The Network September 2009 Edition 19 Papua New Guinea

Assistive Devices

The NationalDisability Magazine

Beyond Wheelchairs

on page 4

Disability Awareness

Materials on page 6

Internet Access for PWD’s

on page 5

Doctor on Wheels

on page 13

HIV & Aids and Disability

on page 15

In this EditionCover Pictures: Prosthetic Devices Workshop, NOPS in Port Moresby

Page 3: What are Assistive Devices Page 4: Beyond WheelchairsPage 5: Paving the way for WheelchairsPage 6: NDRAC Advocacy T-Shirts and PostersPage 7: Hello We Are.......NOPS Page 8-9: News and EventsPage 10: Personal Profile - Meet Eki NamungoPage 11: Physiotherapy Page - Cassandra AkiroPage 12: Disability Awareness MaterialsPage 13: Doctor on Wheels; Dr John NiblettPage 14: Dorothy’s VisionPage 15: HIV Aids and Disability

The Network started in 2004 is a quarterly magazine for all people involved and interested in the disability sector in Papua New GuineaThe aims are to empower, share views, and spread accurate and inpiring information about disability in the country and abroad.

The Network is one of the activities of the National Disabililty Reource & Advocacy Centre. The magazine is free-of-charge, however we do like to encourage anyone who can to make donation.

The production of this national disability magazine is supported in different ways by, > Divine Word University > Creative Self-Help Centre > Voluntary Service Overseas > Callan Services > Government of Papua New Guinea

Partnership Development & Advocacy Officer: Marleen NelisseNational Disability Resource & Advocacy CentreDivine Word UniversityPO Box 483Madang • Madang Province • Papua New GuineaPhone (+675) 854 1892 • Fax (+675) 852 2812Email: thenetwork@dwu.ac.pg

2 The Network • 18 • 2009

Happy Belated 34th Independence Papua New Guinea!

As we celebrated Papua New Guinea’s 34th year of Independence in September, certain parts of the country, especially the Morobe Province were faced with – Cholera, Influenza and Dysentary. The Cholera epidemic spread from remote districts of Morobe Province to the urban centre of Lae. We extend our deepest condolences and sympathy to the families of those that lost their loved ones to the epidemic.

Drawing back to the theme for this quarters edition of The Network; ASSISTIVE DEVICES...

We bring to you a minute yet informative compilation of personal experiences of PWDs using Assistive Devices to improve or make their lives more convenient as well as conducive. Especially in their jobs, and their own individual situations; such as the story of “Dokta lek Bagarap” or Dr John Niblett of Angau Memorial Hospital in Lae, Morobe Province, a Radio Oncologist who moves around in a wheelchair whilst, examining, and treating cancer patients. Read more about him on page 13.

Apart from this issues theme, we are proud to announce our collaboration with the Madang Provincial Aids Committee (MPAC). Our aim of working in partnership with the MPAC is to elaborate and make known the fact that PWD’s are also vulnerable to contracting the HIV/Aids virus if not PWD’s are more at risk, especially women and girls. Read more about HIV Aids and Disability in PNG on page 15.

We’d like to thank all who contributed to this quarters edition: Rajesh Nanda of National Orthotic and Prosthetic Service, Nilam Shinde of National Wheelchair Service Network Project-PNG, Rafael Caballero of Mt Hagen General Hospital’s Physiotherapy Department, and Augustine Koroma of National Callan Services Unit.

Till December, happy reading and please send in your articles.

Yours in disability,

Bonnie Abola-Editor

Editor’s Desk

What is The Network

The Network • 19 • 2009 3

What are Assistive Devices

By Marleen Nelisse and Bonnie Abola

In developing countries in Asia and the Pacific, people with disabilities are frequently caught in a vicious cycle of exclusion from society and mainstream development programmes. Without appropriate assistive devices, they often lack the means to participate in education and training programmes for independent living and contribution to the development process. Because PWDs are not getting the appropriate education to develop skills it results in an obstacle to employment. Without any form of income they are often unable to purchase assistive devices.

However, for many PWDs assistive devices are a basic need and often as important as food and shelter.

Assistive devices (also known as technical aids, assistive equipment or assistive technology) are items that can directly enable people with disabilities to participate in the activities of daily life. People with disabilities may use assistive devices on their own or with the support of other people. For the majority of PWDs appropriate and affordable assistive devices need to be made available to them by government and NGO’s working on their behalf in order for them to live and work independently.

There are many types of assistive devices which have a major role in improving people’s lives. Communication boards help children with speech impairments to express themselves. Prosthetic feet and legs allow amputees to walk. Braille writing slates enable people with visual disabilities to record information by themselves. Computers help people with visual impairments to communicate in text format. Wheelchairs give mobility to persons with disabilities.

Assistive devices enable people with disability to participate in their activities in daily life. They reduce barriers between people with disabilities and their environments. In work, education or leisure, they bring about freedom of movement and greater ease of access. Assistive devices empower people with

disabilities to live with dignity as equal members of society and give them a new freedom and independence.

Which assistive devices are available for people with different impairments and/or disabilities? A white cane is for example used by many people who are blind or visually impaired both as a mobility tool and as a courtesy to others. The white cane is primarily designed to detect objects in the path of a user. In a few Western countries blind or vision impaired people use Guide dogs who assist the person to lead them around obstacles. However, most blind people still use canes only because guide dogs are partially color blind and not capable of interpreting street signs (which in big cities you find on almost street corner!).

The slate and stylus are tools used by people with visual impairments to write text that they can read without assistance. This is known by Braille. The slate and stylus are being used in a Braille machine which presses Braille characters, which is made up of six dot positions, in the therefore designated paper. The user reads the Braille by feeling the dots that were pushed up from the back of the paper. Mt. Sion in Goroka and St. Johns for the Blind in Port Moresby are currently the only two institutions which train people with a visual impairment on how to read and write in Braille.

