"AIDS is essentially a crisis of
governance, of what governments do and do not do to and for their people – we
have the drugs to treat HIV infection, we have the tools to confront the risks
that drive HIV transmission and prevent infection itself – what we don’t have
is national political will necessary to scale-up our response. We have demanded
too little from our leaders, excused far too much." Gregg Gonsalves,
speech at the 2006 Toronto AIDS Conference.
I became an HIV/AIDS activist in 1986
when I was in my twenties. Personal loss, anger, and a vow to see the end of
HIV/AIDS has kept me moving towards this goal for twenty five years. To be
young and idealistic and following a calling, so many have, it’s what young
people do, but what happens when the stakeholders are so affected they continue
into the years that follow? Strides are made along the way, small victories,
with as many setbacks. There is nothing more compelling than losing a love one
to a disease perceived as a moral justification to sin. It was the loss of one
special person that moved me into the realization of what social injustice is.
Up until that point, I had never been affected by anything so compelling as to
be driven beyond my comfort zone and shake my fist at the status quo.
The interesting part of my leadership is
that it came from a collective action organization. Many of the leaders of
ACT-UP Shreveport went on to become executive directors and project managers of
HIV/AIDS resource centers. It was a tricky migrating from fighting the system
to working to build a system. Leaders of a grassroots organizations experience
major milestones as their organization builds their culture and history.
Unfortunately, not every change process leads to permanent expected results.
This is where leadership skills play at major role in how leaders and followers
deal with setbacks and accomplishments. Change processes and change projects have become major milestones in
many organizations’ history.
Due to the dynamics in the external environment, many organizations find themselves in continuous change. For those who are new to leadership, building skills to face crisis’ that many times involved life or death to those they serve can be extremely terrifying. The scope reaches from smaller change projects in each department of the organization, up to organization wide transformation processes but effects many individual lives the most. Our motto had become, “Change is the only constant.” This
article will outline my first experience as a leader and an agent of change,
describe who was affected, where it took place, the change model that was used,
and how we rewarded failed policies and victories.
The Beginning
 |
| ACT-UP Shreveport at the Action on NIH |
AIDS Coalition to Unleash
Power (ACT UP) is an international direct action advocacy group working to impact the lives of people living with AIDS, (PWAs) and the AIDS pandemic to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. ACT UP was organized as a leaderless and effectively anarchist network. This was intentional on the founder of the group, Larry Kramer's part; he describes it as democratic to a fault. “We used a simple formula for recruitment, to a certain extent, this is how democratic politics is supposed to work in general. You convince people of the validity of your ideas. You have to go out there and convince people" (actupny.org, 1987).
My loss of a dear friend probably isn’t much different than every AIDS activist who is either infected or affected by HIV/AIDS. Those who are personally affected or traumatized, combined with a social environment, usually are people who will find themselves “answering the calling”. I found myself as one of five founding members of the newly formed ACTUP Shreveport, with the idealist notion that we would see the end of the AIDS epidemic.
ACT-UP Shreveport was considered one of the leading local
branches of the national network. Quoting from the National Institute of
Health’s history of HIV/AIDS website that features ACT-UP Shreveport, “The
original ACT-UP group from New York inspired numerous other branches
nationwide, as well as campaigning in their own states, local groups from
across the country attended major rallies” (NIH.com). Hundreds of people
locally responded to the call. Along with one sympathetic local physician, we
were able to bring forth the first HIV/AIDS resource center, The Philadelphia
Center (Philly) and clinic in north Louisiana, The Viral Disease Clinic at LSU
Medical Center. It was an amazing accomplishment for those initial six people,
two of which were diagnosed with AIDS, and three people who loved them dearly,
and the very compassionate doctor, Marcus Spurlock (D-Demaree, 2011).
Part
of ACT-UP Shreveport’s agenda was to assist in acquiring funding for an AIDS
Resource Center. As we lobbied and protested at the state level, we eventually
saw funding available for the center we envisioned. As many activists, I chose
to work within the system and not protest against it. With funding available, lower
income clients would receive their medication, housing, and other basic needs.
It was a victory in our eyes. In the early years, HIV/AIDS took many lives due
to the lack of antiviral medications, Social Security set up harsh restrictions
disallowing those infected to receive disability income unless they were near
death. More than often, people were too sick to work, therefore too sick to
afford medication, food or housing. The need for ACT-UP Shreveport, The Viral
Disease Clinic, and the Philadelphia Center in Shreveport, Louisiana, was growing
expediently week by week and month by month.
