Category: acquired disability

Sorry? Wait a minute! No I’m NOT!

Published on by hearingelmo1 Comment

Words matter. As I have aged (and hopefully matured) the discovery of what we say and how we say it has evolved as I have learned to communicate with focused intent.

As a person with hearing loss, a typical response for me after you first say something ranges from:

Sorry? (or I’m sorry)

Pardon?

HUH?

My mama raised me to be polite I suppose. However, I have lived with acquired disability nearly twice as long as I did with “normal” hearing and “normal” balance. Even people with a normal range of hearing for their age may respond with an “I’m sorry? What was that?” if they miss something in an overly noisy room. Because I am more likely to miss what was said or miss the context and fully understand what was said, I am more likely to use these phrases.

After some length of time living with these ingrained habitual responses, I realized how it was actually making me FEEL. I’m all about good manners. I noticed that I was having to say, “I’m sorry?” so much that I was a really, REALLY sorry individual. I also realized that I had nothing to apologize for when I said it. More importantly, it served no purpose. Heck, I give workshops on how to convey to someone you didn’t hear what they were saying.

It is best to educate and advocate. Don’t complain or apologize. I am best served by responding in one of the following ways:

“I did not hear most of that because of the background noise in here. Would you repeat that please?” (Maybe even suggest a quieter location)

“I heard you say, “ya-da yada”, but missed the last part”. (Obviously we can fill in the yada with what you actually heard).

Beware of your volume. Be careful not to “guess”. After all, you are trying to educate folks that pieces of their sentence was lost but not EVERYTHING they said was.

My husband once said to me in a crowded room, “I will see you later. Plan on dinner at six?”

I heard, “… see… later. Dinner and sex?”

YES PLEASE.

When you become more proactive about what you heard and did not hear, you can also suggest synonyms. When my kids were in elementary school, they would joke that they knew more synonyms than anyone else. Having been to all of those hearing loss conferences (thanks HLAA) they learned that if your loved one was having trouble understanding all you said, throw out some different key words. It may end up being a consonant blend they have no trouble hearing at all!

“Grandma called this morning and asked you to call back when you can”.

“What?”

“I spoke to Grandma this morning. Be sure to call her back tonight!”

I hope you do not misunderstand the purpose of this post. There is nothing wrong with being polite. There is everything right about letting someone know you did not hear them.

– – – – – – – – –

Let me quickly chase a rabbit here and insert that faking that you can hear is much different than faking you are listening. The latter may result in hurt feelings or a punch in the arm. To fake that you heard someone has heftier consequences. 

– – – – – – – – – –

What matters is letting them know you did not hear them in the right way. Our age-old habits of apologizing do not fix the problem. You are more likely to encounter people who are tired of repeating something, or start to do so LOUDLY. This only distorts the words making it even harder to understand.

By suggesting a quieter place to go, explaining you may do better with a different choice of words that can be understood in context better, or repeating the part you DID hear so that they don’t have to repeat everything can go a long way to better communication.

Depending on the environment, some other great options to take the place of constantly apologizing are:

  1. If in the car, suggest turning the radio and/or music off so that your ears do not have to compete with their voice.
  2. Ask to step into a building so the acoustics assist you in catching more of what they said to you. Outside, voices can D   r…      i  f…    t…   a way…
  3. If you know them well enough, ask them to ditch the gum 🙂
  4. Make sure by word and deed that the problem is not something you should apologize for as no one did anything wrong. They didn’t either – so work on making sure they do not think you are criticizing them.
  5. Do not let others say, I will tell you later. They won’t. If you hear this, let them know you will be following up by email to discover what they said because it is important to you.
  6. If you see a conversation going sideways and frustration is evident on the face on the person you are speaking to, ask for an email. Explain you simply cannot hear them in this environment and that you ask they follow-up with a text or an email. Assure them you want to respond as needed.

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal

Darn it, I am STRONG

Published on by hearingelmo3 Comments

 

I’m no Super Hero, but I am strong!

