Without any doubt or hesitation I can say with real conviction that I never thought this day would come. A lifelong disability advocate and writer, I assumed I would write through Hearing Elmo until the end of my life. I do not want to make a really long and detailed exit, but the “short version” is that my health has significantly declined. The decline is so impactful, I am no longer working and am struggling to thrive under a new set of circumstances and challenges.
I will still be writing, but likely only through occasional posts on FaceBook and Instagram. If you do not yet follow me on these social media venues, please connect today!
Pictured: Close up of 5-year-old English Cream Golden Retriever, Finn with partner/author Denise Portis in background looking over Finn’s shoulder into the camera lens.
In May of 2023, I was forced to quit my job due to declining health and progressive disabilities. If you throw in the facts that teaching psychology, mentoring students, disability advocacy, and suicide prevention were my life’s calling…. my PURPOSE, it stands to reason I have not adjusted well. My disabilities spiraled out of control after two semesters of incredible stress, anxiety, and yes – discrimination. The toll was SO HIGH, in fact, I had to drop legal proceedings because I knew that by the time my case was heard, I would likely be dead. That sobering reality made me quickly determine, “what is really important here?”
I wanted to argue that my PURPOSE was important. For 27+ years my identity was wrapped up in being a teacher, a disability advocate, a disability mentor, and making a difference in my little part of the world. Suddenly, just to survive, I was at home and only leaving for doctor appointments. My coworkers were my third service dog and two family pet dogs.
In my mentoring platform, one of my “go to” topics was always:
FIND YOUR PURPOSE. PURSUE IT WITH ALL YOU CAN WITH THE ‘SPOONS‘ YOU HAVE.
As every disability and related health concern worsened, I struggled with a new disability that I had never had to deal with before.
Hearing loss and hearing with bionics? Easy-peasy.
Mobility limitations and post-concussive syndrome? Piece of cake!
Vestibular disorder and vertigo? BRING IT ON!
Losing 68% of my vision in my right eye and no longer able to drive? *brain and heart implode*
My anxiety shot “through the roof” (though my lifelong depression is actually very stable and “good”… one of those things that makes me go “Hmmmm”). I had poured my life into a place and a community to find myself suddenly WITHOUT those things; without a purpose. At first I struggled and wrestled with trying to figure out a new purpose. But y’all? When your life’s purpose is the heartbeat of who you are as a person, provides the means to keep you going… how exactly do you let go of that?
You don’t.
I am not the first person with disability and – yes – passion, to not be able to do what I wish I could, what I used to be able to do. I am not the first person with disability finding themselves forced to take a breather and re-prioritize. I am not the first person with progressive disabilities to actually have that progression completely change my disabled self. For those of us that have had to leave a professional career, we meet a new antagonist named “Loneliness”. It sucks to go from having people to NOT having people.
As I struggled and prayed, and cried about finding a new purpose, it hit me one morning. As a “fall risk” and concussion patient, I avoid being hit as much as possible. However, this time the knock up the side of the head was a eureka kind of moment; an epiphany of sorts! I don’t need a new purpose. My purpose has always been that which stemmed from a life-changing “Ebenezer” moment.
“If you only make a difference in ONE, that difference is profound, indelible, and enduring”.
I do not need a new purpose. My purpose hasn’t changed. My audience may have changed. The manner in which I work and advocate may have changed, but my purpose has not.
Do you ever feel SO disabled, bound by the constrictions of your own health challenges and limitations that you feel worthless? Do you feel like you are purpose-less? Wilder (2019) explained it well when he said, “What we do does not determine our value as human beings, but at the same time, what we do is a healthy part of the human experience. Purpose allows people with disabilities to participate in that part of the human experience if employment is currently not an option for them. Participation is important because doing something usually makes someone a part of something. That not only boosts self-esteem and self-worth, but also reduces isolation and loneliness.” (Wilder, 2019, para. 5).
(If you haven’t read The Spoon Theory, see it in its original form here. I talk about being a “Spoonie” a great deal). If you do not have enough spoons to work or “do” with measurable results, you still may have a purpose. Wilder (2019) goes on to say, “Sometimes a severe disability can leave a person with few options. In those cases purpose can be found in being a good son or daughter, brother or sister, mentor or parent, and friend or neighbor. Being a positive presence in one’s family and community is truly a noble purpose. Achieving it can be as simple as participating in a healthy relationship with another person to the best of one’s ability.
The bottom line is that people with disabilities who can do something; need to do something. The mental and physical health benefits alone make it necessary. Replacing isolation with participation leads to better relationships, and happier and longer lives. People with disabilities have a lot of things taken away from them. However, a purpose is difficult to take away from someone – and it is a great way to take some of those things back.” (Wilder, 2019, para. 8-9).
My purpose hasn’t changed. A purpose keeps our brains firing, our heart beating, and lungs breathing.
