The Challenges of Leadership

Larry Kramer at podium with The Village Voice Logo on the front

I had a difficult if not contentious relationship with Larry Kramer. His last words to me were “fuck you.” I carry them as a badge of honor. As a leader in the fight to end the HIV epidemic, my job is to speak out against injustice and to fight for the communities hardest hit by HIV. I hope I can make Larry proud as we move to the next critical phase of our work, but I doubt it.

What does leadership look like as we fight to end the HIV epidemic by 2030 while also learning to live with COVID? Obviously, we all play different roles. Federal leaders and health departments face internal restrictions that are not the same for community. Community leaders have a responsibility to tell their truth because not everyone gets invited to the table. I always tell my staff that, when they get invited, they must speak-up, not with their voice, but with the voice of community.


Last week I got an invite from Dr. Laura Cheever, the administrator of HRSA/HAB, to talk about HRSA’s plans to end the HIV epidemic. That is leadership: to reach out to community before they ask for a meeting. To all the health departments and federal leaders, community expects to be at the table and part of the solution. We want our input to be valued and acted upon. Too often community is seen as an afterthought, something to be managed. Believe it or not, we can tell the difference. Thank you, Dr. Cheever.

I also want to thank Rita Harcrow from HOPWA/HUD for taking the time to discuss their EHE efforts. As I mentioned, NMAC was really pleased that HUD was at the table. We believe housing is core to our efforts to end the HIV epidemic. Our ability to safely house and provide quality medical care and mental health services PWHs is key to our EHE efforts. Along those lines, we hope that HOPWA/HUD, SAMHSA, and HRSA/HAB will consider collaborative funding arrangements so these services can be better integrated.

We remind our federal partners that we are looking for syndemic solutions. Our vision is to end the HIV, STD, and Hepatitis epidemics. That requires collaboration across federal departments and agencies at a level that is unprecedented. Some of you are working together, but there are key players missing. Isolation that leads to depression means that mental health services are essential for many people living with HIV. How will plans incorporate this essential service? Agency plans are due to the White House sometime in March. Now is the time to speak up.

It’s more than being invited to the table. We also want to see community in senior leadership positions. Too frequently there is diverse community representation, except for the government employees. While I am very grateful to Dr. Levine, how many transgender leaders hold government jobs? How many people living with HIV? How many people from the communities hardest hit by HIV? From my experience, way too few. It is not a matter of affirmative action; it is the understanding that representation matters.

The main difference between me and Larry is how we approached these inequities. Larry hated injustice. He hated a world that treated him like a second-class citizen. His anger was his motivation to change the world. For me it’s about love. I love my constituents. I love people living with HIV. I love people who take the risks to be their true selves despite what society tells them. They are my motivation to fight. They are the reason I’m still here after all these years. The privilege of getting old is you don’t care anymore what people think of you. I have earned the right to say some difficult things and like NMAC’s founding board chair Craig Harris said in 1986 at the closing APHA plenary on AIDS, “I will be heard.”

 

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

Come to USCHA in Puerto Rico

I’m writing to invite you to the 2022 United States Conference on HIV/AIDS to be held in San Juan, Puerto Rico October 8-11 at the Convention Center. This meeting is NMAC’s love letter to the people of Puerto Rico. Between HIV, bankruptcy, Hurricane Maria, and COVID, it’s been very difficult. You may recall we were originally scheduled to be there in 2020.

NMAC (National Minority AIDS Council) is going to San Juan to:

  • Highlight HIV challenges in the Latinx community,
  • Bring much needed economic development to Puerto Rico,
  • Experience a city where English is the second language, and
  • Lean into Puerto Rican culture as a lesson on cultural sensitivity.

The 2022 conference theme is Luchando Por Nuestras Vidas (Fighting For Our Lives). It honors our past and speaks to the future. Unfortunately, luchando por nuestras vida is what too many of us do daily. We are all connected in our fight for a fair and just world.

