Horror Stories From The Ableist Society
Image Description: A black background with white left aligned reads “Horror Stories From The Ableist Society” above a white Diversability logo. A hand drawn illustration by Marie Dagenais-Lewis fills the right half; it features a jack-o-lantern with candle wax melting into the shape of a skull over its sinister smile as a ghost extends from the burnt candle wick like smoke.
Created and compiled by Marie Dagenais-Lewis, Operations Manager at Diversability
There’s a chill in the air that shocks the crunchy autumn leaves towards the ground, letting us know Halloween has arrived in the Appalachian Mountains. The Halloween Season kicks off one of the best times of the year, but as we are immersed in festive fun we can’t help but be haunted by the fact that the horror which comes with living disabled in an Ableist Society isn’t just a seasonal “trick”. It’s ALWAYS “Fright Night” when a culture built upon a false sense of superiority dictates your entire being as a disabled person.
The ableism deeply engrained into the fabric of our civilization continually fuels horrific actions and stigmas that often go unchallenged by the masses. Even though ableist microaggressions are deemed “socially acceptable”, many of them can actually leave disabled people with trauma for the rest of their lives. It’s time we start to address the REAL, spine-chilling situations that are forced upon the most vulnerable souls in our world.
This Halloween, may we present to you “Horror Stories From The Ableist Society”, a compilation of lived experiences written by members of The Diversability Community. Each story is only edited for clarity to keep them as authentic and true to the author as possible.
TW: Ableist Microaggressions
Chapter 1
By Jenny Jones, she/her, Rare Disease Advocate
Image Description: On the left, Jenny is smiling, standing against a white brick wall wearing a red short sleeved blouse with blue jeans and silver jewelry consisting of necklace, bangle bracelet and ring on her left hand. To the right is a black box with white text “Chapter 1 by Jenny Jones, she/her, Rare Disease Advocate
I have 2 GI rare diseases - Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS).
As a result, I was required to have my colon and part of my small intestine removed this resulted in an ileostomy for 6 years until I was able to have it reversed into a Straight Pull Thru. My physical appearance has varied over the years depending on how healthy I have been able to maintain myself in spite of these diseases. But in general, I appear to be a healthy looking person.
My rare diseases affect my body and health in multiple ways, one significant way is that I require using the restroom 20+ a day due to the SBS causing severe diarrhea. The frequency and urgency of my restroom use has varied over the years depending on my health as well as during a SBS flare. Standing, walking, and exercise all agitate my SBS, increasing my frequency and urgency. Remaining seated for as long as possible significantly decreases my frequency and urgency, especially when I'm having a SBS flare. During a flare, my restroom frequency is as severe as every 30 seconds needing to run to the restroom again for several hours until the flare finally ceases.
To help me continue to participate in activities outside of my home during years of my worst SBS symptoms, my GI specialist whole-heartedly approved for me to obtain a handicap placard and a wheelchair. When this came to the attention of others - who were healthy and even those who also had similar health issues as myself - I would frequently be questioned with clear verbal and behavioral microaggressions as to why I was using a handicap placard or a wheelchair when I look perfectly healthy. Without these, I was absolutely unable to even participate in activities outside of my home - such as grocery shopping, touring a museum, etc.
Even in my best health with SBS, when I need to use the restroom - I don't have a lot of time to find a restroom. For the most part, I'm presently able to manage this well but every time I stop at a business I'm not familiar with I always have the worry that I will be denied restroom access even though I have GI medical conditions. I've encountered this from not only establishments but also my own extended family members during long road trips as a child. During this particular instance, I was a child with an ileostomy at the time and I told the adults I needed to use the restroom but I was refused a restroom break even though we passed several places that we could have stopped at for me. This went on until my ostomy appliance leaked from being too full for such a long period.
Follow Jenny on Facebook, Twitter, Instagram, Tiktok, Pinterest, Snapchat and Twitch
TW: Bullying
Chapter 2
By Puneet Singhal, he/him, Disability Inclusion and Accessibility Advocate
Image Description: On the left is a picture of Puneet Singhal, a brown young man with beard and moustache wearing blue and grey jersey standing and looking at the camera. On the right is a black box with white text that reads “Chapter 2 by Puneet Singhal, he/him, Disability Inclusion and Accessibility Advocate”.
I was 16 years old in 2012 and was studying the tenth standard.
Academically good, I was the only eligible student in my class to contest the elections for the head boy of the school. As per the tradition, I was supposed to campaign to support my candidature and encourage fellow students, teachers, and non-teaching staff to vote for me. I was excited and prepared some posters, pamphlets, and slogans for the campaign. It was my first time being visible in the public sphere.
All the candidates were supposed to give a speech about their vision, ideas, and promises. I was confident about my views to play my part in representing students and working for our overall well-being.
I rehearsed my speech many times in front of the mirror. The day arrived. I knew I would stammer, and I was sure my classmates and teachers would be supportive and kind. When I started, I fumbled; words were not coming out smooth, and even a simple good morning became "go-go-goood mmmoorninggg...". Everyone was laughing with all their might. I noticed even my teachers were giggling. I panicked, I was sweating, and I could hear my heartbeats.
At that time, I was about to run, escape and never face these people ever again in my life. But I didn't give up and finished what I wrote. At that moment of horror, shame and resentment, I promised myself that I would never miss an opportunity to make the world hear the sound of my stuttering voice. My school failed me. It was not a one-off incident. I can go on and on sharing these horror stories and most importantly, I am not alone in facing such bullying just because we speak in an unfamiliar way. Instead of seeing our stammering as something which facilitates enrichment of diversity in expression, we are looked down upon.
TW: Abuse, Medical Gaslighting, Self Harm
Chapter 3
By Deonna Fetzko, she/her, Disabled Performer and Advocate
Image Description: On the left, a woman with curly orange hair and blue eyes appears in side profile resting back against a graffiti wall, wearing a black beanie and a jacket as she looks off in the distance. On the right is a black box with white text that reads “Chapter 3 by Deonna Fetzko, she/her, Disabled Performer and Advocate”.
Sometimes ignoring your child's disability will make them more disabled.
I was always neurodivergent, an undiagnosed ADHD gremlin clinging to my back my entire life. I was intelligent and therefore obviously wasn't in need of diagnosis. My younger sister SUFFERED from her disability, she couldn't function normally. Her over whelming Oppositional Defiance Order and ADHD taking all the bandwidth for mental health care in my home.
