Helping Hurts

There’s a story about a New York Times reporter who interviewed Mother Teresa. He followed her for a day as background for a story. After a few hours, they had walked only two blocks, stopping repeatedly as she knelt to pray and hug the poor living on the streets. He finally blurted out, “How do you ever expect to be successful when the need here is so overwhelming?” After a few moments of silence, she responded, “It never occurred to me to be successful. I’m just trying to be obedient.”

By all accounts, Mother Teresa was an exceptional humanitarian worker. She was someone you would be proud to know. Since her death in 1997, she has been nominated for formal sainthood in the Roman Catholic Church. Few would doubt her deep faith, sincere motives, and far-reaching effectiveness. Yet, many were shocked when her private diaries revealed that she was tortured by a growing sense of unworthiness and nagging questions about whether God had abandoned her.

Rather than the result of a lack of faith, I suspect Mother Teresa may have been the victim of vicarious trauma resulting from decades of work with victims of poverty, famine, and disease. Perhaps she was eventually exhausted and overcome by the human suffering that surrounded her. She took on the emotional wounds of others, leading to her own mental and spiritual depletion.

I suspect she's not alone! Research and clinical experience demonstrate that this is a common experience for many who work in caring ministries. More than 25% of us have struggled with emotional problems caused or made worse by the work we do. The things you’ve done, seen, and heard have changed you deeply and permanently. You may be stronger and wiser than ever, but you may also feel sadder, less optimistic, or even numb. Helping hurts!

We all know this, Yes? That's why it is important to be aware and sensitive of one another - that's why team works so well. Sure, we need to build our own resilience - know why we do what we do, know our values, understand our beliefs and recognise our attitudes. We need to recognise how we will respond and react - allow ourselves to be, don't pretend to be superhuman and invincible. But perhaps most of all we need to support one another - and, when necessary, do that thing that comes hard to most of us - ask for help.

This work we do, can (has and will) take its toll, but as we look for ways to travel one another's journey, to share each other’s load, we build much more than individual resilience - we build a sustainable and transformative team – and we build and hold on to hope!

“There is a saying in Tibetan;

'Tragedy should be utilised as a source of strength.'

No matter what sort of difficulties, how painful experience is,

if we lose our hope, that's our real disaster.”

(Dalai Lama XIV)

Ireli:

As I sat at the board room table of the Ireli Youth NGO in Baku's Old City (Icherisheher) I was reminded  of why it is so energising to work with young, passionate, creative people, (don't I sound old, and don't I know it!) and why it can simultaneously be a challenge. A colleague made the comment that it was like trying to herd the stray cats of Baku (of which there are many).

Ireli, a youth led and focused NGO has been in operation since 2006. During that time these 18-29 year olds have racked up an impressive number of donors and projects and they have created a very influential reputation in the country.

So when we were looking for a partner to create, build and deliver a public awareness campaign that would educate the people of Azerbaijan on the importance of the social inclusion of people, especially children, living with disabilities, we chose Ireli to help us.

The Chairman, 26 year old Rauf, sits opposite me telling me about the initiatives - he taps out the facebook pages, the twitter accounts, the web.tv and the NGO's URL on his iPad - as he explains to me how they will upload the public service TV spot onto their YouTube channel and it will automatically populate to all their Internet sites. He shows me the 55,000 "Likes" on one of the facebook pages and tells me that all their web sites combined will attract about 100,000 friends.

He then explains that today they will publicly launch the Disability Coalition's (another of our projects initiatives) web site [www.supportcoalition.az : coming soon in  English] and officially release the short video that will feature on TV spots over the next months in an effort to increase the visibility of disability inclusion. Combining with other initiatives to lobby government to enact policy on disability (inclusive education and health), this TV and social media campaign is one of the pillars of the initiative. And, of course as the special guest I will be speaking and launching the video...

These are an excited, and exciting group of people. With over 26,000 members in Azerbaijan they carry some weight, and when they support an initiative, apparently people take note. Within hours of the release the reports began to make the news. News.Az reported on the afternoon.

