My
article "Pick A Struggle" was published in the 100th issue of the
quarterly magazine published by the National Organisation of Albinism
and Hyper-pigmentation. ( NOAH ) The very same founders of NOAHCon.
Completing my Bachelors Degree was so hard for me as a visually impaired
teacher, simultaneously working so i could pay my way through school and
studying. Yet, here we are two years after I finished as the first of
my family to go this far academically. Here we are two years later, with
a published article that harnesses my struggles into tips that could
help others like me all over the world.
I hate
talking about myself (i know i know, shocker!) because it always feels like a brag but I'm trying
to get more comfortable with it because there is no shame in
achievement. The more we share both struggle AND success i suspect the
more people we have a chance at reaching and encouraging.
I'm proud to check this one of the bucket list in such a commemorative way. Did you read the article? Tell me, what'd you think?!
Would you believe me if I told you we are already at NOAHCon Time
again?! The Noah Conference 2018 is happening this year in Kansas City
and I won't be going due to lack of funding. Still I am so grateful that
I had the opportunity at all to go in 2016! I could not have made it
there without the sponsorship of the follow organisations.
My trip to the NOAH Conference 2016 was made possible by sponsorship from: The Writers Association of Grenada, Kallalou Designs, Petite Anse Hotel, The Office of the Prime Minister and various good Samaritans who insist upon not being named due to kindness that continues to overflow.
THANK YOU
Also this directory will be updated as I am in no way done writing about this topic!
It's Albinism Awareness Day again and today I want to talk about a topic I've been thinking about for a very long time; having albinism in the black community. This is a topic that for me never seems to grow easier to write about. It is without a doubt that we live in a time that is incredibly racially charged. So, what does it feel like to look like one race and be another? I think this a plane of existence most people can understand, especially if you are mixed raced.
Both my parents are black. I am a black girl with white skin living on an island where a white person is the exception not the norm. More often than not, a white person is a tourist, that has descended upon our land by ship or plane in hopes of having a tropical experience.
Now, growing up it was not particularly hard for me when it came to race. I never considered myself white. I was however called 'whitey' at every turn and I DID look like most of the people on my television screen at the time.
Can you imagine the annoyance of a child to a name like that, whitey, reds, yellow girl, white girl, pinky, during a time when developing identity is paramount? Still, I knew and understood who I was and I think that was made easier by the fact that I lived on an island with a vastly black populous.
Now, here is when it got interesting.
Consider this dear reader, running around in blonde pigtails and big puffy princess dresses in oversized glasses (that didn't work but we'll get to that part) at the age of oh lets say....zero to five. Everyone considering thee the belle of the ball. The notion of a little white child is new, it is accepted then, it is considered the standard of beauty to be pale, blonde, blue grey eyed and twirling. It is so rare to have a child who 'came out that prettily pale'
It is the image, then, presented on television screens. It is what the population says is " so pretty, so pretty!! " aren't her parents so lucky?!
7 years old now, let us imagine it:
Off to school in the city. Different, suddenly different isn't as cute to your pairs. Different is scary to many many children. Different is tourist isn't it? Different is the reaction it pulls from little eyes and from little boys and girls you hope will be your friend but who are scared of you because you are different and you don't belong here. How could you possible? You belong where the people on TV are surely.
Maybe this can start making a seven year old wonder if there is something to be afraid of after all. It can make a seven year old little girl start to notice that when she looks at family photos, she doesn't look like her parents or her siblings in a way that she never noticed before. It can make a seven year old girl have questions nobody is prepared to answer because no adult around her yet knows the answers to them.
Enter Puberty!
Enter curves and rebellious spirits and thick lips that can now be a sexual focus without people thinking to very much of it. Suddenly, we are beautiful again. We are African hips under milk white skin, we are eyes like the ocean and hair like sand on the beaches of our island. We are hip hop rhythm and drum beats pulsating through almost every model and lead actress on television screams then and we are beautiful beautiful oh so beautiful because we are just...sooooo....white and isn't that something to be excited about?
Consider this hurricane thrown at a child who is every standard of beauty personified then but is also the same girl who is whispered at and yelled at and followed and mocked in the streets and called names that define her o
nly by the attributes that where THE MOST beautiful thing about her a few years ago.
Consider black people making the mistake of calling her, demanding of her that she admit she is a white girl because she has white skin after all.
Having albinism in the black community is a strange thing. Having albinism in the black community in the Caribbean may be even stranger. Consider having to wonder if the affection shown, the want and longing for a body is due to the fact that she is the befits of the black race without the harsh reality of looking it. Consider the moment she realises that the slogan for pride in ones blackness, hashtag melanin, excepts her too.
Consider the rationally charged world, as she sits amongst justifiably angry friends who discuss their anger of the injustice dealt the black rage white racial slurs of their own. Who bite back at an entire race of people by pointing out what they look like and speaking in loud tones of aggression. Those moments, after a police killing of an unarmed black man, those moments after watching 12 Years A Slave and Driving Mrs. Daisy where she is angry and her friends are angry and everyone is okay with being vocal about it and she wants to be too because she is not white but she looks down and her hands still are.
