Tuesday, June 2, 2009

in which I totally lose it.

Growing up with a mom like mine, I've spent lots of time in the company of mentally and physically handicapped children. She's a pediatric physical therapist who's owned her own practice since before I was born. She's really good at it, and almost always positive about her patients and their futures.

I've always known that handicapped children were special, brave, hardworking little people and I've rarely seen them as very limited in any way. With the right amount of coaxing and determination they could (if not easily) lead happy, healthy, productive lives. And they manage to do it all facing more challenges than the average "abled" person will ever have to deal with in the entirety of their lives.

Yesterday, Betty (who is disabled herself after a childhood illness left her walking on crutches) took us to visit a mother of two twins, one of whom is handicapped. They're both 13, and while there is no Lugandan word for her disability, I can pretty decisively diagnose her with cerebral palsy.

I have known so many children affected with CP. Several of them 1/2 of a set of twins. Many of them are no longer children, but rather adults with jobs and responsibilities. College students cramming for exams and partying with their friends. Spoiled teenagers who are the apple of their daddy's eyes. In short: just like me. Just like you. "Regular", whatever that connotes. Average.

I say all this to try to convey what an utter shock it was for me to enter the courtyard of several mud huts, and be face to face with a 13 year old girl, in a red wheelchair, suffering (a very deliberately chosen word) from cerebral palsy. Immediately, my heart started to race and I could feel a very unfamiliar wetness creep into my eyes.

I am not a crier. The closest I get to tears back at home is when I've had too much to drink and I initiate a pity party in my honor. On this trip, I have stood witness to so many forms of utter poverty, desperate people, struggling mothers and disease ridden bodies that I've become pretty numbed to feeling anything more than compassion and anger.

As Betty introduced me to the girls' mother and described what she was trying to do to help the family, I could feel my composure slipping. By the time we made it into their shabby one room mud hut, I had completely lost it. I had to excuse myself and squat around the corner, weeping into my hands.

It wasn’t that she was so thin. And it wasn’t that she looked like she was maybe 7, instead of 13. It wasn’t her bald head or the flies that congregated by her eyes and nose. It was that in her moans and squeals, I couldn’t decipher anything human. And I knew it wasn’t because she was inhuman, I knew a desire to communicate, to ask for what she wanted, to laugh with her friends and talk back to her mom was contained inside the fragile, bald little girl in the red wheel chair. I knew that inside of her was an adult with responsibilities, and a college student and a spoiled teenager. But I also knew that she had no hope of ever getting to lead a life that was any different from the one she was currently leading. All of the different possibilities and hopes that are contained in a little girl of 13, even the most destitute, were completely, 100% absent in this girl.

Betty confirmed this, when she told me that for kids this disabled in Uganda, their parents –at best – are just trying to keep them alive until they die. Betty gave this little girl less than a year.

Her mom couldn’t afford to buy the protein her daughter needed to stay alive. Which was bad enough, and a familiar enough tale at this point in our trip. But what seemed almost worse to me, was that Betty (a very educated, in the know, advocate for the disabled) didn’t really understand me, when later in the car I tried to describe what services my mom provided for disabled children. Physical therapy? Speech therapy? Cognitive therapy? Therapy? All of these were foreign terms to her, and required lots of explanation to convey their meanings. Parents don’t even talk to these children. They never learn to speak, or communicate. They’re lucky to even see the light of day, as most parents have to lock their children inside while they go to work. This girl, Betty described as “lucky”. Lucky because she has a donated wheelchair and is able to sit outside.

The best these kids can hope for is to get born into enough money so that their parents can afford to put them in an institution. Otherwise, “life” is a word that’s completely off base in describing the future that’s in store for them. They will not lead productive lives. They will not laugh with their friends. They will not go to college. They will not raise families. And they will never have adult responsibilities.

It’s the most upsetting, harrowing and depressing situation I’ve seen here in Africa. And on the rest of our silent car trip down to the Equator, I tearfully pondered possible solutions and came up with nothing.

1 comment:

  1. Erin,
    I had similar experiences in Mexico where I took a course in the '70s. Educating parents is the key . Let's put our heads together and see if we can offer a different conclusion. I would love to offer my background and skills if it can help.
    Love you,