I didn't tell anyone my head felt like a white board being scribbled on in 30 colors about 10 topics at once. That every emotion felt it would destroy me from the inside out and yet I didn't feel there was space for them outside of me so I kept them there.
I started self harm in Junior high, smashing the back of my skull off of lockers to silent the ADHD noise I didn't know was there.
"Just shut up, Get over it, let it go.
You got this,
You've got this,
You've got this."
Anything they can do I can do, I am more than capable. People like my sister's need accommodation.
My mobility issues also began in junior high—though I wouldn't get a cane until nearly 15 years later—starting from literally carrying all the weight of my junior high career on my back from the first 6 months of school. My brand-new boomtown school already filled to the brim when I was enrolled a week late, two portable units installed before opening to accommodate grades 7 and 8 and my class still ended up in the Library that year. The school lockers were full and unavailable, so my home room teacher offered a meager drawer I could access twice a day and so I carried my things in grade 7.
Eventually I coyly requested a rolling bag because of the pain I was in. Mom picking up my one shouldered satchel one day realizing it was much heavier then a 110 pound 11 year old should be carrying.
This injury haunted me through high school, constantly I would be limping and nobody thought that maybe something further was wrong. These days I'm aware my fibromyalgia likely took hold somewhere in these years, a genuine injury warping into an unending nervous system response.
Due to prolonged stress, an extreme aversion to rest and consequently sleep, my ability to dissociate and mask my pain has become a reoccurring feedback loop of pain. Crying myself to sleep over stresses I was told were normal, teenage stuff. It gets better.
You just have to try harder. Maybe if you lost weight you would feel better.
I didn't advocate for myself and my parents were busy advocating for my other two siblings and because I was social, intelligent, great grades, I worked, I did all the "right" things. Nobody saw it.
I avoided it at all costs. All problems were higher then mine, I was go with the flow, I was down to earth. Need a hand? Deonna's got you covered.
Now Deonna has a myriad of symptoms that force her to take a hand in her own care. This snippet of an eighth of what contributed to the chronic illness she will now suffer for life, should be a warning for you and yours. Not all disabilities are visible and often they are more like a phantom in the shadows waiting to emerge victorious over the perceivably able people you love.
All struggles are valid.
Follow Deonna on Instagram
TW: A traumatic experience as a Blind screen reader user lost with no phone
Chapter 4
By Preston Peters, Pridefully Disabled Creator
Image Description: On the left is a 26 year old male with short dark hair, dark colored left eye with blue sclera and blue iris on right eye; closed mouth smile, wearing a maroon and black shirt standing in a kitchen. On the right is a black box with white text that reads “Chapter 4 by Preston Peters, Pridefully Disabled Creator”.
So back in the spring or summer time of 2019 I was living on my own in an apartment that had two upper units and two lower units.
The upper unit is where I was, you had to go up 10 steps to get to the main porch and my door was accessible from the outside to the left. On a particularly optimistic and confident day I decided to take out my trash, even though it was not very full after I pulled it out. I was deciding to just not take it out since it wasn’t actually full, but instead I still decided to go ahead and do it; this was something I had done many times so didn’t think there would be any problems. I took my phone, but my phone was at less than 20%. Again, I didn’t think I’d have any issues, so I confidently went on my way with my blind cane and started the route.
To get to the dumpster that my complex uses, which is one of a few complexes, I had to go down a main sidewalk down the side of the street, turn down a side sidewalk that goes down a few steps and then to a landing and then down one big cement step down to where our mailboxes are. This was the route I also took for the mailboxes. Then I had to go to the left of the mailboxes which were up against the side of a building and actually walk along a very thin bit of sidewalk-like-ground that was technically the back of the building that the mailboxes were against. I would count the X number of gutter pipes I could feel with my cane and then when I got to the appropriate number, I would turn left out towards the opposite direction of the building I was behind and walk out until I found a barrier wall that surrounded almost all sides of the dumpster except one.
This particular day, I apparently veered left or right—which is very common for a blind person to do, not being able to see and having their equilibrium off. So after a while of trying to find it myself I ended up calling my aunt on FaceTime to see if she could give me some visual assistance. Unfortunately after a few calls she was still unsuccessful with helping me find it, but by this point I had gotten so turned around that I didn’t know which direction was my apartment buildings, or which way was the correct street that they were along. At this point I noticed my phone battery was down to only a few percentages, so I started to panic, becoming visibly upset and starting to cry. The people who were coming into the parking lot to go to their vehicles were completely ignoring me being distraught. After a few more minutes my phone died I was alone in a parking lot, in the early/mid afternoon.
I began to panic more and started to scream for help in different ways—saying things such as help, help me, I need help—all while crying hysterically. For at least 15 minutes, if not longer, no one came to help me even though I could hear at least two or three people who had come into the parking lot to their vehicles along with multiple vehicles going down one of these side roads, all not caring that an obviously blind person was distraught. After what seems like an eternity, without any warning I was approached by a male who made me jump because I had no warning of his presence until he spoke. He asked me what was going on, and I tried to explain in my current state at the time what the problem was. It was then he had what I presume to be a female come over to me, and I pretty much got berated; not with yells, but I was scolded that I should not have taken out my trash…that there wasn’t even that much to be taken out.
I was talked down to as we were walking back to my apartment; I was told that I should count my steps, which is not an accurate piece of advice Think of a blind person, all because their family member who was blind did it so they deemed it proper to do. Thankfully they did in a way know how to do side guide, but it was when we got back to my apartment that I got overly frustrated internally because the person proceeded to take my cane which is a big no-no. I never grab a blind person‘s cane no matter what, don’t grab a blind person no matter what. He proceeded to take the bottom part of my cane and bump it into the bottom most step and ask me if I could feel the thump (as if I don’t know how to properly use my cane) and then proceeded to count to me the amount of steps I had (like I hadn’t done that myself before) and even told me which way was my door, that it was on the left (like I don’t know directions.)
This event was very traumatizing.
I went inside after trying to be polite to the person who did give me assistance, and I broke down as soon as I shut the door. I called my mom who is also blind and told her the horrific event, after I have been finally able to plug in my phone and charge it for it to come on. I proceeded to bawl my eyes out to her wanting to move home, and hating living where I was because absolutely no one help me for at least 15 minutes (I’d even venture to say it was closer to 30) and the person that did help me, even though they had the best of intentions, seemed to be patronizing and treated me like a child.