You have “stuff”. I have “stuff”. Y’all? We all HAVE “STUFF”.

I am — who I am — because of “my stuff”. Your own “stuff” may not define you but it certainly shaped the person you are. It is a wee bit aggravating, however, when someone says “You are such a Super Hero or an inspiration” because of who I am as a person with disABILITY. It’s not that I don’t want to inspire someone. I hope my adult children and grandchildren think I am worthy of imitation and example. I also want to instill in them (and others) their special value because of who they are all because they are here,

on earth,

within our community,

making a difference where they can.

This Doesn’t Mean…

I am not grateful for all God has allowed in my life to make me the woman I am. I want to encourage. I want to be a good example to others. I want to make a difference. This does indeed mean that I am grateful for my disABILITIES. My hearing loss has taught me about communication and about visual cues about the soul of a person. My balance disorder has taught me to take special care, that every step and turn should not be done impulsively. My cane has taught me to lean on something sturdy to provide a 3-point foundation. My service dog has taught me to pay attention and to have confidence in something with far keener senses than I have. I am grateful for my disABILITIES. Yet, I want to inspire, encourage, and don super hero capes because I am a strong woman.

Your stuff may not be disABILITY. Maybe you are a member of a diversity group and the challenges that has presented has strengthened once weak character muscles. Advocacy and inclusion awareness activities have broadened your scope and influence. You are strong because of it.

Maybe that you are a single parent, a survivor of a serious illness, domestic violence, recovered addict, or live with other invisible or chronic illnesses, have made you the strong person you are.

I’m currently staying with my mother who is recovering from a 2nd hip replacement. A North Carolina sister-friend contacted me and we were to have lunch today to catch up. It’s raining, like… a LOT. This means my balance is wobbly, my tinnitus is roaring, and I’m feeling particularly shaky. My friend texted me early (knowing the state I am likely in right now) and suggested a (quite literal) raincheck for lunch.

Does this mean that I’m weak… today? No. I may have to make smart decisions to keep myself safe and avoid likely falls and concussions, but this does not make me weak. I am still strong. It simply means that today my strength is manifest in my practice of good self-care. I can wobble and be strong by making smart decisions to take care of myself.

Challenges not Limitations

Each of you have something that makes life a challenge. Whether it is something physical, spiritual, emotional, or cognitive, we all have challenges. I don’t like the word “limitations”. I prefer to think I am not limited in any way. Instead, I have challenges that exercise my muscles to make me strong. It might mean different choices. Perhaps it means a “raincheck”. I may have to ask for assistance from my service dog or even a person. I am not limited. I simply have challenges. These challenges make me strong.

This post began with exposing something everyone already knows. We all “have stuff”. Your own “stuff” presents challenges, but those challenges make you strong.

This doesn’t mean that you may occasionally feel overwhelmed. It doesn’t mean that there is anything wrong with the fact that at times, you just want to give up. That’s where the rest of us come into the picture. We need each other. We need to support each other. We need to celebrate with each other. If you haven’t seen the now viral video of Miss Nigeria going bananas with genuine glee at the “win” of her friend Miss Jamaica, you have missed out. You can view it here.

I want to be the kind of support and help to YOU, that I don’t hesitate to respond with questions from people who follow my blog or who know about my work in the disABILITY community. I want to celebrate every win you have. I also want to assist when you do not win, and I want to stand in the gap for you when you simply need someone to care. Blogs, vlogs, online support groups, and social media platforms have become a valued network and access to “Miss Nigerias”.

Hey… I totally get feeling all alone on my own little island, crippled by my MIND about my own disABILITIES. It happens. We buckle, hole up, and lick our wounds. Friend, please don’t stay there. Look for the resources and help easily found in a vast array of fully accessible environments. Indeed, we all have “stuff”. We also need each other.

L. Denise Portis

©2019 Personal Hearing Loss Journal

Use the Freaking Microphone

Published on by hearingelmo3 Comments

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.

