2012/05/07

Why education?

Jessica presenting 50 Women at International Institute of Education

In April I presented some of the stories in “50 Women” to a group of education professionals at the Institute of International Education in San Francisco.

I was moved by their interest and attentiveness in the experiences of Nadia, Tzvia, Azalina, Mona, Bineta, Neema, Lena and Carmen. Their stories all serve to represent a collection of timely world issues and serious questions humanity simply must answer.

A question one women asked me will dance forever in my memory of this day: “What made you decide to write this book and pursue this project”?

I paused, waiting for the words of a complicated, elaborate response to flood my mind. Instead I replied: “I just wanted to educate people”.

Jessica presenting at the Institute of International Education SF

It was a simple answer yet explained everything I have stood for with this project over the past three years. Simple, yes, but a motivation and conviction nudging me on in periods of complication or uncertainty.

Trust me, writing a book is not easy when the lives of 50 other people are involved. I have invested nearly all of my free time into transcribing pages and pages of interview footage, converting these pages into stories and communicating with the women involved to ensure accuracy of facts. At times it felt like a never-ending process, forcing me to ask serious questions about myself time and time again. Urging me to improve the person that I am and to respect and honor the better woman I strive to gradually become.

I have touched on many very personal issues with many of these women and now feel that they are all a part of me. I have explored several wars, instances of sexual abuse and physical violence, political issues concerning immigration and so much more. The broad range of timely and important topics covered in the stories of “50 Women” astonishes me to the core and I am the one who compiled them. These women are those I treasure the most in this world. The ones I give my respect to. They are my soul and my own strength now. Completing this book has made me the woman that I am.

As my 100 page book proposal goes out to literary agents and publishers for the first time this week, I stand confidently in its messages and the wealth of information and lessons it offers to readers. I created this book to educate people no doubt. But also to document the stories of under represented women and to capture pieces of history in the instances of some stories as they highlight many current events and timely global topics. I also wanted to capture the true meaning of a heroine- the true strength women possess.

I suppose I learned something about myself: that I am an educator. That my focus in life is about educating people. I am not an opportunist in my interactions. When I talk to someone, my goal is always to leave them asking questions and to teach them something. I’ve always believed that education is empowerment in the greatest sense. As I interviewed Bineta Diop at the United Nations this year about her struggle to obtain a college degree after being labor trafficked, she told me: “The most powerful thing another human being can give to me is education. With knowledge I have the power to change my situation”.
Girls attending school in Afghanistan have had acid thrown at them. Girls in Rwanda often miss school just because of their menstrual period. Child brides in the middle east never complete school past the third grade. Young women in Southeast Asia and Eastern Europe never attend school because they are sex trafficked. The patterns of limited opportunities only continue to grow and I saw evidence of this at the United Nations this year.

I am not concerned with my own personal gain in this situation. What I am concerned with is that these stories are read and that inspiration is taken from them. That knowledge and a greater sense of awareness is achieved through them. I want this book to reach every corner of the world, no matter how it will do that and in what form it takes. I want it to educate and deeply touch every person who reads it. I want desperate women everywhere to be able to read these stories or for illiterate women, to hear them on tape.

Women are underrepresented too many times. We are absent from the negotiating tables, we are sold and transferred as property, and we are viewed as second-rate beings.
Not this time. Not on my watch.

View my shared presentation from the Institute of International Education on Prezi

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2012/04/20

Somalia in cartoons

What is so enchanting about the editorial cartoon?

It is one of the oldest mediums for communicating densely complicated political situations and societal ills in hyperbolic and often ironic ways. As early as the 1700’s editorial cartoons have graced the pages of publications in the United States taking critical stabs at political figures and government policies.

Somali cartoonist Abdul Muhiadin discusses his work in Norway

Somali cartoonist Abdul Muhiadin discusses his work in Norway

Through the organization Afrikanation, an NGO currently operating in Hargeysa (Somaliland) Somalia, I was introduced to the work of Abdul Muhiadin and was immediately drawn to his original and powerful images. In 2011, Executive Director Ebony Iman delivered 500 pounds of art supplies to Somali artists in Hargeysa through Afrikanation. Her artists have created phenomenal and compelling paintings and drawings which often reveal the tumultuous history of the country.

Torn Somalia cartoon

Torn Somalia
View Abdul's complete portfolio:http://abdularts.blogspot.com/

Women’s rights is a key issue in Somalia and particularly in the lower part of the country where Mogadishu has fallen into the control of rebel groups. Female Genital mutilation (FGM)  is a widely practiced custom and women’s rights are the ultimate forfeiture at the hands of strict Sharia law imposed by extremist groups like Al-Shabaab.

After discovering his work and building a friendship with Abdul, I have grown to not only appreciate his cartoons and their important messages but also the kind, gentle, caring and highly educated man he is. I am proud to be featuring his women’s rights related editorial cartoons in “50 Women” and to introduce him to the rest of the world. Abdul reminds us that we cannot overlook Somalia and especially Somali women. His art simply must be seen and understood.