Hearing aids are used by persons with a hearing impairment and come in different types and models. A hearing aid is an electro acoustic body worn apparatus which typically fits in or behind the user’s ear, and is designed to amplify and adjust sound for the user. Unfortunately this device has a very limited availability in PNG.

In Papua New Guinea, the available assistive devices comprises of prosthesis; which are artificial legs and hands, and orthosis; spinal braces, static and dynamic splints and braces for club feet. As well as this two, rehabilitative aids such as crutches, walking sticks, and walkers.

And lastly Mobility Aids like the more popular wheelchair.

Most PWDs receive these assistive devices through the National Orthotic and Prosthetic Services (NOPS) (See Hello We Are… page) from their centres in Port Moresby, Lae, Mount Hagen, Rabaul, and Aitape as well as other providers such as Creative Self Help Centre, and Callan Services. The National Wheelchair Project Network, started by VSO in partnership with Motivation and NOPS, is the first of its kind in PNG and has supports PWDs who need wheelchairs for mobility.

To provide access to the individuals who are doubly disadvantaged (poor individual and women with disability), the Wheelchair Project charges lower than the subsidized fee that covers the cost of assessment and fitting of a wheelchair. The Project set up a network with distribution centres in the physiotherapy departments in the general hospitals all over PNG.

Awareness about the services is spread by word of mouth through community visits, referral network, regular radio tok save and participation in health and disability event.

Nevertheless people with disabilities often belong to the poorest and marginalized communities. Therefore poverty can be a more severe limitation to participate in day to day activities than disability itself.

Nonetheless, poverty alleviation itself needs the availability of appropriate assistive devices. To fight poverty all members of a family, including those with disabilities, must contribute the family economy. With appropriate devices, along with changes in access and social attitudes, PWDs can contribute productively.

For this reason, in the rehabilitation of poor people with disabilities, it is especially important that the devices provided, facilitate their full participation in day to day activities so they can sustain in their own livelihood.

4 The Network • 19 • 2009

By Nilam ShindeVSO Volunteer, CoordinatorNational Wheelchair Service Network Project, PNG

What is a wheelchair?

Is it just a chair with wheels?Providing wheelchairs is not just about wheelchairs. It is about helping people living with disabilities to integrate into their society. People with disabilities need wheelchairs with instructions on how to look after them, and spare parts to keep them in working order. Many good wheelchairs are collecting dust in warehouses, waiting for people who need them.

As long as donors focus on wheelchairs and not on the end-user, people with disabilities will remain passive recipients, dependent on society’s resources.

Just giving out free wheelchairs is not the answer. There must be a system in place to ensure wheelchairs are of good quality and suitable for each person’s needs. But in a developing country it is difficult to find a range of wheelchairs that people can buy.

The end-user cannot afford to pay for his or her wheelchair.

People depend on the generosity of government agencies, development organizations and charities. Usually the end-user becomes an object of charity.

Let us not overlook the key player – the wheelchair user. Local self help services and advocacy organizations for people with disabilities should ask donors to promote a market for wheelchairs which will not only provide a large number of wheelchairs at a reasonable price but help to encourage local manufacturers who can also provide employment opportunities for people with disabilities.Charity is good if it assists people to become independent rather than dependent.

Mobile Eye and Ear check-ups

For more information about Wheelchairs contact: National Wheelchair Service Network Project PO BOX 1061 Madang, Ph: 852 1924/26 Fx: 852 1926

By Augustine KoromaCallan Services Unit, PNG

Checking elementary and lower primary school children’s ears, eyes and hearing in National Capital District is a ministry that Mr Michael Kanema and Mr Thomas Toropa, staff of Callan Services for Disabled Persons love doing.

Michael and Thomas were screening Waigani Elementary School Children’s ears and Eyes in August. The screening program began last year, 2008 under a country wide program covering 13 provinces of Papua New Guinea with the much needed financial support from Light for the World Austria and European Union.

The Southern Regional Coordinator Mr Steven Kamga stressed that services provided by his two staff is vital and urged all schools in the National Capital District to fully utilize

the services.Some of the schools in NCD that took necessary action for their children after being checked were Waigani, Ward Strip, Evahdana, Gereru, St Ann’s Primary School and Maximise Private School.

Mr Kamga said that more than 3000 children were screened and those with problems were treated at the screening site.

Those that needed further diagnostic testing were referred to the nearest service locations within the city.

Mr Kamga by extends his words of appreciation to all city schools that allowed the two staff to screen the students.

He invites any schools that would like their children’s ears and eyes screened to contact his two officers on mobile: 72405597. The service is free of charge. Children with good clean ears and eyes, hear and see well and learn well. CONGRATULATIONS THOMAS and MICHAEL for your great service………

Thomas Toropa examining Joyce Duma – Class 2F of Waigani Elementary

Beyond Wheelchairs

The Network • 19 • 2009 5

Dame Carol Kidu’s Point of View

By Bonnie Abola and Ian Apeit

Access to Information, Communication and Technology is an advantage and a privilege in the twenty-first century where almost everything is technologically driven. We are living in a digitalized world.

In PNG internet access and usage of other digitalized devices is growing. According to BMobile, about 160 000 people are using mobile phones and 115 000 use the internet- an increase by 14.8% since 2000,to Internet World States– Usage and Population Statistics website reports.

PWDs have been among the minority group who live in poverty. Provision of internet using wireless technologies like smart phones and netbooks increases avenues for PWDs. For example, sign language over the Internet using mobile phones enhances access to educational resources, creates networks with other PWDs around the world, creates opportunities for employment, and room for awareness towards understanding the world beyond their borders, even those biases that pervert their growth.

