Myths surrounding PWA’s in East Africa

• PWAs are believed to be ghosts, and never die.
• A PWA is a curse from God or dead ancestors.
• Albinism is contagious.
• PWAs are born to women who sleep with a white man or a European ghost.  As a result, the fathers of PWAs often abandon the mother and child.

As I learn more about the plight of Tanzanians with albinism, I feel the term “plight” is not quite harsh enough.  Yes, PWA’s (persons with albinism) lives are filled with dangerous, difficult, and unfortunate situations, but those terms don’t bring enough weight and gravity to the issue.  Let me explain their situation so you can understand what I mean.

Epidemic Rates of Fatal Skin Cancer

• In East Africa, nearly 1 in every 2000 people is affected with albinism.  In North America and Europe, this number is 1 in 20,000.
• These East African PWA’s are very susceptible to skin cancer because of the lack of pigment in their skin.
• Most PWA’s in East Africa do not have proper clothing or sunscreen due to the poor economic conditions surrounding them.
• The life span for a PWA in Tanzania is 30 years.
• Only 2% of PWA’s in Tanzania live beyond the age of 40.
• In contrast, the life expectancy of PWA’s in places of adequate healthcare is nearly the same as the general population.

These statistics are humbling.  It’s amazing that meeting a simple need such as providing sunscreen or proper clothing can increase the life span of a PWA.  It’s not right that needs this small would keep children from living past the age of 30.

Unfortunately, these epidemic rates of skin cancer only touch the surface of the challenges facing PWAs.  Check back again as I will continue to explain the plight of people with albinism in East Africa.

Children with Albinism and the term “Albino”

When I use the term “children with albinism”  I generally get a puzzled look.  The term refers to children who are “albino,” however, the term “albino” is not politically correct and is somewhat insensitive.  Using the term “albino” identifies a person by their disorder, which is bad.  When you use the term “children with albinism (cwa)” or “person with albinism (pwa)” you are identifying them as a person who deals with a disorder, which is far more respectable.  I would encourage you to begin using these terms rather than the standard “albino.”

What is Albinism?

Albinism is a rare, non-contagious, genetically inherited condition that results in the lack of pigmentation in the hair, skin, and eyes, causing vulnerability to the sun and bright light.  Almost all PWAs are visually impaired due to abnormal development of the retina and nerve connections between the eye and brain.

Now you have a basic understanding of what albinism is, and what I mean when I say “children with albinism.”   Keep checking back, as I will be explaining more about the plight of PWA’s in Tanzania, and the Buhangija School.

During the week, I head off to work at Snoball where we’ve created an online platform for event-based micro-donations.  The basic idea is that a lot of people donating a small amount of money can create a large change.   Our mission is to drastically change the way people donate to charities.  It’s a daunting task, but we’re up to the challenge.

I say all that to introduce you to another cause I’m promoting: “Let’s Re-Abolish Slavery.”

“Let’s Re-Abolish Slavery” is a snoball I’ve created to raise money for Not For Sale, a nonprofit that is working to end human-trafficking and modern day slavery.  I was first introduced to Not For Sale when they approached Snoball about creating the Free2Play app for Major League Baseball (see more about this on CNN).  To keep with the theme of baseball, I am donating $0.25 to Not For Sale every time the St. Louis Cardinals win.  Let’s break down what this can mean with some “simple math:”

• If the St. Louis Cardinals win 100 games this year, I will end up donating $25 to Not For Sale.
• According to freetheslaves.net, a person who is trafficked is initially purchased for roughly $90.
• So for every 4 people that donate with me, we could potentially release 1 person from modern day slavery.

Here’s how to donate with me:
Just head over to the “Let’s Re-Abolish Slavery” snoball and click the “Donate Now” button.  You can create an account in about 30 seconds, and can sign in with Facebook.  Super simple!

After joining this snoball with me, please share it with friends and encourage them to give also.  The more we can join together and give, the greater impact we can make!

Want to know more about human-trafficking?  Watch this short video:

Over the last year, some family friends have been working alongside the Buhangija School in Tanzania.  This is a government run school that tends to children with albinism and children with basic vision needs.  Through communications with our friends, I was given the opportunity to donate money to help the school (thank you ABC).  This really was a modest sum of money, but it purchased tables for the students to eat of off (they previously ate off the ground), and also provided new clothing for nearly all of the 200 students at the school.  I was amazed at how far my funds actually went to change these children’s way of life.  It was quite humbling, and even more so, very convicting (I apologize for the Christianese word, but I have no other way to adequately describe it).

In my mind I weighed the value of what I would have purchased with the money (a piece of music equipment) with the impact on these children’s lives.  There really was no comparison.

At that moment I decided to change the way I use my music as a business.  Instead of trying to further myself through selling albums, I decided that I need to sell albums to raise awareness and funds for others.  This is my current headspace.