  1. 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:

  1. My comprehension goes to 80-90%
  2. I expend the same amount of energy a hearing-abled person expends to attend a meeting or workshop.
  3. No one feels compelled to send me copious notes about what they just covered.
  4. 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.
  5. 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.

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

Ardon, F. (2019). Your voice carries… use the mic anyway. Neuroamazing. Retrieved

December 15, 2019, from https://neuroamazing.wordpress.com/2019/10/09/your-

voice-carries-use-the-mic-anyway/

National Institute on Deafness and other Communication Disorders (2019). Quick statistics

     about hearing. Retrieved December 15, 2019, from

https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing

Tidwell, R. (2004). The ‘invisible’ faculty member: The university professor with a hearing

disability. Higher Education 47(2) 197-210. doi: 10.1023/B:HIGH.0000016421.25286.e8

“H A L P”

Published on by hearingelmo4 Comments
I’ve…
got this…
Halp! HALP Geegay!

Say what?

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:

  1. Figure out she really did need it to accomplish what she wanted to do.
  2. 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.

But…

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.

BUT…

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)

Necessary Reminder

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

L. Denise Portis, Ph.D.

©2019 Personal Hearing Loss Journal

Pogosyan, M. (2018). In helping others, you help yourself. Psychology Today. Retrieved December 7, 2019, from https://www.psychologytoday.com/us/blog/between-cultures/201805/in-helping-others-you-help-yourself

 

 

Careless Words

Published on by hearingelmo2 Comments

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…

hurt them

demoralized them

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.

OWN It

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)

Make amends

Strive to do better. Vow it!

Practice

Call it (when appropriate) when you see others do it

Follow up and use all five apology languages IN WRITING.

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?

Have a great week y’all!

L. Denise Portis, Ph.D.

© 2019 Personal Hearing Loss Journal

 

 

“We Are Not Given a Good Life or a Bad Life”

Published on by hearingelmo3 Comments
“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)

“We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.” (Devica Fernando)

I believe one of the most self-destructive things a person with disAbility can do is to compare themselves to other people. I have even heard people with disAbilities compare themselves to other people with disAbilities… seemingly weighing “who has it worse“. Y’all? I have done this myself. Believe you me – I get it.

I think people who live with chronic illness or disability do this for one of two reasons:

  1. They are trying to remind themselves they are better off than “so-and-so”
  2. They are trying to discount the perseverance and courage of another because there is “no way they can understand YOUR life” because you have things much worse.

Let me start with the first one.

If you have “stuff”… physical, emotional, and mental challenges, don’t ever compare yourself with someone else also struggling. This is especially dangerous if you end up invalidating your own difficulties. The life challenges you deal with are just as legitimate and real as those faced by other people.

Frankly? Every person you know is fighting a battle you may – or may not – know about. This is the reality of life. Those of us “dealing” with life’s challenges were not given a good life nor a bad life. In spite of what I’ve heard others bellyache, not even God is at fault for your “good or bad” life. As Ms. Fernando stated, “It’s up to US (emphasis added) to make it good or bad”.

So (temporary) pity parties are not allowed? Well of course they are allowed. They are also

expected

normal

even beneficial.

You just can’t stay there wallowing in self-pity. If you believe in the power of “psyching yourself up”, simply do so by focusing on your own life and don’t compare yourself to others. It’s OK to not be OK. It’s not OK to think you should be OK, because compared to others you’ve got it pretty good. The struggle is real and we all have struggles.

Before I leave this point, allow me to just say that I am “born again” about sharing and caring with other people who live with chronic illness and disAbility. We can learn from each other. My greatest “teachers”, those who by example or explanation, coached me to try a different approach, a new assistive device or tool, or to adopt a new mindset to help me succeed.

The second point can be much harder to avoid. As a person with disAbility (late-deafened) and chronic illness (Meniere’s disease), I sit in meetings with my peers feeling frustrated when someone makes a really lame excuse for not doing something well or refusing to take on a responsibility. I think, “Well for love of cracker jacks, who goes around saying they couldn’t complete a task or responsibility because they are just to busy?” (Yes. I really think this LOL).

