December has a lot of celebrations. At the tail of November the western world just finished Thanksgiving day after pardoning the turkey and after the children of the first family of America was cyber bullied making the bully cower then resigned.
After all the stuffing and the trimming people are getting ready for the Christmas season preparing the house, decorating and making a list of whose been naughty and nice for the selections of gifts and the boxing afterwards. I am sure you know why you celebrate … but are you celebrating enough or for the right cause?
Let us not forget too that we just recently celebrated December 1 “World AIDS Day” symbolized by the Red Ribbon and yesterday December 3 “International Day of People with Disability” which has the Man on a Wheelchair symbol. These are just two sectors that are celebrated every year to remind people that there is progress made in the fight against HIV and AIDS and Disability and of course there are challenges that need to be voices out too.
When I started working in the disability sector, HIV campaign was just starting, I was not very familiar with it but it was already introduce to me mainly as a health issue with no relation to my line of work. It was a textbook material that was fascinating for me to read but I was not able to make a link of it to what I was doing until much later.
Over 20 years ago people diagnosed with HIV are dying with AIDS soon after but they are never known, they fade into the sickness like nobody cared. The moment someone is diagnosed with HIV, they become invisible until they fade away and the families are ostracized and driven out of the village literally and figuratively. That was before the discovery of the miracle drugs ARV (antiretroviral) drugs that can extend the life of those infected with HIV, delaying the onset of AIDS giving these people opportunity to live and love, and to advocate for their rights to health and social support and acceptance. They became visible and eventually the stigma that HIV only happens in developing countries was reduced because many realized that it can affect just about anybody. It became visible when people living with HIV started owning their situation and speaking up, louder than ever to help change the perception of the world about the disease and the people affected by it.
As I gained more knowledge in development work and got more involved in different sectors that affects my work, I began to understand the inter-connection of HIV and Disability (with common denomination of poverty). Both works towards prevention, protection and care and both are struggling to educate the population, for acceptance and inclusion.
Now, when diagnosed with HIV one can expect to live longer than what it was 20 years ago if they can get access to medicines all the time. The situation of disability is more or less the same with very little progress reported in developing countries except the numbers are increasing.
At some point in our lives all of us will become disabled, it is part of human condition. It can be temporary or permanent and it can be from many reason including HIV. Globally there are over 15% or 1 billion people with disability and unfortunately 80 percent of the disabled are found in the developing countries. The number of PWD is increasing because of the growing number of people getting old and getting sick of diseases associated with disability – diabetes, stroke, cardiovascular diseases, HIV and mental illness or collectively we call chronic (lifestyle) diseases . Let us not forget the environmental causes of disability – traffic accidents, trauma, natural and man-made disasters such as wars, that adds to the incidence and prevalence of disability world-wide. The challenge of access to basic rights and social protection makes poor communities susceptible to being marginalized therefore experiencing more problems associated with their conditions.
Realizing that these two sectors are linked, I started to take notice of the similarity and the difference in the way they are presented in the real world.
- There are children born with HIV and with the latest medical breakthrough they can delay the onset of AIDS and can grow up and live a normal healthy life provided they access antiretroviral drugs and other medical interventions immediately. While children born with disability have minimal possibility of reversing let alone delay the disability but early detection and intervention can play a big role in his / her development. A child born with disability will experience discrimination, stigma, stereotyping, bullying when s/he is growing up and may end up sad and recluse if the community does not change their perception about people with disability.
- Like HIV / AIDS there are other types of disability that are hidden. Example one cannot know a person with hearing impairment by just looking, it is the same as for someone with virus in his blood.
- Cultural practices that can perpetuate the spread of HIV are still done and the number of those affected are hard to count because many of them to do not seek medical attention until it’s too late. While disability are not culturally bound, there’s no practice or ritual or beliefs that can make someone disabled, it can be structural or chemical in nature, and more evidence are now pointing to environmental causes.
- Young people succumb to peer pressure in engaging in promiscuous sexual practices and in some countries does not believe in the use of protection resulting to a time when the age affected are getting younger and younger and these people didn’t care of the consequences. The values of having a real relationship are lost to some young people that they ignore what companionship can be when they are growing up. For young people with disability, many are longing to have a lasting relationship that can provide them happiness and sense of belonging and purpose but are struggling because of the many discriminating and misinformed social norms that we have in our community.
- Everybody gets old period! At one point you will have difficulty moving and some will need assistance of cane or wheelchairs. For PLHIV eventually the body will succumb to the disease and AIDS will take over, rendering one disabled to function without help and support. There are people with disabilities that doesn’t get old, they die very young in spite of intervention, while in low income countries, some people with disabilities die because there’s no intervention provided to extend their lives and enjoy good life compared to the middle and higher income countries.
- Stigma and discrimination are big problem of both PWD and PLHIV experience because there are still many ignorant people in the world.
- There is also great risk for people with disability to be exposed to HIV through misinformation, sexual violence and the lack of access to health care and services. While PLHIV may develop impairment as the disease progress.
- Funding for research in HIV/AIDS are numerous compared to Disability. The advances in prevention, intervention and care are more apparent in the global report of decrease incidence and prevalence of infection. Eventually a cure will be found and HIV/AIDS will be stored as part of the medical history. But I have yet to see the same interest in disability prevention, intervention and care without resorting to abortion when babies are found to be gene defective or to euthanasia when its too much to bear for both the patient and the family.
Having known the similarities, differences and challenges of these two sectors, I’ve made a choice that I will continue to extend whatever help and support I can be it service or by simply talking about the issue, getting involve and reading more about the subject. That is why I decided I would remember them always, so I marked December 1 and December 3 as two important dates to remember before the start of the Christmas rush. It gives a different meaning to celebration.
Remember every little things we do for others when put together can be big things for those that receive them.
I suggest you do the same next year when you start organizing your calendar, to mark dates that you think should be included in the Days of Celebration and get involve. The more people care the more our world will be “one happy place to live in for all” and everyday will be like Thanksgiving Day!