Cartoon of female genital mutilation

A cartoon revealing the horrors of Female Genital Mutilation.
View Abdul's full portfolio at: http://abdularts.blogspot.com/

I managed to catch up with him and ask him a few questions:

 When did you begin drawing editorial cartoons?

As a little boy growing up a war-torn country I started making drawings to understand the complicated situations. After posting some graphics on the walls of Mogadishu with peace messages I was invited to publish my work in local newspapers. I continued my cartoons and was threatened by the warlords and radical groups who are the ruling majority of my country. Sadly I could not remain in Somalia. I ended up in exile in Egypt because of their contents and criticism of rebel groups. After 6 years I became a guest cartoonist in the wonderful country of Norway. My good fortune encouraged me to continue my work without fear and more importantly, without silence.

Cartoon by Abdul depicting the pressure of Al- Shabaab
To view his complete portfolio visit: http://abdularts.blogspot.com/

Why did you choose this kind of art?

I prefer cartooning because I feel that each cartoon is more than just art. They depict important messages to people about the situation in my country. Cartoons are important in a country like Somalia because there is a high rate of illiteracy. This way people who cannot read can enjoy the humor and messages the cartoons reveal.

What is your hope for Somalia?
I wish Somalia to have peace and freedom since my people have suffered for decades. I will never give up  defending our human rights. I will defend them with my pen each time I draw.

cartoon of father and son in a graveyard in Somalia

Child (missing hand): Dad, where is the graveyard of my brother?
Dad (missing leg) : It is right there next to your mother and behind your sisters grave.
View Abdul's complete portfolio at: http://abdularts.blogspot.com/

To view his full portfolio click here.

To view other work by artists in Hargeysa, Somalia, visit Afrikanation

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2012/03/08

Debriefing: United Nations 56th session of CSW

Jessica Buchleitner in the UN general assembly room

Myself at the United Nations general assembly

After attending the first week of the United Nations 56th annual session of the Commission on the Status of Women at United Nations headquarters in NY, NY  I walk away from the experience humbled and driven with a more comprehensive understanding of key problems facing women globally.

Unfortunately much of what I witnessed, the stories I was told and the pictures I saw do not point to a more progressive world for women. In fact, it made me feel that global women’s rights and empowerment appear to be in some cases stagnant and in others even regressive.

Bineta Diop and myself on WNN panel discussion at UNCSW56

My intention is not to be a pessimist and in the realm of women’s rights journalism, advocacy and activism alike, it is our duty to be optimistic no matter how many stories we digest of abuses. Why be in the fight if you are not in it to win it? From our perspective the average person would see the world as a choking, bleeding entity but not to women like myself and the others at UNCSW56. We see hope in the challenges facing ourselves and our global sisters. We see the problems, but we are actively engaged to uncover solutions.

I sat through panel after panel of presentations and forums from progressive women’s groups who came to NYC from all corners of the world to share this information at the United Nations. All were part of NGO organizations working exclusively to combat the injustices of gender inequality. I met women from Iran, Sudan, Uganda, Taiwan, Afghanistan, Norway and so many other countries. I conversed with them one on one about their programs and goals and was moved to know that people like them, kindred souls, existed.

I apply the term “regressive” in reference to women’s rights and gender equality worldwide because in recent history we, as humanity, have taken so many steps backwards. Countries where women once prided themselves in an existence of equality now degrade and shame them solely on the basis of gender.

I sat through a presentation on Female Genital Mutilation at UNCSW56 where I was informed an estimated 92 million girls in Africa under the age of ten underwent the procedure.  I attended because “50 Women” features the story of a young African woman named Bita who underwent the reluctant procedure as a young child. I was also informed that the practice of FGM has not declined, only increased in the region of Sub Saharan Africa where Bita (Senegal) is from.

Afghanistan is an example of a country where women had more equal rights only to watch them dissipate over the past several decades. Prior to the Soviet occupation and the subsequent years of war, women had significant rights and educational and professional opportunities, especially in Afghanistan’s larger cities. The 1996 takeover by the Taliban pushed Afghan women’s rights back decades and arguably even centuries, effectively banning women and girls from all forms of public life. Even after the 2001 overthrow of the Taliban and the implementation of a new United Nations-appointed government in Afghanistan, the situation of women’s rights is one of much strife and debate. The return to a place of equal rights in post-Taliban Afghanistan has been a slow and often arduous process.

In 1977, women composed 15 percent of loya jirga members in the Afghan government. Today, they compose nine percent. Before the Taliban came to power ten years ago, Afghan women composed 50 percent of government workers, 70 percent of schoolteachers and 40 percent of doctors in Kabul and this is unfortunately no more the case.

There is an inherent difference in countries where women have virtually never had rights and countries where they had them and then lost them. I saw far too much evidence of this at UNCSW56 and was not expecting to witness such declinations as what I anticipated to witness was progress.

Fortunately the presence of women like Leymah Gbowee, Nobel Prize winner and freedom Fighter during the Liberian civil war, breathed hope into the experience.