Now, I will be honest with you. I have felt all of those things and so much more in varying degrees. I have not written this post to grasp at pity. My intention is to warn of the dangers of colourism to any person's identity. To warn that the way we speak, to tell a person that they are beautiful because of or as a result of the colour of their skin, regardless of race, ultimately does more harm than good for our goal of acceptance. I was very blessed too you see...I got to be that girl who grew up to find the answers to give to the teachers who didn't have them when she was little.
I am the girl who grew up the woman to understand and tell the world with the full force of her words that beauty isn't even skin deep. Beauty is subject to the beholder and what we ascribe to social class.
I am that girl who grew up to be the woman who was financed in part by her entire nation to go to a conference and stand in a ball room with nine hundred and minty nine (maybe more I don't have the exact number but it was the first year after they pushed past one thousand ) who finally looked like the girl she was in the mirror. The girl who turned woman and stood there with who were black and white and had questions and answers.
I am not that girl anymore with confused notions of how beauty can appear and disappear even though skin colour says the same. I am that woman who will spend her life making sure that that girl, the one who is led to feel those things ? Does not have to exist if I can help it.
I am that woman who explains now the dangers of colourism in the black community. How we speak about the shade of our skin to ourselves and to each other is very important. I was very blessed. My parents taught me that I was beautiful not because of the colour of my skin but because of the strength of my will. My friends taught me that I was beautiful because of my kindness and willingness to give and be generous, Time taught me that beauty comes wrapped up in all skin tones and is not the property of one group or the other.
The NOAH Conference helped me to experience that in real time. While I was there I took the chance to ask a new friend with a type of albinism you are probably not used to seeing, a few questions that might shed some light for you. He and I spoke about being and having children that don't look as you do, the impact of others with the same and or similar conditions and much more. Check out my interview with Torey bellow!
Meeting
adults with albinism was a treat. I found myself surrounded by app
developers, Olympic athletes, kindergarten teachers, medical
professionals, lawyers, world travellers, beautician, linguists... there
seemed no boundary unexplored. This very fact is what made it so impact full.
There
have been so many things in my years that I have been ruled out of or
have ruled myself out of because I was of the opinion that it was an
impossibility with a disability.
Knowing
that you are capable is nothing compared to experiencing representation
first hand. Being in a room full of hundreds of people who have
traversed roads so very different from my own...who have conjured and
defeated ideas that seem at first glance impossible, served as another
reminder that the world is bigger and greater than the boundaries of our
comfort zone.
I want to
make something clear because this is something said to me constantly
when I explain my worry about not being able to accomplish a task:
every
person with albinism can have a different visual acuity than that one
person you met with albinism that one time who did that one thing.
Shocking I know, that we can have the same condition and not be exactly the same. What a surprise that we can have a similar skin complexion, eyes and hair colour and not be exactly alike by skill level. Hey, does this sound familiar in anyway, the judgement of a whole group of people as according to how they look? The expectation that they should fall into a particular bracket not made by themselves?
You
may meet a person with albinism who has sight that is corrected to
20/20 vision with glasses as well as you may meet a person who is
legally blind and who corrective lenses do not help. You may meet someone
who has vision acute enough to get a license as well as you may meet
someone who needs a cane, Braille or a guide dog to function day to day.
All people with albinism do not have the same needs and not only is it prejudice of you to assume so it's down right rude. I
am an individual, treat me as such. Get to know me, ask questions and
do not assume to understand the way I see the world through the eyes I
have been given.
I don't
just walk up to every person in a wheel chair and assume they have no
functionality beneath the waist because that would be rude. I would
accept that this person has a right to their privacy, I would get to
know them and find out if they are comfortable answering my questions.
Don't
just decide how to help a person, ask how you can help them. Do not
hold them to the standard of that one success of that one person you met
that time. Hold them to their own capability.
I know that it is tempting to do otherwise, as human beings I think we find a strange satisfaction in categorising things, placing things into boxes and telling ourselves that the ability to do so is a show of understanding whatever we have placed in there. This is not always the case that works, especially when you are dealing with human beings with an ever evolving conciousness, ever shaped by on going experiences.
Meeting
adults with albinism was a breath of fresh air because different means
talented in unique ways as much as it means bonded by rarity. It means
moving from an isolated life style to realising that you are a part of a
community of rarity that aspires to the same sense of normality as
anyone else would.
Doesn't every human being deserve that respect?
Yes, the answer is yes.
Peace. Love. Respect.
Thank you to everyone who had a hand is sponsoring my trip! All the people whose name I don't know, Kallalou Jewellery, the office of the Prime Minister and anyone else i have invulnerability not named by name. I appreciate you s very much!
