03 August 2014

Today I had Leprosy

When I was 20, I went to India to be the project photographer for a children's book about street kids.  I was studying SportsMedicine at the time, but was still secretly very much on the fence between a career in physical rehabilitation and a life of freelance adventures all captured on film (yes . . . film . . . I'm older than I look!).

It was in India that I new I wanted to work in a developing country . . . with populations that are underserved . . . and with people that are at a great risk for being overlooked.  It was in India that I knew for sure I wanted to become an Occupational Therapist . . . because I saw, with my own eyes, the havoc that disease and injury could do to the human body.

Diseases like leprosy.

Only today, I became the one disabled.
Now, before you panic, I don't actually HAVE leprosy . . . that was just the pretend illness I was given before my hands were duct taped into fists to simulate disability to the audience.

B. and I have come to the capital for a training on locally-produced, low-cost devices now available in Niger thanks to a joint project between a foundation, two NGOs and an American university.  For nearly a decade, this project has been working with west Africans who have physical disabilities that significantly hinder their access to clean water and sanitation. 

The NGOs had been working to provide communities in Mali and Niger with clean, safe drinking water as well as building latrines in order to reduce illness and facilitate proper sanitation.   When they went back to see how their efforts had improved the lives of so many, they realized there was a whole sub-population for whom accessibility to these basic human needs was not only still hindered, in some cases it was made more difficult.

So, together with a Water-Sanitation-and-Hygiene expert, these NGOs surveyed the needs of the population, facilitated community discussion where the voices of the disabled community were heard, and helped local artisans develop low-cost, practical technologies that are changing the lives of west Africans with disabilities. 

For three days, B. and I sat in a crowded room surrounded by Nigeriens who are blind, deaf or physically impaired.  We were welcomed as guests of honor by the president of the Nigerien Paralympic Committee.  We were invited to join the National Physiotherapy Association by the head of the organization.  And we were warmly embraced as friends by the community of Nigeriens fighting for their rights as highly capable people for whom access to their environment is more difficult than the rest of us.

To prove this point, the course facilitator--an American engineer who had spent many years in Niger--chose four of us 'able-bodied' folks for a physical demonstration.  Being the only other non-Nigerien in the workshop, I of course was volunteered.

The four of us were taken out of the room and each given our own unique disability.  The woman who interprets for the deaf at the National Assembly and in the Congress lost her right arm (don't worry, it was just tied behind her back).  The director of an NGO that is working towards inclusive development in Niger was blinded . . . I mean, blindfolded.  The third experienced what it's like to walk with one crutch after polio has mangled a leg.  And I got leprosy.

My hands were fisted, covered with a handkerchief and duct taped closed.  Let's just say it was the most inconvenient moment for the tip of my nose to start itching!

Surrounded by those who live daily with the handicaps that were bestowed upon us for the sake of the demonstration, our task was to lift a plastic 25L jerry can that was full of water and fill up a cup that was on the ground.  Then, we had to do the same from a wide-mouth bucket.  Finally, we had to lift a pee-pot and simulate how we would carry it to the latrine and use it to clean ourselves.

The woman with one arm spilled the least amount of water.

As I stood there with nobs for hands, I realized that I still don't know what my patients are going home to after their time in the hospital.  I realized that while I've learned a lot, I'm still quite clueless when it comes to the nuances of everyday private living.  

I stared at the little red cap that had been secured to keep the water from spilling.  The woman with one arm had made it tight.  Placing my duct taped fists on either side, I managed to screw it open.  The lid spun off and shot across the ground.  I looked at it, then looked down where my fingers used to be.  I decided the lid was happy where it was and unessential to the situation at hand, as the demonstration wouldn't be long enough for mosquitos to reproduce in this standing water.

I bent down and tried to put enough pressure through my hands that I could tilt the can forward.  My hands slipped over the wet sides of the plastic.  This wasn't going to be pretty.