In her discussion in the above video, she highlights the importance of the church and other religious entities in the realm of human rights and brings a stark yet candid observation in the role of religion and the advancement of humankind, namely women. Her criticism is accurate in that not only are religious entities serving as oppressors to women in many ways, they also tend to be self-serving entities instead of serving the communities and people they claim to serve.

“Most of the vices out there exist in the church” she spoke at UNCSW 56, “how can the church speak out against politics of the world when Bishops are changing constitutions to be Bishops for life”.

She continued to state: “Its important for the church to go back to being the social justice church it was meant to be”.

I attended UNCSW56 with my Muslim African sister, Bineta Diop. As we exited the premises we were accosted by christian fundamentalists. The women showed us a book of photos of poor children in Bangladesh and went on to tell us that they entered the impoverished country to “tell the poor about Jesus and feed them”.  We actively listened to their case until they challenged my Muslim sister and her belief in Islam. We told them we were no longer interested in the conversation and left.

After that experience, Bineta and I attended a panel discussion and forum on Islam and women’s rights which particularly examined and dissected the role of fundamentalist Islam in the oppression of women.  Leymah’s words became very apparent:

First, charity should never be the guise for promoting religious ideals. If one desires to help the poor, they must do it in the absence of religious propaganda, otherwise they are taking advantage of the desperate and hungry.

Second, Leymah speaks the truth about contemporary religious entities- many appear to serve themselves. When I interviewed boona Cheema (India), an ordained minister she spoke extensively about the absence of the church in the realm of social justice. She emphasized, after the Unitarian Church refused to accept her ministry to the poor and homeless, that the church has drifted away from the original community values it once promoted and has become very self serving. I am not saying this is the case for all religious entities. I have witnessed truly selfless, humanitarian acts by very religious individuals. Through history it is an undeniable fact that the church has unfortunately exploited and served corrupt interests time and time again.

Religious Fundamentalism  was one phenomenon I observed at UNCSW56 in need of radical reformation. In many ways, under the curtain of fundamental beliefs, we are only serving to oppress instead of aid. Such is the case with women in Afghanistan, with Female Genital Mutilation and with religiously motivated pro-life campaigns which threaten to stifle our reproductive rights.

Bineta Diop and myself on a panel discussion at UNCSW56

Bineta Diop and I participated in a panel discussion facilitated by Women News Network on the usage of technology for the advancement of rural women. Our room heated up as women from all over the world were present in our audience. We actively engaged them to uncover common barriers to technology in their countries: Iran, Uganda, Ghana, Afghanistan etc.. and discussed applicable solutions to these barriers. Bineta discussed government imposed taxes on mobile phone usage in Senegal and generated audience feedback:

Additional panels included “50 Women” contributor Mona Motwani. A civil rights attorney and non profit co founder, Mona ventured to the United Nations after spending the last 5 years of her life disabled by Lyme disease. After successful completion of her treatment, she rose to the occasion to speak at UNCSW56:

I would love to have returned from the United Nations filled with idealism, but this is not the case. In fact, what I ingested was a solid spoonful of harsh reality. It honestly is disappointing to me in many ways, yet I see the hope in the eyes of all of the women I met despite their troubled circumstances.

Why disappointing? As humanity we can do more. We are better than what we have become. Although we are capable of alot of darkness, we are also capable of a lot of light. Just as equally as we are capable of hatred, we are capable of compassion.  There is a strong need to forgo the self absorption and the obsession with petty day to day occurrences and realize that we are all part of much greater problems of a serious and deadly nature. We are not progressing our world, in many ways we are stifling it. Facing reality in this circumstance is not easy and I hate to be the woman with the more “negative” angle but it is practical and truthful.

Our elders believed the world would advance. In many ways it has, but in many others is has not. Such self serving interests and digressions will ultimately cost us in the long run.

If I walk away from UNCSW56 with one message to the world it is this: Begin in the grassroots of your communities and open your eyes the key problems plaguing your own community. Ask yourself what change you can influence. Right now, the strongest change agents concerning women are stirring underground in the grassroots. They are not our politicians, our churches, or our financial institutions- they are groups of ordinary citizens with a will and objectives.

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2012/02/23

Off to the United Nations

I am off to New York City for the 56th Session of the United Nations Commission on the Status of Women tonight. I am excited and anxious for this experience to unfold. My journey with “50 Women” has lead to many unanticipated and fascinating paths and going to the United Nations as a delegate is certainly a profound honor.

For those curious about what this process means and what the commission does, I am here to explain the specifics and give a very brief overview of the United Nations:

The founding of the United Nations in 1945 was facilitated by the fascinating and vibrant Eleanor Roosevelt, a woman who certainly made her mark in American history and who coined the very motto I live by: “Do something everyday that scares you”.

The United Nations was originally founded to facilitate cooperation between member states in international law, security, economic development, social progress, human rights and world peace. There are currently 193 member states and its primary judicial organ is the International Court of Justice in The Hague, Netherlands.

