5 Immediate Steps I'm Taking After HealtheVoices17

So, I'm finally back from #HealtheVoices17 and after a full day of rest, I am still at a lost for words on how to summarize or describe my experience there. There were tears, inside jokes, tons of laughs, and a lot that I learned that will enhance the impact I have in my social media advocacy.

One thing is for certain in the goal I set for my attendance at HealtheVoices this year. I did not want to be the same person leaving that I was coming in. Coming in, I was stressed from family issues, burned out from advocacy/policy work, and feeling overall depleted so I was running on autopilot. The first day activities with the #PurposefulConnections HIV Summit knocked all of that out the gate as soon as Rhonda Waters of Johnson & Johnson's HPI (Human Performance Institute) had us re-evaluate our values and get to the core of why we do advocacy in the first place. So, walking out of the conference on our last day Sunday, I was definitely felt back to a empowered place of authenticity. I felt more rooted in my passion.

I just want to share with you five things I have immediately implemented or an in the process of adding to my advocacy toolkit.

1. Add a medical disclaimer to your posts or website.  I spoke with Benjamin Di'Costa, a fellow HIV advocate and among many other wise social media tips he gave, I realized this one was such a simple one and I had overlooked it. It protects advocates, while we are patient experts, we are not always medical professionals and are only speaking from our lived and learned experiences. There are a lot of examples throughout the internet that can be tailored to fit the needs of any advocate. I have now placed this disclaimer throughout my website because what I may advise may not always be what I know for each individual person that reads my content. I want us both to benefit from this relationship and for no harm to come to either of us. 

2. Making videos is easier than one thinks. When I attended a session on creating impactful video for advocacy last year, Josh Robbins had amazing tips on scripting, lighting, audio and apps to use that were super inexpensive. Cameras intimidate me eventhough I know that using video is effective, so I didn't fully implement his tips or take them seriously for my work at the time. This year, he gave great tips on the same issues, but hearing it again as well as other attendees experience using what works for them, I have now found that I can afford and accomplish bite size videos that will help me in HIV advocacy. Lilly Stairs even posted in our HealtheVoices Facebook page, this great app in iOS called Clips that does closed captioning so followers that are hearing impaired can access content. It's FREE! It's EASY! It's FUN! I'm starting out with that one and hope it takes me to another level.

3. Legislative advocacy is critical. In a session by Type 1 diabetes health advocate Christel Aprigliano and Public Affairs Council expert member Nick DeSarno, a wealth of information was shared on how to effectively speak with your congress members, their staff and if they refuse to host public forums, there are effective ways to "out" them that will help bring the importance of your cause to light. One thing I think is effective is to attend their campaign events, town forums or party specific fundraisers and ask for a photo opportunity with them. Be sure to wear a shirt that speaks to your cause in a bold statement, then post said photo to social media with whatever policy oriented hashtags or messaging is best suited for the position you want them to consider for your cause. I'd even go the extra mile and send them a copy of the photo as a thank you card. Being reslilent in policy work is the key. Decisions in legislation are not made overnight, building relationships is key - and never, ever give up.

4. Protecting your followers is just as important as protecting yourself. This was probably most impactful for how I view my social media presence. I never have a problem stating how naive I can be and this was one of those times my ignorance was evident. My method of defeating HIV stigma is to put it all out there and dare anyone to say anthing, not taking into account that some things I post may be triggering for others. It is my responsibility to be considerate to that. I'm grateful to Kirsten Schultz and Dr. John Grohol for sharing tips on how to handle that during our Privacy in the Public Eye panel.  For example, if you are posting an image of your lab work experience on Facebook, the appropriate way would look like this:

There are many variations of what words can be put in place of "trigger warning" such as specifically what is mentioned, i.e. "may contain an image of blood", "warning: do not read if needles make you uncomfortable", etc. When you place a specific amount of space in a Facebook post, it automatically hides it from the viewer with a "See More" prompt which I used to find annoying, but now see how it's purpose is incredibly beneficial to protecting my audience. 

5. Not being a 501c3 does not limit my advocacy work. Thanks to Janssen Pharmaceuticals, Inc., the Community Foundation of New Jersey and online patient advocates everywhere - we can now apply for a charitable grant that engages, informs and empowers patients in our community as well as combatting stigma and isolation. The grant sizes will range from $1,000 - $5,000 and will be held to a project completion in September 2018. This was amazing news as I (like many others) are full of ideas, but don't have access to funding and feel limited in my advocacy reach. There are certain restrictions and qualifications with this grant that you can read about here. I am incredibly grateful to the staff of Janssen and The Community Foundation of New Jersey for providing this opportunity to so many amazing advocates that are truly further empowered to change the world. 

This is a short list of things I have learned and put into practice in the past two days after HealtheVoices17. With the network of friends I've established, I know that there will be more and so far I feel more deeply rooted in the work around me, thank you just isn't enough.

 

 

Countdown to #HealtheVoices17


It's that time of year again!! I'm so excited and I honestly only get excited for one event of the year as much as this and that energy is reserved for Thanksgiving. I guess you can equate these as the same since I am TRULY thankful for my attendance, participation, and opportunity to experience this.


So, last year I got to have this amazing experience with health bloggers and social media experts from all over the nation. Around 80 of us gathered in downtown Chicago for #HealtheVoices16 and I can tell you it was nothing I expected. You can read about it here.

Now, I'm here to write about #HealtheVoices17 and from an even more cool and different perspective. I have had the honor of working as an advisory panelist AND a presenter to help plan the conference and offer input on what will make this year one to remember in providing skills and resources to health bloggers and social media experts again. I mean, it's no coincidence that someone with a grassroots organization called emPOWERed Legacies, works to help empower patients, #amirite?



So, in case you didn't feel like clicking on the link to my other blog and opening another tab (I have multipletabitis, so I understand), here's the rundown:



What: HealtheVoices - conference designed and built to meaningfully empower and develop leaders in patient advocacy across the nation and various health conditions. This year's theme "Together We Thrive" stems from last year's theme of "Deeply Rooted" where bonds and connections were formed that stretched across health issues, personal experiences and varied diagnoses to unite the participants in a collective experience of empowerment. This year we will show the various and powerful ways that we thrive through all of our health conditions even more so than last year since a LOT of the sessions were planned by and led by the patient advocates (the experienced experts) themselves!