But the important thing is that the message about the social inclusion of people (especially children) living with disabilities is getting out there, and after the presentation one young woman, a student, approached our project coordinator and asked how she can get involved. That's what we need, people getting involved, and people caring!

Behind More Walls

Meet Nuray. She was born 7 years ago with Cerebral Palsy, but when her father didn't want to know her, Nuray's Mum went back to her Mother's house. Soon after she met another man, who told her to choose between him and Nuray - she chose him. So, today Nuray is cared for by her Grandma.

After climbing up the stairs of the grey concrete, post-Soviet apartment block we were welcomed into the tiny two room apartment, by grandma who had obviously spent some time preparing for our visit. Nuray was lying on the floor near her blocks, she was clean, her hair done and her clothes obviously just pressed.

As I walked into the room she hid her face in her arms, and as kids do, she peeked out every now and then to see if she was the centre of attention - which of course she was. It didn't take too long, playing the universally accepted ice breaker of "now you see me, now you don't" to get a smile out of her. She is a gorgeous little girl.

But (as I have mentioned already) she cannot go to school and her grandma has not received any government support for her. But, through a friend of a friend, Nuray and her grandma were referred to our Community Welfare team, and today we are here to confirm that Nuray has an assessment date. Her level of disability will be assessed and as a result she will go on the "Commission of Minors" list. That means that she and her grandma will receive a government pension and as of 2013 she will be registered on the Home School list.

As we left, Nuray was just getting to the "over this stage", the small tower of blocks she had built came tumbling down, and she lay down on the floor and hid her face in her arms. But just as I said goodbye in my accented, lousy Azeri, she smiled - one of those smiles that start with the mouth and end in the eyes - that's Christmas!

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Just across the road from our office in Baku there is one of those nice walls I've mentioned before. I've walked alongside it numerous times on my way to the office. But the other day, I went behind it... I had no idea that right here in front of our office, in a section of concrete about 15m2, there are 8 homes. 10 families, 51 people live here.

Meters away, on the  the busy main road, on the sandstone clad side of the wall, international brand shops (like Guess, Tiffany, Gucci and Pierre Cardin) attract people in BMWs and a Bentley.

Irina (right) lives in one of the 'houses' smaller than my hotel room, with her Mum, a 19 year old sister, an 8 year old brother and a 2 year old sister. I take two steps through the door and I am at the door to the main room, in the back right corner there are four mattresses piled one on top of the other. In the left corner, hard up against the mattresses there is a cupboard. Just to my right, is a small table stacked with some cooking equipment and plates - five steps gets me from the front to the back of the room.

Surprisingly, as I look out the only wondow, I see a WiFi modem hanging on the wall. The 19 year old sister is in University, studying - the internet is an essential luxury.

Irina shows us around, shy she is not; but despite this 'minimalist style' of living, the family, and those around them welcome us with tea, and share their stories. They smile, they laugh, they share - and thanks to the Community Welfare workers this family are now on the social benefits list and getting some support.

Meanwhile, in Afghanistan

Since my visit to Afghanistan in February this year we have been working with an IDP community to establish a community based education program. The current school is an old clinic with 7 rooms, (each about 15m2). There is an enrolment of 3,000 lucky children, (there’s no room for the other 3,000) and an average class size of 90; the boys in the morning and the girls in the afternoon.

Many of the children from 8 years old up work on the streets in the city, or make adobe bricks to help their families survive. Most of the men and teenage boys go into the city looking for day work. But the parents would give up the extra, child generated, income for an education for their kids.

Simplistically: our goal is to bring community based schooling to the kids that are currently missing out. It's been a long process and I am hoping that by the end of this year, that thanks to the work of the Afghan team we will have an agreed project. But a significant stepping stone was achieved yesterday...

Nothing (worthwhile and sustainable) is possible in an Afghan community without the agreement of the local shura leader (community management). For the last few months the team have been talking, explaining, amending and drinking tea with the Maslakh shura leader, and yesterday finally we (literally) got the thumbs up. This is exciting news and means that next year we can begin work towards refurbishing, equipping and expanding the existing school, whilst at the same time working to introduce some home based schooling. Boys and girls will get to go to school!

