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Grace Nzomo On Living Positively With Albinism

In this stunning headshot, Grace is wearing a red tam and lip color. The colors are a bold contrast against her thick gold statement necklace.

“Looking into the eyes of a beautiful young lady and providing encouragement is the spark I need to continue in my mission to empower people with albinism. I am very passionate about education and ensuring its accessibility to the disadvantaged.”

Grace Nzomo

Growing Up In Kenya With Albinism

Grace Nzomo, a psychology graduate from USIU-Africa, is a 25-year-old woman who is living positively with albinism. “Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Albinism occurs in all racial and ethnic groups throughout the world.” While many people are unfamiliar with the term “albinism,” many are aware of the word “albino” (sometimes used as a derogatory remark towards people living with albinism).

Throughout her life, Grace has faced bigotry and injustice simply because she has albinism. When she was enrolled in school her teachers had no idea what albinism was nor how they could meet her needs. In each of Grace’s classes, her mother explained to the teachers why Grace required accessibility so she could receive an adequate education.

Because of her poor eyesight, when she reached the high school level, Grace’s teachers decided she would be unable to learn chemistry, physics, and geography. She was also informed that since she was visually impaired, it was mandatory for her to learn braille. For Grace, this was unsettling as she felt ostracized because of her sight. In the end, she taught herself how to use braille yet because of its complexity she equated its use in mathematics to teaching someone the Greek language.

The education system in Kenya prevents students who use braille from studying among other subjects, chemistry, physics, and geography. Improved braille transcription in Kenya is sorely needed especially as far as the science elements are concerned. Unfortunately, approximately 70% of Kenyan children with albinism attend schools for the visually impaired at primary and secondary school levels. It’s here where they are forced to learn braille yet they are not totally blind. Grace says this approach “narrows down the student’s career choices by 50% which is very unfair and a violation of their rights to holistic education. However, this should not deter persons with albinism from realizing their full potential. Given the opportunity, they can study in mainstream schools and obtain careers in whichever field they desire—be it Business, Hospitality, Banking, Medicine, etc.”

There are innumerable misconceptions associated with albinism. Most children with albinism in Kenya are kept hidden in the ‘backyard of society’ away from others where they acquire very poor self-concept which later on leads to low self-esteem. Others are raised in single-parent families since the father disowns the mother and child alleging that his wife has been unfaithful to him with a ‘white’ man hence bearing a child with albinism.

Grace Nzomo

Living With Discrimination In Graces Words

In school, fellow students treated me like an object of fascination and the questions never seemed to end. ‘Why is your skin white? Is that your real hair? Can you feel pain? Why are your veins blue? Is your blood blue too?’ and on and on…

In the past, children were left in the sun so as to ‘develop’ pigment so as to be ‘normal’ like the others. Unfortunately, this only led to skin cancer as the child grew older. Nowadays, because of who I am, there is a market for my body parts in neighbouring Tanzania, particularly during the election period because some politician has been told by a witch-doctor to get my hand or leg in order to win that tough election.

It seems people with albinism are worth more dead than alive because when we are born, we are hidden away from the discriminative society and when we grow up and can no longer be hidden. Then we are hunted down for our body parts to make the most potent portion to guarantee wealth, success, fertility… you name your problem, even our bones will solve it. Such violence in its many forms is too close to home and this is the albino mentality by the society that we need to eradicate.

Choosing The Empowerment Route

Supporting the efforts of Dr. Choksey Albinism Foundation is in the interest of my work to improve the lives of people with albinism. As its former programs officer, I still dedicate my time and skills to provide workable resources to children with albinism and their parents who may have never had the hope of living fearlessly in this discriminative society. Looking into the eyes of a beautiful young lady and providing encouragement is the spark I need to continue in my mission to empower people with albinism. I am very passionate about education and ensuring its accessibility to the disadvantaged.

I engage in part-time modelling as I see fashion and beauty a way through which I can express myself and create awareness about albinism in a world which is filled with innumerable stereotypes about it. I believe that when one is comfortable with their own skin colour, then they have the confidence to face the world. In my free time, I engage myself in reading novels, swimming and dancing the Latin dances especially Kizomba which is my favourite.

I envision a society where persons with albinism are fully integrated, appreciated, and empowered to realize their full potential. Being able to brighten the lives of those I come into contact with is only the beginning and accepting opportunities of impact will take me even further.


Image Description:

In her stunning headshot, Grace is wearing a red tam and lip color. The colors are a bold contrast against her thick gold statement necklace.

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Reclaiming Life By Taking A Stand

Featured image description is in the body of the post.