Who: Johnson & Johnson's medical branch, Janssen Pharmeceuticals, Inc. and other organizations (listed below) sponsor this impactful and innovative event

When: April 20th* - April 23rd
*The official conference begins on the 21st, but the day before, small groups of advocates from specific health conditions will meet for a pre-conference summit to kick off their experience. It's going to be a family reunion for the #HIV tribe! I cannot wait! 

Where: Swissotel Hotel in Chicago, IL



Why: In case this isn't emphasized enough, this conference is a gathering of health patients that are experts and advocates in their field of health condition. These conditions range from Inflammatory Bowel Disease, Psoriasis, HIV, Mental Health, Type 1 & 2 Diabetes, to Breast Cancer, Alzheimer's Disease, Rheumatoid Arthritis, Heart Disease, and Multiple Sclerosis (and more). This is an opportunity for the patients of these conditions to gather with other patients that utilize social media to advocate for their community and be a "healthy voice" to inform, motivate, and connect about the ins and outs of their health.

Don't be misled, these advocates aren't just posting and sharing scientific data, which is a strong and useful component to understanding health conditions and how they impact any community, but these are movers and shakers, mothers, daughters, husbands, fathers, athletes, teachers, wonder women and supermen all trying to navigate life and live it to the fullest. They give you a glimpse into their life, what wakes them everyday, what lifts them up to speak out, what carries them through their diagnosis and demonstrate what living really looks like. I want to share these individuals with you, but since I don't have permission just yet, follow #HealthEvoices17 and you will meet them through their social media as they post.



When we gather this weekend, we will be speaking with one another, learning from each other and channeling the collective energy that medical and science professionals need to continue making the advances they have in improving our health. To me, this conference is an exclusive opportunity to put a spot light on the issues that we face as patient advocates. Some of those issue topics are:

  • Maintaining privacy while being a go-to person on social media
  • Dealing with stigma
  • Energy management
  • Using data to be effective in social media
  • and much, much more!
There will also be moments for fun, connection, networking and relaxation. This year will be the first ever Open Mic night where patient advocates will get to express themselves through their talents as well as group dinners where we will fellowship and break bread and getting to know one another better. It's going to be fun on epic proportions and I cannot wait. 

You'd think as excited as I am I would have started packing by now, right? 

Feeling left out? Have symptoms of FOMO? If you couldn't be a part of the in-person experience of HealtheVoices, fret not because participants will be live streaming the sessions and you can definitely follow the hashtag #HealtheVoices17 through all social media platforms as well as directly from @healthevoices accounts.

Thank you again to Janssen and supporting sponsors FacebookhealthlineWebMDWEGOHealthWisdo, and YouTube for making this experience such an enriching one for all participants. Thank you for setting the bar for health companies to meaninfully value patients for their experiences and give them a platform to magnify their voices. 



Now, time to go pack!


Here We Go Again...Update

I'm trying to not be overwhelmed, frustrated or hard on myself for neglecting my blog. I do not own the monopoly on being busy. I think it's a rites of passage for people to be able to have so much on their plate, they can say that they are too busy. It's not healthy though. So with that being said, I'll give a quick run down on why I abandoned another attempt at a series blog, dust my shoulders off and move on to my current life.

Last blog post, I was on a roll focusing on using prompts to get my thoughts out and was pretty satisfied with the inspiration it generated in spite of the political cess pool I was surrounded in after our 45th President was elected. I was also just starting out at the new Florida Community Organizer for The SERO Project to help modernize HIV specific laws that were being misused to prosecute people living with HIV based on their status and not the actual transmission of the virus. That included a lot of traveling, meetings, conferences, webinars and coffee. During this time, my paternal grandmother passed away suddenly. Actually, my last blog post was a week before her 79th birthday and a month before her passing. I flew out to Arizona to be with family that I hadn't seen in over 20 years. It was heartbreaking, healing and horrible. I might blog about that later, since I did make away with my grandmother's favorite coffee mug! So, through the Thanksgiving and Christmas holiday I was an emotional wreck and come New Year's I was using what little energy I had left to not be depressed. I attended a women's retreat where I was slotted to speak on HIV criminalization; however was the one who walked away feeling that I had embraced and learned new things. I will definitely blog about that soon. My time there is what kept me from going under, pushed me into seeking a professional mental health counselor and brought me to a place of healing and peace. So, I started the year off with a vision board and a word for the year, "SURRENDER". When I tell you about the year I've had so far, you'll get it. It's not about giving up, trust me.

So, there you have it. I abandoned the health writer's challenge not because it was a challenge, but life was just loud and in the way. I might revist those prompts just to say I completed it and I might just move on. There is so much in my life that I am learning about what makes me operate. I feel that I have to stop waisting time with looking back and feeling incomplete. I need to look back to know how to move forward. Just small glances to remind me how far I've come and how much closer I am to fufilling what purpose I have on this planet.

I wouldn't be me if I didn't post something amazing and random!

My amazing is that I am in love with our new family car, Ford Escape. I've always wanted an SUV that wasn't too big and it's changed my life.

My random is that I have a new clothing obsession thanks to my twin friend. I've become a LuLaRoe junkie. I only own one piece to date but I have already found my unicorn piece, just can't find it in my size. This has happened in a span on two weeks max. I fought it as long as I could and then I went to an online album party by the amazing Amy Ball and got my first Amelia. OMG! A dress with pockets, I cannot resist. Cannot. Then I'm attending Twin Friend's party at the end of the month as well as hosting my own with my longtime MySpace friend Mahealani Maes out in CA! I'm sure there will be more spiraling from that!

Ok, so thanks for those that have stuck around and wandered back to my posts squinting through the dust to see I'm still here. I'll be working on rebranding and making this more interactive instead of like a journal. Which reminds me of another reason I haven't been around...this INFJ thing can be heavy ya'll.