Registration
Registration is now open. To be part of the conference block of rooms, you must register first. Early bird registration fees are $490 for NMAC members and $625 for non-members.

Scholarships
The scholarship section is live.  NMAC has committed to double the number of A&B scholarships. The majority of scholarships will be given to people living with HIV; however, there are never enough funds to cover all the need. NMAC will be transparent with our decisions and important demographic information will be shared in our newsletter.

Language Justice
The 2022 Opening Plenary will be in Spanish with simultaneous English translation. To end the HIV epidemic by 2030, NMAC believes our movement needs to not only understand, but also celebrate the cultures of the communities hardest hit by HIV. Latinx Gay men have surpassed White Gay men in the number of new cases of HIV. They are second in numbers only to Black Gay men in a race that nobody wants to win. We are going to San Juan to give attendees an immersive experience of the culture, music, food, and values of Spanish speaking communities.

Economic Development
Local businesses, especially those friendly to community, need our support and shipping to Puerto Rico can get expensive. NMAC is asking sponsors, exhibitors, and attendees to purchase locally when possible. Instead of shipping printed materials, NMAC will use local printers. Look for a list of vendors who are friendly to community to be posted on our website. If you need temporary help while in San Juan, NMAC is working with local CBOs to identify people living with HIV, particularly people with trans experience, to be hired as temporary help. As part of our fight for economic justice, temporary help will be paid at least $15 per hour. USCHA has a huge economic impact. According to the San Juan Convention Bureau, the meeting will provide jobs to over 1,000 people for over one month.

Puerto Rico Convention Center


The 2022 meeting will be at the Puerto Rico Convention Center. To be honest, I am not the biggest fan of convention centers. They can be too large and impersonal. However, it was the only space that could accommodate the meeting. At least this center is warm and inviting. No chicken lunches here. You can look for tostones, empanadillas, or mofongo. Music in the hallways will feature Puerto Rican artists including Bad Bunny, Luis Fonsi, Marc Anthony, Jennifer Lopez, and my personal fave Ricky Martin.

Hotel Accommodations
Multiple hotel blocks will be available for attendees. You must register to gain access to the official conference hotels. Rooms will be set aside in advance for scholarship recipients.


Most attendees will stay in one of two hotels. The Sheraton Puerto Rico is the host hotel and is located next to the convention center. Rooms at the Sheraton are $189-$229 per night (plus taxes). We also have a block at the Caribe Hilton. Rooms at the Hilton are $204 per night (plus taxes). The Hilton is located on the water a little further from the convention center. Buses will be provided. Hotel rooms are limited, so please register early.

COVID Protocols
NMAC is closely monitoring the conditions. All attendees are required to upload proof of vaccination one month in advance of the meeting. This information will be collected online and there are no exceptions because the space does not have the capacity to separate the vaccinated from the unvaccinated. Thirty percent of the attendees are people living with HIV and our movement has a responsibility to their health and wellbeing. NMAC will follow all local ordinances so there may be additional protocols. Unfortunately, NMAC does not have the capacity to do both an in person and virtual USCHA. Like everyone, we are trying to figure out how to live with COVID.

I’ve missed everyone. It’s been too long. Hopefully we can hug, laugh, and cry together again. We are more than a faceless movement; we are a family. A slightly dysfunctional family, but a family nonetheless. When the International AIDS Conference went to South Africa, there were plenty of skeptics. I hope this meeting can do for the domestic fight what going to South Africa did for our international efforts.

Gracias. See you in October.

Yours in the Struggle,

 

 

 

 

Paul Kawata
NMAC

The Summer of 1978

It was the Summer of 1978. I was a teenager coming out while spending my break working in San Francisco. This is my journey. Being a gay man/boy in the ’70s felt like being part of a revolution, to be in the vanguard of LGBTQ folks fighting to live our lives completely out of the closet. Back then Gay sex was our “fuck you” to the establishment.

