This cyber space will be refurbished, rethaught, and will come back in september renewed and more complete.

The same, but different. Should you have any ideas, suggestions, personnal thoughts about how this project could come back, don't hesitate!

See you in september,

Jonathan

But I want to say that, in a way, it’s not very different where we live. Our countries are so developed that the government guarantees some measure of financial aid to handicapped people or their families. So here we find other pretexts to not include what’s different, as if it were some kind of invisible norm.  Evidently, here we have services that are very advanced, financial assistance (even though it is becoming harder and harder to find) for social projects, modern homes where we enjoy television and weekly outings.

But let’s talk about inclusion. How do we make it happen? What value does society assign to people affected by intellectual or motor disabilities?

The truth is that it’s easer to find an excuse than to open our hearts and lives to difference. I know this is true: In secondary school, I was the first one to make excuses when I was late ... !

In under-developed countries, poverty offers a pretext for the exclusion of difference. In developed countries, it is actually the affluence of the government that allows people to not do much—I pay taxes; the government gives money to disabled people; I think it all works quite well.

But the look in their eyes—that doesn’t change. And that’s where the real difference can be seen.

I visited a very small family the other day, a mother and her son. Take a look at his photo, below, and meet Nicolas. 

Nicolas and his mother live alone, in a house paid for by her niece who lives in the US. She works every day, and since her son cannot move from the bed, she shuts and locks the door, opens a window, and leaves the house for several hours. The house is nice; it has a garden behind it, flowers, proper walls, no garbage on the floor. There are crucifixes everywhere on the walls and plantain bananas on the floor.

Nicolas is one of the most welcoming and patient people I know. He moves slowly, but he smiles all the time. Nicolas is happy; I’m certain of it. In fact, the situation isn’t really bad. They eat every day and laugh together; each of them has a room (actually, mom sleeps in the kitchen in a beautiful hammock made of multi-coloured cords), and the neighbourhood is almost tranquil. I say almost because there are rumblings that a new gang of Maras has moved into the neighbourhood, behind their house. (The Maras are street gangs, often made up of young people known for their violence. In short, another group excluded from society....)

As I said, their situation isn’t really that terrible, but the situation of the country is a different matter. During the interview, Nicolas’ mother allowed only a few tears to escape during the three hours we spent with her. The question I asked was simple; the response simpler still.

I wanted to know how she saw her son’s future.

“I don’t see a future for my son. I simply hope we are lucky enough that he dies before I do....”

This wasn’t an angry complaint; nor was it a plea for anything. She said it with such grief, in such an anguish of love. She knows very well that no one will take care of Nicolas. That’s just the way it is. She is there; so is he; so they live together and she takes care of him, and he makes her smile, live, he makes her love the daily routine. It requires a great deal of patience to take care of Nicolas. And it takes a great deal of patience on Nicolas’ part to tell his mother he loves her, without words.

So, here I am in Honduras. For three weeks. You know, I already love this place. After driving for several hours, to get to the Choluteca community in the southern part of the country, I realize that every house has a hammock. So it’s an ideal place! I tell myself this while gazing at the river, the Rio de Choluteca.

I have a lot to do in only a few days, starting with learning Spanish! But that’s okay – I brought my handy pocket reference dictionary.

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Yerson came to get me at the airport, with Miriam and the driver, Don Martin. You know, there’s something amazing about coming out of an airport, getting through customs without being searched, and seeing a lovely white piece of paper, no bigger than a piece of printer paper, waiting in the hands of a friend.

In big black letters,

EL ARCA
JONATHAN

It warmed my heart and de-stressed my brain!
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I said to myself—leaving the two-room house full of nothing—that, in truth, the whole world is searching for a normal life.

I had been at Ronal and his grandmother’s house. He has always lived with her. They don’t have much, these two, but what they have, they share. Smiles, above all.

And I find that beautiful, the ability to share a smile, a laugh, joy, happiness. Even in the worst of living situations, when your only family is your grandmother, 98 years old, or your 24-year-old grandson, who has an intellectual disability. In fact, a little bird tells me that this is not the worst of living situations at all. There are people who spend their entire lives without ever having learned to share a smile.

It’s hot this afternoon. And I think the little bird is right.

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The world is made up of communities of people trying desperately to simply live.

Deep down, what the whole world is looking for is a normal life.

And let me say that I hope the communities of the Ivory Coast are all right, as well as those of Japan and New Zealand. And those of Egypt, Palestine, Israel, and Mexico ... We are all searching, seeking—whether we have an intellectual disability or not, a physical handicap or not, easy or difficult days—we are all searching for a normal life.

OK, I confess, I had no idea, in truth, what the title of “Μiss Anayiz” really meant – even now, I’m still not sure I understand. But when a young man like me meets a celebrity, a “Miss Something” a woman about whom Facebook says only good things – I have to admit I was a bit nervous about it.