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:
The Golden Rule (I won’t reiterate it again – smile)
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.
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).
If possible, secure captioning (transcription) for the meeting. Transcripts can be emailed to EVERYONE which only helps all present.
Avoid small group activities where everyone is talking in small groups at the same time.
If a person uses ASL, please provide an interpreter.
Flicker the lights to bring the meeting to order. Yelling or wildly gesturing is rude.
If there is a microphone present, USE IT. Don’t say, “my voice carries” or “I think everyone can hear me”.
Insist others use a microphone from the audience, or repeat any questions asked.
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
Announce or otherwise bring attention to any one individual who may have trouble hearing.
Raise your voice to a near shout.
Turn your back to the audience to point to or gesture towards a screen or whiteboard.
Talk to the interpreter of a culturally Deaf person, instead of talking to the person themselves.
Play music or “theme songs” in between speakers.
Use videos without captioning turned on
Talk at the same time someone else is.
Over enunciate speech
Chew gum or have other items in your mouth when speaking.
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
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.
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.
“Otherisation” — seeing having a disability as ‘abnormal’ and denying them equal access to life experiences.
Assuming someone with a disability & learning difference is incompetent.
Making a “fuss” about needing to make and accommodate adjustments both in work and social.
Intentionally not extending social invites to avoid making allowances for them, such as choosing a wheelchair friendly place.
Using equipment labeled for someone with adjustment requirements when not required (accessible bathroom stalls, standing in the way of handrails, etc.)
Not believing or accepting someone has a disability or learning difference, particularly if it is non-visible such as neurodivergence, sight or hearing impairment.
Accusing people with a disability and/or accessibility needs of being difficult.
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.
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.
Being made to feel “other”. Neurodivergent people often feel as if they “didn’t get the memo” so ostracizing behaviors can enhance this feeling.
Using a condescending voice to explain.
Being actively ignored and excluded from meetings and group activities.
Eye rolling, sniggering, or mocking someone with a disability.
Not providing additional supports or reasonable adjustments as requested , so individuals are unable to fully participate, including in educational settings.
Insisting people behave in neurotypical ways, e.g. such as maintaining eye contact–considering them to be rude if they don’t.
Not being invited to senior meetings because they might not behave in a neurotypical manner.
Interrupting someone when they are speaking completing their sentences because they’re “being to slow” making their point.
Not understanding the challenges faced by neurodivergent individuals, which can prevent individuals from their best selves in meetings and interviews.
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.
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.
Stella Jane Young (24 February 1982 – 6 December 2014) was an Australian comedian, journalist and disability rights activist.
Several years ago, when working at a local community college, I participated in “The Soapbox Sisters”. I chose to read a speech by Stella Young. One of the many things this disability activist accomplished in her short yet impactful life, was coining the phrase “inspiration porn”. At least, Stella was the first one credited with the phrase.
In the beginning, “inspiration porn” was defined as: “an analogy with pornography, in that the material is perceived as objectifying disabled people for the benefit or gratification of the able-bodied.[2][3] Inspiration porn may be seen as a form of ableism“(2023, “Inspiration Porn”, para. 1).
Through the years, however, the phrase has changed to mean much more. This post talks about one of those forms of “inspiration porn”.
I love watching captioned “shorts” (shorter videos) about service dogs, people with disabilities, cooking, dog training, and more! I’m not nearly geeky enough to understand how or even why when you watch a certain kind of video, more of the same will show up in your queue to enjoy. This is how I happened on this user and popular videos. See below for an example:
I won’t flood you with more videos showing similar situations, but if you search for “social experiment” or “helping the disabled” you will get your “fix”, trust me. As a psychologist, I am fine with social experiments used in a scientific way to promote research in disability studies. I do understand that videos of this sort are used to inspire people in noting the good in humanity. However, it has become “inspiration porn”. An article in Forbes (Pulrang, 2019) best explained the evolution of the term in my opinion; “portrayals and uses of disability that share one or more of the following: sentimentality and/or pity, an uplifting moral message, primarily aimed at non-disabled viewers, and Disabled people anonymously objectified, even when they are named” (para. 4).
If a person with disability chose to participate in a social experiment, I’m “all in”. Yet these videos rarely focus on a REAL person with disability, and the emphasis is on “how great humanity” is in assisting the fake actor. The celebration is all about how “kind” that abled person who assisted is and how great are we as humans? “Hope for Humanity”. Ugh.
Just UGH.
A true focus of inspirational disability videos should be how abled folks can support true activism and advocacy. How about backing universal design and making ALL spaces, accessible spaces? What would be really wonderful is if people with mobility challenges had a way to see the Lincoln Memorial without crawling up the steps. Or if people could visit a park and actually walk the same trails everyone else does. How about making straws and utensils that can be used by all people no matter what their fine motor skill function is?