I
am an educator by profession and as an educator I have learned to love
learning on many levels. When I first saw Honey, she was in a bright red
t-shirt and a beautiful bright lipstick. Her eyes were lined perfectly
(i saw em when she got closer be quiet and pay attention to the story) and she had a sweet engaging smile.
I
found myself in another situation where I was staring without realising
it. I watched her approach and though ah look at this beautiful brave
woman in a fabulous red lip. Then she said hello. Obviously, I had to complement her lipstick. She said 'thank you, I did it myself and I did my lashes and my brows'
Now Honey has a pretty southern accent ( my favourite ) a gorgeous face and
a pleasant engaging demeanour. So talking to her was just as immediately
captivating to me as seeing her. Her captivation does not lay
simply in the superficial, in fact, as soon as she began talking I was
drawn in by much much more intangible awesomeness.
Honey oozes capable and resilient.
She
was at the conference with her daughter. They were dressed in red to
easily identify each other in a crowd. Given what I mentioned about
loosing children with albinism here I'm sure you can appreciate the
foresight. Honey's daughter came up and it became immediately clear to me that I was dealing with a multi generational string of strength and fortitude. While I was busy being impressed with their compliments and achievements, they kept pulling more and more out of their sleeve! Don't
think that stopped me from being even more impressed either.
I
don't know how we managed it but I learned so very much of their life
story in that short conversation in a conference auditorium. I learned not just about what she had done but that she could do it and I was hooked. Confidence and capability so rarely come as a pair I knew it was a blessing to be fortunate to be able to meet and talk with them, sharing in their experience even if it seemed so much by silliness and chance that we met.
When
I speak of Honey I speak of my gorgeous, capable, luxury car drag
racing, business co-founding, dog training, horse riding, make up
mastering, loving mother and motiving friend.
Honey
is amazing! Not just because of what she has done, not just because of
what she can do but also because she has raised a family of strong
independent individuals with the same attitude of getting it done. Ladies and gentlemen that is what successful parenting resembles. My friend Honey
reminded me that the world is not just big, it is waiting to be seized by
anyone willing to adventure. Regardless of our hardships, life is ripe
for us all. Just ripe in different ways. Success and fear look different on everyone.
I
spent a lot of time with Honey and her daughter Dona who reminds me
merciless of the same thing. Dona and I sat at the front of the trolley car
together and watched it go down a steep incline. Now
I do not like heights, with my depth perception remember everything
seems higher than it actually is that's why I stay getting my holes and
my shadows mixed up. Dona
sat with me in a moment of both fear and awe and reminded me of the
lesson that had gotten me to the conference in the first place.
Staring
down that incline, as we descended at an angle? Dona reminded me that
awe and fear co-existence and that's perfectly okay. I mean, it's scary
and all you can imagine in the moment but after you live through a
thing, you realise that it's only big before you do it.
I
can still see the scene so clearly now, looking down that incline from
the front of the trolley, my heart is my throat for so many reason. One
because what the heck was I thinking by doing this?! Two, I'm so glad
I'm alive right now.
It had been said that it is only with the reality of dying do we appreciate life itself. Honey is not at the end of her life but she sure has lived a lot of it fully, actively with value, planning and precision. Honey reminds me that it is living life that makes it sweet.
me with Honey, yes I know it's blurry but i love this photo because it is truth!
Four days later I went back to New York and bought myself my signature red lipstick.
Mine
is Mac's Lady Danger, not Ruby Woo like every other woman I know seems
to love and swear by. My Mac signature red is Lady Danger. Red is a bold unapologetic lip and on these lips of mine built from black heritage
against porcelain skin?! They're more than conspicuous. Sometimes I
still get it all smudgy round the edges but you know what? Life is smudge
round the edges!
After Honey, I've never worn my red in remorse a day
since and I don't intend to so do. Think it's too bold, too alive?
Tough, look away because life is worth living and red lipstick is worth
wearing, give me full lips and a full life any day of the week, red
lipstick and all!
Taking a self defense class as a person with a visual impairment is one of the most empowering thing I have done in a long time.
I
have been harassed on many levels in my life, I have been accosted in the
street where everyone can see, I have been followed and grabbed and
laughed at while it all happened. Yes, right here, in my beautiful country, I have had many female friends who have been accosted likewise and many male friends who have shrugged and suggested that we just don't go to those places.
Except sometimes those places are in the middle of the capital where you take the bus home.
Unfortunately, usually when I speak of this what I'm told is that this is normal. Even if I accept that it is normal to be publicly violated in my country I will never accept that it is right. Now by now you must know that I am a Christian and for me part of that Christianity means standing up and saying NO to something when I am presented with the notion that normality equates right.
I
woke up very early to take that self defense class and one of the
things I learned from itouch self defence is that those things, being
harassed, leaves physical residual affects as well as the type you
cannot see.
I had to be
told so many times by my instructor to calm down, to go slowly, that
this was practice so I need to be careful or I would mistakenly hurt
someone. My reactions were involuntarily serious every time I had to
conduct a mock exercise due to being involved in the real thing far too
often.