*gigles, sips coffee, skips away*

xoxo
www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies



12 Women + 12 Months = PWN Policy Fellows



I think this accurately expresses the excitement, honor and joy I felt when I received an email from Arneta Rogers, (pronounced ARR-nee-tuh) Positive Women's Network - USA Policy & Advocacy Manager. I distinctly remember I was having a pretty fabulous day as Florida HIV Justice Coalition celebrated their HIV modernization bill SB 625 had just passed the Criminal Justice committee with a unanimous vote. I was back in my hotel room with my daughter who was with me on Spring Break and decided to check my email before the end of the day. Disregard the 3,380 unread emails - a lot of them are list serv chain responses.



This cannot be my life. There were 40 amazing, talented and dedicated applicants. Out of them, I was chosen to be among twelve great women that are ready to do the work and take names later.

The process to apply really happened for me at the last minute. PWN kept announcing it and then someoine mentioned in an email non-related to this that they hadn't seen an application come in from me yet. I was stunned and kind of laughed it off. I was scared to make the time committment because SERO is my priority and while I knew that these two opportunities would go hand in hand, I didn't want to stretch myself too thin. Then another PWNer mentioned to me in passing that she thought I should apply. She said, "Don't think about it, just do it." So, that's exactly what I did.

I told myself, if this is meant for me, then it will be. This year whenever I have been nervous or apprehensive about taking a leap of faith, I look up at my vision board to remind myself how confident and inspired I was when I made it. The entire right side of my vision board has phrases like, "Leading woman", "StrongHer", "She's the Boss", "Build Your Dream", "Nothing For Us Without Us", "I am Enough" and images of Michelle Obama, Janelle Monae and I even put a image of myself standing among them because I stand on the shoulders of greatness. Looking at that board told me that I could accomplish something great with this fellowship. I don't know what that is yet, but I know I will be prepared to try.

I hit send on the application and didn't give it another thought.


Until I received an email asking me to prepare for a video interview.

A what, now?

My luck, this would be me...


However, I knew and was comfortable with my interviewers Arneta and Cammie. They asked me questions that made me dig deeper to my WHY I wanted to be a part of the fellowship, what my plans were for my future with the training I'd be given and other questions that helped me own my truth about how little I knew about policy work, but how much I knew this fellowship would not just help me but my community. I plan to bring all the knowledge I gain to others.

After the interview, again I put it out of my head beacuse I didn't want to stress too much about it, but inside I really was on pins and needles to know who was selected.

And then, that beautiful day came when I got the email and I screamed with joy and felt all warm inside. The next question was...who else is going to be in this inaugural team? I'm looking forward to working with the amazing 12, getting to know those that I haven't met before and work with those who's reputation I've admired from afar. I can't believe I'm a PWN Policy Fellow. You can meet the others here.


We are also assigned a coach and by coach, I mean Rock Stars of policy and advocacy work. Suraj Madoori, Kathie M. Hiers, Jessica Terlikowski, and my coach, Kimberly Miller are all people I want to be like when I grow up. With their expertise, committment and resources each participant in this fellowship will be equipped to do just that.

While I was assigned to focus on the Affordable Care Act and Medicaid, everything somehow overlaps and we will be cross-trained in a lot of topics. What are some other issues I want to work on? 

  • For my state: 
    • the modernization of our outdaed HIV statutes (long-term goal)
    • Medicaid & the Affordable Care Act (FL was one of the southern states that did not expand Medicaid)
  • For my personal passion:
    • Women's reproductive justice, comprehensive sex education in all schools
    • Economic equity among women living with HIV
We will spend the next year on webinar trainings every other week, including supplemental trainings in between. We will participate in the PWN Policy Workgroup that meets once a month to discuss local and fedeal policy issues; have reading and writing assignments from the webinar trainings; scheduled conference calls with our coaches and we will have a face to face meeting and training mid-way through in Washington D.C. Oh and the super kicker that I'm excited about is that we get to take the one issue we are passionate about and find an organization through our coach to work with that organization in bringing about effective policy change. Talk about being the hands and feet to the work! Woooo!

Lastly, not only do I get to work with some of the fierecest women in the field, but we get to be coached by influential change makers. I am so honored that they will be investing time in us for a year among their busy schedules. 2017 has me feeling like Beyonce. Seriously.






xoxo
www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies

AIDS Watch - How Did I Get Here? Part 2



So, I've filled you in what AIDS Watch is all about, but in case you forgot, it's the premier gathering of advocates and people living with HIV from all over the nation for a high impact policy traninng on key issues impacting people living with HIV and arming them with resources to have dialogue with their elected congress people on what they should do about it. But then, it's so much more than that! It's what an empowered legacy looks like! It's what never giving up and using the collective power of voice to create change looks like. It's presented by the Elizabeth Taylor AIDS Foundation and AIDS United and this year featured more than 650 people from 34 states, DC and Puerto Rico to continue sharing their truth and enact their power in their communities.

Let me tell you, being around that many amazing, passionate and determined people is something you can get high off of. It's an energy that pulses through you stronger than espresso. It's a sense of community that is as valuable as family. It's a collective heartbeat of solidarity to create change, speak truth, honor life, act up and fight back!

I am still trying to figure out how I got here, even though I've reflected in a brief timeline before, I am still in shock that this is the work I get to put my voice to. Policy work. Woah.

If you had said to me three years ago that I'd be involved as a leader in my community to work on modernizing Florida's HIV Specific laws, I'd look at you in complete shock. 


But here I am. Doing the work, learning the stuff, making the sausage, herding the cats, speaking the language...you get it. And now attending a major policy issue based conference...amazing. As a scholarship recipient, I knew I was going to take full advantage of this opportunity and honor the space I was in even if I couldn't believe I was in it.The guidelines to apply for a scholarship to AIDS Watch were pretty straightforward, the application process simple and the requirements to follow through, fair. 

Day 1 - So, I arrived in DC and immediately met up with a advocate newbie Lindsay, in baggage claim. This girl...I have to tell her story for you to understand why she rocks my world. I met her at the PWN Speak UP Summit last September. She was brand new to everything and had only come across this particular conference because she Googled "Upcoming AIDS Conferences". In the beginning of our session, we went over disclaimers of disclosure. Pictures would be taken to document the event and if you didn't want to be in these pictures, you'd put a green sticker on your name badge. She immediately asked for one. I don't blame her, she had no idea what to expect. Then we kicked into our session with different breakouts led by women living with HIV. We talked about dating and disclosure, we talked about criminalization, we talked about being a voice when you're scared and what leadership looks like for young women living with HIV. We shared, we cried and evidently we inspired. By the time we got to our first break at lunch, Lindsay walked up to me with her green sticker in hand and then walked off to sign the photo release paper. She was done hiding and I was in full on "proud momma" mode. I don't even know if I directly had anything to do with that moment but the fact that she included me has bonded us. So, it was a joy and blessing to start off this conference with her (which she later jokingly handed me another photo release sticker, it's our thing now)

Next, my co-worker and brilliant friend Tami Haught came through baggage claim excited to embrace the cool 45 degree weather that this Arizona born, Floridian resident was not happy about. 

