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A friend came to me one time and asked: “Why do you expose children with disabilities in public during parades and other activities? Are you just not inviting criticisms and worse, discrimination, when you do that?”
When I heard this, I was reminded of my niece, Jane, who does not have arms. Right after she was born, her mother, my cousin, slowly felt the fear rising when she saw this tiny human bundle that only had shoulders. She did not see the tiny pink fingers that mothers always count to make sure that the baby was “complete”. There weren’t even stumps; there were only two collar bones that ended abruptly into nothingness. There was nothing below the shoulders. She almost went mad.
When Jane was 3 months old, her mother got tired of covering up her baby daughter whenever she took her out to the barangay health center for her immunization shots. Fed up with feeling anxious about how other people would react when they saw the baby, she decided to expose her for the entire world to see. She made her wear sleeveless dresses; when Jane first learned how to walk, she fitted her with a bicycle helmet which later evolved into a cushioned headband, to protect Jane’s head in case she would trip while walking.
“Nadawat na man nako akong anak. Naa ra nas mga tawo kung ila siyang dawaton pod. Kung dili na nila mahimo, wala na koy mahimo,” the mother would tell me. [I have accepted my child. It is thus up to other people to accept her. If they can’t, I cannot do anything.]
I have accepted my child. It is thus up to other people to accept her. If they can’t, I cannot do anything.
Now, Jane is a healthy 13-year-old who plays soccer, joins Math competitions and does everything that other 13-year-olds do. Except for one thing. She uses her feet for everything: walking running, writing, eating.
Accept them. It is so easy to say this whenever people are asked about how children with disabilities should be treated. In a lot of our awareness activities, we often hear this word: acceptance. “We should love them,” says one. “Welcome them into society,” says another.
Then it becomes cliché.
For how does one measure acceptance? Does acceptance mean overlooking the disability and pretending that the child is “normal”? Does it mean accepting the child’s “abnormality” and stoically bearing it because it is God’s will? Does it take on the form of keeping the child away from prying and discriminating eyes, not exactly hiding him out of shame but rather minimizing the child’s out-of-the-house activities, in order to soften the impact of his disability? Or maybe it means accepting the disability but using every available means to improve the child like paying for expensive services, operations, devices, in order to make him like other children?
There are two major ways by which disability is perceived. One, the Medical Model, looks at disability as a deficiency, an abnormality. It is the child that is defective… abnormal. The remedy therefore is to cure the child; normalize him. The agent of remedy, in this case, is the professional: the doctor, the physical and occupational therapists, the speech therapist. The burden lies on the parents to make the child fit into society’s idea of normalcy. Woe to them who have no access to professional services either because they do not have the financial resources to do so or because these services are simply non-existent. The child has to stay just as he is: disabled.
The Medical Model looks at disability as a deficiency, an abnormality. The burden lies on the parents to make the child fit into society’s idea of normalcy.
The Social Model, on the other hand, defines disability as a difference, a uniqueness, part of the diverse characteristics of humanity. The disability is not, in itself, disabling or a problem. It becomes limiting only when the environment in which the child with a disability finds himself in becomes the barrier which prevents him from functioning as fully as he can; when the interaction between this person and the society of which he is a member becomes limited, either because his movement and his speech is limited or because society itself, with its negative attitudes, does not allow him to fully participate. The remedy for disability-related problems then is a change in the interaction between the individual and society. In this case, the professionals may still come in to work at the level of the child — improve his capacity so that he can reach out to other members of his community. For instance, physical therapy enables him to move, to walk so that he can join people in the streets while occupational therapy, in the case of the child with autism, teaches him how to behave and communicate so others can understand him. But unlike the Medical Model, the Social Model does not stop there. The agent of remedy is the individual himself, an advocate or any one who works to affect the relationship between the child with a disability and society. Advocacy work is therefore of great importance.
The Social Model defines disability as a difference, a uniqueness, part of the diverse characteristics of humanity. The disability is not, in itself, disabling or a problem.
We all know that inclusion does not come automatically, unfortunately, even after the child has made some leaping progress in his abilities. The best way to let the child put to use all of the skills that he has learned is to educate the community so that they will give him the respect and the trust that he needs. There should be awareness of the existence of the child, his rights as well as his potentialities. If the struggle for social acceptance is not carried all the way to this level, then children with disabilities will continue to remain segregated and discriminated. The gains that will be made will just be scraps – little concessions that society gives in order to give the semblance of acceptance. Thus, children with disabilities who have spent many years going to Special Education classes, when they grow up to become disabled adults, still cannot find a way by which to put into practice all the things that they have learned in SPED. They remain unproductive individuals whose future their parents continue to worry about, despite being “educated”. Deaf people who have graduated from college still remain unemployed because who wants to hire the deaf anyway?
This is the reason why the mothers, children with disabilities and the staff of GPRehab* parade on the streets every chance they have. They are there because they want to raise awareness about the rights of children with disabilities. They are there because they want society to know that the existence of these children cannot be ignored anymore. More importantly, they want society to understand that, although the national government itself has already, supposedly, undertaken legislative measures to ensure the inclusion of disabled children in society, there has to be moves to facilitate local implementation of these laws, with the local government and its concerned agencies working together with parents and families with mutual respect, to create an environment that will nurture the children and promote their development.
The mothers and children whom you see in the streets come from families who only have enough, some even barely enough. Yet they are advocating for the rights of all children with disabilities and their families, even for the highly privileged among us: the right to be recognized, the right to education, the right to play, the right to live a life free from ridicule and discrimination. Their presence has definitely made an impact in the community, that’s for sure. Because of their courage, people are more aware now about disability in children, as a result of which these children, even those from the middle and upper classes, can now walk in the Mall without eliciting stares from the people around.
It should be remembered that the Civil Rights Movement gained momentum in the 1960s because thousands of blacks fearlessly marched on the streets to demand for equal treatment. The Gay Rights Movement is where it is now because the gay community has opted to come out, transcending their fears of ridicule and discrimination. The right of the women to vote was given because the women came out and demanded for it.
Acceptance does not only mean loving the child with a disability. It means recognizing his rights and believing fully in his ability to make changes in his own life, whether with a greater or lesser degree of support. It means showing willingness to go the extra mile so that the very social structures that have presented obstacles to his participation in society can be eliminated. It means recognizing the fear of ridicule and discrimination, not as deterrents but rather as the driving force behind the desire for change. For to do so otherwise would only mean subjecting our children to these very same negative forces that we are so fearful of even until such time that we will not be there to protect them.
As the mothers of the children continue with their struggles, I am reminded of Margaret Mead, a great anthropologist, who said “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever does.”
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever does. – Margaret Mead
*Note: GPRehab or The Great Physician Rehabilitation Foundation is an NGO that works with and for children with disabilities in Negros Oriental, a province in Central Philippines. After 9 years of implementing a children’s rehabilitation project with support from the Norwegian Agency for Development Cooperation (Norad) and the Norwegian Disabled Care Foundation, a Norwegian NGO, it is now focusing on mainstreaming early identification and intervention of disabilities in children in the early childhood care and development system, still in the same area. This article came out in a local paper in March 2010. The issue being espoused is still relevant today.
Analou is a physical therapist by profession. She is the founder and executive director of the Great Physician Rehabilitation Foundation, Inc. (GPRehab), a non-government organization working with and for children and young people with disabilities in Negros Oriental, Philippines through habilitation/rehabilitation services, advocacy, inclusive education, and community-based rehabilitation.