New devices are compact and can create new barriers to access. For example, tiny keyboards are difficult to see and manipulate. Touch screens can offer advantages to some people but become barriers to others; and software such as those that enable blind people to use touch screens should be made accessible.

Internet accessibility for PWDs refers to creating products right from start that considers the needs of the whole community-including PWDs.

The principles of inclusive or universal design should apply to internet products and services.

Areas in mobility, vision, hearing, communication (speech) would enable internet accessibility.For mobility, access to

Picture: Rakesh Chand, from the United Blind Persons of Fiji during his presentation using the JAWS program at the PacINET conference in Port Moresby on the 09th of September 2009.

communications and services through internet accessibility makes it easier than traveling to use the service. Internet banking, government services, health and medical information for examples, can be communicated using chat rooms, blogs and social networking applications such as Twitter or Facebook.

Web accessibility should be ensured for visually impaired. Sites need to make sure pages are designed to work well with screen reading programs that convert text to speech. The pages coding should include tags to describe elements and other features to improve accesibility.

For sign language users, signers should be provided. Signers present information in sign language to those with hearing impairment. Signing can be delivered as a video insert in a site as an alternative to reading text. It can be inserted into existing videos to provide interpretation of spoken words.

Captions and subtitles for hearing impaired. Captions can be added to videos which can present audio

information as text. Subtitles translate from a foreign language while captions are in the same language.

We can all make internet accessibility happen. The governments should include accessibility in ICT policy and make appropriate regulation and legislation.

The service providers must offer accessible products and services. NGOs should include accessibility in activities. We need to unite to provide internet accessibility in PNG.

The Capacity Building for Internet Accessibility Policy Development workshop held in Port Moresby in September, tried to look at these challenges.

NDRAC, Chesire Homes, Pacific Disability Forum and United Blind Persons Union of Fiji participated in this workshop.

Strategies which would ensure PWDs participation in the Internet economy was also explored. There is anticipation that accessible Internet will provide opportunities for employment, education, recreational pursuits to pwds and enable them to participate as equal partners in development.

Internet Accessibility for PWDs

Honorable Minister for Community Development, Dame Carol Kidu is a regular columnist for The Network.

This quarter though, we regrettably advise that due to her being pre-occupied with her numerous Ministerial duties she has not contributed to this months issue.

We apologise to all her followers and assure all readers that we will do our best to receive her column in our next edition of The Network, which will be out in December, 2009.

Smart phone is a mobile phone that of-fers advanced capabilities, often with PC-like functionality. Netbooks (mini notebooks) and they are a category of small, light and inexpensive laptop computers. A blog is a type of website, usually main-tained by an individual with regular entries of commentary, descriptions of events, or other material such as graphics or video. Twitter is a free social networking and mi-cro-blogging service that enables its users to send and read messages known as tweets.Facebook is a social networking website. Users can add friends, send messages,update their personal profiles

6 The Network • 19 • 2009

Disability Awareness Materials

Through our recently designed t-shirts and posters with catchy slogans, we wish to raise disability awareness. At National DRAC you will not only find disability awareness materials for persons with disabilities and people who

wish to advocate for disability, but for everyone who supports disability rights!

Promote disability rights by ordering one of these t-shirts!The T-shirts (selection between collar and round neck) cost K35.00 (excl. registered postage).Colours available: White shirt/blue and orange print or Black Shirt/white and orange print.Sizes available: Medium, Large and Extra Large

Disability Awareness Posters Available!

In our campaign to raise awareness for disability rights we have designed 2 posters (A2 size) with pow-erful slogans! We want to distribute these posters to the wider communities in PNG; ensuring posters are

available at community level, churches, health centres, hospitals, public spaces, schools, government offices and individuals.Currently we have the following posters in stock: Price per Poster

K 10 (excl. registered postage)

Join us in our Advocacy Campaign and order a Poster! Item 2: “Mi Ken Wokim”

Item 1: “Bung Wantaim”

Bung Wantaim

For more information on the rights of persons living with disabilities contact: National Disability Resource & Advocacy Centre Divine Word University P.O. Box 483, Madang, PNG. Telephone: 8541892 Fax: (675) 8522812 Emaii: ndrac@dwu.ac.pg website: www.ndrac.org

Wok WantaimStap Wantaim

Noken lukluk long wanem kain bagarap ol gat, lukim wanem kain save na wok ol ken wokim

For more information on the rights of people with disabilities contact:

National Disability Resource & Advocacy CentreDivine Word University P.O. Box 483, Madang, Papua New Guinea Telephone: (675) 8541892 Fax: (675) 8522812Email: ndrac@dwu.ac.pg Website: www.ndrac.org

"Mi ken wokim wan kain samting olsem yu"

You can choose between the following slogans:

don’t DIS my ABILITY Nothing About us Without us!RECOGNIZE my disabilities EMPHASIZE my PossibilitiesI stand for Disability Rights (accessibility, safety, community acceptance, in dependent living and quality of life, etc)

Hello We Are...

The Network • 19 • 2009 7

knowledge in NOPS staffs leading to improved technology and quality of assistive devices.Increased range of services •to cover different types of impairments.A substantial increase in the •number of devices produced, including the development of strong partnerships with various organizations for wheelchair provision.Developed innovative solution to •take services into the community through manufacturing and fitting camps set up in rural areas, the support of Community Based rehabilitation groups.Increased involvement of NOPS •in national debate and policy-making.Success in securing external •funding and technical expertise.

These changes have been stimulated by increased numbers of people demanding services, higher levels of funding by the Health department and improvements in management. The communication, publicity and training of staff have also been improved. In spite of its successes, NOPS has also experienced a range of challenges. It needs to:

Reach out to more rural •PWDs and create service centers within traveling distance of PWDs.Continue to improve and •maintain the quality and quantity of assistive devices.Continue to maintain its •profile and influence with decision-makers.