The late ’70s was the height of the lesbian separatist movement. Yes, there was a time with some members of the lesbian community worked to create a world that did not include men, particularly straight, white, cisgender men. Gay men started building our own safe communities that included bars, restaurants, and bathhouses with an explosion of new businesses, jobs, and opportunities. It was the beginning of the community-led infrastructure that would serve as a critical foundation after AIDS. There was little to no awareness of issues impacting people of color. I was often an anomaly in a sea of White people. However, it’s not fair to use a 2022 lens on the ‘70s.

Gay men were divided between those fighting for acceptance by straight society versus those who wanted as much sex as possible. It was the heyday of bathhouses, backrooms, and glory holes. Honestly, it was lots of fun. 1978 was my summer of firsts. Going to my first gay bar, dancing with another man, marching in Pride, and my first real passionate kiss. He was the president of my fraternity, and I was in love.

This photo was taken at San Francisco’s Pride Parade. Published on the cover of the San Francisco Chronicle, it was how I came out to my Asian family and friends. As you can imagine, my mother was horrified. 1978 was also the summer I met David Goodstein (publisher of The Advocate), Jim Hormel (philanthropist), and Rob Eichberg (therapist and creator of National Coming Out Day), three men who changed the course of my life. They helped me see that being gay was about more than sex. My life did not have to be lived in the shadows of a closet. I could be the outrageous gay man I wanted to be. That was a revelation, completely contrary to all my Japanese upbringing. They helped me understand the importance of committing my life to something bigger than just me. Being gay was a gift and not the burden I was feeling.

AIDS completely changed the LGBTQ narrative. After my summers of love in San Francisco, I moved to Seattle for dental school. One fateful day, I read an article in the New York Native by Larry Kramer. It turned my life and the lives of people I loved upside down. Our community had to grow up and we had to do it quickly. Hard core lesbian separatists became caregivers for too many gay men. We came together because the world, particularly people in power, did not care about anyone with AIDS. There was no room for our sick. Many White gay men who thought they were being accepted into the larger society were in for a very rude awakening. For the first time they were treated like second class citizens and it made them mad, something very familiar to people of color.

I’m sharing my memories to remind us of who we were and the challenges we’ve overcome, to remember our courage, power, and strength in the face of adversity. In our many and various iterations as people of color, people living with HIV, LGBTQ, women, drug users, and sex workers, we faced what seemed insurmountable and survived; however, there are still too many causalities. As I look back from where I started, I am amazed what this little scared Japanese boy created. Our journey is not over. We still must end the epidemics of HIV, STDs, and Hepatitis, to commit our lives to something bigger than ourselves. And to look back to a life well lived.

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

National Black HIV/AIDS Awareness Day

On this National Black HIV/AIDS Awareness Day, NMAC remembers and honors the African American leaders who envisioned, built, and fought to create NMAC. Too many are gone and we don’t have photos of everyone. This year is our 35th Anniversary. We are here because, in 1986, Craig Harris, a founding board member for NMAC, stormed the stage and took the microphone at the APHA plenary on AIDS and declared “I will be heard!” As a Black gay man living with HIV, his rallying cry became our raison d’etre.

Don Edwards
NMAC’s Founding Executive Director

African American Members of NMAC’s Founding Board

Current African American Board Members

African American Staff

African American Community Advisory Members

NMAC is NMAC because of these leaders. Our history includes people living with HIV, ministers, gay men, lesbians, transgender women, transgender men, researchers, and executive directors, all fighting for justice for people of color within the HIV movement. They make NMAC a better agency and we are blessed and honored for their leadership.

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

Our Fight for Justice

The HIV movement has always been part of the struggle for civil rights. Back in the ’90s, NMAC worked with Mrs. Coretta Scott King and the King Center/The Center for Nonviolent Social Change to bring leaders from the Civil Rights movement together with the HIV movement. Mrs. King uniquely understood the importance of including our work as part of the larger struggle for justice in America.

