Cowlicks and Compromise

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cowlick

Cowlicks and Compromise

I have a cowlick. I remember the first time I noticed the little tuft of hair—likely no more than 20 hairs total, in my bangs. I was at my grandmother’s house who lived on the farm 1.5 miles west of our own farm. I was washing my hands at the sink, and could just barely see my face and head in the mirror above the sink.

<SIGH> “Lookit this hair! It won’t lay down! It points the wrong direction”.

My grandmother informed me that it was a cowlick. Astonished and more than a little bit worried, I gnawed on my lower lip as I contemplated this new information. Demanding to know the “when and where”, Grandma calmly informed that it happened when I was a baby. I remember thinking, “Who would let a cow lick their baby’s head?” Either Grandma was tired of my questions, or she could see that this greatly concerned me. “It’s like a blessing. Even the cows knew you had great potential. You can do ANYTHING!”

I know she thought she was encouraging me, and later it actually WAS the source of encouragement when I recalled her words. However, she likely would have cracked up if she’d known how often I struggled to wash the cow saliva off my head after that.

Dreams, Goals, and Aspirations

I was a lucky little kid. I grew up in a small town, surrounded by really good people and warm, supportive family members. I was always told that I was really going to be something one day… I was going to make a difference. Whether it was the school counselor assisting me with college applications, or individuals in my church, each time it was said I thought, “This cowlick is coming in handy!”

Obviously, I grew to realize the cowlick had nothing to do with my “can do” attitude, but that seed planted as a youngster, certainly added to my determination. I already had a hearing loss in my left ear as I headed off to college. I would have one more surgery during Christmas break of my Freshman year. I never considered my hearing loss an issue as I had perfect hearing in my right ear.

Compromise

I know that I am a little bit stubborn. It’s not just because I’ve been told that I am, I recognize that it is hard for me to compromise. I’ve learned to compromise, which has only helped my relationships and even my marriage. I think in the beginning I saw compromise as “caving”. Because I was raised to be a strong, independent woman, I didn’t see how compromise could be a valued characteristic. I think compromise is actually misunderstood a great deal; perhaps even, considered a weakness.

My favorite definition of compromise (because there are a lot of them out there depending on the context in which the word is used), is from Chen (2004), when “a person has to give up something less feasible and achievable in order to accomplish career goals and projects that are more practical and obtainable” (p. 17).

After losing the rest of my hearing (ages 25-30), and discovering that what I thought was a natural “clumsiness”, earning the nickname of “Accident Prone Portis”, was actually Meniere’s disease, I learned to compromise simply because I was forced to do so. I learned to use adaptive devices, technology, and even learned to ask for help. I learned that to be realistic, I needed to cross some things off my my “to do” list. There are some things I just cannot do. That’s ok. It doesn’t mean I’m giving up or “settling”. I do get tickled at folks sometimes when they email me to say, “You are so inspirational!”

I’m not.

Huffingpost Post did a terrific piece on this topic. “When we think about inspiration, what inspires us most are ordinary people who have done extraordinary things. We appreciate when someone has the ability and willingness to be selfless, creative, innovative, or just dares to be different” (Green, 2013, para. 1). I’m not this person. I have no more talent, will power—or even COWLICK POWER—than anyone else. I have really good days. I have really bad days. Just this last week I found myself doing a little “soul cleansing” in the shower (the only safe place to bawl my eyes when you have service dogs in the house who cue off your mood).

I was crying because I was mad. Mad, that I’m forced to change the way I do my make-up. (I know… right?). I’ve always thought my best “feature” was my big, brown eyes and dark eye lashes. When my Daddy finally allowed me to wear make-up I learned early on how to highlight what I thought was one of my best features. My husband told me when we were dating that he just loved my eyes and wrote poetry about my peepers.

With progressive illnesses, one discovers that it is just that.

Progressive.

It sucks. Between my poor balance, shaky hands, and neuropathy in my fingers, it is impossible for me to use eye make-up now. I’ve had to change—to compromise HOW to wear and apply make-up of any kind. This… THIS is what reduced me to tears for a solid week! Some of the folks who write me and tell me that I’m “inspirational” also say, “I find that I spend too much time feeling sorry for myself!” Y’all? I’m crying in the shower because I can’t wear eye make-up!

I’m not very hospitable, but one of the great parties I know how to give is a PITY PARTY. I think most people who live with special challenges and illnesses find that they spend an inordinate amount of time feeling sorry for themselves. One quickly learns not to whine out loud because others frown on that. Both God and my husband know that I’m a whiney-baby. Trust me – I get feeling sorry for yourself. If your “differently-abledness” has you feeling sorry for yourself, you aren’t alone.

Weiner, Graham, and Chandler (1982) did some fascinating research on pity, anger, and guilt. Anger and guilt are associated causes perceived as controllable, while uncontrollable causes of negative events trigger self-pity (Weiner, Graham, & Chandler, 1982). I didn’t choose any of the challenges I deal with on a daily basis. You likely didn’t “sign up for” the challenges you face as well! When things happen outside of our control, it is natural to have feelings of self-pity. Charmaz (1983) explains that the medical field tends to “… minimize the broader significance of the suffering experienced by debilitated, chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones” (p. 168).

All of us grew up with dreams and aspirations. Some of us read books about having one year goals, five year goals, and ten year goals… working hard to lay the groundwork to make sure the goals were attainable. Instead, life happens. You may feel as if your life has been de-railed as you struggle to stay on track on a journey you had all mapped out.

The key is to compromise – but not give up. You may have to change the way you do things. I threw away all my eye shadow and purchased a magnified mirror and set up a means to steady my hand so that I can at least wear mascara. Other compromises are more worthy of being called “growth”.

