A Special Familiy: A Nicaraguan Beginning

Many organizations in many countries work with individuals with special needs, however I have yet to come in contact with an organization that fulfills this goal from a community perspective more so than Familias Especiales [Special Families] in Matagalpa, Nicaragua. With practicality, comprehensiveness, and above all the community's needs informing its approach, the organization, over the past 2 decades, has learned that the driving force behind the services they provide has to be a dedicated commitment to listening.

Accessible playground equipment at Familias Especiales

From the beginning, listening to the families with individuals with special needs became an integral tool in responding to the factors influencing these families. In having an open conversation with these families in the the Matagalpa community, the organization began to discover that the families were being affected by factors that medical-oriented therapy could not solve. Factors such as, stigma for people with disabilities, lack of accessibility to public places, caregiver burden on already poor families...etc. These are what occupational justice theory names structural factors as well as the interaction between contextual and structural factors.

In the therapy room

Structural factors are the large cultural, economic, social, and political systems that create the structure on which a society is built. Contextual factors are the characteristics of an individual or population that must be viewed through the lens of the structural factor. For example, gender norms (socially expected behavior for gender identities) are a social system to which a majority of a population subscribes, thus a structural factor. Therefore, gender identity (a contextual factor determined by the individual) must be viewed through the contemporary lens of the relevant and contextual gender norms. More clearly, being female in the United States and being female in Nicaragua are two very different experiences even though the gender is the same because the gender norms of each country differ. The structural factors differ therefore the experience and effects of the contextual factor differ.

Accessible playground equipment

In the same way, disability or special needs, a contextual factor, affects individuals and families differently based on structural factors.  These factors could include: stigma or negative views of people with disabilities and their families, medical, therapeutic, economic, and nutritional resources available to individuals and families with special needs, opportunities for social integration and participation for those individuals and families, or strains on the family due to special needs. Understanding the interplay between structural and contextual factors is a complicated and intricate process but it allows a more holistic and comprehensive approach to overcoming obstacles that face an individual, community, or population.

All programs of Familias Especiales

Familias Especiales  demonstrates not only an understanding of this concept but also a dedication to improving structural factors affecting the families with which they work. For that reason, Familias Especiales takes the sunflower as its logo, a flower with many petals nourishing one plant. Familias Especiales has over 20 programs that seek to nourish one community from a variety of angles. Yes, this organization focuses on families of people with special needs but in working to support this portion of the population they have found ways to support the entire city of Matagalpa, including the special families.

For example the first big project the organization undertook was to build an accessible park in Matagalpa that both children with special needs and typical children could enjoy. This serves multiple purposes, however the two primary are firstly to provide a park for children with special needs and secondly to create a space for children and families of all types to come together, play, and interact as a community. This not only provides the occupation of play for many children, but it also uses occupation to facilitate a structural and social change in the community. Increased interaction with people with special needs will increase acceptance and integration in the community as a whole.

Playground

Today, Familias Especiales provides programs from horse therapy for children with special needs to a yogurt factory in which the mothers of youth with special needs work and earn a living while also providing a healthy nutritional alternative to the greater community. The organization provides psychological, psychiatric, and medical support as well as therapy on site and within homes. They are currently working to create an "integrated therapy" that will teach mothers therapeutic techniques to use when a therapist is unavailable. Social workers also organize mother leaders in various zones throughout the community to spearhead community organizing and communication. Familias Especiales provides employment to young people with special needs by running a recycling operation, special art programs, piñata making, gardening, a small eatery, and a variety of other jobs within the organization. They also have a wheelchair workshop that assembles, repairs, and performs maintenance on over one thousand wheelchairs per year that are then donated to the community. They have a variety of other programs that I did not get a chance to see in action. One needs to spend at least a couple of weeks or more with this organization to fully understand all of its many programs and how comprehensively it approaches family and community-oriented intervention.

Wheelchair Workshop

The passionate administration, social workers, therapists, workers, and families of Familias Especiales truly exemplify an effective model for integrated community-oriented therapy and social change, using play, work, social engagement, and countless other occupations to provide therapeutic change to youth with special needs and structural change to the community surrounding them and their families.

Recycling Operation

Although this organization is utilizing occupation to achieve its goals, it has severe difficulty finding occupational or physical therapists willing to work long term with them as well as understand their community-oriented approach. This obstacle limits the progress and success of the organization.

Piñata Making

Nevertheless, the persevering staff and families continue working to improve Matagalpa and the lives of all the people within it, especially
those with special needs. They support from all angles, attempting to recognize and work with all the factors affecting the special families. Their holistic and comprehensive practice of integrated community therapy has been an unprecedented model in my experience as an occupational therapy student. I hope to see more organizations like this one begin to emerge within the formal and domestic structures of all countries because the model and practice used by Familias Especiales  is both inspiring and effective.

Thinking of Guatemala

Guatemala was a long road, but it was a wonderful, colorful, and exciting adventure.

We learned about the good, the bad, and the ugly.