I think every
person should learn to defend themselves from assailants who society
empowers through acceptance of their actions into thinking that they have a right to
take security from others.
Taking
a self defense class was one of the best things I did at the
conference and I would do it again and again if given the
opportunity. Then,
I would teach it to my daughters because if I live in a world that
tells me I should expect a man to hurt me, I will make it a world where I
will know the quickest and most effective way to make him fail at it. Then, I will teach it to my daughters. Oh, and for the sake of equality let me say, that goes for if the world tells me that i should expect a woman to hurt me too. Unfortunately statistics are still in the majority of a male assailant and so are my experiences and the experiences of my loved ones.
Also, shout out to my male friends who have not averted their eyes when I have been accosted. Shout out to the ones who have said no when the notion has been suggested.Thank you for being part of the solution.
My trip to the NOAH Conference 2016 was made possible by sponsorship
from: The Writers Association of Grenada, Kallalou Designs, The Office
of the Prime Minister and various good Samaritans who insist upon not
being named;their kindness clearly knows no bounds!
My story of meeting the mother of and a tween with albinism
is...memorable. There were so many sessions to attend and in the midst
of my overload I wondered into the end of a session that focused on how
to handle Street harassment. Ivy sat at the back of the room, I think we
both kind of just wondered in late.
I don't even remember how we struck up a conversation. I only remember us
talking about the various violent reactions her daughter had to deal
with due to the cruelty of other children.
I
wont cower to tell you how shocked I was..how much it shook me learning about other kids breaking bottles over the head of this little
girl who just wanted to go to school, learn and live....it hurt me.
I
know what it feels like to be grabbed in the street without permission.
It boiled my blood and ached my heart thinking of this girl much
younger than I, who should only have to focused on deciding on what she
wants to grow up to do and nurturing that growth, being cornered and having bottles broken over her head because she doesn't have as much
pigment as her classmates.
It shocked me, this happening in America, not in Africa or China but in one of
the states of a leading first world country. In a place that is known through media for being a place of freedom and acceptance a girl is holding her hands
in the shadow of the day and dreaming about being darker so she can escape harm and simple exist free. She is
breaking into tears because she is questioning her faith as God didn't
answer her prayers about the colour of her skin in the morning when she woke up. I'm not even just talking about the girl in the picture any more, this is a real situation, real accounts but I am saying to you that it is not an isolated account. How do we change that?
Maybe we remember that we are more than skin colour, that we are more than #TeamLightSkin and more than #TeamDarkSkin, Maybe we remember that race is more than melanin, a lack or abundance of it. Perhaps we entertain that worth transcends physical tributes? Maybe if we did that we would stop convincing generation after generation that they should filter their self worth through the lens of superficial characteristics. Perhaps it would allow them to more quickly and readily see the unwavering value of personality, skill and contribution to society. That is my suggestion but that's a whole different story for a whole different day...
I
had already taken a self defence class at the conference so I was able
to share that with Ivy and encourage it for her daughter too. We bonded
over the struggles of having to be guarded and protective over safety
due to looking differently and strangely enough, over roti. Turns out My
girl V is well acquainted with Indian heritage and knew all about roti
so you know my Caribbean self was impressed!
I
treasure V's friendship and can't wait till we meet again! Her daughter, whom we will affectionately call
Peanut-Buttercup, is a beautiful strong girl blossoming into an amazing woman.
Just over the course of the four days we spent at the conference I got
to watch Buttercup go from talking with her head down to leaving her
mother in the dust as she ran off to join her new friends.
I
still remember looking over at V and hearing her say ' I lost my child
for the first time' with a content smile bubbling up from her heart and spreading across her face.
Okay
let me explain that so you don't get the impression that V is
terrible, she is not. Parents with albinism have no fear on the day to
day of loosing their child with albinism. Let's face it, we stick out
like gold bars in a sea of tomatoes, you just can't miss us. To 'lose'
your child with albinism in a place where they are safe and with people
who understand their struggles and will rejoice with them in their
strength. To lose your child amongst people who will praise them simply
for being and not for being different...it is a deeply emotional and
unexpected joy afforded to us by the NOAH Conference.
In a
world were everyone is always desperate to be seen this seems
unimaginable the overwhelming joy of being able to simply...disappear
from sight for a change. Even more so if you are a person of colour.
For us to disappear
is a bit of a luxury. The NOAH conference put that luxury in our hands
and said 'have fun' so we did. When I share this with people who don't
have albinism, who can easily disappear because they look just as the
world expects them to so the world does not notice if they bow their
head I get disbelieving looks. 'Why would you want that?' is what I am
asked.
The truth is, we don't usually. I LOVE sharing life and experiences with people, you would know this if you've ever spoken to me. I wouldn't be writing this blog post if I simply wanted to disappear. Here is the harsh truth; we all have those moments, when we don't want
to be kind, when we want to throw on a hat and an over sized t-shirt and
simply fade into the masses consumed by our own uninterrupted self
discovery. It might be rare, if you are more on the extroverted side like myself, but these moments do happen, we are all deserving of them but we don't all get to have them.