I know that's rain, but there's a theme I'm trying to stick with, Carry on.
We then grab a taxi to our host hotel, only to realize that because our group of 600 (take that Sparta!), we have to wait for our rooms. So, we turned the lobby into one big family reunion! It was the who's who of HIV advocacy and brilliance. Lindsay kept saying she was sitting with the "cool kids". When you realize that ALL of us are the cool kids, where else would you be? I connected with some first timers from Tennessee, re-connected with people I knew by name but not in person, caught up with people that inspire me and make me want to push harder and then our rooms were ready. We were each assigned a roommate as part of our scholarship recipient requirements. When I checked into my hotel room, my roommate hadn't arrived. Lindsay was staying at a hostel so she hung out with me until she had to check in later that night. Tami vanished into thin air so she could crash in her room since she hadn't slept in a few days. 

We then headed to the United States People Living with HIV Caucus reception to kick off our few days together. We recognized some of the AIDS Watch Leadership Award Recipients, and suprised my awesome boss, the creator and mastermind behind The SERO Project and POZ Magazine (and so many other accomplishments), Sean Strub. The USPLHIV Caucus worked behind the scenes to honor Sean with the "Persistent Advocate Award" and recognized him for not just pushing through years and years of hard work but for bringing countless others into the fold as well. We closed the night with Naina Khana, Executive DirectHER of Positive Women's Network and her amazing energy to rally a crowd. When she leads this chant, I literally am ready to break out and run (and I run for no man) to victory!

Lindsay and I then realize we have hit our wall in hunger and are desperate for food beyond the reception's hors d'oeuvres spread. Not wanting to walk too far and just wanting to sit and relax, we head to the Hilton Garden Inn across the street for great service, delicious food (crab cake on point) and relaxing environment. Afterward we go back to my room, Lindsay grabbed her things and got an uber to her hotel and I settled in for the night. 

But then...my roommate came!! A young New York native with an AIDS Service Organization fellowship, she was a doll! We chatted and I brought her up to speed so she knew she didn't miss anything major and the rest is a blur because tired hit me hard and an early day was ahead of me.

Day 2 - This was the day where we would examine the purpose of AIDS Watch which included an overview of our policy briefs on The Affordable Care Act (including Ryan White Programs & Other Health Reforms), Housing, Quality Sexual Health Education, HIV Criminalization and Funding for the Federal Response to the HIV Epidemic. With these issues protected and funded, we truly can reach the goal of an AIDS Free generation. Our morning consisted of various speakers highlighting the importance of this, the poitical landscape we are in now (and have faced in the past), as well as what our Hill visits and state team orientations would look like. Of course, experienced another war cry by Naina Khana, then broke for lunch and meetings with our state delegations.

For me, this is when things got crazy and real at the same time. Because of the size of our group of advocates, the set up required an overflow room with a monitor connected to where the main stage was. Tables were designated with variousd states on them but many people didn't know that until lunch. We ended up with at least ten Floridians, our Hill guide Isaiah Wilson from the National Black Justice Coalition, his co-worker Trinice McNally and our AIDS United Hill guide Matt Lasier. Isaiah was amazing at getting us motivated and prepared to speak with our members of Congress and their staff and he made the experience so much fun. We connected because there are some initiatives NBJC have planned for in Florida and HIV criminalization in the future. After we discussed who was going to work on what topic of policy we then broke out for our hosted meetings and networking sessions.

Well, not before PWN had to shake things up with a group photo, which always include chanting and singing of some form. "ALL WOMEN, ALL RIGHTS!"


We are a force to be reckoned with. Try us. More about that in another blog!

As an employee of The SERO Project, I had the honor to be in the HIV criminalization session and discuss the sucess and challenges Florida was experiencing as well as any advice to new advocates wanting to tackle HIV criminal law modernization in their state. Our room was packed with people crowding the door, sitting on the floor and taking everything in. Other advocates spoke on their experiences as well from Pennsylvania, Ohio, Indiana and South Carolina. 

 

From there since the schedule was packed with so much information and I was beginning to feel overstimulated, I chose to step away from our sessions, review the packets we had been given and focus on some self-care so I could be present the next day. I have to say, it's taken some years of me crashing and burning to realize how important it is to do this. If it's printed on an agenda for me to do, I don't normally take it as a suggestion, but look at it as a requirement, ultimately stressing myself out. I mean, who wants to miss sessions on the Souther HIV/AIDS Strategy Initiative when you're from the South (that session overlapped with mine), or Black Advocacy Networking when you're a person of color? OR how to build an AIDS Watch at home when your state is currently working with legislators to modernize your laws? There was something there for everyone, but no way to do it all. AIDS United has been intentioinal to re-create as much as possible on their website to direct those that couldn't attend to the resources provided at each session. So, winner, winner; chicken dinner!

The day was then closed out by a cluster of events including The Positive Leadership Award Reception where Bre Campbell, Daniel Driffin, Dr. Carrie Foote, Sen. Christopher Coons, Rep. Bill Pascrell Jr., and Rep. Ileana Ros-Lehtinen were honored by the Elizabeth Taylor AIDS Foundation and AIDS United. There was also a viewing of MTV's SHUGA Down South with a panel of the actors and film team fostering dicussion. Lastly, an impromptu gathering/reception for the Prevention Access Campaign's U=U messaging that embraces that "the scientific evidence is clear. Someone who's HIV is undetectable does not pose an infection risk to their sexual partners." It was so wonderfu to gather and celebrate one another in a space of excellent acheivement.

But then hunger ensued and I found Lindsay once again about to chew her arm off. So we tagged along with a crew of hungry advocating misfits to Firefly and had a spread of chicken mole tacos, fried bbq clams, and burgers.