Finishing school through distance education instead of doing so through a brick-and-mortar institution.

Using a cane and service dog to avoid running into quite so many walls each and every day.

Asking a student to follow-up with an email because I cannot hear them over the “buzz of sound” after class, and the acknowledgment that if they speak loud enough for me to hear them, everyone will hear.

Letting someone with normal hearing take the minutes of a committee meeting, even though my desire is to take notes.

Sitting on my caboose during the music in church because I cannot stand when the words are on a screen with lights, movement, and flashes. (Remember the good ol’ days when we used hymnals?)

 

Asking a family member to chauffer me around if I have to be out after dark (oncoming headlights trigger vertigo).

Using a cutting board ALWAYS, since not being able to feel your fingertips is dangerous when wielding a sharp knife.

Asking my service dog to fetch clothes out of the dryer so that I can fold them, even though I occasionally have to wipe doggie drool off of clean, dry clothing.

The KICKER compromise that many of us have to learn as a result of our new normal?

Asking for help to do something when we once did it all by ourselves.

When Do You Choose Not to Compromise?

A tough lesson in living a differently-abled life, is learning how to compromise by your own volition and to accept your own reality, and learning when NOT to compromise for others. Having a long-term blog on disability issues, invisible illness and chronic conditions, I have received one type of letter more than any other.

“My _______ (family, spouse, friends, co-workers) want me to stop using ________ (a cane, walker, service dog, assistive listening devices, medication) because it _________ (embarrasses them, makes them uncomfortable, makes me look bad).”

I wish I could reach out and SMACK UP ‘SIDE the HEAD, the folks who are saying this to you. They don’t realize all the compromises you’ve already made in order to successfully navigate your life and accommodate your new normal. (That’s right… you’ve resorted to mascara ONLY).

My friends? Don’t ever compromise… on chosen means of compensating just to make someone else feel better about your challenges. That isn’t compromise. That’s caving to a bully. Compromising by doing something differently in order to continue DOING means you are in control. Buckling to the pressure of someone who doesn’t live what you are living, will only yield bitterness, brokenness, and an unhealthy dependence. Do we need to ask for help sometimes?

Yes.

However, having a means of independence and being asked to give it up to help someone else deal with your issues is detrimental to your mental health and relationships. There are plenty of people who care about me that I have learned to not “talk out loud” around. They misunderstand the reason I’m belly-aching and offer selfish advice.

“You get so mad when people interact with your service dog. Why don’t you stop using one and find some other means to cope with your disabilities?”

This from a peripheral family member who:

  1. Is never around for me to ask THEM for help because they are in absentia nor have any meaningful intersection in my life.
  2. Is able-bodied (though mean spirited)
  3. Hates dogs

If using a service dog has enabled you to be more independent, then:

  1. Be more careful of whom you belly-ache too. Contact a fellow SD partner or a trainer.
  2. Find a way for the “drive by petting” interactions to become a positive advocacy channel.
  3. Join some face-to-face or virtual support groups with individuals who mitigate their disabilities with the partnership of a service dog.

I was recently contacted by the wife of a guy I graduated high school with in 1984. He’s coming up on the BIG 5-0, and she was looking for pictures “from way back” that we had so that she could use them at his birthday party and celebration. I took out some old yearbooks and began flipping through them. My senior yearbook had some great pictures of “all those from the class of ‘84”. In one section, the class voted on and selected one male and one female for specific “categories”. I was selected as “friendliest” and also “most likely to succeed”. (Don’t get any grand ideas… my graduating class boasted of 22 students). I sat there a couple of minutes wondering…

“Am I successful?”

“Did I waste my cowlick?”  

What I find valuable is making a difference, even if in only in one person. I have good days and bad days, but ALL days are lived where I look for and try to make a difference in at least one. It’s an adopted attitude that has really helped me adjust to being a person with invisible disabilities.

never-worry-about-numbers-help-one-person-at-a-time-2

Denise Portis

2016 Personal Hearing Loss Journal

Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology Of Health & Illness, 5(2), 168-195. doi:10.1111/1467-9566.ep10491512

Chen, C. P. (2004). Positive compromise: A new perspective for Career Psychology. Australian Journal of Career Development. 13(2), 17-28.

Greene, R. K. (2013). What is the true meaning of inspiration? Retrieved February 1, 2016, from http://www.huffingtonpost.com/r-kay-green/giving-back_b_3298691.html

Weiner, B., Graham, S., & Chandler, C. (1982). Pity, anger, and guilt: An attributional analysis. Personality and Social Psychology Bulletin.  8(2), 226-232.

Hearing Loss Valentines

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hloss valentines

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 FacebookTwitter 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.

Denise Portis

Hearing Elmo

Apocalypse

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apocaylpse 2

My husband teases me about my addiction to apocalyptic movies. I’ve seen so many, and new ones come out each year! My husband assumes that the reason I love them is that I do have a pessimist’s soul. I’ve tried hard to change this and I’m certainly more optimistic at “almost 50” than I was at “almost 30”. However, that “end-of-the-world” vibe is not why I love apocalyptic movies. I love them because normal people rise to the challenge and become real heroes. One I recently saw was “San Andreas Fault”. Even though it was a good movie, “The Rock” (the leading actor) is not a “normal person”, nor did he play a normal hero. (At least his acting has improved over the years…) My favorite “end-of-the-world” movies are those in which folks with normal jobs “rise to the occasion” and discover who they really are in the midst of turmoil, tragedy, and overwhelming odds.

Coincidence, or Logical Comparison?

