Category: chronic disease

DisAbility Etiquette (part ONE)

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DisAbility Etiquette (Part ONE)

You cannot know how long I struggled with what to TITLE this piece! Having recently left a nearly 3-decades-long career in teaching (Psychology and ASL), I know how preoccupied folks are with being “inclusive” and equitable. Some even fully embrace being <GASP> WOKE. Folks who do not identify with any marginalized person group have shared with me (at least in the field of education and higher learning) that workshops, required certifications, and mandatory inclusive components more and more feel like “hoops to jump through”. 

I can tell you that as a person with disabilities, the last thing I want abled people to feel about inclusive practices is relief at having a checkmark on their HR records. I love the way Emily Ladau (2021) simplifies best practices with an easy to incorporate “rule” in interacting with those who are differently-abled. “The Golden Rule” is simple and easy to live out with true authenticity. Treat others in the same way you would want to be treated. “You don’t need to start overthinking everything you say or do. That just makes things weird. Disability etiquette isn’t about tiptoeing around us and treating us like strange, delicate flowers (in fact, that’s pretty ableist in and of itself.) It’s about treating us like full and equal human beings” (Ladau, 2021, p. 89). 

I truly believe (most) people mean well. Sometimes well-meaning intentions go awry, however. Yesterday, my husband and I went out to eat at a restaurant. My husband knows not to linger and hover over me as my service dog, Finn, gets me from “point A” to “point B” safely. Besides, he needed to make a “pit stop” so I walked out alone. As I navigated the last section near the door, I passed a booth with a family who had young children in it. Having lived the majority of my life with profound hearing loss, I do speech read fairly well. I saw one of the dads say to those at the table, “there’s a dog coming with a disabled person… don’t look, don’t stare, DON’T STARE”. Two of the three children (with age-appropriate ability to fully comply), dived under the table with one screeching, “I’m not looking at the dog! I’m not looking at the woman!” 

I tell you what, I was so cracked up I had to stop and lean against my cane for a second before giggling my way to the door. As I passed the booth one dad was doing a classic “face palm” while the other mouthed, “SORRY” as I hobbled by. When I got outside, I had to do a “cane lean” again as I seriously nearly fell over laughing. Those dads didn’t need to warn the kids about my coming by. Finn is gorgeous, smart, and talented. I don’t mind the “look at the dog!” comments. I know the dad’s comments were meant in respect, but please… just treat me like a normal person. I have bling on my cane, cochlear implant, and hearing aid. My dog is an 85-pound, solid Golden Retriever. I’m not invisible nor do I care to be. If someone says, “What a pretty dog” as I walk by, I simply smile and say, “Thank you! He’s amazing”. I don’t consider noticing something that is VERY noticeable as being rude.

Photo description: Large Golden Retriever with royal blue service dog vest under a table at a restaurant. 

To close out this two-part series on “DisAbility Etiquette”, I wanted to share some do’s and don’ts of two disabilities I have. [CHALLENGE: If you have other disabilities and would like to write for “Hearing Elmo” and share your own “do’s and don’ts” please contact me at denise.portis@gmail.com. I love having guest writers!]

In part two, I want to discuss some do’s and don’ts for people who use canes and service dogs for mobility challenges. In part one, I’d like to share some tips for interacting with people who have hearing loss. NOTE: I do “hear again” with a cochlear implant but these tips work for anyone with any degree of hearing loss, even those who are culturally Deaf.

DO:

  1. The Golden Rule (I won’t reiterate it again – smile)
  2. If you know someone has a hearing loss and you are hosting a workshop, meeting, or get-together, send an email or text to the person and ask what you could do to make the venue more accessible.
  3. Follow-up (especially work-related) meetings with an email to ask if they have any questions or missed any topics. (Careful with this one… don’t be condescending).
  4. If possible, secure captioning (transcription) for the meeting. Transcripts can be emailed to EVERYONE which only helps all present.
  5. Avoid small group activities where everyone is talking in small groups at the same time.
  6. If a person uses ASL, please provide an interpreter.
  7. Flicker the lights to bring the meeting to order. Yelling or wildly gesturing is rude.
  8. If there is a microphone present, USE IT. Don’t say, “my voice carries” or “I think everyone can hear me”. 
  9. Insist others use a microphone from the audience, or repeat any questions asked. 
  10. Write out on a white board or include a slide in a presentation if you are going to do any type of ice-breaker question, detailing what is being asked of participants. 

DON’T

  1. Announce or otherwise bring attention to any one individual who may have trouble hearing.
  2. Raise your voice to a near shout. 
  3. Turn your back to the audience to point to or gesture towards a screen or whiteboard.
  4. Talk to the interpreter of a culturally Deaf person, instead of talking to the person themselves. 
  5. Play music or “theme songs” in between speakers.
  6. Use videos without captioning turned on
  7. Talk at the same time someone else is.
  8. Over enunciate speech
  9. Chew gum or have other items in your mouth when speaking.
  10. Hesitate to ask the person with disabilities if you are not sure how to proceed.

Ladau, E. (2021). Demystifying disability: What to know, what to say, and how to be an ally. New York: Ten Speed Press

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

Is it WORRY or ANXIETY?