As America celebrates Dr. King’s birthday, here is what NMAC is doing to keep his dream alive. In 2022, we will work to realign a portion of the Minority AIDS Initiative (MAI) back to its original congressional intent. NMAC will work with Ryan White Part A, B, C, and D grantee to address HIV stigma in the HIV workplace. The United States Conference on HIV/AIDS will highlight the struggle of the Latinx community when we meet in Puerto Rico. We will continue our fight for people over 50 living with HIV by expanding our efforts to bring their critical voices to Congress.  NMAC will work with the White House to review standards of HIV care, especially geriatric services. Look for a special announcement about a new program for Black Women.

As we work to end the HIV epidemic, HIV stigma continues to create barriers. Only half the people living with HIV are retained in HIV care. It is incumbent to build HIV services that work with and for the communities hardest hit by HIV. While there are many types of HIV stigma, NMAC looks at stigma through the lens of race. We believe race plays a critical role in the HIV stigma that impacts too many PLHIV. Until we address race and its impact on our work, we will never end the epidemic.

For Part A, B, C, or D grantees and their subgrantees, NMAC is offering free trainings (virtual or in-person), technical assistance, and learning collaboratives to address HIV stigma in the HIV workplace. Apply at TargetHIV.org/ESCALATE. Our work faces unique issues because so many employees are also living with HIV. Not only do we need address HIV stigma in our services, we must also be responsive in our workplace. This effort is a first for NMAC. Typically we would not work with specific Ryan White funded parts. However, it’s part of our HRSA cooperative agreement and speaks directly to our mission to urgently fight for racial justice and health equity to end the HIV epidemic in America. I know everyone is busy and overwhelmed with COVID, but I’m inviting Part A, B, C, and D grantees to work with NMAC to reduce HIV stigma in the HIV workplace. Please email Ken Pettigrew for more information.

NMAC is calling on Health and Human Services and the White House to bring a portion of the Minority AIDS Initiative back to its original congressional intent. Not all the money, but enough to start to provide racial justice to the communities in need. The impact of past funding decisions has decimated a once vibrant cohort of minority led HIV organizations. NMAC is calling for justice for the minority led agencies that closed when HHS changed the intent of the MAI. To be clear, justice is not equality. Justice is for communities who were disadvantaged because of systemic rules that minimized their value or contributions. The MAI is a clear example of funding that was set up for people of color only to be taken away when more money was authorized. I am very excited that Dr. Maya Rockeymoore Cummings has come on board as a consultant to lead our MAI efforts.

NMAC understands the complexities of using race as a factor in funding decisions; however, it is not impossible. Our fight for MAI justice is part of our commitment to keep Dr. King’s dream alive. HIV has an opportunity to impact more than our movement. Figuring out how to use race as a factor in federal procurement has ramifications way beyond our work. As we’ve seen with COVID vaccines, the HIV infrastructure can be used to build a better world.

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

WTF 2022?

I am at a loss for how to lead during what could be some of the difficult days. Six hundred thousand new cases of COVID per day. Too many friends are sick but luckily most are OK because they are vaccinated and boosted. It feels like everyone is going to get the Omicron. I remember that feeling during the early days of the AIDS epidemic. As a young gay man watching too many of my friends get sick and die, AIDS felt inevitable.  It was only a matter of time. Yet we didn’t give in, and we learned to fight back. What does COVID mean for the HIV community? How does our work fit into this new reality? How do you lead and work to end the HIV epidemic in the middle of the latest surge?

Here is what I am telling my staff: Scientists predict that the next few weeks will be some of the most difficult times we’ve experienced, with new cases regularly passing over one million per day. Personally, I think it’s impossible to get the real numbers because it is too difficult to get the necessary confirmatory tests. Between people who are vaccinated and people who got COVID, America might reach some type of “herd” immunity; however, that assumes there won’t be another variant. Right now, it is impossible to know what the virus will do.

