From Disability Action Plan to Rehab 2030

In July 2019, the "Global Disability Action Plan (GDAP) 2014-2021" of the World Health Organisation (WHO) was replaced by the "Rehab 2030" plan. This post is about the key differences between GDAP and Rehab 2030 and also about my opinions regarding the new plan.

WHO is the health body of the United Nations (UN) and advises national governments on their health policies and programmes. Thus, Rehab 2030 is important because it will influence rehabilitation programmes and services in countries over the next decade.

Global Disability Action Plan (GDAP) 2014-21

The overall goal of the GDAP 2014-21 was "Better health for all persons with disabilities" and it had three objectives:

(1) To remove barriers and improve access to health services and programmes

(2) To strengthen and extend rehabilitation, habilitation, assistive technology, assistance and support services and community-based rehabilitation (CBR)

(3) To strengthen collection of relevant and internationally comparable data on disability and support research on disability and related services

The GDAP 2014-21 was supposed to reach these 3 objectives through human rights based approach, empowerment of persons with disabilities, life-course approach, culturally appropriate person-centred approach, multi-sectoral Community-Based Rehabilitation (CBR) and universal design.

Rehab 2030 Plan

The new plan has a wider view of the rehabilitation services by focusing on functionings which can be limited due to health conditions, environment and by the interaction between these two. It proposes to develop Packages of Rehabilitation Interventions (PRIs) for the following groups of functionings within the next 10 years:

(1) Musculo-skeletal:Low-back pain, neck-pain, fractures
Other injuries
Osteoarthritis, amputation, rheumatoid arthritis

(2) Neurological:Cerebral palsy, brain injury, Alzheimer-dementia, spinal cord injury, Parkinson's disease
Multiple sclerosis, motor neurone disease, Guillain-Barré

(3) Cardio-Vascular Diseases including myocardial infarction and heart failure

(4) Chronic respiratory diseases

(5) Neoplasms

(6) Mental disorders:Schizophrenia
Developmental and intellectual disabilities
Autism spectrum disorders

(7) Sensory Impairments:Hearing loss
Vision loss

Rehab 2030 aims to make these PRIs to be available as part of the Universal Health Coverage at different levels of the health services, as shown in the graphic below.

The lowest level of intervention is that occurring at home and in the community - informal and self-directed rehabilitation. Moving up from below, the other levels of rehabilitation interventions are primary health care, secondary & tertiary health care, community-delivered rehabilitation and specialized high intensity rehabilitation.

Changes from GDAP to Rehab 2030

From Impairments to health conditions: In many ways, the vision of Rehab 2030 is very different from that of GDAP. Till GDAP, the focus was on the effect of impairments. The focus of Rehab 2030 is on the impact of health conditions. This subtle shift, focusing on "health conditions" instead of "impairments caused by the health conditions" opens rehabilitation programmes to the needs of other groups of persons, such as elderly persons, and persons with cardiac and respiratory conditions.

Rehabilitation Interventions: The other significant change from the past is the focus on "rehabilitation interventions". During the late 1980s and early 1990s, the Disability & Rehabilitation team at WHO had decided to focus on the delivery of rehabilitation services at community and primary health care level, leaving aside the issues related to rehabilitation interventions at intermediate and higher levels. However, over the past 20 years, new technologies have introduced a better understanding of health conditions and raised opportunities for their treatment which were not available in the past. WHO needs to provide guidance about these interventions. For example, today some children born with deafness can have cochlear implants and grow up hearing. This change goes in that direction.

Outreach Services: Another significant change is the acknowledgement of a level of rehabilitation services, which was not mentioned in any WHO document over the past many years, the "community-delivered rehabilitation". During our visits to rehabilitation services in different countries, we often came across the rehabilitation staff visiting some peripheral or rural areas to provide rehabilitation in the communities. This was called "outreach rehabilitation services". I remember a few discussions in WHO about the undesirability of these outreach services - they were costly, and often did not have adequate staff. I think that by acknowledging the Outreach services, it accepts an existing reality instead of closing our eyes to it due to ideological beliefs.

Downplaying CBR: The 4th significant change is that it downplays "community-based rehabilitation" (CBR). Instead of CBR, it calls it "informal and self-driven rehabilitation".

CBR did start as informal and self/family driven rehabilitation interventions in 1980s. However, in 1990s, other interventions related to education, livelihood, etc. were added to the CBR mix, which were not rehabilitation interventions. More recently, many organisations involved in CBR programmes have opted for the term "Community-based Inclusive Development" (CBID), which means that perhaps we can go back to using the term CBR only for the rehabilitation intervention activities at community level. Anyway, the new rehab plan rightly limits itself to the health services component of rehabilitation instead of mixing it with CBID and non-health sector interventions. 