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As a disAbility advocate, I have blogged about the challenges of invisible conditions or diagnosis as well as those that may be very apparent (to even a total stranger). One that I don’t often write about is mental health diagnoses, surprising since I am a psychologist. 

Life is hard. It doesn’t matter who you are, we all have a tough time at some point in our lives. All of us, to a person, also worry about things. These can be big things or small things. These can be small things you’ve made into BIG things. My Mom used to tell me, “Denise, you can make a mountain out of a mole hill!” When I was very young (8-10 years old) I thought it was a complement about achieving MUCH. It wasn’t until I was a teenager, seriously struggling with “worry over little things” that I understood the true meaning. 

Worry is a normal part of life. We worry because we care. We can also have short periods of time where we experience true anxiety and that too, is normal. As a psychologist, I adhere to many APA (American Psychological Association) definitions and will provide that here for you. However, even these “textbook” definitions seem to lack something and want some fine tuning. I asked for definitions of WORRY and ANXIETY from one of my social media sites and found the “fine tuning” of these words very interesting. Let me provide those here (with permission):

“I feel as though worry can be a protective reaction meant to protect and caution beings. Whereas anxiety is an all-consuming concern that renders you unable to make rational determinations and hinders the decision making process”.

“To me worry has a specific target and is low intensity. I’m worried about my family driving in bad weather when they leave my house tonight. It’s a passing thought. I ask them to check in when they get home. 

Anxiety doesn’t start with a target it’s an intense physical feeling of dread and fear that I will then attach to everything. Everything becomes the target. Disaster planning starts for every possible thing that could happen and what resources I have to overcome those disasters.”

“Worry feels thought driven. Though anxiety can be, for me it tends to sort of happen. Like I feel a coursing of chemicals in my body rush through and a step behind that, I think and process.

“I think anxiety occurs naturally for everyone and can be addressed more readily. Whereas I think worry is more deliberate – choosing to ruminate.”

“For me, worry is usually specific to something, and anxiety is free-floating and more irrational. Anxiety is usually more long-lasting, and I feel more out of control; worry can sometimes be alleviated by coming up with a plan B or something similar to that.”

“Worry to me is over thinking negative outcomes which may or may not be real. anxiety to me is a negative emotional response to a known or unknown stimulus that’s results in body changes such as elevated blood pressure, significant increases in heart rate and breathing, nausea, trembling, inability to rationalize reality, etc.”

“Worry to me is specific and directed toward one specific task or interpersonal relationship. Anxiety is a general feeling of apprehension, fear, or regret about multiple life events.”

“For me also, worry is specific and anxiety is a pervasive feeling of dread. It’s a fight or flight response chemically but there’s no immediate threat I need to escape from or fight off. One time I had a severe anxiety reaction while sitting at my desk, and there was nothing happening of concern. I will say that when there are a lot of different things that I’m worried about, It can bring on a more pervasive anxious state.”

“Worry are the waves and anxiety is the current. Those are the things I see and unseen issues sometimes randomly driving and daunting my soul.”

I was very impressed with the numerous responses. 

The APA (APA, 2023) defines both as the following:

Worry: A temporary chain of thought that is a negative form of thinking and promotes distress.

Anxiety: n. an emotion characterized by apprehension and somatic symptoms of tension in which an individual anticipates impending danger, catastrophe, or misfortune. The body often mobilizes itself to meet the perceived threat: Muscles become tense, breathing is faster, and the heart beats more rapidly. Anxiety may be distinguished from fear both conceptually and physiologically, although the two terms are often used interchangeably. Anxiety is considered a future-oriented, long-acting response broadly focused on a diffuse threat, whereas fear is an appropriate, present-oriented, and short-lived response to a clearly identifiable and specific threat. —anxious adj.

At this point you may be asking, “Why are you detailing the difference between WORRY and ANXIETY”? Anxiety that continues and impairs your ability to live your “best life” is a mental health disorder and often needs help to improve. This help can come in the form of:

  • Self-help books or support groups
  • Licensed therapy/counseling
  • Anti-anxiety medications
  • “Natural” or “herbal” plant-based remedies

Again, short-term anxiety and worry is normal. It can even improve outcomes and produce positive change. For example, maybe you are worried about an exam so you study more thereby receiving a better grade. You temporarily feel anxious about a birthday party you are planning for your sister. Until the party is over, you may be anxious about everything going well because you care about her and want it to be a “hit”.

When anxiety begins to impair your ability to function normally (what is “normal” for YOU), you may need to seek the help of a counselor, therapist, or psychiatrist.

Living with disabilities, visible/invisible conditions, or chronic challenges are hard enough without trying to do so when you are also anxious. The National Alliance on Mental Illness (NAMI, 2023) states that anxiety disorders are the MOST COMMON HEALTH CONCERN in the United States. Note that they do not designate the diagnosis as a mental health diagnosis. This is because anxiety disorders impact us physically, emotionally, and spiritually. There is likely no other disorder with the power to do more harm—should we allow it to continue without seeking help. 

