PHA Voices

July 1, 1999
President's Address
by Nitto Marquez

This summer presents some exciting changes and new beginnings for ACAS. I welcome the agency's new executive director, carefully chosen from a very impressive field of candidates and heartily approved by the ACAS board of directors. My congratulations and best wishes to (new ED) for a successful and productive experience at ACAS.

The recent annual general meeting brought us a number of brand new members to the Board of Directors. Although coming from diverse cultures and different professional and educational backgrounds, each and everyone nevertheless share the same commitment and dedication to the principles and goals as outlined in ACAS' mission statement.

As well, I would like to express my thanks and gratitude to the outgoing members of the Board who in the last few years have individually and collectively given of their time, talent and knowledge to ensure that ACAS fulfils its mandate of providing the best possible service to its clients and to the Toronto Asian community at large. It is a great honour and privilege for me to further serve ACAS in my new capacity as President of the Board of Directors. I am fully aware of the illustrious tradition of this position, most notably in the person of Dr. Alan Li, who has tirelessly acted and advocated on behalf of ACAS.

It is my intention to uphold the good name of ACAS and be worthy of this position. It is customary for the new President of the Board to outline his goals and/or visions for the duration of his tenure. Despite my healthy respect for established convention I choose nevertheless to refrain from making grand pronouncements or formulating lofty ideas. This does not mean however that I have no fond hopes and dreams for ACAS. I believe that the welfare and survival of ACAS does not rely on the visions and concepts of just one person. I recognize the very important role the board members as a collective play within the organization.

It is therefore my hope to build a strong and cohesive board of directors for ACAS, which I hope to achieve by forging closer ties between each member.

By recognizing our strengths and weaknesses, we as a group will be better prepared to make the right decisions for the general welfare of our agency and of the Asian people infected and affected by HIV/AIDS.

I also wish to develop a closer working relationship with the staff and volunteers at ACAS, and be more aware of the day to day process that keep the organization running. By becoming more aware of the daily needs and functions of the frontline volunteers and staff, and with the help and guidance of the Executive Director, I may be better equipped to make recommendations to the Board to ensure a positive and productive working environment for everyone here at ACAS.

Lastly, and with the help of the Board, the staff, the volunteers and friends of ACAS, it is my aim to establish stronger links with other related services and organizations within the larger gay community and establish new alliances within the Asian communities in Toronto. By cultivating new ties and friendships we increase our chances of long-term survival, and the increase in profile will enable us to reach more people with our message.

ACAS has for years been a shining model that many AIDS service organizations aspire to. It is my ultimate desire to see it become a model for compassion as well. Let us work together and finally bring the message home... that we provide the best possible care for our own.

July 1, 1999
Amalgamasian Address
by Nitto Marquez

Last June in Toronto we celebrated Pride and Remembrance. Hundreds of people gathered to honour and remember members of our community lost to the battle with HIV and AIDS. Thousands more celebrated one of the biggest lesbian and gay pride celebrations in the world.

Pride. A word as alien to some members of our Asian lesbian and gay community as the North American culture that they try to embrace and find a place in. In much of the Asian culture, homosexuality is one of, if not the greatest, crimes against the centuries-old concept of "saving face." I still remember with sadness my mother's response to my coming out. She told me it was the greatest shame that had ever happened in our family.

Twenty years later, her words still trouble me. More than a few out gay Asians have retreated back into the closet after being diagnosed with HIV to avoid further embarrassing and alienating their loved ones. Some have died keeping their double secret. Gay people move and lose themselves in the relative anonymity of the big city. A great number move into an established gay community for support and a sense of belonging. Some find it, others do not. How does one find support and acceptance in a community whose language they do not speak?

Many Asians with HIV and AIDS are further isolated simply because of a failure to communicate. How can they access quality health care after their diagnosis when they can't even communicate with their doctors? The medical terms and instructions associated with medication and side effects are confusing enough to a native English speaker. To those with a basic or almost non-existent grasp of the language, the process can be quite terrifying. The same language barrier prevents some from accessing government and other social services aimed at improving and prolonging the lives of people with HIV and AIDS.

The process of finding someone to intervene on their behalf, and at the same time preserve a sense of confidentiality, is almost too great a task. Some, with no permanent residency status to give them a sense of security, opt out altogether of any form of social and government support for fear of deportation. Remembrance? How does one remember the names of members of our community whose lives were deemed so shameful that they chose to remove themselves from their families without explanation for fear of being rejected by the people who mean most to them. "Died after a long illness...," or "died suddenly...." These are some of the words used instead of the A-word.

Most Asian families would rather hide behind these quaint euphemisms than acknowledge the gay lives of their sons and daughters. There is a park in the heart of the gay ghetto where a memorial stands in honour of those lost to HIV and AIDS. Among the hundreds on the list are but a bare handful of Asian names not because our community is lightly affected, but because almost two decades into this world-wide epidemic, the shame attached to it is still so great that people still prefer to die in anonymity and isolation.