What I will be attending is the 56th annual session of the United Nations Commission on the Status of Women. CSW is a commission of the United Nations Economic and Social Council (ECOSOC). It is the principal global policy making body dedicated exclusively to gender equality and advancement of women. Each year the CSW hosts an annual session generally lasting 10 working days that brings together representatives and NGO appointed delegates aimed to evaluate progress on gender equality, identify challenges, set global standards and formulate concrete policies to promote gender equality and women’s global empowerment. Each annual session has its own theme and this year it is the empowerment of rural women and their role in poverty and hunger eradication and human development.

As an NGO appointed delegate I will have a number of tasks, but one of the main will be participating in a panel with WNN entitled: Technology for Social Good of Indigenous Women & Women in the Global South where we will discuss the importance of social media and its role in women’s rights and empowerment.

I will be live tweeting as I attend panels and meetings under the account @50womenproject. (To view a list of all session activity, refer to #CSW56)

Since the conception of “50 Women” in 2009 I have fought for the rights of global women including assisting on certain political asylum cases. I have a direct concern for the rights and opportunities afforded to women in this world and believe it is our human rights that will serve to advance societies and cultures. This session is a groundbreaking event for myself and “50 Women”.

Two of the women who are part of “50 Women” will proudly attend with me: Samatata Foundation founder Bineta Diop and Civil Rights attorney and Spark co founder Mona Motwani. Several other San Francisco government representatives are also attending in addition to a group from San Francisco State University who will sponsor additional panels on women’s rights and advancement.

As a member of the San Francisco crowd, we are also making a push for the United Nations to host its 5th World Conference in San Francisco in 2015. We are prepared to boldly make our cases.

This is a necessary step in my journey with “50 Women”. I am proud to represent everything I have stood for at the United Nations. I am humbled by this opportunity and cannot wait to see the other doors this experience will open in my life and the connections I will make in New York.

Viva la revolution!

 

For more information on the United Nations Commission on the Status of Women: http://www.un.org/womenwatch/daw/csw/56sess.htm

 

 

 

 

 

 

 

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2012/02/21

Above and Beyond

Dr. Ilmana Fasih (right)

On the “about” section of Dr. Ilmana Fasih’s blog it reads:

If  Blind to Bounds  was to represent  Ilmana Fasih

Then, KABIR is  her soul

MY POETRY  her mind

ART  her heart

MUSIC  her senses

INDIA/PAKISTAN/POLITICS/ SOCIAL ISSUES   her gut

“Dreams of a world with NO borders and NO wars.

Of a PEACEFUL WORLD…. far from the maddening crowd.”

Nearly every facet of Dr. Ilmana Fasih is a representation of a more progressive world. Not only did the Indian born gynecologist break political and cultural barriers when she married a Pakistani but she also intends to return to the “land of her children” and open a health clinic in the near future.

Ilmana and I stumbled upon each other via social media where I discovered one of her blog posts written about India/ Pakistan relations and how Ilmana hopes her own marriage will symbolize peace between both nations. Yet her ambitions do not end there and her story certainly did not begin there as she is a woman of tremendous accomplishments and heart.

Ilmana spent nearly two decades working in gynaecology in the Middle East with a Bedouin Muslim community where she assisted in developing hospital procedures for handling domestic violence and counseling women in plural marriages about important reproductive health choices.

Several years ago she expanded her community health practices to an emerging field known as mHealth, the practice of medicine and public health through the use and support of mobile devices. Through her family social enterprise venture ZMQ Software Systems, Ilmana assists in disseminating information on various health and social issues through the use of mobile games. They have constructed and distributed mobile games concerning HIV/AIDS awareness, Tuberculosis, Maternal health and sexual abuse.

Their Tuberculosis and HIV games gained nearly 5,000 downloads in India and Africa and were eventually translated into Swahili after being taken to Kenya, Tanzania and other countries. The company boasted 2.7 million downloads in 3 years within multiple African countries of the games.

While her stories of assisting women in plural marriages caught in domestic violence issues and building health awareness mobile games are necessary examples of progressive medicine, I believe her Tabeer project is truly where we realized our kinship.

After five years, thousands of dollars and refusal after refusal to pay baksheesh (bribes/gifts), Ilmana’s visionary work under the Tabeer project continues regarding the development of a health clinic in Pakistan and another mhealth initiative she refers to as “Unveiling the Veil of Ignorance” where she wishes to introduce, through the use of mobile games, issues such as contraceptive usage and domestic abuse.

“In Muslim Pakistani society it’s difficult for a woman to come out of the household and especially to have dialogue about reproductive issues. If one plans on holding classes and asking the women to attend them there would be a lot of opposition from their family members.  But, luckily, most of these women or their daughters have a mobile phone. So to reach them through mobile phone, while not making them cross the four walls of their homes would be the easiest way to empower them with the right information—be it on maternal issues, birth control, abuse or even micro financing” she explained to me over a skype interview.

