Image Description: digital drawing of a cartoonish person standing in a grey and plain landscape, looking up at the viewer with a hand extended forward, offering a hand shake. The person is wearing a polo shirt and long pants along with a mask showing a smiling face, all the same color as the background. The person is vibrant blue, their arms, hair, and exhausted eyes visible.
“Masking Pains” is about the difficulty in trying to get employment and housing when you’re forced to hide your symptoms as best you can in interviewing processes.
ABOUT THE AUTHOR: G. Rice
I’m 23 years old and have been drawing digitally for around a decade now. I started drawing regularly after discovering anime at 12 but my current art and writing is more inspired by the humour and surrealism of the 90s and 00s cartoons I grew up on. I’m a very big fan of horror in multiple mediums (games, art, writing, movies, etc.) and am part of goth, punk, and metal head subcultures which have influenced the style and content of my art.
A person standing before hurdles.Lee Goldberg’s Structural Ableism Essay Audio [transcript below]
I have several non-apparent disabilities which makes me more apt to experience Systemic Ableism because when people don’t see my disabilities they assume that I can do whatever society wants or what other non-disabled people in society can do. It is like judging the book by its cover only the cover looks normal when it isn’t.
The definition of Systemic Ableism is also known as institutional ableism which includes the physical barriers, policies, laws, regulations, and practices that exclude people with disabilities from full participation and equal opportunity.
I can give you examples that I have personally experienced and still currently experiencing of Systemic Ableism from the policies and regulations, the exclusionary practices, and the physical barriers angle.
The physical barriers that I am currently dealing with involves the use of facemasks by other people during the pandemic. Their facemasks prevent me from being able to understand what someone else is trying to say to me. I depend on lip reading as I am deaf. No one is willing to lower their facemasks just below their chin for the few seconds that it takes them to say a few sentences nor are the healthcare organizations are willing to provide their staff who deal with the public with clear facemasks.
My primary care doctor’s office is one of the worst offenders, and they are part of the Mass General Brigham medical organization in Boston. I stay with them because I have a really awesome primary care doctor and I would be dealing with this issue no matter where I go. I can’t tell you how rude people are when I carry around my deaf sign that says, “I’m deaf please remove your facemask so I can lip read, Thank You.” People come from around the world to get medical care at the Mass General Brigham. Their IT dept will not allow their own health care providers to have the ability to toggle their work Zoom accounts that they use for telemedicine visits which allows them to enable the closed captioning option. The healthcare providers have to go through the process of booking a CART (Communication Access Realtime Translation Services) person when there is already a shortage of CART people.
If their IT dept would allow their medical providers the option of enabling the zoom closed captioning, this would eliminate the extra time and effort of getting a CART person. I emailed each of my healthcare providers that I see on Zoom with a Zoom closed captioning cheat sheet on how to enable the Zoom closed caption option. The answer I get from each of them is that the Mass General Brigham IT dept doesn’t allow them to toggle their work Zoom accounts. This is an example of a barrier and a policy version of systemic ableism that is happening now by a world class healthcare organization.
Another systemic ableism is a deaf issue I currently experience is the inability to move the closed captioning placement on my own TV screen when I am watching a TV show. I know that I am not alone about this issue because I have read the comments written online by other deaf people who are frustrated with the same thing. I want the ability to be able to move the placement of the captioning to any part of my TV screen. Currently, only the TV stations can decide on the closed captioning placement on all TV screens and some of them put it in the middle of the TV screen which blocks out the show that I’m trying to watch. It’s very annoying.
Another Systemic Ableism issue that really gets me upset is that the SSA (Social Security Administration) has a system of policies and regulations and continues their discriminatory practices within their SSDI (Social Security Disability Insurance) program to this current day. This discrimination practices discriminates between the blind and all of the rest of the disabilities in terms how much the 2 disability groups can earn per month before losing their monthly SSDI income.