Improve its management and •administrative systems.Improve its information •sources.Create an improved •employment structure to support the development of the service.

NOPS MISSIONTo manufacture and provide appropriate Prosthetic, Orthotic & Mobility devices for persons with disability in PNG to enable them integrating into society.

NOPS VISIONNOPS wishes to contribute to the nation in which people with disabilities are able to access and choose the services they require to gain full inclusion in all aspects of family and community life with the respect and care that is their right.

In order to achieve this, NOPS will strive to develop into a well equipped service with highly trained staff able to work in partnership with PWDs to offer high specification, CBR & assistive devices. It will achieve this through the establishment of twenty provincial centers capable of bringing quality inclusive services within easy reach of PWDs. NOPS will work with any local or national partner sharing its principles to bring these improvements to the lives of PWDs.

The National Orthotic and Prosthetic Service is a part of the National Department for Health. Its primary function is to provide assistive devices that enable persons with disability to participate fully in all aspects of life.

NOPS works closely with all hospitals, NGOs’ affiliated to the National Board for Disabled Persons (NBDP). It also supports services developing the rehabilitation of people with disability in the community.

Since its inception in 1952 as A.L.F. (Artificial Limb Factory) and then change its name as NOPS in 1988. NOPS has experienced significant changes:

Establishment of five •prosthetic/orthotic/wheelchair manufacturing centers in Lae, Port Moresby, Mount Hagen, Rabaul and Aitape, and three additional service centers for wheelchair in Wewak, Madang & Goroka.Improvements in skills and •

Rajesh Nanda, Manager of NOPSPort Moresby General Hospital

A pair of Orthopedic Leg braces Demonstration of how a Prosthetic Arm is to be strapped on.

Working on a Prosthetic Leg in the NOPS Workshop.

For more information contact:NOPSPO BOX 807Waigani, NCDPH:325 2806/email:nops@online.net.pg

8 The Network • 19• 2009

News and Events MOROBE: MSERC & MDA JOIN FORCES TO ADVOCATE FOR “DIFFERENTLY ABLE PEOPLE” The Morobe Special Education Resource Centre (MSERC) and Morobe Disable Agency (MDA) hosted a celebrity Walkathon on 9 August 2009 to raise funds to purchase a 10 seater Landcruiser for MSERC and setup a database for MDA. Business houses and senior citizens of Morobe were invited by the Centre to participate in this walk. Sponsorship was secured with BSP and Coca Cola.

The first ever Deaf Olympics that was supposed to be held in Madang from 21-25th September has been postponed to next year, 2010.

According to Roselyn Willie, the Deaf Education Resource Teacher at the Creative Self Help Centre, in Madang said that the week long event has been postponed due to lack of funds.

Until the organizing committee of the event have come up with the fixed amount of how much each participating province will contribute the games has been deferred to an uncertain date next year.

On the same note, the Momase and Highlands Disability Games that was also set for 21-24th of September has been postponed to an unknown date, due to the Cholera out break in the Momase and Highlands region.

Samu Sasama, from the National Sports Institute confirmed this recently.

MADANG: Walking Together and Building Capacities with NGO PRO

A week long workshop was held at the Alexishafen, Madang.

The participants of this workshop were grateful they learned a lot of things from the donor and facilitating organisation-The HORIZONT3000’s NGO PRO. The workshop ran from 17th -21st August with its theme “STRONGIM WOKABAUT WANTAIM NGO PRO”. National Disability Resource Advocacy Center (NDRAC) was part of the workshop as NDRAC has become one of NGO PRO’s partner organisations since February 2009. We were successful in receiving funding in order to support National DRAC in human resources and sustain and continue our programmes and activities.

During the workshop we were given tools on how to develop safe skills which are essential to manage a NGO effectively. Besides that all partners could contribute their ideas on how to improve networking among NGO PRO partners in order to maintain a professional network of linking organisations. Actions were formulated ensuring “Wokabaut Wantaim NGO PRO” is strengthened.

NGO Pro workshop participants taking part in a group activity. Pic by NGO PRO

MOROBE: Morobe to hold seminar

Morobe PWDs are planning to host a three day seminar from Dec 1-3, 2009.

In conjunction with MPAC’s (Morobe Provincial Aids Council secretariat) they would like to bring to attention PWDs vulnerability to HIV/AIDS. They will also have PWD speakers in specialist areas to highlight their plight and bring to attention their specific obscurities. On the final day of the seminar the PWDs will allow for responses from the National and Provincial Government.

Talent Show which will feature the Braille Boys Band of Mt Sion, EHP.

Loujaya Toni, Morobe Community Representaive of NBDP singing with Petrus Kup of the Braille Boys Band

MADANG, KAINANTU: Deaf Olympics and Momase Highlands Disabilty Games deferred.

The Network • 19 • 2009 9

Madang Resort Hotel and Kalibobo Village offer the ideal getaway for your next meeting or conference. Superb facilities including a full range of accommodation to suit all levels of comfort from

standard rooms to presidential suites, and situated in spacious tropical landscaped gardens. And when the work is done you and your colleagues can indulge in a range of activities such as

diving, snorkelling, sightseeing tours, kayaking, tennis, swimming, canoe trips and fishing.

Madang Resort Hotel and Kalibobo Village… More than a hotel, it’s a total experience!

For further info call 852 2655 today. Email: mrhmanager@mtspng.com Web: www.mtspng.com

News and Letters

Reader’s Reactions

Dear Ms Editor,

First up, congratulations!!! Kudos to you! Yep, your articles were well-researched, very informative and you kept things light and enjoyable too.

Good one! Layout is attractive and varied for each page, which is good.

Dylan PennielNGO ProMadang

MADANG: DWU celebrates World Physiotherapy Day

“Keep Moving” was the theme for this years World Physiotherapy Day.

