Ola Abu Alghaib: an activist for women with disabilities

In November, we wrote about an amazing conference. It was born from the realization that women’s leadership needs to be a priority in the health ‘business’ landscape. Not only because women’s voices should be present at the ‘decision making table’, but also because a new narrative on leadership is needed for all the young women and girls out there.

Girls need female role models to look up to. They need role models who can inspire them to work towards their own goals and tell them that nothing is impossible. Role models who say: ‘you can, and should, fight like a girl in order to become whoever you want to be!’

Inspired by this feeling, Swedish Organization for Global Health wants to share the story of some of these role models. We hope you will feel inspired and relate to them. Maybe you’ll even decide that, yes, this is exactly what I would like to do too!

First up is Ola Abu Alghaib, the current Director of Global Influencing and Research at Leonard Cheshire – an organization supporting people with disability to achieve their goals and live life at their very best.

Photo credit: Ola Abu Alghaib

Ola embodies the real meaning of the word activist.

Her job is to fight for the rights of those who are generally underrepresented or even ignored by society – women and men who live with some form of disability. Her work tells you exactly what kind of person she is, but it doesn’t tell you for how long she has been an activist, or why she became one.

Her life is the expression of leadership. Ola was born north of Nablus, West Bank, in Palestine. Like every child, she had many dreams and goals for her life.

When she was just 14 years old she underwent surgery, but a mistake during the operation resulted in Ola losing the ability to walk or move her right hand. Ola says, “this was obviously very shocking, but it didn’t change who I was and what I wanted to achieve in life”.

However, she soon realized that people around her started to see her differently. Many thought she could not live a ‘normal’ life, that she was broken, and that the only option she had left was to survive. Ola proved those people wrong. She was, and continues to be, a very determined and ambitious woman.

She is not just writing her own story but is also influencing the lives of others on her way.

After completing her first degree, Ola came across the German Organization for the Disabled, who decided to invest in this smart woman. Through them, she started to work in a rehabilitation center that supported people with disabilities. In the following 8 years at the center, she was aware that she was the only woman working there.

She felt that women with disabilities were not being given the opportunities they deserve, and knew was time for NGOs to act and involve more people. However, the issue seemed to fall on deaf ears. Her response?

Ola founded Stars of Hope. Their mission is to abolish disability and gender discrimination, while empowering women with disabilities to achieve their goals.

From that first step into advocacy, Ola has done so much work to bring the voices of women with disabilities into decision making rooms, such as the UN disability committee.

“Access to services continues to be a challenge for women,” she says. Influencing policy is fundamental to changing that.”

Ola has often underlined her belief that women with disabilities are generally forgotten by the feminist movement. She says this happens because disability-related issues make things even more complicated for women’s rights advocacy, but also because women with disabilities don’t ask to sit at the table. She says:

(1) We need to understand what disability means for a woman
(2) We must make sure disability receives as much attention as any other issue
(3) Women with disabilities need to demand their seat at the table

When I asked what leadership means to her, Ola told me: “Leadership is the privilege that comes with it”. If you are a leader, you should use that position to make your own contribution to improve things for others.

If you are a girl or a woman who feels, “I can’t be a leader,” and if you are suffering because of the way society defines you, Ola has this piece of advice: “The world is changing so take the lead and be determined, starting in your household.”

Feeling inspired by Ola’s story? Are you a woman with disabilities and want to become a leader in global health? Check out the following links that could give you some ideas about where to start, but remember – everything always starts from within, from you.

Ashoka Fellowship
Google Europe Students with Disability Scholarship
Wellcome Trust fellowships/scholarships

Women’s Reproductive Health is Under Attack

The medical device ‘Essure’ is an implantation method of sterilization that came to the market in 2002. The device received patient backlash from the outset and has since come under extreme scrutiny.

Over the years, women have reported serious complications from Essure and thousands have filed lawsuits against the medical device’s manufacturer, Bayer AG. Some of the complications women have reported are unintended pregnancies, tears and perforations of the uterus and other surrounding organs, as well as the sudden development of autoimmune disorders.