After getting home and charging my phone and getting on the call with my mom to tell her about what happened, which she already had known about because my aunt had told her what was going on, I told my mom that she was trying to get ahold of the police to try to have them help find me but my phone had died. I then got a knock on my door with two police officers who wanted to check and make sure I was OK. The police officers were the only good thing about living in that city at that time for the year than I did . I did not feel a sense of community whatsoever living there. Unfortunately, partial blame is on me for having signed a lease to an apartment that I haven’t seen in person first. I vowed that I will never rent or buy a property until seeing it in person because I want to never go through that ever again.
Catch up with Preston by following them in the Diversability Leadership Collective!
TW: Workplace Gaslighting, Hostile Workplace
Chapter 5
By Whitney Darling, she/her, Disabled Model and Officiant
Image Description: On the left is a picture of Whitney Darling, a pale skinned woman with long red hair with a full sleeve of tattoos on one arm sitting in a field of sunflowers. To the right is a black box with white text “Chapter 5 by Whitney Darling, she/her, Disabled Model and Officiant”.
My Disability Horror Story is all about the workplace environment and obtaining accommodations for your illness.
My backstory…I have had a disability my entire life and throughout my adult years, I have had a slew of chronic illnesses added to that original disability. I have worked full-time for my entire working career in the Human Resources field. It was not until my late 20s and early 30s that my disability and chronic illnesses started to heavily impact my working life.
At one point in my career, I worked 40+ hours a week at a company that was about ½ an hour drive from my home. When I came home from work, I would be in a lot of pain and on the couch unable to do much of anything. I was spoken to at work about my issues because they could tell something was not right and they even wanted me to think up ways for them to help me. I knew that I needed to do something. I could not keep living my life like this because not only was my work suffering, but I was suffering.
I am an extremely independent person and I hate asking for help, so this situation was very hard for me. For one thing, I was asking for help; growing up in an ableist society I felt like I was failing and that I was worthless. And for another, I knew if I did not do something, things would only get worse. I spoke with my husband, my mother, and my doctor and decided to ask for some workplace accommodations.
My workplace at that time had a mostly remote population, I was one of a few employees that worked out of the office; so, I thought; that if I could work remotely a day or two throughout the week then I would maybe be able to function. I thought this would not be a big deal to the company and was an easy sell. I decided to casually ask my then manager about this option and they said, “I don’t know if that would be allowed”. I was frankly shocked at the remark. So, I went about my business and obtained a doctor's note for this accommodation, and I set up a meeting with my manager.
On the day of the meeting, I handed the note over and spoke with my manager. I even mentioned; that if we must go down the route of the ADA; I WILL be going there. I was overly emotional because this is something I have never had to do, and it broke me. They shrugged and said that we do not have to go down the ADA route and that they would approve remote work, 2 days a week, this was said however very reluctantly. I started this schedule, and it was great for me, and I finally had some energy after work to take care of the house and frankly myself.
No more than 2 months after this whole fiasco happened that COVID hit. I remember going to work the day of the shutdown and being told to work from home until I was told otherwise. I worked remotely full-time, every day; for another 3 months. I fought for 2 remote days a week and now suddenly working remotely full time was fine. I never returned to the office…. until I was laid off and went in to collect my things.
It is odd how experiencing certain situations brings a new light to your situation. In this case, it brought to light my workplace environment. It also brought into light the ablest society within every single workplace. I always thought I would be at my previous employer forever but after that whole situation, my heart was bruised, I thought they cared. This was a lesson to me to always put myself first, if something happens to you and you are out for an extended period (past FMLA requirements) your workplace WILL replace you. Everyone is replaceable!
I am now lucky enough to work for a company that when I requested a remote day, gave it to me with no questions asked. They know my issues and if I am having a bad day and cannot come in, I can work from home. If I need to leave in the middle of the day, totally fine, just let someone know. This is how it should be!
Being in the Human Resources field, I’ve seen more and more employees ask for some accommodations which I’m really happy to see. I’m always on the employees' side during these meetings as I can heavily relate. Those with Disabilities are AMAZING workers and companies can reap what we offer if you just stop focusing on the ableist society and open your eyes to the possibilities.
I still hear horror stories from friends about asking for workplace accommodations and the company never responding to their request, sometimes even ignoring it. I tell them to do something about it but again that is A LOT of work, and sometimes we just do not have the energy for things like that. Getting accommodation at work, school, or just in society should not be this difficult. I will continue to fight for those seeking accommodations and keep pushing others in our society to do so. Being disabled should not be a horror story.
Follow Whitney on Instagram and enjoy this series of photographs from a shoot called “Chronic Illness” (image descriptions on each image)
TW: Medical Gaslighting, Medical Neglect
Chapter 6
By Mary Fashik, she/her, Disability Justice Activist
Image Description: On the left is a picture of Mary Fashik, a Lebanese woman with short, dark, curly hair and glasses. She is smiling at the camera and wearing a sleeveless navy-blue top. On the right is a black box with white text that reads “Chapter 6 by Mary Fashik, she/her, Disability Justice Activist”.
A few years ago, I was seeing a rheumatologist.
He prescribed me some medication to help manage one of my autoimmune conditions. The plan was for me to start on a smaller dose then move up to a bigger one (a total of two increases.)
After a few days on the first dose, I started to feel ill. I figured it was just my body getting used to a new medication. I increased my dose as instructed and started to feel worse.
I had no appetite and when I did eat, I couldn’t keep anything down. That continued as I began the third dose. I spoke to a nurse who told me to go back to the second dose.
My symptoms kept getting worse. It was the middle of summer and I would be under several blankets and my entire body would shake violently.
When I spoke to the nurse again, she told me the doctor wanted me to “hang in there” until my body adjusted.
Before starting the medication, I had a pair of shorts that fit me well. They were not tight but not loose. A week of this medication and the same shorts were falling off of me.
After doing my own research, I found out that patients on that particular medication have their dose increased over several months, not a total of 10 days.
I was severely overmedicated and I am still have side effects years later.
Follow Mary on Instagram and support her work as the founder of Upgrade Accessibility
TW: Death
Chapter7
By Andrea Loveday-Brown, she/her, Non-Disabled Disability Advocate, Mother and Writer
Image Description: On the left is a picture of Andrea Loveday-Brown, a 40-something year old white woman with short dark brown hair who is smiling into the camera and wearing a black cardigan with dangling gold and black circular earrings; behind her is a beige wall with a green floral framed painting. On the right is a black box with white text that reads “Chapter 7 by Andrea Loveday-Brown, she/her, Non-Disabled Disability Advocate, Mother and Writer”.