I know that as a person living with numerous disabilities, I often focus on managing and treating my physical symptoms. However, I have learned that failure to manage/treat my mental health ultimately means that my overall health worsens. This is part of the reason I advocate so strongly for people to take their mental health seriously. If I were not managing/treating my anxiety and depression, ALL other symptoms and conditions would worsen. 

Mental health disorders carry a lot of stigma and negative stereotypes. Let’s do our part by talking about and treating “mental health” as an important part of our overall health. This is the only way we can normalize mental health issues and promote taking care of ALL of who we are. 

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

Anxiety (2023). American Psychological Association. Retrieved October 2023 from https://dictionary.apa.org/anxiety?_ga=2.200114798.1388236549.1668603216-581175404.1667400704

Anxiety Disorders (2023). National Alliance on Mental Illness. Retrieved October 2023 from https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions/Anxiety-Disorders#:~:text=Anxiety%20disorders%20are%20the%20most,develop%20symptoms%20before%20age%2021.

“What About Me? Effect”

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Social media and access to information at large is a “game changer” for people with disabilities and/or chronic illness. Here are just a few reasons why I believe this is true:

  1. Connects you to information and resources about “what ails ya”. This yields truth to the “knowledge is power” phrase.
  2. Provides the means to share and connect with others struggling with similar issues.
  3. Provides a platform for advocacy and change.
  4. Alleviates feelings of isolation and loneliness.
  5. Enables individuals to stay connected to local, national, and world news, often with unmatched accessibility to this information.
  6. Allows differently-abled people to shop, pay bills, etc., in an accessible, safe space (home).
  7. Allows everyone access to education and learning knew skills – some of it free!

I also know that social media provides an outlet for connection, fun and entertainment, and can fill some hours when sleep seems unavailable to me. Like anything, however, social media platforms can be negative and challenging as well. “TikTok creator Sarah Lockwood (@sarahthebookfiary) refers to the tendency to make everything we see online about ourselves as the “What About Me Effect” (Borresen, 2023). Sarah posted a video about this “effect” in September and it really struck a cord in me. She states, “when someone sees something that doesn’t really pertain to them, or they can’t fully relate to, and they find a way to make it about them — or try to seek out certain accommodations for their very nuanced, personalized situation, instead of recognizing that maybe they’re just not the target audience for that thing” (Lockwood, 2023).

Like any population, even individuals living with disability or chronic conditions can get caught in a self-centered web of “what about me?” I’ve seen it happen in forums where someone posted information about a means to make a certain household chore or errand more accessible when living with a disability like their own. Instead of celebrating the ingenuity, a person with similar disability might not be able to accomplish the same because of demographics, or other subtle difference in diagnosis or condition.

Please do not misunderstand my point here. Equity and inclusion are important, however “what about me?” comments interferes with free speech; for a person in a marginalized population from freely voicing their truth. It is a very simple thing to chime in with perhaps another idea that would bring valuable discussion for accessibility options for someone with a slightly different disability. As a disability blogger and advocate, I recognize that I am an individual first. My experiences are just that–MY experiences. My experience as a balance-challenged woman may mean that I have some things in common with some, but am likely more different than similar to others with balance disorders.

Let’s be supportive of each other’s stories and life truths. We can learn something even if someone’s experience is different than our own. Even within disability related platforms, not every piece of content is geared towards every single person. We are unique and our challenges and gifts often are as well.

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

Borresen, K. (Oct. 12, 2023). The What About Me Effect is rampant on social media. Are you Guilty of it?. HuffPost Life section. Retrieved October 16, 2023 from https://www.huffpost.com/entry/what-about-me-effect-tik-tok-bean-soup_l_6525a8d9e4b0102e6963c51

Lockwood, S. (Sept. 14, 2023). Sarahthebookfiary [Video]. https://www.tiktok.com/@sarahthebookfairy/video/7278702404315680046

Microaggressions

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Image from https://www.rpharms.com/recognition/inclusion-diversity/microaggressions/disability

Microaggressions. What are they and how do they apply to people with disAbility and chronic conditions?

Meriam-Webster defines microaggression as “: a comment or action that subtly and often unconsciously or unintentionally expresses a prejudiced attitude toward a member of a marginalized group”.

Copied from the image above, I am re-listing some microaggressions here for those who may use screen readers.