Experts say that March could be the return to normal, but they also said that about the summer of 2021. This uncertainty makes everything difficult. Our movement needs a short-term strategy to manage the immediate challenges and a longer-term strategy that looks at ending HIV. In the short-term there is going to be lots of sickness, but hopefully not as many deaths. The HIV community must prioritize the health and wellbeing of people living with HIV, especially PLHIV over 50 who are immune compromised. It is impossible to know how many PLHIV are vaccinated. By my very imperfect calculations, if there are 1.2 million Americans living with HIV. 49% are either unaware of their HIV status or have fallen out of HIV care or around 600,000 people. That’s a lot of immune compromised people who may or may not be vaccinated. COVD disproportionately kills older Americans and the majority of people living with HIV are over 50.

In the short term that means everyone who is eligible needs to not only be vaccinated, but also boosted. That is the best defense we have against COVID. We may need a fourth booster, particularly for people who are immune compromised. NMAC will always follow the science. It’s time for health departments and community-based organizations to actively reach out to all consumers to ensure that they are appropriately vaccinated. We cannot wait for PLHIV to come to us. We need to go to them while also being sensitive to privacy and confidentiality concerns.

As we have learned with HIV, COVID isolation can lead to a sense of helplessness and depression. When you are sick or depressed it is hard to do anything, let alone take your meds.

In addition to boosters, our movement needs mental health check-ins. While we are zoomed out, one of the things I noticed at this year’s United States Conference on HIV/AIDS was the active participation of PLHIV in various lounges that the meeting offered. Like we’ve done in the past, there needs to be regular support groups (via Zoom) and virtual buddy programs that build connections and a sense of purpose.

PLHIV need access to technology to zoom for virtual medical appointments, and to connect with their case managers and peers. How can health departments and community-based organizations provide free access for clients? Because of COVID and the challenges of staying six feet apart, access to technology is not a luxury, but a necessity. The standard of HIV care needs to be expanded to include these lifesaving tools. If housing is HIV prevention, then so too is an iPad and internet connection.

The short term is all about boosters, mental health check-ins, and access to technology. The longer term (hopefully later this year) is still about ending the HIV epidemic. Work to end the HIV epidemic starts with reading the plan. If you don’t know what is in the plan, it’s hard to be part of the solution. Here is an insider’s piece of information: the White House will meet with various federal offices to ask for their responses to the Ending the HIV Epidemic and the updated National HIV/AIDS Strategy. Updated agency plans will be due in March. NMAC in coalition with other national partners will request meetings with the various federal agencies to discuss their updated plans. There are many new and important components that need to be appropriately reflected in these agency’s plans.

I am very concerned about the next few weeks. I worry about our physical wellbeing and our long-term mental health. WTF 2022. I hoped it would get better, now it just seems like a cluster f**k. What I’ve learned from HIV is that we are stronger together. During these very difficult times, it is important to remember that kindness is free.

Yours in the Struggle,

Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

A Love Letter to the Women of NMAC

I usually don’t share internal issues at NMAC; however, recently I had the pleasure of promoting Kim Ferrell to be NMAC’s Deputy Director for Operations, Alison McKeithen was promoted to be Assistant Director for Conferences, Shanta Gray was promoted to Senior Registrar and Meeting Planner, and Gabriella Spencer was promoted to be the Associate Program Manager. Women (cis & trans) are the heart and soul of NMAC. In a few weeks many of you will be at the 2021 United States Conference on HIV/AIDS and it is important to know who really makes things happen. Women make NMAC a force of nature and this is my love letter to them.

