Note: The following was written by Ryan in 2017. Ryan now uses a power wheelchair.
It’s 9am, and I’m still in bed. I’ve been uncomfortably conscious for hours thinking about how I will spend my spoons. Gravity pulls like a sickness. Just being awake costs.
I have to go out in public today. I can’t walk or stand for more than 5 minutes without suffering. I need something to sit on everywhere I go. My journeys are a seating map. The grocery store has few seats, and they are often sticky. Aisles and aisles without seating means I have to bring my own. My rollator makes errands possible.
I’m dreading today’s doctors’ appointments. Doctors’ offices and hospitals have seating, but those seats are in sensory spaces that make me stim. I still have the reflex to pace to manage sensory overwhelm, but my body ain’t having it. I’ll gouge my scalp bloody instead.
I can walk when I must. I can push myself through as much as 20 minutes of standing and walking, but the cost is great. I need the rest of the day to recover from such a reckless waste of spoons.
I sometimes long for a wheelchair. Far from being confining, a wheelchair would be liberating. I could stim with movement. I could save some spoons. I could stay below my diminishing thresholds.
I dread the moment of rising from the chair in front of others, though. Getting up from a wheelchair to navigate an inaccessible threshold, reach for something, or simply stretch does not compute for our ableist societies miseducated by the politics of resentment. You are judged a fraud, a fake, someone trying to get something you don’t deserve.
A wheelchair is in my future. Without one, I can’t go on outings with my family without melting spoons. I can no longer push past the shrinking limits of my endurance. I’m using a rollator now, but it can be slow, uncomfortable going. Even with rollator assistance, walking is a struggle with pain and gravity. A wheelchair would be enabling, but using one involves a direct confrontation with systemic inaccessibility and ableism. Am I up for it? My body becomes more and more convincing about its need for a chair, but I am reluctant to put up with more ableism than I already experience.
Wheelchairs are the symbol of disability. Transitioning to visible disability would avoid some invisible disability tropes, but those would be replaced by other tropes. And the moment I demonstrate that I can still, for now, walk, that symbol becomes an indictment.
Every day, in every context, people with disabilities get challenged to prove how disabled they are. This constant questioning isolates people with disabilities, increases stress and shame, and can lead directly to verbal or even physical abuse. Here are a few examples:
The parking lot, with its handicapped spots, can be particularly fraught for people with invisible disabilities. On my Facebook page, one of my readers remarked that, “All I see are looks of disapproval, barely veiled disgust and constant scrutiny. I’d gladly trade my ‘good’ parking space for being able to walk more than 25 yards at a time.”
Invisible disability also gets people in trouble with the law. When a disabled person doesn’t react the way a law enforcement officer thinks he or she should, violence often follows. But visible disability is no protection. In 2008, as shown in a disturbing video, a Florida deputy didn’t believe a man who had been arrested on a traffic violation was really a quadriplegic, so she dumped him onto the floor to see if he would use his legs out of duress.
These are just a few of the ways we constantly demand that people with disabilities prove themselves. We do it because, to the not-disabled, claiming disability seems to have a kind of power.Kanye West and proving your disabilities (Opinion) | CNN
There’s a lot of work that goes into being disabled that non-disabled people often don’t see and don’t even think about.
And that’s one of the things we really want to highlight with the documentary, is this invisible part to a disability
Whether their disability is visible or invisible from the get go, there’s always invisible stuff that you might not know the person has to deal with.
Moving from making it an invisible characteristic that people have, to more visible will change the discussions about diversity and inclusion, because if you make things more inclusive for disabled people, it usually is more inclusive to everyone else.Invisible – Documentary about 6 disabled women activists (audio described and closed captioned) – YouTube
Isn’t it interesting how they THINK disability looks.
This video is a fascinating display and how ableds view disability, because they literally cannot conceive of the idea that anybody has a disability that they cannot physically see.
Which is part of the reason why they leapt at the opportunity to leave disabled people to dye. Because they only believe that there’s a small number of people with disabilities, because there’s only as mall number of people with visible disabilities around them.
Which has a lot to do with how we isolate disabled people from society. We actually represent 26% of the population, and even more so now because of COVIDImani Barbarin on Instagram: “Isn’t it interesting how they THINK disability looks.”
Disability Is Not a Binary
This is just one of the reasons I work so hard on how we portral/represent disability in our culture. People think they know what disabled looks like, but they have no idea. People think they know what “disabled activities” look like, what disabled people can do. So let me set you straight – disabled people, as a group, can do everything. Some can do some things. Some can do other things. Some can do some things some of the time, other things none of the time, and all things most of the time.
1. Disability is not a binary, it’s not a yes/no, disabled/abled. Disability takes place along a spectrum, or rather multiple spectra, as we move in and out of disability over our lives or even over the course of a day. Read more on this here.
3. As for parking. Reader 1 is angry because it’s a scarcity model. There are only a few parking spots, his mother and father-in-law sometimes can’t use a spot, and that makes him mad. It intensifies his suspicion. Instead, we need more spots, more accessible parking, more golf carts for rides, more universal design. The scarcity model causes problems.Hidden Disabilities; or, You Have No Idea What You Are Seeing – This is David M. Perry
I regret not acknowledging my need for help earlier. I wish I had not equated a walker with defeat or shame. I now talk about walkers, wheelchairs and other disability aids with anyone who will listen in hopes of destigmatizing them and the people who use them. Freedom, not confinement. Tools, not traps. I will keep repeating this until everyone who needs to break free feels comfortable using them.I’m Not ‘Bound’ To A Wheelchair; I Was Freed By One | HuffPost
Stop Playing Disability Detective
Anyone who uses accessible parking but who doesn’t look sufficiently disabled or who only uses their wheelchair sometimes has encountered the “Good Samaritan” stranger who demands that they prove their disability. It happens a lot in parking lots, because accessible parking spaces are hotly contested proving-grounds for disability.When Disability Is Misdiagnosed as Bad Behavior – Pacific Standard
Hello, hello! So if you clicked on this video I’m pretty sure you’re here to find out what are those clues you should be looking for when you’re trying to figure out if someone is disabled or not.