Needs for defining community rehab interventions: I also hope that through the PRIs, Rehab 2030 will also look at defining of rehabilitation interventions for "informal and self-driven rehabilitation". During 1990s, WHO had played a crucial role in development of simple manuals on basic rehabilitation interventions, for example, for children with cerebral palsy and persons with spinal cord injury. Today, many countries have CBR as part of their national rehabilitation strategies. It will be useful for them to have updated information on evidence-based basic rehabilitation interventions for use at self-care and community level (though in part, internet is bringing better information, skills and technological support to the communities and families, who can also share their personal experiences with other communities).

Social Model and Rehab 2030

Rehab 2030 hardly ever uses the word "persons with disabilities", because it focuses on "functioning related to health conditions" instead of "impairments". However, persons with disabilities will be one of the biggest group of the users of the rehabilitation interventions and it will be difficult for WHO to not engage with them. The UN Convention on the Rights of Persons with Disabilities (CRPD) and the focus of Sustainable Development Goals on persons with disabilities, make it obligatory for WHO to engage with the DPOs/OPDs. For example, the UN Flagship report on disability which came out earlier this year (2019), also links with rehabilitation and assistive technology services.

During 1980s-90s, the Disabled Peoples' Organisations (DPOs or Organisations of Persons with Disabilities OPDs) came up with the "social model of disability", which was seen in contra-position to the "medical model of disability", implying that medical rehabilitation services were somehow bad or not useful. I personally believe that the two models are complementary - medical model focuses on individuals with impairments and social model, helps us to fight against the barriers created by the society. Both are needed. Rehabilitation interventions in the health services can not be organised through the social model - they are medical interventions and are carried out in line with the way medical/health services are organised.

Persons with stable impairments such as persons who are blind or deaf or those who had a disability in the childhood and are now grown-up, such as persons with cerebral palsy, often complain about "labelling" of their identities with their clinical diagnosis, which creates specific expectations and prejudices among people. However, rehabilitation services cannot provide treatment without a diagnosis. Such issues will continue to be a cause of friction between persons battling for superiority of social model over the medical model of disability. However, persons with disabling progressive health conditions understand the complementarity of the two models of disability in their lives much better.

Final Comments

The famous Alma Ata conference on primary health care (PHC) held in 1977 had proposed "preventive, promotive, curative and rehabilitative care" at the community level. However, in practice, citing lack of resources, PHC was limited to certain key interventions, which had excluded rehabilitation services.

During the 1990s, repeated attempts to promote inclusion of rehabilitation services in PHC had yielded little or no results. Only during the past 10-15 years, some countries have adopted the CBR approach and a few of them have linked it with their PHC services.

Today, in most countries we have persons with disabilities and DPOs/OPDs who are strong advocates for their rights while countries have signed and ratified CRPD. New national disability policies and programmes related to SDGs may also be offering opportunities for promoting rehab services in countries, which were not there in the past.

The increase in ageing populations and chronic life-style conditions, have made it imperative for people to play a greater role in their self-care, while using hospitals and specialized services for acute care and complications. New technologies including internet and mobile phones are playing a role in people's access to information. Rehab 2030 will need to facilitate this transition.

By focusing on funtionings, hopefully the new rehabilitation plan will help us to think of rehabilitation needs in a holistic way.

*****

#rehab2030 #rehabilitationneeds #who_rehab #cbr #personswithdisabilities

Accessible Children's Park in Schio

I had heard about the construction of an accessible children's park in our city Schio. I like going around on my bicycle and I had tried looking for that park a few times, but had not managed to locate it. Finally, yesterday during an evening walk with my wife, we found it.

This post is about this new park of Schio (VI, Italy), which is accessible to both adults and children with disabilities. It is a park for all, no one is excluded.

Right to Play

Article 31 of the U.N. Convention on the Rights of the Child (1989), states that all children have a right to leisure, play, and participation in cultural and artistic activities. Irrespective of country, culture, religion, and social status, all children have always played from prehistoric times. You just need to look at baby animals to understand the importance of play in their growth and well-being. Yet, few persons think about children with disabilities and their right to play. Accessible playing grounds and parks are needed so that they can be children like all the others.

Lack of play opportunities and social interaction with other children hampers the proper development of children with disabilities.

Even adults with disabilities need accessible playgrounds for their children, so that they can accompany their children and play with them like all other parents.