This is the part of the night I call, eat, laugh, crash repeat. Another early and long day was ahead.

Day 3 - Here's my immediate reaction to my experience captured by The Positive Women's Network and highlighted on AIDS United's blog. Woah. 

A First Time Peek from the Hill at AIDS Watch 2017

Just to highlight some surrounding information:

  • We had a morning group photo and rally, until the rain came. Unlike some outreach events I have worked in the past, the rain means nothing! March on soldier!
  • Capitol Hill is literally a hill. I did not realize this until of course I was half way up. Thank God for comfortable shoes.
  • In meetings with members of Congress on days like this (these meetings were pre-scheduled), there may be last minute changes and people may hi-jack your thirty minutes to spend 20 minutes talking about their state issues. Rude, but I get it. Get in where you fit in.
  • There is a buzzer/clock in some Congress members offices that goes off when they have to go to the floor to vote. Watching this on TV when the tally of who votes Yes or No shows on the screen, I always wondered why the room was empty or had a small group of legislators milling around, how they were determining when someone voted. I now know. They literally run over the House or Senate floor, vote and leave. I witnessed this in my last scheduled meeting with Rep. Darren Soto. His staff was so friendly and funny while I waited.
This experience could not have been made possible and fabulous without the following agencies and organizations. 



AIDS Foundation of Chicago | AIDS Resource Center of Wisconsin | AIDS United | amFAR | Bristol-Myers Squibb | The Elizabeth Taylor AIDS Foundation | Gay Men's Health Crisis (GHMC) | Human Rights Campaign Foundation | Janssen/Johnson & Johnson | Legacy Community Health | Merck | NAPO Pharmaceuticals | National Alliance of State & Territorial AIDS Directors (NASTAD) | National Black Justice Coalition | National Minority AIDS Coalition | NC AIDS Action Network | Planned Parenthood | Treatment Expansion Access Project  | US PLHIV Caucus


And lastly, but definitely not least. For those of you wondering why in the world I have a Mean Girls theme throughout the images in this blog post...

The Elizabeth Taylor AIDS Foundation has a team of ambassadors all committed to the mission of providing grants to domestic and international organizations that service efforts for treating people living with HIV and AIDS. While they support marginalized communities, they are also breaking ground with support to innovative HIV education and advocacy programs including efforts on HIV criminalization.

I tell you this because as I sat in the overflow room of Day 1 listening to various presenters acknowledge the work that has been done and the work still ahead of us, a team of ambassadors was recognized in the room. This time includes Elizabeth Taylor's grandchildren and great-grandchildren (who I greatly look forward to meeting in person one day) as well as Chandi Moore (xoxo), "Trans-Diva" and bestie to Caitlyn Jenner on I am Cait and Daniel Franzese, best known for his amazing smile and giving fans of Mean Girls one-liners to live by.


While we walked the Hill to meet legislators, we stuck to our schedule not knowing if other advocates from other topics or states would tag along with us. So imagine my joy and suprise when I walked into the office of Rep. Debbie Wasserman Schultz's and see Daniel chilling in the lobby. The. Nicest. Guy. Ever. I asked him how his comedy show went the night before as one of the advocates I had dinner with was invited to go but didn't know if she could make it because it was late. I then confessed to him that it was 13 year old daughter that convinced me to watc Mean Girls and it was one of her favorite movies (mind you, she was 1 when it debuted). He then handed me a "House of Glen Coco" sticker which made my insides happy, but I kept it professional. Ok I fangirled a little, and then lovely Lindsay (not Lohan) took this pic of us:


I did later on get caught up in my nervousness of being around him as an ambassador and Rep. Wasserman Schultz's staffer (who is awesome and super attentive) because we were going to tag team the discussion of HIV Criminalization. When I mentioned it to her staffer Kaitlyn, she told me that they had just signed on as co-sponsors to the federal bill that Rep. Ileana Ros-Lehtinen & Rep. Barbara Lee introduced on March 26th called the REPEAL HIV Discrimination Act (H.R 1739). 

REPEAL HIV Discrimination Act (Repeal Exisisting Policies that Encourage and Allow Legal HIV Discrimination): This bill is no cost legislation that would ask the Attorney General, Secretary of Health & Human Services, and the Secretary of Defense to work with state stakeholders to review laws, policies, and cases that impose criminal liability on people living with HIV; develop a set of best practices for the treatment of HIV in criminal and civil committment cases; issue guidance to states based on those best practices and finally monitor whether/how states change policies consistent with that guidance. 

When Kaitlyn told me Rep. Wasserman Schultz was already on board, I gushed "That makes my job easy (as I handed her my card), thank you very much" and then yielded the floor to the next topic for the next advocate. Daniel and I high-fived and then it dawned on me that he might of have more to say in that moment as he is the ambassador for not only the Elizabeth Taylor AIDS Foundation but for Lambda Legal too! I later saw him having a brief moment with Kaitlyn and felt relieved that he seized the opportunity, but continued to kick myself for being so nervous I overlooked him. I'm sure he didn't give it a second thought, at least I hope he didn't. It was just so awesome to stand there with him representing the same issue. 

So, that sums it up as one of my favorite HIV advocacy moments ever - AIDS Watch 2017. I look forward to attending next year and seeing what progess has been made, especially in the days of resistance.

Have you ever attended AIDS Watch? Did you even make it to the end of this blog? It is one of my longest posts ever (I apologize). If you made it this far, which celebrity would you love to change the world with? Could you maintain professionalism or would you fan-out the entire time?



xoxo
www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies

AIDS Watch - How Did I Get Here? Part 1


What's an AIDS Watch? No, it's not the new installment to Apple products. And no, as someone asked me at the airport, it is not a vigilante group that literally watches for people living with AIDS. Good grief, #45, look at the confidence you give to ingorance. Just look at it. 

No, AIDS Watch is the premier gathering of advocates and people living with HIV from all over the nation for a high impact policy traninng on key issues impacting people living with HIV and arming them with resources to have dialogue with their elected congress people on what they should do about it. But then, it's so much more than that! It's what an empowered legacy looks like! It's what never giving up and using the collective power of voice to create change looks like. It's presented by the Elizabeth Taylor AIDS Foundation and AIDS United and this year featured more than 650 people from 34 states, DC and Puerto Rico to continue sharing their truth and enact their power in their communities. Here's a clip of the legacy legend herself, being highlighted as our torchbearer.



