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The 3rd Asia-Pacific CBR Congress

EMPOWERED COMMUNITIES

Communities tapping into the power within their own communities

CBM is an international Christian development organisation, and together with our partners, including DPOs and communities where we work, is committed to improving the quality of life of persons with disabilities in the poorest countries of the world (and those at risk of disability, who live in disadvantaged societies). CBM's vision is of an inclusive world in which all persons with disabilities enjoy their human rights and achieve their full potential.

One of the important strategies CBM employs in achieving its aim is Community Based Rehabilitation (CBR). CBM supports local partners using the CBR strategy and this support has grown over the years, including the range of disabilities being addressed. At the same time, as the CBR strategy has been expanding beyond the traditional focus on health to encompass inclusion in society; inclusive health, education and livelihood; accessibility; disaster management; and self-empowerment.1 Therefore, there has been a paradigm shift towards inclusive development and cross-disability engagement, as preserved by the UN Convention on the Rights of Persons with Disabilities (UNCRPD)2 which recognised in the preamble that “disability is an evolving concept, resulting from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”

People with disabilities in low and middle income countries are affected by the same factors which cause poverty for others, but face barriers to equitable access to health, education, training and skills development, social exclusion and to decent work. Full inclusion of persons with disabilities into all aspects of life requires changes within society. CBM and its partners increasingly engage in advocacy to influence attitudes, legislation and institutional policies to mainstream disability into development practices using the Social and Human Rights Models of Disability as a framework.

  • Community participation and community ownership of programmes, two essential ingredients for sustainability.
  • People with disabilities, like everyone else, should have equitable and barrier-free access to all services and opportunities, such as health services, education, poverty alleviation and livelihood programmes, social justice, cultural and religious events, and to social relationships.
  • The central role of people with disabilities their families and their organisations (DPOs) in implementing and managing programmes using the CBR strategy.
  • Partnership between government, DPOs, non-government agencies, business sectors, faith-based groups and other community organisations, moving towards policy support for inclusive development.

This in fact is the Global Programme Strategy of CBM

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In order to do this, we need to work in partnership with many players, especially persons with diverse disabilities and communities at all levels. We need to advocate and support communities, so that they transform themselves and reduce prejudices that exclude people, especially people with disabilities. We follow the rights based approach as laid down by the UNCRPD and in this region, bolstered by the Incheon strategy.

And CBR is the way to do it

To fully appreciate CBR it is important to define it as a strategy of community development3. Community Development is defined “as a commitment to the creation of a society that provides equal access to social, economic and political opportunities through participation.” In short, it is inclusive development.

Community development starts off from a critical analysis of the community’s current situation (e.g., using qualitative and / or quantitative tools), be it at the village level or at a macro level, and how it impacts

a) locally on the lives of the people, particularly those who are marginalised, and

b) globally on our world (e.g. forest, oceans).

It must be emphasised that people who are excluded from participating and benefitting from the fruits of development play a central role in the process. For development workers, “including the excluded” is mandatory in order to have a deeper appreciation and understanding of what already exists in a community and to truly “start from where the people are and build on what they have.”

Goals are clearly defined, based on the analysis of the situation. Again, the lead role of the people in defining their own development goals assures a “fit” or relevance to their actual situation and needs (e.g., health needs, livelihood concerns). Defining development with the people stands out against the common practice of defining for the people what they need.

People’s capacities may need to enhanced, if they are to genuinely participate in all aspects of inclusive community development (or CBR). The task of the facilitator is to help communities build their capacity to:

a) Manage their own programmes and projects;

b) Set up and strengthen people’s organisations to serve as a vehicle for collective actions;

c) Identify and develop leaders from their ranks;

d) Develop plans to meet their myriad needs in partnership with other rights-holders and duty-bearers;

e) Evaluate their efforts, not only to determine performance and gauge impact, but to continually improve their work, and

f) Research and document their local initiatives and good practices so that other communities can learn from them.