It was our second week staying in this small hospital room, as our six-year-old disabled daughter fought a tough bout of RSV.
Little did we know at the time that only weeks later Covid-19 would stop the world in its tracks. In that moment, it felt like we were the only family who had to fear catching a virus out in the world and bringing it home to our sweet girl. The only family who knew that the start of a new school year meant only a few weeks of peace before a predictable stomach bug or cold followed her or her sibling home. Because of the medical complexity that is part of our daughter’s chromosomal condition, a “slight cold” had led to hospitalization 4 out of 5 times for her.
A dear friend who happened to be a nurse in the same hospital came by to visit that afternoon. I watched her face closely as a group of nurses and doctors swarmed around my daughter’s bedside. Her oxygen had taken a dip, again, and she was having a harder time than usual recovering. My friend had always stayed strong and stoic during previous visits, assuring me that everything would be okay. She comforted me, saying the virus just needed to run its course. Her face in that moment told a different story; it was clear that she knew, as the doctors would soon tell me, that transferring to the ICU over an hour away was inevitable if my daughter didn’t start showing improvement soon.
My friend hugged me goodbye, and in hindsight I would have held on longer if I’d known that within a month we’d all be sheltering in place at home. I sat down at the couch that would unfold into my bed that night, again, and looked out the window. I tried to breathe in that extra sense of quiet that followed the scramble to increase my daughter’s oxygen levels and fend off the threat of the ICU. The excessive beeping, the sound of suctioning, the hushed but serious chatter between doctors had all vanished, seemingly as quickly as it started. I stared out the window numbly, floating in that kind of sorrow so deep that it can’t be felt. I looked up at the blue sky and at the trees surrounding some houses off on the hillside. My eyes drifted down towards the industrial looking building across the parking lot.
That’s when I saw the dead body.
A mere three stories down from our hospital room window, in plain sight, two men somberly wheeled a gurney draped in white cloth carrying a black body bag towards their mortuary van. I watched, stunned, as they carefully unloaded the deceased body into the van and minutes later drove away. That body was a human being who had likely begun their morning as a hospital patient just like our daughter. Making things even more unreal was the fact that this was now the second time this had happened during one of our hospital stays. The prior year, looking out the window in a similarly quiet moment, I had seen another dead body removed from the hospital and sent off to a mortuary directly from our window.
How was it possible that in designing this hospital building, not one person thought to keep the transfer area for deceased patients out of the sightline of the rooms in which people are to be resting and healing? Nobody considered the sick people and their family members actively fighting their darkest fears of mortality who might be surprised with the sight of a corpse out their window?
Something else shocking is that in neither situation did we have the bandwidth to file a formal complaint to the hospital. That may seem unimaginable, but the reality is that we were in survival mode, which shaves our expendable energy down to almost nothing. Even after my daughter recovered, thankfully without needing to transfer to the ICU, it took weeks of recuperating at home before we could return to anything close to normal life. By the time we feel settled again, it is even more challenging to revisit the hardships of the hospital stay, so we never followed up. This is the reality of living with a disabled child; the ableism that imposes these difficult moments upon us is the same structure that keeps us living in a survival state in which we struggle to keep up the energy to fight.
I can only imagine, as the pandemic took its grip that year, how many more bodies were seen out of those very same windows.
Follow Andrea on Instagram
TW: Workplace Discrimination
Chapter 8
By Maria Gurriere, she/her, Disabled Bookworm
Image Description: On the left is a picture of Maria Gurriere, who is standing against a white wall with her black hair pulled back into a ponytail wearing red glasses, a white sweater and a blue dress. On the right is a black box with white text that reads “Chapter 8 by Maria Gurriere, she/her, Disabled Bookworm”.
In June 2021 I found my perfect job—a librarian information desk position at a medium sized library.
I was hired after interviewing, and accepted to the surprise of my family; it had only been a month since I had earned my MLIS! I have difficulty walking and back problems—important later on.
All was dream-like until mid October, when my supervisor requested a check- in. No biggie...I thought. We talked, I worked on some stuff, and we checked in again mid-December. I was doing better but my co-worker in the same position was leaving. More work for me until they found a replacement, who comes mid February 2022.
Mid March 2022 I injure my back. I continue my job slower than usual but solider on, trying in vain to seek treatment.
In April I’m called to the Office. Supervisor, Assistant Director and Director say I’m not improving and (even though I didn’t know it) issue written warning #1. In April, warning #2 comes (didn’t realize these were warnings—I don’t know what I thought, being my first job).
April passes, May crawls, and June comes and goes. July enters with heat as I try to follow the new protocol set for me, as the pain in my back worsens, I become not myself and irritable as Doctors don’t have answers, but try and hide it at work.
On June 30th, working the desk, I am coming back to it from helping someone print something and trip over either my feet or a small lip that separates carpet from tile. I fall to the floor. I manage to get up by myself, unhurt, but don’t continue my shift, and head home early. I take the next day off, but head back to finish the week feeling fine. I finally think I’m safe as I haven’t had a meeting in a while.
I was wrong. So wrong. July 8th. A long full 8 hour day- 15 minutes to closing, and I am called the Office. This time, there are no pleasantries, I am served warning #3 and terminated. The paperwork doesn’t say my disability outright. It didn’t mention the fall. It said all the things I had worked on and thought I improved on.
You tell me. Disability related termination?
I’m still not giving up. Once a librarian, always a librarian. I’ll find a better place to work that accepts me for who I am.
Find Maria on Facebook
TW: Medical Gaslighting
Chapter 9
“Fine. Call the Cops.” by Deena Larsen, she/her
Image Description: On the left is a picture of a lonely wharf, empty of people with the destination far in the distant fog. A sign up front says in large red letters: Caution. In smaller black letters, it says "Use wharf and floating dock at your own risk." This photo illustrates that I am alone on this perilous journey. On the right is a black box with white text “Chapter 9 “Fine. Call the Cops.” by Deena Larsen, she/her”.
I have a rare bone disease where I grow multiple bone tumors, which are usually benign.
