Have you ever had a hard day due to something others couldn't easily see? Perhaps you had a bad headache and struggled to get through the day. If so, then you might be able to sympathize with those that have invisible disabilities. Nobody could see your headache, but you could feel it, and it affected you. Invisible disabilities are physical, mental, or neurological conditions that can't be perceived by looking at someone. A few common ones are diabetes, ADHD, dyslexia, chronic fatigue syndrome, and fibromyalgia.
I have an invisible disability, Pulmonary Arterial Hypertension (PAH). PAH is high blood pressure that affects the arteries in the lungs and the right side of the heart. My family and friends know I have PAH, but what I don't often talk about is that I have another disability, depression.
After I was diagnosed with PAH, I attended a support group. One of the most surprising things I learned was that many attendees had multiple disabilities, just like I did. Some of the disabilities were easy to see, while others were invisible. Until it happened to me, I hadn't considered that it could be completely. normal to have more than one diagnosis.
If there is one thing I wish others could learn from my ignorance, it's that you can''t fit us in tidy boxes sorted by disability. Every person with a disability is different, and what you may see on the surface, or know from a conversation, may not be the only thing affecting them.
ABOUT THE AUTHOR: Kelly Stover
Kelly Stover: A smiling woman with dark hair and glasses stands in front of a door.
I’m Kelly, a pharmacy technician and music lover. I enjoy playing video games and ttrpgs in my spare time.
Hi, you my name is Brian Springer. I am 41 years old, and I am from Houston Texas. I went to Deer Park Hgh School and graduated in 1999. I moved to Mississippi when I was 19 and got a job working on a tugboat barge. I then left and did the auction driving cars, detailing and driving wreckers and forklifts. A few short years later I worked on commercial refrigerators until my back injury in 2002. I also have spina bifida occulta, autism, ADHD, anxiety, and depression. My hobbies are playing with my son, installing stereo systems, hanging out with my fiancé, and learning how to wire 12 volt battery systems. These hobbies help with my anxiety and depression. I have only had one surgery when I broke my back and pelvic. Now I can’t work, but I don’t let my disabilities stop me from helping my fiancee, getting on the floor and playing with my son and helping my future father in law around the house.
ADDITIONAL INFORMATION:
Brian enjoys creating inventions. Down below an image of one of his inventions. It is a very bring light made with various parts. This bright light will be great to use during a power outage.
It’s got a Bluetooth car stereo a 12-48v dc light 💡 dc USB ports one cigarette lighter 12v plug and a plug to run a fan it has 4 DEWALT 20v battery’s charging of of a laptop 20v charger
Spina bifida also known as split spine. A birth defect in which a developing baby’s spinal cord fails to develop properly. There are fewer than 200,000 cases per year. There are three types of Spina bifida occulta also known as hidden spina bifida, myelomeningocele and meningocele.
Occulta- Also known as hidden spina bifida. It is when a baby’s back bone doesn’t fully form in pregnancy. The baby is born with a small gap in the bones of the spine. Spina bifida occulta is common and happens in 1 in 10 people.
Meningocele- A birth defect in which a developing baby’s spinal cord fails to develop or close properly in the womb.
Myelomeningocele- This is the most severe causing paralysis, bowel and bladder difficulties.
Hydrocephalus- Water on the brain.
Shunt- A narrow piece of tubing that is inserted into the brain in the fluid filled ventricle. The tubing is then placed most commonly in the abdomen but can be placed in the heart or lungs.
Hello, my name is Courtney I was born in 1989, and I was immediately rushed to Riley hospital in Indianapolis due to a hole in my spine. I have Spina bifida myelomeningocele, the most severe type causing me to be in a wheelchair for the rest of my life. I have had multiple surgeries due to my disability: 4 back surgeries, bladder and bowel augmentations, 3 shunt replacements just to name a few. But I don’t let my challenges stop me from doing the things I like to do. My hobbies are hanging with my fiance Brian, playing with our son, art, writing, and listening to music.
I will say this: Being a disabled parent to “Spider-Man” has many challenges. . The most challenging things are lifting, bathing, and dressing him. But there are many rewarding times in being his mommy, such as his smile and him waiting for me in the morning for snuggles and our play time. Yes there are many struggles, but Brian is always by my side as a wonderful support. He has built a carrier that attaches to my electric wheelchair so on walks, in stores, at the park and many more places, I can put him in the car seat and wheel him around that way.
I also have anxiety and depression so some tasks are harder to handle than others. The biggest task that is hard for me would be large crowds. I have trouble with severe anxiety speaking in front of people so writing is an outlet for me to deal with my emotions. But in the last few years Brian has been working with me on getting over my fears.
“I hate going to the airport. They always want me to use a wheelchair and it makes me feel so old,” said my 87-year-old former neighbor the first time we spoke on the phone in over fifteen years.
She, of course, knows that my brother and I both use wheelchairs because of a car accident when we were children. That didn’t stop her from saying something that betrayed a very destructive underlying belief about disability: that disability—or the appearance of disability—is shameful and must be fought against as though you might otherwise drown, even if that resistance is ultimately to your own detriment.