Marie Flore. She extended her hand; I did the same. I felt a bit stupid – I should have dried my hand first because it was damp. She had arrived before me and was sitting in a shaded, quiet corner of the Quartier Latin, a restaurant I love especially for its signature ravioli, and its eggs benedict on Sunday morning. Marie Flore, winner of the Miss Anayiz 2010 competition, is smiling and unpretentious. She has a small nervous tic, a little habit that comes out when she’s nervous, I expect. I have to say that I didn’t waste any time; I brought my camera out very quickly. What’s the habit, you ask? – it’s hard to capture with a camera. She plays with her straw. Stirs it around in her glass, full of ice, pulls it out, pushes it, folds it up. Not very photogenic, as a nervous habit.

So, Miss Anayiz is not perfect. I find that reassuring. Because at first glance she might seem perfect. Young, pretty, tall, intelligent, and the new spokesperson for the Secretariat of State for the Integration of Handicapped Persons (SEIPH). All of this while being a university student who loves to read a lot (scholarly reading), and cultivating her image. It’s in these meetings that I realize the extent of my imperfections ...!

In this interview, we don’t talk much about her private life. The only thing that really interests us, her as much as me, is Haitian society today – and in relation to this society, we talk non-stop about the most marginalized, from the victims of January 12, to the children abandoned at the general hospital in Port-au-Prince, to the situation of young women in Haitian society. A name will come up several times during the interview: Jean-Marie.

When she was very young, Marie Flore’s father, a businessman from Gonaives, took her to the hospital to meet handicapped children, including a child named Jean-Marie.

- The first time, I was so afraid that I took off! That lasted several days; in fact, I think it took about two weeks before I started to feel at ease.

The family eventually adopted Jean-Marie, because it was the right thing to do. It was that simple.

- I often went for walks with Jean-Marie, in the neighbourhood. People looked at us – ah! Their eyes spoke volumes!

Then she burst into a young girl’s laugh – gentle, ringing.

When I ask her about the state of handicapped people before the earthquake, she responds quickly:

- Here, people don’t see the person; they only see the handicap. To have a handicapped child in your house is a problem. To see that a child, or even an adult, who might have some kind of a deformity, is not acceptable. It’s not that they are afraid, but they have never been trained to deal with a situation like this.

And Jean-Marie?

- Sure, I had difficulty with it, in the beginning. But one day, I realized that he was a child like any other, just with different needs.

How old were you when you realized that?

Ha! There was a long pause in the interview. I was a bit disconcerted. Me - at 12 years old, I was starting to skateboard, and I dreamed of being a policeman. I don’t remember being touched by the issue of intellectual disabilities until I was about 20. Indeed, I realize that Marie Flore is a very special woman.

We resume the interview.

Since the catastrophe of January 12, 2010, do you believe that the situation, or at least people’s perspectives, have changed?

- Dare I say that people have become more cynical? Now, it’s truly everyone for himself or herself. Before, there was the social network of the family, neighbours, friends. Today when everyone is in the street, homeless, looking in vain for rental accommodation (she herself had to leave her home because the landlord decided to rent it out to foreigners at a much higher rent), the needs of handicapped people fall way behind in the priorities of Haitians.

- After January 12, if you are handicapped, you absolutely have to have internal strength in order to survive.

Her tone of voice changes ... Marie Flore plays with the straw floating in her glass of lemonade. Her eyes fixed on the ground, she explains herself:

- I met a mother and her young daughter. She was explaining how gifted her daughter was at school, that she had very good marks. Then, in a matter of a few seconds, everything caved in - a wall hit the young girl on the head and buried her in the debris. Now completely handicapped, she can no longer sit, eat, or dress herself. And the mother said to me: Chery'm si mwen te konn sa mwen pa tap soti'l anba dekòm. (My dear, if I had known, I wouldn’t have pulled her out of the ashes.)

I don’t know about you, but that knocked me for a loop. In fact, it’s true that today almost every Haitian has family members who have become handicapped. There are therefore more handicapped people in the country than ever before, but Haitians don’t have the patience to help them overcome the obstacles that face them, even less to reintegrate them in daily life.

I ask Miss Anayiz, who has become a little quieter, a little sadder, if the mother of the young girl who became handicapped as a result of the earthquake no longer loves her daughter.

She looks me straight in the eyes and responds:

- It isn’t that she no longer loves her daughter, but she had such a vivid and precious image of her daughter, who walked to school by herself, who helped her with kitchen chores – you know, here we teach children at a very young age to help out around the house, especially if you are a young girl. You are given responsibilities from a very young age. And if, literally overnight, you find yourself with a little girl in the house whom you have to wash, dress, take to the toilet, feed – you can understand very well that it’s not about love, it’s about survival.

For a moment, Marie Flore and I fasten on to an image of the young girl and the love her mother will always have for her. It was like offering a silent prayer that the little girl would not be abandoned and left to fend for herself in a few months.