Staff and students of the Physiotherapy Department of Divine Word University commemorated the day by inviting fellow staff and students to join in the open air exercise session on the school grounds.

The day marks the unity and solidarity of the physical therapy community from 101 countries around the world. It is an opportunity to recognize the work that physical therapists do for their patients and community. WCPT aims to support member organizations in their efforts to promote the profession and to advance their clinical expertise, using World Physical Therapy Day as a focus.

Physiotherapy Lecturer, Jolanda Van Lieshout said that it was the first of its kind and hoped that it would be a tradition every year.

Great Issue on Mental Health!

I was forwarded this article by my friends and ejoyed it very much as it contained alot about disability issues that are not well known to most people.

I’m more informed and will keep an open mind about disability issues in the country.

Please include me in your mailing list and keep up the good work.

Trevor UberawaCity MissionLae

Hello,

Thank you so much for the edition.

It’s so wonderful and I am so glad that you really advocate for the great need for the recognition of mental health.

Thank you so much and will always update you on our YMH activities, Thank you.

Michael Kawak, Psychologist with FPCD

Staff and students of the Physiotherapy Depart-ment exercising on World Physiotherapy Day at DWU Campus.

The Network • 19 • 2009 11

Personal Profile

10 The Network • 19 • 2009

Her smile is enough make you forget that she is sitting in a wheel chair!From the moment we arrived at her home; a few minutes drive out of the main town, Eki Namungo could not stop grinning as we took turns to be introduced to her. We found out that Eki is an inspiration to her family, community and village of Biliau in semi-urban Madang. Eki became ill with polio at the age of 9.

Age: 54 years old Current Residence: Biliau Mainland Province: Madang Occupation: Unemployed Marital Status: Single Cause of Disability: Polio

Eki Namungo

Question 1: Can you tell us about a typical day?My day is spent mostly at home. If there is work like laundry to do, I make sure I wash it and my nieces or sisters help me by hanging them up to dry. In the afternoon I help to cook dinner by peeling and cleaning the vegetables. Sometimes in the afternoon I let the young girls push me around the village. Then in the late evening I work on making my bilums.

Question 2: What are you most proud of having done?I love making ‘bilums’ (traditional styled bags) and sewing blouses, and I have made several colorful ‘bilums’ and blouses. But I don’t sell them I give them to my family. I am also proud of my family and the community that I live in because they are very supportive of me and have never made me feel down about myself. I’m also proud that I have lots of friends and I can also swim.

Question 3: What difficulties have you faced as a person with disabilities?I haven’t faced a lot of difficulties, though there are times when I feel that I could do a lot more for my family, for example I feel I can do a little selling of vegetables so that I can contribute financially towards my family’s living as well as buy some nice things for our home. But because I live at home and am surrounded by my loving and caring family I haven’t really faced difficulties as a person with a disability accept that I can’t move around like any normal person.

Question 4: What’s your advice to persons with disabilities on how difficulties can be overcome?I encourage and urge all PWD’s who are at home, like me, to open up and not be afraid to be helped by volunteers and carers that come around to their area. Their help will encourage you to be a better person in life. It has done alot for me. Just because they want to help you it does’nt mean you seem helpless or useless, it beacuse they see alot of potential in you.

Question 5: What things would you like to change in PNG to remove the barriers disabled people are facing?I’ve heard a lot about people in the community and elsewhere in the country who ridicule and under estimate PWD’s. They think that we cannot contribute effectively or live normal productive lives like any one else. People who think nothing of us should realize that we too have equal rights and responsibilities as any normal person. I encourage everyone not to look at our disability but look and learn from what we are capable of doing for ourselves and our families. Just because I can’t walk, doesn’t mean I can’t contribute positively towards my family’s livelihood.

Question 6: What is your motto in life?“As long as there is a God nothing is impossible!” I believe that I was born for a purpose, even if I am in wheelchair. God has blessed me with a life and the love of my family, without him and his word I can never be as happy as I am today. To get by in life, I make sure that I’m reminded of Gods love for me and I see that all around me; in the faces of my family, in the new day that dawns and the beautiful place that I live in.

easier to get political backing for the project. By this time, there were already two national physiotherapists Michael Wilson and Hugh Saweni. They were trained overseas.

The school started in 2002 as part of the Divine Word University Health Sciences Faculty. The first intake of students was in 2003 and they were trained by VSO volunteers. I had the privilege of being one of the pioneer graduates of this program.

With the help of DWU, National Health Dept, Callan Services, VSO, Cordaid, CBMI and other organizations such as NDRAC, physiotherapy is starting to

Cassandra during a practical lesson with her students.

and will progress into playing a major role in disability in PNG. I think as more graduates enter the workforce physiotherapy will have a bigger and better effect on PNG.

The future of physiotherapy in PNGlooks very bright. This is due to the fact that more awareness and advocating being done by organizations like the NDRAC, National Board for Disability with Persons and also major hospitals are becoming more supportive of the work done by physiotherapists. This helps to reinforce the importance of physiotherapy to the population.

Another factor is that avenues for employment are being created not only by the government through the health department but also through private organizations and sporting franchises. Therefore there is a possibility in the future for specialization. The other factor, one which I am quite proud of being associated with is the quality training.

The Network • 19 • 2009 11

PHYSIO- THERAPY PHYSIOTHERAPY

Cassandra Akiro; “I want to make sure that my students are given the best....”

At first I did not know what physiotherapy was. I remember my friend Cindy encouraging me to apply for the course but I didn’t know what it was. When I had the DWU application form in front of me, I looked it up in the dictionary. As I read t h e definition, I thought well my name Cassandra means ‘helper of mankind’ so maybe is my calling. I can help many people through this profession. That was the beginning of my life as a physiotherapist.

