Blindness is Confusing.

Albinism is an inherited genetic condition that reduces the amount of melanin pigment found in the hair, skin, and eyes. There are several genetic variations that can cause albinism. Some types only impact the eyes while others also affect skin and hair. Most types of albinism are recessive traits, which means that most of us inherited albinism from both of our parents who typically have normal pigmentation. In the US, approximately one in 18,000 to 20,000 people have albinism. Due to the abnormal development of our retinas, people with albinism have varying levels of visual impairments. Some of us are legally blind while others have enough residual vision to drive with the assistance of a bioptic. Many of us also have nystagmus, involuntary rapid eye movement, and strabismus, a muscle imbalance that causes “lazy eye.” Keep in mind that everyone in the albinism community has different visual acuities and mobility aid preferences. With our extremely pale complexions, we must use sunblock, hats, and sunglasses to protect our skin from sun damage (If you get a sunburn, Mama Nissley will personally lecture you about the dangers of skin cancer). We also have severe light sensitivity, so you will probably find us wearing thick sunglasses and standing in the shade on a bright summer afternoon. I honestly find the science behind albinism rather boring, but if you’re interested, check out the National Organization for Albinism and Hypopigmentation’s (NOAH) information bulletin.

A person is considered legally blind if they have a visual acuity of 20/200 or lower out of their best-seeing eye while wearing corrective lenses or contacts. People with a visual field less than or equal to 20 degrees, meaning that they see objects straight in front of them but have no peripheral vision, are also legally blind. Legal blindness is a vast spectrum where some only have light and shadow perception while others have enough residual vision to read print. Approximately 85 percent of people who are legally blind have some form of remaining vision and very few of us are completely “in the dark.”

This is a tricky one to answer! I often describe my eyesight as the equivalent of a greasy iPhone camera, but since I’ve had the same vision my whole life, I don’t actively “perceive” my surroundings as blurry. My visual acuity is 20/400, which means that I can see objects 20 feet away that a person with 20/20 vision would be able to see 400 feet away. Relative to other people I’ve met with albinism, my distance vision is definitely on the lower end, but my eyesight up close is surprisingly good (Yes, let me brag about being able to read a check). Here are some photos to help you get a sense of what my world looks like:

Nystagmus! People with albinism often experience rapid involuntary eye movement that can be horizontal, vertical, or rotary - they pretty much move in whatever wonky direction they like! I don’t notice my nystagmus unless I am extremely tired.

Several forms of low vision cannot be corrected with glasses or contacts. Prescription lenses only marginally improve my vision and they often give me headaches. I still can’t see street signs, whiteboards, or traffic signs, so I don’t find it useful to wear them daily. At this point, I only wear my glasses when I am decorating my Christmas tree.

A common myth is that the eye color of people with albinism must be red, but most of us have blue, hazel, or even brown eyes. In certain light conditions, our blood vessels can give our eyes a reddish or violet tint, but sadly, most of our eyes are not as iconic as those of albino snakes!

Feel free to call me albino! I prefer identity-first language (albino, disabled, etc) because I consider my albinism as a part of who I am. I view disability as a characteristic, like race, gender, or sexual orientation, rather than something people “have.” Calling myself “albino” is a way to express pride in my appearance, unique perspective, and the wonderful community I have found. I am not a fan of person-first language (Ex. “Person with Albinism”) because I believe it minimizes, separates, and treats disability as inherently negative, though I sometimes use it in the podcast for the sake of variety or whenever referring to the albinism community as a whole. I believe “albino” should be a term of empowerment rather than an insult or a dirty word. However, several people in the community have a negative association with the word due to bullying and discrimination. The language surrounding disability is extremely important and ultimately how to identify is a personal choice. When in doubt, ask the person! But either way, please don’t shout across the room “look there’s an albino!”

I complete all of my schoolwork on my laptop and iPad. In fact, I have never printed a single sheet of paper throughout my entire college career! Apple products have pretty extensive built-in accessibility features, including color filters, Zoom (Window Zoom is superior to full-screen Zoom), and options to increase contrast as well as text size. I find that looking at screens creates significantly less eye strain than reading or writing on paper. I use the Dolphin Easyreader app and a Bookshare subscription to read novels on my iPad. Fortunately, most textbook publishers have ebook options, but you can also look on for free PDFs online (RIP Z-Library) or ask Bookshare to digitize a copy. I take notes using the Notability app with either my Apple Pencil, which I highly recommend for math classes, or my Magic Keyboard. If I need to scan a handout, I use the Adobe Scan app. To see the Smartboard and whiteboard, I use a monocular, but it can also be helpful to have the professor email you the PowerPoint slides. Here is one of my favorite monoculars on Amazon. I also am a huge advocate for the touch typing method, which allows me to type without looking at my keyboard and greatly increases my words per minute. Each finger has its own section of the keyboard and they learn the location of the keys through regular practice and muscle memory.