The Organization
The Philadelphia Center’s mission is to provide supportive services for people who have AIDS and who have contracted HIV as well as prevent the spread of HIV with education and prevention programs. The center also works to improve the quality of life for those who have contracted HIV. Several of the ACTUP Shreveport members went on to help build the Philadelphia Center from the vision to a grassroots organization. In an era of stigma and fear, there were many obstacles to over come. We were determined as a grassroots organization to overcome the barriers before us and reach the mission of the organization.
People Centered Change
People centered change
alters the behavior and skills. For there to be people centered processes,
communicating, motivating, leading, and interaction within the group must be
ongoing (Dougherty, 2002). As leaders, encountering
answers to solve problems, and educate internal and external forces in order to
build the organization. Open communication between the different entities .opened up many questions that would be addressed before
making any steps towards building the structure of the organization.
Leading Strategic Change
The first step was to research
foundations and federal grants that would provide funding in these areas. Once
national and community foundations were identified, the process of application
submission and grant writing began. The Philadelphia Center was able to acquire
the new Ryan White funding the federal government was issuing to assist those
living with HIV/AIDS. With the Viral Disease Clinic newly formed, clients could
be segregated from other patients at the hospital and not withstand further
stigma and scrutiny. This was a major accomplishment for clients. Once someone
tested positive for HIV antibodies, we could work together getting them into
the clinic for follow up tests and then back to our case managers for other
needs such as housing and basic needs.
The criteria in most grant applications are there has to be evidence of
collaborative efforts with other community agencies. This ensures that the work
of a nonprofit will have cross beneficially effect with more than just one
agency’s demographic. This was a major instrument in bringing in other local
agencies who were dependant on grant and foundation funds. Once other agencies
realized they could document and profit from collaboration with the center,
they publicly accepted the organization, and in turn public opinion began to
shift. This is how we were able to motivate others to join us in acceptance
within community agencies and with individuals and fostered collaboration and
we were aspiring others to achieve. In the beginning, The Philly was looked at as a model
HIV/AIDS organization because of the history we had established, building it
from a vision into a grassroots HIV/AIDS organization.
Change
Model
There were two change models applied to
achieving establishing the “Philly Center.” Kotter’s Eight Step Change Model
was used initially. Midway through the change process the Tipping Change Theory
was applied. The first discussion of the change model will be Kotter’s Eight
Step Change Model and the steps taken.
Kotter’s
Eight Step Change Model
The first step
we took in the Eight Step Model was to create urgency for change. This began
when the Board of Directors, Executive Director, and employees of the Philly
tapped into the intellectual capital of the
shareholders and employees by brain storming different paths to take when
scouting out new income sources. We then went to external forces by inquiring
from those affected by the disease, sister organizations, and other community
agencies to assess and evaluate the needs. According
to Kotter, for the change to be successful, 75 percent of the organization
needs to buy into the change (Farris, et al, 2009). We were able to
become more accepted in the community, being invited to come and teach HIV
transmission and prevention within the community and in return began to see
community financial support, as well as forming a powerful coalition locally,
regionally, and nationally.
As
we learned to lead in the community, we were able to understand what our vision
should be. By creating a vision and urgency, those affected could internalize
the change. Each time we went into the community, we would communicate our mission
statement. We spoke of it often, internally and externally.
Removing obstacles
Once
the vision buy in was complete, obstacles to the change became apparent. We
were able to identify the change leaders and what their roles would be to deliver
the change. We set up a system to recognize and reward people who were making
change happen. Case managers were given bonuses if they exceeded their monthly
quota in units billed to the Ryan White funding source. HIV testing counselors
were rewarded bonuses based on the number of people they tested in the
community. Once we identified those who were resisting, we worked to remove
barriers to the change, which was establishing the resource center’s place in
the community, the state, and the country.
Create Short-term Wins
Nothing motivates more than watching the success of change. One way to do this is to create mini goals and short term wins. Some of the ways we created short term wins was to find full proof projects that were perceived as non-threatening to those involved. The organization grew slowly and did not jump into goal targets that were expensive. As funding came in, each department grew until other projects like the Mercy Center, a residential facility; The Mercy Center for homeless people living with HIV was acquired by a local hospital system.
Building confidence as Leaders
Kotter stated that change projects fail because
victory is declared too early. Real change runs deep and there are no short
cuts to lasting change (Farris, et al, 2009). As leaders of the Philly Center,
we did this by analyzing what went right and how to improve the change. We
continued to remove obstacles and set goals to a path of achievement. Once the achievements toward
change were met, we engrained it as part of the organizations culture. We made
sure constant efforts to ensure that the change permeated
through every aspect of the Philly
Center. By doing this, it gave the change a solid hold in organization's
culture.
