Positive Vibes Only: How toxic positivity harms disabled people
“Positive vibes only.” We’re indundated by this toxic and invalidating message. People with disabilities, in particular, are often silenced and shamed in the name of positivity, simply when sharing their reality or experience with others. In this blog, I cover examples of toxic positivity, how it is weaponized against people with disabilities, and ways non-disabled…
Non-visible disabilities: More than meets the eye
Non-visible disabilities make up the vast majority of disabilities worldwide, with chronic illnesses accounting for 96% of them, according to the World Health Organization. And still, most people only tend to count obvious, physical disabilities or people using mobility devices as the definition of “disability.”
MORE THAN MEETS THE EYE
Most people with non-visible disabilities look “fine” to others, and as a result, we’re often dismissed or criticized by abled people who don’t understand the full scope and nature of disability. Often, we are disbelieved by non-disabled people who accuse us of faking or imagining our conditions. Non-disabled people, of course, have no direct lived experience with disability, yet many seem to overflow with judgment, unsolicited comments and misinformation. This is, of course, a product of ableism in our society.
A LANGUAGE CHOICE
I use the term “non-visible” disabilities, like many major organizations, to recognize legitimate but not easily visible disabilities. The phrase “invisible disabilities” can wrongly imply that the disability isn’t real, and is invisible and therefore imaginary.
The same goes for “hidden disabilities” that imply a person is ashamed or not being honest about their condition by concealing it. We want to avoid this stigma-laden language, when so many people with non-visible disabilitities are already being invalidated every day by the ableist society we live in.
In this blog, we’ll examine a list of common examples of non-visible disabilities that abled people rarely consider — things that truly impact the lives of those of us who live with debilitating medical conditions.
It’s important to keep in mind that any disability can be long term or short term, progressive or stable, constant or unpredictable, and treatable or untreatable. For many of us, there is no cure and treatment is often trial-and-error guess work, which makes the experience more daunting and complicated.
Here are just a few common non-visible disabilities people live and struggle with — and many people have multiple disabilities at once, thanks to new and related conditions that develop because of an earlier disability:
- Autism Spectrum Disorder (ASD)
- Asperger’s Syndrome
- Sensory Processing Disorder (SPD)
- Learning Disabilities
- Speech and Language Disability (e.g. laryngectomy, aphasia)
- Hearing Loss (*not all forms are obvious)
- Vision Loss (*also not always obvious)
- Cognitive Impairment
- traumatic brain injury (TBI)
- learning disability (e.g. dyslexia, dyscalculia)
- Respiratory Illness (e.g. asthma, chronic obstructive pulmonary disease)
- Multiple Sclerosis
- Chronic Pain (e.g. back issues, bone disease, physical injuries)
- Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)
- Mental Health Condition
- obsessive compulsive disorder (OCD)
- post-traumatic stress disorder (PTSD / C-PTSD)
- eating disorder
- Sleep disorder
- Cystic Fibrosis
- Kidney failure
- Spinal Disorders
- Allergies (chemical, environmental, food, etc)
- Digestive System Disorders
- Inflammatory Bowel Disease (IBD)
- Ulcerative Colitis
- Irritable Bowel Syndrome (IBS)
- Celiac Disease
- Gastroesophageal reflux disease (GERD)
- Lyme Disease
- Repetitive Stress Injuries
- Rhuematoid Arthritis
- Trigeminal Neuralgia
- Balance and Dizziness Disorders
- Meniere’s Disease
- chronic dizziness
- vestibular balance disorder
The list goes on and on…
DOs AND DON’Ts
FOR INTERACTING WITH PEOPLE WITH NON-VISIBLE DISABILITIES
While there’s no formal etiquette, rely on common sense, good manners and the wishes of the disabled people you are speaking with. Here are some starter tips for how to interact with non-visibly disabled people:
- don’t judge a person based on their appearance – non-visible disability is all around you. Believe people when they share they are disabled and don’t pry for more information.