Through Orientation & Mobility (O&M) training, I have developed several skills, such as identifying traffic patterns, utilizing landmarks, and navigating with a white cane, that allow me to travel independently. Since I cannot see street lights, I use the traffic flows and the direction of cars to identify when I can safely cross a street. I typically use my white cane when I am traveling at night or in the rain (it’s a wonderful puddle detector!). To find the White House, a Starbucks, or any other place I want to go, I follow walking directions on Google Maps, which is my favorite platform because it displays an arrow rather than a dot to mark your location. I also use my iPhone or monocular when reading signs in a metro station or airport. With all these apps and skills in my toolbox, I can confidently navigate cities, airports, and unfamiliar environments! If you are in the DC metro area and are looking for a mobility instructor, I highly recommend Elisabeth Payne! She is such a knowledgeable and kind O&M instructor who will make your lessons very enjoyable! Contact your state’s Commission for the Blind, Lighthouse Guild, or division of the National Federation of the blind if you are searching for an instructor in your area.

Reach out as soon as possible! Every university will have a different policy, but emailing or visiting the website of your school’s disability office is a great place to start. Here are some documents you will want to gather as you are preparing to begin college: Copy of a 504 or IEP Accommodation Letter from the College Board (if you received accommodations for the SAT or AP exams) Functional Vision Assessment Letter from Primary Care doctor or Optometrist Letter from Vision Teacher or Case Manager Explaining Accommodations Here is a list of possible accommodations you can receive.

Currently, there is no cure for albinism, but even if there were treatments that could improve my sight or add more pigment to my skin, I would not be interested. Albinism is a part of who I am and I couldn’t imagine my life without it!

Albinism is an inherited genetic condition that reduces the amount of melanin pigment found in the hair, skin, and eyes. There are several genetic variations that can cause albinism. Some types only impact the eyes while others also affect skin and hair. Most types of albinism are recessive traits, which means that most of us inherited albinism from both of our parents who typically have normal pigmentation. In the US, approximately one in 18,000 to 20,000 people have albinism. Due to the abnormal development of our retinas, people with albinism have varying levels of visual impairments. Some of us are legally blind while others have enough residual vision to drive with the assistance of a bioptic. Many of us also have nystagmus, involuntary rapid eye movement, and strabismus, a muscle imbalance that causes “lazy eye.” Keep in mind that everyone in the albinism community has different visual acuities and mobility aid preferences. With our extremely pale complexions, we must use sunblock, hats, and sunglasses to protect our skin from sun damage (If you get a sunburn, Mama Nissley will personally lecture you about the dangers of skin cancer). We also have severe light sensitivity, so you will probably find us wearing thick sunglasses and standing in the shade on a bright summer afternoon. I honestly find the science behind albinism rather boring, but if you’re interested, check out the National Organization for Albinism and Hypopigmentation’s (NOAH) information bulletin.

A person is considered legally blind if they have a visual acuity of 20/200 or lower out of their best-seeing eye while wearing corrective lenses or contacts. People with a visual field less than or equal to 20 degrees, meaning that they see objects straight in front of them but have no peripheral vision, are also legally blind. Legal blindness is a vast spectrum where some only have light and shadow perception while others have enough residual vision to read print. Approximately 85 percent of people who are legally blind have some form of remaining vision and very few of us are completely “in the dark.”

This is a tricky one to answer! I often describe my eyesight as the equivalent of a greasy iPhone camera, but since I’ve had the same vision my whole life, I don’t actively “perceive” my surroundings as blurry. My visual acuity is 20/400, which means that I can see objects 20 feet away that a person with 20/20 vision would be able to see 400 feet away. Relative to other people I’ve met with albinism, my distance vision is definitely on the lower end, but my eyesight up close is surprisingly good (Yes, let me brag about being able to read a check). Here are some photos to help you get a sense of what my world looks like:

Nystagmus! People with albinism often experience rapid involuntary eye movement that can be horizontal, vertical, or rotary - they pretty much move in whatever wonky direction they like! I don’t notice my nystagmus unless I am extremely tired.