Each semester, one of the extra credit options I offer to my students is called, “disABILITY for a Day“, or d4D. I co-advise S.O.D.A. (Students Out to Destroy Assumptions), a student club focused to raise awareness and advocate for disability populations. In the extra credit opportunity, the students must “take on” one of a list of pre-selected disABILITIES. We limit what they can choose, so that students are not taking on a disABILITY that may perpetuate a stigma, such as a mental health disorder. The choices are hearing loss, vision loss, mobility (ambulatory) challenges, and fine motor skills. Students are provided with ear plugs, or an eye mask, encouraged to borrow crutches, walkers, wheelchairs, or they can tape one or both hands into a sock to limit their fine motor skills. We ask that the students take precautions… no driving, or trying to work off campus; if vision loss… secure a sighted guide for the day, etc. Students must:

  1. Complete a class rotation with their disABILITY
  2. Answer 10 essay questions and read an article about living with disABILITY
  3. Write a reflective essay on their experience (or a video testimonial).

I was quite surprised that five students from four different classes used the same phrases in their reflection assignment. To my knowledge, these students do not know each other. Here are the similar wording or phrases used in response to the question, “What was the most difficult part of being disABLED for the day?”:

  1. “felt alone”, “if this were for real it would be like the end of the world”
  2. “I became invisible, no one even looked at me”
  3. “It was like the apocalypse happened. It was surreal, walking around in a world that completely ignored your existence. I felt like I had the plague”.
  4. “It’s like a bomb went off and I was the last person standing. I have never felt so alone”
  5. “Even my professors ignored me. I felt so alienated. It felt like the end of the world or something.”

When I see similar phrases showing up, I take notice. Is it just a new way young adults are explaining isolation, discrimination, and stigma? Interestingly, in essays this year, many of the students reflections included seeing a person they knew with disABILITIES with “new eyes”. Many were convicted to do a better job reaching out and including those who are differently-abled. One student shared, “I go to class with a girl who has fine motor [skill] challenges. I chose to tape up my hands for my disABILITY. She was so excited to see what I was doing and gave me advice during class [about] note-taking and doing a team activity. She always has a smile and doesn’t try to hide her issues at all. I admire her so much. If I ever develop disabilities, I want to be like her”. 

I’m so glad I grade essays at home. I read similar accounts from other students… a new awareness about what life is like for those living with what was their chosen disABILITY — only 24/7. I can’t tell you the number of times I cried at my desk. Not happy tears, and not sad tears. It was more of a WHEW tears.

WHEW. They get it.

I’ve never met a person with special challenges who WANTED those challenges. One of my students is legally blind. I was talking to him last year, and we got to talkin’ about acquired disABILITY. He didn’t lose his sight until his 20’s, which is when I began to lose my hearing. We discussed how we respond/think when people say how much they admire us now. He said, “Geesh. At no point did I say, “SIGN ME UP for being blind”. I didn’t ASK for this. You accept, adapt, and go on”. Isn’t that a terrific, healthy way to respond to challenges?

I (proudly) serve on my county’s Commission on Disability Issues and immerse myself in various local, state, and federal advocacy groups. Do you know that I am surrounded by heroes? Normal people with normal lives, forced to accept and adapt to significant issues. It may not seem like the apocalypse occurred – or that the end of the world is near. But… I can tell you that it can be hard. This doesn’t mean folks who are differently-abled or face significant daily challenges need Academy awards, fan clubs, or media coverage. We don’t want/need to see our “name in lights”, or for people to tell us how wonderful we are. Simply:

Include us

Befriend us

Hug us

Hire us

Believe in us

Advocate for us

Advocate? That’s right! The most important advocacy force comes from self-advocacy. However, peer advocacy, system advocacy, and legal advocacy are all highly effective forms of advocacy.

A new year is right around the corner. May I challenge you to try something in 2016? Advocate on behalf of another. Thomas and Bracken (1999) argue that peer advocacy is one of the strongest types of advocacy. You may find opportunities at work, church, or standing in line at the grocery store (check out video). You may be able to advocate at a local coffee shop (see video), or be able to participate in hiring panels. Just make sure it is advocacy that is WANTED. Be careful to avoid embarrassing someone, or advocating in a negative way. If you have the opportunity to advocate on behalf of another, I’d love to hear from you!

Thomas, P. F., & Bracken, P. (1999). The value of advocacy: putting ethics into practice. The Psychiatrist23(6), 327-329.

Denise Portis

© 2015 Personal Hearing Loss Journal

Making the Difference – in ONE

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calf feeding

I grew up on a working farm. I’ve learned to add that “working” part, for after I moved to the “big city” I discovered that many people have what is called a “hobby farm”. I loved growing up on a farm, but can’t say I’ve ever considered it a HOBBY.

Growing up, I had a lot of responsibilities that included various kinds of farm work. Probably one of my least favorite chores was baling alfalfa; in part, because I was highly allergic! Sneeze at the wrong time, and the bale of alfalfa was suddenly on top of you, or worse… several piled up and rolling off the flatbed truck. I can’t tell you how many times my aggravated Daddy had to stop the truck, wait for my siblings and I to reload some scattered bales… all because I sneezed at the wrong time.

One of my favorite responsibilities was feeding the baby calves. We always had some wee calves that required bucket feeding. The picture shown is not my own calf, but it was the same kind of bucket. Now-a-days, buckets are plastic or are big “bottle-shaped thingie-majiggers”. We had these old-fashioned (but serviceable) metal buckets. In the beginning, I hated the chore. If the school bus comes at 7:40, that means all chores had to be done early. I’m talkin’ cock-a-doodle-doo early. I wasn’t a 5 o’clock in the morning kind of kid, and I’m still not that kind of adult.

