Damages

But if you never try, you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you
ColdPlay, Fix You

Most of us live our lives like a bull in a china shop.  We try our hardest to keep it together.  We do everything we can to leave the shop without breaking everything around us.  But in the end, it's impossible for us to leave without damages.  After all, we're only human.  We damage ourselves.  We damage others.  And others damage us.  As we go through life, the cracks and chips seem to accumulate - leaving us with a shop full of damages.   For the disabled boys at Romaniv, the damages that they've sustained sometimes seems too  overwhelming to bear.  

  

I met a boy last week at Romaniv - someone I hadn't worked with before.  I was asked to do an OT evaluation with him, so I had Angela bring him to the new sensory room.  As she brought him into the room, Angela informed me that he is 18 years old, non-verbal, and has lived in Romaniv for the past 10 years of his life.  "He's usually by himself and never speaks", Angela said.

After timidly walking through the door, he took a few unstable steps and sank to the mat where he sat for the remainder of the evaluation.  He didn't say a word.  He didn't make a noise.  But looking around the room, he gave a brief, but very bright smile.  "In all of my time working here, I've never seen him smile!", said Angela.  

  

Almost immediately, he fixed his attention to something that he had never seen before....his own reflection in the mirror.  Attempting to peel his attention away, I called his name and tried to meet my eyes with his.  But it was no use.  Throughout most of the evaluation, he was lost in the unfamiliar sight of his own image.  

  

Needing more information about him, I asked Angela why he was brought to Romaniv.  "He had a traumatic brain injury when he was two years old, and never recovered.", she replied.  My heart sunk, knowing that his disability could have been overcome with early treatment and access to rehabilitative care.  His body suffered damaged so long ago, but he could have been repaired.

Wanting desperately to interact with him, I continued my unsuccessful attempts to get his attention.  Nearly giving up, I turned to my last resort - something that he rarely experiences in Romaniv.....human contact.  Situating myself directly in front of him, I put one arm around him and tickled him lightly under his chin with the other.  Immediately his eyes met mine.  It was as if the ice of his mind had melted away and he was free to connect with the world around him.  Looking at me, he beamed with a smile as brilliant as the sun.  

  

We're all damaged, it seems.  Some of us more than others.  We carry the damage with us.  But ultimately, it doesn't matter how damaged we are or how much damage we do.  What matters is what we do to fix what we can.   

Impact

"First with the head, then with the heart."
Bryce Courtenay, The Power of One

Impact.  We may not know it, but we experience it every single day of our lives.  In our jobs, in our relationships....we constantly strive to have an impact on someone or something outside of ourselves.  But what does it mean to have impact?  For the international organizations that I consult with, the goal is simple: to have a more effective and lasting impact in the lives of the people with disabilities that they serve.

Yet the more I live and work internationally, the more I find that having such an impact is easier said than done.  Over the past year, I have had to regularly wrestle with the fact that making a lasting impact is a process that requires good planning, enduring patience, and tenacious determination.

At Mission to Ukraine, we are currently planning for more growth and greater impact in the lives of Zhitomir's children and youth with disabilities.  After many days of meetings and discussions, we have created a strategic plan of action for making this impact a reality.  Following our changes in programming, one of our action steps for the Disability Department is to build a Model of Care.  By defining the scope of MTU's treatment, this Model of Care will serve as a fundamental roadmap for delivering effective and lasting rehabilitative care to Ukraine's children and youth with disabilities. 

In order to make a greater impact on the world, a collision must happen. Crash!  Bang!  Smash!  Sometimes, we must thrust ourselves into the heart of the problem with every ounce of strength we have so that the collision will strike a spark.  And, if we're lucky, that spark will set off a flame of impact that will last for a lifetime.

Sensation

The great art of life is sensation - to feel that we exist, even in pain.
Lord Byron

This past February while I was in Ukraine, I was told that one of Mission to Ukraine's US supporters, Helmer, Inc., wanted to organize a fundraising project for Romaniv Orphanage.  Knowing that many of the older boys at Romaniv receive greater amounts of attention from MTU and other volunteers, I suggested targeting the project towards something that could be beneficial for some of the more profoundly disabled boys who are often unable to attend group sessions.  What was concluded: To build a Sensory Room.

Finally, after nearly 7 months of planning, Romaniv's new Sensory Room is starting to take shape.  Last week my physical therapist colleague, Maxim, and I went to Romaniv to start the process.  We had mirrors to hang, floors to sweep, and soft mats to assemble.  There was a lot of work to be done.  