- do understand that non-visible disabilities are valid and serious, impacting people’s daily lives
- avoid judgmental and invalidating comments like “but you don’t look sick!” or “you look so good, nobody would ever know there was something wrong with you!” You have absolutely no idea what a person is experiencing and what they have lost and continue to lose due to disability
- do offer help IF a disabled person asks you for it and please follow their explicit instructions/request – never assume they need help or what kind of help someone else needs
- do not, EVER, touch a disabled person, their mobility device(s) or their service animal unless they clearly ask or permit you to — this cannot be emphasized enough!
- do learn about your friend, loved one or colleague’s disability so that you can understand. Don’t put the emotional burden on them to educate you and field your questions.
- don’t make comparisons about others you may know with the same condition. This is insensitive and inappropriate. Disability is very individual. No two disabiltiies are alike. Every journey is different. Don’t insult someone by dismissing their condition because you think someone you know is doing fine with theirs.
- don’t offer unsolicited advice or consolation (e.g. “at least” or “it could be worse” statements). This can be hurtful, invalidating and triggering. Remove remove toxic positivity from your speech. Resist the urge to sugarcoat the medical struggles of disabled people – it’s harmful, not helpful
- do realize that some people have fluctuating, chronic conditions that change day to day (and sometimes hour to hour). Just because we can do something today doesn’t mean we can do the same thing tomorrow. If you find that frustrating or confusing, imagine how we feel living it every day
- don’t ask strangers or acquaintances intrusive questions about their disability – this is private medical information that you are not entitled to and we are not here to be your live teachable moment, put on the spot and interrupted constantly because of inappropriate curiosity. If a disabled person chooses to disclose, for whatever reason, it is their choice. Usually we share with those closest to us, and even then, nobody is entitled to our personal medical details
- don’t watch and question people who are using accessible parking permits – many disabilities are not solely wheelchair related. You are not here to police disabled people in society. This is harassment. You wouldn’t chase a pregnant person demanding for proof of their baby bump, would you? (I should hope not!) Mind your business, friends.
- don’t ask questions about a disabled colleague’s workplace or study accommodations – that’s between them and their manager/instructor
- do treat all people with disabilities with respect and dignity. Please don’t use baby talk, condescending tones, pats of encouragement, belittling high fives or thumbs up, or extra loud volume – cringe!!
- do know that people who use mobility aids can choose different tools for different needs and times – not all people in wheelchairs are paralyzed; many alternate between canes, walkers and wheelchairs or other mobility aids. Don’t question or stare, for goodness sake!
- remind yourself that just because you can’t see any “evidence” of disability, it does indeed exist and a disabled person doesn’t owe you any explanation – it’s already hard enough! Many of us are very private and have every right to be.
- don’t use words like “handicapable” or “differently abled” or “super power” – “disability” is not a dirty word – it is a serious and real medical condition, and not something to be renamed because of abled people’s discomfort with disability.
BECOMING AN ALLY
The first steps to becoming non-ableist ally for people with disabilities include educating yourself by reading up, following disabled thought leaders and advocates, and diversifying the content and information you consume online. Changing the way we think and speak about disability is the goal. All disabilities differ, all are complex and all are entirely valid.
Please share your thoughts on or experiences with non-visible disability in the comments. It’s great to talk, exchange and learn from one another!
4 Ways to be an Ally to People with Invisible Disabilities
List of Invisible Disabilities by Disabled World
Psychology Today: Invisible Disabilities
Disability Unit UK: Living with Non-Visible Disability
Disclaimer: There may be occasional typos in my posts due to physical mobility issues. Perfection and humanity do not go together. I am a disabled person drawing from my own lived experience, my professional experience in the disability community at the provincial and national level, and lifelong learning through research, study and courses. What’s more important to me than perfection on this blog is being able to share and exchange stories with other disbaled people and to encourage non-disabled people to become allies.