Who am I to say that someone without VISIBLE disAbility or chronic cannot use “busy-ness” as an excuse? Maybe they are dealing with something you do not know about. Maybe…

Their child has an unhealthy addiction.

They are scrambling to make room for their ailing mother who can no longer live alone.

Their most significant, personal relationship just imploded.

Their doctor wants to see them to re-take a medical test.

At the community college campus where I work, inclusion is the word of the day (and week, month, and year). Yet inclusion – includes – people who seemingly do not fit into a defined diversity group. Diversity implies all the ways we are different. I don’t know anyone breathing who isn’t different in some way. Inclusion, means to universally INCLUDE.

This past week I retired my 2nd service dog from Fidos For Freedom, Inc., specifically from working with me in the classroom at AACC. We started a major demolition and construction project this summer. Unfortunately, after working nearly 3 months on desensitization, Milo is unable to cope with the loud noises and “mini earthquakes” to focus on his job and assist me. I taught two classes this summer (Developmental Psych and Intro to Psych) and they were the hardest classes I have taught to date. I have had the assistance of a service dog in the classroom for 14 years! (Milo will continue as my partner in all other areas and is not retired full-time as of yet). Having to carry all of these assistive devices to work just to be independent in picking up things I’ve dropped or walking without wobbling, has been an emotional, mental, and physical challenge for me.

A couple of weeks ago during one of the breaks I offer (as it is a 4-hour class!), I ran into a colleague who teaches in a different department. I know her well enough that when I said, “Hey! How are you doing?” she answered honestly.

“My life is hell. This is the hardest summer session I have ever taught.”

I will admit my first thought was a flurry of reverse-prejudiced “OH BRUTHER” rationalizations.

I mean… she is healthy and athletic, and in her prime. She has tenure. She is well respected. Her expertise is valued. How is it that SHE is having the toughest summer? She doesn’t have any disAbilities or chronic illnesses! There I went with a silent “eye roll” and judgement simply because the things I was dealing with in adjusting without a partner were so much more IMPORTANT than anything she could bellyache about!

I immediately (mentally) slapped myself up side the head (though likely would have benefited from the real deal), and instead asked, “Well gee! What has been going on?”

Come to find out anything that COULD be going wrong in her life, was indeed going wrong. Her teen daughter was hospitalized and put in long-term care for depression. It came from out of nowhere and no one in the family had seen any warning signs. Early in the summer, she nearly lost her to suicide. Add to that long-term plumbing issues, car troubles, financial woes, and an internet stalker (I kid you not) rounded out the “list”.

Nope. This fellow teacher does not have any disabilities that I am aware of, nor any chronic illnesses. Yet, she too, has been struggling all summer and doing her best to cope. She, like me, chases down and hog-ties that professional smile to paste on right before entering a classroom. She is distracted and suffering from insomnia. She has cried many tears. Embracing true inclusion has taught me to recognize that her struggles are just as real as mine are. I love what Jordan (2011) said in the Diversity Journal: “Inclusion involves bringing together and harnessing these diverse forces and resources, in a way that is beneficial. Inclusion puts the concept and practice of diversity into action by creating an environment of involvement, respect, and connection—where the richness of ideas, backgrounds, and perspectives are harnessed to create business value.”

My colleague’s “stuff” looks different than my own “stuff”. It’s still STUFF. Encouraging and supporting everyone, benefits, well… EVERYONE. No one has everything going for them; a life without problems, fears, or struggles. However, everyone has something going for them.

Everyone.

Denise Portis

©2018 Personal Hearing Loss Journal

 

I Would Rather Walk with a Friend in the Dark, than Alone in the Light

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I would rather walk with a friend in the dark, than alone in the light — Helen Keller

I graduated from Walsh High School in a rural area of Colorado in 1984. Fast forward 34 years <wince> and I am graduating again with now my final degree. In 1984 I was a healthy young woman with a moderate hearing loss in one ear. In 2018 I am a middle-aged woman in a perpetual state of getting healthy <wince>, profoundly deaf (and “hearing again” as long as I am wearing my bionics) and an adult with disability from Meniere’s disease and Post Concussive Syndrome.

