That’s how much Ecuador’s Vice-President, Lenin Moreno, has offered families with special needs’ children in assistance each month. It’s the equivalent to a month’s salary at minimum wage, which is no small fee. My bodyguard Juan has a special needs’ son, D. (age 3), who still does not walk or talk at all. Over the past few weeks I’ve been filming Juan as he attempts to apply for this assistance. Through the process I’ve learned just how difficult it is to be a poor Ecuadorian, dependent on the public health care system for all services. But not only have we been traveling from one public hospital and clinic to another, we’ve also visited several government offices to figure out how one even applies for this special assistance. Clear, accurate, and direct information seems hard to come by here. Juan had seen the new assistance being advertised on the nightly news, but once we arrived at the supposedly correct government office, the employees knew very little about the actual details of the program.
For Juan and his partner K., who works as a prostitute while he looks after their three children, $240 would make a tremendous difference in their standard of living. They barely scrape by each day, sometimes forced to go to bed and wake-up hungry. The days that Juan works as my bodyguard, I pay for his lunch and for the lunches of his children, which comes to $5.00 daily. The assistance Vice-President Moreno offers is made exactly for families like K. and Javier because Javier cannot seek employment since his primary job is to care for their disabled son (who needs to be watched 24 hours a day). With one partner out of the work force, they must depend on K.’s meager salary to support a family of five. It is extremely difficult considering K. usually only scores an average of 2 puntos (encounters) daily, earning $5.00 for each one.
The catch to receiving the assistance is that the family has to prove that their child is a certain “percentage” disabled. I’m not sure how they quantify it, but the child must be at least “75%” disabled. To me such quantifications seem ridiculous because they are based on random (fairly subjective) evaluations from doctors. What if the child is “merely” blind, and receives a lower disability percentage but the family doesn’t have the resources to send him/her to a special school and therefore must stay home with him/her? What if a doctor misdiagnoses the percentage of an autistic child who is highly adept in some cognitive areas while severely impaired in others? What if a family has an emotionally disturbed child who needs special psychiatric care but has long periods of stability, in which he/she may not need to be watched at all times? (i.e. perhaps both parents might be able to work during these periods of stability, but might not be able to maintain jobs if their child has frequent moments of crises). There are a million more scenarios that make me skeptical of the quantification of these children’s disabilities. An attempt to standardize all the hundreds of possible disabilities a child could have in order to make a vast national comparison is an archaic gesture, reminiscent of French philosopher Foucault’s theories of state power, normalization and vigilance.
I’m terrified that somehow D. won’t “make the cut.” What if a doctor sees him as decides that he is “normal enough” for Juan and K. to not receive financial aid. What if an ignorant doctor decides that D.’s severe cognitive delays are just that, something that he’ll “grow out of?” Just trying to get an evaluation has been a nightmare process. Juan and I have attempted to have D. evaluated at three different hospitals or public clinics and each of them has sent him away, requesting more paperwork from some obscure government office. It has been a Kafkaesque maze of bureaucracy with no end in sight. To even get an appointment at one of the public hospitals most people spend the night sleeping at its doors, to line up in order to gain entrance in the morning. At 6:00am the hospital administrators start handing out appointments for the day. Since there are a finite number, only the first part of the line gains entrance. The rest will arrive later that evening to spend the night again, hoping to get an earlier spot for the next day. Once inside the hospital, people wait in lines sitting on the floor, in giant spirals. I’ve never seen anything like it. The lines go around and around the wards in huge circles. People literally spend the entire day waiting; when they finally see the doctor (if they’re lucky) he/she ushers them in and out of his office within five minutes because he/she has so many people to attend.
For someone like Juan with a special needs child, it is not possible to wait in such long lines. For any child it is torture, but for D. it feels especially tortuous because he gets overwhelmed very easily. He hates being in tight spaces with lots of crowds and quickly starts to tantrum, to the point that we’ve had to leave the hospital and lose our turn for the day. We finally decided to go to a local clinic that charges $5 a visit instead of going to the public hospital, because there would be less people. Unfortunately, even in this private clinic D. was exposed to long lines and cramped spaces. Even here people are not given a set appointment and they must wait in long lines. D. ended up having a fit, much to everyone else’s chagrin and to make matters worse, the doctor arrived 2 hours late. When we finally saw the neurologist for an evaluation, he turned us away saying that D. was too out of control to examine—that we would have to come back another day when he was calmer.
I kept my mouth shut, but I was fuming inside. Poor D. couldn’t help but get upset while waiting for a doctor who nonchalantly arrived 2 hours late. Even I was beginning to get tense, bored and irritable. I couldn’t believe this doctor wouldn’t give D. 10 minutes to calm down in his office. Why didn’t he realize that not all of his patients will be easy to deal with—wouldn’t such a realization come with the territory of being a doctor? The worst part about having the doctor turn us away meant that Juan would have to pay another $5 in an attempt to see him again. What will make D. any calmer next week when we have to wait in line for hours? I’m dubious that the doctor will treat him then either. It’s certainly not D.’s fault that he reacted in such a way—if only he could go to the expensive private Metropolitan Hospital, where I receive treatment, where one is given a set appointment, with no waiting in lines—and where the medical care is first-rate, where D. would be guaranteed to receive a fair and accurate evaluation.
I was also shocked by Juan’s reaction. He expressed neither surprise, nor irritation that the doctor turned us away. He accepted it without question. When we left the building I asked him why he didn’t defend himself. He said it hadn’t occurred to him. It made me realize the dramatic difference in our social positions. Juan treats doctors with reverence and views them as an ultimate authority. He would never have the nerve to question a doctor, given his low social standing. As he said, it wouldn’t even occur to him. For me, as the daughter of a doctor, I have a different type of relationship with these authority figures. Naturally I respect doctors, but with my father as one, I feel comfortable asking questions and confronting them when needed. Indeed, I feel empowered enough to question or confront any authority figure, due to the social position I occupy. I couldn’t believe Juan didn’t complain, but it gave me such insight into how it must be to belong to a marginalized, disempowered social group. I’m just worried that due to all the obstacles that accompany being a member of Ecuador’s lower class that somehow we won’t get the evaluation D. requires for Juan and K. to receive the financial assistance they so desperately need.