The
Role of the Leader
There are three leadership
qualities of leadership; visionary, participant, and
transactional, which produce effective organizational change (Manz, et
al, 1991). When leaders act as advocates for change,
they won’t allow the process of change to falter from lack of attention. They
are willing to invest their political capital to rally those affected. They
must be the role model for those in the organization. They must be the decision
maker and take responsibility for those decisions. They must be the voice, motivator,
and enforcer. Others in the organization need someone to look up to while
processing the change they are going through. A good leader will be assessable
to them making the process seem easy.
I am convinced
because we came from a collective action activist background, we were
instinctively grounded in these leadership qualities. We were visionary; we
still are. We led by example; we had only ourselves to follow up with tasks.
The day we heard Ryan White funding was granted a second funding cycle, we
celebrated the victory and then went out and distributed condoms at truck stops
and gay bars. We led by being followers and in return, rallied many volunteers
and supporters.
Lessons
of Leadership Learned
I continue to learn many lessons as a leader, but in the early
days of ACT-UP Shreveport and the Philadelphia Center, experiences that were
new stuck with me the most. In the beginning many emotional components were the
important characteristics of leadership. I was desperate for knowledge about HIV/AIDS for effective
decision making and relied on others to help me with it. I learned there was
more than one right solution and learned to evaluate facts from various points
of view. I learned to listen to clients, their needs came first, and I saw
anti-gay and anti-AIDS policies as something to rebuke, not something to bow
to.
The
most important thing I learned, the importance of transferring ownership to
everyone I worked with and to proclaim everyone as hero. This in my opinion is
the most important precondition for success; the buy in and involvement of
others. I learned to hate the word subordinate and replaced it with co-hero.
Everyone in this battle is a hero, the struggles are beyond belief, with the
backdrop being the Deep South. Commitment can only be gained when others are
given the opportunity to give. That leads me to the final lesson; “The Ask.” Asking
for what you need to make others lives better. It is a gift to give and most
people want to give, they just don’t know how. Everyone needs to know their
contribution is important and valued. When they do, they own successes everyone
has worked together to achieve.
Conclusion
As one of the leaders of ACT-UP Shreveport and The Philly Center, I
learned how to progress from one milestone to another
by creating a plan to overcome barriers that mapped out structure and time restraints.
There were many plans. Work plans that were subject to change based on whatever
crisis happened that day. Service plans for clients to meet their needs, even
though ultimately those needs were never met because they died too soon.
Funeral plans and helping grieving families and partners through the months
that followed. Plans were the only way we were going to meet the demands of so
many variables.
Barriers
to implementation were preoccupation with the day to day details, lack of
teamwork, conflicting priorities, and funding issues. I learned that execution
takes time, especially when grant requirements usually demand evidence based
outcomes that must be documented over time. By implementing the “tipping point”
theory of change, which was scribbled on our things to do chalk board, improvements
that appeared to be small, functions that needed to empower consumers, were better
executed to reach our mission; to serve more people with greater outcomes.
Over thirty three million men, women, and children are thought
to be living with HIV. Even with the strides made today, discrimination,
stigma, ignorance and the lack of effective preventive measures are still huge
barriers that stifle reaching the ultimate goal; the end of HIV/AIDS. We just
can’t afford the enormous medical expense and the loss of life. Twenty five
years and counting, and the battle is still as enormous. I always knew it wasn’t going to be easy. I always knew it was
going to be worth it.
References
Against The Odds:A New Disease. (n.d.). Retrieved
from
http://apps.nlm.nih.gov/againsttheodds/exhibit/action_on_aids/new_disease.cfm
Dougherty, D. (1992). A practice-centered model of
organizational renewal through product
innovation. Strategic Management Journal
(1986-1998), 13, 77-77.
Retrieved from
Farris, K. B., PhD., Demb, A., Janke, K. K., PhD., Kelley, K., & Scott, S. A., PharmD.
(2009). Assessment to
transform competency-based curricula.
American Journal of Pharmaceutical Education, 73(8), 1-158. Retrieved
from
Philadelphia Center: Northwest Louisiana HIV/AIDS
Resource Center. (n.d.). Retrieved from
The Siren's Call: Agent of Change- HIV/AIDS Activists Demand the End to the Madness. (n.d.). The Siren's Call. Retrieved
from http://d-demaree.blogspot.com/2011/12/agent-of-change-hivaids-hope-for-and.html