“Time is priceless, yet it costs us nothing. You can do anything you want with it, but you can’t own it. You can spend it, but you can’t keep it. And once you’ve lost it, there is no getting it back. It’s just gone.”

~Allison DuBois, Medium

Recently I accidentally found the above quote. Well, it wasn’t really an accident since I was binge-watching the Medium series. In my opinion, I felt like this is one of the most accurate statements I have come across about time. For me, just thinking about time is mind-bending. While I understand I only have this moment in time I sometimes get caught up in the past and future.

Time, or rather my use of time these past few months has been very challenging for me. The majority of my time is spent working on social justice issues as it relates to people with disabilities. Because it’s unrealistic to take on every cause, even so, my passion can take me down a rabbit hole of mass confusion. Thanks to stretching myself way too thin I’m now a former scheduling stickler. What this means is I reassessed where I am, tossed my content calendar and I’m starting fresh in September.

Life, Times Three

While there is some overlap, looking at my life today I can break it down into three categories:

  • Home Life
  • Work/Virtual Life
  • Real Life

Home Life

In the following two recent posts, I touch on my feelings of self-worth and work:

  1. Juggling Perfection and Efficiency
  2. Max Peterson Scholarship Gives Joy, Love, and Wholeheartedness

For way too long I’ve confused ‘who I am’ with ‘what I do.’ This formula worked for me most of my life if I felt my work was satisfactory. The problem, however, was two-fold: I had unrealistic expectations and there wasn’t a clear separation between work and worth. When things were going well it was good but inevitably when they didn’t go so well I’d beat myself up. Beating myself up was only the beginning. The guilt of feeling like I wasn’t good enough or flawed sent me spiraling out of control.

Since I was my work and my work was my worth home life was practically nonexistent. I’d gotten so good at controlling my environment, that being a single mom and working full time was a piece of cake. The downside? I spent most of my time at work and never learned the value of self-care. As a matter of fact, my first of two vacations was 14 years ago. Needless to say, even when I had downtime I felt guilty because you know, worth and work. If I wasn’t working I wasn’t worthy.

Today, my youngest son lives with me and my grandson stays here four times a week. Then there’s my 81-year-old mother who requires attention, my dog, condo, and myself. While it’s a necessity, things like grocery shopping, gym, doctors, fall by the wayside because you know, worth and work.

Work/Virtual Life

The majority of my work is done at home where my laptop is connected to a large monitor. As an introvert, I work best in a quiet solitary environment with no distractions. Setting up and managing a website isn’t the easiest thing to do if you’re only semi-skilled but I’m doing it.

Cultivating relationships, networking, conference calls/meetings, researching, writing, editing, and scheduling posts can be daunting. Communicating with people on multiple social media platforms along with speaking engagements leaves little time for anything else.

When I closely examine everything I do I really don’t know how I manage. What I do know is when I’m in the zone I get annoyed with having to take bathroom breaks, I know—pathetic. Keeping up with email and text messages can nearly push me to the brink. And let’s not forget all the latest and greatest technology designed to make our lives easier.

Real Life

One of the best things about social media is meeting meaningful virtual connections in real life. When I say this I don’t mean every connection, rather only the authentic friendships that have developed over time. Two examples of connections I’ve met in real life so far this year were:

In October Chelsea, Max and I will meet up once again at the Disability InSIGHTS event hosted by another friend Amy Bovaird.

Real Life isn’t just limited to meeting virtual connections but it involves all those activities outside of the home. Get-togethers with friends, going to the pool, movies, shopping, art festivals, casual strolling or a car ride. Since I was able to travel a little this year I’ve participated in far more activities than ever before. Right now and in the future, I hope to continue experiencing real life.

The Way Forward

After my awakening at the Daring To Own You Story retreat, I knew I had to make some changes. Since I now know I had the whole work/worth thing backward being compassionate with myself comes first. I had already taken some steps a while ago to downsize possessions and tasks.

Social media is a great tool to reach many people but it can become addictive. It also contradicts the reason why I do what I do which is to create meaningful connections. Here are a few steps I’ve taken:

  • eliminating social media apps on my cell including WordPress
  • muting all cell phone notifications
  • not answering then blocking cell calls from unrecognized phone numbers
  • turning off my cell when working on a project that requires focus
  • limiting/canceling email subscriptions
  • sending salesy emails to my spam folder
  • not accepting friend/conversation requests from everyone
  • scrutinizing and eliminating automatic tools “to help make my life easier”
  • no longer use any social media during the weekend
  • limiting the number of social media posts Monday through Friday

For me, the solution to my time quandary comes down to self-preservation. And it’s pretty simple when you think about it, if I haven’t asked for it I don’t want or need it.

