Childhood spent in clinics hallways
Imagine being a happy child; your hands are messing with everything you get them on while attempting to discover the world around you. your legs are wobbly carrying your curious hyperactive body, just like any other child in your age indulging in your first adventure with your surroundings. Only to discover, few months before your first day at school that you have “Muscular dystrophy”; a muscle condition that will not be cured.
This is the story of Adam, born in 1996. He woke up one day in his sixth year, fell off the bed while trying to stand and broke his leg. Diagnostics revealed that the fall was not a minor accident, but rather the beginning of a long journey of challenges and successes, to be told in this story.
The weight of the news on the family with average income was rather heavy. Composed of five members and living month to month; the family had a limited list of options to choose of:
Neglect
Costly medications
Holistic treatment
Usually is the first option a person with disability faces, but in Adam’s case it meant an early death
which will not treat but rather slow down the aggressive progression of the disease
Physical treatments to reduce deformations accompanying the disease, chemical and psychological therapy to help Adam adapt and accept the consequences of the condition
More
The cure that does not exist
“Holistic treatment” maybe the first option to go with if you were one of Adam’s parents, but the family that lived in rural Damascus in the year 2002 was unable to find experienced physiotherapists in that location, nor were there affordable physiotherapy sessions in the capital either.
“A holistic treatment is only available abroad”, the family doctor informed Adam’s parents, after proposing an NGO that provided some help to people with similar conditions; so the family was forced to go with only the medications option.
The crutch that became a sword
Adam began his second year at school with the aid of two crutches, he leaned on them to help him move around. He got used to them so much that he made them into two friends that walk him one step at a time to school and back. He felt safe around them, despite some bullies at school who mocked his walk and called him names while making a set of dual swords out of his crutches.
Children at school did not accept Adam’s differences, teased him and refused to play with him. The distance between them and Adam grew larger with time and the crutches that were once a source of safety, became obstacles against his participation into his surrounding, until a moment of time came and he started asking his mother: “When will I heal enough to play with my friends?”
Adam’s mother, mobilized by his isolation, took him to a recreational activity organized by one of the NGOs concerned with various disabilities, such as autism, intellectual disability, people with down’s syndrome, audio/visual impaired and people with mobile disabilities, in an attempt to introduce him to people with similar experiences, which would make it easier for him make new friends.
Adam has his first friend
During one of the NGO’s activities, ‘Alaa’ approached Adam, who did not give him enough attention at the beginning. However, given the warm nature of Alaa’s heart and his rejection of injustice, the boy with Down’s syndrome raced to help Adam when he fell down due to an intentional push from a bully, that is when Adam and Alaa became good friends, spending time together and participating in the activities of the NGO.
If you were a manager of an NGO in a rural area, what kind of appropriate activities would you deem fit for the participation of Adam and his friends with disabilities? Dance & Sing
Card Games
Ball Games
Chess
Puzzle
Wrong choice, it is very difficult to design an inclusive activity to all children with various disabilities, due to the differences in capacities of participants.
Discrimination is not always apparent
Adam continued attending classes at the local public school, despite the increased effort he had to expend to climb up and down its many stairs.
In his fourth grade, Adam got to know “he who does not know how to read his name” – ‘Mustafa’, a boy larger and older than the rest of the children at school. Even though he does not have any apparent disability, Mustafa is stigmatized by being slow and lazy due to his dyslexia, which made him subject to bullying and years behind his colleagues in education.
The teacher spent a lot of effort to help Mustafa in class, but eventually gave up and neglected him when she failed to witness progress, doing so without understanding his condition. Adam realized from the first moment that the mockery Mustafa is enduring is very similar to his, so he offered him help by dividing the words when reading, and since then they became good friends, helping one another inside and outside of school.
From crutches to wheelchair
As Adam’s condition progressed, and the atrophy in his muscle worsened to an extent of not being able to carry his body, he replaced his crutches with a wheelchair. This itself was not the most challenging change that the 13 years old boy endured, but rather access to higher stories, where his colleagues in elementary education were attending classes, became very difficult in a school where no ramps or facilities to children with wheelchairs were provided. This became increasingly the biggest burden on Adam’s educational future.
The headmaster refused to transfer the seventh-grade classroom to a lower story, forcing his father to carry him up the stairs every day. Adam did not experience the luxury of recess in the outdoors with his classmates, but rather had to stay in classroom, sometimes with his mother visiting, to feed him and help him use the ill-equipped lavatories, until the bell rang at the end each day at school. Adam’s future is at stake
Adam’s family were persistent, and so was he, to continue his education, attempting to achieve a better life. However, thirty-seven days of carrying Adam up and down the stairs caused Adam’s father a spinal stenosis, which made it very difficult to continue doing the same thing.
What do you think Adam’s options were? Not go to school
Sign in a private school
Convince the headmaster
This option will lay an early end of any future ahead of Adam
With unaffordable fees, Adam’s parent will fail to meet these additional costs
Despite being the logical thing to do, the headmaster has an endless supply of counter-arguments to reject this request of move the classroom, alternatively, he managed to convince the family with a different option ...
Journey of a silent friendship
To allow him continue his education, Adam’s family chose sacrifice! Adam had to wake up before all of his colleagues in his local school to make it to the bus which will take him to the “Amal institute for children with disabilities of mobility”, located in Damascus Center near Bab Mosalla. Adam took the long way to his new school daily with closed eyes and a heavy heart, with nothing to ease up this journey in the first few trips.