I have sometimes been accused of being too vocal and forthcoming about my health status. Undoubtedly, some friends, and even some members of my family, would rather that I keep things a little more discreet. But my life as a gay man has been built upon this foundation: I am proud to be in a loving and nurturing relationship with a partner of 14 years and proud of my contribution to the most culturally diverse city in the world.

When the time comes, I do not wish to leave this life nameless. Pride and remembrance. As we celebrate the gay community's own cultural diversity, please take a minute to pause and reflect on the Asian lives lost to this health epidemic. By remembering those that have died and those that are still with us, we validate their lives and work towards permanently removing the shame that prevents us from remembering their names.

July 1, 1999
PHA Voices
by Nitto Marquez

I was diagnosed positive with HIV two and a half years ago. Despite all the optimistic news coming out of the World AIDS Conference that year, I believed there was nothing for me to be enthusiastic about. I had just taken the previous year off work to go back to school in order to strengthen my job marketability after a string of disappointing and low-paying jobs. With an alarmingly low CD4 count, and after over a month bedridden with a severe case of shingles that left my back disfigured, I did what a lot of people living on borrowed time do.

Despite the emotional roller-coaster I was going through, I was extremely focused on what I needed to accomplish. Terrified that I may not survive the next year, I began taking stock of my possessions and making a list of who should get what. I began preparing my family and friends for what I was convinced was inevitable, while fervently praying that I may be given more time to at least survive my elderly parents. My doctor recommended aggressive medication based on the much talked about "combination cocktail" therapy.

After a series of highly toxic combinations that left me weak and unable to function normal daily activities, we finally found a combination that worked!

After a about a year of this therapy, my physical and mental health vastly improved and my CD4 rose by seventy counts. A year after my diagnosis I was confident enough to start seeking new employment, and quickly found a position in a computer retail company. Looking back, it turned out to be an ill-advised move. After three months the stress of customer service plus the constant exposure to whatever flu or cold virus floating around eventually left me bedridden again, and my hard-won CD4 count was back to where it was the year before. I quit the job and had to slowly rebuild my health back up.

By this time, whatever little money I had put away had been eaten up by medical expenses, despite having a great percentage of the medical costs covered by my partner's health benefits at his place of employment.

A year and a severely depleted bank account later, the harsh realities of living on a fixed income started to take its toll on my mental health. The boredom of staying at home is just alleviated by taking long walks and visiting with an increasingly shortening list of old friends and acquaintances, some of who had stopped calling since my diagnosis, unable to cope with my preoccupation with mortality. The on-going financial strain precluded most of the diversions I used to take for granted: the trips to the movies on-a-whim are now curtailed and record shopping a rare, special occasion treat. Having grown up in a culture that equates success with a house with a big backyard and at least one automobile presents an added load to the daily strain. No house plus no car equals what?

Having had no visible source of income the last couple of years, some less than sensitive acquaintances not in the know have started asking my partner if I was being kept. Fighting words perhaps, but words that strike extremely close to home. It gets harder to regain self-esteem when my sense of self-respect is constantly called into question. I am sure it is no easier for my family who must constantly stand up and answer similar questions about this particular brother.

The concept of a sero-positive sibling is for most people harder to admit to others than the concept of having a gay brother. To their credit most of my family has been supportive, but I am sure there are times when finding answers to ease their concerns are foremost in their minds. The on-going concern about my own mortality takes me on a constant roller- coaster ride about my spirituality. In some ways the future, or lack of it, was clearer two and a half years ago than it is now.

The recent death of my father and the subsequent depression it brought on highlighted the on-going crisis of spirituality I hardly realized I had embarked on. Having been brought up in the Catholic faith where being gay is a mortal sin, I am constantly adrift, seeking the spiritual reassurance my soul cries out for. Unfortunately my quest had been recently derailed by the shortage of pastoral care available in the community.

The attempts to seek spiritual counselling for my depression about the passing of my father, and my own thoughts about my own eventual death produced no results. I was turned down by two local AIDS service organizations because they did not have a counsellor trained to deal with my particular kind of grief. A series of calls to the chaplain of a local AIDS hospice was never returned, and I am left relying on more pharmaceutical products to cope with the depression.

The ever-growing arsenal of medications have become a problem when travelling. A recent trip to South-east Asia was fraught with concerns about crossing immigration and customs and with fears about my luggage, and my two months' worth of medication, not arriving at the destination. A month or so into the trip, some of the medication started deteriorating from the heat and humidity, and the trip was cut short because of this new development. Living in a big city where help for AIDS-related concerns are more readily available, and where organizations like the Asian Community AIDS Services are working towards addressing the needs of other cultural minorities affected by HIV and AIDS, it is sometimes easy to forget that many other PHAs living in rural Ontario, for whom English is not the first language, have no access to some of the language specific services and information the smaller agencies offer.

Today the initial crisis may have passed, but the new developments in the long-term survival of PHA's present new chapters in the struggle to win against this disease. I am thankful to have ACAS to turn to for help, and am grateful to have this opportunity to share with you a first hand account of living with this epidemic at ground zero.