The only medical mention of these until about 2010 was that as the bone was benign, there was no pain and nothing to worry about. So every time I went in to the doctors to say that the pain in my knees, hips, and ankles was increasing, they patted me on the head and said that I had a rare bone disease and of course I should expect some pain. No x-rays, no nothing. (BTW, I live in the U.S. and had decent health care insurance. Imagine if I had not had that!). So I finally collapse on a Saturday retreat and can not stand up at all. I get taken into the ER and get an emergency MRI, etc. and I am sent home with a wheelchair--and no instructions at all. Apparently, I was lucky to even get the chair. (This chair was a manual, and so big for me that I could fit two backpacks on either side of me in the chair.).
I go to the recommended ortho the next Monday (this is an emergency, so they squeezed me in). The nurse puts me on the exam table and puts the chair on the other side of the room. The doctor comes in and does not even look at me. He says, "Ok, you have multiple fractures, mostly on the tumors but now some on the actual structure in your tibia, fibia, and femur. So we will go in and do a double knee replacement on Thursday, my first available surgery slot." I say, "um, no, I do know quite a bit about my rare disease. You are going to check for chondrosarcoma, then we will discuss my inability to heal, and you will note that when my bones are cut, it heals as bone." I hand him the peer reviewed journal literature that I could find, show him my wrist where the bone tumors healed over a nasty cut. He tosses my literature aside and says, "fine, we will do the surgery next Monday."
I said, louder, "No. There are complications with surgery for me that are not there for most normal people. I am not about to do surgery until we check to see if there is any malignancy and so forth. Please listen to me."
He says, "Fine. Next Friday surgery and that is my final offer." In all of this time, he has only looked at the MRI, x-ray, etc. on his light board.
I yelled, "Listen, buddy, we are doing surgery over YOUR dead body, and I am about to make that happen!!!"
He blanched, finally looked at me, and then ran out of the room. I am waiting, because the chair is on the other side of the room, and I know that if I move off the table I am going to collapse, have more issues, etc.
So then about 20 minutes later, two burly cops come in and are going to arrest me for bodily threats. I did get out of it, and they were nice enough to put the wheelchair by the exam table so that I could actually leave.
TW: Medical Gaslighting, Talk of Suicide
Chapter 10
By Jemma-Tiffany Rosewater, she/her, Writer, Advocate and Founder of Hyperacusis Awareness
Image Description: On the left is a picture of Jemma-Tiffany Rosewater, a girl with medium brown skin tone and dark brown hair in big curls wearing a green graduation cap with a yellow tassel, red lipstick, pink eyeshadow, small circular eyeglasses, and grey sound blocking headphones under her cap as she holds up a black leather book that says “Maryland State Diploma” in cursive. On the right is a black box with white text that reads “Chapter 10 by Jemma-Tiffany Rosewater, she/her, Writer, Advocate and Founder of Hyperacusis Awareness”.
When I was six years old, I began to experience pain from very, very loud sounds such as the cafeteria, weddings, and birthday parties—I was ok though as long as I wore earplugs.
At age 7 I started having awful migraines that would last for up to months at a time and were exacerbated by normal everyday sounds. I became unable to attend school and was put on home and hospital. My mother took me to a lot of different doctors but none of them really know what was going on; they said that I had chronic migraines with extreme sound sensitivity.
I became unable to go to the store, attend parties, go to restaurants, or even watch TV on a normal volume due to the physical pain these things caused in my head and ears. In the beginning of third grade my mother took me to see an audiologist as she felt like my sound sensitivity was more extreme than being just a “normal” migraine.
The audiologist said that I had a rare disorder called Hyperacusis. Unfortunately, many of the treatments that he had me do for my Hyperacusis only intensified my pain.
In third grade my IEP team started me off at school, which was very loud and painful for me. The pain eventually built up to the point where I was lying in bed for about a month and ended up on home and hospital again.
My mother took me to see many different doctors and therapists. Unfortunately, many of them did not believe me about experiencing physical pain from sounds. Many of the doctors thought that my condition was psychosomatic. Even the few doctors who did believe that I experienced physical pain still forced me to do desensitization and sound exposure therapy.
These treatments only worsened my hyperacusis which in turn led to me being even more sensitive to sound.
In fourth grade, I was transferred to another school. Unfortunately, many of these students would scream and bang loudly which was excruciatingly painful for me. The pain just continued to build up day after day and eventually I was no longer able to continue attending school and once again ended up on home and hospital.
I was receiving home and hospital instruction at an office building, and this was working quite well for me. It was quiet and I was able to learn without it being painful.
In fifth grade they decided to have me go back to that school again, only this time they said they would put me in a separate room by myself. Only the room they got me in was right next to the music room! The sound of the drums was so painful for me I felt like I was being beaten in the head and ears.
The pain once again continued to build up, and I could no longer attend school anymore and ended up on home and hospital once more. I spent most of my time in my closet or in my grandmother's underground basement and although I was in less pain as my environment was much quieter, I was under a constant high level of stress and fear as many of my doctors were still wanting me to do sound exposure therapy.
I felt miserable because no one understood Hyperacusis. I was so afraid they were going to make me do exposure therapy again as they were always talking about it.
After attempting suicide I ended up in a psychiatric hospital. The doctors there thought I was just being manipulative, and they did not believe that I experienced physical pain from sound; they thought that my Hyperacusis was something that I was making up.
They forced me to go to group therapy and eat meals with the other children who would often scream and bang. I was in more pain now than I had ever been in my life. I felt like my head was going to explode and my ears felt like they were on fire. Oftentimes I wanted to cry because the pain was so bad.
They tried to convince my parents that I was just being manipulative; that my Hyperacusis was purely a behavioral problem and that I did not experience real physical pain from sound. My mother did not believe this, however she and my family did implement the behavioral plan that they sent home with me when I was discharged.
I went to a day program for about a week after being discharged and the doctor decided to take me off of home and hospital. I started going to school at a special program and although it was quieter than some of the schools I’ve been to in the past, it was still extremely loud and painful.
Every day I was in extreme pain and the adults in my life did not believe me at home or at school. At home my parents tried to implement a behavioral plan which mostly involved exposing me to household noises daily.
Finally, I decided to do a lot of research of my own to try to find out more information about Hyperacusis. I wrote a research paper to my doctor and after about six months of me refusing to do the exposure plan, I finally got rid of it at home.
Unfortunately, I still continued to attend school. For me, attending school not only caused me pain while I was at school but also lingering pain on the weekends and days off. I often missed at least one day of school every week due to the pain from sounds.
My migraines were awful and the Hyperacusis was not improving at all. I still wanted to kill myself because I was in so much pain and I didn’t know if it would ever end.