  1. Overstepping boundaries, even when well-meant, such as assuming an individual with a disability is incapable or not aware when they need help. E.g. pushing someone in their wheelchair when they have declined help.
  2. “Otherisation” — seeing having a disability as ‘abnormal’ and denying them equal access to life experiences.
  3. Assuming someone with a disability & learning difference is incompetent.
  4. Making a “fuss” about needing to make and accommodate adjustments both in work and social.
  5. Intentionally not extending social invites to avoid making allowances for them, such as choosing a wheelchair friendly place.
  6. Using equipment labeled for someone with adjustment requirements when not required (accessible bathroom stalls, standing in the way of handrails, etc.)
  7. Not believing or accepting someone has a disability or learning difference, particularly if it is non-visible such as neurodivergence, sight or hearing impairment.
  8. Accusing people with a disability and/or accessibility needs of being difficult.
  9. Making assumptions about a person’s skills, abilities, and temperament based on stereotypes. This includes physical as well as mental /academic capacity. E.g. assuming the capacity of someone who is physically disabled.
  10. Not asking input into work or a project a person is involved in; not taking them seriously; and seeing only the disability, not the whole person.
  11. Being made to feel “other”. Neurodivergent people often feel as if they “didn’t get the memo” so ostracizing behaviors can enhance this feeling.
  12. Using a condescending voice to explain.
  13. Being actively ignored and excluded from meetings and group activities.
  14. Eye rolling, sniggering, or mocking someone with a disability.
  15. Not providing additional supports or reasonable adjustments as requested , so individuals are unable to fully participate, including in educational settings.
  16. Insisting people behave in neurotypical ways, e.g. such as maintaining eye contact–considering them to be rude if they don’t.
  17. Not being invited to senior meetings because they might not behave in a neurotypical manner.
  18. Interrupting someone when they are speaking completing their sentences because they’re “being to slow” making their point.
  19. Not understanding the challenges faced by neurodivergent individuals, which can prevent individuals from their best selves in meetings and interviews.
  20. Not greeting someone with a disability, assuming they will not know how to respond or talk to you.

A few of my own that I have experienced: (Add your own in the comments!)

21. Not facing someone who may have hearing loss so that they can read your facial expression, body language, and speech read better.

22. Assuming a person with disability can and should not be promoted because it will be “too much” for them.

23. Openly or secretly criticizing someone with disability when they are very disability focused and disability-minded.

24. Not providing impartial and equitable investigations into discrimination claims.

25. Assuming that providing things like captions, means that the person with communication challenges is now on equal footing with those who hear normally.

26. Not promoting a person with disability because they interview poorly as a result of disability (hearing loss, vision loss, cognitive issues, etc), in spite of a track record of excellence that warrants promotion.

There are other marginalized groups and diversity populations that experience microaggressions as well. I know that even I have at times said or did something that seems prejudicial. We are human and make mistakes. However, especially if a microaggression is identified by the marginalized person, we should take every means necessary to make changes and go forward with “less” prejudice.

One of the more disheartening truths about disability microaggressions, is that often the result of experiencing such can and will cause the individual additional harm. Stress alone can greatly exacerbate symptoms and conditions. I believe this is why so many “give up” following through with pursuing legal investigations. At least, it was true in my own case of disability discrimination.

So what can we do?

Keep doing all you can. After all, that’s all any of us can do.

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

What if… ?

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My husband teases me because my favorite movie genre is apocalyptic themes. My favorite book as a kid was “The Long Winter” in the Little House series because the circumstance and outlook was so dire! I’m a pessimist and very, VERY hard on myself. Even though I’m 57 and had decades of practice of “doom, despair, and agony on me” (let’s see if any of you catch that reference jingle), I have learned to change my “what if…” inner dialogue to promote happiness and health.

Persons with disability often worry, fret and are anxious about many “what if” scenarios. Things like:

What if I suffer another concussion? (I was so aggravated at myself to have to update my sign a week ago):

What if I become legally blind?

What if I have to have my cochlear implant removed to get an MRI and accurate MS diagnosis?

What if I get ALS like my Mother?

What if… ?

I mean seriously it could go on and on! I’m grateful my interests and subsequent training and education meant I pursued psychology. Yes, yes, occasionally I grieve being rejected by Hogwarts, but psychology likely saved me! Seriously! I use snippets of cognitive behavioral therapy (CBT) every SINGLE DAY! I know that I’m prone to cathastrophizing my life. I know this bad habit is detrimental to my emotion self and mental health. It also takes a toll on my physical health.

When I find myself perseverating on negative “what if’s…?” I have to deliberately pause and choose to say the opposite.

What if I go another year without any new concussions? I’m taking great pains to walk safely, work around the house safely, etc. That last concussion may have been my last!

What if the meds I am taking save my eyesight?

What if the MRI (after surgical removal of my CI magnet) shows a definitive MS diagnosis? Then I can find proper treatment!

What if I live as long as my Mom did (78) and die from “old age” and not ALS?

In CBT, you have to start with your thinker. If you can change your thinker, it will aid in changing your feeler (heart) and in turn change your behavior (anxious thoughts, depression, self-harm, etc.) Change your THINKER to change your FEELER to change your BEHAVIOR.

So there isn’t anything wrong with “what if…?” thinking. Just make sure most of your “what if’s…?” are positive thoughts and affirmations. It’s hard enough being a person with disabilities and invisible or chronic illness. Don’t become your own worse enemy. Cue the music and summon your Mission: Impossible chi and see if this CBT tool can at the very least improve your mental health and personal regard.

L. Denise Portis, Ph.D.

© 2023 Personal Hearing Loss Journal

You can do ANYTHING!  Well… MOST THINGS!

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I anticipate that what I write this week will upset some folks who live with disABILITY or chronic conditions. If you would, “hear me out” until the end of the post. If you still disagree, I can easily “agree to disagree” and even concede that the power of optimism is often the key to overcoming real obstacles.

My main point? Do not tell a person with disABILITY that: YOU CAN DO ANYTHING!