- Autism Spectrum Disorder (ASD)
Staying Cool in a Summer Flare Up
Experts don’t quite know why pain seems to flare up during humid, hotter months, yet for people with chronic pain conditions like arthritis, lupus, multiple sclerosis, fibromyalgia, and migraines, there’s no denying the impact high temperatures can have.
In this blog, I’ll share some tips for managing heat-related chronic pain flare ups.
NOW IT ALL MAKES SENSE
I never realized that my dislike of summer heat could be related to a silent chronic illness I wasn’t yet aware of. The pain, inflammation and fatigue started in my late teens. For years, I had chalked this heat intolerance up to living on a cold island and thinking I must be be built for the cold.
Summer soon became a time I would dread, hiding in the shade, sapped of energy with headaches and a gnawing, grinding pain in my legs and hands that kept me awake at night. My joints groaned, one shoe would wear down, I had constant insomnia and sleep problems, which played havoc with my mood and focus as well.
I discovered that swimming in cold water felt great, so I gravitated to beaches, ponds and water holes with falls. That was some reprieve, as well as peak sunny hours spent in my Nan’s cool front room with her.
For years, I was told these were simply “growing pains” and scolded for “wasting” my summers seeking shelter inside or in the shade. An active life of sports and adventuring also meant injuries and strains, so it was easy for me to brush off pain and discomfort.
“You’re way too young to be in pain. // There’s nothing wrong with you. // Stop being lazy. // You’re just looking for attention. // Toughen up!” I’d been admonished by skeptics, both in healthcare and all around me in my community. I learned to keep it to myself, accepting that maybe this really was just the way it was and that I needed to suck it up and not “complain.”
It would take far too long for anyone to make the connection that something was, indeed, wrong. Needless suffering comes from dismissing, invalidating and mocking people with non-visible disabilities. And yet it is the same story told by so many of us who live with chronic illness.
HERE COMES THE FLARE
On a recent holiday this Spring, an unseasonably early heat wave triggered the earliest and worst summer flare up I’ve had in years. And summertime heatwave season only exacerbates my condition. Hello climate change.
At times like these, I have to prepare myself mentally and be strategic about planning my day around fluctuating mobility, pain and energy levels. I wait until the evenings cool down or early mornings to live my life, when the pain allows it. I usually have to pare down my life only to the most important activities: health care, work and loved ones. The rest gets swallowed whole.
Chronic illness makes every day unpredictable, and summer can really crank up the challenge. I have long stopped planning anything important in the warmer months as a result.
STAYING COOL DURING A SUMMER FLARE UP
Here are 15 tips that I rotate through when trying to cope with a summertime heat-induced flare up. Please leave me your ideas and tips in the comments, chronic pain warriors!
- Avoid the sun
Rest in the shade as often as possible so you don’t drain your battery and make the pain and fatigue worse. If you’re light sensitive like I am, the shade will be your friend. Your skin will also thank you.
- Seek out air conditioning
At my flat, I sit right in front of it for maximum relief. I have multiple fans but they only push around the humid air, so I’m thankful to have an amazing air con (also popular with my pets)
- Stay hydrated
Not just a popular catch phrase, but excellent advice. Drink plenty of water, and reduce caffeine and alcohol (if you drink these), These only worsen dehydration and inflammation. Hydration really helps me cope.
- Plan outdoor exposure and errand running
Be strategic by reducing the time spent outdoors during peak hot times of the day. I plan according to the forecast’s humidex and temperatures. You can also learn planning and prevention measures for heat-related emergencies at the Canadian Red Cross.
- Wear breathable clothing and footwear
I find thin, loose, oversized clothing made of cotton and linen best. Polyester and other synthetic fibres only trap the heat against your body. Nope! Open and breathable shoes and sandals help, but I am barefoot most of the time during a summer flare
- Keep an eye on mental health and reach out for support
When struggling with disability and illness, it can be easier to keep things to yourself and suffer in silence. It’s so important to talk with someone you trust and to seek out counselling or other community supports so that you don’t feel even more alone that your disability already makes you feel. There is no shame in feeling overwhelmed, scared, worried or alienated. You matter. You’re not alone. Please take note of this mental health support, if you’re in Canada.