To some degree, I think we’ve allowed technology to control way too much of our lives. Am I saying technology is the big evil/bad? No, not at all and I actually love it. What I am saying and it’s something I’ve spoken on before and that is we have the power of CHOICE. We get to choose what we let into our lives. I don’t want technology making my decisions I want to reclaim my life.

Featured Image Description:

A monochromatic look with shades of beige/tan. I’m sitting on a blue outdoor bench wearing a cream-colored skirt with a slightly darker tank top and suede flats. My ball cap is metallic gold and I have on a denim jacket while posing with my black slimline #WhiteCane.

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Max Peterson Scholarship Gives Joy, Love, and Wholeheartedness

Max Peterson Scholarship Gives Joy, Love, and Wholeheartedness

The Challenge Course beckons. In the foreground is benches around the fire pit
The Challenge Course Beckons

My heart is overflowing! I was the first recipient of The Max Peterson Scholarship to attend an amazing women’s retreat. In previous years financial hardship prevented me from attending the”Dare To Own Your StoryTM” retreat. This year I couldn’t say no when Becky Andrews asked me if I’d accept the scholarship. The annual retreat connects and empowers blind visually impaired women and for me, it opened the floodgates of emotion.

The Max Peterson Scholarship is designed for women who have a financial need and who are making a difference. While the Scholarship covered a significant portion of the retreat’s costs I would still have to come up with the money for my flights. Without knowing how I’d do this I took a leap of faith and said YES!

In case you’re wondering, Becky Andrews, is the mastermind behind the “Dare To Own Your StoryTM retreat. I’ve known Becky for a few years and even featured her here on Bold Blind Beauty a few times. So meeting her face-to-face for the first time at this year’s retreat was sublime. She has a heart of gold and is as beautiful and authentic in person as she is online.

Being Found Worthy & Acceptable

Recently an incident happened that significantly hurt me, it made me question my worthiness and my character. I even went so far as to question whether Bold Blind Beauty and CAPTIVATING! were of any value.

Without going into the murky details, my past contributes heavily to my chronic anxiety and depression. Self-doubt and its companion self-hatred always lurked around every corner causing a paralysis I can barely articulate. What’s so ironic is I can see the value in others but have never really seen it in me until the retreat.

Trust has never come easy for me and those close to me know my motto: “trust no one.” There are very few people who are deserving of my trust and the common bond we share are our values. The leaders of the retreat, staff at the National Ability Center and my VIP sisters helped me see this.

Everyone is imperfect, it’s a universal condition called being human. Lord knows I’ve fallen short in many areas but at the same time, I’ve excelled as well. Practicing meditation and mindfulness at the retreat helped me to find my courage and my identity. 19 words sum up who I am and 19 more are my ‘why.’

Kindness, compassion, and a deep desire for social justice are central to who I am; these are my values. Bold Blind Beauty was born out of a personal need for empowerment that I wanted to share with others.

Knowing that Becky thought me worthy enough to receive the scholarship in honor of her dad brings me to my knees. The work she does is life-changing and this I can attest to as I feel like a renewed person.

Lessons Learned At The Retreat

For Becky to recognize my work on Bold Blind Beauty and CAPTIVATING! Magazine means so very much to me. Losing eyesight can be a lonely and frightening life-altering event. The reason I blog is oftentimes family, friends, and the general public don’t understand sight loss.

I created Bold Blind Beauty to help women living with blindness/sight loss to feel less lonely, empowered and beautiful. Embracing our situation by choosing to courageously continue living our best lives while uplifting others is powerful.

If Bold Blind Beauty weren’t enough, last year I partnered with an image consultant and together we launch CAPTIVATING! This accessible online magazine showcases people who are living and thriving with disabilities. Like our tagline, we both truly believe “The power and possibilities of inclusion are limitless.”

So What Exactly Did I Learn At The Retreat?

  • I’m worthy of self-compassion
  • The keys to true connection are vulnerability, authenticity, and shared values
  • Taking the risk to trust can lead to extraordinary outcomes
  • Empathy connects us and is required to respect individual life’s journeys
  • Facing fears unlocks doors to greater opportunities
  • Being grounded in kindness and compassion makes connecting with others easier
  • Meditation and mindfulness are excellent tools for achieving balance
  • Contentment can be found in wholeheartedness
  • Cheering and elevating others is empowering for all
  • The most precious gifts we can bestow on others are the gifts of experiences

Final Thoughts About The Retreat

The lifechanging “Dare To Own Your StoryTM” retreat was held at the National Ability Center (NAC) based in Park City, Utah. Inclusion, adaptation, and empowerment are at the heart of the NAC as their motto “I CAN” focuses on abilities.

