Hey Arielle I just watched your video here, and I just wanted to say that I am a student studying at the University of California, Irvine, studying to become a teacher along with some other students (you may see them pop up and make comments on your blog pretty soon hehe!), and we are looking at people with different needs . If you are alright with it, I was wondering if I could ask (and I hope you do not mind me asking) what, if anything, do you feel when people suggest you have a “disorder” or if that affects the way you perceive yourself versus say, using more “politically correct” language, as you said, in your video? As someone who also has lives with mental health issues, I was wondering how you feel with the word “disorder” in general versus say a more inclusive term, and how that affects your perception of the real you? If I did not make any sense, feel free to comment back, and be like, “What the heck did you just say?”. Thank you so much for your video post though! It is amazing to hear about your life in general, and you just seem like an incredibly ambitious and really cool person!
Hi Arielle! I am also from the UCI MAT program. Thank you for sharing your life with us and spreading awareness on albinism! The question I would like to ask is, how has albinism limited you in ways you did not anticipate?
That’s a difficult question to answer! I mean my vision has been the same for years so I don’t think about “the difficulties” that come living with albinism. I never consider living with albinism difficult because it’s my normal and something I will have for the rest of my life. The only way that things work for me is to work around my obsticles.!!I will say there are some days you feel a bit down because you literally will be exposed to the same comments daily. However I don’t like to waste a whole lot of time having a pity party. It’s not my style. ????
Hello Arielle,
I am yet another person from the UCI MAT program and had a few questions to ask you. I hope it is alright. First of all, I want to thank you for sharing your life story with the rest of us so we may learn about albinism. Second, I think it is amazing that you are studying French. I love France and its culture too, so it was great reading about your love for French culture! :)
Alright so here are my two questions:
1. What do you hope to achieve through this blog in the long term?
2. Do you think albinism is better understood now as opposed to before? Why?
Salut Shady et de rien !
What do I hope to achieve from this blog. Well I’m trying to do something I would consider difficult to achieve. I would like for others to be aware of my condition and there are so many people on this planet. I don’t think I will be able to reach my goal just through this blog alone… or in my lifetime. For your second question… this is a bit tricky for several reasons. I believe that there are more resources now because of advances in genetic testing and medicine… plus the Internet. However we also have popular culture making stereotypes about albinism that aren’t accurate. So I believe we have gone forward to educate parents of children with albinism, but there is still a lot of work that needs to be done in the general population. I hope this answers your questions!
Hello Aaron,
I’m pretty open, do not be afraid to ask me anything. This is why I have been blogging with PEARLS for years! I think I got your question. If not let me know. I never consider albinism as a disorder or disease because it’s just the way I am. I’m not a mutant because of it. I’m not less of a person. I just have to do things a bit differently compared to the rest of the world. This video is a.bit old and I’ll probably make a new one once I start grad school because my life has also changed a bit. I only suggest political correctness with albinism versus albino because there are several people with albinism who do not like the word “albino”. This has to do more width the negative connotation associated with it.
So that’s what I mean okay. I guess the same concept applies for many people. Some people are more comfortable with certain terminology versus others. Thank you for clarifying, it makes it much more easy to relate to your life.
It is so awesome how you have set goals for yourself and made that happen, I just wanna throw that out there. We are currently finishing our first quarter of school as we do our teacher credential program, and it is equally inspiring to see someone else along the ride with us :) I hope you do post again in the future a new video! That would be aweeesoommmeeee!
Since I move to Athens on the 6th and start classes on the 14th, I’ll have to make an update introduction! I’m definitely going to write a blog today This may take me some time since I have orientation 9AM-5PM the week before the semester starts. I’ve had some changes since 2015!
Arielle
August 12, 2017 at 5:29 pm
Hi Aaron,
I have posted some videos recently if you want to check them out. The topics are varied. I have written a much more detailed intro that is now at the top of this blog, however it is way to time consuming for me to make an intro video. I have to make sure that I can keep track of my course load and assistantship as well as try to keep this blog updated. I believe written posts will be a lot faster for me than a vlog (so expect a lot of reading).
