The newsletter of the Motivation Charitable Trust Issue 34 February 2009

Sarah Sheldon Programme Support

I am delighted to introduce this edition of Motif, which highlights the launch of the World Health Organization (WHO) Guidelines on the provision of Manual Wheelchairs in Less Resourced Settings. I joined Motivation as a designer 13 years ago, initially working on a project introducing appropriate wheelchair production in Nicaragua. Over the years I have witnessed Motivation’s approach change as we continually seek ways to maximise the impact of our work, now with more emphasis on training, advocacy and collaboration with other international organisations. 2008 was a particularly significant year for wheelchair users around the world with the launch of the WHO Guidelines in August. Motivation was honoured to be involved in the writing of the Guidelines from their inception, and in 2009 we look forward to being able to use them as a powerful tool in our work to advocate for appropriate wheelchair provision. I hope you enjoy reading about the Guidelines in this edition of Motif.

Landmark Wheelchair Guidelines Published

On 25th August 2008 the World Health Organization (WHO), the US Agency for International Development, the International Society for Prosthetics and Orthotics and Disabled Peoples’ International launched the Guidelines on the provision of Manual Wheelchairs in Less Resourced Settings; a landmark for wheelchair users around the world. The Guidelines are the result of a three year collaboration amongst a number of organisations involved in wheelchair provision, in which Motivation played a key role. They were developed through consultations with a wide range of stakeholders and wheelchair experts as a response to the need to develop functioning systems of wheelchair provision in developing countries. Motivation will now be able to use the Guidelines as a tool to advocate for the development of national policies and training opportunities in the design, production and supply of wheelchairs as essential next steps to assist countries develop local wheelchair provision. The Guidelines show how wheelchair provision can be approached in a responsible manner, taking into consideration the wheelchair user’s needs and environmental conditions, whilst being maintainable and sustainable in the country of use. They also recognise wheelchairs as ‘a means by which disabled people can access their human rights and achieve inclusion and equal participation.’ The specific aims of the Guidelines are to promote the development of national standards for wheelchair provision increase collaboration among those involved in wheelchair provision training programmes coordinate efforts in wheelchair service delivery among various stakeholders increase the quality and range of wheelchair designs and types available increase knowledge of personal healthcare and wheelchair maintenance

David Constantine (Motivation), Venus Ilagan (Disabled Peoples’ International), Anne Hawker (Rehabilitation International), Alana Officer (World Health Organization) promote greater user participation in wheelchair design, selection and provision. By focusing on four main areas; Design & Production, Service Delivery, Training and Policy & Planning, the Guidelines provide coherent advice for best practice in service delivery. The Guidelines are a powerful tool to argue for the right to appropriate mobility equipment provision, as despite thousands of wheelchairs being distributed in the developing world every year, no consensus previously existed to promote the needs of the users and to define the obligations and responsibilities of wheelchair providers. It is hard to overstate the importance of these Guidelines as they represent a milestone for wheelchair users in developing countries, for the first time having their needs recognised and promoted in such an authoritative publication. For the past 17 years Motivation has been promoting the principles now endorsed in the Guidelines, and we were delighted to be involved in their compilation. We are confident they will be widely adopted, leading to an increased quality of life for many wheelchair users.

Designed to Guide

Worldwide, the rights of disabled people are often denied, resulting in increasing marginalisation from society. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and its Optional Protocol were adopted by the United Nations General Assembly in December 2006. The Convention aims to ensure that disabled people enjoy human rights on an equal basis with others, and makes specific reference to mobility as a human right. The Guidelines on the provision of Manual Wheelchairs in Less Resourced Settings therefore directly address the convention and offer a tool to guide appropriate wheelchair provision and ensure mobility for all people with mobility disabilities. The Guidelines also establish the inherent link between mobility and the realisation of wider human rights: “Providing wheelchairs that that are fit for the purpose not only enhances mobility but begins a process of opening up a world of education, work and social life.” The Guidelines uphold and promote the principles of the UNCRPD and are an important guide towards the realisation of the rights of disabled people worldwide.

The Guidelines in Practice: case study With the support of Motivation, partners in Tanzania and Malawi held National Wheelchair Stakeholders’ Conferences in November 2008. Here we look at the conference in Tanzania, which was the first of its kind in this country. The WHO Guidelines provided the platform for the conference, which aimed to address the need for appropriate wheelchair provision and the frequent isolation experienced by disabled people due to a lack of appropriate wheelchairs. Using the Guidelines as a basis, the conference recognised that the provision of appropriate wheelchairs is the first step in the process of empowering wheelchair users for meaningful participation in education, work and social life. This is particularly relevant as the Tanzanian government has signed the UNCRPD, which aims to ensure that disabled

people enjoy human rights on an equal basis with others. The conference provided an opportunity for information sharing between stakeholders and planning on how to work together to create a national strategy for wheelchair provision in Tanzania. The conference was highly successful, gaining commitments from a variety of stakeholders, significantly the Ministry of Health & Social Welfare and WHO. The WHO Guidelines provided an important platform for the conference, which meant that all stakeholders had a common reference point and goal, despite their varied experiences and approaches; the guidelines are key to unifying approaches to wheelchair provision in Tanzania.