We used powdered formula for the calves. Some were orphans, some were adopted from feed lots, and some were separated on purpose from mama if the calf was unlucky enough to be born to one of our milkers. The powdered formula smelled horrible. Ugh. We mixed it with hot, HOT water. In this way, by the time we carried the buckets to the barn, it was still warm for the calves. The calves drooled all over the place. Occasionally, they would head-butt the bucket (like they would their mama) and if you weren’t prepared (or had fallen asleep against the fence post), formula went everywhere and you started all over.

I’m not fastidious. I can stand dirt under my fingernails and getting my hands messy. However, returning to the house every morning covered in calf drool and formula, had me grumbling and complaining big time. My dad would let me whine and complain. He is a very quiet guy. When he did open his mouth to talk, we all practically stood in awe to see what he was going to say. It was always rather profound. One morning after listening to me bellyache, he said, “Denise, have you ever thought about how important you are to that calf?”

Well… Dad didn’t expect an answer. He had already walked off. I stood there digesting that though and I must have thought about it the rest of the day. I think I must have thought about it all the way up ’til I went to bed that night. The next morning, I awoke with a new attitude about those calves.

They needed me. They were pretty low on the “totem pole” as far as value on the farm. However, if I didn’t feed them, they were goners. For all intensive purposes, I was their mama. That morning I noticed as I walked out to the barn that the calves were all standing by the fence waiting… for ME. Likely, they always had! However, I was so busy grumblin’ I never noticed. As I set the buckets on the fence to give them one more good stir before turning them around for the hungry bovines, I noticed the calves were mooing softly and actually wagging their tails. They were expectant. They knew they needed me and that I could provide what they needed. I remember throwing my legs up and over the top rail so that I could sit and put my weight on the bucket guards to keep them from being butted to the ground. Now that my attitude was different I was seeing these calves in a whole new light. So… I started singing.

That’s right. I sang to the calves. Over the following eight or nine years, calves heard me bellowing out every 80’s tune I could think of and even some 70’s tunes as well. I sang, and I sang, and I sang. My entire outlook and attitude towards these calves had completely changed because I discovered they needed ME. At this point, you are probably wondering, nice story… but what exactly are you trying to say?

PIVOTAL MOMENTS

I truly believe that it was at that point I realized, even someone like me can make a difference. I was just a young farm girl. I had few aspirations. Yet, even *I* could make a difference – perhaps in the life of something rather lowly (and drooly), but I could still make a difference.

Do you know I believe some of my panic at 25-years-old, with the realization my issues were progressive, was that I was afraid I would no longer be able to make a difference? I’ve been forced to adapt to increasingly progressive “differently-abledness”. However, those early lessons made an impact. A “nobody”, farm girl could make a difference to a calf. Surely, a differently-abled woman could still find a way to make a difference!

Don’t get me wrong… I’m no super hero. As a matter of fact, I cringe a little when someone at work stops me and tells me “You inspire me!” I’m thinkin’, “Girl? I’m no inspiration. I’m ordinary. I’m just me. I didn’t sign up to only hear bionically, and learn to walk a semi-straight line with a vestibular disorder!” Everything about my life is rather ordinary. Sure, I have challenges, but the fact of the matter is, WE ALL DO.

I wake up each morning thinking, “I want to make a difference for ONE, today” (well… and I’m also singing 80’s tunes – some habits die hard). Perhaps this is what “trips up” folks who live with disability or chronic illness. They may have convinced themselves they have to do something rather profound to make a difference. You don’t. You can make a difference with something as ordinary as smiling. Kraut & Johnston (1979) wrote a fascinating article on research they did on unspoken messages and their impact. Smiling is actually an emotion-filled message that you send – perhaps to someone who needs that message.

Guinness (2003) wrote a book, “The Call”. I believe we each have strong, in-born desire to have a purpose. Sometimes, we mistakenly believe we are too broken, too busy, too much of a “farm girl” to have a purpose; to make a difference.

Wrong.

For some reason, folks think they have to impact the world to make a difference. Making a difference, MAKES A DIFFERENCE, even in the life of ONE. Aknin et al., (2013) recently completed some fascinating research pointing to how much good it does an individual to make a difference in the life of one person or in one way. There are physical, psychological, and emotional benefits to making a difference… also called prosocial spending (Aknin et al., 2013). You may feel you have limitations, but having the opportunity and capability of making a difference is not one of them.

This has completely changed my outlook on my own life. I can make a difference.

… and so can you.

I love the lyrics to this song (hey! I warned you earlier I’m an 80’s tunes kind of person). The Oak Ridge Boys got this one right:

Did I Make a Difference?

I’m caught up in the push and shove
The daily grind, burning time, spinning wheels
I wonder what I’m doing here
Day to day, year to year, standing still

Somewhere there’s a teacher with a heart that never quits
Staying after school to help some inner city kids
A mother who’s a volunteer, a soldier in the fight
I can’t help but ask myself when I lay down at night

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

I’ve been working hard to make a living
And forgetting what true living is
Taking more than giving, something’s missing
Lord, how long can I go on like this?
There’s a lonely old man down the street
And I should be ashamed
I’ve never been to see him, I don’t even know his name
There’s kids without their supper in my own neighborhood
Will I look back someday and say that I did all I could?

Did I make a difference in somebody’s life?
What hurts did I heal? What wrongs did I right?
Did I raise my voice in defense of the truth?
Did I lend my hand to the destitute?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?

When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference?
When my race is run, when my song is sung
Will I have to wonder, did I make a difference?
Did I make a difference? Did I make a difference?

———–

Denise Portis

© 2015 Personal Hearing Loss Journal

Aknin, L. B., Dunn, E. W., Whillans, A. V., Grant, A. M., & Norton, M. I. (2013). Making a difference matters: Impact unlocks the emotional benefits of prosocial spending. Journal of Economic Behavior & Organization 88, (1), 90-95.

