I was pleasantly surprised and heartbroken at the same time.. Let me explain..
I'm not sure how many beds they had but I estimate it was probably around 300 with residents of all ages. Ilse explained that many of the residents were not orphans. Their families could not provide them with the skilled nursing care or support they needed so the orphanage was their only option. Ilse lives in Antigua and goes to Hermano Pedro often. She knew several of the residents and staff. You could tell they really loved her visits.
One room appeared to be a room for medically fragile infants; another large room was for adult males; one for adult females of all ages. I could go on and on.. I passed a therapy room where a couple of residents were receiving physical therapy. I think we arrived in one room as the residents were getting their briefs changed. Each resident sat in their wheelchairs at the foot of their beds waiting. In the ladies' room the beds were covered in brightly covered bedding. Each room was very clean and staffed with multiple nursing assistants.
We dropped our boxes of supplies and got to work on repairing some of the resident's wheelchairs. Most of the chairs required new belts and harnesses. Breaks were tightened and other adjustments were made as needed.
Bruce entertained residents with his singing and Ilse chatted with some of the residents while working on the chairs. One young woman shared that she was going on vacation. We were made adjustments to a temporary wheelchair that would be easier for her family to transport.
I thought about the medical care, education and support these young women would receive if they lived in the U.S. They would have gone to school with their peers; some may have gone on to college, and several would have jobs, gotten married, and a few would have children of their own. It will take decades of social reform before Guatemalans with disabilities are able to experience the rights and freedoms promised by the United Nations Convention on the Rights of Persons with Disabilities (CRPD). However, I see a glimmer of hope through the images I see on Facebook of some of the workers at the Hope Haven participating in wheelchair sporting events. I wish I had more time to spend with them. I would love to hear about advocacy and systems change in Guatemala.
What disturbed me the most that day was the manner in which a young woman was restrained in her wheelchair. Her arms and hands were covered by a denim contraption that I was told was protecting her from biting herself. I long piece of fabric came under her breasts and was tied tightly in the back of the wheelchair. Another piece of fabric was lodged tightly between her legs and was supposed to keep her from slipping down in her wheelchair . She was crying and shaking. It wasn't clear whether she could walk or not, however, she was able to pull her legs up and sit cross-legged. We added seatbelts and a chest harness to make sitting in the chair a lot more comfortable for her.
I wanted to cry. I thought of my own son and what his life would be like as a young man with autism living in Hermano Pedro. He was self-injurious when he was younger. He would hit himself, bite at his hands when he got frustrated, and pinch other students. Would he be strapped into a wheelchair? Would he wearing diapers into adulthood sitting in his own urine until someone noticed or until diaper change time happened? Would he have even survived into adulthood in Guatemala? Those were the thoughts that occupied my mind that morning. I wanted to leave..
It's difficult to write about Hermano Pedro. I've written so often in this blog that I either didn't know what to expect or it was better not to have expectations. In this case, I knew I had to prepare myself mentally for the worst.
Images of children with disabilities warehoused in bare cribs with blank stares, sunken eyes and dressed filthy torn clothes with dirty diapers came to mind. I had seen videos of orphaned children with disabilities in Europe and I cried afterwards. What might an orphanage be like in such a poor country? What kind of work would we be doing? Could I handle what I was about to see, smell, or hear?
I was pleasantly surprised and heartbroken at the same time.. Let me explain..
We were a small group-- me, Ilse, Brad, Bruce, and Greg Skolaski. The best way to describe Greg is that he's a retired American Occupational Therapists who travels around the world doing voluntary OT work wherever he's needed. It was a joy spending the day with him.
Greg, Bruce and Brad |
The front of the building is a typical medical clinic. There were lots of local people waiting to be seen. The hallways were decorated with Franciscan artwork and each section had several small courtyards. Some of the courtyards were garden, others were play areas for children, and another was converted into a small swimming pool for the residents. I'm not sure how many beds they had but I estimate it was probably around 300 with residents of all ages. Ilse explained that many of the residents were not orphans. Their families could not provide them with the skilled nursing care or support they needed so the orphanage was their only option. Ilse lives in Antigua and goes to Hermano Pedro often. She knew several of the residents and staff. You could tell they really loved her visits.
One room appeared to be a room for medically fragile infants; another large room was for adult males; one for adult females of all ages. I could go on and on.. I passed a therapy room where a couple of residents were receiving physical therapy. I think we arrived in one room as the residents were getting their briefs changed. Each resident sat in their wheelchairs at the foot of their beds waiting. In the ladies' room the beds were covered in brightly covered bedding. Each room was very clean and staffed with multiple nursing assistants.
Ilse, Brad and Bruce working on a resident's wheelchair |
We dropped our boxes of supplies and got to work on repairing some of the resident's wheelchairs. Most of the chairs required new belts and harnesses. Breaks were tightened and other adjustments were made as needed.
Bruce entertained residents with his singing and Ilse chatted with some of the residents while working on the chairs. One young woman shared that she was going on vacation. We were made adjustments to a temporary wheelchair that would be easier for her family to transport.
This young woman loved spending time with us! |
I thought about the medical care, education and support these young women would receive if they lived in the U.S. They would have gone to school with their peers; some may have gone on to college, and several would have jobs, gotten married, and a few would have children of their own. It will take decades of social reform before Guatemalans with disabilities are able to experience the rights and freedoms promised by the United Nations Convention on the Rights of Persons with Disabilities (CRPD). However, I see a glimmer of hope through the images I see on Facebook of some of the workers at the Hope Haven participating in wheelchair sporting events. I wish I had more time to spend with them. I would love to hear about advocacy and systems change in Guatemala.
What disturbed me the most that day was the manner in which a young woman was restrained in her wheelchair. Her arms and hands were covered by a denim contraption that I was told was protecting her from biting herself. I long piece of fabric came under her breasts and was tied tightly in the back of the wheelchair. Another piece of fabric was lodged tightly between her legs and was supposed to keep her from slipping down in her wheelchair . She was crying and shaking. It wasn't clear whether she could walk or not, however, she was able to pull her legs up and sit cross-legged. We added seatbelts and a chest harness to make sitting in the chair a lot more comfortable for her.
I wanted to cry. I thought of my own son and what his life would be like as a young man with autism living in Hermano Pedro. He was self-injurious when he was younger. He would hit himself, bite at his hands when he got frustrated, and pinch other students. Would he be strapped into a wheelchair? Would he wearing diapers into adulthood sitting in his own urine until someone noticed or until diaper change time happened? Would he have even survived into adulthood in Guatemala? Those were the thoughts that occupied my mind that morning. I wanted to leave..
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