The cultural pressure to be strong, able-bodied, independent, free from illness, and perpetually young is damaging to society in general. I call this tendency to emphasize or even playact ability in order to fulfill the cultural expectation of what it means to be a relevant, whole human being “toxic capability.” Such a term is valuable because, in naming toxic capability, we can become better at recognizing it in ourselves and in the world—and recognition is the first step toward eradication.
Very often, a person exhibiting toxic capability resists or refuses care or assistance they actually need for their health, mobility, pain management, peace of mind, or access to the larger world. They may choose to do without rather than suffer the “indignity” of appearing weak or disabled or of being confirmed as disabled—sometimes just in their own mind. Even those who do accept the care or assistance they need may only do so with a cloud of shame surrounding that need.
My own mother, a fierce advocate for people with disabilities, resisted using a cane until long after she needed one. Her identity as an able-bodied person continued to fracture with age, and yet, internalized ableism made her reject a disabled body as her own.
Internalized ableism is the subconscious, internal preference for able-bodied people over disabled people. No one is immune from this type of bias, including friends and family of disabled people and even including disabled people themselves. Often, this internalized ableism is externalized in the form of inadvertent microaggressions that reinforce the notion that, in the hierarchy of ability versus disability, disabled people like myself will always be at the bottom—and there’s no elevator up.
For so long, my mother had been the mother of, caregiver to, and advocate for people with disabilities, while never wearing the mantle of disability herself. But when she finally accepted her identity as a disabled person, she was able to move around with much greater ease. Soon, after owning one cane, she owned five, with different designs, like pink roses and iridescent butterflies. Beautiful and practical, these tools empowered her to walk safely again. Her life was made better by acknowledging and honoring her status as a disabled person.
It’s no wonder my mother struggled with her shifting identity. After all, we observe from a very young age that society prefers and caters to able-bodied people, while often pitying, excluding, mocking, and patronizing disabled people. We learn well the subconscious lesson that ability is best and resisting its inverse is strength.
Ironically, accepting help, care, and accessibility tools actually requires a strength that many people don’t have. This is real weakness: to deny the needs of your body and mind because you can’t bear having those needs in the first place.
You may think you’re only applying these “standards” to your own self and body, but they have a way of seeping into how you view others too. Just a few ableist microaggressions I have personally experienced include a family friend seeing a picture of me and my sister and exclaiming with a smile, “You can’t even tell she’s in a wheelchair in this one!” Or a distant relative saying to my sister, “I don’t know why Ashley keeps referring to herself as disabled. I don’t think of her as disabled at all.” Or an able-bodied stranger in a coffee shop telling me, “I’m praying for you to be whole again.”
I am whole and I am disabled—and I reject the ableism that makes someone try to re-form me in their image.
Toxic capability harms me and other disabled people and it keeps able-bodied people from better health and better access to the world and the things they need and enjoy, and it sabotages them from having more equitable relationships with marginalized people.
Just like other internalized biases, it is important for us to do a better job of recognizing internalized ableism and toxic capability in ourselves and others—and to analyze and interrogate those biases.
Think about your own life. The times you decided you didn’t need the blood pressure medicine your doctor prescribed. The times you pushed past your healthy limits while working out so you could prove how strong you were. The times you refused assistance from a friend because you pride yourself on not needing anyone to help you. The times you avoided addressing your mental health issues. What is at the root of all of these refusals?
This may be a difficult question to answer, and it may reveal uncomfortable truths. Perhaps you simply think of yourself as stubborn and even regard that stubbornness as a virtue; in reality, that obstinacy is often another artifact of our culture of toxic capability.
When loved ones claim to be allies to disabled people, but then refuse basic care, medications, or even standard-issue help from other human beings, their actions say something they probably can’t articulate in words: Somewhere, deep inside, they, like so many others, view needing help as weakness and feeling or being seen as weak is loathsome. As long as they get to be the hero helping the disabled person, disability is acceptable—but no one person is always the hero and no one person always needs saving.
My former neighbor didn’t want to use a wheelchair because she thought it would make her look old, even though she was old. My mother refused to use a cane for a time, even though her body couldn’t do what it used to do. In trying to avoid their weakness, they slammed headlong into it.
My hope is that we can be more aware of our own actions and intentions and how they may be revealing our internalized ableism. That we will work to reject our culture of toxic capability. That we will learn to be less afraid of needing help, getting older, taking medicine, and using mobility aids. And that we will see it takes incredible strength to understand who we are, acknowledge what we need, and accept those things with grace.
ABOUT THE AUTHOR: Ashley Caveda
Ashley has pale skin and long brown hair. She is wearing a black top that is a bit off the shoulders. She is wearing pearled, dangling earrings. Her hands are folded in her lap. She is smiling broadly. There are closed-up trees in the background.
At the age of six, Ashley was in a car accident that left her paralyzed. As an adult, she often uses her writing to grapple with the different facets of disability, from the difficult to the hilarious.
Currently, she lives in Indianapolis and serves as the director of communications and events at a local church. She is also a freelance writer and independent contractor who loves assisting organizations with meaningful missions.
Ashley received an MFA in creative writing from The Ohio State University. Her work has appeared in Monkeybicycle, Superstition Review, The Southeast Review, and Ruminate Magazine.
