When I applied to Sandia, I struggled with how to answer the section asking if I had a disability. Being deaf or hard of hearing was listed right there, along with neurodivergence, traumatic brain injuries, physical impairments and a host of others.
I was deaf, but just in one ear, and my right ear, the good one, has got me this far without any trouble. So, do I consider myself to have a disability? I don’t. But do I have one? I do. And so, I checked the box.
My story
I was 17 when I lost the hearing in my left ear. It happened suddenly on Nov. 7, 2000. I remember the date because it was election day. It was also my mom’s birthday. The doctors, at the time, believed that an arachnoid cyst found in my brain had burst and caused me to lose the hearing in my left ear and develop a severe, albeit temporary, facial paralysis on the same side.
My ability to smile, raise my eyebrow and scrunch my nose eventually came back. My hearing, however, did not. But if I’m being honest, I didn’t care about the hearing loss, so long as it meant my face, the part of me that people could see, would return to normal.
So that is perhaps why, even now, my hearing loss seems like the least bad thing that could have happened.
I’m 41 now and have been deaf in my left ear longer than I could hear in both. I’ve learned how to navigate the world, as much as possible, with my hearing ear out. When I go out to eat with family or friends, I consider which seat will allow me to hear as many people as possible, but I often still need to ask someone to switch seats so I can be on my hearing ear. I avoid circular tables because someone inevitably ends up on my bad ear. When I go to the movies, a conference, a concert or my kid’s soccer game, I try to find a seat on the farthest left end. When I’m in a group, I constantly need to adjust where I’m standing so I can hear whoever I’m talking to. I still don’t always hear what people are saying, sometimes I’ll ask folks to repeat themselves, other times I just smile and nod, pretending I heard. There have been so many times where my husband, mom or son whisper something in my left ear, and I have to remind them, “wrong side.”
I know there are times I’ve come off as rude or people have thought I was ignoring them, when in reality I just couldn’t hear them. My husband jokes that he’s my good ear, and he is, although I know it drives him a little bonkers that I never hear my alarm clock.
I’m generally comfortable telling people that I’m half deaf, especially if they’re talking into my bad ear. For the most part people are receptive, but the funny thing is, they often keep talking, sometimes a little louder, but still into my left ear, not seeming to understand that that ear is 100% out of order.
Laura Sowko
Laura, a technical writer, is also deaf in one ear. She lost her hearing in her right ear when she was 40.
Doctors have told Laura that her hearing loss is of an unknown etiology, which she says is just a fancy way of saying they don’t know what caused it. When she first lost her hearing, she wrote a long letter to her friends explaining the situation.
“Some of them remember which ear is my good one, some don’t. I just have to remind them,” Laura said, reflecting my own experience.
“When I meet new people, I tell them I’m profoundly deaf in my right ear. I phrase it that way so they understand I’m not just saying I can’t hear well,” Laura said. “When I simply say, ‘I can’t hear,’ people will add that they can’t hear well either. But it’s not the same.”
Like me, Laura pays careful attention to her seating arrangements. For example, in Steve Schiff Auditorium, she sits all the way to the right to minimize sound coming from that side. Laura’s daughters are strong advocates for her as well; as my husband might say, they’re her good ears.
“When we go to the store and I’m trying to interact with a clerk, they help a lot as I often can’t understand what the clerk is saying,” Laura said. “They’ll lean forward and say, ‘She’s deaf.’”
“I struggle when people talk too fast,” Laura said. “It’s helpful when people can slow down, face me and pronounce their consonants clearly.”
Laura’s biggest challenge, which I believe many people with hearing disabilities can relate to, is navigating crowds and socializing in groups.
“It can be isolating; I find myself reluctant to participate in social situations. At parties, for example, I can’t just join a conversation because I struggle to hear what people are saying, even with hearing aids. I also mistakenly interrupt others because I can’t always tell when someone is speaking,” Laura said. “It can be embarrassing.”
When I asked Laura if she identifies as someone with a disability, she expressed the same reluctance I have felt.
“I think my hearing loss is a disadvantage, yes, and it can make some things more difficult,” Laura said. “But I don’t necessarily think of myself as disabled.”
Keith Morris
Unlike Laura and me, Keith has no issues identifying as disabled; he sees autism as a core part of who he is.
“I am a disabled person; I’m not a person with disabilities,” Keith, an electrical engineer with Sandia, said. “I am autistic, I’m a musician, I’m a recovering alcoholic, I’m a dad.”
Keith was 54 when he was officially diagnosed with autism.
“I was working with my therapist on my anxiety in social situations and stumbled across an online forum where a group of autistic people were discussing the difficulties they had with small talk,” Keith said. “They were describing my exact experience.”
From there, Keith took a self-assessment and then a formal one. The process took several months, but when the results came in, he said he didn’t need to see them; he already knew.
For most of his life, Keith assumed everyone felt the way he did and that no one was getting their needs met. As a child who excelled in school, he learned not to ask for help because when he did, teachers would tell him, “You’re smart. You can figure it out.”
And so, he did.
“I got really good at what we call masking and compensating,” Keith said. “I found a way to get by — by faking it, suffering in silence or some combination of those.”
For a time, Keith would self-medicate to quiet the chaos and discomfort he felt.
“Of course, that became problematic,” he said. “Self-medicating can be common for those diagnosed with autism later in life.”
Keith has since found healthier support systems since his diagnosis and adds he’s better at predicting and managing his needs. This involves limiting his social interactions, especially when it comes to small talk.