Hey Arielle I just watched your video here, and I just wanted to say that I am a student studying at the University of California, Irvine, studying to become a teacher along with some other students (you may see them pop up and make comments on your blog pretty soon hehe!), and we are looking at people with different needs . If you are alright with it, I was wondering if I could ask (and I hope you do not mind me asking) what, if anything, do you feel when people suggest you have a “disorder” or if that affects the way you perceive yourself versus say, using more “politically correct” language, as you said, in your video? As someone who also has lives with mental health issues, I was wondering how you feel with the word “disorder” in general versus say a more inclusive term, and how that affects your perception of the real you? If I did not make any sense, feel free to comment back, and be like, “What the heck did you just say?”. Thank you so much for your video post though! It is amazing to hear about your life in general, and you just seem like an incredibly ambitious and really cool person!
All the best,
Aaron
Hi Arielle! I am also from the UCI MAT program. Thank you for sharing your life with us and spreading awareness on albinism! The question I would like to ask is, how has albinism limited you in ways you did not anticipate?
Best,
Maggie
That’s a difficult question to answer! I mean my vision has been the same for years so I don’t think about “the difficulties” that come living with albinism. I never consider living with albinism difficult because it’s my normal and something I will have for the rest of my life. The only way that things work for me is to work around my obsticles.!!I will say there are some days you feel a bit down because you literally will be exposed to the same comments daily. However I don’t like to waste a whole lot of time having a pity party. It’s not my style. ????
Hello Arielle,
I am yet another person from the UCI MAT program and had a few questions to ask you. I hope it is alright. First of all, I want to thank you for sharing your life story with the rest of us so we may learn about albinism. Second, I think it is amazing that you are studying French. I love France and its culture too, so it was great reading about your love for French culture! :)
Alright so here are my two questions:
1. What do you hope to achieve through this blog in the long term?
2. Do you think albinism is better understood now as opposed to before? Why?
Merci beaucoup!
Shady
Salut Shady et de rien !
What do I hope to achieve from this blog. Well I’m trying to do something I would consider difficult to achieve. I would like for others to be aware of my condition and there are so many people on this planet. I don’t think I will be able to reach my goal just through this blog alone… or in my lifetime. For your second question… this is a bit tricky for several reasons. I believe that there are more resources now because of advances in genetic testing and medicine… plus the Internet. However we also have popular culture making stereotypes about albinism that aren’t accurate. So I believe we have gone forward to educate parents of children with albinism, but there is still a lot of work that needs to be done in the general population. I hope this answers your questions!
Hello Aaron,
I’m pretty open, do not be afraid to ask me anything. This is why I have been blogging with PEARLS for years! I think I got your question. If not let me know. I never consider albinism as a disorder or disease because it’s just the way I am. I’m not a mutant because of it. I’m not less of a person. I just have to do things a bit differently compared to the rest of the world. This video is a.bit old and I’ll probably make a new one once I start grad school because my life has also changed a bit. I only suggest political correctness with albinism versus albino because there are several people with albinism who do not like the word “albino”. This has to do more width the negative connotation associated with it.
So that’s what I mean okay. I guess the same concept applies for many people. Some people are more comfortable with certain terminology versus others. Thank you for clarifying, it makes it much more easy to relate to your life.
It is so awesome how you have set goals for yourself and made that happen, I just wanna throw that out there. We are currently finishing our first quarter of school as we do our teacher credential program, and it is equally inspiring to see someone else along the ride with us :) I hope you do post again in the future a new video! That would be aweeesoommmeeee!
Since I move to Athens on the 6th and start classes on the 14th, I’ll have to make an update introduction! I’m definitely going to write a blog today This may take me some time since I have orientation 9AM-5PM the week before the semester starts. I’ve had some changes since 2015!
Hi Aaron,
I have posted some videos recently if you want to check them out. The topics are varied. I have written a much more detailed intro that is now at the top of this blog, however it is way to time consuming for me to make an intro video. I have to make sure that I can keep track of my course load and assistantship as well as try to keep this blog updated. I believe written posts will be a lot faster for me than a vlog (so expect a lot of reading).