 Tabeer means “realizing one’s dreams” in Urdu and this project has become as important as the breath in Ilmana’s body. Here is an excerpt from her “50 Women” story about this ambitious and admirable endeavor as I simply cannot say it in my own words:

My husband and I had promised ourselves that once the children are well on track to fend for their lives, we shall return back home to give back to our society. Probably now that the kids are attending the University that time has arrived. How long can we run away from the realities of this world especially of the realities back home? How long should one suppress one’s conscience when there is a great need to serve the needy there.

Since Pakistan is home for my husband and children, it is home for me too.

Although Pakistan has multitudes of problems like poverty, ill health, corruption, illiteracy and extremism, it is also blessed with hundreds of thousands of passionate empathetic men and women who are working day and night in the civil society to improve the lives of suffering Pakistanis. Our return adds just a drop in the ocean, but it would be a huge sense of satisfaction to me and my husband. Aside from all odds, there is  a great scope of good work there.

Whatever we earned in the Middle East, we have invested in building the clinic back home.

Apart from good quality, ethical medical practice, we plan to carry on with the community level health activism and health promotion too.

The work has gone on for almost five years now—including the initial file work which took four years. Had we taken the easier course of working our way through with bribes, the paper work would not have taken more than six months. But my husband was adamant that he would not give ‘a penny’ as a bribe. Not that we didn’t have enough to afford bribes, but it was more of a principled stance that he would not let a single penny of his hard-earned money go to waste in bribes or corruption.

Here I would like to mention that while struggling for getting our files approved, my husband called the Mayor of the city, without knowing him and complained: “I have come to work here, but  it is made impossible because of  the bribe demands to be met at each step.”

Just over the phone, that mayor promised to ensure that no one would bother us.  A few days later when my husband walked into the office, the Director of the concerned organization was fuming that he had been scolded by the Mayor and told that no one should ask for any illegal money. And hence began our paper work.

However unfortunately the Mayor’s tenure was over, and the officer was changed too. The whole new set up arrived, as always in Pakistan, and there needed to be a new scheme of negotiations.

Despite a lot of discouraging voices repeating the expression “live in Rome as Romans do”  my husband stayed steadfast. Our files got stuck at each officer’s table for months in the expectation of bribes. Numerous objections were put on the files, which we were told were to deliberately done to ‘negotiate’ a deal. But we did not lose patience. In fact, it was the officers who ultimately lost and signed.

My husband had to face ridicule after ridicule challenging him to pay bribes. They would taunt: “Are you such a beggar that you are begging us for a signature without giving us anything”.

He would plainly reply, “Yes, I cannot afford to pay the bribe”.

You have to be shameless at times because they will challenge your ego.

It took a lot of bold walk-ins into the offices of senior officers to ask for help in order to get the work done ‘without bribes’.  It is now with great pleasure that I say that even those officers, who were known to be corrupt, complied with our honest pleas.

The top officer who was to give the final approval remarked: “If you have the right intentions and goodwill to work, I also will honor it. I wish you good luck.” He then signed without a penny of extra money being spent as a bribe.

I would like to take this opportunity to reiterate that despite all the issues of corruption in Pakistan, one lesson I have learned from this experience is that if one has the will and the patience to walk the right path, you will ultimately triumph. Even the most corrupt of the officers are not devils. If you have the zest to convince him that you will not give in easily, the honest self  in him  will surface and he will comply with compassion.

Most of the time bribes or other forms of corruptions flourish when both sides try to take short cuts and have an undue advantage.

Throughout these five years, there were moments where one of us felt defeated, a feeling owed to the hurdles that came our way. But thankfully, my husband and I kept switching the role of a supporting spouse in those moments of despair.  At the moment we have reached a point where we cannot go back. We have invested all our life savings-whatever we had. Now the only direction is forward. Come what may, whether it is an unstable political situation or social insecurity, we have to make it work.

I hope we carry on with the same spirit in the future too- confident and upright in the face of corruption and standing on our own two feet with strength and moral courage. The journey of realizing this dream is arduous, we know…

I understand such a level of commitment to a humanitarian project. From the onset of “50 Women” I never accepted any outside funding for the book project instead opted to personally invest into its development. My reason for this was simple: I wanted creative control over its execution, room to experiment with new ideas and I wanted to work outside of the confines of publisher deadlines. This process has been one of healing for me as well in a very private sense and if I brought in outside funding I would not have been able to fully experience this. Someone else would have decided who I interviewed, what the logo looked like, what outline the book should follow, what topics it should cover in addition to what the budding foundation will do. I simply could not live with this. I had to allow it enough room to construct itself.
When I finish “50 Women” in its final form, all the stories of war, sexual abuse, illegal border crossing, labor trafficking and so many more crucial topics will be present in the unique ways they are meant to be and as they have grown over the last 2.5 years together. I could not see it any other way.