It may surprise you to learn that I am happier and healthier (emotionally and psychologically) than I was at the age of 18. Life has been hard – and continues to be, but doesn’t everyone experience that in some form or fashion? My challenges have made me who I am today.

The 2018 Denise, has found a life worth living by embracing my unique challenges and focusing my life and energy in the disability community. Oh yes! It’s hard sometimes… dark even; however, I am amongst friends, fellow warriors, super heroes, and advocates.

May I just say, “THANK GOD FOR THE INTERNET”? There are numerous research studies that support that the Internet has connected, educated, and created a platform for advocacy for those with disability. The community, the friends I have found over the last 34 years has made every challenge I’ve shouldered worth it. Most of the people with disabilities I have come to know have different challenges and diagnoses. Yet all work hard to experience the best quality of life they can. We use a variety of accessibility tools, medications, assistive devices, and medical procedures to maximize every opportunity while insisting on a productive and meaningful life. We are stubborn. We believe in self-care. Our priorities tend to be the things that really matter. Some of us are Spoonies.

My dissertation, something I have become quite passionate about, revolves around the theory that traumatic events and diagnoses do not have to destroy a person. As a matter of fact, a wealth of research (my own included) supports that these events can stimulate growth – the foundation of Posttraumatic Growth studies.

This doesn’t mean that I do not have bad days. They happen. Those bad days are something you recognize and experience as well. Yet I have learned that walking in the dark and challenging path of life with disability with all OF YOU, is far better than any walk I took on the lighted, well-tended path alone.

My challenges are progressive. Do you know that doesn’t even bother me? I’ve learned how resilient I am and I have learned to:

  1. Reach out to my community when needed for support
  2. Ask for advice and work-arounds
  3. Find new ways of doing things
  4. Rely on a loyal service dog for minuscule but necessary tasks I was too afraid to bother others with
  5. Believe in myself
  6. Pray hard – but work harder
  7.  Never stop learning
  8. Believe the future is accessible
  9. Stand with others
  10. Be vulnerable and open about the good and the bad

uphill-battle

I’ve also learned to CHOOSE HAPPINESS and to do my best to spread that message. It may seem like a difficult choice some days, but cognitive psychologists agree that if you deliberately change your thinker (your chooser), it will change your feeler, and show in a change in your behavior. It is amazing what “choosing happiness” can do to your personal outlook. Don’t be afraid to embrace the days you scream and cry and cuss up a storm (sorry mom). Those days will happen as well. I have learned though that if my focus is positive advocacy and choosing happiness, those screaming days are few and far between.

I’ve always admired Helen Keller. This intelligent and gifted woman had neither sight nor hearing. Yet Helen learned that her life “in the dark” was pleasantly full of like-minded friends and associates. She knew the value of walking in the dark with a friend. I hope you can learn to embrace that mindset as well.

L. Denise Portis, Ph.D.

©2018 Personal Hearing Loss Journal

Chronic Pain – Part ONE

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Welcome to guest blogger, Deborah Marcus, long-time friend (sister), fellow advocate and writer, and professional photographer. It is always great to have guest bloggers on Hearing Elmo because although I have lived with disability for 27+ years, I do not and cannot understand chronic pain conditions as it is not something symptomatic of my own challenges. I have always been thankful for that — for one thing I am a wuss. I have loved and admired Deb for a long time, in part because I consider her a warrior woman who DOES live with chronic pain. This is part ONE of a multi-part posting. Follow up posts in the future will link to this one so that her story chapters will remain connected.

What persuades me to step back from the ledge? What worked yesterday, today, what will work tomorrow? Those who live with chronic, severe pain or illness are familiar with these questions.

