Growing up I really struggled with the way I looked, frequently hearing comments about how my eyes looked funny. Even at the age of 50, there are still some days where I lack confidence in my appearance.
As a lover of technology, I was naturally drawn to Terese when I sat in on one of her courses during the conference. She’s a brilliant Assistive Technology Specialist whos vibrant personality brightens any room. Later in the week, I got to know a little more about her during a semi-formal networking event as we were seated together during the dinner. I must admit I was thrilled to be seated with Terese as I was dying to pick her brain on cell phone technology as it relates to accessibility.
A fashionista at heart, when our conversation turned to fashion I needed to know more about this beautiful woman. We found we shared a passion for beauty and addressing some of the stereotypes where beauty and blindness intertwine. Terese’s love for fashion is evident in how she presents herself to the world. Next week you’ll get to hear her beauty advice to those who are new to sight loss. At the heart of Bold Blind Beauty is the message of empowerment and confidence and I really like what Terese has to say about this topic:
Terese, thank you for allowing me to shine the spotlight on you. You are a Bold Blind Beauty!
Featured Image Description:
The image is a faux fashion magazine cover titled Blind Beauty. Terese’s photo on the cover shows her looking very stylish in jeans, a burgundy top, and a long taupe sweater. She paired her outfit with a gold statement necklace and brown peep toe, sandals with a block heel.
Blocks of text superimposed on Terese’s photo are: “Bold–She Keeps Pressing Onward, Blind–She Has Deeper Insight, Beautiful–She Sees To The Heart Of Others.” “Real Beauty Transcends Barriers.” “Makeup Trends for 2019–How To Maintain A Flawless Look”
Nothing brings out the crusader in us like becoming a parent, especially when we have a child with special needs. Gracie Benedith-Cane is a remarkable mother and crusader for her visually impaired son. A few months ago I wrote the following introduction to “3 Blind Mice Are Stylish Mice With A Purpose,” an article featuring Gracie‘s work.
One of the most pervasive and persistent misconceptions about blindness is the theory that we cannot appreciate beauty. What many people don’t understand about blindness is that it is not a matter of seeing vs not seeing. Blindness is a vast spectrum where the majority of people who are blind have some residual sight.
I’ve been following Gracie and her son Wani on Instagram for quite some time and what immediately caught my attention was her charming logo. The three blind mice who also happen to be the characters in Gracie’s children’s book “What’s Cool About Braille Code School?” are very stylish looking images. And of course, they look quite cool with their white canes. The book was “written to inspire, uplift and give confidence to children who are visually impaired as well as inform sighted children about braille and special needs awareness.”
As I said in my intro, though I’ve followed Gracie for quite a while, I’ve only recently spoken with her by phone. A request to feature her on Bold Blind Beauty ended up being a two-hour-long call. As a fellow parent and disability advocate, Gracie and I discovered we shared many commonalities. From the moment we greeted one another, we excitedly began talking about our work and exchanging ideas on how we might help one another.
Since Bold Blind Beauty’s Cane EnAbled series focuses in part, on parents of blind and visually impaired (B&VI children), Gracie agreed to answer some questions about her experience.
Since the majority of the world is sighted many people are never exposed to or know of people who live with blindness/sight loss. Before your son was diagnosed what was your level of understanding about how blind people live their lives?
I did not have any understanding about the lives of blind or even visually impaired people… I only understood the experience with watching tv shows like Little House on the Prairie when the character Mary went blind. That was my first experience in seeing how someone reads Braille as well.
Gracie, you are an incredibly fierce and passionate mom whose love for her children is undeniable. It must have been heartbreaking when you learned of Wani’s diagnosis. Can you tell us what led to his diagnosis and how it made you feel?
Well, when Wani was 2 months I saw that he had rapid movements in his eyes so I went to his pediatrician who then recommended me to go to an ophthalmologist. He examined Wani and told me Wani was not going to have 100% of his vision. At 11 months he had his 1st MRI and the findings were that Wani had Septo-Optic Nerve Dysplasia. I was DEVASTATED and the devastation lasted for almost 2 years! I felt lost, alone and confused as to what and why this all happened.