This standard platform statement is normally accompanied by volume and higher pitch, with a pom-pom smacked to the face of anyone not paying attention. Educators like myself sometimes misuse this encouraging statement. Administrators may assume the statement is standard for any mandatory attendance meeting, certain to help liberate the doubtful and unify the group, lighting them on fire with enthusiasm. 

Last semester I sat and cried with a student having to drop my class. Like me, she is a TBI survivor. Her dream job was to work in a big hospital and oversee support groups for individuals and families who are experiencing life with traumatic brain injury. She wants the “shingle”, the Ph.D., the training to really make a difference. I believe she will reach her goal. She will reach her goal after a longer road than most. There will be setbacks. There will be obstacles. I shared with her that it took me 16 years and a lot of outright stubbornness to finish school. Accommodations made the attempt more equitable but honestly, I shared, “it took not giving up and recognizing my pathway to goal was a longer one”. 

I have had short-term mentors tell me YOU CAN DO ANYTHING! (My long-term mentors had a more realistic approach). However, pom-poms, enthusiasm, and genuine hopefulness will never:

… allow me to hear normally.

… walk without a limp.

… have vertigo-free days.

… help me be as sharp at the end of the day as I am at the first.

… keep me from needing more sleep than others.

… prevent me from ever falling again.

… alleviate my communication challenges.

… prevent me from feeling isolated and left out occasionally.

… stop the loss of vision in my right eye brought about by 11 concussions.

… interrupt every single panic attack.

… defeat persistent depressive disorder.

… keep me from missing my Mom, the primary REALIST in my life.

Frankly, there are some things I CANNOT do. Any successes or “wins” are the result of stubborn persistence. Any recognitions or awards are from finding a different way to accomplish the same tasks. Many “end results” were not something originally targeted. There are things I CANNOT do and tasks I will NEVER be able to do. Instead, I have learned to set my sights on something obtainable. I have learned to align my goals with things that are possible. I have even learned to dream and “pin my hopes on” goals that are doable for even one such as I. In the end, most of us aspire to make a difference. If you find yourself looking around at the place your training, hard work, and experience have landed you thinking, “Well gee. This was a major detour but gosh darn it! I’m happy and I’m making a difference!” 

Perhaps the big DIFFERENCE we make was something outside our imagination originally. Reality redirected our purpose with an unexpected detour. Yet here you are, thriving…influencing… and KILLIN’ IT! Having a sense of real purpose looks good on EVERYONE. 

I have talked with students and colleagues hesitant to ask for some extra time or an equitable accommodation because they fear being judged that their performance is only possible through props others do not need. Y’all? There is a heck of a lot of difference between equitable accommodations and “hand holding”. This photo says it all:

I received an email from a follower of Hearing Elmo around Christmas. They are on disability, with limited transportation and even more limited opportunities. They shared that at times they are discouraged because they feel limited in what they can do. But folks? The opportunities this reader has are golden, the lives they touch are valuable. They consider their purpose and mission to advocate, educate, and touch just one life at a time. They support and encourage LGBTQ+ young adults with disability and act as a sounding board, a shoulder to cry on, and are a stout champion to a truly marginalized group. 

Are you an abled administrator, director, co-worker, or friend? I encourage you to use realistic encouragement and language as you lovingly support the folks in your life who have special challenges to overcome. Having YOU helps them overcome. Be careful not to balk at a seemingly unrealistic goal. If people with disability are anything y’all, they are realists! If you are blessed with an invitation to chart a path alongside someone who is determined, then LISTEN, research, encourage, and advocate on their behalf. 

A well-meaning friend and I had our behinds parked on a bench on campus catching up with each other. Some geese flew overhead, flying in a perfect “V” and heading South for the winter. My friend said, “Wow, what a racket!”

I grinned at her and said, “Well I don’t hear anything!”

Abashed, she said, “Well at least you can see them, right?”

I said, “Sure! And I do LISTEN with my EYES sometimes!”

However, unless a big ol’ goose comes waddling up to my side and honks right in the direction of my cochlear implant, I’m not gonna hear it’s unique sound y’all. This doesn’t mean that I do not have a purpose since I cannot hear a goose honk from high above while flying in formation. My disAbilities make me uniquely qualified and effective to make a difference in the lives of those in Denise Portis’ sphere of influence. Y’all have a sphere too. Manage it. Own it. Thrive. Because all of us are pretty…

FABULOUS.

L. Denise Portis, Ph.D.

2023 Hearing Loss Journal

When Overcoming Makes You Really Tired

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Photo by Alina Levkovich 

There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).

I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.

“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.

Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).

This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.

We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.

L. Denise Portis, Ph.D.

2022 Personal Hearing Loss Journal

Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.

Psychology Today (n.d.). Mindfulness. https://www.psychologytoday.com/us/basics/mindfulness

University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/

Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.

Happy Trails to You

Published on by hearingelmo5 Comments
Dale Evans and Roy Rogers

After someone you love dies, you may discover some things about the person that you didn’t know. My Mom loved to sing. Because her generation (the “Silent Generation” 1928-1945) was different than mine (“Generation X” 1965-1980), the songs she would sing at breakfast (a normal occurrence) and in the evening were oldies. Breakfast was usually “Mockingbird Hill” (When the sun in the morning, peeks over the hill…).

