Wednesday 23 March 2016

Journey to NOAHCon2016 and Why I'm Going to An Albinism Conference

Photo credit: www.albinism.org

Why do I want to go to NOAHCon?

The National Organisation for Albinism and Hyper-pigmentation has been taking on the task of educating the masses and equipping the interested for many years. They have a branch in the UK, Australia and the United States. This year, I endeavour to go to my first conference. I'm not an American but I am a person who lives with the genetic condition known as albinism. This classes me into a group of people who live with low vision and a very high risk of skin cancer due to lack of pigment creation in the eyes, hair and skin.

By attending this conference, I hope to learn:
  • To better equip myself and my country, to answer the questions and provide the aid necessary for persons like myself, to lead a regular and healthy life that allows them to contribute to society at their maximum potential in a real and beneficial way. 
  • I want to gather more information that will help me break the myths and dispel the stigma, discrimination and street harassment potent in my society surrounding albinism and visual impairment.
  • I want to have new experiences with successful people with the condition so that I can continue to inspire confidence and assertion in those who live with the genetic condition and inspire them to believe that their in more to life than their disability, they do not need to be shut ins, they are valuable members of society. 
  • What are the latest visual aids, legislation and best practices that might allow me or persons with visual impairments to earn a driver’s license and improve their standard of living? 
  • What strategies can I employ as a teacher to maximize my students learning experience in the classroom? 
  • What extra steps do I/my students with albinism need to take to protect the skin from the harmful rays of the sun?  (cancer rates are high amongst people with albinism.) This is of vital importance to us in the Caribbean.
  • What strategies can I/my students employ to minimize the effect my low vision has in a work environment? 
  • How do others cope with the social and emotional issues accompanying with albinism and how can my students use these methods in their own life?

The other day someone asked me if I feel different from everyone else. No, I don't. I feel as different as we all are to each other. I am made to feel so by those who walk the same streets as I and think they have the right to yell things at me. Do I live with it? Yes, Should I have to? No. Many believe that we can no longer change the world, that it is doomed and there is no way to improve it.

Maybe the world is doomed but news flash, it's getting their a lot faster if we sit and do nothing and if you know me well, you know I've never been comfortable with doing nothing.

My journey to know is me doing something about it.

As an educator myself you must know that I believe strongly in the power of education. It is a tool that, if used correctly, can change lives simply by empowering people with the knowledge of choice.

I've been preping for this for a long long time. Will I succeed? Who knows but God! I've been believing and working towards it. It's a lot of money and I'm starting to feel a little daunted if I'm honest... I decided to put pen to paper, or rather, cursor to word document and really talk about this venture because,I'm going, eventually, I'm going. This trip is not up for debate because it's more than me. It's an investment in the future.

Here is a list of all of the NOAH Conference locations in the past. I've chosen to try really hard to go to this one because it is closest to New York city which is finally close enough for me to get to financially.

I intend to document my entire trip as well as hold some informative workshops upon my return but to do that I must get there. I've already saved half of what I need to go. If you are interested in making a contribution to my Journey to NOAHCON2016 feel free to email me via shemustbenew@gmail.com

NOAH Conference History:
1st—1985—Minneapolis, Minnesota
2nd—1986—San Jose, California
3rd—1987—Hartford, Connecticut
4th—1990—Anaheim, California
5th—1992—Chicago, Illinois
6th—1994—Philadelphia, Pennsylvania
7th—1998—Schaumburg, Illinois
8th—2000—Boston, Massachusetts
9th—2002—Concord (San Francisco), California—The Albinism Community Coming Together
10th—2004—Atlanta, Georgia—Sharing our Lives Celebrating Our Future
11th—2006—Minneapolis, Minnesota—Standing on the Shoulders of Giants
12th—2008—Las Vegas, Nevada—Imagine Your Luck
13th—2010—Arlington, Virginia (Washington D.C.)—Uniting the Albinism Community
14th—2012—St. Louis, Missouri—Blazing the Trail
15th—2014—San Diego, California—Live Like a Champion

16th—2016—Pittsburgh, Pennsylvania---Building Bridges



More to come soon.

3 comments

  1. Wow. Your commitment is inspiring. Love it. Love this attitude. Go girl.

    Will be really interested in knowing more about it and hearing about your experiences.

    (Love your blog redesign).

    Go, Lady, go!!!!!!!

    (FINALLY figured out what the problem was and can *finally* leave you comments...)

    Helen xxxx

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  2. I can't wait to share it all! Also YAY!!!! Glad to have you back :D

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  3. As one of your biggest fans I am thrilled that you are pursuing this! You are so beautiful it is time for people to know! Signed, your friend, Susan Mains

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