Most Papua New Guineans think physiotherapy is a new profession in PNG. But it has been in PNG since 1957; the clinics were attached to main hospitals and run by expatriate physiotherapists.

In 1989, a study was undertaken by WHO into disability. One of the results of this study was that the prevalence of disability in developing countries was at 10% of the population, 25% of this population suffered adverse affects of disability and 80% of them lived in rural or remote areas where they had no access to proper healthcare and rehabilitation services. Hence a recommendation was made to the health department that a school for rehabilitation workers be established.

After many meetings with stakeholders it was decided that instead of Community Based Rehabilitation the country would train physiotherapists. The stakeholders felt that compared to community based rehabilitation, physiotherapy had a more clearly defined career path and it would be

Our future physiotherapists are getting through Divine Word University. We are now affiliated with the James Cook University School of physiotherapy in Townsville, this allows room for our students to further their studies and also participate in any joint research activities conducted by the universities.

Also the physiotherapy department has just received state of the art equipment which will be used to set up a clinic in the University where our departmental staff can keep up with latest adaptations in treatment and the students will be able to get practical knowledge of different physiotherapy equipment and their uses.

Another factor that would make thefuture of physiotherapy in PNG more sustainable would be the establishment of a physiotherapy association.

All these bright lights sparkling were in fluently in my decision to be a tutor. The two underlying reasons were firstly to advance my qualifications and the other but more important reason was to help create sustainability for physiotherapy in PNG. The physiotherapy school here at Divine Word University is functioning because of overseas volunteers and contractors. If Papua New Guineans do not take ownership and leadership than how can we guarantee this service for our people in the future?

Although at times I find my job challenging and I get disillusioned, I try my best to concentrate on the output of my work, the students. These young people will go out and serve and make differences in the lives our people. I want to make sure they are given the best education so that later they will provide a quality service and maybe some day some one will say to them, thank you my life is better because of you!

I think that’s the greatest reward one could ever want.

12 The Network • 19 • 2009

It all pays off....

By Ian N. Apeit-NDRAC

“It was a self-trial, a matter of trial, yet it pays off” were the words of a first year Information Technology student of Divine Word University in Madang with muscular dystrophy.

The 20 year old Emmanuel Arua is from Central province and he was a successful recipient of a Christoffel Blind Mission’s (CBM) scholarship. The scholarship package covers four years tuition, study items and disability needs. Emmanuel is a wheelchair-user because of the muscular dystrophy-a situation where one encounters progressive degeneration of a body tissue such as muscles. They are caused by inadequate nourishment of the affected part, as a result of some un-known cause where, Emmanuel was able to encounter while he was in his sixth grade. Since then Emmanuel was assisted by relatives up until now. He never quit schooling or lost interest in education and he is now a successful recipient of the CBM sponsorship.

Living a life with a disability can be both challenging and rewarding. Some disabled people take it easily as they can cope in life despite hurdles while others faced with many difficulties. “I was tired, but I didn’t give up”

I take into account my family obligations towards me. I owe them so I studied harder in spite of my disability”, Emmanuel said.

Winning the scholarship for him pays off his Family struggles.

It further gives him the drive to focus and concentrate on his studies than worrying about the fee obligations caused to parents. It relinquishes the pressure of parents, he said.

Emmanuel said he got this privilege by filling in the application he saw inthe Post Courier while waiting for his fer after the grade 12 examinations at the Jubilee Secondary School.

Receiving that award, he would like to personally and physically thank the CBM officers if opportunity arises.

Also, Emanuel calls on every individual to cultivate the habit of caring. “Individuals need to change mentality and start to care”.

He calls on the government of PNG To establish a government body which can support such work as CBM is doing where it can assist students or pwds directly in the country with their needs. To other pwds, he said “Do not lose hope, do not despair-believe in yourselves. Do not wait-be self-supporting!”

“Do not lose hope, do not de-spair-believe in yourselves. Do not wait-be self-supporting!”-Young and aspiring Emmanuel Arua.

Picture taken during the Informa-tion Systems Symposium at Divine Word University in September,2009

The Network • 19 • 2009 13

Doctor on WheelsBy Marleen Nelisse

Since May of this year the Angau Memorial Hospital in Lae has a new acquisition on the recently reopened cancer unit in the person of Dr. John Niblett. He and his wife Andrea decided to commit themselves for at least 6 months to reactivate radiotherapy treatment for patients diagnosed with cancer.

Radiotherapy treatments stopped in 1998 because the machine (Cobalt 60) wore out and there were no radiotherapy specialist available.

Dr Niblett was one of the pioneers on cancer treatment in Lae Memorial Hospital several years ago and has returned to revive its purpose again.

The reactivation of radiotherapy treatment at the Angau Memorial Hospital in Lae, has coincided with the increase of referrals for cervical and mouth cancer. Dr. John Niblett says mouth cancer is on the rise due to betelnut chewing. Studies revealed that the type of lime used (caustic lime), accompanied by smoking, were factors contributing to the increase of mouth cancer.

Born in 1939 in a village close to Birmingham in the United Kingdom, Dr. Niblett contracted polio at the age of 11. His father who was very supportive when he was diagnosed with the disease took him three times a week to receive Physiotherapy.

In the beginning he used crutches under supervision of his Physiotherapist. He then changed the crutches for a walking stick which he used for over two years.

He improved tremondously at the age of 15, after strong perseverance in keeping to his exercise regime.

However, at the age of 13 he got into an accident while speeding in his wheelchair. In those days the wheelchairs were not that reliable; they had big wheels and were not very navigatable.

Then when he was 16 years old,

the economic crisis hit his father’s business hard. His father could not afford to pay for his school fees leaving no other option but to live with his aunties and work part time as a trainee an Industrial Chemist with Gazpol. He then moved on to work HP Sauces a year later. Till date he is still loyal to his former employer, since he will buy its popular brown sauce wherever he is in the world! When he was not working, he studied to get his A-certificate in order to be accepted at university.