I spent all of middle school suicidal and made another major suicide attempt in eighth grade.
I ended up in the emergency room although I was able to convince the psychologist on duty to let me go home. Things did begin to improve slightly after this, my doctors and parents agreed to look at some of the more recent research on hyperacusis.
I found out about a non-profit organization, Hyperacusis Research, and their research was what started to help my parents and doctors to understand. I also found an online support group on Facebook called Hyperacusis Support and Research. This was so helpful for me as I was finally able to talk with other people who had Hyperacusis.
In ninth grade they had to shorten my schedule; my pain was just too intense from all of the noise to be able to do a full day of school as I had several classes in the core, a noisier part of the building. I also received home and hospital instruction for math class which was helpful.
Beginning in April of 10th grade, Howard County school system transitioned to online education because of the pandemic. Distance learning has been wonderful for me, I was able to do my assignments and log into my classes from my room/closet with volume control. I no longer experience pain during the school day from the noise or suffer lingering migraines everyday.
I was able to finish high school virtually and this year I have begun online college.
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TW: Medical Gaslighting, Workplace Discrimination
Chapter 11
By Marie Dagenais-Lewis, she/her, Anti-Ableist Art Activist, Storyteller and Speaker
Image Description: On the left is a picture of Marie Dagenais-Lewis, a pale skinned woman with a gothic style with black and purple hair and black lipstick. On the right is a black box with white text “Chapter 11 by Marie Dagenais-Lewis, she/her, Anti-Ableist Art Activist, Storyteller, and Speaker”.
Living in an ableist society with rare complex diagnoses that the majority of the world has never heard of is one curse I wouldn’t wish on any soul.
I was born disabled with a rare genetic disorder called Multiple Hereditary Exostoses and live with Ehlers-Danlos Syndrome along with many comorbidities as well, although it would take over 20 years and irreversible trauma to make me finally identify as disabled. People who have only experienced the way doctors react to rare diseases through the medical dramas concocted by Hollywood producers have a warped sense of how our medical treatment goes. They see the “doctors” (ahem, actors) on primetime who go to the ends of the world to understand a patient’s rare disease and think THAT’S how it works, when in reality that’s just a form of ableist propaganda/inspiration porn. My lived experience as a complex patient with rare diagnoses has been nothing like what we see on television, it’s left me scarred and traumatized.
Out of my lifetime of doctor visits, I can count the number of doctors who actually knew of my diagnosis prior to meeting me on one hand. Society likes to act like the doctors are the only experts in the examination room but truthfully as a rare disease patient, we have to be experts in our own conditions. I’ve run into too many doctors who thought MHE was just bumpy bones that stop growing when we turn 18, or that Ehlers Danlos Syndrome only impacted the joints. Not a single one of my specialized team has been aware of the heparan sulfate defect that led to my MHE and how that same systemic genetic defect is potentially the root of many of my other problems. I spent years being told my complex chronic migraines were not connected to my MHE, only to find out migraines and other neurological problems were connected to defective heparan sulfate. Maybe it’s because I’m too complex, but I’ve had quite a few doctors tell me there’s absolutely nothing they can do for me—not that there’s nothing wrong with me, but that there’s nothing they can do for me. I’ve been failed by medical professionals so much to the point where I now expect all doctors to fail me.
But society doesn’t believe you when you say a doctor failed you—there’s no way, not a doctor! Has a doctor ever really failed at anything?
Yeah, they’re humans who fail daily too. One time, they failed me so badly I actually lost my life’s work because of it.
I had a transient ischemic attack (TIA) in 2020, and I did my job as a patient. My husband rushed me to the hospital, where they first accused me of being on drugs. We had explained my history of hemiplegic migraines and they literally said “what recreational drugs are you on because migraines don’t do that” while demanding I get up out of the wheelchair and walk after the TIA impacted my walking. I remember making a comment about how I wanted a nurse who had empathy for rare disease patients, but I didn’t really have the energy to fight. Once the drug screen I took came back clean, they were instantly too overwhelmed to deal with me; they said there was so much wrong they didn’t know where to begin. My stomach didn’t make any noise and the tumors in my knee freaked them out. They said my stroke symptoms resolved so they were sending me home without any scans to follow up with my neurologist.
So again, I did my job as a patient, and I followed up with both my local neurologist and out of state one. Scheduled an appointment with my local one to go over my after-stroke care, even though I had just seen him not even two weeks before. His office was a private one that didn’t give patients access to their records like the public hospital system does through mychart. I had put my faith in this doctor that he put the life threatening medical emergency I had at the young age of 26 in the medical record—I mean, that’s part of doing their job right?
Well.
I found out the hard way that not every doctor records life threatening medical emergencies, when a few months later I needed him to corroborate I had a TIA to my workplace—but he couldn’t, because “it wasn’t in his file” he had for me. It didn’t matter that I had other medical records that “proved” I had my TIA. After that doctor didn’t validate it they refused to accept a screenshot of my medical record with the public hospital system listing “transient ischemic attack” as one of my many diagnoses. I had a target on my back ever since I started using my FMLA accommodations two years before; since that one doctor didn’t explicitly record my stroke in his file, my former employer had what they needed and fired me for “mis-portraying the severity” of my disabilities. Again, you assume when you specifically go to a doctor to follow up after a life-threatening medical emergency that they recorded it in their file; if I’d had known that wasn’t the case, I would have used my out of state neurologist who I KNEW had put it in their file.
I lost my almost 8 yearlong broadcasting career because of this…the one I spent 5 years of school working towards. Then, I got to spend a year and a half fighting the system through the EEOC before I ultimately gave up. I couldn’t take the re-traumatization I went through every time I had to relive it. Over 14 years of my life down the drain. I needed to start to heal, and I couldn’t do that when there was a chance a court could tell me what happened to me didn’t count as disability discrimination.
When we are young and disabled, they teach us to be naive by telling us we can do anything we want as long as we try our best and rely on our medical care team; I never imagined this would be my life. I don’t like to think of that though and try hard not to wallow in the misery that weighs on my shoulders. Like a Phoenix, I’ve been able to rise from the ashes. But…living in an ableist society with rare complex diagnoses that the majority of the world has never heard of is one curse I wouldn’t wish on any soul.