It must be made clear that in community development, or community-based rehabilitation, we are not only concerned with end results (e.g. access to socio-economic services) but are equally focused on the process that:

a)Empowers and includes the disempowered and excluded;

b)Breaks down and transforms societal and systemic barriers to genuine participation;

c)Builds respect for diversity, and

d)Recognises mutual interdependence.

So, who empowers communities? Why? Are they not empowered already (well, no, if you exclude large sections of people from community/national affairs!).

Therefore it must be emphasised that we cannot empower anyone else, but at best, facilitate a process where people can empower themselves. Therefore, inclusive communities are communities, whether local or national, which are transforming themselves because they respect diversity and desire to make sure everyone benefits and contributes to development, whether at local or national levels.

Who decides about inclusive communities? The community

ho manages CBR/inclusive development programmes? The community

Who benefits from development? The community

Who contributes to development? The community

But we can ALL HELP and learn from each other. We can be enablers and later the community can help enable another community.

a)CBR is the strategy to help communities enable themselves and to serve all its citizens. CBR is concerned with enabling persons with disabilities to serve their community in order to make development meaningful for all. DPOs and individual persons with disabilities and their families are expected to participate in the life of their community, supporting and participating in other sectoral movements;

b)CBR helps to strengthen DPOs so they can take their place alongside government in ensuring persons with disabilities have equitable access to all services and are included in all community activities,

c)CBR starts where the community is “at” (that is, what the community is currently experiencing, how it is currently functioning). It learns from the community and builds on what already exists. Every community has something to offer. Using resources from within the community is fundamental;

d)Community organisers are an essential human resource within CBR ? their competencies play a central role in facilitating the process whereby persons with disabilities (and parents) empower themselves

 Figure 3(Figure text)

For example

Advocacy for Justice

In Santa Cruz, a policeman shot dead a young man with disability, a member of the local CBR-DPO. Incensed and grief-stricken by such a senseless killing, the local DPO rallied with family and friends, taking to the streets demanding for justice.

The DPO planned well, and mapped out their campaign. They held a concert, hired a lawyer with the proceeds, researched on legal matters, and pursued the case despite the dangers, until charges were filed against this policeman.

The case was brought to court. The DPO organized more fund-raisers to cover legal and transport costs. They never eased the pressure until finally, the policeman was found guilty and sentenced.

In this case, agency lay with the DPO and they developed relationships with various community groups, with legal teams, and maintained the momentum for years against a system that had allowed this policeman to go unheeded in the past. The challenged thinking that marginalised groups cannot access justice and they showed with agency and with relationship-building, structures could be challenged and change could happen.

At Ciciendo National Eye Hospital in Bandung, Indonesia (please refer to Appendix at the end) the established structure of the hospital has been undergoing transformation initially from within but also because excluded groups, especially DPOs, learned how to effect change in proactive ways by working together and by building relationships with CBM and with the various hospital departments.

While attitudes across the board are changing from the front line staff to department heads, where physical an communication and technological access is improving, where ophthalmologists are learning “Orientation and Mobility”, where policies for inclusion are being introduced, there was one major lose ? or rather scores of people who suffered. In the interests of making accessibility improvements, vendors inside the hospital, who relied on patients and visitors to make a living, were evicted and although the hospital set them up in another location, for sure, profits were cut and who can say about “goodwill”?

As an external player but as an agent of change, we must tread lightly and be aware of our role as sometime enablers, as a resource but first and foremost students. Therefore when we work with people in the community, especially people who are marginalised, we share their stories and at best, help them analyse their situation and find their own solutions. Often our work is to motivate, to stimulate exchange and of course to provide all the information that may be missing from the local picture. IN a way we are the agency, but by building relationships we retreat so that the agency is where it should be ? with people with disabilities, their family and community. They affect the change they need in their own communities.

We, as external resources, need to LIVE, LISTEN AND LEARN FROM THE COMMUNITY: this is the basis of any person working WITH communities ? to be a resource, to share based on what the community is saying and doing.