Eventually,he got into Charing Cross Medical School in London to do his medical studies specialising in Gyneacology.

After graduating and working as a gyneacolgist for several years he was encouraged by a doctor in radiotherapy diagnostics to get his qualifications in radiotherapy in which he did.

Then in 1973 he applied for a consultancy job with the Australian government in PNG, not really knowing much about PNG,it was quite a culture shock when he arrived here. Whilst working here he discovered that a lot of expatriates had skin cancer, due to the strong sun. This drove him to be the first cancer specialist in PNG.

One of his patients, which he still remembers very well was a girl with a huge tumor in her thigh bone.

According to Dr. Niblett she is the longest survivor of cancer in the country.

The girl, Rose Peter, had her leg amputated and is a known Woman with Disability in the Simbu Province.

Dr. Niblett is also known by many as as “Doctor lek bagarap” or “Doctor bilong pawa”. The latter refers to the radiotherapy treatment that he gives to cancer patients.

Even though his legs are more or less “bagarap” and he is wheelchair dependent, he does not identify himself as a PWD.

He would rather live a normal life than be referred to as a PWD.

Two years ago he was still able to walk with two walking canes, but he ruptured one of his triceps and now relies on the wheelchair to move around in his work.

He admits he is not a purposeful person in regards to activity and exercises, even though there is a Physiotherapy department at Angau Hospital.

Because of the presence of Dr. Niblett many things have been made accessible in Lae for him and other people in wheelchairs. The Lae International Hotel made a ramp so he can access his room, they also installed a disability awareness sign at the parking lot, reserving his parking space.

PICTURE: Dr John Niblett, “Dokta Lek Bagarap” and wife Andrea at their ho-tel room in Lae. Dr Niblett is also known as “Dokta bilong Pawa” a name he acquired after many years working in PNG as a Radia-tion Oncologist.

14 The Network • 19 • 2009

A Single VisionBy Augustine KoromaCallan Services National Unit – Papua New Guinea

In July 2009 I drove to Wambisa with an outreach team of Callan Services for Disabled Persons to discuss deaf unit establishment at a local primary school. On our arrival we were welcomed by the community and we walked into the meeting arena. Among the many adults and children that I met that day in the village,13 year old Dorothy has brought back memories of a journey that I took to the same village 10 years ago.

In 1999 I went to Wambisa on a rural outreach to conduct ear and eye screening. Dorothy was 3 years old when I first met her. Her father brought her to me for her left eye to be checked. Physical examination of her eye confirms that she had physical trauma in her left eye. She could not close her eye lids, and it was always watery and very painful. Life or death was the situation if nothing was done to releive her eye. At the end of my screening I discussed with Dorothy’s parents to

bring her to Boram General Hospital Wewak to see the Eye Doctor. The parents agreed and came to Wewak a week after I left. On consultation with Dr. Aulong,the eye doctor he advised that Dorothy must have her left eye removed or else it would cause serious complications. The parents signed necessary forms and a few days later her left eye was removed successfully. Dorothy and her parents spent another week with my family before they left for home,

Wambisa. After 10 years Dorothy stood in front of me with her most beautiful smile and presented me with a Wasera bilum ( traditional bag) in appreciation for saving her life. Dorothy is now doing year seven at Wambisa Primary School and has a long future ahead.

Like any other child she could become anybody, a pilot, doctor, teacher or any profession of her dream. I wish her every success in

her education and future life but I have a dream for her and that one day she would become an EYE DOCTOR and do my cataract when that time comes.The long walk into Wambisa in 1999 has been much fruitful and the energy of my ministry comes from making a little DIFFERENCE in People’s life…

Happy and healthy Dorothy standing outside her village, Wambisa in the East Sepik Province.

By Rafael Caballero, VSO Physiotherapist, Mt. Hagen General Hospital

Wheelchair riders in Hagen such as David Wegan (not his real name) can now easily visit the workshop in the hospital building for wheelchair repair and artificial limbs.

The lane spanning the distance from Mt. Hagen General Hospital to the doorstep of the said workshop and the VCT clinic has been paved and made smooth; thanks to funding and manpower supplied by the National Wheelchair Service Network and Mt. Hagen General Hospital. The National Wheelchair Service Network is a collaboration of the Voluntary Service Overseas and other stakeholders.

Not too long ago, David’s carers, with help from bystanders, had to bodily lift him and his wheelchair to cross the pathway because the rough, uneven ground resisted the tires. It was an ordeal every time he had to see someone in the workshop about his artificial limb. Luckily, his physiotherapists at the hospital noticed his hardship and set out to alert the concerned agencies. Now David can get to the workshop safely by himself. The new track still needs a handrail, he muses, but it’s a start.

David’s wheelchair had earlier given him a new lease on life, but much of Hagen remains unreachable—many of the city’s shops and offices have no ramps, curbs, and doorways wide enough to let him through. David looks forward to seeing meaningful improvement in the future to truly relish his hometown.

Paving the way for Wheelchairs

The Network • 19 • 2009 15

Mosquito nets availableIf your organisation is working with vulnerable communities in PNG, you can apply for free mosquito nets at National DRAC to distribute among the community. Long Lasting Insecticidal Nets (LLINs) are available in the sizes:- family- doubleThe mosquito nets are purchased through Rotary against Malaria. For more information, please contact:National DRACPO Box 483, MadangTel: 854 1845

HIV & Aids and Disability in PNG By: Ian N. ApeitProject Officer, NDRAC

During the 34th Independence Celebration Anniversary, I pondered on the Stigma, denial exclusion and discrimination that continues to exist and remains a problem for persons with disabilities, persons living with HIV and AIDS and those persons with disabilities and who also have HIV or AIDS in the country.