I keep going, because the images are churning around in my head, and I ask her if she suffered socially herself, because she befriended a person who is handicapped when she was young.

- I went for a walk every day with Jean-Marie ... I realized later that a lot of my friends at the time ended up distancing themselves from me.

I gather that it was difficult, but her sardonic smile cuts off that train of thought very quickly.
- Ha, ha - I quickly realized that the people who distanced themselves from me would never be important in my life in any case. So, in a way, my encounter with Jean-Marie was beneficial from several points of view.

All the independence of a stubborn young woman suddenly resounds, as Miss Anayiz flashes her famous smile.

I mentioned a little earlier that she is not perfect. Nevertheless, I had the opportunity, in this 20-minute interview, to discover a student, a militant, an ambitious woman – not for herself, but for the cause she has decided to support. And when you ask her why she agreed to become the spokesperson for a cause that is so urgent and yet so little known in Haiti, she responds with the nonchalant air of someone telling you something obvious:

- I have been close to the world of handicapped people for several years, so it’s normal that I would do my best to explain the reality of the life of handicapped people in Haiti to my fellow citizens. But before, I was involved in this work out of personal interest and because I enjoyed it. Today, I feel responsible and obliged to act. It’s simply the thing that has to be done, no? Personally, I believe that I inhabit a place, and that it’s my responsibility to make that place better. And Haiti, despite appearances – well, frankly I don’t want to live anywhere else. So, I have to make it better!

And the smile? Now, I’m wearing it!

J

So I beg your pardon, and I send you my thanks as well. Thank you for returning to this blog, to this web page that bears the name I chose for it. Mwen Pa Fou. And so that I don’t make this same mistake again, I will produce a slice of life every week – though it might be a very little slice – so that I don’t fail in my duty.

I’ve been reading a newspaper from about a month ago so that I can pick up where I left off. The Courrier International, which I love, published a “2011 Agenda” in its January 6-12 edition: “The major diplomatic and electoral meetings, but also the biggest cultural, religious, and sporting events, scheduled for this year.” Here are some of the significant dates:

• February 4 was World Cancer Day.

•  March 8 is International Women’s Day. I’ll write a love letter to my mom, who is currently in Africa (I get the impression that people in our family like to travel!)

• On March 20, I’ll greet the International Day of the Francophonie with a big smile. The following day, I will celebrate the International Day of Poetry, organized by UNESCO, by reading from the works of (Haitian writer) Franketienne.

• April 4 is International Day for Mine Awareness and Assistance in Mine Action. I will take a moment to remember the innumerable victims of human military intelligence.

• April 29, I will chuckle over the wedding of the grandson of our Queen.

• May 1, I will laze around in a hammock, celebrating International Workers’ Day.

• May 3, International Day for Press Freedom, I will think about all the murdered journalists around the world, killed simply because they wanted to tell the truth.

• On May 10, the anniversary of the abolition of slavery in France will catch my attention (and I will smile at the idea that it is in large measure thanks to countries like Haiti, free since 1804, that, today, we understand the meaning of a slave revolt!)

• Jumping ahead to August, the 16th to be exact, we come to International Youth Day in Madrid.

• In September, the 17th has been designated as Heritage Day in a number of European countries.

• In October (the date hasn’t been set yet) the famous Nobel prizes will be awarded in the following disciplines: Medicine, physics, chemistry, economics, and literature. The Nobel Peace Prize will also be awarded, even though it isn’t yet a university discipline. (Have you ever seen a diploma in Peace? Not that it wouldn’t be useful, but I imagine the curriculum would be very difficult to grade!)

• And December 1st is International AIDS Day.

And that’s it. The list of “Days” for this and that stops there.

I realized today that our handicap, in this cause we hold dear, is that we haven’t captivated the media universe or the collective imagination enough to make it onto this list of important dates for the year. It is a failure that is ours. Mine as well as yours. Because the battle against AIDS is also, and above all, a fight against the discrimination suffered by those who are affected by it. Just as International Women’s day only exists to remind us that women are still, because of the most incredible human stupidity, treated as inferiors in too many societies (not to suggest, at the risk of being polemical, in all ...?)

We struggle daily, in Haiti as elsewhere, to change the way the masses look at human fragility. Fragility that leads us right back to the solidarity between brothers and sisters. To open oneself to the Other, is above all, to accept the difference of the Other, whatever that might be, and to recognize that that difference is naturally and invisibly linked to our own difference. That different beings make up the human race, which itself is nothing other than a  big soup of people looking at each other. 

December 3rd is the International Day of Persons with Disabilities. The fact that a newspaper like the Courrier International doesn’t include it on its list of important dates for the year says a lot about the work we still need to accomplish to make our way into the collective imagination, to become a part of the world of ideas. And that gives me a push to become more serious about this blog—more regular in sending my dispatches.

Have a good week,

J