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TW: Suicidal Ideation, Trauma Healing; CW: Dance film has some glitching effects
Chapter 12
By Vanessa Hernández Cruz, she/her/ella, Disabled Dance Artist, Poet, Filmmaker and Disability Justice Activist
Image Description: On the left is a picture of Vanessa Hernández Cruz, a Disabled Chicana with caramel skin arching her back on the floor while holding her purple walker, Pluto. Pluto is lying on its side. Vanessa is wearing an electric blue mesh/fishnet shirt with a silver skirt. Her brown hair is down, and she is wearing grungy makeup. On the right is a black box with white text that reads “Chapter 12 by Vanessa Hernández Cruz, she/her/ella, Disabled Dance Artist, Poet, Filmmaker and Disability Justice Activist”.
This piece was inspired by the incidents that have changed me.
There is this image that disabled people are strong and inspiring individuals. But can I challenge that?
How do I shed the light to our inner struggles? Our vulnerability?
How do I share that it is not about overcoming our disability but overcoming how society has constructed disabled people’s lives as a constant barrier. How society made us feel like a burden?
How society created this image that disabled people are unloveable?
How society made it difficult for us to pursue our dreams and aspirations. It’s nearly impossible.
How do I share that disabled people are still segregated?
I have had my extremely dark days, where I didn’t want to live. I’m still healing from that. I’m recovering from that. Here is the thing once we start fighting for our rights, we are constantly left alone to fight. There is this avoidance that occurs when discrimination is at bay.
How do I change that?
It’s difficult to reach out because of the stigma that my community faces. Who can I trust to be vulnerable when we are constantly are forced to be vulnerable. It’s a paradox. “Tunnel” is a piece that I hope people can relate because mental health is often stigmatized. I talk about my anxiety freely because it’s real. I’ve been told to “get over it” “to just stop” but it does not work that way.
CW: Glitching effect used
A film created by Vanessa Hernandez Cruz called “Tunnel”. The first 4 minutes consists of an artistic dance with various sound effects before a spoken word poem begins around 4:13. Towards 6 minutes in, the scene is illuminated by glowing lights, like the light at the end of the tunnel.
TW: Dental Surgery
Chapter 13
By Jennifer Subjeck-Fedus, she/her, Chronic Illness Warrior, Mom, Podcast Host and Coach
Image Description: On the left is a professional headshot of Jennifer Subjeck-Fedus, who is a pale skinned woman with golden brown hair gracefully falling on her shoulders wearing a black jacket. On the right is a black box with white text which reads “Chapter 13 by Jennifer Subjeck-Fedus, she/her, Chronic Illness Warrior, Mom, Podcast Host and Coach”.
I was 18 years old and just like any other teenager, it was time for me to have my wisdom teeth pulled.
I was referred to a local surgeon by my primary dentist. In having trust in my health care team, I figured they had the best to refer their patients to. So the next day, I scheduled a consultation with the oral and maxillofacial surgeon. Of course, with my luck, I only had three of the four wisdom teeth come in: both of the uppers and the bottom right. He explained to me that I needed to have my extractions done in two separate appointments because they normally do the upper in one visit, then the lower in another. I was completely fine with that.
The following week I was scheduled to have my upper completed first. It was a bit painful, and I was really swollen, but I healed in a few weeks and was set to come back for the lower in a months’ time.
I figured this time I knew what to expect so I was more relaxed. They started to administer the laughing gas and I was feeling a bit loopy in no time. I started to feel some tugging and pulling. It became a bit uncomfortable pretty quickly. The dentist started talking to his assistant and I had a gut feeling something wasn’t right. I instantly began to feel very aware of what was happening. I started to sweat and my heart began to race. What was going on? I turned to look at their faces and it was as if they didn’t want to make eye contact with me.
After they stuffed my mouth with a handful of gauze, they told me it was over and sat me up. I felt nauseous and extremely nervous that something didn’t go right. After the procedure they told my mom and I that the lower tooth was buried pretty good and grew in sideways. Sometimes when this happens there is an added risk that some nerves may become compromised. Of course! Just my luck! So, it was a waiting game. The next few days I spent spitting out blood and gargling with salt water, and unfortunately the lower portion of my mouth was still numb. I developed a fever and was in a ton of pain. My face looked like I had been storing oranges for the winter and was all sorts of pretty colors. I was told that it could take up to a week to regain feeling. So I waited some more…
After a weeks time it was clear that there was damage done to my nerve. I went back to see him a couple times and he just kept telling me that, “unfortunately sometimes this can happen.” Just great! Now what?
It was an absolute awful feeling to not have any sensation on the right side of my tongue. It was even affecting how I spoke. So, months later the swelling finally subsides and the discoloration goes away. But I am left with permanent numbness on the right side of my tongue. The “worst case scenario” had come true.
I had to relearn to speak and chew mostly on the left side of my mouth. I was constantly biting my tongue and would frequently burn my mouth on hot soups or liquids. It became something I had to learn to “live with” and I was in denial. I was full of emotions. I spent many nights crying myself to sleep that this happened to me. I was angry that my dentist referred me to this clown, who come to find out had horrible reviews. If only I had researched him. But the internet was so new then, there wasn’t a place to search like there is now. I had put my trust and health in someone else’s hands, and it backfired. It taught me to do due diligence on every healthcare professional from here on out when it comes to mine and my family’s health. This was a lesson for me for the future.
So, here I am 25 some years later; I still bite my tongue and I still burn my mouth. I have to inform every dental hygienist before my routine cleanings what happened to my nerve because when they use the plaque scrapper or floss in the back of my mouth, I get a stabbing pain down my tongue that causes me to flinch.
In closing, I ask you to please research any health care professional on your health care team. Even if they were a referral from a previous doctor or acquaintance. Get a second opinion if you feel strongly that something doesn’t feel right. You know your body best! Don’t be afraid to speak up, this is your life and you deserve to live it to its fullest. There’s one thing to live a long life, but we want to live a long, happy and healthy life too!
TW: Medical Gaslighting and Verbal Abuse
Chapter 14
By Nico Meyering, he/him, Disabled Civic Leader, Speaker, and Project Manager
Image Description: On the left is a picture of Nico Meyering, a blonde haired man with glasses and a blue-green dress shirt, standing in front of a bookcase; on the right is a black box with white text “Chapter 14 by Nico Meyering, he/him, Disabled Civic Leader, Speaker and Project Manager”.
Each time I go to sleep I need to use a mechanical ventilator called a BiPAP.
BiPAP machines are not the same as CPAP machines and the two cannot be used interchangeably. BiPAP machines are more involved and more complex than CPAPs.