- Try acupuncture and other physical therapies
It provides me with a lot of relief, especially when combined with cool packs. I can usually buy a couple of almost-normal days after dry a visit to the amazing professionals at Knotical Chiropractic and Nova Physiotherapy.
- Apply cooling packs
These are constantly in rotation for me, applied with a thin cloth cover to whatever body part hurts or swells during heat-induced flares. A cool, damp cloth or cloth-wrapped frozen item from your freezer work well too! Pro tip: you can also get pet cooling mats to ensure your dog or cat doesn’t overheat. Heat can be deadly, even inside.
- Try self-misting / humidifying
I have a cool air humidifier that helps, and a good old fashioned spray bottle I use for misting my plants — and myself — during heat spells. I find it can revive you a little. I find a lot of relief in my cool mist humidifier, so much so that I run it year-round now.
- Exercise at cooler times of day
If you are not too painful, try to keep active in some way during a heat-related flare. I know this is not always possible when pain is at a level 10, fatigue sets in and balance is off. If you do find a safe, sensible way to move that doesn’t overexert or worsen your condition, try to do this during the coldest time of day.
- Conside cool water activities
You might try low-impact aqua sports like swimming or water aerobics. Even just resting and bobbing around can work wonders on the joints. Those with chlorine or chemical sensitivities could choose fresh or salt water. As much as I love thermal springs and hot tubs in colder seasons, these can sometimes flare you up worse if the heat is too intense for an already-inflamed body. Cool water plunges seem to help me. Nordic spas are one of my love languages!
- Take cool showers
A cool shower or bath can help if you don’t have access to / energy for / interest in water sports. Cold water over wrists and a cold cloth around the back of the neck also work well as a quick fix if painfully overheated.
- Apply aloe to cool the skin
Aloe vera isn’t just for after-sunburn care. It can also provide a moisturizing barrier that protects you against high heats.
- Take it easy to conserve energy and wellbeing
It’s difficult not to overdo it when having a summertime flare up of symptoms. Chores, errands and other activities may need to be reduced to avoid overexertion. Especially during painful or tiring warm weeks or months, conserving energy and not aggravating your condition is advisable. This can be stressful when you have much to do, but by overdoing it, we risk a longer flare and slower recovery period. Missing summer social events or not being able to host visitors during a flare up are awful, and something we have become sadly familiar with as people with disabilities.
- Eat more carefully (whatever that means for you)
I try to avoid foods that are linked to increased inflammation during summertime and during flare ups. I also find my appetite leaves me during humid and painful times alike. It’s a challenge, but I have found I feel better when I watch out for certain foods or make sure I’m eating and drinking enough to keep myself able to weather the summer flare up storm. Similarly, people with allergies, IBD, IBS, Crones and Colitis often find hot, humid periods to be painful and flaring for the bowels, gut, skin and overall body — a recipe for double misery when paired with a flare.
CARE TO SHARE?
Hopefully these summertime chronic pain coping tips will be helpful. I’m not a health professional, just a person who lives with disabilities trying to do what I can to cope and sharing with others in the community, who I know I could learn a lot from!
Heat-related pain flare ups are no joke. They greatly reduce our lives, enjoyment, wellbeing and opportunities. While we can’t control the weather or when a flare may arise, we keep trying different things to soothe the pain, discomfort, fatigue or whatever other symptoms visit us with extra intensity.
I’d love to learn what works for you! Pop me a note in the comments, if you’d like to exchange useful tips, warriors. Take good care!
- Avoid the sun
In Canada, more than 6.2 million people identify as living with one or more forms of disability that limits their daily lives according to a 2017 Canadian Survey on Disability by Statistics Canada.