I have lived with disability for much of my life. Hard of hearing from a relatively young age, severely so through my 20s and 30s until I began to hear again at age 42 with cochlear implants, I am no stranger to the need to make adjustments. I have lived with other disabling conditions, too, which unlike hearing loss and deafness are largely a product of the external forces of trauma and abuse. At 54, I have lost count of the moments when I’ve told myself “keep on, keep on”. As a result of physical abuse which once took the form of being sent down a long flight of stairs, backwards and head first, I have experienced increasing challenges with my vestibular (balance) system. Once a series of intermittent episodes of vertigo, my imbalance is now chronic. For over two years now, I have not had a minute where my equilibrium is not in a struggle with the space around me. Along with this is a condition that I have managed to cope with for 38 years, for which I had no name until recently. Three years ago I wrote a short piece describing life with trigeminal neuralgia. Things have changed regarding my TN status since then, but it’s instructive to see where I was at that time: https://visionsofsong.com/2015/07/10/into-the-sunshine-living-with-trigeminal-neuralgia/

It is not the only pain condition I live with, but it is the most distinctly life-altering. About six months ago, I realized that the medication treatment that was giving some relief wasn’t doing much anymore. Trying different medications and doses brought no help. I spoke with my doctor, who referred me to a hospital that does high volume work in the areas of gamma knife radiosurgery and microvascular decompression, the only two procedures currently advised for my condition.Both procedures have a relatively high success rate for trigeminal neuralgia, 70 to 80 percent depending on various factors. After consultation, in early March of this year I underwent the gamma knife procedure. After a week’s time, I felt some improvement, which was incredibly uplifting for my mood, which had reached new lows. Knowing that it can take a couple of months to see the full effect, I hung in on the bad days, rejoicing in the better days in between, and anticipating further improvements. In the past couple of weeks, I have not been doing well. This past week has been terrible, and I have found myself bursting into tears as much due to despair as to the pain levels. My world, which was shrinking due to severe, chronic facial pain, was beginning to open up a bit, only to feel shrunken once again. I can’t decide which is worse, not thinking there would be anything that could really help bring my pain levels to manageable levels, or trying something that may in the end prove to be a failure for me.

The depression I have been managing somewhat successfully stepped to the front of the line. I became obsessed with the idea of planning my death. Not yet planning my death, but finding the idea of planning it out, by suicide, an intriguing possibility. Why? Why now, when I’ve lived with physical and psychic pain for so long, does it seem like now might be a good time to end my life? What makes one moment better than another, or none of them the right time? As much as I have dealt with depression to varying degrees throughout the years, I don’t recall a moment exactly like the one I had this week, thinking that maybe I’m done, really and truly. I felt that if I expressly stated that to anyone close to me, they would call in the big guys on me, which I do not want. Besides, I’ve been feeling like I’m wearing out the handful of good, caring people in my life with my challenges. I did not want to burden them with such thoughts. I knew that I could call the National Suicide Prevention Hotline (found here https://suicidepreventionlifeline.org/) and opted to use the chat box to communicate rather than the phone. It took a little while to get to the front of the line, but I wanted to see what would happen. As a Mental Health First Aid instructor, I know what it’s for and recommend it often. I wasn’t sure if it made sense to call since I wasn’t sitting by the computer with a gun or a bottle of pills in my hand. I recognized my need to reach out, and am glad that I called. The person on the line didn’t tell me much I didn’t know, but I could tell they cared that I was struggling, and that meant a lot. At the end of the call, they ask for some feedback. One of the questions has to do with feeling hopeful/hopeless. I was able to say that I felt a little less alone after this brief conversation. It got me thinking about how much, and yet how little I need. I suspect this dichotomy is true for many of us. I can only share from my perspective, and from what I’ve teased from things shared by others over the years.

