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