Then came along the sweet silence of Shayma’a, the deaf girl who communicated with him in sign language and sat next to him on the bus that took children with auditory disabilities to the neighboring institute.
Adam did not know anything in sign language, and written communication was not an easy for her since she was just beginning to learn how to read due to the lack of a proper curriculum. The two created a style of communication which made their daily journey to school less troublesome and more fun.
Lebanon, shortest way to survive
In 2011, the unrest in Syria began, causing repeated breakdowns to the bus which transported the children, while workers at the institution faced increasing challenges to reach it. However, Adam’s hope to continue learning and make it to elementary examinations and continue to meet Shayma’a did not fade till the year 2013; when he realized he will never meet her again, as the deaf school was shut down and converted into an emergency shelter for displaced people.
Adam had his share of displacement as well, when his neighborhood was severely shelled in 2015, he was forced to escape to Damascus with the rest of his family carrying nothing but their clothing they had on them, to where a family relative received them in his house. Soon, the little house became too small to host both families, forcing Adam’s parents to consider safer options, bearing Adam’s inability to run or hide in mind, so they ended up moving to neighboring Lebanon.
The deaf does not hear the noise of death
Adam sat on his no-longer mobile wheelchair, on the rough muddy ground of the refugee camp in Bekaa, Lebanon. This transition rendered him unable to move, more isolated, a prisoner of his tent and often silent, except for his conversations with ‘Labeeb’, the deaf young man who became a partner-in-loneliness after being separated from his uncles and cousins, who used to communicate with him in sign language, and they all had inherited this disability from a long family tradition of endogamous marriages.
Adam was reminded of Shayma’a by Labeeb, they became quickly good friends, where Labeeb explained his suffering before coming to Lebanon due to his disability; as he and his relatives were isolated from what was going on due to their condition, they were only able to receive updates from “Aljazeera” news channel which was the only means of receiving news in sign language.
The family did not have access to proper care or attention to their safety during the war, until one day Labeeb found himself in the middle of the street, people running scared around him and no one was able to comprehend the situation until smoke became visibly rising from the opposite building, indicating a landing shell that damaged the building, hat was the moment when the decision to leave the country was taken by the family. Disability is not only a health condition
Adam was unable to continue his education in Lebanon due to losing all legal documents and identifications when the family ran away from their home, the pressure increased as a result of losing the ability to move around in the camp, as well as the stress from feeling isolated, until one of the autumn nights of 2018, when he witnessed an event that changed the course of his life.
A group of young men attacked a teenager who was desperately trying to defend himself. As they became more and more violent, Adam screamed at them to stop, but they did not care for his calls. He pulled his wheels to move towards them but the wet mud prevented his movement, so he looked around him seeking help in despair, he was sad to see his attempts to help the autistic boy failing in vain.
A book club to break the loneliness
That event had a large impact on Adam, he felt completely useless and started perceiving himself as a burden that his parents had to endure, having to skip dinner over his costly medications sometimes, and allocating big parts of the already-little refugee assistance to cover his treatment. Adam began to ponder frequently about ending his life, to relieve his family and spare the little income from the heavy costs of his needs of treatment.
Adam met ‘Sawsan’, a manager of a local NGO concerned with people with disabilities, visually-impaired herself, she had been through a lot of struggles in her life. The two got to know each other during one of the field visits of the NGO to the camp in 2019, and Sawsan was able to see the helpless look on life that Adam had in his heart, and thus invited him to the book club with people with similar stories like Adam’s.
The group would meet up and enjoy spending time exchanging experiences and learning together. This was of great help to Adam, who began to navigate a new world where his differences are accepted and his suffering is mutually shared. That is where he met Carol, a young Lebanese volunteer at the NGO, who created in his heart a fuzzy feeling, perhaps love.
COVID-19 and the double–layered discrimination
In March of 2020, Lebanon was plunged into the COVID-19 pandemic much like the rest of the world, shutting down in attempt to corner the virus, armed with very little knowledge of the nature of the illness and protective measures. The mainstream and social media mobilized towards spreading information about the pandemic, this effort largely marginalized people with disabilities, with absence of targeted awareness campaigns to address their needs for information, let alone the numerous rumors and misinformation about the virus that claimed that disability could be a side effect of the vaccine or recovering from the virus.
Adam endured painful symptoms, and he was unsure of being infected, but those rumors caused a psychological pain that compares, if not exceeds, the physical pain which he got over.
Visual impairments
Auditory impairments
Mobility impairments
Mental disabilities
To avoid infection with the virus, you will give up your sense of touch, which is your most accessible way to perceive the world around you
Faces wearing masks surround you, so that you are unable to read lips, and your misunderstanding of people around you increase
The total lockdowns paralyzes your movement, and there is nowhere to go, even though leaving the house is your only outlet
People fear you more after rumors spread that catching the virus or getting the vaccine will infect them with down's syndrome
Adam today and tomorrow…
What does the year 2022 have in pocket for Adam, in your opinion?
He became an activist
He became a maintenance expert
He became lonelier and depressed
Adam now is experiencing those three options; he was unable to continue his formal education but his knowledge has increased greatly after getting in touch with the world of books. His secret dream to be with Carol is still alive. He was able to get an advanced training in one of the NGOs on how to perform mobile maintenance where he became an expert in his new profession.
