start the dissertation right, I have had some down time as well. Trying to catch up on my HGTV favorites before I’m back to teaching, I have been surprised by new commercials as Terry nor I watch commercials. The new Synder’s of Hanover pretzel commercial is unique. Well… it’s kind of scary too, but I’ll get to that.
Laura Wernette is the new “smoky-voiced pitchwoman”. I think she’s just scary. She has this intense, no-nonsense stare that reminds me of a grown-up Wednesday Addams.
I think what bothers me about the commercial (besides the fact they are not captioned – ahem) is that the woman in the advertisement has a facial expression that says one thing (I want to kill and maim you) while her voice is saying another (Synder’s pretzels are the best). From things I have read, the advertisement is popular and folks think the pretzel woman is pretty funny. I cannot justify what I see in her face to what I hear coming out of her mouth. I spend far too long thinking about it, believe me! It made me think about all the times I misunderstand someone’s mood when I choose to only look at their face.
My poor husband has a perpetual eyebrow grimace.
Even when he is smiling and relaxed, his eyes seem almost angry-looking if one didn’t know him better. When he speaks, he has this laid-back, southern charm and friendliness that (in my opinion) doesn’t “jive” with his facial expression. I tease him about it all the time. (Aren’t I sweet?)
I think one of the things that is most difficult for someone new to hearing loss, is learning to look at the whole picture before jumping to conclusions. It can be hard to try to make sense of what you can actually hear, and match it up with what you think you are seeing on a person’s face or in their body language. (It’s impossible to do when you know and love someone who is fluent is the language of SARCASM, and the voice and pitch deliberately DO NOT match what is on the person’s face).
My best practice is to simply to ask for clarification when needed. If someone’s voice (as heard with my bionic ear, with some limitations on inflection, pitch, and tone) does not match up with what I see on the person’s face, I just ASK.
“Could you clarify for me what you are trying to say? You seem upset, but I don’t want to jump to conclusions”
“You seem really calm, but you practically growled that out to me. Is everything OK?”
I was at a residency this past March and the weather was beautiful. I spent every spare moment outside walking Milo (along with everyone else on break in between workshops). One afternoon, I stopped to answer some questions about Milo to a group of ladies I had been with in several workshops. I noticed the three women all scowling. I tried to pay attention to what they were saying, and occasionally they laughed as well. I had trouble concentrating on their WORDS because their faces were scowling – and looked angry. After a few minutes trying to figure out why their facial expressions were not matching what I was hearing, I realized the sun was in their eyes! With that epiphany, I quickly changed my body position with the comment… “Here. Let me move so the sun isn’t in y’all’s eyes”.
I could have silently freaked out wondering what in the world their problem was. It took me a few minutes, but I finally realized why I was having trouble understanding their mood when their faces were all sun-squinty angry. Small wonder that hearing loss is considered a communication disorder! Especially if you have an acquired hearing loss, learning to communicate without one of the major cues (hearing), can be difficult.
My proximity to Johns Hopkins University Hospital, allows me to mentor folks who are seeking cochlear implantation to restore hearing. One of the questions I am always asked during these meetings is, “What has been the hardest thing for YOU about acquiring hearing loss later in life?” I’m guessing the frequency of the question points to the desire most people have to see similarities in their own struggles. When I explain that having to ask for clarification was a necessary, but difficult thing to learn to do, the people I am meeting with seem so relieved. Some even say, “Oh gosh, it is so good to hear someone else say that! Does it ever get easier?”
It does. That always seems to give them some hope as well.
You are still going to have frustrating moments of confusion. I am 11 years post-op and I believe “hear again” with some level of confidence. I still make mistakes. I may misinterpret tone and intentions, or I may not catch that there has been a complete subject change in the conversation (something I’m rather famous for, if I do say so myself!). As with any acquired disability or life change, in time and with lots of practice, YOU WILL ADAPT. Part of that adaptation will be in recognizing that at times you are going to blow it, but it does not de-rail all the progress you’ve made to date. We can be extremely hard on ourselves! Everyone makes mistakes – even people without acquired disability or challenges.
I’m reaching out on behalf of Cochlear Americas. We created Valentine’s Day cards for those in the hearing loss community to share with whomever they HEARt this Valentine’s Day. If you think the Hearing Elmo community would be interested in these cards, please feel free to share them!
How to access the Valentine cards:
We have four Valentine’s Day cards that you can download, print, cut out and distribute directly from our Hearing Connections blog.
We will also be sharing the cards on our Facebook, Twitter and LinkedIn channels. Keep an eye out for them to appear and share them digitally if you’d like.
Ways your community can use the Valentine cards:
Print and distribute them in person or by mail with friends, family or colleagues.
Share them on your social channels.
If you have children, print for your child to distribute during their school Valentine’s Day party.