Powerful, right? What a way to be remembered. This made me want to do some reflecting. I know where I want to be someday, but to ensure that I get there with my behavior and dignity in tact, I found that for this phase of my life, I'd reflect on how I got here in the first place. 


So, as of August 2016, I am the Florida Community Organizer for The SERO Project. My job description is to go out in various communities in Florida and educate people living with HIV about the laws throughout the nation and specifically Florida that are being wrongfully used in criminal prosecutions, either under HIV specific criminal laws or under general criminal statutes. I'll explain more about HIV criminalization later. The education is part of the strategic planning for work that has been the current that has moved legislation in Florida to modernize our laws and promote a more public health friendly frame.

How did I get here?

May 2016, HIV Is Not A Crime II training conference with The SERO Project, Positive Women's Network and many other sponsors including our host organization Thrive Alabama gathered nearly 350 advocates and people living with HIV in Huntsville, AL for a national dialogue on what their state has in place as law, the successes of other states (Iowa & Colorado) on their modernization of these laws and provided skill based training to equip advocates to return home and make things happen. It was here I presented for a conference on something beyond my story. I was more than a person living with HIV, I was someone providing insight and knowledge that would promote dialogue in various communities and get people to understand their "WHY".

How did that happen?

February 2016 after prompting from various advocates in other states, I submitted my first ever in life abstract for a conference. I remember being so uncertain and afraid that I was waisting time of the people evaluating and planning HIV Is Not A Crime II, because I was inexperienced. Then I received an email saying it was accepted. What? Wait, let me go back and be sure that was meant for me!

It was.

In my application, I asked that if I was selected to be paired with someone of experience that would co-sponsor because while I believed in the activity I had planned and drafted, I was not going to get up in front of a room full of experts and facilitate it myself. Nope. When I received a follow-up email that the unicorn of HIV advocacy, Olivia Ford was going to be my co-presenter, I then realized how real this was. We planned calls and drafted slides to develop "Being the Change You Seek in a Resistant Community", which I then was allowed to present with her two more times at the Positive Women's Network - USA Speak UP summit and Positive Living Conference 19, both in Ft. Walton Beach, FL. By the way that averaged a total of 650+ people I encountered.

How is this happening?

November 2015, an invitation was sent out to various advocates living in Florida to have discussion on what strategic plan could take place in Florida that could change our laws. I remember that meeting like it was yesterday because I had no idea what was going on through half of the conversation. But I learned the power of my not knowing what was happening because it prompts me to ask questions. It prompts me to dig deeper than what other people in the room are focusing on. Remember that, it will come up later.

I say all of this as an intro to empower people to stop underestimating who they are. What you think is a weakness might be the very thing that will launch you into your purpose. What you think is a flaw, might be a characteristic someone of influence and power is looking for. What you think is holding you back might be what needs to be unleashed so that you can change the world.

Image result for you is smart meme

I thought that being a person that always had questions and alternative solutions to how things are done was annoying. I felt like if I brought up a topic or idea that was not on a planned agenda, then I shouldn't speak. Then I had to learn to understand the concept of having a seat at the table. If space has been created for you, fill that space. No matter what the intended purpose is for you being there. It could be that someone simply remembered you from a previous encounter and thought you would be a good fit. Honor that. Don't shrink yourself.

Your invitation to the table could be because a quota had to be filled. I have often been the youngest, the only woman or the only person of color and sometimes all three. That fueled my motivation to make the best of this time at the table. Regardless of what brings you there, always use it as a catalyst to get another seat at a bigger table. If there is dialogue being had around a topic you have little knowledge of, do not be afraid to politely say so. I have often asked for clarity of a situation and put it on my certainty I was understanding what others were saying, by rephrasing the main point of the topic. If I missed my window to ask for clarity, I wait until the close of the meeting if this isn't provided in writing sometimes and ask the facilitator to reiterate what our individual tasks, if any are. There are many ways to make your presence known. You don't have the be at the head of the table to have an impact, but if you're not at the table my friends, you are definitely on the menu.



So that is how I got to AIDS Watch in Washington D.C. Next post, I will tell you all about what I experienced there. I can tell you one thing, it was nothing anyone could prepare me for.
Stay tuned, tales from DC coming soon xo

xoxo
www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies



HAWMC: Day 5 - Speak Up, Speak Out, Speak Life!


This is my 3rd year attempt to do this Health Activist Writer's Month Challenge and see it all the way through the month of November. Third time is a charm, right? I have a lists of prompts, I can do this. I will do this. So far, so good since I"ve made it to Day 4 - that's a first!

Each day, WEGO Health, an awesome empowerment network of over 100,000 health activists, posts a prompt and health activists around the world reflect, write and post their experiences with their health in response to these posts. If you've read this far, I thank you. You'll be reading a lot about HIV for the next 25 days. Let's do this!




Living with #HIV has truly changed who I am as a person as far as the way I think, the way I respond to the world and the way I allow the world to impact me. Social media has played a huge role in that. My old MySpace blog was where I first spread my wings in engaging with an audience on HIV. The love and support I received through that platform was overwhelming. It also became a form of my healing. Then MySpace was no longer and I had to adapt. In the day of fast-paced, instant gratification social media, I've adapted to expressing myself on various platforms. It's helped me not just amplify my voice but the hard work of countless others, generating a collective impact on the world. 

Twitter - in my opinion and my little use of it, I think it's the most limiting of expression that I prefer, so I maintain my interest by being a re-tweeter. 140 characters or less gives me anxiety, but when it's important or I want to be the first to say it, I make it happen.  