In summer 2018, Bayer announced the discontinuation of Essure. The company cited business reasons and stood by the safety and efficacy of the product. Sales of the device have declined significantly since April of 2018, a factor Bayer claim contributed to the decision to pull it from the market in the United States.

Essure has stood out as the only implantation method of sterilization approved by the Food and Drug Administration (FDA). But researchers estimate that nearly 10% of women who undergo the procedure could become pregnant within 10 years of implantation. This rate is nearly four times higher than traditional methods of sterilization, such as tubal ligation.

The device consists of metal coils which are inserted into a woman’s fallopian tubes to block sperm and prevent it from reaching the eggs.

It’s expected to be fully effective after three months following implantation. The procedure is done in-office, with the expectation that women return to normal daily activities the same day. Many women report mild to moderate pain or discomfort immediately following the procedure.

It is estimated, however, that nearly 10,000 of U.S. Essure patients required additional operations after their original procedure. This is due to anything from severe side-effects, the device traveling to different areas of the body, or perforations and tears requiring medical procedures.

Dr. Katy Moncivais, PhD, Medical Writer tells me: “Essure fails every test – it’s less safe, less effective, and more side effect prone than most other methods of birth control.”  

Side-effects include – but are not limited to – pain with sex, back pain, abdominal pain, severe menstrual cramps, and severe pelvic pain. There have also been many reported cases of unintended pregnancies while the device was implanted. Some women carried the child healthily to term, but many experienced ectopic pregnancies, stillbirths, or miscarriages.

In the years since the device came to market, the FDA stepped in several times to regulate the product. The first steps to regulating were to enforce label changes on the device and to include a boxed warning to advise physicians and patients of the potential dangers. After these regulations were enforced, sales began to decline.

The United States was the last country to stop selling Essure to the public. Other parts of the world, including Canada, Europe and the United Kingdom, either chose to discontinue the device themselves or had it pulled from their markets by Bayer.

Activism has been central in the story of Essure.

Thousands of affected women are part of a Facebook group called Essure Problems. Last year, Netflix released The Bleeding Edge, a documentary on the medical device industry which features a section on Essure’s risk to women. A week after the documentary’s release, Bayer announced their voluntary discontinuation of the device.

Women’s health and bodies must not be compromised in the name of innovation, business or profit.

Essure was marketed as an easy method of sterilization for women who no longer wish to get pregnant. But from perforations in organs, development of autoimmune disorders, and unintended pregnancies, it has proven to be dangerous, or even life-changing, for far too many.

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Take to the Streets & Demand your Rights

“When women work together, it’s a bond unlike any other.”
– Victoria Principal

At times when change is needed in society, the streets become more important than ever. When our minds are full of fear or worry, and when a problem is right there but no one will look directly at it – action needs to be taken. When it seems no one will raise their voice and insecurity becomes part of daily life, we start to understand the importance of the streets as more than just roads.

For people who agree that public problems are political matters, streets can be the best places to express ideas.

Great movements have been made from the streets. They give space to everyone; a person, two more, and a bunch of groups of people. People pay attention to those brave enough to speak, out loud and in public, for what they believe in.

If everyone stayed at home, sick and tired of discrimination, then nothing would ever get better. But when you find people who share your desire for freedom and equal rights, then nothing can stop you.

Our global history has been shaped by those who have taken to the streets to demand their needs and rights.

The world wouldn’t be the same if Martin Luther King Jr. hadn’t occupied public space. If women hadn’t gone out to march for their right to vote, society wouldn’t be the same today.

Women have long tried to empower themselves by exposing inequality, even when the system seems almost totally against them. Today, women, and some great men (with hopefully many more to come), are fighting the patriarchal systems that oppress women and restrict men.

Women continue to claim the streets as places to raise our voices and express ourselves.

It is on the streets that we can make the violence, persecution and oppression facing women visible. In public spaces we can demand what we deserve: rights and equal recognition of our role in society. Because women matter.