Women have always played a critical role at NMAC. Two of NMAC’s founders include Rashidah Abdul-Khabeer (formerly Hassan) and Sandra “Ms. Mac” McDonald. According to the African American AIDS History Project “Rashidah has spent most of her life in Philadelphia, where she grew up amidst the social change and political ferment of the 1950s and 1960s. She began to volunteer with Philadelphia AIDS groups, which were primarily oriented toward white gay men, and became frustrated with their apparent unwillingness to develop specific outreach and education efforts for African Americans. In 1985 she founded Blacks Educating Blacks About Sexual Health Issues (BEBASHI), one of the country’s first black AIDS service organizations.”

Sandra Singleton McDonald, affectionately known as “Ms. Mac” is President and Founder of OUTREACH, INC., the first minority community-based organization established in Georgia to provide HIV/AIDS and drug treatment and prevention services to African American communities. Established in 1986 out of the trunk of her car, the agency has served more than 6,500 clients for over 30 years. Sandra has also consulted with theNational Football League, National Basketball Association, and the National Basketball Players Association.

Some amazing women of historical note have been on our board including NMAC’s Honorary Board Chair Patti LaBelle. Ms. Patti was part of NMAC’s HIV treatment education campaign on PCP. She lent her voice, talent and money to help build NMAC. The legendary jazz singer Nancy Wilson joined our board in 2005. Her concert to celebrate NMAC ‘s 20th Anniversary is still on YouTube.

Mrs. Coretta Scott King attended both USCA and our Community Planning Leadership Summit. It was at the USCA in Atlanta that Mrs. King hosted a reception where the Civil Rights Movement saluted the HIV movement. She brought icons from her struggle to the Opening USCA reception in order to build bridges and understanding about the linkages between our movements. Mrs. King brought a voice of love and compassion for people living with HIV/AIDS at a time when too many other leaders had turned their backs.

Sometimes the rap on NMAC becomes about me and that is wrong. The agency is too diverse and too strong to be minimized in that way. I hold up these women staff, board, and community advisory members so that constituents can better understand why NMAC is successful. Women have always played a critical role at the agency. While there is not enough space to share everyone’s story, here are just a small fraction of the women who make NMAC the agency our movement needs to end the epidemic.

I want the world to understand who has the real power at NMAC and it’s not me. I am so grateful to stand with these women. Their support and critique make me a better leader. NMAC would not be NMAC without them.

 

Yours in the Struggle,
Paul Kawata

 

 

 

 

 

Paul Kawata
NMAC

Paul Kawata’s Fashion

This week we were to gather for the 2021 United States Conference on HIV/AIDS. While it was right to pivot to a virtual meeting, I’m still disappointed that we don’t get to see each other. Back in May, NMAC was very confident that we could meet in the fall, but the Delta variant kicked our ass. Hopefully we can meet in the Spring of 2022 (look for an announcement).

It would seem disingenuous to not state the obvious: with no in-person USCHA there’s no Paul Kawata fashion, no gaudy over the top jackets that can be spotted across the room. In the early days, there was a method to my madness. I used fashion to stand out from the crowd. DC has a very strict dress code of blue or grey suits. Everyone looks the same and very heterosexual. My clothes screamed “gay” and, back in the ‘80s, that was radical.

Because of my work in the movement, I was lucky to sit at the feet of one of the last great social doyennes of New York, Mrs. Judith Peabody. Judy committed her life to taking care of her friends who were dying of AIDS. With her Peabody pedigree and old family money, she forced open the doors of “social” New York. Her world did not want to talk about HIV. Judy’s actions raised a lot of concerns because “women of a certain social standing” did not hang with people like me. We bonded over too many friends who died too soon.

Judy showed me how fashion was more than pretty clothes. Her outfits sent messages of love and acceptance. She didn’t just wear Bill Blass to the Met Ball, she also wore Bill to Harlem where she volunteered at Harlem House. She wore Bill to her HIV support group for care givers at GMHC. Her fashion made people smile. The designer clothes, jewelry, and big hair brought joy and beauty everywhere she went and to everyone she touched. Judy once told me, “I am who I am wherever I am. I dress this way to go to the ballet and to Harlem.” Judy was my Auntie Mama. She introduced me to a world that was larger than I could have imaged. My over-the-top jackets are an homage to Mrs. Peabody.