With Wani being your firstborn everything was new to you. After you received his diagnosis how did you manage his care? Were there service providers readily available to assist you to meet Wani’s needs and help him meet critical milestones?
His pediatrician, the wonderful Dr. Liza Natale gave me information about services and specialist for Wani. I got ALL the services meaning ophthalmologist, endocrinologist, and 5 therapists to come into my home 5 days a week to give him the therapy that he needed in his very young age.
From the moment we learn we are about to bring a baby into the world we have expectations of having a ‘perfectly’ healthy child. As a parent of multiple children with and without disabilities is there a difference in how you feel and/or interact with your children?
There is no difference on how I feel or interact with them. I give them all that they need when they need it. Giving them hugs, guidance, attention and most importantly LOVE! With Wani, I have to do things slightly different for better understanding and safety as to what he does not see and my 2nd child, my daughter Niara understands fully and even assists her brother in so many ways. Their relationship is So Special to see. My youngest son, 2 yr. old Zaire was just diagnosed moderately autistic and I have services and therapist in my home again. My Life!!
How did Wani’s sight loss influence you come up with the idea of your book “What’s Cool About Braille Code School?”
I was at an office called Invent Help to see about a patent for my product and the man whom I went to see kept looking at my 3 blind mice logo and told me that I should do something with them. It created ideas on how to use them. I saw how sighted children reacted to Wani everywhere we went. Wani did not have sighted friends. So I decided to write the book to give sighted kids a better understanding as to what the life of a blind child is like; to create a conversation and interaction between them.
What advice would you give to new parents who’ve received a diagnosis that their baby has a disability?
I would tell them that I can relate with their experience and that although they may feel whatever they are feeling they MUST be PROACTIVE! It is VITAL to be proactive, do the research on the diagnosis and seek all the services that their child needs. MOST of all I would tell them they are special people to have had a special needs child SO it is also vital to PRAY for guidance, LOVE and LEARN your child. By doing all of this I would promise them that all will be fine and that their child will begin to show them that all will be fine!
Would you like to share additional thoughts on blindness/sight loss or how we as a society can improve how we view disabilities in general?
I would like to share that no one should assume that when they see someone with a white cane or a wheelchair they should automatically feel so sorry for the person or assume they are not ABLE. Give them a moment/chance to show you their capabilities!! Also, society is so far behind on giving the blind and VI more access to supermarkets, clothing and toy stores! Braille should be EVERYWHERE not only on bathrooms, exits, and elevators… they want to be able to shop and do all the things sighted people can do.
There is no one-size-fits-all approach to raising a child with special needs and every family situation is different. However as a parent of a child with special needs, it‘s an instinct to learn all you can about their diagnosis to help them learn to live a fulfilling and independent life. Like Gracie said in her comment, she was at first devastated to learn of Wani‘s sight impairment then after a period of time, she discovered his particular needs and how best to help him to achieve his goals.
Featured Image: A photo of Wani and his two siblings. L to R Niara, two-year-old Zaire and Wani are standing outside holding hands. Wani is holding his white cane in his left hand.
Gracie is standing hugging Wani while they pose for the camera.
A gallery of three images of the blind mice: 1) the logo is an illustration of three blind mice each of whom is holding a white cane 2) cover of the book “What’s Cool About Braille Code School” contains the illustration of three blind mice who are standing in front of a school building in red and white coordinating school uniforms 3) the back of the book with a summary of the books content.
The second gallery of three photos: 1) Wani is standing with his white cane 2) a photo of sneakers with the right/left braille patches on the tongues 3) a clear package of the left/right patches.
“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.”
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.
Living With Discrimination In Grace‘s 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.
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.
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:
In the following two recent posts, I touch on my feelings of self-worth and work:
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.
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.
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:
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.