Kraut, R. E., & Johnston, R. E. (1979). Social and emotional messages of smiling: An ethological approach. Journal Of Personality And Social Psychology37(9), 1539-1553. doi:10.1037/0022-3514.37.9.1539

Where the People Aren’t

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"I Wanna Be Where the People Aren't"

“I Wanna Be Where the People Aren’t”

I recently saw the above picture on FaceBook, and since I love “The Little Mermaid”, (and because I know cats can be SO “offended”), I found this VERY funny.

As an Introvert, I often want to be where the people AREN’T. I, and most Introverts, love people. However, folks misunderstand what an introvert, and extrovert are.

Heck.

There is even a newly labeled “blend” for those who exhibit both introvert and extrovert tendencies (lest others think we have multiple personalities, or Dissociative Disorder). Evidently an Ambivert, is one who has both characteristics, often in dependence on their role in that specific environment.

The difference between an Introvert and Extrovert, however, is simply how a person prefers to RECHARGE. It has nothing to do with whether or not they like people. Extroverts recharge by being around others. Introverts recharge by being alone.

All this thinking about “versions” had me contemplating how each dimension is effected by acquiring a disability. As a person who is differently-abled, my mind just “goes there” automatically when I think about personality characteristics. Who copes “better” with acquired disability? An Introvert or Extrovert (or Ambivert)?

“Version” affect

Interestingly, research shows that people who are extroverted are more likely to acquire a disability that limits mobility or results in chronic pain (Malec, 1985). Evidently extroversion can be equated with higher risk behavior and decisions that may result in injuries associated with motor loss/coordination or chronic pain. Introverts, too, are diagnosed with acquired disability, but often with diagnoses that are “non-traumatic” (Malec, 1985). This doesn’t mean Introverts are not involved in motor-vehicle accidents, or risky behavior that results in injury. The research simply shows that extroverts are more likely to choose activities that could result in these types of disability. Frustrated in my search for information regarding “version” types and acquired disabilities more like my own — those that are the result of genetics and/or “unspecified contributors” for deafness and Meniere’s disease, I continued searching the research databases.

I came across an interesting study by Noonan et al., (2004), called, “A Qualitative Study of the Career Development of Highly Achieving Women with Physical and Sensory Disabilities”.

BINGO.

I figured I hit the jackpot with this search and find! What I discovered, however, has nothing to do with a connection between “version” types and successful coping with acquired disability. According to Noonan et al., (2004), successful coping includes  “developmental opportunities (education, peer influences), family influences (background and current), disability impact (ableism, stress and coping, health issues), social support (disabled and nondisabled communities, role models and mentors), career attitudes and behaviors (work attitudes, success strategies, leadership/pioneering), and sociopolitical context (social movements, advocacy)” (p. 68). The difference between those who successfully cope and are extroverted and those who successfully cope and are introverted, centers around social support. An extrovert is more likely to identify and ask for help from any peers or individuals within their environment and in so doing actively engage in demonstrative advocacy. Introverts are more choosy about who they enlist support from, but are often “background” advocates. This is supported by research from Ellis (2003) in findings that include the difference in how extroverts and introverts enlist support, openly or privately – respectively.

“Version” Types and Assistive Technology

Having lived with special challenges for more than 31 years, I have had the (privileged) opportunity to meet hundreds of individuals who are differently-abled. Networking through organizations such as Fidos For Freedom, Inc., Assistance Dogs International (ADI), the Hearing Loss Association of America (HLAA), the American Association of People with Disabilities (AAPD), and numerous other organizations, I have met both extroverts and introverts who cope well — and some not so well — with acquired disability.

Some discouraging research does suggest that extroverts are more likely to use assistive technology and devices (Johnson, 1999).

This sucks.

I struggled for so many years with invisible disabilities and challenges, that my “epiphany” moment of changing that… making the invisible very visible, still gives me psychological goosebumps. My introverted life changed when I determined that I would embrace technology and assistive devices. I use bright canes, an assistance dog, bling up my cochlear implant and have informative brochures with me wherever I go. You’ll notice I didn’t say my introverted self became extroverted. I’m aware of and fully accept who I am – an introvert. Yet, using assistive technology and devices (and canine) has dramatically improved mitigating my own disabilities. Extroverts are more likely to seek “tools” early on in a diagnosis that incorporates an acquired disability (Wressle, Samuelsson, 2004; Kintsch & DePaula, 2015). Once introverts determine that the benefit of using assistive technology and devices improves quality of life, they, too, are able to embrace tools that improve life with the downside of making them (perhaps) more noticeable.

In closing, can I just say, “I LOVE PEOPLE”? We are different yet, are alike. We react to things differently and yet similarly. We all love dogs. 

Cuz… well, that just makes sense.

Denise Portis

© 2015 Personal Hearing Loss Journal

Ellis, A. E. (2003). Personality Type and Participation in Networked Learning Environments. Educational Media International40(1/2), 101.

Johnson, D. (1999). Why is assistive technology underused? Library Hi Tech News, (163), 15-17. Retrieved from http://search.proquest.com/docview/201534320?accountid=14872

Kintsch, A., & DePaula, R. (2015). A framework for the adoption of assistive technology. Retrieved on November 24, 2015, from http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.124.3726&rep=rep1&type=pdf

Malec, J. (1985). Personality factors associated with severe traumatic disability. Rehabilitation Psychology30(3), 165-172. doi:10.1037/h0091027

Noonan, B. M., Gallor, S. M., Hensler-McGinnis, N. F., Fassinger, R. E., Wang, S., & Goodman, J. (2004). Challenge and Success: A Qualitative Study of the Career Development of Highly Achieving Women With Physical and Sensory Disabilities. Journal Of Counseling Psychology51(1), 68-80. doi:10.1037/0022-0167.51.1.68

Wressle, E., & Samuelsson, K. (2004). User satisfaction with mobility assistive devices. Scandinavian Journal Of Occupational Therapy11(3), 143-150 8p.