This is, however, the harder route to take. You are the last to be compensated. You are the only source of financing on the project so your financial resources are not only for you but for your brain child as well. You do it because you believe it is the reason you continue to exist. It is your heart; it is your soul. It is the first thing you think about when you wake up in the morning and the last thing you think of when you lay down to sleep at night. You live it, you breathe it, and no matter what hardship you encounter, you don’t ever stop believing in it. Why? You can see what it will be in its final form and that is enough conviction in and of itself to keep you going. In the last 2.5 years I have completely changed careers and am now in the midst of finding my way around a new profession. But all of the turbulent changes in life do not matter in the sense of “50 Women”. In fact, nothing else matters because it has to be completed and that is what I know. I have worked on it everyday for the last few years in every free moment I have had. I think any entrepreneur, writer, author or visionary can understand the strength of Ilmana and I’s convictions in this regard.

I remember my interview with Siobhan Neilland of OneMama, a non-profit serving a maternity clinic and economic development in Uganda. Siobhan was raised in a cult environment in the southern California desert, survived a broken and abusive childhood, addictions and a miscarriage which lead her to conceive OneMama. I’ll never forget when she told me she poured everything she had into OneMama from the beginning: her savings money, her energy and every resource she could uncover. To this day she works for OneMama and Shaboom Products free of charge because she wants all monetary resources to support the Ugandan maternity clinic. I mentioned in my post about her that it is not always easy to help people. Starting a charity often requires your own financial resources in the beginning and extensive work after its establishment. Unless, of course, you are well off enough to have the funds on stand-by, but not all of us do-gooders are endowed in this way. Humanitarian work is a 24/7, demanding and relentless choice of a lifestyle. Nonetheless, those of us who choose to take it on do it because we believe it is the reason we continue to breathe.

It seems to me these convictions to change the world are no stranger to women. The caring, nurturing warrior in all of us begs to be put to positive use. I have before envied people who are oblivious to the plight of others in the world. I have envied the simplicity of their lives and the absence of such unyielding and apparent passion that moves people like Ilmana, Siobhan and myself- the kind of passion that leads us to stretch beyond our means in order to produce our visions. These kinds of passions are the seed of human ingenuity. I feel nothing but fortunate that my life is so vibrant because of “50 Women”. I have given a lot just as Ilmana has, just as Siobhan has, but I can say that all of my efforts were completely worth it. I can’t imagine my life without it.

Currently the construction of the Tabeer clinic is still in progress and will continue development for 5-6 months before becoming operational.

I am looking forward to the day where I will receive the opportunity to visit Ilmana’s clinic in Pakistan and see up close everything her steadfast courage has produced…

Stay in touch with Ilmana’s efforts, writings, art and poetry by following her blog Blind to Bounds.

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2012/02/01

Better yet drowning in debt

Last IV treatment with a visit from Mona's friend Yael, who threw a fundraiser to help pay for some of Mona's medical bills in May 2011

After six years of wrestling with one of the most controversial and debilitating illnesses in modern history, Mona Motwani has successfully beat Lyme disease. She walks away from the crippling experience not only as a more enduring woman, but also gulping for air as she drowns in a pool of medical debt.

Mona is not alone as this is normalcy as far as patients in the United States with Lyme disease are concerned. An alleged 87 percent of them have exponential medical debt, according to Lyme Project and ILADS (International Lyme and Associated Disease Society).

Mona was interviewed for “50 Women” in April 2011 where her devastating struggle with Lyme will be recounted in a first person story. Lyme disease is one of the most commonly misdiagnosed diseases in the United States as the IDSA ( Infectious Disease Society of America)  refuses to recognize that it has the potential to progress into late stage. The definition and treatment standards of Lyme, which all major insurance companies follow, claim it can be treated in 28 days. For late stage Lyme patients, this is not adequate treatment. Unfortunately for them, most medical facilities are not even equipped to test for it and most physicians, despite the objective and measurable presence of spirochete bacteria Borrelia Burgdorferi, refuse to admit that it exists. Patients are misdiagnosed and often forced to shoulder the burden of their own medical expenses since most effective Lyme treatments are holistic in nature and not covered by insurance carriers.

“The IDSA or Infectious Disease Society of America claims CLD (chronic lyme disease) doesn’t exist. This allows the western health care system to deny diagnosis and treatment. It allows insurance companies to refuse to pay for treatment and to go after providers who treat CLD and ruin them by threatening their medical licenses and livelihood. Insurance companies have sued some doctors for over prescribing antibiotics and won!” explained Mara Williams, RN, MSN, ANP-BC and author of the bestselling book “Natures Dirty Needle” in a previous interview for 50womenblog.org.

“When someone with CLD is forced to deal with this part of the system, they are told it is all in their head and offered antidepressants. The way most providers practice allows them 5-10 minutes with a patient per visit. Someone with CLD requires much more intensive time and intervention. Most providers don’t want complex patients so frequently a patient will be given a basic Antibody test for Lyme which is not reliable and usually is negative even when someone has Lyme.  If patients were correctly assessed initially they would be less sick and easier to treat and cure. If ER docs had better knowledge of Lyme they could treat more acute cases, prevent CLD and the years of suffering and years of money spent on care that wouldn’t be needed”.

