Picture
Members of the Manus United Disability Association













NDRAC's VSO volunteer Ed Howarth gives his account of the progress and challenges facing the disability sector in Manus Province on a recent personal visit to see his wife who has been working in Manus with the Provincial AIDS Council.

"I’ve been in Papua New Guinea for only 4 months, so I am learning a huge amount about the disability sector and was keen to use some of my time up in Manus to meet a few of the people working to improve the services and rights of people with disabilities. This is by no means a detailed look at the work that is going on in Manus, it is just a snapshot from a few conversations and interviews with a variety of people

On arriving in Lorengau, it didn’t take long before I was pointed in the direction of Lorengau General Hospital to meet a lady called Emily Sombe, Manus Province’s first Papua New Guinean physiotherapist.

Physiotherapy is a relatively new service in Manus, it has only been available since 2008. At that time it was provided by a VSO volunteer who then passed over the responsibility to Emily in 2009. Emily now works alone and spends half her time treating patients in the hospital wards and half her time with outpatients. Emily was positive about the progress that she had made and the increase in the number of clients she has but she highlighted a number of big challenges.

The first being the lack of resources she needs to provide the services she knows her clients need and secondly, the lack of transport in order to deliver outreach work to the many hundreds of people with disabilities who are unable to reach Lorengau General Hospital for treatment.

My next stop was Callan Services based in the centre of town, here I met with Liwer Mohe, the centre Coordinator and two CBR officers, Ignastius Sapatale and Elizah Johanes. The centre provides adult literacy and vocational training to people with disabilities.




They also deliver ear and eye assessments out in the communities to help with early intervention, alongside promoting inclusive education and health services for people living with disabilities. Again the challenges facing Ms Mohe was the lack of resources to expand their programmes.

During this meeting I began to hear about the Manus United Disability Association (MUDA), an organization that has been established by PWDs for PWDs. Another short walk and I was at the home of Nickson Solomon, the Chair of MUDA.

MUDA was started in 2008 by Nickson Solomon and several other PWDs to help raise the profile of people living with disabilities in order to advocate for their rights to the Manus Government to ensure services improve for PWDs. MUDA also works hard to try and change attitudes about disability to help break down some of the barriers to a truly inclusive society.

Attitudes are changing in Manus, and as a result, this year over 40 PWDs took part in the Provincial games for the first time in Manus’ history, which is a great step forward.

Currently MUDA has around 20 members including; Disability and Women run by Christine Ndrepolou and Manus Disability Sports Association, who are currently fundraising for the PNG Games in Kokopo.

It was clear from talking with a number of the members of MUDA that they were in real need of training and resources to help build MUDA and the other DPO’s in Manus into organizations that can have a real impact. Importantly, Nickson felt that MUDA needed training alongside financial resources. We both discussed how money can often lead to the collapse of an organization, if the skills needed to manage the money and the projects are not there beforehand. I hope that PNGADP and other agencies will look at developing a training programme for DPOs across Papua New Guinea to help build their capacity in these areas. 

My week in Manus was inspiring and I was impressed with the dedication of people who are supporting the development of a more inclusive society. There are without a doubt many challenges facing people with disabilities in Manus. But I felt that if they were given the recognition that they deserve, then the disability sector in Manus has the potential to become strong through building on the institutional services provided by Emily Sombe in the physiotherapy department and the services provided by civil society through Callan Services and most importantly supporting the growth and development of a strong voice through the various Disabled People’s Organisation in Manus."

 
Picture











In 1992, I suffered from meningitis which caused severe damage to my optic nerves. My doctor told me that I was permanently blind.   I could never see again and enjoy life for the rest of my life.  Out of desperation, I asked if there was still a way possible.  His response was when a nerve was dead within the central nervous system that was its permanent death.  the only possibility of the restoration for such was outside the central nervous system.  That can be pursued later in life through other rehabilitation practices.

I went home saddened, feeling empty, hopeless and meaningless without sight.  I was thinking of ending my life. 

On the following year, Ms Lucy Japu a young Community Base Rehabilitation (CBR) worker from the Creative Self Help centre for the Disables visited me after receiving a referral note from my former employer the Lutheran mission education secretary, Mr. Selmai Kazu.

Since then she visited me weekly on every Wednesdays for ten years with her CBR skills just to convince me that there was life beyond blindness regardless of my disability.


In 2001, on one of her many routine visits she shared with me one of her CBR experiences About how she assisted a little boy with cystic fibrosis to get on to a new wheelchair while the boy’s parents said and thought he couldn’t make it.  However, regardless of the negative comments the boy did get onto the wheelchair.  I realized that she was in tears when sharing that experience.  That gave me something to think about. 

Here I got out of my stubborn will and got fully involved in many of the CBR programs for the last nine years.  I got empowered by attending various capacity building seminars, trainings, workshops and meeting other people with disabilities and sharing life experiences both in and out of the country which gave me a different approach to life beyond blindness/disabilities.

Although I still have many challenges as I move on in life each day I can at least SMILE and say thank you to God , my families friends , the many people and organizations to name a few like; CBM who supports and fund the CBR programs for the Creative Self Help centre, VSO and others who came into my life and moved on in one way or the other had contributed to see the turnaround in my life. 

I am now employed as a teacher for the Blind and vision impaired children at the CSH-Special education resource centre.

My motto in life is Accept what you cannot change and Change what you can change and live one day at a time.

DO NOT LOOK AT MY DISABILITY BUT LOOK AT MY ABILITY.  Your ignorance is my disability.

Desmond Beng