Before the retreat, my life was largely dictated by my fears and blindness increased these fears. In my wildest dreams, never could I have imagined I’d achieve the remarkable feats I accomplished. Knowing I wholeheartedly trusted Becky; her associate, Lisa, and the staff at the NAC makes this experience even more memorable.

After years of therapy, for the very first time, I felt safe; was able to meditate, and practice mindfulness. The 3 greatest gifts I’ve received from the entire experience are:

  1. my connections with my Bold Blind & Beautiful VIP sisters,
  2. facing and overcoming my fears on the challenge course, and outdoor adventures
  3. and finally self-compassion.

The value of these gifts is immeasurable. I’ll be eternally grateful to Becky and the Max Peterson Scholarship for allowing me this remarkable experience.

A Plea To Help Others

Were it not for Becky’s kindness I would not have been able to write this post. Because she valued me and believes in the work I do I’ve seen a side of me I didn’t know existed.

The price of confidence and empowerment are immeasurable and I’d love for other B&VI women to receive these precious gifts. You can help by donating to the Max Peterson Scholarship at the Oasis Center For Hope. If you have any questions or need additional information you can contact Becky at Resilient Solutions, Inc.

Max Peterson Scholarship Gives Joy, Love, and Wholeheartedness Featured Image:

Becky and I are standing arm in arm in the bike shed at the NAC. Ready to hit the trails, we are wearing helmets and casual clothing before our bike ride.

Additional Images:

  • Challenge Course Beacons. The course contains a rock wall, pirate ropes, and all sorts of fun mid-air tasks.
  • 3 photo gallery (clockwise from bottom right):
    • After hitting the bike trails my VIP sisters and NAC staff all posed
    • Our crew of VIP sisters and NAC staff on the bike trail. Recumbent, tandem, side-by-side, and stand up bikes were provided.
    • 5 of us are on the zipline platform (I’m in the middle).
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Flexible Yet Strong & Empowered

Flexible Yet Strong & Empowered

I am flexible yet strong in times of change.

Daily Word, July 22, 2019

‘Complicated’ is the word that used to come to mind when I would think of my relationship with my mom. Yet at 81 years of age, she has blown me away with how much insight she has into my character. Here’s a beautiful gift she gave me today from the Daily Word, July 22, 2019:

There is a natural order to life that I can trust. Life has taught me that while change is inevitable, I need not worry. As I remain present to changes in my life and in the world, I strive to remain open to the flow of good. Flexibility is my strength. Like a willow tree in a windstorm, I remain grounded.

When I feel concern for myself or a loved one, I take a moment to be silent. Letting go of limiting patterns or worries about the future, I release resistance and open to divine inspiration. I realign myself so I can approach every life situation with a sense of grace and ease. From a centered state of mind, I affirm: I am flexible yet strong in times of change.

Resilience

The piece I’ve just shared is titled ‘Resilience.’ What ‘s so interesting about these words is their connection to recent events and my mom’s eerie sixth sense. Since there is a lot to unpack both literally and metaphorically I will write several posts on these experiences. Today, however, I want to share a brief overview of the most current “Daring To Own Your Story” Women’s Retreat.

For far too long, I’ve seen the value in other people that I felt was lacking in myself. Embracing doubt, fear, anxiety, and a sense of worthlessness has long been my M.O. yet on July 11 something remarkable happened. This day would take me to the National Ability Center where I’d find strength in my vulnerability.

Becky Andrews of Resilient Solutions Inc. challenged me and nine other blind and visually impaired women to own our stories. Through our shared connection of sight loss, in four days we developed a sisterhood many people long to acquire. At the retreat, we participated in a number of group activities like archery, hiking, biking, and the challenge course.

So much has happened in my life over the past few weeks it’s been hard to obtain clarity. The death of one friend, cancer diagnosis of another, then traveling out of state three times in one month has been taxing. I’ve been afraid of falling behind here at Bold Blind Beauty and CAPTIVATING! Even so, life continues in spite of these events and I’m very grateful for all the opportunities that have come my way. Receiving my mom’s message on resiliency was the icing on the cake.

Flexible Yet Strong & Empowered Featured Image Description:

  • In this photo, I am 45 feet above the ground crossing a log suspended in mid-air. One of the course staff members guided me across by walking backward as I held her left hand.

Additional Photos:

  • A gallery of three images showing me in stages of climbing the rock wall.
  • Another gallery of three photos showing a group of us at the summit of our hike. A group photo of everyone who biked and a photo of Becky and me posing in the bike shed.