Thalassemia Major

Sixteen years ago Gunel was born with the disease thalassemia major. Children born with the disease are normal at birth, but develop severe anemia during the first year of life, and have a life expectancy of 20-30 years. That is if they can get regular blood transfusions, and treatment.

When Gunel comes into the room, I know she's not well, but I didn't know any of this. She looks maybe 12, and is not much bigger than her 6 year old brother, Samir. It is obvious that she has not grown as normal, that she is jaundiced and has some facial deformities, but her mum tells me that she is also constantly fatigued - pretty much all the symptoms of thalassemia major.

For a child to be born with the 'major' form of the disease, both parents must be carriers of the defective gene. This knowledge, which came in hindsight, has resulted in the divorce of Gunel's parents; and mum blaming herself.

Because she's sick no school will accept her, and when she was referred to our team of Community Workers by a neighbour, her mum was having trouble accessing blood transfusions and treatment. There are no health benefits here; there is a public hospital system, but that doesn't mean it is free or affordable and as for blood - well, get in line and be prepared to pay.

Not to be beaten, the case worker turned to social media; she put Gunel's story on Facebook and asked her 'friends' to volunteer to give blood. So far, it has worked, each time Gunel needs a transfusion they are able to find a volunteer. But despite the treatment school is still out of the question, so Gunel attends the day centre managed by our partners (UAFA) and she loves it. She has attended dance and drama classes and recently participated in her first stage production. But most of all she loves art, and in particular bead work.

As we leave the neat, clean 2 room (50m2) house with no bathroom, Mum comes with us to talk in private with the case worker. Making sure Gunel and Samir are still inside, she tears up; she has recently discovered that thalassemia major children in this country do not usually live until they are 16.

Behind the Walls

Last year when I visited Baku, one of my most vivid observations was the beautiful walls. Today, I had the chance to venture behind the walls.

In the shadow (literally) of the Kempinski Hotel, Badambar, "Your 5 Star Luxury Hotel", there is a very poor IDP community. The families have been here for almost 20 years now, before the Hotel was built, and in that time they have received no government support for the development of their community. The roads up to and past the Hotel are sealed, but behind and beyond, it's 4 wheel drive territory.

I am here with a team of our project's Community Social Services workers; 3 women from among the national complement of 20-25 qualified social workers who are charged with case managing families and children that are referred by neighbours, doctors or schools - and primarily disabled children. We have come to meet two beautiful little kids, Emin and Asiman and their grandparents.

Asiman, now 9 years old, was born with epilepsy, but she had been attending school for two years before having her first fit at school. The school immediately "expelled" her - they did not know how, and were unwilling to deal with a child with epilepsy. At about the same time, Emin, now 7 years old, had his first fit.

Both children are now ineligible for school and because they are not officially diagnosed with epilepsy, they and their family do not receive medical or any other government support. But they knew no one to ask about the process, and they were frightened to go to the hospital. They knew of too many cases in their own community where people had presented for public (free) hospital or medical support only to leave empty handed when they were informed of "the cost". So they managed.

Today, thanks to the team's contacts and advocacy, Grandma was told that the children had an appointment next week with the hospital and that there would be no "costs". This means that the children will be officially listed on the Government system; they will be able to receive subsidised medications, their family will receive a government benefit and Emin and Asiman will be eligible to receive home schooling in 2013 onwards. (There is a way to go, with some other advocacy work happening, to enforce a policy for inclusive education.)

Emin and Asiman's case worker will follow them up once a week for the next three months and then if things are going alright, they will visit once a month for a further three months, and then once every three months, and after twelve months, if there is no more that we can do to assist, their case will be closed. (But once invested in the lives of kids, it is hard not to remain involved - and who can force that.)

Emin and Asiman are just two of an estimated 60,000 "disabled" children in the country who are "shut away at home". In the past an acceptable and government facilitated option was to institutionalise these children - but with a government policy of de-institutionalisation, today there is a desperate need for Gatekeeping initiatives like ours. The journey to close all institutions (with about 14,000 children still in institutional care) is a long way from over, and it needs a lot of support.

Thank you to the Aussies that are financially supporting this project - trust me, your donations are making a difference.