Accessing Disability Culture
Accessing Disability Culture is a reflection of experience, resistance to ableism, and documentation of disabled/neurodivergent/chronically ill/Deaf students at the University of Michigan. The idea for the project evolved over several years, but first sprouted during the Summer of 2022, when I was being mentored by Dr. Remi Yergeau through the Women and Gender Summer Fellowship Program. As a part of my project, I read Loud Hands: Autistic People Speaking, and was enamored as a young neurodivergent student, to see how artfully the “voice” of autistic identity was reclaimed and wielded by the authors of this work. Who better to tell our stories than ourselves? Just before this book, I had read Asperger’s Children, and continued diving into autistic history, consequently mourning the generations of medical abuse, social death, and erasure of autistic and other disabled kin ancestors. How, I began to wonder, are ableist structures within academic institutions, or any other institution, to change, when dominant narratives on disability are not dictated by the people they affect the most? My hope is that Accessing Disability Culture is a way of translating our realities as disabled students into the understanding of not only allies looking to contribute to the advancement of disability equity, but also to other disabled students searching for a disability cultural anchor at University of Michigan.
You will notice an array of positionalities, identities, and opinions in this anthology, which reflects the diverse nature of the disability community. Additionally, you will distinguish the variety of mediums - photography, installation, essay, poetry, digital design, and more. A prerequisite to inclusion in this collection was accessibility and freedom of diverse expression in the submission. Throughout each step of the process, accessibility experts in the Digital Accessible Futures lab worked alongside contributors to make pieces accessible. Additionally, in our call for submissions, we specifically focused on keeping prompts relatively open, noting our values for intersectional experiences and accessibility, but trusting in the direction of individual creators. As a result, the themes are nuanced and intertwined, depicting disabled embodiment and life, grappling with inaccessibility of the University as disabled students subjected to academic ableism, and asserting crip wisdom, joy, interdependency, and overall - disability culture. In Accessing Disability Culture, we control our own narratives. Disabled students of the University of Michigan celebrate community, acknowledge the distance between our current experiences and disability justice, and dream of an accessible future.
Sincerely,
Tess Carichner, lead editor of Accessing Disability Culture
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Home → Eye Health → Retinitis Pigmentosa → FAQ
Medically reviewed on: September 12, 2000
Last updated on: March 20, 2024
Retinitis Pigmentosa FAQ
Q: What is Retinitis Pigmentosa?
A: Retinitis Pigmentosa (RP) is a rare, genetic degenerative eye disease. RP affects the retina, the light-sensitive layer of tissue found within the back of the eye– the vital mechanism allowing images to be sent to your brain. The disease causes the cells in the retina to break down slowly over time, causing vision loss. While varying between individuals, symptoms include decreased vision at night or in low light, blurred vision, sensitivity to bright light, and loss of colored vision.
Q: Who gets Retinitis Pigmentosa?
A: Your mother. Probably not your sisters. Maybe your future daughter.
Q: How can I catch Retinitis Pigmentosa?
A: Retinitis Pigmentosa is not contagious. You cannot “catch” Retinitis Pigmentosa. However, as your mother’s vision becomes worse, you will probably experience many of the same symptoms as she does, specifically: burnout, loss of appetite, fatigue, loneliness, and
depression.
Q: What are the symptoms of Retinitis Pigmentosa?
A: Initial symptoms include loss of night vision and gradual blind spots, both of which may be apparent in childhood. Later, the individual may experience complete blurriness of vision, clinical depression, fits of anger, the inability to drive, difficulty in social situations, increased anxiety, unemployment, trouble helping you with your math homework, and loss of ability to see her children’s beautiful faces.
Q: What causes Retinitis Pigmentosa?
A: Little is still known about Retinitis Pigmentosa. Doctors explain that the disease is caused by genetic mutations passed down from parent to child. In some cases, it can even occur sporadically. The cause of RP is especially difficult to specify as single mutations in over 60 different genes can trigger the disease. In your case, there’s a 25-50% chance for it to be passed along to you. This makes you wonder if Retinitis Pigmentosa will develop in your eyes someday.