HIV and AIDS is perhaps one of the most stigmatized medical conditions in the world, the other being disability. In PNG, no research has been carried out on the stigma associated with these two medical conditions. A report produced by the South African National AIDS Council (May 2008) on HIV, AIDS and Disability concludes that disabled people who become HIV positive are “doubly stigmatized, particularly within the “charity model” framework”.

This model reflects a tendency for other people to make decisions that affect the lives of disabled people, which gives them a sense of powerlessness and hopelessness.

The report states that disabled people are raised to believe they are less “human” due to their disabilities. They are also subjected to ridicule all their lives, to an extent where they start believing what society says. This response to how society treats them is internalized, and as a result they often begin to react as helpless objects of pity in need of care and support, not able to do anything for themselves.Even though HIV and AIDS and

Disability are seen as medical issues, there are loopholes in the current health systems and health services provision in Papua New Guinea barring and marginalizing disability rights issues. For instance the National HIV and AIDS Plan 2006–2011 does not include HIV and AIDS and disability. Article 25 of the Convention on the Rights of Persons with Disabilities states: “State Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that is gender-sensitive, including health-related rehabilitation”. Even though the article speaks for the rights to enjoy the highest attainable standard of health without discrimination, PNG health services seem to be inaccessible to by all.

The structural or facility designs and the discriminatory (judgmental) attitudes of health workers do not permit. Physical access and attitudes of some health workers are a hindrance for disabled people seeking HIV service such as voluntary counseling and treatment. There have been some testimonies on such attitudes of health workers.

While policy and programmatic responses took on both HIV and AIDS issues, none speaks of the relationship or of the intervention

between HIV, AIDS and disability. The biggest weakness of disability, is the non-inclusion of HIV and AIDS at the policy and programme level. The sector needs to develop ambitious targets for HIV prevention, AIDS treatment, care and support after evaluating current National HIV and AIDS Plan 2006–2011. Further, the status of HIV and AIDS among disabled people is un-accounted for as revealed in the UNGASS Country Progress Report (January 31,2008). There is need for HIV prevalence data collection among PWDs.

Given these gaps, National Disability Resources and Advocacy Center (NDRAC) started lobbying with Madang Provincial AIDS Committee for disability inclusion in its HIV and AIDS programmes. On August 4, 2009 NDRAC participated at the Madang Provincial Aids Committee stakeholders’ forum held at Madang Resort. This was the first step for NDRAC in its lobby campaign, advocating for people with disabilities to be included in HIV & AIDS policies and programmes in the country rather than each operating in isolation.

Advertise in The Network!Via The Network you can advertise your business, services, products or any other information.The Network is widely received; currently we have an estimated readership of over 2000 people and organisations in PNG and abroad....and our recipients list is growing with every issue!If you have any information to advertise targeting the entire society, use The Network! With your advertisement you will directly support disability advocating activities. The flat rate for 1/4 page is K 150.Please contact The Network for more information.

The Network started in 2004, is a quartely magazine for all people involved and interested in the disability sector in Papua New Guinea.

The aims are to empower, share views and spread accurate and inspiring information about dis-ability.

This edition has over 2000 recip-ients and an estimate readership of 3000.

Among the recipients are individ-uals wiht and without disabilities, government, media, business houses, donor agencies, church groups, NGO’s wihtin PNG as wll as overseas in the Pacific, Eu-rope, Asia, America and Africa.

The production of The Network is supported in different ways by: DWU, Creative Self Help Centre, VSO, Callan Services and Government of PNG.

Editiorial and design team: Bonnie Abola, Ian Apeit and Marleen NelissePrinting: Divine Word University

Individual views expressed are necessarily those of The Net-work.

The Network encourages the reproduction of articles for non-profit uses. Please clearly credit as the source and send a copy.

The editor will try to publish all material received but reserves the right of refusal and to edit stories for space and clarity, as appropriate.

When you send original draw-ings, pictures, etc. and you would like them returned, please mention this in the letter and give your return address.

• Like to receive The Network• Got editorial material?• Change of address?• Wish to make donation?

Please contact Marleen NelisseNational DRACDivine Word UniversityPO Box 483Madang, Madang ProvincePapua New GuineaPhone: 854 1892 Fax: 852 2812E-mail: thenetwork@dwu.ac.pg

Bank details:ANZ Bank, Madang BranchBank account number: 1248 8197

The Network wants to include articles from all over the country and to have great involvement from person with disabiliteis. Local knowledge of what is happening on disability issues is easier to access through people who are living in that area. So we have established a promotors network team who are constantly sending us information. Articles and information presented in this issue is the product of their effort.

We have promotors in Mt. Hagen, Goroka, Lae, Madang, Alotau, Popondetta, Ki-unga, Port Moresby, Aitape, Wewak, Bougainville and Rabaul. Now we have David Iriap in Markam, Nick Mark at Tabubil, Finley Tuoreke in Wewak, Lawrence Kaekae in Central Province and Warian Wafie in Gulf Province.The editor is reguarly in contact with all promotors and gives guidances if needed. Our promotors are looking for inspiring stories and relevant information and they are encouraging other organisations and persons in their region to submit materials to share with the National Disability Magazine.

Is there no promotor in your area above? Do you want to be The Network promo-tor in your area? Please contact the editor for more information on the duties and terms of reference.

AcknowledgementsWe thank all who supported and contributed to the 19th edition of The Network. Our special acknowledgement goes to the Divine Word University and the Creative Self Help Centre in Madang for their continuous and much appreciated support.

We also thank all who sent materials which unfortunately could not be published in this edition.

The next edition will be published in December 2009. Next Do not forget to send in your articles,news and views for the next edition, before December 2009!

16 The Network • 19• 2009