The Before Picture:  

While we were working, the boys began to grow curious about what was going on in the room.  They pointed and shouted from across the way, knowing that something new and exciting was being built just for them.  

In addition to the soft mats and ball pit - specialized lighting, soft music, and aromatherapy were added to the new Sensory Room in the hopes of creating a soothing and captivating sensory experience for the profoundly disabled boys.    

The After Picture:  

Used as a therapeutic approach by providing a multi-sensory experience, the focus of the room is to help Romaniv's profoundly disabled boys purposefully interact with their surroundings.  Although a few finishing touches have yet to be added, a new and innovative sensory experience eagerly awaits the boys of Romaniv.   

Thanks Helmer, Inc.!

Risk

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.

Anais Nin

As I write this, I am sitting in my room - the very same room that I always have when I come to Ukraine.  The past summer has been a whirlwind of travel, swiftly transforming into a personal crusade: one month in Ukraine, one month in Africa, and now another two months back in Ukraine - all in the hopes of helping organizations better serve children with disabilities.  As I march forward on my crusade - leaving Africa behind and pressing on once again to Ukraine - I find that bits and pieces of my past travels have been seared into my heart, creating scars that remind me why I am here in the first place.

During my trip to Kenya last month, one organization made such a mark in my mind: The Heshima Children's Center in Nairobi, Kenya.  It is no coincidence that the Heshima center was named after the Swahili word for "Dignity" - and it took only moments for me to discover that Heshima is at the forefront of the battle for Kenya's children with special needs.

In Kenya, children with disabilities are a distinctly marginalized population.  Drenched in shame and  often suspected of witchcraft, disabled children and their families are outcasts in every sense of the word.  Families become shaken to their core and the very act of living becomes a difficult struggle.  Not only are these children hidden away in homes - but reports have also shown that Kenya's disabled children are likely to experience debilitating forms of neglect including near-starvation, extreme deprivation, highly unhygienic living conditions, and complete abandonment (1).  In the war of disability rights, it seems that Kenya is losing.

But for places like Heshima Children's Center - the risk is worth the fight for bringing dignity to such children.  Walking onto the grounds of the center, I was immediately amazed at the bustle of activity.  New construction projects covered the grounds and buildings were being constructed in anticipation of reaching and serving more children with disabilities.  With a swift glance around, I noticed that many men were working hard under the afternoon sun.  Yet - to my astonishment - when I stopped to look again, I noticed that two of these workers were teenage boys with mental and physical disabilities.  

"Yes, they are our boys", said our guide.  "They have been with us for many years.  They are older now so we give them jobs to do.  Working make them happy - they can be just like all the other men...using their hands to bring growth to our organization."  I was astonished.  Here were two boys with disabilities - one with Cerebral Palsy, the other with an Intellectual Disability - living in the heart of Kenya...yet, both were able to fully participate in the construction project alongside able-bodied men.  Just when I thought the outcome looked bleak for Kenya, I was inspired by this beautiful picture of what services could and should be for the disabled.  

When it comes to fighting a battle, Risk can be a tricky thing.  Sometimes it motivates us to put everything on the line, because we can't stand to think of living with the alternative.  It can also deceive us into thinking that our choice may not be worth the fight. Yet the funny thing is: there is always a risk.  And we never find out just how far we can go until we push that risk to the brink.  Places such as Heshima Children's Center and their efforts toward creating dignifying opportunities for disabled children continue to remind me that the risk is well worth taking.

(1) Terre de Hommes. 2007. Hidden Shame: Violence against children with disabilities in East Africa. Retrieved September 10, 2012, from http://www2.ohchr.org/english/issues/women/docs/VAWHRC20/OtherEntities/TerreDesHommes.pdf

Warm Heart of Africa

If I know a song of Africa,
of the giraffe and the African new moon lying on her back,
of the plows in the fields,
and the sweaty faces of the coffee pickers,
Does Africa know a song of me?
- Karen Blixen

The day has finally come for me to spread open and explore the other hidden corners of the world that shelter children with disabilities.  Filled with resolve and a pinch of uncertainty, I have come to find myself standing in the warm heart of Africa - in a world unlike anything I have ever experienced.  

  

Several months ago, a chance email to an organization called Choose to Invest quickly developed into a  planned trip to Nairobi, Kenya where their Kimbilio Project is being planted.  Born out of a desire to provide Kenya's abandoned disabled children with a place of refuge, nurture and care, the Kimbilio Project aims to build a unique living facility that lifts such children out of the mire.  Additionally, another initiative of Kimbilio is rooted in providing partnering orphanages with the support and training they need to better serve their own abandoned children.