Right now, I have the opportunity to purchase Braille typewriters for the students at the Buhangija school, so I will be using all the funds from this next album release to do so.

Short story long, this is why I haven’t released the musc yet.  I’m still planning and preparing for what this will look like.  I hope that you’ll stay tuned and join me on this journey!

* Also, I do not want the talk about my donation to come off arrogantly.  I just wanted to share with you an example of how far the American dollar can go when helping others in poorer nations.

Jeremy played some trumpet on one recording, and it took the song to another level.  Trumpet just isn’t expected on a song like this, so it’s a pleasant surprise when it appears.

Neither Jeremy or I have been very critical about the parts we’re recording.  It’s been a very natural, organic process.  We just seem to track for a while, and then look at each other and say “Yeah, I think it’s good.”  It’s been a long time since I’ve been able to record without over analyzing every part. It’s been a freeing experience.

Hopefully day 3 with be just as productive.

Jeremy beautify-ing my song.

Everything I’ve recorded over the past couple of years has been very polished and pop-oriented.  This style of music often leads me to be somewhat abstract and less direct with my lyrics.  I don’t know why, but it just tends to happen that way.  For this new set of songs, I needed honesty both lyrically and musically.  I spent the past two months working hard on this honesty aspect, and I feel like this set of songs is very honest.  I know they are honest because I get pretty embarrassed when listening to them.  To convey this honesty, I really felt like the songs need to be somewhat unpolished.  They need room to breathe and just be.  So onto the recording!

Today, Jeremy and I started with a song called “Flesh & Blood.”  The song deals with the recent death of my grandmother, and tied in with that, the failures in my relationship with her.  The song is a simple acoustic/vocal song with a beautiful cello part written by Jeremy.  It’s bittersweet, which is exactly what I was wanting.  I’m so glad I’m getting to work with Jeremy on these songs.  He’s really bringing them to life, and keeping them raw.

I’m so excited for you all to hear these new songs.

I’ve mentioned this before, but when I was younger I could write songs all day long.  They probably weren’t the best songs in the world, but I sure could write them.  As I’ve gotten older, I find it harder to complete songs.  I can still sit around and come up with melodies and chord progressions until I’m blue in the face, but when it comes time to really say something, I often run into a wall.  This is when I just try to use brute force, and push through.  Sometimes I get a great song.  Most of the time they’re duds.  It’s like what I talked about in my last post.  Songs have to be sincere.  They can’t just be a product, or a set of words and melodies for the sake of a completed song.  To really connect, I have to say something of meaning.  I often joke that words are easy, but meaning is hard.  I believe it’s true.

When I say “will the well run dry?”  I’m really talking about the passions of my heart.  I don’t want to find myself in a place where I’m no longer in touch with what I feel.  Right now, what I feel can sometimes be fuzzy to me.  It’s like I’m trying to listen to a radio station, but I’m mainly getting static.  Every once in a while I get a really clear signal.  Other times, there’s nothing on the dial.

I’m working to fix this by spending more time putting things into my soul.  For me, that means spending time away from technology, meditating on God, reading more, and having focused time with my wife, friends, and family.  To write great songs, I really need to be more in touch with myself.  This year, I’m trying to position myself to be more creative.  I’m proactively doing things (and NOT doing things) that will help me live a more creative life.  I hope it works!

I need to confess that I am extremely insecure when it comes to my music.  I have a number of fears that I need to deal with.  I figured the best way to confront some of these fears is to write about them.  If you’re an artist, I hope these little confessions will help you push past your creative fears also.

Creating a Commodity

One of my primary fears, especially as I’ve started having more success, is that I will slowly sink into creating songs as commodities rather than creating songs because I love them.  This fear is far-reaching because if I ever start creating products, it will be apparent to the listener.  People can sense when something is insincere even if the artist doesn’t realize their own insincerity.

I think a lot of artists have the “sophomore slump”  (releasing a poor selling second album after a good selling first album) because they start trying to create a product.  Other times, they do a full 180, and try not to create a product, which can also be detrimental.  The artist gets out of their headspace.  They start second guessing what was originally a natural process.  They start interjecting imaginary criticisms as they create.  They stop following ideas.  I know this because I do it all the time. I’m trying to get out of it myself.

Now, I’m not so naive as to think that music is not a commodity.  If I’m releasing my music to the masses, I have to treat it as a product to some degree.  Unless I just decide to give it all away for the rest of my life (which may not be that bad of an idea), I have to recognize that I’m running my own business and one of the main products is my music.  I’m trying to fight my urges to treat the creative process as an assembly line producing songs in the same way Henry Ford produced cars.

So what’s the answer to fight it?

I don’t really have the answer.  Right now I’m doing my best to just avoid the idea that I’ll be selling the music.  I’m trying to get back to creating music because I love to create.  I’m finding that if the song makes me emotional as I’m writing it, it will probably do the same to the listener.  I’m focusing on that aspect a lot lately.