Perception vs. Ability: How Low Vision with Albinism Can Limit the Quality of a Person’s Life.

Perception vs ability with Low Vision. Ms Rae Lowery and adobe software used for Cre8tive Media

According to the World Health Organization (WHO), factors in a person’s environment that, through their absence or presence, limit functioning and create disability. While albinism alone may not be a disability, “low vision” with albinism is a physical disability.

Before I begin, I am glad to give mention to Mr. Dale Hamilton and his co-hosts & guest on a recent episode of Life with Albinism, (video podcast on YouTube) It sparked further observation of the limitations associated with having albinism. The title of the episode is called: “Does Albinism Interfere with Your Hobbies”. Please check it out and let me know what you think?

https://www.cdc.gov/ncbddd/disabilityandhealth/disability-barriers.html

https://en.wikipedia.org/wiki/Twins_(The_Matrix)#:~:text=The%20Twins%20(played%20by%20identical,2003%20film%20The%20Matrix%20Reloaded.

The show touched on an important observation, that there are no persons with albinism playing professional sports. Yes, goal ball is a sport but it’s a Paralympic event. Also, through discussion they demonstrated how difficult it was to even name one professional actor. Often, we are portrayed only as villains in movies or discussed for amusement by comedians in the entertainment world. Professionally competing at most events or in work spaces, requires the ability to have quick reflexes and easy adaptability.

Having low vision and being visually impaired severely impedes, this necessity. Also without saying certain aesthetics are necessary for filming and driving interest in the entertainment world. Its also why some producers would rather create a likeness of a person with albinism, rather that use a real person. Barriers created by stereotype and stigma, simply remove many opportunities for those interested in competing professionally in the entertainment industry.

Matrix Twins Do Not Have Albinism

Are there professional actors, with albinism “Starring” in major motion pictures?

Actual performance and the ability to compete are real when we are speaking of professional sports. High school and college present great opportunities to compete because there are only a few exceptional talents there. The greats move on to the big leagues. However, in professional sports we here about a handful of exceptional talent that manage to standout, but truth is all the athletes selected were the best of the best where they came from.  So if you are following this train of thought  and still believe that low vision with albinism isn’t a disadvantage, tell me why in the comments?

In my opinion there is a big difference in the capability of doing something and being able to do it, well enough to compete professionally. The world is simply NOT limited to the few persons with albinism we know or see online but includes everyone. We must set higher expectations on real accomplishments that matter to determine, not just how we perform, but the ability to perform better than other competitors.  It seems the perception of saying you “can’t” suggest weakness or deficit in an individual, which is not true.  

Not being interested in trying something is a personal choice. Personally, I do not say” I can’t”, unless I have tried to do an activity, which did not go well. Having an interest in a thing, activity, job, hobby etc. may drive a person to adapt to measures which allow them to do something, but whether the adaptation is efficient… matters. Efficient adaptations allow you to become an asset and also increase you value, based on quality production. In many circumstances doing something well and faster than others, is the determining factor.

Personal life events are wonderful to us individually.

To me getting a job, creating a home, raising children, completing college and driving are basic things that people around the world do in the pursuit of success. These things are not considered to be a success. Limited vision may slow down or change the way you do these things but does NOT always prevent persons low vision from doing them. The true gifts are not simply the talents themselves but how you use the talent to change the world. While this may be a courageously unpopular opinion, 99% of people in the world “DO NOT EFFECT CHANGE’ on a mass level but can in small circles which are comparable to even smaller circles. I say this because the world’s wealthiest 1% controls effect change in the world, daily.

Normal Life Events

1% of the world’s population control’s, what happens to the other 99%

From entertainment to government to politics to media an beyond, its not questionable that people who “own” these things, control what is presented to the world. Ownership and creation of something of extreme value grants the power of control. Technology and advances it brings to our lives, dominates the majority of new wealth created in excess (Uber, Uber Eats, Facebook, Apple Products etc.) . Do you know any persons with albinism who have written code or software, that the world can live without?

Could low vision with albinism, stop a person with an interest in computers, from being the first to build the next supercomputer or gadget that changes the world? The answer is yes… because it simply has NOT happened, yet. To me these are outside the norm and truly require strategy and reflexes to really be superior to anything that already exists. Being able to see clearly, helps us comprehend things faster. It seems that low vision with albinism, nearly halts “ALL” progress when it comes to the big leagues.

Think bigger than being a player!

You can change the world by helping others become great. That is an exceptional, talent!

Think Bigger !

I’m not saying smaller local, regional and national… projects are not worth the effort. I believe helping one person at a time is effective and if you can positively effect change with one person, that indeed is a major accomplishment. We must start in our own backyard to before with can get anywhere else. Do not forget many of the greats acquire talent to help them change the world. So, when you think about it being able to connect and creating incentives for people to join your team, may be a testament of how to truly reduce the limitation of low vision.

Why play football when you can own an NFL team? Being able to read a teleprompter or small print on scripts, may slow down your ability to be a news anchor or actor, but not owning a television station or movie production company. If you want to see more movies include persons with albinism, we just may have to create them ourselves. We don’t wait on inclusion we must create it, to experience the progress! Be the change you want to see.

When I was younger, I loved to draw. It was not exceptional drawing; however, my mother and father did not discourage us from being creative. We even covered our bedroom walls in our signature art to the point it looked like wallpaper. Whereas family members and friends saw this as destructive my mother saw it as “positive” self-expression. While this occurred during non-school age to maybe kindergarten, later we had markers, crayons and paper to make independent drawings at home. Going to school and being in a structured environment increased an interest in art for me. My things were art and science.

Would have loved to have a chemistry set as a child! I have taken one art class in elementary school and the art teacher, felt my aptitude to develop that was noticeable. She talked to my mom about me staying after school to work with her and providing transportation home. As with many inner-city school’s budget cuts took away money to continue art for anyone so, I never got to work with a person skilled in art at that time.

Self employment and low vision with albinism

Ms Rae Lowery CEO of Cre8tive Media Design Firm

As adult my mom believed that true artist only rose to value in death. As this was my passion, I looked for other career paths that interested me, like psychology, accounting and science. The reality is that these things require a certain amount of accuracy that low vision just cannot guarantee. I continued to self-teach and absorb whatever I could with art as the computer age began to advance. With an introduction to graphic design I found my passion. My mom was able to see my tenacity in this area and that the way I adapted was efficient.

I knew as a teenager to level the playing feel I would have to control the environment I worked in. Self-employment was where I set my goals. My ability to articulate this to friends and family allowed them to build trust in me and receive the effort I invested, as a credit to my character. I was able to earn a living by developing my skills and self-employment would allow me to work at my own pace because additional time was required to reduce the impact low vision with albinism, had on my ability to professionally compete as a graphic designer.

Celebrate the beauty of Albinism by sharing your experience.

The work I produced is what helped me build my business into a commercial practice, outside my home. The quality of work exceeded the fact that I am visually impaired. I am satisfied with setting a goal by creating a business plan and returning to college to earn a degree in graphic design. This investment made me professionally competitive with other micro-businesses and showed that I could excel even with low vision. It changed my world and expanded the possibilities of clients to work with. Things went from Georgia to many states around the United States.

Yes, I marketed my business online, but word of mouth was the most lucrative creation of new business for me. In addition, the work I am doing by creating and managing The Albinism Alliance Group, (TAAG) has given me the ability to connect with people internationally. As I continue to develop the platform it could be used and recognized globally. All great things start small, but you have get started in order to finish. I am 20 years in and can not wait to see where I land, in 20 more!

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