01 October 2013

The Power of One

Over the past few weeks, I've made a couple of trips out to see some patients in their homes as well as to visit some other medical centers in the area.  As an Occupational Therapist, one of my favorite things is to see the disabled active in their homes and communities.  What we do in the hospital context is important, but hospital-based care is only a step toward getting a patient home.

Kids who scream when they enter the gym at the hospital, offer smiles when we come to their homes.  The therapy department is a controlled environment, we have tile on the floor and ramp access . . . no ruts in the ground or natural obstacles standing in the way . . . but at home, our patients maneuver around big rocks and livestock (definitely NONE of THAT in the gym!!).

But there's also the communal aspect of life in Niger that we cannot, yet, simulate in our facility.  While our gym is enormous in comparison to the walk-in-closet we started with, it's still only big enough to have two patients (and their familial entourage) tops working at the same time.  And in this non-individualist culture, teaching goes further when everyone is involved.

Yesterday I drove out of Galmi with B., one of the Nigerien hospital administrators, and a Tuareg from the workshop who only speaks Arabic, Tamajeq and Hausa (but he understood my charades smashingly!).  Our objective was to deliver a hoard of donated wheelchairs to certain identified disabled patients who are associated with three medical centers along Main Street.

The first was a small clinic about 15 minutes up the road.  We were bringing them 10 chairs, but only one patient showed up.  A boy of about 12 whose legs were curled up beneath him.  His father placed him the chair, and he sat there, nervous, as the crowd swarmed around him . . . staring.

We talked him through how to self-propel his chair, and encouraged him to give it a try.  But he's was all alone in the sea of watching eyes and it clearly intimidated and embarrassed him.  B. sat down in a second chair and started talking him through it.  This helped, but he was still singled out.

We moved on to the second site.  This time, 9 of the 10 recipients came out . . . but there were no doctors or administrators at the clinic that day, so we were completely on our own.  We followed the same procedure we had all the other times before, the Pastor said a few words, B. gave a demonstration and then the Tuareg repositioned foot rests as we fitted patients in their chairs and attached harnesses when necessary.  Each person received their chair and made their way to the gate, heading home.

Having made record time, we arrived at the third site, a small-city hospital earlier than they were anticipating us.  They said the patients weren't expected for another four hours . . . hey, this is Africa, we're used to things working on a different schedule.

We left for lunch at small 'restaurant' with plastic tables and a menu of Rice and Sauce, Pounded Millet and Sauce, or Rice and Beans and Sauce.  Needless to say, it was delish!

Back at the hospital, we lined up all 40 chairs we had brought them (they're a 'big' hospital after all), filled their tires with air, tied on their cushions, made sure each had its own airpump and wrench and waited.

And waited.

And waited.

Eventually, around the time we were told the patients would show up, two were brought in on the back of a taxi-moto.  Both were lifted off the motorcycle and placed on the ground to crawl through the sand and dirt under the hangar where we had shielded the chairs from the scorching sun.

They joined us in sitting and waiting.  Eventually at 4:30 we decided we'd go ahead and give them their chairs, leave the rest in the care of the hospital staff who could then give them out as they saw fit (based on the protocol we had already shared with them), and be on our way.  But our contact at the hospital refused to take responsibility for the chairs, and insisted that we wait until someone with more authority than he comes to decide what would be done with them.

We agreed to wait another half hour, as we still had an hour to drive on bad dirt roads (they are rebuilding Main Street, and so for the time being, the strip between us and them is a wide path of sand and dirt deviations) and we were running out of sunlight (there are no lights along Main Street . . . and donkey carts don't have reflectors, and many people riding on motorcycles and cars don't turn their lights on, and the semis bounding down the road keep their brights on at all times, and it's pretty common to see one light coming towards you on the far side of the road, which appears to be a motorcycle, but turns out to be a huge truck with it's driver's side headlight out . . . not to mention the cars and trucks broken down in the middle of the road . . . or the kids running into the street at night . . . yeah, no one likes driving in Niger at night!).

During the next hour (yup, he kept pushing back our departure time, because his boss was en route) we had eleven more people come who fit our criteria for receiving a free wheelchair.  And since we were all anxious to get on the road as soon as the r├ęsponsable showed up, we went ahead and fitted everyone in their chairs and asked them to not leave until we give our formal 'presentation'.