Several forms of low vision cannot be corrected with glasses or contacts. Prescription lenses only marginally improve my vision and they often give me headaches. I still can’t see street signs, whiteboards, or traffic signs, so I don’t find it useful to wear them daily. At this point, I only wear my glasses when I am decorating my Christmas tree.

A common myth is that the eye color of people with albinism must be red, but most of us have blue, hazel, or even brown eyes. In certain light conditions, our blood vessels can give our eyes a reddish or violet tint, but sadly, most of our eyes are not as iconic as those of albino snakes!

Feel free to call me albino! I prefer identity-first language (albino, disabled, etc) because I consider my albinism as a part of who I am. I view disability as a characteristic, like race, gender, or sexual orientation, rather than something people “have.” Calling myself “albino” is a way to express pride in my appearance, unique perspective, and the wonderful community I have found. I am not a fan of person-first language (Ex. “Person with Albinism”) because I believe it minimizes, separates, and treats disability as inherently negative, though I sometimes use it in the podcast for the sake of variety or whenever referring to the albinism community as a whole. I believe “albino” should be a term of empowerment rather than an insult or a dirty word. However, several people in the community have a negative association with the word due to bullying and discrimination. The language surrounding disability is extremely important and ultimately how to identify is a personal choice. When in doubt, ask the person! But either way, please don’t shout across the room “look there’s an albino!”

I complete all of my schoolwork on my laptop and iPad. In fact, I have never printed a single sheet of paper throughout my entire college career! Apple products have pretty extensive built-in accessibility features, including color filters, Zoom (Window Zoom is superior to full-screen Zoom), and options to increase contrast as well as text size. I find that looking at screens creates significantly less eye strain than reading or writing on paper. I use the Dolphin Easyreader app and a Bookshare subscription to read novels on my iPad. Fortunately, most textbook publishers have ebook options, but you can also look on for free PDFs online (RIP Z-Library) or ask Bookshare to digitize a copy. I take notes using the Notability app with either my Apple Pencil, which I highly recommend for math classes, or my Magic Keyboard. If I need to scan a handout, I use the Adobe Scan app. To see the Smartboard and whiteboard, I use a monocular, but it can also be helpful to have the professor email you the PowerPoint slides. Here is one of my favorite monoculars on Amazon. I also am a huge advocate for the touch typing method, which allows me to type without looking at my keyboard and greatly increases my words per minute. Each finger has its own section of the keyboard and they learn the location of the keys through regular practice and muscle memory.

Through Orientation & Mobility (O&M) training, I have developed several skills, such as identifying traffic patterns, utilizing landmarks, and navigating with a white cane, that allow me to travel independently. Since I cannot see street lights, I use the traffic flows and the direction of cars to identify when I can safely cross a street. I typically use my white cane when I am traveling at night or in the rain (it’s a wonderful puddle detector!). To find the White House, a Starbucks, or any other place I want to go, I follow walking directions on Google Maps, which is my favorite platform because it displays an arrow rather than a dot to mark your location. I also use my iPhone or monocular when reading signs in a metro station or airport. With all these apps and skills in my toolbox, I can confidently navigate cities, airports, and unfamiliar environments! If you are in the DC metro area and are looking for a mobility instructor, I highly recommend Elisabeth Payne! She is such a knowledgeable and kind O&M instructor who will make your lessons very enjoyable! Contact your state’s Commission for the Blind, Lighthouse Guild, or division of the National Federation of the blind if you are searching for an instructor in your area.

Reach out as soon as possible! Every university will have a different policy, but emailing or visiting the website of your school’s disability office is a great place to start. Here are some documents you will want to gather as you are preparing to begin college: Copy of a 504 or IEP Accommodation Letter from the College Board (if you received accommodations for the SAT or AP exams) Functional Vision Assessment Letter from Primary Care doctor or Optometrist Letter from Vision Teacher or Case Manager Explaining Accommodations Here is a list of possible accommodations you can receive.

Currently, there is no cure for albinism, but even if there were treatments that could improve my sight or add more pigment to my skin, I would not be interested. Albinism is a part of who I am and I couldn’t imagine my life without it!