When Mom was diagnosed in July of 2021, my siblings and I began to hear from her former students on FaceBook. As the ALS progressed and began to take away basic functions, we would read to her what her former students were saying. It was all good and brought many smiles and happy tears. While she could still talk, she would relay some story about the student that posted and it was as if she took us by the hand and walked us back to her teaching days. Mom was defined by what she did, a teacher. It was her real joy and privilege to teach for over thirty years.

One recurring theme from former students was that she would sing the first few stanzas of “Happy Trails” as they left class at the bell. Though knowing this song was a favored one, we were still shocked to learn she sang in public too!

I have been teaching now for 28 years. I have taught middle school, high school, and college-aged students. Having heard from so many of Mom’s former students since her diagnosis and subsequent death, it got me to ponderin’ — “what would my students have to say about me?” “Would they even remember me?” (Mom had been retired for 16 years at her passing).

Yesterday was the first in-person convocation we have had at Anne Arundel Community College since 2019. A recurring theme of the various administrators was to remember that the smallest things could make a difference. Even a taped message from the incoming SGA (Student Government Association) president reminded us that the “small things matter”.

I am a big believer in the difference “small things” make. For you see? It has been small things each and every day that have encouraged me to continue hiking that trail. My trail is not always happy, but it is a scenic and worthwhile hike.

People with disAbilities often express their concern that they do not matter anymore. Or perhaps they feel that with their disability, they can no longer make a difference. Many of you already know these things about me, but let me summarize some of my own challenges:

  1. Late-deafened (25 years on)
  2. Post Concussive syndrome (TBI as a kiddo and 11 concussions since)
  3. Meniere’s disease
  4. Vestibular disorder
  5. Mental health diagnoses (Panic Disorder and PDD)
  6. 65% blind in my right eye (concussions)

If I had a dollar for every time I considered giving up, I could retire now! I’m no super hero. I’m not anything special. What I am is persistent and determined. Stubbornly resolved to connect at least one time each day with someone who needs encouraged, loved, high-5’d, heard, or acknowledged. Notice that none of these things require being an abled person! I know that many of my readers are people with disability or chronic illness. MANY have expressed to me the dismay they feel in being disabled, by NOT being able to make a difference. Their physical or mental health diagnoses have meant they have learned coping skills or learned a new way to do things. However, many still FEEL disabled because they feel as if these diagnoses take away opportunities for them to MATTER.

My friends? Please do not ever discount the difference it makes for you to be kind to the cashier at the grocery store. Smiling and saying a kind thing or two to the delivery person may completely turn their day around. Being kind and friendly to that young wait staff person can make a day that is crushing them seem not so burdensome. Send an encouraging email or message to someone you know is struggling. It can be life-changing for them. Make a phone call to someone you know who feels isolated. Take advantage of the way social media platforms “level the playing field” for those with disabilities through CONNECTING them with others. One small comment can make a difference.

I know this for a fact! I know because the

Deborah’s, Wendy’s, Kellie’s, Lisa’s, Candice’s, Sara’s, Stephanie’s, Kyersten’s, Felicia’s, Kimberly’s, and SO MANY more have taken 15 seconds to type me a message that encouraged me and rekindled my desire to keep on keepin’ on. I’m not saying it is EASY. For some, it may mean real “spoons” are used up (The Spoon Theory).

ALS is a horrible, terminal disease. My Mom suffered and died a terrible death. I’m still dealing with the fall out and likely will for the remainder of my own life. But do you know at the end, Mom could only roll her eyes, grin, and wink, but she did that as her hovering children did their best to love and care for her? She could speak some, but it was a real chore to understand, even with picture, word, and alphabet cards to assist while she could still point. Yes. There were days with tears and “why God?” conversations. Yet while DYING she continued to make a difference. These past 12 months cemented an already steadfast “heart beat” for me. NO MATTER WHAT, I can make a difference to someone. In my work as a suicide prevention and awareness advocate, one of my favorite sayings is “Your voice is your power”. Use it.

Choose to sing “Happy Trails” to someone upon departure. Choose to smile and say, “I truly hope you have a great day!” Sign to someone “happiness is a choice”. Send that email to a struggling soul, “I’m thinking of you today”. You have a purpose. It doesn’t matter how many disabilities or challenges you have. You still have the power to make a difference. This is your super power. Use it. It matters. Happy trails to you…

L. Denise Portis, Ph.D.

  1. Deb Marcus Tilevitz's avatar
  2. hearingelmo's avatar
  3. Janet McGettrick's avatar

    I love this article. You mentioned that you’re a former teacher. Have you retired?

  4. hearingelmo's avatar
  5. Laurie's avatar

    Did you know that the word ASSUME means an “ASS out of U (you) and ME? I really appreciate this…

L. Denise Portis, Ph.D.

2

Just Being Totally Honest Here…

Published on by hearingelmo1 Comment
Mom, Diane (my little sister from Texas) and Me 2021 Thanksgiving Day

One thing I’ve often written about here from the viewpoint of someone living with disabilities, is that one of the hardest things to cope with is simply all the “normal” life experiences EVERYONE deals with, but dealing with it with disabilities.