Hopefully, this story made you smile. There really was a time when I was fun. I know it seems impossible now, but I swear to you, I used to be fun! I saw myself as an Asian Joan Crawford. If you don’t know who she is, look it up and get out of my face. Can you tell I’ve been watching and re-watching RuPaul’s Drag Race?

Missing people is hard. When I say I’m a little gutted, I mean it. I worry that COVID makes our work impossible. Okay, I said it. We are falling behind and our efforts to end HIV have stalled. It’s not our fault. Who could have foreseen COVID? While I understand the need to prioritize, I worry that HIV, STDs, and Hepatitis are going unchecked. It’s time to figure out how to live with COVID while ending multiple epidemics.

The Biden/Harris Plan to End the HIV/AIDS epidemic will be released around World AIDS Day. While NMAC has not seen the plan, our hope is that it will lead with race. I’m looking for a plan/challenge that is bigger than I am, something that will take teams of experts and community working together to solve, to be excited about the future and our work to end HIV/AIDS epidemic.

Back in the day, it was scandalous when I wore a purple jacket and no tie to meet President Obama. In a sea of uniformity, I stood out like the flower I am. Due to COVID I’ve not been shopping in a long time. In fact, I’m living in sweatpants. I don’t think I will ever wear slacks again, let alone over the top jackets. Recently I purchased my first pair of comfortable shoes that are not cute. They look like grandpa shoes, but I guess I am getting to that age. Thanks to the filters, I look young and refreshed on my zoom calls. The reality is far less attractive. Please be kind the next time you see me.

While not in-person, I look forward to seeing everyone virtually at the 2021 United States Conference on HIV/AIDS. There is still time to register. What else do you have to do? This year’s meeting directly follows the release of new EHE plans. It will be an important time to restart our efforts to end the epidemics of HIV, STD, and Hepatitis and to fight like hell for the living while never forgetting the shoulders we stand on.

Yours in the Struggle,

 

 

 

 

 

 

 

 

 

Paul Kawata
NMAC
*This picture of me and Judy was taken at a dinner that we hosted at the Library of Congress. The HIV community came together to celebrate the election of President Bill Clinton. Larry Kramer would protest at the dinner, but that story is saved for later.

 

Sharing My Pain

Over the last few months, I’ve had several significant losses. Normally, I would keep this personal information private. I shared my pain because too many of us are hurting. You are not alone. The world is crazy right now and it can feel overwhelming. I spoke my truth to shatter the stigma and discrimination that too often follows PTSD and depression. It is also my pathway to healing.

Thank you for all the kind messages of support. Reading your emails helped to feel less alone. Until I admitted there is a problem, it was difficult, if not impossible, to figure out solutions. Right now, it’s particularly challenging with so many unknowns. Is it me or is the whole world going crazy? Probably both. Even if you are perfectly fine, it is important to understand that colleagues, friends, and family are hurting. Empathy is critical, yet it is hard to be empathetic when the world feels upside down.

Just to be clear, I am not a therapist, but I do have one. I get one hour every other week to talk just about me and my fears. This is a privilege that is not available to most people and that needs to be fixed. I’m transparent about therapy to dispel the stigma and fear surrounding this topic. I grew up in a world where depression was viewed as a sign of weakness. Only rich White people had psychiatrists. I feel pain because I am a person of color living in America. Buck up and get over it. As a result, I spent too many years not addressing the elephant in the room. I’m in pain. The early days of the epidemic had taken their toll. I never took the time to reconcile what happened to me and my friends and to weep for all that was lost. There was a whole generation taken too soon.