  

With the collaboration of Choose to Invest, I had the honor of visiting and serving in one of Kimbilio's partnering orphanages called Happy Life Children's Home.  Standing as a beacon in the midst of crumbling abandon, Happy Life openly accepts infants and young children that are discarded from their mothers.  Oftentimes, these children are found in the slums of Nairobi, swaddled in dirty wet blankets and wrapped in plastic bags.  Discovered outside of hospitals, city buses, and ditches - the children of Happy Life are taken in and given new hope.  

Yet, despite the efforts of Happy Life, the need is great and the workers are few.  Crowded rooms crammed wall-to-wall with cribs and crying babies has become the standard for Happy Life.  The older children share their twin-sized beds with one, sometimes two other children.  While the caretakers hustle from crib to crib, changing diapers and feeding bottles, the other babies are left to sit idle in their cribs and wait for their turn to be cradled - if only for just a few short moments.  As a result, opportunities for healthy developmental growth are missed every day.

  

On my second day at Happy Life, I held a brief and simple training session for the leaders and head nurses.  I went over some practical activities they could do with the babies to support their development as well as some simple recommendations of ways they could re-structure their time and resources to create more interaction with the children.  Using one of their toddlers as an example, I showed them simple methods for helping the children learn new skills such as sitting up, rolling over, and holding their head up.  To our amazement, in the middle of the session, our model baby named Abidah instinctively sat up by himself.  "I've never seen him do that before!", said Rosemary, one of the nurses.  "He learned how to sit up just by playing with him - I can't believe it!!!"  Suddenly there was a charge of energy in the room - it was as if lights had been switched on within their very eyes.  

  

I don't know if I will ever step through the gates of Happy Life again - or if I will ever hold little Abidah close and tell him that he is loved.  And I will never know the actual impact of that day. But walking away from that place - nestled in the warm heart of Africa - I walked away knowing that I had left behind something profound.  I had left behind tools of knowledge that will forever change how the nurses and staff care for these precious, abandoned children of Africa.   

Pricetags

"Freedom is never dear at any price.  It is the breath of life.  What would a man not pay for living?"

Mahatma Gandhi

"What do you do when a child comes up to you and starts crying?"  It was a curious question - one that I wasn't prepared to answer in the middle of a training meeting with Angela, the only nurse and teacher willing enough to work with the boys of Romaniv.  She went on, "I have found that, through the day, many of the boys cry without any reason at all - and I never know what to do."  

  

No answer that I could give to Angela would even begin to scratch the surface of the seemingly insurmountable issues that she is facing.  And, if we scratch too deep for the answer, we will find that the societal reality that children with disabilities around the world live with every day is more shocking and terrible than we think.    

  
In Ukraine, when a child under the age of 4 years is abandoned by their parents - with a disability or without - they are brought to a facility called a "baby house".  Some of the baby houses of Ukraine are well-kept and well-run, providing quality services and a nurturing environment.  But, unfortunately, such facilities are few and far between.  Too often, these facilities are grossly understaffed and overcrowded with room after room lined with cribs.  It is said that walking the halls of such facilities is eerily quiet.  Babies quickly learn not to cry - because, what's the use?  No one will come.  It becomes ingrained in their behavioral DNA that they are unwanted and worth nothing.    

As these babies grow older, this DNA of worthlessness begins to seep deeper into their hearts.  Children with disabilities are sent into a dizzying system of disability institutions at the age of just 4 years.  Evaluated by state officials, children are sent to live in institutions according to the level of disability they are given by the government.  Children with only mild disabilities are sent to facilities with teachers and relatively positive outcomes.  But those children who are deemed "unteachable" are herded into hidden places where the goal is simple: to keep them alive.   

It's hard to imagine such a measly price tag put on a human life....on children who are born with air in their lungs and blood in their veins.  Even the most profoundly disabled human beings have fingerprints and elbows.  Even those that are blind and bed-ridden have eyelashes and earlobes.  Yet the price put on their heads by their own people is meager.    

  
Sometimes I stop and turn my mind to Romaniv and to the boys who suddenly cry without reason.  And as I reflect on Angela's question, the answer stares straight back at me with such dutiful tenacity that I have nothing left to do but press on.  Press on to create support services that will invest in teaching these people the skills they need to be part of society.  Press on to build communities that recognize that people with disabilities have a value and merit on their price tags.


And as I answer this question for myself, I will ask you the same:


What price tag do you put on people with disabilities?