I’m fine. Really.

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“Never underestimate the lingering effects of a dash of spontaneous comfort.” (Greenlee, 2008)

Ugh! I hate it when I see unfinished posts and reminders to post to my blog. Writing always helps me. ALWAYS. Yet, sometimes I let “stuff” get in the way of coming here to write, sharing my heart and mind with any who will “listen”.

I’m weary. I’m so weary, in fact, I’ve forgotten to turn my filter to the “ON” position and when answering that habitual greeting, “How are you, Denise?” I’m blurting out… “Awful. Crappy. FINISHED!

Honest? Maybe. Correct? Well… not according to our society. When someone asks how are you, the age-old response is “Fine! Great! How are you?

Is it lying when you are responding with a customary and expected, “pre-recorded” and chirpy reply? I don’t know that I would call it LYING, but it is certainly

… the expected

… customary

… response.

There isn’t anything going on that is the CAUSE of my bleh. Perhaps I’m not getting enough rest. That seems to always have an impact on my bleh-meter.

Surprisingly, a major source of bleh-busters have been quick, yet heartfelt comments by someone I know.

“I care about you!”

“You made my day!”

… and a friend who posted on FaceBook this morning on behalf of EVERYONE reading that I laid claim to since I was one of those readers:

you are loved

Isn’t it amazing how a spontaneous, genuine word of encouragement can make a dreary day, brighter? These verbal “high fives” are sometimes quick phrases of encouragement. Sometimes someone simply checks in to see how I’m doing. These things matter. They matter enough that I know I want to do a better job of being more likely to share the same with others.

“Never underestimate the lingering effects of a dash of spontaneous comfort.” (Greenlee, 2008)

Denise Portis

© 2015 Personal Hearing Loss Journal

Greenlee, G. (2008). Postcards & pearls: Life lessons from solo moments on the road. San Diego, CA: Aventine Press

 

Does Not Play Well With Others

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I hesitate to even post about this topic because I’m sure to get a little backlash about this viewpoint. Because of that, you will see interspersed throughout this written confession, links of scholarly evidence and citations to peer-reviewed articles that will lend a little more credence to what I’m about to say. I don’t want it to be just an opinionated article, after all!

Confession: I Don’t Play Well With Others

Now if my mother is reading this, she is likely “nodding her head in agreement” but that is because her clearest memory of me is the bossy older sister, not at all afraid to confront people (they call me Vina Jewell Jr. in my family), and stubbornly opinionated. However, when you grow up in a small farming community and go away to college, there isn’t much chance your mother will be able to get to know the adult you’ve become.

Don’t get me wrong. Mom and I talk weekly. But a FaceTime call is a great deal different than seeing someone day in and day out. However, the fact that I don’t play well with others as an adult has nothing to do with the negative characteristics I hope to have left far behind me in my childhood.

As a 49-year-old woman who readily identifies as being differently-abled, “playing” often means quiet, reflective time, or interactions where I’m present but only “just”–in that I do not have to interact with those around me. For example, my husband and I will watch a movie together once in awhile. I’m a reader. I write. I research (by choice and not because I’m a doctoral student). I love sitting on the deck and staring out into the woods. I love to cuddle with my dogs.

Now some who read that last paragraph may think that I don’t like people.

Wrong.

I love people, and enjoy interacting with others. I believe anyone I work with will tell you that I am an eager team player who throws herself into volunteer work with passion and gusto. You see… I WORK well with others. Outside of class, I proudly advise three different student clubs and participate in a number of faculty/staff committees. I love this work. I love the people I work with, too. However, I’m working – not playing. I’m one of the lucky ones in that as a person who is differently-abled, education is a great career. People with skills, training, and education in other types of careers are not as lucky. Many people with disability or chronic illness find that in their chosen career they face both exclusion and discrimination (National Disability Strategy Consultation Report, 2009). I am extremely grateful to be a part of the education community, for I rarely face these issues.

So what’s the deal with my not “playing well with others”? Well you see? The things I mentioned earlier that are ways I unwind, decompress, relax, and “flourish in my happy place”, very few people are willing to do alongside me. (And that’s ok…) I have a few friends that will “hang out with me” and “play” with no expectations. We do not have to do a whole lot of talking. We just “are” – and are comfortable in silences and quiet places. The problem is that none of these friends live near me.

Hearing Loss and Background Noise

It may be different for folks with other types of challenges. As a person with hearing loss, I can tell you that one of the biggest barriers to living a happy and productive life alongside of others, is background noise. Some folks think that background noise is the same thing as white noise.

It’s not.

White noise is a steady (and unremarkable) buzz of sound. If you are as old as I am, it would be like the “snow” sound on a television channel currently off the air. When I was a kid, my older brother and I would sometimes be allowed to stay up watching TV, and we’d eventually fall asleep. When I awoke, the television screen would have “snow” with a buzzy kind of static-like noise. Background noise, on the other hand, is any extraneous sound that is heard while trying to monitor a specific sound. For folks with hearing loss, that specific sound is SPEECH while trying to screen out other sounds (and perhaps voices) from the environment. If I could burn calories for every minute I communicate with others in the normal world, I would not be 25 pounds overweight.