Here I am, 40 years later, and I can still recall the deaths of too many people. The hospital rooms that had that awful antiseptic smell. The nurses who became my best friends as they made up a bed so I could stay in the hospital rooms of friends. Colleagues who died too quickly so friends could not say good-bye. Friends who lingered too long in pain, fighting for every breath. I was a kid in my 20s when the epidemic started, too young to understand the enormity of what was happening to me and my friends. Too naive to be afraid, I just wanted to help.

I share my story because COVID, Black Lives Matter, Climate Change, Abortion Rights, the Jan 6th Insurrection, and Immigration are creating another generation of people living with PTSD and depression. There are too many reasons to feel awful. The pain is real, and it may not go away for a long time. While I don’t regret what I had to do during those early days, I wish I had started therapy and building my pathway to healing much sooner.

For too long we’ve lived with the false paradigm that leaders must have it all together. It’s time to tell the truth: leaders can be great and fu**ed up at the same time. More importantly, there are people and medications that can help you manage the pain.

I did nothing wrong because I survived the early days of the epidemic. The pain and loss I experienced was real. I love and miss more people than I can remember. The world was awful during those early days. The fear and vitriol were real. I cannot unsee what I experienced. I can build a pathway to healing that starts with me sharing my story.

I am wounded. It is what it is. Sunshine is my pathway to healing. Too many from my generation are part of the walking wounded. Too many from this generation will soon join us. These are traumatic, fearful times. There are real reasons to be sad and afraid. Leadership can also be about telling the truth and helping the next generation move beyond the pain.

 

 

Yours in the Struggle,
Paul Kawata
NMAC

PTSD

Figuring out how to survive can be overwhelming. As I look back on my life, I see how the post-traumatic stress disorder (PTSD) of HIV still impacts my life. Combine that with the isolation and trauma of COVID, and my feelings of depression are real. Trauma informed HIV services are more critical than ever. Our staff, clients, and donors are all going thought it. How do you manage the PTSD of HIV in the middle of the COVID epidemic?

I thought life would start getting back to normal this fall, so the Delta variant has been a gut punch. With breakthrough infections and so many people unwilling to get vaccinated, I worry about the future. The worry can lead to depression because there is no end in sight. The excitement about vaccines has been tempered by the need for boosters.

I’m sharing my journey because there is so much stigma about depression and too often it goes untreated. I grew up in a family that believed depression was a luxury for the rich. Therapy was for people with money. Looking back on my parents, I believe the PSTD they suffered in the internment camps during WWII set the trajectory for their lives. To this day, life in the camps is not openly discussed in most Japanese families. As children of survivors, we have little to no information about what happened.

It’s time to take back the narrative. What happened in the camps to my parents was not their fault. What happened to my community at the start of the HIV epidemic was not our fault. What happened to the world during COVID is not our fault. My parents lived in shame with the burden of being Japanese when the US was at war with Japan. Too many gay men live in shame and take on the unfair burden that HIV was a punishment from God. Too many people will die from COVID because they don’t trust the government or vaccines.

As we fight our way back, the need for trauma informed HIV services is more critical than ever. We are a world in trauma trying to provide HIV services to communities who have been traumatized because they are different. Thank you Jeffrey Long for the infographic. It’s time to “come out of the closet” again. PTSD is real and its not our fault. I am crazy because of a chemical imbalance that was triggered by life experiences beyond my control. Too many people suffer from the stigma of living with HIV. This stigma can lead to isolation which is a pathway to depression. On better days I wear my depression as a badge of honor because it reminds me that I survived the early days of the HIV epidemic. The pain reminds me to never forget the people we lost and to fight like hell for the living. I’ve also learned that asking for help is not a bad or weak thing. There are healthcare professionals and medications that can make a difference. You are not alone. In my mind I will outlive COVID. Now I just need to convince my heart.

God is Love and Love is for Everyone,
Paul Kawata
NMAC

Paul Kawata