Q: What can I expect after the diagnosis?
A: It depends. At first, things stay relatively the same. A little bit of extra help around the house is all she needs. You know that your mother is vision-impaired early in your childhood but it doesn’t completely register until she begins using a magnifying glass to read, increasing in power each year. “Your mother hasn’t completely lost her vision yet!” she exclaims. She still cooks the rice porridge she knows you and your siblings love. She still works all day on her feet at your aunt's restaurant, sweating and providing. She still pays the bills on time, even when the text becomes blurrier and blurrier. As you grow older, you and your siblings begin to understand the extent of your mother’s situation; quick on your feet to grab her a cup of tea or guide her to her favorite chair.
Q: Can Retinitis Pigmentosa be treated?
A: There is no treatment for Retinitis Pigmentosa. Some operations and medications can slow the progression of the disease but it’s inevitable. It makes you appreciate what your mother has done and continues to do for you. You begin to cry as you type this essay.
Q: Is there hope for a cure?
A: Always… in your heart at least. You hope that maybe one day her vision will spontaneously restore itself. You hope with each eye exam and new pair of glasses, somehow it will improve. You hope the prescribed eye drops will wash away her blurred vision like soap. But with today’s medicine, it’ll never come. Your mother has accepted this fact over many years but she does not feel guilty. Her cure lies within her children– finding purpose in their laughter and well-being. As you watch your mother find her way softly around the house, each step with investigation and purpose, you hope you can be half as strong as her when you grow up.
Q: What supports are in place for patients with Retinitis Pigmentosa?
A: Your grandma. Your aunt. You. Your siblings. All of the kind people who attend the church next to your house. We wouldn’t have made it this far without them. When you were younger, you couldn’t understand her situation. When your mother needed help, your grandma was always there. Then, as you grow up, something clicks. It clicks as your older brother becomes the man of the house. It clicks as that role is eventually passed on to you. The responsibilities fall directly into your hands. You get jobs as soon as legally possible– lessening the load on your mother. You learn to mature quickly, learn how to do things by yourself. You take school more seriously, striving towards every opportunity and scholarship you can get your hands on. When you get your driver’s license at age sixteen, you take on more. Your 1999 Honda Accord racking up miles as you become the family’s designated driver. When your mother’s field of vision becomes gradually less and less, you learn how to cook for yourself– making rice porridge like your mother used to, but never quite finding that exact taste like hers. Now, the responsibilities are handed down like an heirloom as your younger siblings come of age, and as you go to college.
Q: Will there be regrets as someone develops Retinitis Pigmentosa?
A: Yes, too many to count. You will regret all of the times you cried like a spoiled brat when you wanted a new toy. You will regret all of the times it worked. You will regret not doing your chores, and will regret it even more when seeing your mother do them after a long day at work. You will regret being a bad child and you will regret all of the headaches you’ve caused because of it. You will regret fighting with your siblings. You will regret all of the times you asked for expensive shoes, clothes, and electronics. You will regret ever complaining about it. You will regret raising your voice and feelings of frustration towards her. You will regret all of the times you forgot to take it back. You will regret missed opportunities and you will regret the time spent slacking off in school. You will regret the fact that she will never experience the same world as you, and you will regret ever taking her eyesight for granted.
Q: Will my mother go completely blind?
A: God, you hope not.
About the Author
Hi, My name is Brandon Vang (he/him), I am a 4th year here at UM studying Earth and Environmental Sciences. I am from Traverse City, Michigan and am interested in the fields of Ecology and Oceanography research amongst other things such as the Arts! I hope you enjoy my work!
Image description: Brandon is a young Asian man with short black hair. He is wearing glasses and a black sweater. He holds a rested face with focused eyes at the camera, behind a white backdrop.