Background noise is the enemy of people with hearing loss. This noise even diminishes our ability to concentrate and form both short-term and long-term memories (Rugg & Andrews, 2009). Kenneth Henry (Neubert, 2012), postdoctoral researcher at Purdue, uses the analogy of numerous televisions. For folks with normal hearing, it would be like turning on a dozen television sets on different channels and asking the individual to concentrate on one show. It’s hard. It’s not at all enjoyable. It’s not something someone would ever do by choice.

Yet people with hearing loss must consciously make the choice to reach out to others, invest their time, energy, and focus just to communicate! It’s hard to communicate in a world full of background noise. It’s worth it. It keeps us from being isolated. It keeps us connected to others. It may keep us productive and working. There is a price to pay, however. The price tag is limited options for “play time”. In order to completely eliminate the WORK in listening, one needs a quiet environment. Friends tend to text one another with suggestions such as:

“Hey! Want to meet at Ruby Tuesdays after church today and eat together?”

“Let’s go shopping!”

“There’s a meet-up at the local Starbucks for mom’s frustrated with their adult children. You should come!”

“A dozen or so of us are going to go walking at the park with our dogs. You should come along!”

“We are all going to go get a pedicure! We are meeting at 2 PM”. 

This is not my kind of “play time”. Now occasionally (OK… I’m exaggerating – RARELY) I will go out and do some of these things. However, there are very few people I can ask to participate in what I really consider “fun”. Even when I go out with friends from Fidos For Freedom with individuals who have various disabilities it is hard. When you do not hear well, you can be isolated even when amongst folks who really understand disability. Folks with hearing loss “play” differently.

“Hey girl! Come over and sit on my deck and watch the squirrels in the trees with me, will ya?”

“I know this great place in the woods near my home where two streams converge. It’s a great place to sit and read a book. I’ll bring the bug spray!”

“Let’s go sit by the Chesapeake and pet our dogs while we watch the ships go by…”

Having a hearing loss as an adult – even when it is “corrected” by hearing aids and/or cochlear implant, the individual is certain to have a co-morbid  auditory processing disorder. This creates all kinds of communication issues that make it extremely difficult to enjoy communicating. According to Whitelaw (2015) “These types of communication issues may include difficulty hearing in less than optimal listening situations, reliance on visual information to augment auditory information, a reduced appreciation of listening to music, and difficulty understanding speech when the speaker is unfamiliar” (para. 1).

I have special programs on my cochlear implant that reduce background noise and allow me to zero in on the person right in front of me. I rely on these programs. (There have actually been times in extremely noisy environments, that I swear I hear better than my normal hearing counterparts). Even with this wonderful technology, I still have to concentrate. It’s not fun. It’s not “play”. It requires recovery time later. Is it worth it? 

Well if it wasn’t, I would never leave home… and I leave home a great deal and for a variety of reasons. Just because I CAN doesn’t mean it is easy. I’ve been alive long enough to know that important things are not always easy.

How to “Play” with Someone with Hearing Loss

If you know someone with hearing loss, please allow me to provide some “playing pointers”. You will note that these activities often revolve around just being in the presence of each other. They are activities that do not require dialogue every second of your chosen “together time”.

  1. Board games: It’s OK, to laugh and “chit chat” over a great board game. But… turn off the TV. Don’t have background music going. If there are more than two people playing the board game, don’t have individual conversations. Every spoken word is meant for everyone present. This keeps the person with hearing loss from having to deliberately ignore the sound of a conversation not meant for them. Please don’t think that people with hearing loss can enjoy “game night” with a big crowd. The folks in my small group at church had a “game night” (with all in the family invited) one night and my first thought was, “just shoot me now“.

2. Books, reading, and discussion: Book clubs are great! That is… if the discussion group is meeting in a quiet setting while discussing the chapters that week. Sitting in the food court of the mall and discussing what you read that week = NOT A GOOD IDEA. If you like to read, ask to spend some reading time with a person with hearing loss. You read; you don’t talk. It is difficult to express how meaningful it is to simply be in the presence of another.

3. Walks, hiking, boating, and other “outdoorsy” stuff: These activities can be great for folks with hearing loss. However, many trails and parks and lakes have become very populated. This means that the person with hearing loss may have trouble hearing you if they cannot see your face. Imagine kayaking with a person with hearing loss. If the kayaks are facing each other they will do great. This also means you won’t get anywhere because two kayaks facing each other cannot move. So enjoy the time together but don’t try to tell them all about the problems you’ve been having at work. Enjoy the hike. Enjoy the quiet of the walk. Enjoy the sound of the paddles hitting the water – and the far distant sounds of other folks out on the water.

4. Movies: I’m a “hearing again” person. This means that I can go to a movie, watch it, understand it, and give it a Siskel and Ebert “thumbs up” or “thumbs down” vote — just like everyone else. This doesn’t mean I can converse about the movie as we exit with the crowd. This doesn’t mean I can walk all the way to the parking deck and discuss everything we loved about the movie. Give me a safe place to stop moving. Allow me to concentrate on the conversation.

5. Gardening, Fishing, or ART: I love gardening, though do precious little of it I’m afraid. I had a great little “deck veggie garden” this year but wondered why I didn’t feel the thrill of it like I experienced it years ago. I concluded it was because I wasn’t pulling weeds alongside my father. I realized I wasn’t thinning plants while with my grandmother just three plants over. Be willing to spend some quality quiet time gardening with a person who doesn’t hear well but enjoys getting down in the dirt.

Fishing can be a great activity.

Art, too, can be a great opportunity to spend some time with an artsy hard-of-hearing person.

Some great resources: LISTENING IS EXHAUSTING.

SOCIALIZING WITH HEARING LOSS.