Instagram - probably my most favorite format as I have two accounts. I love speaking through photos or giving my interpretation to a photo quote. The ability to be able to cross post onto other social media platforms makes it extra fabulous. I do wish that Twitter wouldn't make Instagram shares an outside link though. I also find it's easier to push followers to your other social media platforms when you cross post from Instagram, especially with the hashtags. I have specific ones I use for my advocacy consulting page, feel free to use them when sharing my blog! #empoweredlegacies (name of organization) #embracehealing #giveinspiration #livevictorious (slogan) #SpeakUp #SpeakOut #SpeakLife (slogan/motto/mantra) #missempowered (alter advocacy ego)

Facebook - I love and prefer to share through my emPOWERed Legacies page. Being in the public eye and not wanting to delete anyone, it's been difficult for me to set parameters as I built my following so I have family mixed w/ advocacy peers and people I meet at events add me as well. I'm public about a lot, but there's a LOT I also keep to myself, so my original intent to have a Facebook account to keep up with family sometimes gets lost in communicating my work efforts as well. It's ok though. As long as the message gets out and people actually check on me outside of social media, I'm good.

Oh and I love me some Pinterest, but I don't use that to amplify my voice; however now that I'm blogging more, I really should. That's my safe haven on the Internet. I can fantasize, be in Spain, have a thinner waist, cook amazing meals and be socially amazing all while wearing my pajamas eating peanut butter out of a jar. 

I have a YouTube account but I don't have the things I want or the space to do videos the way that I want - yet.

I'm debating on a SnapChat, the filters do look temptingly fun . I'm debating on Facebook Live but my luck, something embarassing would happen that I wouldn't be able to edit. I'm debating on podcasts or BlogTalk Radio, but I think I will stick with what makes me comfortable for now, and if needed, as I always do I will adjust accordingly.

What's your favorite method of letting your voice be heard? Are there any that are useful that I failed to mention? Thanks for reading! Feel free to comment and share, share, share! If you know of other ways I can amplify my voice, let me know! Co-blogging is also fun, let's make it happen!


xoxo
www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies

HAWMC: Day 4 - Dear Kamaria, You Have HIV and it's OK.


This is my 3rd year attempt to do this Health Activist Writer's Month Challenge and see it all the way through the month of November. Third time is a charm, right? I have a lists of prompts, I can do this. I will do this. So far, so good since I"ve made it to Day 4 - that's a first!

Each day, WEGO Health, an awesome empowerment network of over 100,000 health activists, posts a prompt and health activists around the world reflect, write and post their experiences with their health in response to these posts. If you've read this far, I thank you. You'll be reading a lot about HIV for the next 26 days. Let's start, shall we?


So, my diagnosis day...was interesting to say the least. Moreso, the circumstances leading up to it, not so much how I was diagnosed. If I could write a letter to myself for that day, knowing all that I know now...hmmm. I like this prompt because it doesn't ask if I'd change my diagnosis - and for that, I'm glad, because I wouldn't. Changing living with HIV would change who I am today and I love myself WAY more today than I did then. I fought hard as hell to be the Kamaria I am today. So, anyway, here's my letter:

Dear Kamaria,

You just became a mother. Life is looking pretty scary right now and adding this diagnosis to the mix is really going to change your life, but not in the way you may think. You are still beautiful. You are still worth the love you crave. You're daughter is going to be an amazing and better version of you. Believe it or not, living with HIV will actually show you who you're real friends are. There are going to be times where you will question if someone is reacting to you a certain way solely because you are living with HIV, and there will be times when physically you aren't going to know if your immune system is suffering or if you just have a cold. The amazing boyfriend you have now, he's a catalyst in your life to remind you that life is not over and that everything that makes you a woman will be appreciated, valued, cherished and honored. 

Here's some things you may be shocked to know...

  • One day, you're going to realize you are the change you've been waiting for and you're going to speak out. Doing this, will cause some people to leave your life. Oh but beloved, the room they make for all the amazing people is going to BLOW. YOUR. MIND.
  • There's always going to be a fight. If it's not against the stigma, it will be with the insurance companies. If not them, it will be agencies that provide services. If not about you, the fight will be for someone else to be delivered to a place of empowerment. Pick and choose your battles, know you're victorious. Beloved, you are MORE than equipped to handle this.
  • Your values are going to change. Things you believed to be right and true before were based on what you were taught, experienced or exposed to. You are now walking into an opportunity of enlightenment to know the world for yourself and how you want to live in it according to YOUR beliefs. Think about it, an abortion made sense to you at one time, in spite of what you were raised to believe. This doesn't make you a bad person, this makes you human. It's what you do with those beliefs that shape who you are. Continue to love, continue to not cast judgment on others and continue to learn.
  • You are going to see pockets of this world and be recognized for things you never even thought of. A passport is in your future beloved.
  • Hug your family more - especially your grandmother. 
  • People are going to judge you - but guess what? They will do that no matter if HIV is in the mix or not. Your skin is thicker than you realize. Bless them with your amazing smile and keep it moving.
  • Right now, you think you're going to have to take a ton of medications. Honestly, because of scientific milestones, that's true at first. You are being diagnosed in the cusp of some amazing breakthroughs with treatments. So, stick to what they prescribe, go to your labs and fight for the doctor you're comfortable with. Ignoring your health, ignoring these letters of HIV will not make it go away. Trust me.
  • That fight I mentioned you'll be in earlier, don't be freaked out by that. Others in the fight will hear your battle cry and they will support you. They won't always look like you, but you have a common bond of solidarity with them that can't be broken.
  • Please remember to breathe. You're a single mom with a lot of goals. Trust the opportunities that come your way, but don't forsake the memories you'll have with your baby girl. You'll blink and she'll be an adult. 
  • And girl...you're not fat. Keep it that way by speaking life over your reflection in the mirror. Be intentional about what you put in your body. It's ok to love fries, but don't let the fries love your thighs. Virtual 5Ks will become a trend and the medals will appeal to your distraction by shiny things. Do them.
  • Any doubts you have about your family loving and supporting you, wash it down the drain. Learn the basics of this diagnosis, breathe and let them know you're going to be ok.
  • I love you. God loves you. You are enough.
Now, don't cuss out Dr. Jardine. She's new to this too. Your mom is going to worry, but you will find strength together. You are not going to die from this anytime soon. So, cry when you need to, laugh more than once a day, sleep in when you need to and know that you're doing the best you can. 

Love, 

You.

Me as a new Mom, 2003 a few weeks before my diagnosis.

