Resilience with Purpose
NOWTHIS was very on point with the quality of the video produced to celebrate albinism awareness day, for a billboard in New York’s Time Square on June 13, 2019.
Content was directed at human rights which is the initial message for creating International Albinism Awareness Day. I support this.
The presenter touched on issues about bullying that may happen in other places around the world, but i believe i goes deeper than that. The American Slave trade where our African ancestors were brought to the US, to work against their will… adds a deeper layer to this problem.
Ignoring the harm done and anger resulting from this travesty is an epic fail and some of that negative energy gets directed at us, because we share the skin of those to blame. Simply living in the same environment, under the same conditions… isn’t creating equality. It makes us accessible for this type of abuse. This issue can not be dismissed. The skin of African Americans with Albinism, subcounsciously reminds our peers of their oppressors. Devaluing us and diminishing our livelihood may be seen as payback of sorts. It’s not fair, very harmful and in many cases unavoidable. Why is this NOT important to to creating awareness about albinism internationally? I want to shed light on this perspective in a solutions oriented way. This is the purpose of my article.
Celebrate the Beauty of Albinsim by Sharing Your Expereince.
Who's Asking for Permission?
I consider every opportunity I take to share my experience of living with albinism, to be a positive representation for persons with this condition in my community. I am a woman first and foremost, everything else is secondary to that. I do NOT need permission to exercise the confidence to live. I am still standing strong because I believe in me and who am as a person will always be valued above all else.
Having albinism can not make me a beautiful person and in retrospect I will not allow other people’s understanding of the condition, diminish who I am as a person. Living life with albinism, for me is dealing with low vision on top of all the other things, anyone else in this world has to deal with. Why does the color of my skin matter to members of my community and beyond? It’s the way of American culture.
Create Value for Yourself
Stigma with Albinism in the Black Community
I understand creating awareness about incidence of murders and mutilations that have occured over seas. Also catching and prosecuting poachers and those hiring them to commit these acts. However, has anyone ever been captured and brought to justice? Moreover, is there a solid plan on how to move forward on such a thing if ever such an arrest is made?
Being allowed to simply survive is NOT the only human right that people on this earth have. Simply existing is definitely NOT enough for me. A physical death is NOT the only atrocities being committed against persons with albinism. Bringing this issue and other traumas committed against persons with albinism need to have a place in IAAD forum as well. Addressing persons with albinism being targeted for physical harm of any kind, within minority communities around the world has to make it to the platform. It can not be dismissed so easily and in choosing to do so, you loose momentum for your original cause. Its like saying. if you are NOT being murdered and hunted for the purpose of, there are no real issues to address.
I Live My Truth & Speak My Truth, Whether It’s Liked or Not.
Things get tricky in the US because of issues in my opinion streaming from what it means to be a “Black” person in America. So, consider the idea that persons with albinism… who are indeed African American.. but not viewed as black. Additionally are daemonized tormented simply because we wear the same color skin, blonde hair (not texture) and blue eyes as those viewed as the reason for suffering in black communities. Some say its coloriscm but you would actually have to be perceived equally as a black person for that to be so. It’s truly a hatred returned based on this country’s history of racism imposed on many black Americans by Whites. So living our truth may be simply NOT living at all… because you are facing obstacles from within and from outside your community. People know what albinism is and are very aware… but just not accepting of what it means…. due to some subconscious sense of inadequacy trickling down from our history in this country. Many of my peers have aggravated my soul in a blissful ignorance by stating, “You have the best of both worlds”. As though white skin equals a privilege they do NOT have access to. However it’s the simplistic thinking that keeps us stigmatized and rejected…. This can not be undone by dismissing root cause.