It is only in the eyes of the community members themselves whether we can judge whether our work has been useful to their own empowerment or not. How does a family assess its’ own capabilities, determine its’ own self-worth, determine that there is acceptance and inclusion. How does a persons with disabilities likewise assess their own situation ? what are their individual dreams and joint aspirations? Can we tell them that? Surely they will determine these things themselves as they become more conscientized and participate more in community life. Once they exercise the right to participate, they begin to gain control over their own decision-making, over their own lives, just like the DPO members in Santa Cruz and Bandung who decided for themselves and affected change.

Inclusive DRR for empowered communities

In the Philippines for example post Haiyan, many interventions have been initiated and the best solutions often still come from the people and communities. Of course help and sharing and advice from many players, especially the organisations so experienced in DRR is essential but not in the absence of the community taking the lead. Yes, communities are now learning how to be more inclusive. At the moment the Office of Civil Defence, NCDRRMC, and DILG, the lead agencies for DRR, are incorporating the inclusion of persons with disabilities, older people and children into their Basic Instructors’ Guide (BIG) which we like to now call BIGGER! Field testing is currently underway. We have learned from local communities and national specialists as well that we need to plant more mangroves and plant more mangoes to take the brunt of wind and waves; we need to Build Back Better using local ways (because the people have been experiencing weather hazards for centuries and know how to go about it. Our input is to promote “universal design” and greater accessibility and inclusion, where we all participate in working out ways to rebuild and develop inclusive evacuation centres, support communities to re-build houses, say that are accessible, modern yet fitting into how a community thinks it can be more accessible.

As one member of the protection cluster stated, why do we focus on farmers and fishermen when we are supporting communities’ rehabilitation of livelihood opportunities? That excludes most women already, never mind other sectors, like persons with disabilities! Why not talk ? and work ? with farming communities, with fishing communities, so that all be included in this development?

As the municipal head of DRR coordination asked me on the steps of Estancia ? a fishing town devastated by Yolanda/Haiyan: why are INGOs putting so many resources into the repair and building of fishing boats and nets when 80% of the coral is destroyed. No coral ? no fish!

In these stories the agency of persons with disabilities was to an extent side-lined initially. Because of our commitment to partnership with persons with disabilities, we engaged with the technical working group and many more qualified and experienced persons with disabilities joined the deliberations and are also central to the field testing, along with LGUs and other marginalised groups. Relationships have been built and even the structure, the BIG developed by the lead DRR agencies are now strongly considering an inclusive BIG

EMPOWERED COMMUNITY: National to Local:
Department of Education, Papua New Guinea

Special Education Policy and Guidelines (1993)

The PNG government agency sought the advice and support of CBM and its’ partner, Callan Services.

SERCS (Special Education Resource Centres) were created and remain functioning: providing both impairment related services while promoting and implementing inclusive education programmes across 22 provinces: these programmes are managed by the local diocese & communities and funded by the National Department of Education. They continue until today

STANDARDIZATION of IEPs (Individual Education Plans)

In 2014, the Department of Education again requested CBM’s partner, Callan Services, to be their key resource and partner: a standardized IEP template and manual were developed, allowing for context/cultural diversities and will be implemented following review and field testing. Every child in school will have access to the IEP if they need one, and the plans will be implemented within inclusive settings.

Mainstream teachers are already being trained on how to complete the template (contextualized for different situations) and done in coordination with SERC personnel and families: more important, the teachers are trained on how to use the plan and incorporate into teaching lessons, again contextualized.

This story relates how the structure itself, the government sought change and sought out the disability NGOs and educators, including CBM, to make that change. But initially agency was not in the hands of persons with disabilities nor their families. However, 20 years later, as the sae Department of Education worked on the IEPs, parents and DPOs were very much participating in the dialogue and decision making.

As we consider empowerment, CBM refers to Sara Longwe’s Empowerment Framework (1990) and how this framework allows CBM to re-evaluate and recognise the need to work on all levels to bring true equality and empowerment ? and hence the GPS 2 target where persons with disabilities have a strong and central voice participating fully in all matters concerning them.