Everyone obliged.

Some people arrived via moto, others were carried in by friends and family . . . there was even one 10 year old boy who piggy-backed his 12 year old friend all the way to the hospital!  He arrived sweaty and out of breath, and placed his friend in a wooden chair as we waited for his new wheels to be brought to him.  Impressed with his small frame and the distance he carried his friend, I turned to ask his name, only to find him sprinting away, back toward the hospital gate.  I thought it odd, but thought nothing more of it, until about 10 minutes later, when he returned, huffing and puffing and carrying his friend's brother on his back!

Needless to say I'm still moved by the determination and care this young boy had for his friends . . . his disabled-since-birth friends!  It made think of the time that Jesus was teaching inside a house and a group of guys carried their paralyzed friend up onto the roof, ripped up the ceiling tiles, and lowered him down, interrupting Jesus's sermon!  Now, I've transferred quadriplegics before . . . it's not easy!  But these guys, they schlepped him up to the ROOF!  Talk about love!  Looking at small A-R: The Owner of the Strength of the Back (that's a direct translation of the Hausa nickname I gave him) in his blue and white stripped oversized shirt and three-sizes too-small sweat pants, I wondered if I would be willing to do the same.

Anyway, side-note . . . where were we . . . oh yes, this time, we gave our patients their chairs on arrival.

Since this is a culture of great respect, I anticipated that each one would sit, quietly, hands folded in their laps, waiting for the presentation to start.  And they did.

Well . . . all but one that is.

A gentleman, appearing to be in his early 40's, who has spent his life walking on his hands and the sides of his knees with his feet tucked neatly below him, flung himself into his chair and took off!  He began doing donuts in the sand, refusing help if he got stuck . . . suddenly he was empowered to move faster and more efficiently than he ever could before, and nothing was going to stop him.

He wheeled up to a small cluster of three kids, sitting like angels in their chairs . . . I'm not sure what he said to them, but before I knew it, they were following him.  He began coaching them on the things he had figured out . . . how to recognize where the sand is too deep to self-propel through . . . how to make a tight turn . . .  how to go backwards!

This time, the audience didn't matter . . . these four were in it together, and quickly all but the two oldest patients had joined in.  There was laughter and Hey-Dad!!-Look-At-Me!!'s and kids wiped out from the exhaustion of using muscles they didn't know they had.

This was therapy-in-community.

And it was initiated by one.

There was a place for me and B., but it was in the background.  We were facilitators, but they were participants.  We offered expertise and knowledge, but they provided camaraderie and a shared perspective.  I could suggest tips I've learned as a therapist . . . but my only personal experience of living life in a wheelchair was that afternoon in Grad School when we had to leave the classroom, go down the hall, get on the elevator, exit the building, cross BroadStreet in NorthPhilly and come back, without getting up out of the chair . . . which wasn't too terrible considering there were automatic doors, a ramp and curb cuts.

What I loved most about yesterday, was seeing, first-hand, the necessity of community when it comes to empowering the handicapped.

And really, all it takes is finding that one.


elizabeth said...

i love your stories! thank you for taking the time to share! :)

Leah Long said...

OH my gosh, I loved this. The progression from the poor singled-out kid who never got rolling to the group who did-as-told to the 40-year-old taking off and taking them all with him! THIS IS SO COOL! It's like straight out of a chapter from community & health development books on participatory learning and all that. Thank you! Keep up the hard work. All your sweat, wakeful nights, frustrations and tears (huh? we don't have those!), and even the bout with malaria...God is not wasting one ounce of it. (P.S. I just went through my first bout of malaria this weekend--holy s--t! Now I know why people die from it! I lost 8 pounds in 24 hours and moaned when I wasn't sleeping fitfully. WOW. Always gaining newfound respect for folks here, and this was no exception.)

Deb. said...

Thanks Leah!!

(And yeah, when it comes to malaria, 'holy s--t' is right!! Being sick here in general sucks . . . don't know about you guys next door, but over here we've come to the end of our rains and it's starting to be Mini Hot Season (another month of extreme heat just before it starts to 'cool down' mid November), and now I've got strep! And it seems to be like the chicken pox . . . way worse as an adult!! But maybe it's just 'way worse in Niger' . . . or 'I haven't suffered my whole life and so I have no resilience built up'!! Glad you survived your first malaria . . . welcome to the club!!)