I have a large network of peers who also write and advocate on behalf of the disability community. You would think God in His infinite grace, would allow people already dealing with a lot to be cut some slack with other kinds of challenges. That isn’t how it works though. “My people” often testify and share how hard life has been for them recently. People with disabilities still face the loss of loved ones, sickness (flu and COVID – aargh), break-ups and relationship implosions, job loss, traffic tickets, power outages, and running out of toilet paper! We don’t get a pass on tension headaches, occasional stomach upset, stubbed toes, or WIFI troubles.

Don’t get me wrong! I’m the first to stand on a soapbox and shout to the world how wonderful and worthwhile LIFE is. That doesn’t mean that life isn’t sometimes very hard, and it doesn’t mean that it doesn’t take work. If people with disabilities have one advantage over those who do not live with challenges, perhaps it comes down to these two things:

  1. Experience has us recognizing our limits much quicker and more reliably than those who do not live with disability.

2. We are more likely to ask for help.

Today, my Mom took a fall (or two) just trying to do some normal daily activities. ALS is an unforgiving disease and it is always progressive. Mom has bulbar onset, which means early on it impacted her speech and fine motor skills. It is now impacting mobility as well, however. Hence, the falls today while doing normal everyday activities. My little brother texted while a little freaked out and I calmed him down. Then I proceeded to freak out myself.

Immediately after finding out about Mom’s fall and trying to get a grip on next steps, I went outside to my back porch. We are having very un-December-like weather and the dogs were romping in the yard. The sky was blue and there was a nice breeze. This place is usually like an oasis to me. Instead of enjoying the moment, however, I marched to the edge of the porch, looked up and stuck my finger at the sky while semi-shouting,

“Stop it! Pay attention! My Mom is getting hurt!”

Had a neighbor been watching they may have thought I’d lost my mind. I didn’t care and HE knew Who I was talking too with a little stomp to my foot, with finger pointing somewhere in the direction of where I imagined His face, and shouting about the injustice of it all. God knew I was fussing at Him.

After my little conniption fit and about five minutes of bawling my eyes out, I realized how silly it was to talk to God about what is “fair”. I mean life just IS NOT. We were never promised a life of FAIR experiences.

We are able to learn from experience, and what I have learned is that reaching out for help makes a difference. So I called my little sister in Texas and I texted my Mom’s sweet Monday-Friday caregiver, Sarah. It helped. We have a plan. It gave me a little hope and encouraged me.

My friend, don’t be afraid to rant to God. He can take it and frankly if anyone knows about Their loves ones suffering and things not panning out in a “fair way”, it’s God.

Don’t avoid reaching out for help. The reality is that we are allowing others to be a blessing to US and to help. I tell myself that by not reaching out, I am robbing someone of that opportunity to make a difference in my life that day.

Just being totally honest here, but I yelled at God today. I survived because He gets it. He really does.

L. Denise Portis, Ph.D.

2021 Personal Hearing Loss Journal

Support

Published on by hearingelmo1 Comment

I first saw this Willow tree in “all its glory” when we first moved here in 2015

I really love living in Anne Arundel County. When we first moved to our “forever home” in 2015 (worthy of this auspicious title because we finally found an affordable and accessible home), this Willow tree was huge! Located on a nearby farm that I drove by every single day, this tree shaded a large area of pasture that 10-15 cows called home. You can tell by the size of the original trunk how massive this tree was in its prime.

I do not know if my admiration and affection stemmed from the fact the tree was simply beautiful, or that it bordered this idyllic version of a small farm reminding me of my childhood. Regardless, I became really attached to this tree. I passed it on the way to work and on the way home from work. It was hard not to get distracted by which cow or calf was scratching its bovine butt or shoulder on the trunk of this tree as I drove by each day.

One day I noticed that the owners had added some wooden supports on one side. I had noticed the tree had a slight “lean” to it all along and was curious about the farmer’s attempt to provide assistance against the “lean”. After twenty minutes of “googling” Weeping Willow trees, I discovered that their shallow root system can mean a tree can be at risk in high wind areas or areas with high water tables. I was actually surprised the farmer chose to do this as the effort provided support, but certainly was not aesthetically pleasing. It was the only provisional shade in the pasture, so perhaps the owners sought to prevent a problem before it happened. In this way, the farmer insured necessary relief from the heat of the day for the small herd.

Wouldn’t ya know, last Fall “something” happened to this tree. I didn’t see it happen so could only guess as the trunk was split and the vast majority of the tree lay in pieces on the ground. It made me very sad. Don’t ask me why, but I was a little weepy about the broken Weeping Willow! Over the next week I noticed branches being cut and hauled away. I was surprised to see the core trunk of this once stately giant with graceful crown of “weeping” branches still intact. In fact, it continued to be supported.

I like to think this survivor tree held some kind of sentimental value to the farmers. Perhaps it was a more pragmatic reason such as Willows grow quickly and it provided necessary shade to protect the cattle on a day with unforgiving heat and humidity. Still, I prefer thinking it was for heartfelt reasons they chose to do what they could for this “little engine that could” tree.