We  tasted the rich resources Guatemala has in its beautiful hills...

...and saw the beauty this country has to offer.

We were inspired by Guatemalan youth stepping out from the shadow of a civil war in the face of ...

...poverty that still exists and oppression that continues to restrict human rights.

Its people are diverse.

They adapt...

They work hard.

They celebrate.

And they live their lives, just like the rest of us...

...asking only for their human rights...

...in an uphill struggle...

...against a visible and severe wealth disparity...

...disease....

...and overwork...

...but with a vision of hope Guatemala continues on...

...day by day...

...seeking peace, security, and love in a chaotic world...

...and looking toward a better future.

 On to Nicaragua....

The State of the Youth

Walking up the dark 6th street of Guatemala City this past Sunday evening, we came upon a boisterous group of people standing around a large bonfire set up in front of a stage in the middle of the square facing the National Palace. A stage lined with candles, occupied by 5 or 6 people leading songs and chants to the rhythm of a drum line, was located behind the large circle of young people. Surrounding the fire, demonstrators, some of which were on stilts, of all ages, with painted faces, and seemingly modern interpretations of ancient Mayan clothes danced and sang around the burning fire pit. From adolescents to young adults, all were enjoying the brisk night air, the heat of the flames, and the opportunity to set their spirits on fire.

A booming female voice, sang and chanted over large speakers on either side of the stage. She, led by the drum line, came down from the stage and entered the circle around the fire. She was clad with a crown of leaves and a staff covered in vines; she was the leader of this celebration. This was a celebration of the youth; an indigenous celebration modernized as a demonstration for life and peace.

"We are the youth! We are the children of the children of the children of the children of slaves."  

The drums accompanied the chanting crowd as those present lifted their hands together in celebration. 

Photo By: Benjamin Hershey

"We are here to celebrate life! We are here for all the victims of genocide!"

The group denounced the death and violence occurring in Guatemala, calling for peace and for love of life.

"Life is Beautiful! Viva la Vida! [Live the Life] Viva la Vida!... "Live for the dreams, the song, the body, the dance. Feel it deeply in your heart!" 

The young people, the new generation, was embodied in this small celebration under the looming shadow of the National Palace. As rain slowly began to fall on the heads of the demonstrators, they gave thanks to the Earth for the water. They continued dancing in celebration of the gift from their mother the Earth. The demonstration slowly subsided, but the Guatemalan youth had shown that even when the rain falls, they will find a way to celebrate living.

This was the event that began this past week, my first week out of the NAPA-OT Field School. As the week progressed, this spirit-filled night continued to sit in the back of my mind. I began to reflect on the spirit of the youth and the presence of the new generation in Guatemala, to think about all the young lives and young leaders that were lost to the internal conflict.

(Not at La Limonada)

On Tuesday, I had the opportunity to visit La Limonada, an officiated slum in the ravines between Zone 1 and Zone 5 of Guatemala City. This community is famous for its violence, crime, and also its part in the documentary Reparando which you can watch on Netflix. Within this community, we visited a small supplementary school for children during their time outside of normal classes. Here they receive class, a meal, activities, and are also supported by a psychologist. This school has worked with our very own Cincinnati Occupational Therapy Institute (COTI) which provided sensory equipment such as a large platform swing, pillows, and sensory toys. The psychologist had received some training from occupational therapists in how to work with children who may need occupational therapy. She reported that she often uses the equipment with children during her therapy sessions and has used it with some students that she believes specifically need sensory strategies.

However, the most impressive aspect about this small school is clearly the young inspired staff of teachers and psychologist working there. They are all young adults who have decided to spend their time and career working in La Limonada to support the youngest members of the community as they attempt to gain an education. Bear in mind, we brought no cameras, no phones, and as we walked towards this area, a car actually stopped and warned us that we were in a dangerous place. Even Guatemalans have stigmas and fear concerning the community that these young people have chosen to make their responsibility. They are a clear testament to the power and strength of the Guatemalan youth as well as a clear symbol of the new generation emerging in Guatemala, a strong generation that has not had its leaders systematically killed in genocide or civil war. These leaders are beginning to take a stand.

On Wednesday, with a visiting family from the United States, we visited a young man that I had the pleasure of meeting two years ago when I came to Guatemala with Xavier's Occupational Therapy Department. Gerson Cerritos and his family lead a small church called City of Refuge that focuses in community outreach. One of the programs we learned about and were able to serve at was a weekly breakfast for individuals living with addictions. We heard the story of a man who was able to overcome alcoholism with the support of the community he found through the church. Gerson's parents began the church in order to provide, support, food, and in many cases housing to many of the community members. Gerson's family has grown far beyond all his brothers and sisters who continue to have strong involvement in the church to individuals who have no blood relations at all.

Gerson led us to the terrace of his home where we could see a vast overlook of Guatemala City. Here he passionately laid before us the vision and goals of his family for their ministry of solidarity in their community, Linda Vista. 