An Accessible Park and Playground

An accessible park and playground does not have stairs or narrow gates at the entrance. If it has stairs, it also has a ramp for the wheel chairs. Inside the park, there are suitable paths for wheel-chairs and crutches and persons with mobility problems. For the blind and low vision persons, the paths are well-marked and easy to see. At the path crossings, to help the blind persons, there are suitable surface marking which they can feel with their walking canes. Where necessary, even inside the park the stairs may be accompanied with ramps. They should have clear sign boards with both icons and texts to explain each play-structure. For blind persons recorded audio messages can also provide information.

Accessible park does not mean that every play-structure will be accessible to all the children with disabilities. There can be specific play-structures for specific groups of children with disabilities, such as the swings for children on wheel-chairs. For the use of some or most play structures, help may be needed from adults or other children, as it happens for children without disabilities. Different age groups of children may also need adult supervision.

Accessible Park in Schio

The park is located in Magre part of Schio, on Via Pio X, next to Banca Alto Vicentino. The park has been partially completed with rides and play structures, while they still need to build the Baskin court (for playing modified basketball, which can be played together by all children including those on wheel chairs or with other disabilities - it was invented in the Italian city of Cremona in 2003). It is supposed to be the biggest accessible parks in the Veneto region.

The park has a ramp for reaching the top of a slide, and each ride/play structure is marked in vivid colours. Each area is made of some soft material which acts like a cushion if you fall down. Some of the rides look strange, not usually seen in play grounds. Many of them have a futuristic look. The next time my grand daughter will come to visit me, I am planning to go back to this park and explore all these rides with her.

The park is not very well known, probably because it is not complete yet and there are no public sign boards to guide people to this place. It would be great if this park can be connected by a bicycle track or a passage to the larger park and cycle track on the other side of Alto Vicentino bank (along Via Campo Sportivo), because then more children can reach here without needing some adult to bring them here on a car.

Conclusions

I think that the idea of making an accessible park is great. City municiple government and Alto Vicentino Bank along with other partners deserve our congratulations for thinking of it.

This visit brought back a memory from Guyana (S. America) of many years ago. I had met two boys, 8-12 years old, both had a genetic muscular dystrophy, which was gradually becoming worse. The older boy was already on a wheel-chair, though he could still manage to climb stairs with difficulty. While I was talking to their grandmother, both the boys had found a slide and immediately climbed up to slide down and play (in the image below). There was no treatment for their condition and both boys were destined to get progressively worse. I remember the desperation of their grandmother and their joy in playing.

When we were visiting the accessible park of Schio, there was a man on a wheel chair with his family while a child on a wheel chair was playing on one of the rides. To see them in the park was the proof that all cities need such places, because we all have persons and children who can't enter playgrounds - they are waiting to come out of their homes and play with others.

*****

#accessibleparks #accessibleplayareas #accessiblesports #schio #italy

Challenges of Emancipatory Research

Recently I spoke about Emancipatory Disability Research (EDR) in a conference in Italy. This post presents some of the key points from that presentation, with a special focus on challenges of conducting EDR in a rural or peripheral area of a developing country.

This is my 7th article about Emancipatory Research and if you wish to learn more about this research approach, you can check the whole list of the articles.

EDR in Developed and Developing Countries

In 1990 Mike Oliver (1945-2019) proposed the basic idea of Emancipatory Research - A research about disability based on the social model and carried out by persons with disabilities. He suggested that such an approach will provide information which can't be provided by non-disabled researchers.

The university courses on Disability Studies starting in late 1990s, spread the idea of emancipatory research. Thus, most examples of EDR come from developed countries which run courses on disability studies. There are a few examples of EDR conducted by persons from developing countries, studying in the universities in Global North, who did their research in developing countries. Many of these were researches conducted by university-educated individuals with disabilities and involved personal stories or in a few cases, a small number of persons with disabilities.

On the other hand, the model of EDR developed in the AIFO projects in developing countries over the last 10 years, is different. Here the research is carried out in collaboration with the local Disabled People’s Organisations (DPOs), while persons with disabilities from communities are given a short training and become the researchers. Their research has a collective approach and it focuses on the main barriers they face in their lives. A process of information collection followed by reflections and collective discussions are essential parts of these EDR initiatives. I like to think of these as the Freirian model of EDR, since it seems to reflect the ideas of Brazilian Pedagogist Paulo Freire.

All my discussions in this paper are based on my experience in EDR in developing countries in the AIFO Projects.

Freirian Model of EDR

I think that before proceeding further, it will be important to understand the general process of EDR implementation in AIFO projects:

(1) It is a part of an on-going community programme. The programme staff plays a key role in initiating discussions with DPOs and other stake-holders about conducting EDR.