For many of us
with albinism those moments are like finding a needle in a hay stack while having bad eyesight. A
stroll down the side walk never goes unseen and barely goes without
someone feeling like they have a right to comment on who you are, what
you look like and what you should do with your life. No thank you, I know who I am, I know whose I am and I should not be made to defend that constantly when the rest of the world is not.
Peanut-Buttercup
said this to me and know I will never forget it as long as I live 'I
used to think I was the only one in the world and this weekend I was one
in one thousand!' I had to put on a brave face y'all. I used to think
the same thing you see. On my little Caribbean island at 11 years old I remember stealing
myself against the isolation of being the only one that looked like me
in the world. Accepting that I would never look to my left or right and
see someone who looked like I did...
It
didn't turn out that way for me and because of the NOAH Conference it
didn't turn out that way for Peanut-buttercup either, thank God. The NOAH Conference was our opportunity to be a part of a community of rarity
Peanut-Buttercup is doing pretty good these days by all accounts, she's been out their joining groups, growing up and discovering herself safely and confidently with the aid of her amazing mother who, has taught her the art of a quick witted tongue and a no nonsense sense of self worth. V loves her daughter and continues to teacher to way of the strong willed, driven, capable woman. Those are the parents that build success from the ground up by teaching capable despite difficulty or difference.
Did the NOAH Conference serve to aid this, I would so say certainly.
--- My trip to the NOAH Conference 2016 was made possible by sponsorship from: The Writers Association of Grenada, Kallalou Designs (shout out to my boss earrings), The Office of the Prime Minister and various good Samaritans who insist upon not being named because they are kind beyond measure <3
After
meeting the little girl in the blue dress I stepped outside and ran into Laura and
her baby boy. I watched for sometime as he crawled happily about the
room, exploring the ground with his mother close behind. His mom and I
shared brief pleasantries but what was most clear is just how very loved is
her son. He was shy and she coaxed him into a smile, hugging him close.
I
don't get to see babies with albinism. The last baby with albinism I
knew was myself, not many memories to tap into there. Seeing them made
my heart flutter but if I'm honest, most babies make my heart flutter.
At
one of our evening meet and greets I was fortunate to meet the adoptive
parents of another baby with albinism. Baby A is a happy, healthy,
beautiful, shy girl, who clutched her mommy's leg with apprehension, as I
cooed over her elated. She is very loved by her entire family, her older
brother included. He is protective and guiding as good big brothers
tend to do even though he's not that much older than she.
Adoption is something very very close to my heart. It is
something that I have been passionate about since I was a little girl
and learned of its existence. This passion has only grown as I have and
as I conducted investigations into my own heritage. Meeting this happy
family gave me an opportunity not only to ask questions I've always had
about the process but to witness first hand the beauty of a complete
family made up of people who have love to give and a child who wants to
be loved.
I know that the bonds of love are much bigger than blood
connection. Baby A's momma is her mummy and will always be her mummy.
The love between them is potent and cannot be missed.
We
talked about her motivations for coming to the conference which were
mainly focused around gathering information to ensure they can provide
their daughter with all the help she needs as she grows into a thriving
and supported young girl.
Kurtis is a father of a child with albinism and fellow spoken word poet. It was so good to meet him! Kurtis was a chief male figure head in many of our sessions, representing the male voice and showing us what it is like not to be a mother but the father of a child with albinism.
He was frank about to toughness and veracity with which a parent may be required to teach their child to stand up for themselves. He shared with us his struggles with understanding that something what may initially seem as disrespect could very well be the side effects of a personal issue faced by the child with a visual impairment.
One of his examples was being called into school by the principal because his son was called in for being disrespectful by way of refusing to make eye contact, even while being disciplined. Kurtis explained to us that it had taken even him a while to understand that his son was not being disrespectful but was not keeping eye contact likely due to his nystagmus. He shared with us how it took a while for him to come to terms with this reality and underscored the importance of parents being ready to present and defend a reality they may be privy to before the rest of the world simply because they are parents. Kurtis was ready to stand up for his child because he took the time to
understand his child, to see that his son saw the world differently
but that didn't make him less than important or less deserving of justice than other students. He helped us underscore the importance of toughness and the right to equal treatment and understanding by the parent of a child with a visual impairment. It was a great asset to have him there with his boldness of truth.
All
children are young people with talents and the possibility of adding to
the world. It is the responsibility of the adults charged with taking
care of the world to see this possibility alive in the helpless and the
young and nurture it into greatness or tragedy... Children with albinism
are no different. Attending the NOAH conference did not prove this to
me; it enforced it.
Every child is as capable and as important as the eyes of capability with which we choose to view them. If you grow them in love and the possibility of success, they will water that investment and it will bare fruit.