"You cannot really serve or feel empathy with someone unless you live and walk with them. This is what Jesus did; he felt what [the poor] felt." -Gerson Cerritos

From the summit of Volcano Acatenago

Even as leaders and innovators begin emerging in from the new generation of Guatemalan youth, there is still many obstacles to face for youth of this country. Throughout Guatemala children's homes for both children with and without special needs exist. Due to lack of resources, accessibility, affordability, and quality of healthcare, education, and other obstacles families are forced to give up their children to save their lives. Many Guatemalan children, both in homes and out, deal with violence, fear, and poverty every day. There are still many mountains to climb. However, the youth of Guatemala today show resilience, passion, faith, and determination in the face of oppression, poverty, prejudice, and structural violence, celebrating the hope they see on the horizon.

Complexities of Culture

My Spanish teacher is a bit of an odd guy. Besides being a self proclaimed rebel, rocking the long hair, and wearing at least one large silver or gold ring on each finger, he approaches the world and its diversity with some pretty strong and interesting opinions. He has told me stories of using his status as a basketball player for the Guatemalan army during the war to escape torture. He has recounted telling a variety of very important people to "Come mierda"  because they didn't like his hair and rings or they simply obligated him to do something. He apparently hates being obligated to do things. He has participated in multiple strikes here in Guatemala during his time as both an urban school teacher and a rural school teacher working with indigenous children who only speak the language Kachiquel, he is a "professional singer" (which I often get impromptu samples of during class), and he is a very talented artist. The shear dynamic nature of this guy is overwhelming and makes him a bit of a cultural phenomenon in and of himself.
In my 9 hours a week with this gentleman we dive into conversation of human rights, Guatemalan women, the culture of the United States, the death penalty, education, same-sex marriage, and really anything else we decide we would like to discuss. We sit on the terrace of an Italian restaurant in Guatemala and discuss the depth and breadth of the Guatemalan culture.

During my most recent class, a conversation  with this Guatemalteco about the indigenous culture gave rise to a discussion of cultural conservation and change. Here in Antigua, it is not an uncommon sight to see an indigenous woman, dressed fully in traditional traje, talking on a cell phone, while riding in a tuk tuk, a woman conserving traditions from before the conquistadors while also participating in contemporary society. In one small moment, you see the new and the traditional abruptly coexisting.

We had the opportunity to visit a group of indigenous Kachiquel women in San Antonio Aguas Calientes who demonstrated their indigenous roots by showing us how they traditionally weave, grind coffee with a stone, have elaborate marriage ceremonies (of which I was a part), and cook tortillas over a fire. While there I almost forgot I lived in a world with cell phones and the internet... until one of the women answered her blackberry during their presentation. What a fantastically odd cultural phenomenon, seeing a woman who uses a stone to grind her coffee answer a smart phone that had been tucked away safely in her indigenous güipil. I saw two worlds collide in the hands of someone who speaks a language tracing its origins to before the conquest of the Americas.

It makes me ponder the idea of conserving culture. Can the indigenous culture truly be conserved as if existing in a vacuum far removed from the "developed" contemporary world and its technology and ideals? It is always a bad thing to allow culture to change and be transformed by the times, to not preserve the culture? Could this idea of "culture"..."our culture"..."indigenous culture"..."developed culture" to which we often apply inherent worth, actually separate people sometimes because we want to conserve our separate "cultural identities" so fervently? How do we preserve the wonderful values of some cultures that are countercultural to the majority? How do we comprehend the mixture that comes from the new and old colliding? How do we reconcile a world of many cultures when those same cultures, be it North or Central American or any other, sometimes contribute to human rights violations, misogyny, hunger, greed, and structural violence?

These are the questions my Spanish teacher and I attempted to answer in our 3 hour class this past Thursday. Obviously we haven't solved the worlds' problems yet, but our discussion did seem to boil down to the idea of "dialogue.  We found that it is not that change in culture is always a bad thing; rather change is unjust when it is forced by the hand of another. When respectful dialogue occurs between cultures, those qualities that make a culture rich and beautiful can be preserved, while those qualities that lend towards more negative effects on our world can fall away into history. We realized that we have to approach other cultures... actually we should approach any conversation in general... with intent for dialogue.

As occupational therapists, especially those that cross the larger cultural spectrum, it is important to approach your client with a listening ear, an ear ready to converse and discover the most appropriate goals and methods. It is in dialogue that we uncover the most valuable and effective ways to walk with our clients. We first must be ready to listen and take the time, sometimes the large amount of time, to truly understand our clients. In reality we need to take the time to truly understand our friends, our parents, our teachers, and even our enemies. We can use dialogue to discover a stronger truth and see the humanity in the other rather than separating ourselves into cultures of "us" and "them".
It seems to me, that it is in that dialogue that we break down the complexities and deceptions of our world that allow us to persecute and oppress our fellow human beings. We then can walk with each other toward a simpler, more loving human culture -- a simple human culture expressed through the filters of our diverse experiences, resources, and actions.