Public Health, Ebola, and TB

The vector of Ebola is poverty
— http://www.onthemedia.org/story/viral-narratives/

Professor Priscilla Wald spoke on a radio program this week called On the Media.  She said, "The vector of Ebola is poverty."  This same vector is involved in tuberculosis in many parts of the world.  Poverty is what keeps TB thriving in communities that lack strong public health systems.  Our TB Voices participants and those from our TB photovoice groups around the world all express the need to strengthen our public health systems and continue to educate our communities about TB.  If our public health systems are not healthy, then our communities are not healthy. 

Here is our view of public health in Snohomish County.  Our TB Voices Project participants all stressed the importance of compassionate public health workers in their recovery process.

Not one city in Snohomish County is contributing a dime towards ensuring our public health system is strong and ready to respond to health situations that impact us all.  Communicable diseases such as Tuberculosis and the emergence of new diseases like Ebola have our U.S. public health systems in the spotlight. 850 babies were recently exposed to TB in El Paso, Texas, and Ebola tragically continues to impact families in West Africa and across the globe. When we shine a light on our public health systems in Snohomish and King County, we see years of budget cuts and now upcoming reforms that thin out public health's core work. 80 full time staff positions since 2008 have been eliminated at the Snohomish Health District. As much as we are shocked by the lack of infrastructure for public health in developing countries due to crippling poverty, we need to strengthen our core public health programs here in Snohomish County. This is possible with your support, but you must speak out.  If we don't invest in public health at the community, state, and national level, the minimum will get done and vital programs that we take for granted will disappear.

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Hearing a Pin Drop

During June, the TB Voices Project exhibition traveled to Atlanta for the National TB Controller Association Annual Conference.  Five banners containing over 20 stories were displayed during the week and I had the opportunity to share about our project and the stories that were shared in the Northwest to the entire delegation.  The feedback was tremendous and the desire to have even more stories recorded was repeated over and over. 

Hearing a pin drop-------

During my presentation, I played an audio clip of Christine, one of the 28 TB Voices Project participants.  Christinewas stricken with TB in her hip when she 18 months. She spent 10 years in an English hospital—on her back, immobilized, for 5 of those years.  She has endured nearly 30 surgeries.

This is the clip the audience heard:

I came out when I was 11, and I had to have a private tutor in order to be educated because they only taught you to speak.  There was no schooling as such.  But I must have been intelligent because I did very well.  But the thing that I remember the most, there is nothing as cruel as children, and in England back then if you were disabled at all, you were classed as a freak.  It is not like it is today.  You were a freak.  They were very cruel.  The people were cruel.  They would call me hop-a-long and because my butt sticks out because it is straightened, it does not have any flexibility then, you know, you were called chicken.  They were terrible.  But my father, whom I adored, used to always say to me you are normal, you are not disabled at all, and you’re not interested in the possibilities of defeat because they don’t exist.  I will never forget that because he built me the character that I have today because they told me that I wouldn’t be able to ride a bike, drive a car, swim, dance, and I set out to do all of that, and I did it all, and so things, you know, everything was okay.

Christine's authentic voice as she brought to light the real stories behind the medical diagnosis and treatment of TB, fully engaged and moved the audience. We are so thankful that Christine chose to share her story. 

 

 

TB Voices Project Summer Tour

Summer is not exclusively about taking time off.  Well, some down time is beneficial to all! 

For TB Photovoice,  summer is about sharing and amplifying the stories participants in the TB Voices Project have so courageously brought forward.  Their personal TB experiences are here to learn from; to create empathy and understanding.  We want to change the mindset that has lingered for far too long in the U.S. and beyond; that of the worldly culture of stigma and misinformation.

We have been invited to travel to Atlanta June 10-13, for the National TB Controller Association Annual Conference.  I will have the opportunity to address the delegation and display our TB Voices Project traveling exhibition, consisting of 5-6' banners showcasing the stories and pictures of our participants.  I will also be a guest at a breakout session that will discuss the importance of documenting TB stories and how to encourage positive participation.  Our TB Voices Project video will be playing onsite throughout the conference.

Then, it is off to Washington, D.C.!  I will be conducting a workshop at the International RESULTS Conference for global and domestic poverty activists.  I will use the TB Voices Project to illustrate how to inspire and instill authentic trust so that people feel compelled to safely share their personal stories to bring about awareness and change to their communities.

You can join us by cheering us on through our Facebook page. Or,  keep us on the road sharing stories and stomping out the TB stigma by donating online at our GlobalGiving Donation site.

Come along with us any way you can, and help us support those impacted by TB!