Well, I’m here to tell you…
In case you missed it, you cannot tell if a person is disabled just by looking at them.
Disabled people face a lot of harassment because of this misconception that there is some kind of epidemic of people faking disabilities.
A common interaction that will occur is when a person will park at a handicap spot and leave that spot without a mobility device, which then will make a total complete stranger feel entitled to harass that person whether verbally, confrontationally, or leaving them harassing messages on their vehicle.
Time after time after time.
Statistically speaking, if you see someone that parks in a handicap spot and doesn’t “look disabled” to you, more likely than not, they have an invisible illness or invisible disability. For all you know, that person has a feeding tube underneath their t-shirt or prosthetic limbs under their clothes, they could suffer from a heart condition, fragile skin, muscles, bones, etc.HOW TO SPOT A FAKE DISABILITY [CC] – YouTube
Almost every time, like clockwork, that I get up from my wheelchair to transfer to a different chair, people are STUNNED.
People’s eyes grow large! In case you missed it, some wheelchair users can walk.
Often not for long periods of time, often there are variables, often it might hurt too much to walk or they might not have enough strength to walk, but some wheelchair users can indeed walk.
And just because a wheelchair user stands up from their wheelchair or walks does not mean that they are faking needing their wheelchair.
People who use mobility devices run a high risk of harassment whenever they stop using their devices for whatever reason, whether they put it down or get up from their device.
A lot of us are scared because there’s a lot of ignorance in the world and a lot of people are ready to attack and ready to call us “fakers” just because they don’t understand that disability comes in different forms.HOW TO SPOT A FAKE DISABILITY [CC] – YouTube
I often bring up the ableist action of harassing/accusing ambulatory wheelchair users (as well as scooter, walker, crutches, and cane users) of “faking” because it’s something that happens ALL the time under the guise of “allyship” that people seem to WANT to remain oblivious to.
A person standing up from a wheelchair or standing without their mobility aid SHOULD NOT be cause for alarm, should not inspire accusations of faking, should not inspire you to say, “it’s a miracle!” in a mocking tone, or to ask me if I should “really be parked here”, or recommendations of weight loss so I won’t “need that chair anymore”, or whispering about how my karma is coming or how I’m going to hell for “playing with a wheelchair”; all comments I’ve received from strangers for just standing in public, getting my chair out of the trunk of my car on my own, or doing something as minimal as riding my chair while being young and smiling.
It’s prejudice; it lacks understanding to how diverse disability is, it uses a singular representation of wheelchair users to judge all wheelchair users. When people are called out on that ableism, those who do it will become defensive and claim to be acting in defense of disabled people because they truly deeply believe in the myth of a “faking disability epidemic”, but hear this: non-apparent disabilities/invisible disablities, etc. are REAL disabilities and you are harassing the very people you are claiming to be advocating for.Annie Elainey – Standing Up From My Wheelchair in Public – Standing Up From My Wheelchair in Public
A lot of neuro divergent people operate at a fairly high level of stress and have to hide their anxiety and it’s exhausting.
I don’t know that many people will have had to learn systematically the kind of coping mechanisms I need to get through an ordinary day.
And that’s a really sharp learning curve.Invisible – Documentary about 6 disabled women activists (audio described and closed captioned) – YouTube
“Aspie burnout” is a colloquial term, that the clinical world doesn’t seem to acknowledge as a genuine part of the autistic spectrum, resulting from the attempts to “be normal”, fit in and keep up. Here, I think it is very useful to draw peoples’ attention to Christine Miserandino’s ‘spoon theory’: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/ because when I read it, I saw such immense parallels with living with Asperger’s/autism. It can creep up on you, it can hit any time, but for sure, most Aspies will have experienced Aspie burnout by the time they hit 35.
Basically, the higher functioning you are, the more others expect of you and also, the more you push yourself. You have an invisible disability, you look normal and have no apparent physical difference. So why can’t you behave and carry on like everyone else? Sure, everyone gets tired, sure they also can get burnout from pushing themselves too hard. But the difference is this: we get it from just existing in a neurotypical world, a world that doesn’t accept our differences or make allowances for them. Mental health issues such as anxiety and depression are greater in high-functioning autistics, because of trying to fit in and finding it so difficult. Because we are acutely aware of our differences and our failings, but we are just as affected by them as lower-functioning autistics. So we kind of have the rawest deal.
When you hit burnout, you can take a long time to recover. Even one stressful day, for someone on the spectrum can mean days or even longer, of hiding away to recover afterwards. So imagine what impact it has if you try day after day to continue living at a level, which to others is ordinary but to you is a massive challenge. And once you burnout, your coping capacity is diminished. That means, even when you recover, if it happens again, it can happen quicker and take less to provoke it.Aspie Burnout | Planet Autism Blog
I know I worry that people don’t believe me. I’ve been around NTs who don’t know my diagnosis as they say, “Oh everyone has something these days! It takes nothing to get a diagnosis! It’s just fashionable!”
Acceptance is better than empathy, especially empathy that is getting it wrong. The thing you’re trying not to do? You’re doing it. We don’t hate you for it. We love that you’re trying. But you’ve just stopped us sharing. You’ve just shut it down. And I don’t think you meant to, I think you want to hear what I have to say. I think you care.“I do that too” The great miscommunication – Autism and expectations
Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.The Spoon Theory written by Christine Miserandino – But You Dont Look Sick? support for those with invisible illness or chronic illness