------------
My trip to the NOAH Conference 2016 was made possible by sponsorship
from: The Writers Association of Grenada, Kallalou Designs, (aren't her earrings darling?) The Office
of the Prime Minister and various good Samaritans who insist upon not
being named, a further extension of their extreme kindness!. THANK YOU SO MUCH!
I
had numerous brief encounters with NOAH'S founder. While he made himself
readily available there were just so many people to be available to so I
am very grateful for the moments of meeting I had with him.
I was there relatively early at the start of it all, one the first day of the conference when things were not yet moving at break neck pace for the organisers. As a result I got to grab him for a photograph and set up an interview at his earliest convenience. It wasn't till the end of the conference at the meet the funders session that I was able to sit with him and have a quick talk.
During our interview we discussed:
- Why you should go to a NOAH Conference.
- The reason behind the creation of the conference.
- It's importance to past, present and future attendees.
- The importance of NOAH attendance to parents of and people with albinism.
I was blessed to be able to get the entire interview on tape.
Some of the advantages to attending as suggested by the founder include:
People with albinism experiencing life a little bit differently, the conference is a community that recognises and plans events with this in mind.
There are other people who are going through the same thing and that community can help validate the experience of living with a rare condition.
Attendees can gain information about the condition.
Attendees can learn tips and tricks to help navigate the fully sighted world.
Attendees can gain information about the services and needs of your child with albinism.
Attendees can gain assurance that your child will grow up to be a fully functional member of society.
Attendees can learn how to deal with the years of the unknown for your child and for yourself.
I will never be able to bullet point every reason for as the founder himself proclaims, it's hard to explain outside of experiencing it. It
is my hope that my encounter with him will help all involved to learn
more about the conference and gain any knowledge they might need to help
make a decision as to whether they should attend or not.
I will be bold enough to suggest that the answer, more likely than not, is yes.
My trip to the NOAH Conference 2016 was made possible by sponsorship
from: The Writers Association of Grenada, Kallalou Designs, The Office
of the Prime Minister and various good Samaritans who insist upon not
being named.
When she walked in she looked just like I felt. Nervous, scared, excited, confused, anxious. I was a grown up sitting with my hands crossed in my lap. She was being guided around by grown up. She was staring at her fingers, tying them and untying them in front of her. Her guide led her to me. She
said she was from far away. I said me too. She said she gets a lot of
snow where she comes from I said I get none where I come from. She is
from Canada I am from the Caribbean.
She told me about Canada, the rains and the floods and the snow. With excitement she shared with my and her voice got stronger and braver with every word as 'really?" I said 'waw' I said. She went on with flamboyant hand gestures explaining. I told her about the Caribbean, the heat and the trees. While I was talking she took up a lock of my hair, held it up to her own and
said 'hmmm...just like mine!' I said yes and with a heart so suddenly full I wonder how I remembered how to use words then, I showed her that my hands were
like hers too.
She was so shocked, her jaw dropped open and her little sapphire dress made a wide O around her body as she stared. I was too, I was shocked too but this time, I was a little better at hiding it.
She squealed with excitement and joy, gave me a huge hug
and ran away after changing my life forever. I'll never forget that moment with that child's pure, unbridled affection for a person that looks like you. I understood for the first time after her that...a baby of my own with albinism would not be so bad. It would not be the atrocity the world around me tries so loudly to convince me it would with every negative word they pitch or every unavailable opportunity. It would be a baby...with hands...with ten fingers and toes and joy just like mine. A baby that despite hardship could find joy in the world just like I have found it in the trees, in friendship, in overcoming challenges, in travelling and in faith. Just...a baby, with hands just like mine. Don't get ahead of yourself their my stance on birth hasn't changed. I'm just saying that for the very first time I realised...no I always knew that everyone was wrong but for the very first time I held just how wrong they were to my chest, felt her heart beat, listened to her laugh and thanked God she existed. All in under a minute.
Lets get back to our story.
This was my first exchange at the NOAH conference. Just a little girl under the age of ten and a grown woman far from home, both never in a situation like this before, both feeling shy and overwhelmed about it.
On the first night I went to the opening ceremony and the founder told us that we would cry, he told us that we would have a sensory overload. I didn't really believe him.
Then we were dismissed and I stood in the doorway by myself. I'm a very shy girl and I stood there marvelling about how shy I was in a situation I had dreamed about being in for so long. I could hear Mike in my head chastising me when we first got there at the hotel, I had refused to go up to someone I knew from facebook and had to physically stop him from loudly drawing attention to me. 'This is why you're here!' he had said. I ignored him then, as I usually do. Though I did hear him. There I stood hugging my fear tight and watching beautiful people walk right past me. This is why you are here I reminded myself.
People who looked just like me and nothing like me all at once filled the room and emptied it and filling it again. People with afros and dark lipstick and guide dogs and canes and babies, the babies owned the room!
