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Reinventing the language

Tuesday, 16 December 2014 Written by // Guest Authors - Revolving Door Categories // Activism, Living with HIV, Opinion Pieces, Revolving Door, Guest Authors

To combat fear and stigma, guest Tom Johnston from New Brunswick says “the terms “AIDS”, and “HIV” need to be eradicated from every area of communication and replaced with something more representative of what this virus actually is.”

Reinventing the language

ACQUIRE  (Merriam Webster Dictionary)

transitive verb

1:  to get as one's own:

a :  to come into possession or control of often by unspecified means

b :  to come to have as a new or added characteristic, trait, or ability (as by sustained effort or natural selection) <acquire fluency in French> <bacteria that acquire tolerance to antibiotics>

2:  to locate and hold (a desired object) in a detector <acquire a target by radar> 

AIDS/HIV: Every time I say the words, especially when disclosing and even as a long-term survivor, it is like spitting up phlegm. My self-confidence diminishes, my defenses come to the forefront and I prepare for rejection. I feel damaged beyond repair and a pariah within society. 

I am my own worst critic, and yet ironically, my biggest supporter. I have blessings in my life and joy in the world I have created for myself. I don’t look for love, or even respect, from anyone but myself. I have become a very deep person so maybe age does bring wisdom. I am the captain of my own ship and very pleased with my journey thus far. I revile not the illness itself, but the way it has been portrayed, ignored, and even criminalized. I react negatively to being asked, “how did you get it?”, as if the method of transmission would lessen the seriousness. 

I was forty years old when I was diagnosed. Being young, healthy and negative is a memory fading into distant recollections, short 8mm videos of times long gone. I question my own perceptions of these memories, yet hang on to them in desperation and fear of losing that feeling of blessed ignorance.

I had about half a lifetime, and for that I am grateful. 

It breaks my heart to see children and young people still being infected, and battle-worn veterans making themselves ill from the decades of fighting not just the illness, but also government bureaucracy, big-pharma, discrimination and stigma.    

After more than 18 years of being positive, I still see the reaction of those I disclose to. There is the look of shock in their eyes, and the inevitable “you have AIDS?” Despite the effort to educate on the difference between HIV and AIDS, they invariably relate the two as one.

How can we hope to alleviate stigma for a virus whose very name promotes it. 

For 32+ years the terms HIV and AIDS have been used interchangeably, which has caused the world to look at them as equal and the same. AIDS is a term that, from the beginning, has been perceived as one of the most feared illnesses that was/is spread by the outcasts of society through addictions, sex (gay) or other unhealthy behaviors: thus self-inflicted wounds. 

In history, illnesses, such as leprosy, ebola and such have been looked at with some apathy. These are openly discussed in the education system as well as among peers for understanding and prevention. HIV/AIDS stands on its own and walls of protection are erected to silence education and prevention because of old bigotries, and beliefs that are multi-generational.

This is not to say things haven’t improved, because they have in the younger groups who have stepped forward to debunk many of the things that their parents, friends or religions have misinformed them of. Many of these young people try to make a difference, either through volunteering in organizations, many times as board members, or by talking to their friends and peers. Still, after more than 32 years, the barriers remain. 

In my opinion, the terms “AIDS”, and “HIV” need to be eradicated from every area of communication and replaced with something more representative of what this virus actually is. 

The acronym "AIDS" was suggested at a meeting in Washington, D.C., in July 1982. Doctors thought "AIDS" was an appropriate name because people acquired the condition rather than inherited it; because it resulted in a deficiency within the immune system; and because it was a syndrome, with a number of manifestations, rather than a single disease. 

But “acquired" implies a successful effort to obtain, which diminishes the reputation of an infected person and severely impacts the perception of the seriousness of the illness.

Why do we even have to differentiate between hereditary and non-hereditary? We must re-invent ourselves and eliminate the negatives associated with this virus. The road we are currently travelling will not lead to the elimination of infections, as common sense says people are going to continue to have sex, safe or unsafe. Emotion will outweigh intellect. Knowing better does not always translate into good decisions. 

How about, as an alternative, “IDS” or “IS”(immunodeficiency syndrome) to encompass both?

I am not just throwing this out as a random means of expressing how I feel. I would like to get feedback, either in agreement or opposition. Let’s have this discussion and see where it leads. 

I realize how monumental a task this change would be, but I can envision how such revitalization could bring about some huge changes for the better. I can see people being more open to testing, more communication, easier and more positive education and prevention, less negativity, discrimination and stigma and an increase in acceptance among the general population. 

What do you think?  

About the author: "Diagnosed in 1996, I have been involved in a number of organizations. Currently, I am an at-large board member with GNP+NA, a board member with AIDS New Brunswick and a working member with the Health and Wellness Initiative in New Brunswick. I live in rural N.B. and enjoy my time landscaping, home projects, boating and golfing."