After moving to Philadelphia, I needed a sleep doctor. I got matched to an award-winning, widely recognized doctor that my own disability's support group had identified as a specialist. Although it took a lot of time and energy to make a doctor appointment and to collect all of my medical records I knew I needed to do the work to get the best health outcomes. My overall goal was to get a new ventilator to replace the one I had been using since high school over ten years ago.
I had a sleep study where staff monitored my vital signs throughout the night.
I was so surprised when, at my next doctor appointment a week later, my doctor gave me a CPAP machine to take home. It was the wrong kind of equipment! That ventilator could never adequately breathe for me while I was asleep. Without proper ventilation during sleep I would quickly die.
I tried being polite but firm. I even handed the doctor all of the medical articles I'd printed out to give him about my diagnosis and proper care. He refused to take the papers and swatted them out of my hands. He tried to finish meeting with me and wouldn't give me the BiPAP I needed. At the end of my rope I said, "If I take this machine home and use it I will die. Are you comfortable being responsible for my death?"
The doctor, Jorge Mora, pressed his face to mine, our noes touching. "That is inappropriate what you just said to me! It is INAPPROPRIATE." he raised his voice. Would my demise have been appropriate?
"Go and do the research!" I urged him again. "Go and do the research." After I refused to leave the room Doctor Mora took the CPAP equipment into another room.
After ten minutes he re-entered and apologized, muttering about how we had both been mistaken for different reasons.
I got the BiPAP vent I needed. I have even worked successfully with Doctor Mora several times to coordinate my care; it's not like there are hundreds of specialists for my condition, so I have to work with whoever is available. While we haven't had to come face to face since that day I'm always a little more on edge when I have to work with him.
The work I do every day for Disability Rights and Disability Justice is so no other Disabled person has to go through what I went through.
TW: Medical Gaslighting
Chapter 15
By Rhia “Pam” Steele, she/her, Blogger, Writer, Health Advocate and Activist
Image Description: On the left is a picture of Rhia just being herself; she is a pale skinned woman with blonde hair wearing a blue and white patterned top. On the right is a black box with white text “Chapter 15 by Rhia “Pam” Steele, she/her, Blogger, writer, health advocate and activist”.
My "actual" entire story, is SO long, it takes up 3 books I am currently writing.
From the time I was 17, I suffered from Migraines, had already had a knee surgery, and was told by some doctors "You are TOO young" to have "Arthritis Problems". That was in the late 70's, but "Medical Gaslighting" existed, especially for women in pain.
I spent YEARS looking for the correct physicians that would take me seriously, who would find out what was wrong with me and STOP telling me I was "depressed" “stressed" or possibly "just thinking I was ill". It has been a very long journey, and until I was about 40, I put up with every kind of what I would call "medical abuse" by most doctors just because they could not "find something in lab work” or on a CT Scan, as I tried to tell them when I had double Hernia's. They could not be seen, felt or even show up on a sonogram UNLESS I stood up! After going through several tests and visits to my PCP, I made an appointment with a local general surgeon here whom had done a couple of things for me in the past. When I explained to him what was happening, he asked me to stand up, immediately "felt" BOTH hernia's and said I needed surgery to repair them, or they would just get larger.
I've tried over the years to explain to Orthopedic doctors/surgeons what could be "wrong" with a certain joint etc. This is the TRUTH EVERY CT SCAN OR EVEN MRI'S, WOULD NOT SHOW THE ISSUE. It has always been a "leap of faith" for the surgeons to open it up or do an arthroscope and FIND out, I was basically right in what was wrong. I had my Orthopedic surgeon who did 2 cervical spine surgeries on me, tell me once "I was NOT a "radiologist", and he might as well called me an idiot. After he did the surgery on my neck, and found out I had pretty well told him the issue, he DID APOLOGIZE TO ME AFTER SURGERY. That does NOT happen much.
It is truly a shame. We have come so far, but still live in the "dark" when it comes to some doctors and the way they feel about our opinions about OUR OWN health. I suffer from several different illnesses, ranging from RA, Lupus, osteoporosis, several joint replacements, chronic pain and the list continues.
TW: Medical Gaslighting
Chapter16
By Tylia Flores, she/her, Author & Disability Activist
Image Description: Afro Latina sitting in her blue wheelchair wearing a blue shirt with a camouflage hat with grey beard to the left of a black box that reads “Chapter 16 by Tylia Flores, she/her, Author & Disability Activist”.
This story takes place when I was 17 years old.
I had gone to the orthopedic specialist for my AFOS and my dislocated hip; the Orthopedic specialist decides to examine me and she says…
“This is the worst case of the disease I've seen in quite a long time and I don't think you've been very successful in your life because of what you gone through”.
I told her…
“Cerebral Palsy isn't a disease and if this is the worst case of Cerebral Palsy you've seen, God bless you, because I can assure you there's way more people worse off than me.”
Then I said…
“you're being quite discriminatory and quite ableist toward me because you're assuming that I can’t achieve much based on my medical diagnosis and what you learned in medical school.”
I said “sometimes, what you learn in medical school isn't always right.” and wheeled out with pride.
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TW: Ableist Coworker
Chapter 17
“You sit here.” by Deena Larsen, she/her
Image Description: On the left is a picture of a well modified chair with ducks on all corners against a gray cubicle background. The image is to provide the point that humor and wheelchairs do belong in the office. To the right is a black box with white text that reads “Chapter 17 ‘You sit here.’ by Deena Larsen, she/her”.
I have an odd disease where I look fine from the outside, but I can dislocate at anytime.
I ignored the doctors who said it was "just your bone disease, dear." and proceeded to walk for over a decade on multiple fractures. I then finally collapsed on a weekend retreat into a wheelchair. So I am walking on the Friday, and then back to work on the next Wednesday in a brand-new wheelchair.
I get to my meeting early and everything goes the way it normally does. We discuss stochastic hydrology and modeling results so I can write this up in a technical journal. No problem. I then try to leave the meeting in this new device and suddenly Joe, the hydrologist, sees that I am now using a wheelchair. He then speaks v e r y s l o w l y and s i m p l y as if I were now a child as we go down the hallway: "Can I press the elevator button for you? What do you need?"
I turned to him: “Joe--you sat down. Did you lose 50 points off your IQ when you sat down in the meeting?" He shakes his head. "Well, I'm sitting here and I did not lose any of my IQ, either!"