The babies were being thrown into the air and caught. They were discovering every inch of the floor including the corners. They were vulnerable but bold, independent but calculating every step of their environment one step at a time. Their parents were watching in awe as their babies took life by the horns with no fear and we all truly lived in that moment, in that room together. My eyes caught on a girl with a mane of curly blond hair and dark lipstick and I was struck by how gorgeous she, so struck in fact that I forgot I was staring and only realised it when she walked right up to me and said 'You're beautiful' smiled and walked away. I have been told I am beautiful often so it wasn't that I had heard it for the first time. Parents, tell your children they are amazing, this will set the tone for the rest of their lives and they will never be shocked when someone else says it to them. When she said it, this woman that i had been staring at my heart kicked because it was her and I saying to each other that we are more than skin and difference. We who looked the same but nothing alike.... I needed to sit down. Not before I found that facebook friend I had been too shy to say hello to by the way (hey Kadie, hey Ariel, hey Gabrielle)
Then I found my little friend again for a picture. By this time she had made a friend her age and they were wrestling. I mean full blown, belly laughs, rolling on the floor, they were born to meet and share stories bonded.
I met a girl in a sapphire dress with a generous smile, bright eyes and a big heart and she made me weep. I met a girl who hasn't been alive for long but who has struggled and twirled and been brave and reminded me to be brave by her willingness to do just that very thing. I met a little girl with hands just like mine and I am so glad she said hello to me.
She was my first little friend at the conference and honestly everything went great from there. She reminded me that at the core of it all, this moment was meant for all of us to meet, to come together and appreciate every thing that makes us different and the same as people with reckless abandon.
This is why we are here.
To be continued Check out more from this series here 1 and 2. My trip to the NOAH Conference 2016 was made possible by sponsorship
from: The Writers Association of Grenada, Kallalou Designs, The Office
of the Prime Minister and various good Samaritans who insist upon not
being named.
So
they give me my key card. Which I had no idea how to use at the time for I had never been handed one before then.
We get on the elevator, Mike and I, who had proclaimed himself my bodyguard for the duration of my trip.
I'll tell you a secret, being in that elevator felt like the closest thing to going to Disney. At first when the doors opened every now and again we ran into pilots who clearly were catching a nap before a flight or people who appeared to be ending business trips. Then the doors would open and there they were, people with the whitest hair I've ever seen outside of a mirror. It didn't happen often, maybe openly once or twice because it was still early and most had yet to arrive. There was also a girl with vibrant lavender and pink hair who I tried not to stare at because I have been on the other end of stares. That hair was a deep good breathe though let me tell you.
When we got up to my floor. Mike, who was a few
floors ahead of mine had promised to help me make sure I don't embarrass
myself. He failed. Our exchange went as follows. Elevator doors open.
Mike: ok this your floor, you can get out, bye.
Me: um... I don't know what to with this? *holds up key card*
Mike: oh! Sorry I forgot! (then he laughed at me, rude)
Me: ....
Men in elevator give knowing looks
Mike: no no she really can't get into her room I have to show her!
Men: more knowing looks. Mike: No really!
*Elevator doors close*
Well, I promptly locked myself out the next time I
tried to do it. A lovely lady who's grand-family was from the islands helped me a lot though so another crisis averted! When I got in my room at long last I unpacked and shot a room tour for you awesome people, check it out!
Then much to my shock and confusion my hotel room phone rang, that conversation went as follows
Me: Hello???
Mike: hey Me: MIKE?! How did you get this number???!
Mike: um....its just the number of your room...
Me: oh! Waw...
Mike: *insert complaining about stuff like how small his room is cause he think he #baandboushie *
Me: I can't figure out how to charge my phone Wher eare the dang chargin ports?!
Mike:um.....Liz...there are charging ports on all the lamps you know that right?
Me: *checks* OMG! Mike, there are charging ports ON THE LAMP!
Mike: I know.
Me: That's amazing!
Mike: *unimpressed* I'm going downstairs to explore.
Me: Yes, me too!
To be continued.
My trip to the NOAH Conference 2016 was made possible by sponsorship
from: The Writers Association of Grenada, Kallalou Designs, The Office
of the Prime Minister and various good Samaritans who insist upon not
being named.
It's actually taken me this long to be able to write about my NOAHCON 2016 experience. Let's begin from the beginning; the day I woke up in a foreign country as a visually impaired person, about to travel solo for the first time in my life. I must admit, I was really brave up till that point of waking up on the day of my flight. When you get that close to a dream I think that you achieve a weird kind of clarity. It's like standing at the edge of a cliff and realising juuuuust how blue water is, just how big the ocean, just how deep is deep.
Suddenly my excitement was fear. My big opportunity was a brimming panic...but I was going anyway. I had decided this months ago, come what may, I was going anyway, in blind faith I am going anyway.
My
mother, aunt and myself took the bus to the airport...when we
eventually got it. We couldn't get the bus necessary to take us straight
to the airport because we had no change (not me my visually impaired
self was so prepared) and when we did get the change the bus was mysteriously delayed. I wasn't bothered, I was going anyway, remember? I'm repeating that because that was my 2016 mantra and truly helped get me there!