Recognizing the need for much more leverage and support, I squatted in my maxidress and bear-hugged that jerry.  I leaned my whole body forward and water began to splash out.  

It missed the cup.

I stood up and repositioned myself and the can a few centimeters further back. 

Same thing.

I tried again.

This time, half the water went in the cup.  Good enough.

I moved on to the bucket.  It was heavier than I could safely lift without drenching myself, so I went again for the tipping method.  Water poured out of the wide brim all over my feet, the bottom of my dress and the floor.  

By default, some of the water made it into the cup, but the bucket was so difficult to manage, I couldn't stop the flow fast enough to keep the cup from overflowing.

Lastly, I had to lift up the little plastic kettle, carry it to the wall where a wooden latrine hole simulation was setup.  

I stared at the kettle. 

I looked again at my hands.  

I cannot confirm nor deny swearing a little in a few different languages under my breath.  

I looked around as my new friends shook their heads knowingly with me . . . it was impossible to manipulate that little kettle without fingers and thumbs.

The whole demonstration was way harder than it looked and it required significantly more time that it should have.  On top of that, there was something horrible about dumping a precious commodity all over the ground.  Women usually walk at least half a kilometer several times a day to draw or pump water from a well . . . a feat that is quite physically taxing in and of itself . . . then schlep it back to their homes.  And here I was, splashing around in it like a five year old.

The audience had a good laugh.  But to be honest, I didn't mind.  This is their reality; my only handicap is being an American living in Nigerien culture . . . and for them, that didn't count (oh trust me, I tried to play that card . . . they saw right through it!). 

When I was in OT school, we had an exercise like this one.  We had to spend some time with a simulated disability . . . mine was field-vision cuts.  I wore special glasses that made it impossible for me to see completely.  I had the top right 25% of my field of vision, that's it.  Let's just say  taking notes, eating lunch and tying my shoes were REALLY difficult.

Only this time, I had an audience . . . laughing at each thing I tried.  But to be honest, they were laughing at me . . . they were laughing because they could identify.  They know, from their everyday lives, how impossible it is to live in Niger with a disability.  They are the very ones fighting stigma, ignorance, isolation and exclusion.  They wrestle with one of the harshest environment on the planet while crawling, hopping, improvising, compensating, navigating physical barriers . . . while still smiling and laughing, pressing on and overcoming!

After the 'one-legged' and the blind man each had their turn, the director of the school for the deaf raised his hand and asked if I would simulate writing.  A pen and paper were produced and I attempted to use my duct taped hands to scribble my name.  It was barely legible.  

As the tape was removed and my fingers were freed, I was patted on the back by my new friends.  We chatted and giggled with each other as we made our way back to our seats.  I sat down and looked at B.  He wasn't smiling any more.  

I questioned him with my expression.  

'Déborah,' he said, 'I now understand the difference between kiné (physical therapy) and ergo (occupational therapy).  And I want to be an ergo!'

I froze.  

'For years now, you've been telling me what we do . . . and you've been showing me.  But today, I understand.'  

I didn't know whether or not to cry or jump for joy . . . so I sat there, blank.  

Then a smile swept across my face.  Because that was why we had come.  

Sure I was hoping for therapy contacts and assistive device ideas . . . but what I was praying for was that B. would have a whole new understanding of what is possible and that he would be inspired to do so much more than give out crutches and teach knee range-of-motion exercises . . . that he would learn that what we do at the hospital is only a starting point, and it is our responsibility to help facilitate our patient's return to function.

And while my 'leprosy' only lasted twenty minutes . . . it inspired in a way that three and a half years of teaching and demonstrating couldn't.

1 comment:

leah said...

Gaahh! I'm flipping out with happiness with you over this!!! This is so cool. I didn't know whether to cry or smile either at that moment in this story where it became clear that a mindset--amd not just skills--had been passed on to your student! Thanks for the hope!!!