Disability Inclusion in Development

Outside staccato horns blare in constant discord, hungry crows complain in hungry unison, kamikaze tuktuks like angry mosquitos cut through the traffic. Here inside the workshop room, a group of 25 of us are talking about inclusive development. The speaker is hearing impaired, she cannot hear any of the auditory chaos that assaults our ears and makes it difficult to hear her voice.

Our day started with the story of Jesus turning over the tables in the temple and by doing so advocating for access for all people to the place of worship. “Please try to find ways to remove the barriers”, the speaker (a Sri Lankan Methodist pastor) said, “don’t ignore my disabled son” he pleaded, “look for paths to make him feel wanted” he begged. As he spoke an Australian sign interpreter stood beside him translating the words of a Tamil man for a Sinhalese deaf man and an Australian deaf woman. (Different dialogues and languages they tell me - so we go between International, British and American.)

As the Sinhalese man (from Deaf Link) signs his prayer for us he asks that “we will see the importance of the subject”, his signs are obviously full of energy and passion, his face broad with a smile as he prays that the fact he is welcome here and fully included, is a catalyst for change and a sign of hope.

This is an important milestone as we endeavour to make sure that in this new project we are not just doing things for people but that we are doing all we can to ensure that disabled people are full participants and partners. That’s basic development you say, and it is, but even today many organisations (including us) would prefer to deliver services: it’s easier, it’s quicker and it provides good photos and statistics.

Inclusive development is harder, it takes more time, and it requires more creativity. But the catch phrase, nothing about us without us guides our design, our intentions and our hopes.

As the cacophony of chaos continues unabated outside our deaf Sri Lankan colleague is teaching us to say, “hello, I work for World Vision”. Small steps but vital as we seek to transform the lives of some of Sri Lanka’s most vulnerable people in the North.

Link to:
UTube Link to a video produced by Deaf Link Sri Lanka
Deaf Link Sri Lanka's Facebook page.

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!

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.

Together for a Better World for all: including persons with disabilities in development

As part of the celebrations to mark IDPWD, the Australian Disability & Development Consortium (ADDC), in conjunction with CBM Australia, will be holding an art exhibition at World Vision.

You are invited to view the art exhibition at the World Vision entry foyer, 1 Vision Drive, Burwood East, between 7 December and 8 December.

You are also invited to an afternoon tea to be held in the Auditorium on 7 December at 3:00pm. The artists featured in the exhibition have been invited to present and tell the story of their work. The exhibiting artists will also have their biographies and stories showcased. Light refreshments will follow to mark the celebration.

The intent of the exhibition is to show the work of Australian artists who have a disability, and to promote their abilities and opportunities. These works will be exhibited with complementary case studies that reflect the different opportunities of people with disabilities who live in developing countries.

The subjects of the case studies chosen have similar disabilities as the exhibiting artists. The organisations providing the case studies are CBM, End the Cycle, World Vision and Yooralla.