 Figure 4(Figure text)

Sara Longwe, Women’s Empowerment Framework, 1990

We can express this same framework as follows in relation to Persons with Disabilities:

 Figure 5(Figure text)

With such a framework we must also be aware of our terminology ? e.g. while we talk about access as the ability to use resources, we must also remember that persons with disabilities are denied access ? that the onus is not only on the persons with disability/family member but also on society to reduce barriers and prejudice. Conscientization goes deeper ? it is not just the ability to recognise inequality, but the ability to analyse, to discern, to realise that there are deeper forces at work, and to perceive solutions ? leading to the next step where participation is not just participating in society but participating with one’s own sector, and with other sectors, in coming up with ways to reduce prejudice and to tackle other socio-political ills; and also to participate and benefit from the fruits of development. Control, when there is equal balance, and also when there is not, but where we do have control over our own decisions ? we cannot blame anyone else ? and this is where with control comes great responsibility: where we contribute to development. In other words, we may initially need guidance and support from external resources, but as we are conscientized, we are participating and gaining some control over decisions made, and we can self-evaluate, and we can self-mentor.

In the Bicol region of the Philippines, some communities are empowering themselves and transforming what they can do for members with psycho-social disabilities and other members with epilepsy. The local Municipal Health Office tapped into one of CBM’s partners, HELP Inc., as a resource for training and mentoring. HELP personnel teach primary health workers (Municipal health doctors, nurses, midwives, as well as social workers), on the basics of epilepsy and mental health care. The one year training course involves both intense centre-based training and field supervision and mentoring. The Health Offices establish their own epilepsy and community mental health clinics, and get free medicines from the Department of Health (DOH MAP programme).

Meanwhile, adults and children with psycho-social disabilities, their parents and community volunteers organise themselves so that they can support each other, learn how to peer counsel, create awareness-raising activities for the community. They also work with the Health Office on psychosocial processing and help run the local community health centres.

Both the community and HELP have related that they witness more effective inclusive health when persons with disabilities, families, doctors, nurses, health workers, community workers and national agencies are all engaged. Naga City and municipalities such as Tinambac are examples of this self-empowerment. Other communities like Bombon, San Fernando, Goa, and Lupi, have also established their own clinics too still need to connect to the DOH for the free medicines

In Cervantes a municipality in the mountains in Northern Philippines

the motto of the local government is clearly stated: “everyone benefits from the fruits of development; everyone contributes to development”.

Therefore we ? persons with and without disabilities - must enhance our competencies to work at all levels of this framework, to bring about true equality and empowerment. Together, all sectors in the community work together to BUILD BETTER COMMUNITIES. There are many questions though. For example, are we being truly developmental? Are we engaged in the mandates of other community advocacies? Respecting and embracing diversity is not easy: while we respect and embrace diversity, we must also realise that bringing people together from such diverse backgrounds is fraught with hidden depths, with challenges ? we must be prepared for conflict at some level and be prepared how best to work together to reduce prejudice among us all.

Finally, some additional questions come to mind:

IF WE WANT TO ENGAGE DPOs in GENUINE PARTNERSHIP, we would like to kindly ask:

1.WHAT DO WE HAVE TO DO MORE OF?
2.WHAT DO WE HAVE TO DO LESS OF?
3.WHAT DO WE HAVE TO STOP DOING?
4.WHAT DO WE HAVE TO START DOING?


1 Self-empowerment: in CBR, practitioners help to facilitate the process whereby persons with disabilities and/or their families organise to empower themselves, personally and as a pro-active sector in the community.

2 UN, 2007

3 Paul Edward Muego, 2010


APPENDIX

People with disabilities empower themselves through advocacy film making

I-SEE Project)-The making of short movies for promoting public awareness on blindness prevention and disability rights

In the spirit of International Day of People with Disability celebration, in early 2015, the Inclusive System for Effective Eye-Care (I-SEE) project held a short-film preview in seven sub-districts, where primary health centers are being developed as I-SEE pilots for disability inclusive practice in eye health.