Late stage Lyme disease or CLD is defined as an infectious bacterial tick borne disease that is transmitted through the bite of a tick. Perhaps this sounds easily reversible, but when the tick bite is missed and a person goes months or even years without knowing that they have been infected, the disease enters its late disseminated stages, infecting many if not all systems of the body: limbic, neurological, physical, psychiatric, cardiac and more. At this point, it is enigmatic, painful, and expensive to treat.

Individuals harboring Lyme disease for extended time periods become incredibly ill and at this stage will often require years of treatment. By the time a Lyme patient reaches late stage- the disease is embedded in their tissue and strongly affects their central nervous system and brain.

Mona discusses its debilitating effects in her previous article.

Mona was insured with Blue Shield of California and was a successful Civil Rights attorney prior to having to leave her job after the disease disabled her several years ago. She is now 34 years old and her medical debt from treating Lyme disease is hundreds of thousands of dollars.
Time after time, Blue Shield of California denied coverage to Mona simply because they rely on the IDSA 28 day treatment standard of Lyme disease.

Using credit cards, her family’s retirement funds and other methods of payment, Mona’s medical debt totals over $200,000 dollars from the last five years of treating Lyme and bouncing from physician to physician to get an accurate diagnosis for it.

Read Mona’s frustration with Blue Shield of California in her own words.

Even with health insurance, Mona could not always get coverage for the treatment drugs and was forced to pay for them out of pocket, one of them amounting to $1,300 dollars a month. For a patient taking up to 70 pills a day, this can be financially devastating.
Eventually she was placed on IV antibiotic medications and had a picc line inserted into her arm to intravenously infuse antibiotics into her body daily in order to kill off budding borrelia burgdoferi bacteria.  Blue Shield of California refused to cover most of these treatments.

“Back in June 2010, after I had spent months trying to appeal the denial of my IV meds for Lyme, and got nowhere fast with the Appeals Unit at Blue Shield of California (red tape consistently), I sent out emails like clockwork trying to find someone in the media who would cover my story in the hopes of convincing Blue Shield of California to address my case properly. I was at my wit’s end with Blue Shield. I’ve probably logged OVER 85 phone calls with them in 2010 alone, most of the time I was so sick I could barely get up from my bed and infusing medication into my picc line. CBS KPIX San Francisco agreed to do a piece on my story. (Click here to view the piece )
After CBS KPIX contacted the CA Department of Managed Health Care (DMHC) and the CA Department of Insurance (CDI) – state agencies who oversee insurance denials and disputes –, and the segment aired, Blue Shield agreed to  cover my IV meds for one of the preceding last 10 months of 2010″ Mona explained.

After this incident, Blue Shield of California continued to cover her IV supplies and antibiotic therapy for the next approximately 8 months. However, she recently received a January 2012 notice claiming  that Blue Shield of California covered her IV meds and supplies by mistake and they are now going to recoup all of the money they paid to the pharmacy and infusion supply company. Mona just received a bill for  $2,520.51.

IV medications are traditional western medical protocol. If this is not covered by insurance one can only imagine holistic treatments and their dent on the wallets of these patients.

It is now January 2012 and Mona recently had her picc line removed and completed 1 year of successful IV antibiotic therapy. Though the IV antibiotics helped her get better, she was not completely healthy again because she was unable to complete the remaining therapy due to stomach and pancreas damage.

Through a recent 5 months of treatment with a successful physician who specializes in the unique holistic treatment of many serious illnesses including Lyme disease in New York.  Mona’s out of pocket expenses totaled $20,000.  The  treatments she experienced are defined as  ‘holistic’ compared to traditional Western medicine.  They consisted of European Biological Medicine, homeopathic medicine, supplements, Bioenergetic medicine, and other intravenous non-drug-based therapies.  Although her health and vitality have returned after this treatment, her continued medical bills to maintain that regiment total about $1500 dollars a month.  Additionally, she pays about $2000 dollars a month in other Western medical costs (health insurance, deductibles, etc.).

“It’s a sad state of affairs that this disease and so many others can be treated by holistic methods and yet health insurance covers NONE of these options” said Mona. “Insurance just began to cover acupuncture, but not mine. The practitioners who get the best results and cure people are not covered by insurance, leaving only those with access to credit or money to pay for it. And, in my situation, I am still unable to even pay my basic living costs, let alone my roughly $3000/month in medical bills without any income. Even with income, it would be impossible. My parents, who are in their late 60’s and early 70’s, have maxed out their credit cards and used their retirement savings to help me get better. I have also maxed out all my credit cards. I currently have over $30,000 of credit card debt from medical bills.

Lyme disease treatment and diagnostic protocol are ideal examples of the corrupt, broken medical insurance system the United States currently operates. How is all of this medical debt contorting our economy? Is it really effective to force patients to shoulder the burdens of such expensive treatments? Millions of Americans cannot even afford health insurance and those who can still receive denials of coverage for necessary yet costly medications.