“For people who are not autistic — we call them allistic — small talk is used to form connections. But for those of us with autism, it’s the reverse. We need to form a connection before we feel comfortable making small talk,” Keith said. “I’m not trying to be rude. I just don’t know how to fake feeling a connection.”
Keith points to the social model of disability to explain how most of our social structures are organized so that only some people, usually able-bodied, fit in naturally while others are excluded.
“Someone who can’t walk up the stairs isn’t doing it wrong,” Keith said. “And it’s the same for someone with autism. We’re not doing small talk wrong or making eye contact wrong; we just have different needs.”
Michael DeAntonio
Michael, a physicist at Sandia, was diagnosed with chronic sarcoidosis at the age of 29. This rare disease affects between 150,000 and 200,000 people in the United States. It’s a long-term inflammatory condition that occurs when tiny clumps of immune cells form in the organs, most commonly the lungs and lymph nodes, leading to symptoms such as fatigue, shortness of breath and a persistent cough.
Michael has an advanced condition affecting his lungs and joints, which, on his good days, makes him feel as though he has the flu. “On a bad day, I feel like my bones are broken,” Michael said. “Doctors call it a flare-up, but I’ve talked to other patients, and we agree it feels more like a crash. When this happens, I feel nauseous, dizzy, overheated, breathless and extremely fatigued.”
For Michael, these crashes can occur every two to three weeks and last anywhere from one to five hours.
Before his diagnosis in 1991, he described himself as the kind of person who would ride his bike 10 miles to play soccer, then ride back and feel fine. “I can’t ride a bike at all anymore, and I can’t run more than 50 feet without getting winded,” he said.
The daily fatigue has had the most significant impact on his life. “People who don’t know often assume I’m lazy when I’m unable to do things that most people can,” Michael said. “This is usually what prompts me to explain my condition so they understand why I can’t lift heavy items to help someone move, play games or go on a long hike.”
While Michael is comfortable discussing his condition today, that hasn’t always been the case. “I had a group of friends who knew, but other than that, I hid it from people,” he said. “I would force myself to push through a crash and engage in strenuous exercise just to appear normal. But then I would go home and completely collapse.”
Today, Michael has adjusted to what he calls his new normal. He understands what he can manage, what he cannot and who to inform when he feels a crash coming on. “I tell you it feels like the flu, but I’m used to the flu,” he said. “Just by looking at me, most people have no idea how much I suffer, and I think that’s true for many people with invisible disabilities or illnesses.”
“You just never know what someone is going through, and people aren’t always going to tell you,” Michael said. “We’re not trying to be mean or evasive; we’re just trying to manage our way through life the best we can.”
Amelia Henriksen
Amelia, a data scientist with Sandia, remembers how her sister would blast music in her room when they were growing up.
“It was the only way she could get homework done,” Amelia said. “So, she’d be listening to music on full blast, and I would be freaking out because I was completely overstimulated from all the sound.”
Amelia said she was often accused of being dramatic or overly sensitive for her reactions, like the ones she had about her sister’s music, but she’d later learn that she had auditory and tactical hypersensitivities. Both of which are common for those, who like Amelia, have an anxiety disorder.
Amelia went 23 years without knowing why she felt the way she did. Sometimes she assumed everyone felt the panic she did. Other times she believed it was her fault that she didn’t have the control she should have over her emotions.
“As a child I had severe testing anxiety, but at that time I just thought everyone would hyperventilate, cry and basically have a full-blown anxiety attack before tests,” Amelia said. “I look at my younger self today with a lot of compassion because the societal messages I had back then was that I was in charge of my response and my reaction to things, which meant I didn’t have enough control over myself and my emotions, so it was my fault. It was really frustrating.”
Like Keith described, Amelia excelled in school but struggled to get the help she needed.
“I thought as long as I was doing well and getting A’s that I didn’t need help,” Amelia said. “But I did.”
Today Amelia has the language she needs to ask for help and communicate how she’s feeling. She was also diagnosed with depression and has found that while antidepressants don’t stop her from having anxiety, they do interrupt a spiral.
“It gives me just enough breathing room to implement a coping strategy, instead of completely spiraling into a panic or anxiety attack,” Amelia said.
Making lists is one of Amelia’s primary coping strategies, which aligns well with her job as a data scientist. Noise-canceling headphones help with her auditory hypersensitivity, especially at work. And she keeps Sharpie fine-tip pens on hand to doodle.
“Doodling is a big one,” Amelia said. “I’ll draw on paper, my arms, legs and hands to help calm me down. It’s a grounding technique I use to help connect me to my body, which helps me connect with my breath.”
Amelia said that most people don’t know she has anxiety or depression unless she tells them, and typically they’re quite surprised.
“People often assume that if their colleague or loved ones were depressed, they would notice, they’d pick up on it and be able to respond and help,” Amelia said. “But the fact is people don’t always notice, it can be hard to spot and tends to be associated with feelings of shame. Someone may ‘seem’ fine at work but that doesn’t mean they didn’t spend an hour trying to get out of bed that morning.”
Contrary to what society told her as a child, she knows now that happiness isn’t always a choice. As she explains, for some, their brain chemistry just doesn’t work that way.
Listening to Amelia, I thought of the many times I had echoed that same message to people close to me, “You’re in charge of your own emotions.” Talking to Keith, I thought of conversations I have had where small talk failed, and I just assumed whoever I was talking to was rude. I think Michael summed it up best, when he said that we can never assume we have all the details.
Not all disabilities are visible and not everyone is going to be comfortable disclosing or even talking about them, so perhaps the best thing any of us can do is to assume less and give each other a little more grace.