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
Photo description: Finn, Golden Retriever, 5-yrs-old, off duty and relaxing on a wood porch.
YAWN.
I get it, Finn. I’m nervous too. Stay calm. (I fidget with my cane)
Finn YAWNS again and sidles closer.
I know! Should I be rude and curt? Condescending in hopes of shaming? Teacher/educator mode? I just want to shop without notice like every other person in this store!
Finn YAWNS and does a slight eye roll. With him as my shopping buddy I can’t very well go unnoticed.
Finn is my 3rd service dog. Like anything I take on, when I chose to be partnered with a service dog to help mitigate my disabilities, I learned all I could about dog behavior, training, and service-dog work. A dog yawning is a very specific kind of “dog language”. Turid Rugaas (2013) explains that when a dog yawns, the dog is signaling that it is nervous, anxious, or excited. Finn and I were silently communicating unease at having been stopped and engaged even though all of MY body language said, “stay clear, I’m doing fine on my own”.
“Dogs yawn when they are slightly stressed by something in the environment. It can be something very simple, such as a dog or person passing by a little too closely. Dogs often yawn when they are feeling like they have to “perform” in some way. Dogs yawn often when they feel confused or frustrated by the current situation” (Aloff, 2007, p. 90). Finn was not comfortable because I wasn’t comfortable. Being my partner for five years, he knew that I was not happy this person had stopped me in Costco to talk about my disabilities and service dog. With only one hand on the cart (the other holding Finn’s leash), I automatically wobble more than I would if both hands were on the cart. Because of my wobbles, my cane, hooked for easy access on the cart handle, is banging against the side of the cart. I’m sure my voice is tense. I’m unhappy. Finn YAWNS.
I’m unhappy because someone is trying to be nice.
You read that right.
Out of the kindness of their own heart, a total stranger asked if they could help me in the store. My cart has 7 or 8 items in it already. It’s obvious I didn’t need their help to shop thus far. I assure them I am fine and “thank them for asking”. They ask about Finn, who is now on his 5thYAWN. His vest says, “Please ask to pet me” on the side.
This very KIND person asks, “May I pet him? What’s his name?” I reply (with kindness) my rehearsed response:
“I don’t mind if people pet him if I’m seated. Since I am not, it would be better for you just to ignore him.”
The kind person looked around and even stepped to the side to look down a long aisle with cooking utensils. “I don’t see any chairs”.
Oh because everything about me tells you I want to sit so you can pet my service dog and take even more of my time?
Instead I say, “Well I am shopping right now and we need to keep going. I tend to run out of energy fairly quickly so we need to finish up”.
The kind person looks slightly affronted and says, “OK. I was only trying to help!”
AND… There lies the conundrum.
Kindness is complicated. I truly believe people mean well. Perhaps if I were not differently-abled, I would make the same mistakes. Good hearted people want to help someone, especially if it looks like they are struggling. (By the way, I was doing great before being stopped and actually struggled more after having to engage – hence Finn’s YAWN.)
As a former teacher, I’m all about advocating through education and information. However, there is a time and place for everything. Like most people with disabilities, if I need help I will ask for it. This is something you learn to do if you’ve lived with disabilities for some time. My service dog, cochlear implant, and cane can help me do most things independently. There are times, however, where I need some assistance. I will ask for it. I’ve never been turned down and I’m 57 y’all! That’s a lot of years of having to occasionally ask for assistance! Sometimes automatic doors will not work. Sometimes a dropped item is too big or too heavy for Finn to pick up. I will ask for help. I appreciate all the kind people but enough already. Rebekah Taussig (2020) said it best:
I am a magnet for kindness. Like the center of a black hole, my body attracts every good deed from across the expanse of the universe to the foot of my wheelchair. I move through parking lots and malls, farmers’ markets and airports, bookstores and buffets, and people scramble to my aid. They open doors and reach out their arms to help, they offer prayers, grab my handlebars for a push, watch over me, and hold out wads of cash (p. 167).
People trying to be kind can be authentic. They noticed me and really do want to help. It can also be someone who is curious and wants to learn more. Maybe they know someone with a mobility challenge and want to learn how they can best help? As Rebekah states, folk’s attempts at being kind can “be anything from healing to humiliating, helpful to traumatic. It’s complicated” (Taussig (2020, p. 169).
I’ve come home from Costco trips determined to be an online shopper. I’ve also come home and thought about what a positive shopping trip that was after asking a stranger for help when Finn’s leash snagged on a pallet at a Target we were at and I could not yank it free. I tried to free it myself for a few minutes and then caught the eye of someone nearby and said, “Would you mind freeing Finn’s leash for me?” A dozen or so people bumped heads trying to be first in line to free that leash! (Yeah, that was a slight exaggeration). After freeing us up, I went on about my business as did the kind “helper”.
Kindness is complicated. Please don’t misunderstand. Kindness is wonderful. We NEED MORE KIND PEOPLE. The world NEEDS MORE KIND PEOPLE. Just use “intelligent kindness”. Does the person you want to help look as if they need it, as if they want it?
If you are person with a disability? Don’t struggle with something you cannot do on your own and then beret everyone around for not helping. If you need help, ASK.
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. —anxiousadj.
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.
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:
Connects you to information and resources about “what ails ya”. This yields truth to the “knowledge is power” phrase.
Provides the means to share and connect with others struggling with similar issues.
Provides a platform for advocacy and change.
Alleviates feelings of isolation and loneliness.
Enables individuals to stay connected to local, national, and world news, often with unmatched accessibility to this information.
Allows differently-abled people to shop, pay bills, etc., in an accessible, safe space (home).
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.
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.
Hearing Elmo 