Not Hearing Loss – but “OTHER”

What if your challenges are not hearing loss. People who live with disability, chronic illness, and visible or invisible health problems may still “play” differently.

As a person with a balance disorder, I cannot go to the fair at the county fairgrounds and “play”.

I cannot walk to the park and “swing” on the swing set while discussing heart-to-heart issues.

If you want to spend time with someone who has specific challenges, ask them what they like to do and meet them where they are – within the parameters of what is “fun” for them. They may have a really hard time meeting you for some “play time” when it will be WORK for them. Ask how to accommodate them. I promise you that they really do enjoy being with you.

L. Denise Portis

© 2015 Personal Hearing Loss Journal

Road Signs

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I’m directionally challenged. When I say that, I mean that I even have trouble following SIRI-instructed GPS instructions. Where I grew up it was really easy to tell North from South and East from West. The grasslands of Colorado will do that for you. However, after I moved to the city after high school I’ve had trouble with direction! I remember being so surprised at all the street names. I mean… I grew up on Road W. (I’m not kidding). I lived 1.5 miles east of my grandparent’s home. I knew this because my hometown was North, and my grandparents lived 15 REA poles adjacent to us on the “sun setting” side. I know you think I’m making this up, but I was truly disoriented when I discovered directions included street names and not landmarks. Then I discovered traffic signs that we never had in Baca County! I mean… “TRAFFIC CALMING”? We hardly had a need for stop signs, let alone traffic calming signs.

Last week on a back road–a short cut, carefully taught by my significant other–I encountered a “Traffic Calming Ahead” sign. Now granted… this sign has likely been there all along. However, I just HAVE become confident enough to notice things like traffic signs as I’ve been too busy looking for that white house with the green shutters (cuz – yeah. I still don’t use street signs so please don’t tell my husband). As I passed the sign, my first thought was, “Whaaaa????

I’m very eloquent when talking to myself. As I drove a little further there was a big speed bump in the road. Do you know I almost had to pull over to the side of the road to figure on what a speed bump had to do with “Traffic Calming Ahead”? I forced myself to go on, while my thoughts just jumbled together.

After I figured out what it meant, my next thought was, “Heck. What happens when the sign says, ‘TRAFFIC DRAMA AHEAD’ “? I guess I hope I don’t ever have to find out.

I suppose it’s nice that the city thinks so much of drivers to warn them in advance when they are going to force a change in driving attitude. Wouldn’t it be nice if we had road signs as we traversed LIFE?

Road Signs

It took me awhile to figure out, “Bridge Ices Before Road”. Longer still to figure out:

turtle crossing

Someone, somewhere, has been very conscientious about what lies ahead. Why can’t we have that kind of system to navigate life? I suppose in a way we do. As a person of faith, I certainly have prayed enough asking for guidance and clear direction on decisions.

I’ve also “bent the ear” of close friends when I’m trying to make decisions or determine what to do. I don’t know about YOUR life, but in my OWN? I’m often left thinking, “What just hit me?” after I’ve already encountered the hazard. There was no warning. Don’t for a moment think that I’m not paying attention either. I’m probably hyper-aware as I’m prone to some OCD tendencies. So why do I so often hit the speed bump at full speed (or crush the turtle)?

Distractions

I have some folks in my life with some ADHD goin’ on. It kinda makes sense that they would miss signs. So how does someone who pays great attention to details, get distracted? Basically? I lose my focus. I may be driving along still thinking about:

helicopter

That I failed to pay attention to the next warning:

uneven

So when my car dropped off the uneven pavement on one side, I screamed like a girl. Thank goodness I’m a girl.

Not only do I tend to perseverate – causing me to be distracted, I also tend to “worry something to death”. How many times do we worry about things we cannot change? Take a minute and list all the things you really have no control over. I’ll check back with you in a couple of months.

As a person of faith I try to:

faith

I have to tell ya, though, I blow it again and again. I’m a “worrier”. I’m trying to do better because I’ve come to recognize it IS a big distraction for me. I miss warning signs, I become self-centered, I miss cues about other hurting people, and I step in doggie doo-doo (just laying it out there, folks).

The “Here and Now”

I’m having to learn to live in the “here and now”. I’m not very good at this. Don’t get me wrong… I think we should make plans and be prepared. Be an ant instead of a grasshopper. But I get awfully distracted about worrying about something that hasn’t happened yet. Worse? I worry about something that has already happened and can’t be changed.

I’m working hard to take one day at a time. I’m working hard to focus on the here and now. Example:

I’m fixin’ to walk into class and will be there for 50 minutes. How are my students today? Does anyone seem worried, distracted, tired, or ASLEEP? How can I make personality dispositions FUN? I don’t get any second chances. I don’t want to miss that one student looks shell-shocked, another likely high. (Dude? What have you been smokin’?)

I don’t get that 50 minute time segment back. It can be simplified beyond this, too. I’m trying to take more naps. I need them. I don’t know if it is because I’m “almost 50”, or if it is because I am fatigued from having to speech read and pay attention? I just know that I live for naps. If I have an opportunity to have one, I don’t want to lay there for 27 minutes of my hour available worrying about what I need to do. I’m learning to focus on calm – peace – rest – sleep.

My guess is that if you are reader of this blog, you have challenges of your own. You may be differently-abled or live with chronic illness or pain. Perhaps you are struggling with emotional health. Learning to ignore the distractions will help you focus – help you cope. It isn’t a cure-all. Occasionally you will still be taken by surprise. You are going to see and benefit from far more road signs if you are really paying attention. I hope you will work on it and if you have any tips, comment below! I know I take all the advice I can get!

L. Denise Portis

© 2015 Personal Hearing Loss Journal

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