When
we finally got there my mother and aunt, ever helpful got me to the
line, filled out the necessary paperwork so that I wouldn't have eye strain so early in my trip and sent me on my way, thinking
they had helped me with all i needed and it was all good.
It was not all good. My family had the best intentions. I appreciated their help so very very much. Especially the not having to deal with eye strain part. Here is the thing, when it's hectic the visually impaired sometimes get forgotten. You are so caught up in making sure they have it that you forget to orient them.So this is what I learned in this moment, don't forget the importance of instructions. Oral instruction, include them in the how not just the done because you wont always be there but I will.
Oh and if you're visually impaired, appreciate the people who help you, even when they help too much, it's because they don't have any formal training. Remember, we're all figuring this out together. It's up to you to make it clear what are your limits.
The airport of JFK is very large, especially for a small island girl who is visually impaired and never travelled on her own. I
spent 50 minutes STRAIGHT running towards my gate after my family left me. 50 minutes trying to
figure out what airport signs meant that I was seeing for the first
time. Now let me explain, when you are a visually impaired person sometimes their are little things you miss...things that people have a point of reference for that you don't get because you don't grow up seeing it. Airport signs I missed in real life and in movies because I was too busy trying to remember bigger things...like I don't know faces and places?
In retrospect it was not that hard, certainly not as hard as my return trip to New York but that's a story for another day. I
read signs that I could see, used my monocular when I could not see
them well. Road machines I don't have in my country LONG distances. Thank you JFK for having large print and clearly distinguishable
directional signs! Saved my heart!
I got to my gate and pretended to be super calm while wondering if I did it right, if I was at the right gate. I think I only asked the very kind airport staff twice, TWICE as opposed to the two thousand times I wondered in my head if I got it right. Fun fact: one of those airport personnel was from my island, thanks for the love Jesus! I
succeed at calm and after sitting at my gate for all of two minutes in
anxiousness my plane showed up and I found myself running down to it.
Of
course there was the other nightmare of having to ask for help to find
my seat in the plane. Which I did despite embarrassing feelings because
whatever choice is there? Get it done. Be upfront about the things you need. Ask for help when you have to ask for help.
The air-plane people were kind and helped, I found my seat. Then
we sat there because it rained and we had to find an alternative route. Now, I had organised to meet up with my
friend Mike, who I kind of think of as my ANNOYING American
older cousin with albinism. You know, that's one cousin who tells you to look over
there and then steals your food? Or the one who tells all the cute boys
that you don't speak English? We met online years ago,
along with most of my friends with albinism. He had not been to the
conference in years. He decided to go. We were going to arrive at the
airport around the same time so my none American self could figure out
how to get to my hotel. (No I could not take an uber but he could so we
did, more on that later.)
Back
to me sitting in my tiny but comfortable plane after running to it for
the last 50 minutes. Then just sitting there, waiting for it to stop
raining and hoping I could find Mike when I got off plane. You
know, Mike my visually impaired friend? Who I, the visually impaired
girl who had never met this visually impaired friend in person was
trying to find in a foreign country for the first time?
He
did end up texting me and letting me know that his flight was delayed also (
such an undercover gentlemen when Jesus is on my side ) we ended up
getting there minutes apart from each other.
Fun fact: There
was a dinosaur exhibit at the Pittsburgh airport that had me mesmerised
for a second before Mike walked me through using the airport train, another thing we do not have where I am from, to find him. I bravely did as I needed to without looking like come-rob-me-bait (a genuine concern of mine) and then blatantly ignored Mike when I found him so I could update my instagram followers because I HAD MADE IT BABY! Your girl was so excited to be alive in Pittsburgh un-robbed and un-deported!
He was getting an uber so I don't think he minded too much. After
letting my mother know I was still alive in a foreign county she
promptly asked to speak to Mike to and I quote 'tell him to make sure he
take care of much Chile!' Loudly she said this in my ear. I assume in his too for after that there was much 'Yes ma'am...yes ma'am. I will treat her like one of my own.' (He did, see? Undercover gentlemen)
We got the uber, had a lovely chat with our driver and then I busied my self marvelling at the reality that I made it safely. I was in Pittsburgh. I was going to the 2016 NOAH Conference. It's happening.
When
we got to the hotel Mike had a good laugh at me as I approached the
revolving doors as though it were a loaded gun ( they were my first revolving doors don't judge me I've seen every final destination movie ) then taught me the trade
secrets (always push from the right) I pushed. I stared. I marvelled. I believed.
I was so worried I'd run into some issue with the hotel due to my tourist self. It went fine.
To be continued
My trip to the NOAH Conference 2016 was made possible by sponsorship
from: The Writers Association of Grenada, Kallalou Designs, The Office
of the Prime Minister and various good Samaritans who insist upon not
being named.