Peaceful protest is part of our right to free expression. It is a right that hasn’t always been enjoyed by all women around the world, and continues to be denied to many.

If you are able to raise your voice – my advice is to do it! Meet with your friends in public places, speak up about street harassment, open up space where women can feel safe to speak. Go ahead and give feminism what it needs – your voice.

We need to remember the importance of public space for activism.

Our streets hold great power and potential for social organization. Women can achieve monumental changes. And we should keep trying to do so, because the fight of some should be the fight of all.

All Teachers Need Mandatory Training on FGM

Written by Katrina Lambert (18) and Caitlin Moore (18) – Youth For Change UK members

Ever felt like decision makers aren’t listening to young people? That our voices are ignored and belittled in society? We certainly do sometimes. And we’ve decided to make some noise about it.

We are members of Youth for Change, a global network of youth activists who aim to tackle gender-based violence.

The best way to create positive change is through young people working together to make a difference. We are the ones affected – we should be the ones influencing policy.

Over the last few years we have been tackling the issue of Female Genital Mutilation (FGM). FGM is a form of violence against girls. It can result in a lifetime of pain, psychological problems and difficulty in childbirth.

Around 125 million girls have been cut worldwide. An estimated 137,000 girls and women live with FGM in the UK.

In 2017, our research found that 90% of young people surveyed said that learning about FGM as part of Relationship and Sex Education (RSE) would help to protect and empower them and their peers. This was the focus of our campaign to get FGM in the RSE curriculum.

Therefore, we were incredibly excited when it was announced that Relationship and Sex Education (RSE) would be compulsory in every school in England as of 2020. Education plays an absolutely crucial role in young people’s lives (as two school students, we can verify this 100%).

Having FGM taught in schools is our chance to take a step forward in ending this harmful practice.

At Youth for Change, when the Department for Education released the online curriculum consultations, we engaged with our networks and communities to strengthen the voice advocating for FGM to be included.

We fed this back to the Department for Education when a group of us met with senior civil servants last year. We also met with Carolyn Harris MP, Shadow Minister for Women and Equalities, to discuss the importance of empowering young people through educating them on FGM.

As a result, questions about FGM being a priority area of the new curriculum were raised in Parliamentary Questions, to the then Home Secretary, Amber Rudd MP.

In February 2019, it was celebrations all round. We heard that FGM was to be included as a topic in the curriculum. However, as tempting as it may be, we can’t stop now and pat ourselves on the back.

Yes, we have taken a monumental step in the direction towards eradicating FGM. However, in order to ensure that the new curriculum can appropriately educate and empower young people on the issue, teachers must feel equipped.

This is why Youth for Change is calling for mandatory training for all teachers on FGM.

Our research shows that 94% of young people feel school staff don’t know enough about FGM. If there is any chance of the the new curriculum guidance achieving its fullest positive impact, teachers must be trained.

When students are aware of the issue and feel confident that their teachers understand it, then they will naturally feel more protected and comfortable in opening up conversations. This is essential in increasing reporting and saving the lives of thousands of young women and girls across the UK.

Mandatory training for teachers will ensure that every pupil in the UK gets equal access to the FGM education they deserve, regardless of what part of the country they happen to be educated in.

The benefits of training teachers in FGM are not limited to students. It will also empower teachers to feel equipped to take on their role.

In fully understanding their legal responsibilities, including mandatory reporting, teachers will able to confidently safeguard their students and signpost the correct support. Training is absolutely essential. Without it, the huge changes to the curriculum will not be able to support and educate young people.

What can you do?

Get involved with us as we continue to press for standardised, mandatory training for teachers on FGM! Find us on twitter @YouthForChange. And while you’re here, support all of the other amazing activists in our network, such as IKWRO, who are calling for FGM to be tackled earlier on in education.

We’re not going to stop making noise. We need to ensure that the education young people receive reflects what they want and need to learn. We very much hope that the Government will listen to our calls to introduce mandatory training. Together, we can move even closer to eradicating FGM in the UK once and for all.

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