Today is World TB Day

To all of those around the world who have been impacted  by TB throughout the generations, our hearts and thoughts are with you today as we remember the struggles you experienced. 

We believe the increasing use of stories by persons impacted by TB into TB elimination efforts  will help to provide communities around the world the tools they need to respond compassionately to this epidemic.  All communities must have know the facts about TB, and provide solid social and medical support to those impacted by TB.  

1 Day Until World TB Day

Ready to speak at Town Hall in Seattle tomorrow for our World TB Day event. https://www.facebook.com/events/1377164102554247/ 

Looking forward to being the messenger of some amazing TB stories.  With the news that TB cases in Washington state have increased, our job is to ensure that our response is based in knowledge and compassion.  We must educate our community about what TB is so that everyone understands the basics, that TB is preventable, treatable and curable.  Then we must provide support and compassion to those impacted. 

2 Days Until World TB Day

What a great day with the participants of the TB Voices Project!  Pictures are forth coming but, as one participant put it, it was a reunion of people with common experiences.  Some where children or teens when they were diagnosed TB.  Others were college students when their parents were diagnosed with TB.  Some were moms who had young children when they were sent to a TB sanatorium.  There stories were different but their connection with one another on this day was palpable.  KUOW 94.9 will be airing a segment about Alice, one of our participants, on Monday.  Once I hear it, I will send out the link!  Stay tuned!

3 Days Until World TB Day

Today is the day!  Time to honor TB Voices Project participants at the Snohomish Health District, 1:00-2:30pm, 3020 Rucker Avenue in Everett.  15 participants are bringing their friends and family to, in solidarity, reflect on how their TB experience relates to the larger, global TB epidemic.  Hope you can join us!

 

 

4 Days Until World TB Day

I have been thinking of the participants who will not be able to join us at our World TB Day event on Friday, March 21 at the Snohomish Health District in Everett.  One of them, Fatxi.  She is caring for her ill mother.  But you can see her quote floating across the Snohomish Health District atrium.

5 Days Until World TB Day

The momentum is definitely building!  Not sure I am going to sleep until after my presentation at the Washington State Department of Health, the day after World TB Day!  But that is ok!  I am so looking forward to our Appreciation Day on Friday for our participants at the Snohomish Health District and the Town Hall presentation on Monday. 

6 Days Until World TB Day

To honor our TB Voices participants, we have a wall that displays many of their hopeful faces.  They are the supporters of those who had TB; the survivors of those with TB; and all of them want people to know that TB is preventable, treatable, and curable.

7 Days Until World TB Day

A little fine tuning is all our exhibition needs, but already people are very intrigued by the quotes of our participants floating over their heads at the Snohomish Health District! 

When you stand in the lobby of the Snohomish Health District, this is what you will see!

When you stand in the lobby of the Snohomish Health District, this is what you will see!

8 Days Until World TB Day

I am also counting down until our World TB Day appreciation ceremony for our TB Voices participants!  The community is welcome to attend this free event this Friday at 1:00pm-2:30pm at the Snohomish Health District in Everett (3020 Rucker Avenue.)  Over 15 participants have stated they are coming to the event, and many have called to say how much they are looking forward to being with others who have shared their TB stories.  Yesterday afternoon, we installed a major piece of our exhibition.  Only pictures will do it justice so checkout our Facebook post today!  More pictures coming!

 

 

9 Days Until World TB Day

Talking about one's TB experience is just not as common as talking about the cold you had over the winter.  TB is not an easy topic to discuss.   TB education and advocacy programs across the country have been challenged for decades to include persons impacted by TB into their efforts.  It seems the dream is that people would naturally want to just hop on the stage and tell their story.  For the most part, not many people want to be known as "that person who had TB."  Yet, we can learn some valuable lessons from how cancer awareness and advocacy campaigns have evolved in the US.  Once highly stigmatized, now persons with cancer are supported because people who had cancer educated the masses on how their survival depends on strong social support and the elimination of the cancer stigma.  These campaigns have also taught us that a person is a person first---- who happens to have cancer.    Our TB Voices participants demonstrated that TB was a chapter in their lives and they want others to know that.  They especially want this message to reach people who are newly diagnosed with TB.  The want them to know there is light at the end of the tunnel.  What seemed to help our participants bring their stories forward was

1  Trust in how their story was to be used and

2 how their story could help others dealing with TB today. 

Gratitude to our participants for sharing their TB stories!

10 Days Until World TB Day

I am just off the phone with a wonderful woman from Snohomish County who read the article about our TB Voices participant Jeannette in the Stanwood Camano News paper http://www.scnews.com/news/image_d9d7b38c-a95c-11e3-aca6-001a4bcf6878.html.  She wanted to share how she was a teenager in the 60s when her mother was in a TB sanatorium She quickly had to learn to cook for her younger siblings and father, and the impact on the entire family was significant.  There are so many TB stories out there and we have a feeling this project may linger or be replicated in some way in more communities across the U.S.  Stay tuned!