So, that was intense to write.Thanks for reading. Feel free to comment and share... I actually didn't go back to edit like I usually do. I want this to be the real deal of what I'd say to the 21 year old, single mom terrified of life, me. It's amazing to place myself back in that space and be aware of how amazing life is now. My mental health therapist will be pleased with this blog post. What would YOU say to yourself at the dawn of your diagnosis? OR if you don't have a diagnosis, what's a point in your life that you felt a shift for a huge change? What advice would you give yourself, knowing what you know now?



xoxo

www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies

HAWMC: Day 3 - Quote, Unquote


This is my 3rd year attempt to do this Health Activist Writer's Month Challenge and see it all the way through the month of November. Third time is a charm, right? I have a lists of prompts, I can do this. I will do this.

Each day, WEGO Health, an awesome empowerment network of over 100,000 health activists, posts a prompt and health activists around the world reflect, write and post their experiences with their health in response to these posts. If you've read this far, I thank you. You'll be reading a lot about HIV for the next 28 days. Let's start, shall we?



My quote is actually from myself...Yeah, conceited much? I'll explain...

"Knowledge may be the power, but the application of knowledge is the cure." - Kamaria Laffrey


February 2007 was my first time ever publicly sharing my story. I was at Hurst Chapel AME Church and it was their National Black HIV/AIDS Awareness Day Town Hall. The local paper came to my house to interview me, people were telling me how brave I was and how inspiring I was. This continued happening, to my delight because I felt like I was spreading awareness to get people tested and not fall into the same blissful ignorance I lived in when it came to HIV prevention. All was well until after a couple of years, I ended my speech and during Q&A, a woman stood to tell me that I was an inspiration and needed to get my story out to more "young people" because "knowledge is power."

Well...



True, but why limit knowledge to just young people when HIV knows no age, gender, race, religion, career, etc., and if I'm such an inspiration, which in the correct context of personal application is a verb; what exactly have I inspired one to do? Get tested? Gather these young people that need more knowledge to fuel their power? I was conflicted by this popular quote by Francis Bacon and the context in which it was used towards me. 

I responded to her with this analogy (and I'm paraphrasing because I've said this in many settings in various ways, but this is the gist):

"Knowledge may be the power, but if I KNOW that I am supposed to wear a seat belt in spite of my safe driving because there are other drivers on the road, yet I don't 'wear the seat belt...where is my power? If I KNOW that condoms and having an undetectable viral load eliminate my risk of transmitting HIV to someone else but I don't do either...where is my power? We KNOW a lot of things in our lives, but if we don't APPLY what we know, we perish - physically, emotionally, socially, spiritually, mentally, etc. The application of knowledge is the power, simply knowing is never enough. Plus, we must share what we know with others and not hoard it to ourselves, (therefore, why I speak about my personal experience of contracting HIV to anyone who will listen)."



I got a soft applause and a few nods of agreement after I said that, but no one has engaged me in dialogue that I am wrong (not that I'm trying to be right, but I am trying to prove a point) and I feel strongly about this concept that I have engraved it in the very fiber of being an HIV advocate. I apply this to more than just HIV work. 

I can't just complain about change, I have to BE the change.

I can't just say I am gifted or blessed, I have to walk worthy in that by sharing my talents with others and using them to fulfill my purpose in this world. 

I can't just look at a cupcake and not lick the icing off the top, I have to devour it's buttercream exquisiteness...



Ok, that last one took a weird sugar deprived turn, but you get the point. I hope.

So,there you have it. What's your favorite quote? Or what's a cliche or saying that drives you crazy because people use it out of context? I have a whole list of HIV stigma based ones...but we can talk about that another day. 

Thanks for reading - please comment and share...I want to hear from you! 

xoxo

www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies



HAWMC: Day 2 - Trust the Process


This is my 3rd year attempt to do this Health Activist Writer's Month Challenge and see it all the way through the month of November. Third time is a charm, right? I have a lists of prompts, I can do this. I will do this.

Each day, WEGO Health, an awesome empowerment network of over 100,000 health activists, posts a prompt and health activists around the world reflect, write and post their experiences with their health in response to these posts. If you've read this far, I thank you. You'll be reading a lot about HIV for the next 29 days. Let's start, shall we?




So, I am part perfectionist, part procrastinator and slight overachiever. Meaning, if the project I want to complete is not purely inspired and utilized in the moment, I will overthink it, take as long as possible because I don't "feel the time is right" and ultimately never complete it because I'll wait for the next "big moment of inspiration." That is what my writing process has looked like in the past. 



I attended HEALTHeVoices earlier this year where I learned how to create a editing calendar, with prompts on what to write. I was so proud of that calendar. It was inspired. See, that's the overachiever in me. I was determined to make a calendar; however the perfectionist in me overlooked the fact that the content needed to be topics broad enough that I would actually want to write about them when the time arose. That calendar is now sitting on my bookshelf collecting dust, not even being utilized to live out it's purpose of reminding me it really is Monday. The procrastinator, well she just sits back and hopes this attempt to be organic while using a pre-designed prompt will work at superseding all these nuances of my process.

So in learning to just trust the organic process of being my 100% authentic self, I am reading the prompts and simply typing without stopping. I am doing four posts at one time (mostly to catch up because I didn't  actually start on Day 1) and then I edit and add photos and spacing later. I only read over it once, in the voice I use when I'm casually talking with friends and then I hit submit. The only thing that takes up more time than the procrastinator in me prefers, is adding in links. When I figure out how to do that as I type without getting distracted and looking for unicorns, I'll have it made!

KEEP CALM AND OH LOOK  A UNICORN!

I'm determined to do all 30 posts this month, even though I know I will be out of town in a week or so for more than five days. I plan (key idea: NOT procrastinate) to write those posts out before I leave. Setting realistic goals in this blogging thing will help me bite the bullet and finish editing the one book I've completed the rough draft on, and begin writing the other three that are crying for my attention. 

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I will succeed. My vision board says so and I believe it because I completed most of it before my perfectionist and procrastinator kicked in. The overachiever won that project hands down - best vision board I've ever done! 

Do you have  vision board? Do you have a crazy writing process? Are you a procrastinator, how do you make that work for you? Let me hear about it! I'm all about giving and sharing!

Thanks for reading so far, please comment and share! 

xoxo

www.kamaria.org | #embracehealing | #giveinspiration | #livevictorious | #empoweredlegacies