There has been a fair amount of discussion lately regarding the intersection of childhood trauma and health outcomes. If you would like to look at this in some depth, you may consider starting here, though there are many other resources: https://www.ucsf.edu/news/2016/10/404446/undoing-harm-childhood-trauma-and-adversity

As a survivor of (and sometimes thrive-r in spite of) sexual and physical abuse, having undergone several rounds of therapy to figure out how to cope, I did not immediately make the connection between my physical challenges and what I had experienced while growing up. The mind-body connection was happening in spite of my limited insight. Oh, I understood that my mood could be connected to my experiences, but pain? Not only acute pain, or pain that is persistent due to an event, but pain in parts of the body that were not injured, or if they had been, were still in pain long past when the bodily injury had healed. I have been handed and thrown off a diagnosis of fibromyalgia twice in 12 years. No fibro for me, thank you! It’s that diagnosis they give you when they don’t know what’s wrong, is what I would tell folks. If sounds so…hopeless. I know some who live with this diagnosis, and they find ways to make a good life for themselves. It felt like being saddled with one more thing that I didn’t want to carry.

But trigeminal neuralgia, that’s something they can tie to an event. In some cases it develops post-shingles. In others, trauma can be the culprit, and again, we suspect that is the case for me. I have been more comfortable talking about this severe and persistent pain condition than any of the others, yet there is no denying that all of what I experience is intertwined within me, and so perhaps the only way through all of this is through all of it. Still, I haven’t figured out what to say to myself to want to keep on during the worst moments. I think I put every penny I had on this horse winning the race, with the radiosurgery giving me significant relief for a while. If it doesn’t, I’ll need to see if I can find another message that is meaningful, to keep on, keep on.

I welcome feedback, and aim to follow up with another piece on the topic of chronic pain, disability, and the reconstructing of a meaningful life.

Deborah Marcus

https://visionsofsong.com

 

New Twist on an Old Fable

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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:

  1. Have different symptoms
  2. Take different medications
  3. Have different responses/side effects to those medications
  4. Have more support than you do
  5. Have less support than you do
  6. Have a different personality style and traits
  7. Have a different developmental history than you do
  8. Have different faith practices than you
  9. Have different co-morbid diagnoses (Other conditions in addition to their primary challenge)
  10. 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!

© Personal Hearing Loss Journal

Denise Portis, Ph.D.

My Name is Milo and I Was Afraid of Fidgets

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My name is Milo and I’m afraid of Fidgets

I can’t tell you how much fun it is to be on service dog partner #2. Milo (and Chloe), both trained at Fidos For Freedom, Inc. and could not be more different. Milo(bear) is timid by nature. When he is on task, however, he is very focused (and less distracted by wanting to love on EVERYONE like sweet Chloe was). However, his timidity makes introducing new things a bit of a trial.

You may be familiar with a new and popular “thang” called the “Fidget”. They are actually great classroom tools for people with ADHD. I’m all about classroom accessibility, so if things like this can help students concentrate? Well, please come with your Fidget.

Unfortunately it is “new to Milo”. Milo began seeing a lot of Fidgets in the classroom. They spin – and to my knowledge don’t make a noise – but who knows if a dog can hear even this quiet “whirrrrr”? The only problem was that Milo was terrified of them. He’d stop mid-task if he saw a Fidget in use and walk around behind me to peek around my hip.

NOT VERY HELPFUL.

I knew I was going to have to do something to get him use to these spinners. He couldn’t continue hiding under the nearest desk. Since I need him to pick up the items I constantly drop, I needed him to be able to focus in spite of Fidgets around him during class.

Desensitization

After talking to a couple of trainers at Fidos For Freedom, Inc., we decided the way to go was to desensitize Milo to the Fidgets.

… so I bought one.

I opened it up, put the center button between index finger and thumb, and “gave it a whirl” with a flick of my right hand.

Not the WISEST thing to do since Milo(bear) was sitting right next to me. He made a strange sound in the back of his throat and took off. I interpreted it as “Et tu, Brute?” (my Literature teacher-mother would be so proud).

I found Milo in the walk-in closet.