How about being inspired and impressed by a person with disability who does their job really well? How about putting a thumbtack in the epiphany that you have forgotten your friend with a disability even has a disability because they are so NORMAL?
Wow! This photo is from 1972. I was in a body cast from the chest down and had to sleep a lot. Prior to the TBI, I slept on the top bunk in a room I shared with a sibling. There was no lifting me that high so I spent much of my recovery on the couch. Mom slept in a nearby recliner. Traumatic Brain Injury as a child meant that my saying “I don’t remember my early childhood” wasn’t at all unusual to declare. Even abled folks in their 50s say, “I can’t remember back that far”. My parents worked hard in my rehab and by third grade I was back in school. I would eventually become deaf and acquire a vestibular disorder, but I had a terrific childhood living on a farm in rural Colorado.
Fast forward 50 years. TBI, like many traumatic injuries, is “the gift that keeps on giving”. I don’t even mean that in a particularly snarky way, as my disabilities have opened up so many opportunities for me during me life. The downside, however, is that when the brain is injured in a significant way a survivor will always have repercussions. For me, it meant 11 concussions, broken fingers, hands, toes and numerous hospital visits. It has meant learning disabilities and cognitive challenges. It meant that it took me 16 years to finish all my degrees. It has meant a very real struggle to stay on top of serious depression and anxiety.
Having fought, struggled, and persevered, having cried, grieved, and given up SO MANY TIMES, on this side of having survived 50 years, I can say “My Life Matters“. For over 3 decades, I have used something “bad” for something very, very GOOD. I am an advocate, a teacher, a passionate voice for those who often have no voice. My TBI gifted me with my “calling”, and became the impetus to fight the fight for those with disabilities.
I am one of the lucky ones, however. Are you a parent? Research and gear up with all the knowledge that you can about how to keep your child’s head safe in play, team sports, and recreational activities. Treat concussions seriously, even mild ones. Don’t hesitate to enjoy life, but enjoy it safely. Enjoy it while protecting that wonderful brain of yours. You cannot put a cast on a brain and hope it heals straight. Preventative measures are all we can do.
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…
There’s nothing easy about finding your way through a world loaded with obstacles that others can’t or don’t see. When you are different, you can feel as if you’re operating with a different map, a different set of navigational challenges, than those around you. Sometimes, you feel like you have no map at all. Your differentness will often precede you into a room; people see it before they see you. Which leaves you with the task of overcoming. And overcoming is, almost by definition, draining. — Michelle Obama (Obama, 2022, p. 7).
I have said this time and again at Hearing Elmo. People with disability, challenges, and invisible or visible issues are the strongest people I know. It’s as if working hard to carry on and adapt, cope, and do your hardest to thrive, develops physical, mental, and spiritual muscles. The comparison to muscles stops there, however. Yes, our “differentness” can make us stronger, but it rarely produces true strength, muscles that are bulked up and fit. We may be strong but we are also very tired. We may often FEEL weak.
“Individuals with disabilities are at a greater risk of experiencing fatigue than the general population, and this risk increases with age” (University of Washington, 2013, para. 1). I am in my 50s now and can certainly attest to finding myself fatigued earlier in the day because of my disabilities. Even though I have a service dog to help me with gait, balance, and directed retrieves, even though I have a cane and hear with a cochlear implant, hearing and walking are physically and mentally draining. It sucks we don’t burn calories navigating life with a disability! I even make it a top priority to take naps when I can, eat healthy foods, exercise 3-4 times a week, go to bed at a decent hour and even practice mindfulness to the point it is seamlessly woven into the fabric of my life now.
Many are confused about what mindfulness really is. I think they picture someone in a yoga pose with a very zen expression. Mindfulness is actually a very active and participatory state of being. In other words, taking a long nap is not mindfulness. Unless your subconscious mind produces better results than mine does, you cannot be asleep and practice mindfulness. “To live mindfully is to live in the moment and reawaken oneself to the present, rather than dwelling on the past or anticipating the future. To be mindful is to observe and label thoughts, feelings, sensations in the body in an objective manner. Mindfulness can therefore be a tool to avoid self-criticism and judgment while identifying and managing difficult emotions” (Psychology Today, n.d.).
This “practicing mindfulness” is especially helpful after a “terrible, horrible, no good, very bad day” (Viorst, 1987). When my disabilities or rather, working, living, and loving others with my numerous disabilities KICKS MY BUTT, mindfulness helps me keep it in perspective and center myself in the present rather than focusing on my “terrible, horrible, no good, very bad day”. Something I actually tell myself after these kind of days? TODAY HAD SOME HICCOUGHS BUT TOMORROW WILL BE BETTER. I WILL TAKE CARE THAT I TAKE CARE TO AVOID BEING IN THIS SAME PLACE TOMORROW.