Here in Nova Scotia, almost 230,000 people identify as disabled. In fact, this tiny province has the highest rate of disabled citizens (at 30%) across Canada. A figure and a fact that is 8% higher than the national average, this reality includes a higher number of young people with disabilities (Government of Nova Scotia).
And globally, 1 billion people experience life with disability. That’s 15% of our planet’s population and, according to the World Health Organization, this number is rapidly increasing.
MORE THAN MEETS THE EYE
Most people automatically think “wheelchair” or “white cane” when they hear the word “disability,” and while these are certainly easy to spot disabilities, the fact is that most people live with disabilities that are not easily seen on the surface.
I am one of the vast majority of disabled people who live with non-visible conditions and illnesses. We are your loved ones, neighbours, colleagues, leaders and learners. Hiding in plain sight, with the priviledge of being “able-passing,” I learned to conceal my disability when I started experiencing ableism, invalidation and discrimination. Until I was affected by physical disability, I was able to mask and manage being different in other ways.
As time has passed, I have become more visibly disabled — often, met with confused or skeptical looks, and ableist comments and judgments (“You seem normal” // “You’re too young to be disabled” // “Other people have it worse” // “At least you’re not in a wheelchair – that’s real disability” // “Don’t tell anyone or you’ll kill your career” // “You’re not disabled enough” // “You look to good to have something wrong with you” // “Are you sure? You look fine to me” // “Mind over matter – think positive!”).
Worse was the advice from well-intentioned people I cared about and respected, who told me I should hide it or deny it, and never speak of it out loud as though it was a shame or problem that would put a target on my back. Surrounded by ableism, seeing the marked difference in how I was treated if I disclosed, and seeing my opportunities and lifestyle placed at risk, I learned to, yet again, hide my struggles.
Those were incredibly lonely times, isolated and afraid for the future. I tried to carry on, and learned to suffer in silence and isolation. And yet, the world still changed for me, even if I masked as abled. For many women, this is an all-too-common experience, from autism spectrum disorder to other chronic illness.
It has taken me a decade to feel ready enough — and fed up enough — to become more vocal about my experience as a disabled woman who appears “visibly fine.” Between my own lived experience, that of a grandparent who struggle with disabling chronic pain (who was also dismissed), I also gained professional experience in the disability community through work and volunteer roles. All roads led here, wanting to advocate for my community and help abled people become better allies for disabled people.
I’m passionate about continuing authentic, intersectional, societal conversations about disability rights and effecting real change. As a public relations communicator, writer, facilitator and speaker, I’ll be sharing ideas, resources, and best practices for inclusive language and dismantling ableism.
With storytelling via this blog, a forthcoming podcast and other social content, I’ll share life through my lens – the wins, the challenges and the in-between of life with disability. Of course, I’ll be slowly developing this project while balancing my own disbaility management, personal life and professional life, so thanks in advance for your patience! In the meantime, you can also follow me at @VisiblyFine on both Instagram and TikTok.
Remember, no two disabilities are alike, and all disabilities are valid. Let’s be kind to one another as we learn and unlearn what’s needed to make a more inclusive, healthy and equitable world for everyone. See you again soon!
Land Acknowledgement: I respectfully acknowledge that the land on which I live and work is the traditional, unceded territory of the Mi’kmaq People. I also recognize that the land on which I was born and raised is the traditional, unceded territory of the Mi’kmaq, Innu, Inuit and the Southern Inuit of NunatuKavut (formerly the Labrador Inuit-Metis). Learn about the Indigenous sovereign lands you are located on with Native Land Digital.
Jenn is a disabled creator, storyteller, communicator, facilitator and speaker from Atlantic Canada. She’s passionate about intersectional disability rights, universal design, accessibility and equity. An advocate with intersectional, lived and professional experience in the arts, culture, education and humanitarian sectors, Jenn values authentic leadership and collaboration for meaningful change. #NothingAboutUsWithoutUs