A workshop was held prior to the production, to promote understanding of inclusion, interacting with persons with disabilities, and build a solid team of filmmakers
Photograph 1

The short films are products of a team of Disabled People’s Organisations (DPOs) in Bandung. They were trained to direct and do final editing of the films. DPO members also became actors in the films. The films tell inspiring stories and convey motivating and educating messages of issues surrounding avoidable blindness and rights for persons with disabilities, their families and communities, and their commitments to help solving the problems.

Photograph 1

The final products are inclusive, completed with sign language, narration for the visually impaired and with multi-subtitles, including Bahasa and English.

During production and at the film preview, in sub-district Ciluluk, all staff at the primary health center and local persons with disabilities were involved as actors. After the viewing, many questions, clarifications and ways forward were shared among the audience of community members, health workers and persons with disabilities. All seven films were previewed at the Bandung District Administration Office and continued with a talk-show and even the Head of Bandung District Social Service Office was present. People are sitting up and taking notice. People are sitting up as the DPO community empowers itself and helps facilitate processes where the community and medical/social affairs workers also start to be enabled to make change.

DPOs working in partnership with National Eye Hospital, Bandung, Java

Ciciendo National Eye Hospital is located in Bandung, 3 hours outside of Jakarta, Java, Indonesia. The hospital serves people coming from across Indonesia, provides both public and private services, and has an outreach programme. Ciciendo Hospital is a partner of CBM and part of the I-SEE (2015 Inclusive System for Effective Eye-Care) project.

The Hospital wishes to have international accreditation. In order to get this accreditation, they need to become an “inclusive” hospital. But they also want to become a hospital that serves everyone especially the poor and those more isolated. They turn to their partner, CBM, for advice and direction.

There are several DPOs in the city, many focused on a particular impairment, but they have created their own Federation of DPOs. They are very active in advocacy work, but tended to be confrontational in their approach, demanding their rights. At the same time, the hospital is stymied by bureaucratic government processes, yet they are anxious to be internationally accredited within a short period of time.

CBM personnel reckon they need to consult and get guidance from the DPOs, and in turn link the hospital with the DPOs.

This is what happened:

  1. On-going consultation with the DPOs, as it was clear that together they had the requisite competencies to advise and support the hospital.
  2. Deepening relationships with the various department heads at the Hospital, as well as front line staff, advocating that to become more inclusive, the best advisers were women and men with disabilities themselves: and with a broad representation of DPOs, not just those representing people with visual impairments.
  3. Competencies in advocacy were deepened: it is not enough to demand rights in confrontational ways. It is essential to learn how the target group thought, their perspective, motivations, how do they work, what are their policy and operations systems? How can the needs of persons with disabilities and other marginalized groups gel with the needs of the hospital? They knew that the Hospital wants to be more inclusive. Both the Hospital and the DPOs want the same thing!
  4. The DPOs trained themselves, together with CBM, on how to be more confident and assertive when talking with department Heads; practicing different advocacy approaches, doing little things together with the hospital (initially building ramps and inserting yellow lines) and imagining what questions they may be asked, what were the best responses, how to deliver key messages in the most effective ways. They also learned to work with supporters within the hospital, building up a wider range of supporters
  5. The DPOs also ensured that they were being more inclusive themselves: all women and men, girls and boys with diverse impairments must be considered and included ? as well as other groups who were also being excluded (older people, people speaking a different language, non-readers, children, indigenous people, etc.). In other words, the advocacy would benefit many, including the hospital
  6. Meetings weres arranged between the Department heads, the DPOs and CBM, with the anticipation that the DPOs would advise, consult and support the hospital in their efforts to be more inclusive.
  7. When the DPOs’ representatives entered the hospital building to have the meeting, they encountered many obstacles ? the ramp was too high; blind advocates could not find their way around and orderlies were grabbing their hands and pulling them to the office. There were stairs entering the meeting room. The receptionist could not see them and deaf people could not hear their assigned numbers being called out. These barriers became the focus of the ensuing discussion. The representatives did not forget their planned strategy of “speaking the language” of the hospital, but were able to add personal experiences to drive home their points. This is the reality we just experienced and it made more sense to the department heads as well. They witnesses the barriers persons with disabilities experienced. For example, one woman wheelchair user for example, was carried by the orderlies to the meeting room, without asking her permission!
  8. The DPOs then presented potential solutions - together with CBM and the hospital heads. Folks were getting the idea!
  9. The DPO representatives then advised that a baseline was needed ? let us do an accessibility audit, looking at all aspects, including communication and attitudes. The audit was done by qualified persons with various disabilities, who then recommended initial adaptations that could be done.
  10. Following these adaptations, the DPOs were invited to monitor progress and shared results with the hospital ? more affordable changes were made (e.g. yellow strips for people with low vision, shorelines were built everywhere around the hospital), ramps were rebuilt according to international specifications.
  11. The Hospital shared on how they were utilising current budgets, and learning how they could maximize existing budgets but still introduce change
  12. A series of $ DID workshops were then carried out, paid by the hospital, with the DPOs and CBM as part of the training team, and preparing the modules together as well. Hospital front-liners, department heads, nurses and resident doctors all participated and each group made action plans which became the INCUSION PLAN.
  13. The DPOs with hospital heads and CBM regularly follow-up the implementation of action plans and the DPOs continue to be consultants with the hospital