We can, and have, and will continue to overcome. We will also be tired, perhaps even always tired. This journey is worth it, my friend. Even if our journey includes constantly coping, adapting and persevering. It’s worth it. And by being worth it, we are a living, breathing, testimony that people with disabilities believe life is worthwhile; that WE are worthwhile.
L. Denise Portis, Ph.D.
2022 Personal Hearing Loss Journal
Obama, M. (2022). The light we carry. (1st edition). Crown Publishing.
University of Washington (2013). How to do a Lot with a Little: Managing Your Energy [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. http://agerrtc.washington.edu/
Viorst, J. (1987). Alexander and the terrible, horrible, no good, very bad day. Simon & Schuster.
[Pictured: Author and owner of Hearing Elmo. White, 56-year-old female grinning at the camera for this post. Gray hair, brown eyes with flowered blouse]
Many of you know that I am a psychology professor (although I do teach American Sign Language as well) at my local community college. This week is finals week. My students are stressing big time. I have been teaching since 1990 and teaching college-aged students since 2011. This is the most “stress” I have ever felt coming off of students. It may be because for many this was the first semester back to a “near normal” semester. Many who have come right out of high school may have spent the last year or TWO doing most coursework virtually. Our final exams are face-to-face in a designated time slot (to keep any student from having an overlap).
Finn Paz-Gurion is my 3rd service dog, a 4-year-old Golden Retriever. Out of my three service dogs, Finn is the most likely to seek out hurting students. My first had some Golden in her mix and she many times did the same, but not to the degree Finn does. Finn behaves as if it is part of his job to check on students. I have noticed this week that Finn has noticed everyone seems stressed. He hesitantly approached a student with their head down on their arms and poked his head up underneath to say HI. The student sat up and greeted Finn, but in eavesdropping they proceeded to tell Finn how stressed they are. Finn made sure they knew he cared and was listening. He did this several times in each of my classes. One student exclaimed, “Oh Finn! You know I’m stressed!”
I am a mentor for a some adjuncts and one told me this week, “I’m stressinating!” I did what I could to alleviate some of that <big grin>. I also serve as a Disability Mentor for one professor and one doctoral student (both with disabilities) through the American Psychological Association. They are both stressing as well, stated without hesitation in our two zoom conferences this month.
Stress is not ALWAYS bad. At times it serves as the best of motivators. I have certainly found the comeuppance to finish what I have started due to some stress related to due dates and timelines. Stress can also be bad, even dangerous. Hans Selye, founder of the “stress theory”, provided some terrific research and science related to stress.
I find myself in the resistance stage more than I care to be. Resistance, like stress is not necessarily “bad”. In this stage, a person with disability (or an abled person) creates and implements coping mechanisms and the means to achieve goals with perhaps some self-created accessibility tools or options. A small example of this is push-button accessible doors on my campus. Walking up to an entrance, I can feel my stress elevate. Will the automatic door be turned on correctly? If the outer door opens, will the inner door open as well? If it doesn’t I’m trapped between doors! Finn can “potch” (Yiddish for PUNCH… I cannot find a Hebrew word for the action word), but few doors on campus are sensitive enough to respond to a dog punch. Instead I clobber the button with the tip of my cane. If I am lucky, the door opens. Luckier? Both doors open. If I am not lucky? I have to ask for assistance. This “asking” can be difficult for an independent-minded person with disability. So the resistance phase is good… I’ve learned to adapt and even ask for help as needed. Even so, if I have to fight with the doors all week, I can promise you that by week’s end I am exhausted.
As a psychologist, I have recently been reading about the research associated with the Disability Related Stress Scale (DRSS). The World Health Organization has given a temporary “stamp of approval” for reliability though more research is needed to determine validity (Rhode et al., 2012). Do people with disability experience stress the same way and similar levels as those who are abled? Is the stress related to the disability?
I have been a person with disability for long enough, I truly believe I experience very little stress as a DIRECT result of my disabilities. I cope, modify, and “fight on” when I experience the effects of my disabilities. Instead, the stress I find the harder to cope with is that of the reactions or “in-action” of people around me. Do they see me or see my disability? When they make decisions about DEIA (diversity, equity, inclusion, and accessibility) issues, are they considering the impact of those with visible and invisible disability, illness, and diagnoses? Are people with disability invited to participate in committee making these decisions? Are they invited to provide workshops or other disability-related education and advocacy?
As a person with disAbility, how does “stress” impact your life?
L. Denise Portis
2022 Personal Hearing Loss Journal
Rhode, P. C., Froehlich-Grobe, K., Hockemeyer, J. R., Carlson, J. A., and Lee, J. (2012). Assessing stress in disability: Developing and piloting the Disability Related Stress Scale. Science Direct. https://doi.org/10.1016/j.dhjo.2012.03.002
Hearing Elmo 