I’m Not Seeking Fame, but I Am Seeking Change.. I’m Not Afraid to be the Change I Seek
Systematic and institutionally Imposed isolation cause by low vision being seen as a weakness and mental defect is my truth. The deliberate revocation of opportunities as a result of this way of thinking, is a slow death. It murders your spirit and takes away the desire to fight. Being consistently seen as incompetent or treated as though you are because its easier to understand total blindness over low vision. There are a few reasonable accomodations made here are there, but the law states we can not determine what is reasonable for a company to provide. This isn’t simply discrimination these are personal attacks on the emotional state and well being of a person. When you received this treatment from family members and then go out into the world for education and work and find their is still no place for you,. because of low vision. Access and resources are scarce for us in the US as well. Saying that what we have here in the US is not available in other countries may be a true statement but, dismisses the importance of addressing human rights for those of us in the US.. It’s like saying one person has no running indoor water or electricity in their homes… but mean while it exists here and many cannot earn a living to pay for it or keep it on? When you are forced into low paying jobs because of low vision or perceived as a liability, its hard to earn a good living. Its this thought process that diminish the quality of life for many persons trying to do more that just exist in this world. To ignore this is a moral defect and selfishness that will keep us fighting the same issues with no viable solutions for the next 350 years.
The Next Generation May Have A Chance If....
Looking for a way to create representation for the albinism community in a positive way is and excellent goal. However we need to began putting more stock in who we are as individuals and our true talents and skills. Being a model is a admirable desire, but what’s wrong desiring to create and be a part of things that do not have the word albinism attached to it? If there are different facets to you why only highlight one? We all have natural aptitudes and interests. Sorting through, to the ones that bring us joy and are positive is important. Cultivating these skills through education and application, to become an expert in the area of your choice speaks for itself. Being a person with a valuable skill doesn’t require you to write the word albinism in front of it. It is it’s own pedestal and this creates value for persons with the condition. This representation is not artificial and much needed.
As our youth grow into young adults their source of guidance becomes their peers, more so than parents and other adult authority figures. Searching for their place in this world may become difficult as they began to determine the effects of light on their eyes, heat and sun on their skin with outdoor activities. Also why things like low vision associated with albinism may, limit accuracy and speed for a superior performance.
Extracurricular academic activities may require reading at a distance and detailed hand eye coordinated tasks which prove difficult depending on how low vision affects them. Being mindful that parents simply want the best for their children, we tell them they are special and beautiful. Their peers and other people in this world may not see what you see, because they only look at the surface.
Teaching our youth how to see their true beauty and developing their unique talent or gift, will help them reinforce what they are being told by parents. Sometimes its better to show people why you are beautiful than tell them. My father always told me how smart i was and my mother always treated me as though i had all the answers. Not because im a genius but because i would go find them. I would always think through things. The innate ability to want to do this created many opportunities to shine beyond just having albinism.
Who We Are As Individuals Matters!
Without a reference of why he or she is beautiful outside the appearance of albinism, the child can feel cheated, lied to and angry at the reality of how the world may see them. This can cause them to be distant with parents when they have previously had a close knit relationship. Can also be seen as a big change in mood or lack of interest in doing anything. Some parents see it as acting out and find the behavior difficult to deal with. The beauty in the condition of albinism is subjective, but the beauty in who you are as a person can be felt, not just seen.
Those experiences of rejection and mistreatment can be traumatic, have long lasting effects and start very early on in life for persons with albinism in minority communities. I was in preschool the first time one of my peers said, “Ewww why do you look like that.” A simple God made me this way…” isn’t sufficient for a person this young. Can also cause people not to believe in a higher power or be hopeful if this treatment becomes constant.
In more confrontational situations where people decide you as a person are not as valuable as them, and they are physically fighting, hitting or provoking others to join into a physical altercation… is far beyond bullying an children just being children. This is assault, battery and people trespassing against your person ; Simply cause they hate what you look like. Stop dismissing these instances as things children go through, because they do not have to be an expectation, just because you have albinism.
I understand the resolve to appear strong and look like you have overcome, but honesty of how deep these childhood episodes cut, are necessary to be shared because children are still suffering through this today. It can not be dismissed as simple teasing and discrimination. When these things happen in adulthood they can become triggers that take away from a person joy and ability to live to their fullest potential.
I hold my head up because how others see me isn’t what defines me. It is my character and integrity i want to influence, the impressions i leave behind. My contributions are based on my observations, research and combination of personal experiences. I am writing down this account through #TheABExperience to create my legacy. I hope that each and everyone finds a way to communicate and share their gift creatively, to build their legacy as well. Make it about you not just your condition.