RESULTS

  1. Specific adaptations were made within the hospital: e.g. yellow strips for people with low vision, shorelines were built everywhere around the hospital, braille signs, braille writing on handrails (identifying the floor of the hospital); number system for patients waiting their turn were not announced visually as well as by voice; ramps were rebuilt according to international specifications. Rest rooms and bathrooms are already being redesigned
  2. Front-liners, orderlies, receptionists, nurses all changed their approach to patients with disabilities, to older people and others: they asked permission before touching them; the receptionist walked around the desk to greet wheelchair users; consulted with patients on how they could be of assistance; start to offer information in a variety of ways (even basic sign) so that patients could make informed choices.
  3. Management are currently working on revising their Standard Operating Procedures, including the provision of a budget line for reasonable accommodation
  4. Hiring of qualified staff with disabilities has begun ? even initially in temporary posts (as they have to go through complicated protocol procedures in the meantime to hire on a permanent basis). All job advertisements are sent directly to DPOs

The process is on-going, much still needs to be done, but a working and fruitful relationship between the DPOs and the hospital has been established and nurtured.

Sharing and learning continues, addressing some of the following concerns:

  1. Are consultations within the disability sector, inclusive of all impairments (the DPOs admitted they are not well-versed on the issues facing people with intellectual, multiple and psycho-social impairments ? and need to be more inclusive)?
  2. What happens when we focus so much on our own sector? The DPOs and the hospital still need to consider other sectors who are also excluded. If we want transformative change, we cannot work in a vacuum but must engage with all development stakeholders
  3. Specific concerns of women and men with disabilities have been raised and dealt with but what else needs to be done?
  4. Who loses? In this case, the vendors selling their wares were evicted from the hospital. The hospital did try to find alternative sites for them, but profits would be much less than those made inside the hospital. In the desire to be more accessible and inclusive, many people lost their source of income ? and many of these people are women. CBM and the DPOs (and mostly the latter as CBM’s role was more in the background) have made enemies instead of ensuring “win-win” for everyone.

Finally, some questions come to mind:

IF WE WANT TO ENGAGE DPOs in GENUINE PARTNERSHIP, we would like to kindly ask:

5.WHAT DO WE HAVE TO DO MORE OF?
6.WHAT DO WE HAVE TO DO LESS OF?
7.WHAT DO WE HAVE TO STOP DOING?
8.WHAT DO WE HAVE TO START DOING?


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