Disability and Powerlessness
Adeline life in images ...
At Adeline - Les Cailles - Haïti
Extract from Mwen Pa Fou - The blog of Jonathan Boulet-Groulx
Adeline Aladin is a young woman, just 24 years old. She has two children, three sisters, a strong mother and, for just about a year now, she has had a disability. It’s awkward to call this a “disability” or a “handicap” - she contracted a very high fever soon after giving birth, and from that moment she has been in a terrible state. Unable to walk, to speak, to drink or to eat, she was hospitalized for four months. The costs of that stay wiped out what little savings her family had managed to put aside. I mention this because poverty is a reason for rejection and marginalization here: Even here, in one of the poorest countries on the planet, people connect poverty with fault – if you are poor, it’s because you are at fault in some way. You must bear it, own up to it, and try to redeem yourself from it.
It’s 2:27 a.m. Is it night? Morning? I don’t know any more. Screaming cries woke us up, me and the eight other occupants of this two-room house. The ninth occupant of this thatched-roof house is Adeline, and the screams are coming from her. Her voice bounces off the cement and stone walls, reverberating ever more loudly and desperately. This will go on for an hour, and I say to myself that these are hours in which each second lasts longer than I could ever have imagined. Suggestions erupt from all sides: Make her sleep outside, hit her with a stick, sprinkle water on her face … but her mother, Yfany, holding Adeline tight against her own body, resting against her heart, is unshaken. Patience, fatigue, and love – that’s what will help her tonight. Adeline, cradled in her mother’s arms, finally falls asleep to a Creole tune offered to Jesus, hummed by her mother, a recent convert to Protestantism.
No doubt, if you were to ask if Adeline takes medication, her mother would respond, “Yes – but not today.” Yfany forgot to buy her daughter’s medication at the village market. The fact is, even for a mother as loving and prudent as she is, medication is not a priority. What can you do, in a world where your neighbours have avoided you since your daughter became “sick”? Do you get rid of her by abandoning her at the door of an asylum? Or do you silence her by hitting her with sticks? You might want to consult the ougan (the Voodoo priest) in the neighbouring village, but it costs too much. So you try to see to the needs of the other members of the family, all the while keeping an eye on Adeline. Yfany has recently converted to Protestantism – to save her daughter, she tells us later, when everyone has gone back to sleep:
When I was at the hospital with Adeline, no one paid any attention to us, not to me or to my daughter. Days passed and no one came to see us, and no one explained what was going on. They ran tests on my daughter – I don’t know why they did them – and they never came to tell us the results. All they came with, again and again, were bills for products from the pharmacy, products they needed to be able to continue their tests. Gloves, needles, bandages … and other things I’ve never heard of.
One day, a group of women came to the hospital to visit and comfort people. They spent a lot of time with Adeline and me. They explained to me that perhaps Adeline or someone else in the family had sinned and that God wished to punish us. But they also said that I, together with Adeline, could make up for our family’s sins. I still go to church many times every week. Adeline isn’t strong enough to go yet, but that will happen soon. I pray every day that the Lord will heal my daughter.
But how do you heal something that isn’t an illness? How can you hope to give hope without talking of God, or of mercy? It’s always hot here. And stories get tangled up in one another and everything ends up confused. Even Christopher Columbus, the explorer who found the Island of Hispaniola (Haiti and the Dominican Republic) in 1492, would get lost here. One speaks of God and of Voodoo, of sins and of unhappy fates, as if they are all connected to one another – and of course, if we don’t understand things, we start imagining things. It’s cheaper than a visit to a specialist and it makes for lively conversation.
I raised the issue of poverty at the beginning of this blog, but I haven’t told the whole story. Adeline’s family still lives in a traditional house: the thatched roof, stone and rose-coloured cement walls, the scraps of wood and the cracks are a given. Meals are simple affairs – rice, peas, boiled bananas ... when you can find them. Because the lack of money has more of an impact here than it does elsewhere. The children don’t go to school, but this is not unusual. What transforms this life of poverty into a life of misfortune, even tragedy, is this woman, Adeline – this lovely, smiling, hard-working young woman who has become the burden of an family that is now isolated. Whispers echo in the light of an oil lamp, mutterings about what this victim must have done to deserve her fate. Heads turn on the street when this woman and her daughter walk toward the L’Arche workshop. Is she going to infect other people? Will she have another panic attack in the middle of the day? The curious hope she will; the pious fear she will.
There is a “before” and an “after in this story, and the “after” is certainly the hardest to swallow. Before: a lovely, young woman - popular, courted; mother, neighbour, cousin, sister; this Adeline who probably mocked people different from her – handicapped people, ugly people. After: a woman who limps, who can no longer speak normally, who cries for no reason and who howls her agony in the middle of the night. She has become a stranger to her family; her own children don’t recognize her any more. Steven, the eldest, is barely five years old, and he is, in effect, raising himself, often in nudity and in chaos. The youngest, born last January, was lucky enough to have been taken in by one of Adeline’s sisters, the second in the family, a woman who is blind. You see, I didn’t tell you everything before. This family is doubly unlucky: they must care for two people with disabilities. In Haiti, as in all societies facing senseless levels of poverty, children help the family. They are in effect the “investments” of penniless parents. So if you find that half of your “investment” will never be profitable, well, you panic and talk about a ‘crash’ – except that human beings aren’t abstract numbers but beings who must sometimes struggle just to survive.
It’s Sunday morning, 7:15. Yfany and Adeline’s oldest sister are at church. The sun, which minutes before was nothing more than a pink glow in the sky over Chantal, is beginning its dazzling climb amidst the leaves of the banana trees. We can already smell the odour of burning coal. Everyone is a little tired from the night, and yet only Fara, Adeline’s young sister, is still in bed. Flashing a smile, she tells us, eyes half-closed as she faces the endless cycle:
This is what my sister is like: we still have to find something to eat, regardless. Yes, certainly life has become harder over the past few months. It’s not easy to endure people’s stares. I’m often angry at these people, whom we believed were our friends. However, the sun rises and we are alive, so we resign ourselves to the situation, and we get on with it. We accept it, and we go on. We accept it – and we pray.