For many decades and still to this day, blind people can earn an extra $990+ per month when all of rest of the disabilities cannot before they lose their monthly SSDI income. This is called SGA also known as substantial gainful activity. I have asked benefits trainers, policy makers and advocates how come this SGA discrimination still exists to this day. The answer I get is because blind people had a really good lobby and they got congress in the 1970’s and early 1980’s to write and pass legal and regulatory policies allowing this to happen.
This SGA discrimination is another example of the legal, regulatory and policy aspect of Systemic Ableism all combined within one action. This is a major reason why most nonblind people including myself who collect SSDI disability are condemned to a life of poverty and get penalized for trying to do part time work. I can’t work more than 20 hours per week due to my various non apparent disabilities. I have the skill sets that puts me above the current nonblind SSDI SGA level.
Finally, another federal program that is administered by the Federal government in partnership with the states is Medicaid. Most people who have disabilities have Medicaid only because they don’t have the required employment quarters to be eligible for SSDI and Medicare. Medicaid is ripe with Systemic Ableism built into the structure of its program and the way it is administered. It limits where one can go, what type of healthcare they can get and the lack of access to health care due to its extremely low reimbursement rates to healthcare providers.
People with disabilities have trouble accessing specialized care related to their type of disability such as Mental Health or specialized care that is related to their physical disability such as Cerebral Palsy, etc. because the doctors or hospitals will not accept the extremely low Medicaid reimbursements rates. Doing the unpaid extra time and administrative work that many people on Medicaid needs, is not reimbursable by Medicaid. It takes extra time to see and care for a person with a disability.
People with disabilities are often limited to going to the lesser quality hospitals and doctors because of the Systemic Ableism that is built into the Medicaid program. This causes people with disabilities to get lesser quality and standard of physical medical and mental health care. This difference in the quality and access to care makes it extremely hard for people with disabilities to live their public and private lives and to participate in society. This impacts all the major diseases categories across the board for people with disabilities who have Medicaid only whether its cancer or diabetes etc.
I hope my presentation gives you some insight into what Systemic Ableism is and how it permeates throughout society and how its entrenched in our daily lives most people don’t even realize it. This is parallel to what the black people in our country are saying about systemic and institutional racial discrimination.
I am a staunch advocate for the mental health peer movement. I have been involved since the early 1990’s. I started out my advocacy days working with Pat Deegan helping bring mental health advocacy into an independent living program. Pat provided me with the foundational knowledge about mental health and introduced me to the early days of the peer advocacy movement. From there, I worked in mental health in different direct care roles ranging from employment services to outreach supported services as a Peer Specialist. I have worked in direct mental health care for 30 years while serving on many statewide committees advocating for changes in the way mental health services are provided in Massachusetts.
Since the pandemic I have left direct care and will be training as a Behavioral Health medical coder. I plan on advocating for certified peer specialists to have their own behavioral health codes so they can bill both the public and employer-based insurance. Currently in some states peer services can bill Medicaid but not in all, they also can’t bill Medicare or employer-based insurance which is why there are no peer services currently for people who have those insurances.
I live in an apartment adjacent to the city of Boston with my orange cat Linus. Linus is 9 years old, and he is the love of my life. I enjoy going to local festivals and having quiet dinners with my friends.
“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.
The runt of some impoverished litter how dared I not survive? Otherwise, what does it say about society when we do not save the least of these?
My existence depends on your benevolence you pay me in tax from the scraps you render Caesar I’m no believer.
Remove your black boot from my neck, I don’t need your rations, fascist. I won’t be stranded by your standards of intelligence or physique.
Ableism likes its women blade thin starved till we’re dizzy bled out and white like glutted milk for children it deems we dare not feed until we fit.
Ableism lets me breathe provided I am blank and grateful as a grave made from milestones that pulverized my C-curved spine. This able life is a lie cleansed by the Savior who did not die. I’m saved by His grace. I don’t have to try, victory’s within me.
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About the Author: Stacye Robinson
Stacye Robinson received a Master of Arts degree from Ball State University in 2013. She now lives in Indianapolis with her husband Ryne and Robinson.
