Being Alive; November 1993
Dana Gorbea-Leon

My name is Dana Gorbea-Leon. I am here today both as the Executive Director of Being Alive, a coalition of people with HIV/AIDS, and as a latino living with HIV.

I want to start off by saying what I'm not going to talk about today. I'm not going to quote numbing statistics or underscore the painful and indisputable facts and figures of HIV/AIDS in the Latino community. I'll leave that to the experts.

I'm not going to talk about the huge increase in HIV/AIDS among latinos, and the many reasons, historical and otherwise, why latinos have had limited or restricted access to medical and financial support and why, in the face of these increasing numbers, this is no longer acceptable. There are probably people here better equipped to talk about these issues than I.

What I'd like to discuss is what we, who make up the latino community and those of us who support the community, what we should be doing about these facts and figures, the numbing statistics, the increasing numbers. Moreover, I'd like to focus on one answer to the facts and figures, one answer to the increasing numbers. It isn't the only answer, but it's an answer that works, and therefore one that should be of interest to everyone here today.

Being Alive, for those of you not familiar with us, is an organization by for and of people with HIV/AIDS. As such, we are a unique feature of the HIV/AIDS community. In the natural history of this disease, there came a time when some of us decided to take back our lives from the medical establishment, to take back our lives from the statisticians and the epidemiologists at the CDC and the NIH, to take back our lives from all the different services providers who had sprung up out of nowhere to help us manage our disease, to take back our lives from every so-called expert who kept telling us what we should be doing with our lives at any given moment.

We learned a very valuable lesson. We learned that until we died we were very much alive, that until we died we could refuse to be a statistic or a number in someone else's charting of this epidemic, that until we died we had a responsibility to live the kind of lives we saw fit as opposed to handing them over to someone else to manage for us. We learned not only that we had a right to our lives but that we had to make a fundamental choice to be alive.

That doesn't mean we don't need help in staying alive, in maintaining our existence. Being Alive, as an organization, and people with HIV/AIDS, as a group, wouldn't exist if we hadn't had help from people outside our community. Some of those people are in this room today. But it's a question of taking responsibility for one's choices and one's life. Ironically, sometimes we need help from other people to become aware of just what these responsibilities entail.

Everyone can agree that choice and responsibility are great things to have and to exercise. But you can't ask people to make responsible choices when their choices have been historically narrowed and circumscribed narrowed and circumscribed to the point of having few choices or no choice at all in how they lead their lives.

And the fact is that when we talk about the latino community, we are talking about a population largely made up of immigrants, or the sons and daughters of immigrants, and therefore a people that for reasons economic and political have been historically disenfranchised and disempowered. That means an absence of choice. Again how do we ask people that have had so few choices to make responsible choices?

As I stated earlier, one answer is to teach people how to take back their lives. We have to teach people that even when circumstances are narrow and circumscribed, there are choices to be made, choices that have to be made. To do so we have to build or expand organizations like Being Alive, organizations that are by, for and of, in this instance, by, for and of latinos with HIV/AIDS. It doesn't mater whether you call this organization Being Alive or something else. It doesn't matter whether you give us the money to expand our services into the latino community or you give it to another organization to start anew. What does matter is that these kinds of organization have to be encouraged, that they have to be made possible.

There are two ways of doing that. Money and leadership. The power of the purse is an extremely effective means of bringing about change and alleviating hurt and suffering. Therefore, access to money, access that traditionally has been denied the latino community, has to be widened to include us. And we need political leadership. As public officials and community leaders, you have to create a space, a pubic space, within which these organizations can come into existence and flourish. You have to use the power of your office to persuade the latino community and the community at large of the absolute need of organizations like these to exist.

It is not HIV/AIDS in the Latino Community, as the flyer for this hearing advertised. It is latinos living with HIV/AIDS. It is our lives and it is our community. With your help, we may yet learn to take them both back.
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