IMAGINE if you can, someone walking to a store on a very normal day.
Upon arrival there, they perceive two people arguing, and a fight erupts. This individual intervenes to stop the fight, but one of the pugilists rushes over to a bag, pulls out a machete (cutlass) and whilst wielding it in anger, the blade makes contact with the concerned civilian’s knee, shattering ligament and bone.
In an instant, the innocent individual has lost the ability to use a limb. Think of the many daily activities that such a person could no longer do.
Sadly, this scenario is all too real for many. A young cousin of mine became a victim this month. Somewhere in the Northwest District, this aspiring young man took his life’s savings, bought a dredge and put together a workforce to find gold, only to have his dreams shattered by a machete.
This past month, after I heard this story, I thought that sharing this would be a good way to jolt readers into thinking about disability as I started writing this column.
It’s a subject, I am sure we all agree, that needs some active attention in Guyana.
Perhaps you are like my cousin — young, active, carefree and secure in your life. Perhaps you are a family member or friend of someone who has a disability, or yet still, you may yourself be suffering from being disabled, whether from birth or acquired later on in life.
Whatever your activity or awareness level on this issue, we can put our thoughts
together and arrive at a complete picture on the state of affairs when it comes to
disability in Guyana.
Once we have identified the problems and needs of people with a disability, only then can comprehensive policies be drafted that will adequately address the issue affecting the lives of so many people on a daily basis.
So, let’s talk about disability.
A disability can present itself in many forms as we have discussed previously. It can happen to anyone. Some are born with it, some acquire it through some degenerative disease, while others are disabled through accidents, industrial, traffic, domestic and other avenues.
There are many ways people become disabled, and anyone can become disabled at any time. We can address in detail the various types of disability in a later article.
There are even some unknown causes, and some disabilities are preventable. Whatever the cause, a disability is anything that causes impairment in physical functioning. A person’s activities become limited, and they could become dependent on others for assistance with daily functions, such as eating, hygiene and budgeting. The disability may also prevent the person from finding love and work.
I can say with confidence that only a person with such a problem can fully
understand the impact it has had on their life. The caregiver or parent of a disabled person also bears much responsibility, and is usually the key to the individual’s wellbeing. In other words, for many disabled people, the quality of life they enjoy depends on the graciousness of their provider.
This could be a wretched existence. I know there are many kind parents, friends and family members, but without support and guidance from trained personnel, a disabled human being could be deemed burdensome and stressful on even the most well-intentioned caregiver.
Someone recently told me of a teacher who has a child who is hearing impaired. He wets his bed, seems “dumb and stupid,” and lacks focus. He is never taken out of the house, and remains hidden and abused by his family. This, sadly, seems to be the reality to many in Guyana, and is a matter not discussed openly.
This is disturbing, as this particular mother is a teacher; a professional; someone we hold in high regard; the kind of person who can research and ask questions, solve problems.
It only underscores the level of frustration experienced by the caregiver, without guidance and support from the community, while the disabled bears the brunt of this stressful situation.
While my intention was not to address specific disabilities in this introductory
article, I am moved to address all those who care for hearing impaired children and adults. The deaf are not disabled; they only lack the ability to hear. “A deaf person can do anything a hearing person can do except hear.” (Irving King–Jordan, first deaf president of Gallaudet University).
Without that hearing, they need to be given the ability to use sign language using their hands. I would suggest immediately that any parent, friend, family member, pastor, community leader of a deaf person, seek out other parents with deaf children and make it a date to meet up somewhere. It could be in the Botanic Gardens or the National Park, at church or anywhere that is safe.
Start talking about giving the deaf the power to interact with each other and to
communicate through sign language.
I have set up a website www.disabilityinguyana.site40.net through which readers can contact me. Let me know when you have formed these groups, and I will be happy to send the resources you will need to help teach and learn sign language.
As long as your children get together and interact with each other, they will start communicating, and they will need to be guided to do it properly. Deaf children are moved to use their hands instinctively, just as hearing children are moved to speak; but the deaf cannot develop speech because they can’t hear sounds. Give them the power to sign and stay connected to each other in a community of support for the deaf.
Habilitation vs Rehabilitation
The road to prevention and recovery for a person with a disability lies in providing them with the necessary health related service that will cause the disappearance of the disability or improvement in their physical functions. How this will be provided is a matter for individuals and the society in which they dwell.
At the level of this column, my only intention is to start a discussion on the topic, provide helpful links to resources when I can, and be available through the website to answer questions as best as I could if you have them.
In continuing the discussion, it is necessary that we have a clear understanding of terms used in remediating
a disability. Some people will need to be ‘habilitated’, and this means they were already born with a disability. We habilitate a child with cleft palate by surgery, thereby giving them the ability to speak before they go to school for example.
We can ‘rehabilitate’ a person. This means they acquired the disability after birth and require care to recover the functions they were born with. An understanding of these terms sets apart those born with a disability and those (many of us) who at any moment can succumb to a limitation in our functions because of some tragic circumstance. We need to bear this is mind as we go along with the belief that a disabled person is not like us.
On April 29, 2010, I was happy to read in the Stabroek News about the launching of the National Disabled Persons Network. Groups like these will form the nucleus for disabled persons in advancing a better quality of life for its members.
A key element in changing society to accommodate its disabled citizens is to include the input of the disabled themselves. It doesn’t matter how good the intention is to help. It will only be successful if we have the respect and approval of the persons who themselves are affected by the problem. That the disabled have a voice is key to the success of a comprehensive programme on disability at whatever level this is
accomplished.
I look forward to talking to these groups in the future. Every human being deserves the opportunity to enjoy life to its fullest. As a society, we owe it to the most vulnerable citizens to provide them with the means to enjoy the best life they can have. Healthier citizens in turn will create a healthier society.
We can make the change and the power to make this change lies in creating
knowledgeable citizens. With the advent of the Internet, information and links to
resources are at everyone’s fingertip for almost everything. This makes it easier to share and exchange ideas from an informative level. Take the time to type in the
word “disability” in Google and see what pops up.
It is true that the most meaningful resources available on the topic may now be covered by copyright and special permissions may be required to read academic journal articles. There should still be enough allowed to provide a sound understanding of the problem in general.
Don’t be afraid to search and read. Become compassionate and concerned for a disabled person — most of all, become knowledgeable.
(Lauren Stoll, Post Baccalaureate Speech and Language Disorders)