Hello there! My name is Arielle and I live in Athens, Georgia. Currently, I am 23 years old and I am a graduate student/teaching assistant at the University of Georgia (UGA). This will be the first time living on my own so I am so ready to start my now adventure into adulthood (I guess). I will also be permanently living away from my fraternal twin sister (we do not look alike at all) for the first time in my life. So. a. lot. has. changed. Last spring, I graduated from Emory University with a BA in French Studies, and I love school so much that I am currently working on an MA in French Linguistics. I know French, but I’m not so familiar with linguistics. Luckily, I’ll be able to figure it out before my MA thesis! I hope to continue on to a PhD after I finish my masters (we will see what happens !). My dream job would be a college professor. I can’t really explain why I like it, but I just know that’s what I want to do with my life. I will be teaching elementary French (FREN 1001 & 1002 sequence) this fall and spring and I can’t wait to start this new adventure. We’ll see how I feel about teaching after this fall. ;) I have never taught a class before so this will be interesting. (Moi, je parle français et anglais. :) Vous pourriez m’écrire en français si vous voulez !).
I am a bit of a daredevil! I love activities such as swimming, whitewater rafting, and zip lining. I like group gym classes like spinning and pilates and I hope I can fit it in while in school. I also like binge-watching on Netflix and hanging out with my friends and family. I hope one day, that I will be able to be a certified scuba diver (when I have free time so I’ll keep dreaming…). I also like cooking, but my kitchen usually looks like a war zone after I finish. So I do that sparingly. I love playing with my pug puppy Beauregard, and the older pugs: Chuck and Pepe when I visit family in Atlanta. I have also started to bowl this summer. I think its really fun, but I am terrible at it. I guess I should practice more!
There is one thing that makes me stand out compared to a majority of my peers that attend UGA; I have oculocutaneous albinism (medical name for albinism or OCA works too). Albinism (the politically correct term compared to the colloquial term albino), is a genetic condition that causes lack of pigment in the hair, skin, and eyes (i.e. I look Scandinavian, but I am not actually a descendant from that part of the world). Also I have mentioned above that I have a fraternal twin sister. Although she is very pale, she does not have albinism. Just for clarification. Why do I have albinism and my sister does not?
I apologize in advance if my writing/drawing is illegible.
Simple Mendelian genetics and punnett squares. I won the genetic lottery. Albinism is a recessive trait, meaning it will not be expressed as frequently as dominant traits. In order for this recessive trait to be expressed, both parents must be carriers in order for albinism to be expressed. But it doesn’t stop there… when both parents are carriers the gene just doesn’t express itself all the time. Based on my drawing you will see why albinism doesn’t always occur so frequently. Actually it is rare and is usually found 1 in 17,000 people world wide. There is a 1/4 chance the offspring will not carrier for albinism (meaning the gene is not expressed and they cannot pass albinism down to their children), a 1/2 chance that the offspring is a carrier ( this just means one of the genes is affected and they can pass the gene along), and finally there is a 1/4 chance that albinism will be expressed (that is me!).
Usually albinism is the biology textbook model, because hypopigmentation (or lack of pigment) is a pretty noticeable trait. I am a natural platinum blond and I am very proud of it! I am debating if I should dye my hair a pastel color or a reverse ombré, since my hair takes dye very well. However, I like the bragging rights that come with my natural hair color. Although people may be familiar with lack of pigment associated with albinism, many people fail to realize that absence of pigment causes underdevelopment of the eyes. Pigment is used to develop the eyes prenatally, when you have little to no pigment it causes vision problems that are not going to be correctable with a pair of eye glasses.
Most people with albinism are visually impaired or legally blind. This does not mean we are blind per se. We can still see some things, but they aren’t as detailed… Legally blind does not mean that your acuity is 20/200 without your glasses off either. In order to be legally blind, one must have 20/200 in the best eye with its the best correction. I usually hate to be the bearer of bad news to those who say “Oh I’m legally blind without my glasses.”, but you are not legally blind by definition. This is a huge misconception that really complicates explaining degrees of visual impairment to the general population. In short, vision is not black and white by any means. I will repeat: there are existing vision problems in this world that are not going to be correctable with a pair of eye glasses. So consider vision as a spectrum and not as a on/off switch. It does not go flip from 20/20 vision (with or without glasses) to completely blind.
Vision acuity and function varies from person to person. So as a general rule of thumb, don’t assume all other people with albinism (or other visually impaired people) see like me, that will most likely not be the case. I hate to use this, but this snowflake analogy works very well here. There are never two snow flakes that are the same, right? Now taking that logic… There are never two people who are visually impaired that function the same. Therefore two people with the same diagnosis and visual acuity will not function exactly the same. This is absolutely apply to other forms of disabilities as well!
Vision does not always have to be related to numbers on the eye chart. Some people with albinism may have nystagmus (rapid uncontrollable eye movement), strabismus (lazy eye), or photophobia (light sensitivity), along with reduced visual acuity and lack of depth perception. I’m very lucky and have all of those listed above, but my nystagmus and strabismus are almost unnoticeable. As visual acuity decreases, lack of detail, and depth perception decreases as well. So no, I my vision is not blurry. For example, I can look at a stop sign and identify the colors and possibly the shape and letter, but I cannot read the word “stop”. Although my visual acuity is around 20/200, I think I am able to do as much (or even more) than my sighted peers.
In between working and school, I like volunteering especially for organizations that promote genetic diversity and albinism education and awareness. I’ve been a blogger for Positive Exposure’s PEARLS project since the pilot phase in 2011. So sorry for all the updated introductions, but I am way past the whole high school thing. I also do a lot of volunteer work for the National Organization for Albinism and Hypopigmentation (NOAH), which is an organization that I have been a member for since I was two years old. NOAH provides support and fellowship to People with albinism (PWAs) and their families. Usually there are conferences every two years and the next one will be in Kansas City 2018! If you want to find out more about the organization their website is albinism.org. You also have me as a resource as well since I am a frequent conference goer! (10 conferences and counting…). My volunteer work for NOAH varies. I usually work with high schoolers transitioning to college, but I occasionally write some articles for Albinism Insight (NOAH’s quarterly magazine), help Rick Guidotti promote the PEARLS project at conferences, sign up to be a group leader for the kids conferences or a camp counselor for the NOAH camp, and the list goes on and on. Outside of NOAH and Positive Exposure, I also have co-lectured on “ he communication of disability” specifically on albinism and popular culture in freshmen English classes as an undergrad with the help of my old English Professor. TBD if I will continue those this year…
I believe my blog is a safe haven to ask as many questions to your heart’s content!
Hope to hear from you all soon! -Arielle