The National Wheelchair Stakeholders’ Conference in Tanzania

Changing Lives

Godlisten and his peer trainer Faustina

Godlisten is 20 years old. He has spina bifida and lives in Tanzania. Three years ago Godlisten joined the Kilimanjaro Association for the Spinally Injured (KASI) and received a three wheeler wheelchair from the workshop at the Kilimanjaro Christian Medical Centre (KCMC) Hospital in Moshi. Prior to this, he had been using a donated four wheeler wheelchair. Godlisten says he prefers his new wheelchair because it is more comfortable and he can travel much faster along the bumpy roads by his house. Before attending the Peer Group Training (PGT) course in Tanzania Godlisten was frustrated because he lives in a very rural isolated village and knew no-one who could relate to his situation. The PGT course was the first time he had spent the night away from home, so Godlisten was provided with a ‘buddy’ to give him support during the course. As a result of this he gained confidence, and has learnt to understand himself and how to take care of himself. Godlisten also learnt to go up and down ramps and his parents have now installed a ramp in their home to make it accessible for Godlisten. Now he goes into town with his friends on public transport. He says that the course “opened his eyes” to what he could do. Faustina, his peer trainer said “He’ll be someone somewhere, I’m proud of him.”

Sunil using his new wheelchair

Sunil: Update. In our last newsletter (Motif 33, September 2008) we introduced you to Sunil who lives in Beni, Nepal. Two years ago Sunil sustained a spinal injury and was no longer able to walk. With limited mobility, he was unable to leave his home to attend school. Last summer Sunil was introduced to Motivation through his friends Jane and Dennis from Australia. Sunil was assessed at the Green Pastures Hospital and Rehabilitation Centre in Pokhara and was prescribed and fitted with his own Worldmade Rough Terrain wheelchair. Sunil is now mobile and adapting to his new life.

Maria runs her own shop

Maria Mushi lives in Tanzania. She has a spinal cord injury and is an active member of the Kilimanjaro Association of the Spinally Injured Women’s Sub-Committee (KASIWOC). Maria has a locally made appropriate wheelchair, which she got from the wheelchair workshop at the KCMC Hospital in Moshi. Maria says that the locally made chair is appropriate and comfortable for her to use. Maria is very pleased with the peer training she received as a member of KASIWOC. She learnt about mobility skills, reproductive health, women’s rights and entrepreneurial skills. These helped her to run her small food shop, taking care of the money, income and expenditure. In December 2008 Maria was a facilitator at a Peer Group Training course that KASIWOC held for women only. She enjoyed sharing her experiences with others.

The Guidelines will enable more disabled people worldwide to benefit from appropriate wheelchair provision. If you would like to support people like Godlisten, Sunil, and Maria you can make a donation to Motivation.

In 2006 Ludovica Swal became one of the 49 people to graduate from the Wheelchair Technologist Training Course, run by the Tanzanian Training Centre for Orthopaedic Technologists. Motivation helped to set up this course in 2000. Since February 2007 Ludovica has been working at the Mwanza wheelchair workshop in Tanzania. She is currently the only wheelchair technologist there, and is assisted by her manager who is a wheelchair user. Ludovica says that work at the workshop can be challenging, but that they are working hard to produce appropriate wheelchairs for disabled people. The Mwanza workshop provides a range of wheelchairs for adults and children. In particular, they provide wheelchairs for a number of schools for disabled children in the region. Previously local school children had been using orthopaedic wheelchairs, which were too big for them. In some extreme cases two children would be sharing one wheelchair. Ludovica and her manager talked to the teachers and introduced the wheelchairs made at the Mwanza workshop, and made adjustments to suit the children. The children and teachers at the schools are happier with these chairs. Promoting the idea of durability and sustainability, the workshop also makes adjustable wheelchairs for when the children

grow. Last November Ludovica attended the Wheelchair Stakeholders Conference, which launched the WHO Guidelines in Tanzania. She applauds the principles of the Guidelines, which promote wheelchairs that are suitable for the user’s needs, environment and lifestyle. Ludovica at work

UK We are delighted to welcome several new staff members. Katya Kasyutich joins the team as Finance Administrator, and Jill Robbins joins us as Worldmade Administrator/PA to the Executive Officers. Marianne Kent enters the fundraising team as Communications Assistant, and Megan Dalton and Caroline Matthews join us as Trust & Foundation Fundraisers. We welcome Jen Howitt back to the UK office; as an accomplished sportswoman and former Paralympian, Jen is working on the development of our sports programme Fit For Life Sport.		Africa Motivation teams in Malawi and Tanzania have co-hosted the first ever Wheelchair Stakeholders’ Conferences in their respective countries to launch the WHO Guidelines. In both countries task force teams have been appointed to develop national strategies on wheelchair provision. A wheelchair and seating clinic has been established in Tanzania to address the needs of people who require more complex postural support. In Uganda, peer group training (PGT) activities have commenced with 16 participants benefiting from the first PGT camp.
Asia Pacific In September Motivation Australia co-hosted a Wheelchair Consensus Symposium drawing together stakeholders from nine countries in the region. This event increased awareness of the huge need for wheelchair provision and appropriate solutions. This year we will work with local partners to initiate wheelchair services in the Solomon Islands and Kiribati, beginning with a two week course in wheelchair service provision in Honiara in February. Thank you to all our members and a warm welcome to anyone wishing to join. For more information, visit: www.motivation.org.au		Sri Lanka Motivation Sri Lanka (MSL) moved to a new location in January 2009. A huge building space has been provided to MSL by the Ministry of Health to initiate a wheelchair service in Colombo. MSL plans to turn the space into a Worldmade service centre of excellence. In collaboration with UNICEF, MSL completed a needs assessment for landmine survivors in Sri Lanka. Elsewhere, two of our existing projects have been received very well with the donors and discussions are currently being held for partnership beyond the stipulated project period.

Shorts We would like to thank No 11 Inner Wheel District for nominating Motivation as their overseas charity of the year. We’d also like to thank the children of Thomas’s Day School, Kensington for electing to support Motivation’s Supportive Seating programme.

Motivation Brockley Academy, Brockley Lane, Backwell, Bristol, BS48 4AQ, United Kingdom t 01275 464012 f 01275 464019 e info@motivation.org.uk i www.motivation.org.uk