I watched all winter. Each day I drove by and thought this tree is DEAD and DONE. Much to my surprise, this Spring the tree began to grow again. It looks a little awkward and perhaps even unsightly with the obvious man-made supports in place. Yet it sprouted new branches with blooms and then leaves. I have a feeling this tree is going to surprise us all.

Anne Arundel Community College, like other schools nationwide, was forced to move all instructions online this Spring. Is it because I’m late-deafened that I really prefer interacting with my students face-to-face? Maybe. I know plenty of instructors with normal hearing that were dismayed by the daunting task of providing an engaging learning environment.

Many teachers provide a little blurb in their syllabus and perhaps a “3 minute mention” about accessible options, assistance and supports, and disAbility services. I realize it is likely because my heart beats within the chest of someone who lives with disAbilities and chronic conditions, but to me the issue should not be mentioned once and then never again. For one thing, there are numerous conditions that do not classify as a disability yet students still benefit from support. There are mental health diagnosis and physical chronic conditions that may make it difficult for a student to be “all in” during classes.

This is why I talk about it… WEEKLY. I remind students to come to me if they need support. Perhaps they need a face-to-face meet in my office. After quarantine, it may mean they needed a Zoom call so that they could talk. Prior to the social isolation restrictions in place, I used the ‘RED PAPERCLIP‘ system. My students have nameplates that they toss in a folder at the end of class. If the red paper clip on the back of their name plate was moved to the top, I contacted them via email and we set up a “text meet”, office hours conference, or FaceTime call.

After Spring break turned into a 3-week long, panic-filled transition period for instructors, I thought long and hard about what to do in place of my “RED PAPERCLIP‘ system so that students could still let me know they needed my support for something. These “somethings” included things like:

  1. A 2-3 day extension on a due date
  2. A pep-talk
  3. A listening ear
  4. Further information about the details of a project if the written instructions alone were not enough
  5. Resources and/or connections to virtual mental health practitioners (I’m a teaching psychologist and not a counseling psychologist).
  6. Resources for food, shelter, etc.
  7. Advice and discussion about transfer decisions
  8. Extra credit opportunities
  9. AND MUCH MORE

So what to do if I didn’t have nameplates turned in after class and a visual check of red paperclips? Mid-semester I could only come up with staying in close contact (every couple of days) via email, reminding them of my availability and desire to assist. Do you know during the last 8 weeks of the semester, I received a half dozen texts from students who only sent a picture of a red paperclip? I received OVER a dozen emails from students with “red paperclip” in the subject line of their email. It made me smile. Well… it was a weepy smile, but a smile nonetheless.

For whatever reason, the farmer down the road from me, decided to support this willow tree. Will it ever be self-supporting again? I can’t answer that. Yet with support, this weeping willow provides something needed and necessary to a small herd of cattle. It is growing back quickly. Who knows what it will look like next year? Perhaps it provides some sentimental value to the owner as well. What I can tell you is that without the man-made supports in place, this tree wouldn’t have had a chance at a comeback.

My students know that I get “having a bad day”. I don’t allow them to abuse it but they know they can email me for some additional supports or “course grace”. I am also very transparent about my own good days, bad days, and having to push through ON a bad day. You see? I want to model good self-care. I also want to model the strength required to ask for assistance. Heck, I am “fiercely independent” using cochlear implant, captioning apps, service dog, and cane. However, I have learned there is no shame in asking for assistance. In fact, there is strength in asking for assistance and support.

Do you have people in your life right now who need support? If you don’t, you aren’t looking. We all need some support at different times in our lives. It may be a small “help”, but it can mean the world to someone at a time in their life when they just “need a little something”. I also encourage you to learn to ask for support. I assume many of you who are long-time readers of “Hearing Elmo” have disabilities or chronic conditions. Having extra challenges doesn’t mean you aren’t capable of helping others. It also means that you may need a little support from time to time. Learning to ask in a cheerful, matter-of-fact way goes a long way in positive advocacy. I have learned that many friends, colleagues and even total strangers do not know HOW I need support unless I inform them. It may sound like:

“Excuse me, could you pick up that credit card that I dropped? My service dog has trouble with that unless it is on carpet”.

“The automatic door button doesn’t seem to be working. Could you open and hold the door for me?”

“My fingers are particularly numb today. Do you mind picking up the papers at the end of each row?”

“The elevator in this building is not working today. Can you walk a few steps in front of me as I descend?” (Finn, my service dog, does all the work. However, I need a visual peripheral block to keep from feeling wobbly).

“Can you talk into my phone so my app can caption your voice? There is so much background noise in here I cannot hear you”

“Do you mind carrying my tray from the register to a table? With leash and rolling bag in hand, I cannot manage carrying that safely”.

I have never NOT had someone willing to help.

So keep an eye out for leaning willow trees. Pay attention to any “red paperclips” on the face of or in the body language of someone you meet. In small (and sometimes large) ways, we can make a difference.

L. Denise Portis, Ph.D.

©2020 Personal Hearing Loss Journal