A past interview with Anne Helen, a heart transplant patient, for “50 Women” also revealed the broken healthcare system as Anne Helen reported having to accept state  medical benefits generally given to low-income individuals since health insurance companies refused to cover her- subjecting her to income caps and welfare regulations. The fact is no insurance company wants to cover a patient with her medical history or Mona’s and they are not forced to. It is the government who must accept responsibility in these cases and ultimately taxpayers.

Recent progress in Lyme disease legislation reveals the changing landscape of how Lyme disease is viewed and treated. The central element in this debate which must be modified are the IDSA treatment guidelines, as these are central to insurance treatment policies and health facility treatment protocols.

Sign the IDSA petition here

If you are interested in donating to help Mona with her medical debt, please visit http://monamorphosis.blogspot.com/p/donationsfundraising-for-medical.html  The donate button is on the top of her blog.

View Mona’s testimony on CBS-KPIX San Francisco

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2012/01/06

Joy or Above: The Happy Rebel

Rebel: (n) A person who resists or denies mainstream authority

 Zafira was always a unique girl who sidestepped common, restrictive traditions in her home country of Jordan. She never wore the hijab, according to Islamic custom. She never entered an arranged marriage. She never had a family. Now in her adult life, Zafira dares to live alone as a single unmarried woman- a lifestyle very uncommon with women in Jordan. After leaving her traditional job years ago she currently pursues an entrepreneurial endeavor in the form of an emerging branch of social science research that she believes women in Jordan desperately need: Positive Psychology.

“Happiness is not a very accepted concept in Jordan, especially for women. Here women tend to put everyone else before themselves. The family’s happiness is more important than hers. I want women in my country to learn about how Positive Psychology can work for them because they deserve to be happy. They deserve it for themselves”.

Positive Psychology is an emerging branch of Psychology that emphasizes using traditional practices of the scientific method in order to understand how certain mental processes such as changes in happiness levels function. In essence, it is the study of human thriving. Positive Psychologists currently in practice generally do not aim to treat mental illness rather aim to make normal life more fulfilling. It seeks to use the scientific method not to describe how things go wrong, rather how they can become right.

Zafira established Joy or Above, a coaching initiative aimed to teach the principles of Positive Psychology. It is much less of a taboo subject in the United States and is becoming a quickly accepted method of practice in life coaching and counseling professions.

However, in countries with excessive religious following such a notion is too foreign and threatening to the common belief system to be quickly and readily accepted.

After personally experiencing the changes Positive Psychology has made to her life, Zafira is dedicated to pushing its concepts to other Jordanians no matter the criticism she receives.

I more than identify with Zafira. It’s a difficult to be in the position of the forward thinker. In fact, all of history’s brilliant minds were in this position at one point or another: introducing foreign concepts only to have most object to such new and innovative ideas. The fact is- people are afraid of what they do not understand; especially when it challenges their traditional beliefs or their common notions of everyday life. When Albert Einstein introduced the Theory of relativity, many thought he was insane. When Sir Isaac Newton introduced the notion that light is made up of particles, the scientific community went up in flames of fury. Thomas Edison himself failed an alleged  200 times before successfully completing his invention of the light bulb. Just imagine how many people probably criticized him for continuing with his work? Thankfully he never listened to any of his critics because he forever changed humanity.

Growing up in southern American culture, my entire youth I felt like the odd woman out. Perhaps some would argue with me on this but it is not a common or valued personality trait for women in the southeastern United States to be intelligent or idealistic. It is more accepted for them to be “pretty” and “soft-spoken”. Since my early childhood, I was always well read and very outspoken about my beliefs and world views.

I wrote for various school publications and openly participated in debate clubs including Model United Nations. I also performed acting controversial roles in local theatres Controversy, I always believed, was the necessary earthquake in public perception; a phenomenon directly and forcefully challenging common traditions and beliefs held by society. My gravitation towards controversy, I believe, is what ultimately alienated me from many people. The concepts I wanted to discuss were too foreign and too far outside the common Christian belief system of the culture for most to accept. That was ok with me. I was proud to be the contender.

Zafira is a trailblazer and I want to honor her as that in “50 Women”. I admire her for her audacity and courage to take such an innovative step forward despite extensive criticism. It is people with her initiative that ultimately mold this world for future generations. Initially what interested me in Zafira’s story was not her business or even Positive Psychology (although it’s been a very worthwhile discovery) rather her revolutionary will to stand out; her dare to be different.

“My biggest wish is for everyone to learn how to be happy. I hope that anyone reading my story would see that it is the most practical and intelligent thing to do. They just need to open their hearts and minds to these concepts. I don’t care if people think that I am strange or different for the things that I advocate for. I believe in myself and my work and that is the ultimate strength. I think people will eventually catch on to what I advocate. It is a new idea and new ideas are always met with skepticism and criticism until people become acclimated to them. If it takes me to appear awkward for one day thousands of women to be happy, then so be it. It is a sacrifice I am willing to make because I believe in what I do so strongly”.

View Zafira’s initiative at: www.joyorabove.com

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