Long story short, I worked with him for 4 days in short intervals of exposure. Here is where he is now…

Hopefully, when classes start on 8/28, Milo(bear) will be completely comfortable with Fidgets. This whole “desensitization” process was good for both of us. My daughter and hubby are expecting my first grand baby in October. Milo has never been around babies. He was raised in Cumberland prison and his puppy raiser before that, nor his one-on-one trainer after… had babies around. I suspect he will have to learn to become accustomed to more things very soon. ‘Cept I won’t be spinning the baby girl around and chasing Milo(bear) to expose him. <AHEM>

Facing Our Fears – and Perhaps Desensitizing Ourselves to Them

One of the biggest pluses of having a service dog partner is the courage the partnership provides. Learning to cue off things Milo(bear) hears, that I don’t, is great! I feel safer. I can count on him to hear things before I do. I can look in the direction the “sound maker” is coming from so that I can stay safely out of the way (cars, large groups of students, shopping carts with rowdy kiddos, etc).

Because of peripheral neuropathy, I drop things all day. I’m not talkin’ about that I drop 2 or 3 things a day. I drop 2 or 3 DOZEN things a day. In the past, I would have to ask for assistance to reach it and/or pick it up. Otherwise I would risk falling because of vestibular issues. This meant I often didn’t go out and do things on my own because it was too hard to ask people for help. Milo(bear) has helped me face some of those fears because he is there to help me. His favorite task is “fetch-hold-give”. In my thinking, this isn’t true desensitization though. Milo(bear) has become an assistive tool to mitigate those challenges. It’s a way around them instead of “through” them.

As I sat and pondered whether or not I have ever truly desensitized myself to something, I realized that most learning through desensitization has come from how I chose to respond to comments, people, or situations.

At the age of 51, I have now lived more of life as a differently-abled person than as an able-bodied one. I can tell you that how I respond to challenges, hurtful comments, or discrimination is much different than how I responded as a 25-year-old. Some of this improvement evolved from exposure. Other measurable steps of improvement simply came from educating myself and learning all I could about positive advocacy. It’s not that the things people say cannot and DO not still hurt me occasionally. My RESPONSE is what has changed. A 25-year-old Denise would:

  • Cry
  • Isolate myself for days afterwards
  • Embrace depression instead of heading it off with coping techniques
  • Open my mouth and “let it rip”
  • Retaliate
  • Throw a private and public pity party (that no one ever RSVP’d to)
  • Plot revenge
  • Determine to HATE that person to the end of my days
  • Google how to put a “hit” out on someone
  • Preach at them and try to make them feel guilty with a long, drawn-out “altar call”
  • … and more equally ineffective responses.

Even through constant exposure, the 51-year-old Denise does NOT always respond in a healthy and proactive way. I still have “knee-jerk” responses occasionally, especially if it takes me by surprise. However, my new response is at the very least, more helpful to both myself and the twit that said something unkind. Now I tend to:

  • Consider the source and determine how best to respond
  • Take some time to determine HOW I want to respond
  • Determine if I SHOULD respond
  • Choose a good time and place to respond
  • Cry if needed…
  • Chant to myself “you can catch more flies with honey than vinegar” (and then ask myself if I even WANT this particular fly…)
  • Occasionally seek advice from a peer support network if it is something “major”
  • Follow through on a course of action and DON’T HOLD A GRUDGE

I have learned to do this through trial and error, but also through desensitizing myself to these situations by simply experiencing them and learning what keeps me sane and healthy in how I respond.

Let’s face it.

If you live with disability or chronic illness, you are going to constantly be faced with people who don’t understand, don’t care, or say/do inappropriate things. The 25-year-old Denise response did not improve my situation, nor did it bring peace (my zen was woefully rattled).

I do not FEAR the things people say to me or the situations I may find myself in as I live life. I know “stuff is gonna happen” and when it does, my response is MORE important than how I feel as a result of the experience.

We cannot control the things people say, nor can we completely keep our life experience with disability, “hassle-free”. I do believe we can learn to live in harmony with all the Fidgets in our lives. Being a positive advocate comes from doing things wrong sometimes and learning from it. It also comes from the discovery of having handled something well, and seeing the positive change and result from our proper response.

Denise Portis

©2017 Personal Hearing Loss Journal