11 Days Until World TB Day

Well rested and ready to field calls from the media, work on my presentation for Seattle's Town Hall and Washington State TB program. What we have accomplished is finally being sent out to the community, and for this I am so grateful.  We wanted to raise awareness about TB and to honor the stories of persons impacted by TB.  It is happening!  We are also going to educate our elected officials about supporting national TB efforts.  In the final 2014 omnibus spending bill, funding for domestic TB control was cut back to fiscal 2005 year levels. This funding cut is leaving communities vulnerable to outbreaks of drug resistant TB, which is very expensive and complicated to treat. The TB Voices Project has the potential to truly work at multiple levels to help eliminate TB.  The more we share our stories with the community and to those who hold the purse strings, the more educated we will be to respond and manage this disease.

12 Days Until World TB Day

There has been so much activity on all levels of the TB Voices Project these days, that frankly, I am tired!  But I am so proud of the entire project and I know that our hard work is going to translate into support and inspiration to those who are newly diagnosed with TB.  Also, when the future TB cases occur in our community, we hope that the media and the community responds with support and compassion, not blaming and fear.  If you haven't watched our TB Voices video featured on the homepage of our website, I highly recommend it! 

13 Days Until World TB Day

Find ways to deal with the solution that you are faced with now.  Because you can beat it.  You can get over it, and then you can go on with your life.  Face it.  Don’t be afraid of it, don’t hide from it.  Many people don’t want to find out what is wrong with them.  I’m not one of those people.  Jeannette

Jeannette, from Snohomish County, is our featured TB story this week.  I love this particular quote from her because she has such a strong resolve and gives this gift to others by her encouragement.  People who have been newly diagnosed with TB are feeling overwhelmed. To hear from a former TB patient that, "you can beat it.  You can get over it, and then you can go on with your life,"  is uplifting and  inspires hope.  As a recent cancer survivor, Jeannette applied this frame of mind during her treatment.  She is now healthy and credits her positive attitude for keeping things in perspective.

14 Days Until World TB Day

This is the week of major work on our TB Voices exhibition.  Behind the scenes materials are being built, photographs are being enlarged, and last minute ideas are floating all around!  We can't wait for our participants and the public to see the exhibition.  We hope it reflects their stories well and educates our community about the realities of TB of yesterday and today.  The exhibit will be up from March 17-28th at the Snohomish Health District, 3020 Rucker Avenue in Everett. 

Join us on Friday, March 21st from 1:00pm-2:30pm at the Snohomish Health District as we commemorate World TB Day and honor our TB Voices participants.  If you can't be there, we will post lots of pictures!

 

15 Days Until World TB Day

We are springing ahead just like day light savings time!  We have been on a media frenzy these last couple of weeks getting the word out about TB Voices Project with press releases, radio commentaries, persistently following up with busy reporters, and just plain ol' word of mouth! 

What I absolutely love is how we are collaborating with the local health departments to explore the best way to share these stories with people who have recently been diagnosed with TB.   Great ideas are being generated and we intend to provide these stories as a way to inspire and give others hope.  Our TB Voices participant who is an immigrant from Africa had many pieces of wise advice to share, such as:

"Take your medication every day.  If you don’t,  it could become resistant.  So take your medication every day.  Eat a nice meal for breakfast before you take the medication.  Have someone else there.  The day that you don’t feel like taking that medication, that person will make sure they remind you that the TB could become resistant so you have to take it."

16 Days Until World TB Day

Still counting down to World TB Day over the weekend! 

I have often been overcome by the honor and privilege to listen to the stories of our participants who boldly came forward to tell of their TB experience.  I am also aware of the great responsibility I have to ensure that their stories are provided to you with authenticity and integrity.   This all begins with trust. 

I remember sitting down with Fatxi for our interviews, after multiple emails,  and face to face conversations.  Her story spilled out of her like a rushing stream, filled with such urgency and pure sincerity for humanity.  I was in tears as we went through the interview together, touched by her deep rooted desire for others to  "treat people as they would like to be treated."

Yet, at one point in the interview, Fatxi said,

"I’m really so glad that I had this interview and I’m so glad that I had this opportunity to speak up. This is always in my mind, but I wasn’t quite sure where to start or where to go, but now I've had opportunity to  speak up and say what is in my mind. I’m so relieved.  I am really so relieved and I am so glad.  I thank you for that;  letting me do this. It is my honor."

It is my honor too.