(2) DPOs and community organisations such as Self-Help Groups (SHGs) are used to identify persons with disabilities who will be trained, who will become the researchers and carry out the research.

Depending on the country, local context and the activities of the community programmes, the researchers can be persons with different education levels (including illiterate persons), men and women, of different age groups, with all the different kinds of disabilities and different severity of disabilities.

(3) A group of persons with different kinds of expertise are also identified to create a Technical Advisory Group (TAG), which supports the researchers by helping to plan the research and providing feedback about the research process. This group includes academic researchers and disability experts.

(4) The researchers are provided a brief training (mostly 4-5 days), focusing on examining the different possible causes of a problem, the concept of barriers and the social model of disability, how to conduct interviews, how to carry out accessibility audit, basics of ethics, privacy and bias, and how to prepare a report. The final session of the training helps them to discuss and identify the problems about which they would like to conduct their research.

(5) A research plan is made and a calendar of activities is prepared with the support of the Programme staff. Researchers visit their communities, interview authorities, service providers and other disabled persons to collect information about their selected problem.

They meet periodically to share all the information collected about a problem and reflect on their findings. Sometimes they invite other persons as guests to these meetings. They also think about and discuss the possible solutions and strategies to address those problems, including what they can do themselves, what can be done at community level and what can be done by the DPOs.

(6) The research may last at least a few months, more usually a year or even more. All their meeting reports including their findings, reflections and suggestions are reviewed by the programme staff, DPOs and TAG members, who can provide feedback, additional information and comments.

(7) As mentioned above, the process of enquiries, discussions and collective reflection on specific issues is similar to the principles of Freirian Praxis as used in Participatory Action Research (PAR). Often, during this process, the researchers along with other persons with disabilities in the communities and with DPOs, can initiate specific activities to respond to the needs they have identified.

(8) The whole process is accompanied by a reporter, a person who documents all the findings, discussions and follow-up activities.
Challenges of Freirian model of EDR

Over the past 10 years, I have been involved in 6 EDR projects in AIFO projects (2 in India, one each in Palestine, Italy, Liberia and Mongolia).

Challenges of EDR

Some of the key challenges of these researches in my experience have been the following:

Involving persons with specific disabilities as researchers: The EDR process promotes empowerment of disabled persons who are involved as researchers. However, not all persons benefit equally. Some persons, who are very shy and lack self-confidence, they require a lot of effort and support in the beginning and often other researchers get impatient with them and ask to replace them.

Persons with specific disabilities such as deaf persons, persons with cerebral palsy, persons with intellectual disabilities, persons with mental illness, and persons with leprosy, are usually excluded from EDR. Usually they are not so active in DPOs. Both DPO staff and Programme staff, may think that it will not be easy to work with them. Thus, they are often excluded and it requires persistent dialogue with DPOs, staff and other disabled persons to convince them about their inclusion.

Participation of women is another key issue. Even DPOs which have strong women leaders in top positions, are not able to convince communities to select disabled women as researchers. Even when selected, often men dominate the discussions and when women speak, the men may laugh or make comments. It requires continuous dialogue with researchers to make them aware about these biases.

Unrealistic expectations from the research: Some times DPOs and Programme staff have completely unrealistic expectations from the research. After 4-5 days of training, they think that researchers can do all kinds of qualitative and quantitative research. They may have little patience in supporting researchers who have difficulties in articulation or who are slow in understanding. Sometimes they expect specific kinds of written reports from researchers and can be too severe in their criticisms.

NGO programme staff can also be dominating and interfering in the research process, imposing their ideas on the researchers.

Limited Support of TAG experts: Most of the time, persons invited to become part of the Technical Advisory Group (TAG) of experts of an EDR are busy persons with a lot of responsibilities. Unless invited to a specific EDR activity to conduct training or provide advice, they may not have the time to read EDR reports and provide feedback and advice to the researchers. At the end, it is important to ensure that at least 1-2 persons with good research experience follow and support the whole EDR process, while the specific support from the remaining expert members of TAG needs to be negotiated.

Reporter: The person selected to write all the EDR reports is the interface between researchers and the rest of the Programme team and TAG members. Having a capable person in this role, can be the most important factor in ensuring success of EDR. The person should be articulate and computer literate.

We have tried with both kinds of persons in this role - person with disability as well as, a non-disabled person. Both can be a support or a hindrance to the process.

A disabled person as a reporter can be too anchored to his/her own disability experience and thus become an obstacle to free discussions in the group. Specific disabilities may limit his/her interaction with other researchers. Having fixed ideas about what should or should not be done about specific disability issues, can also block open discussions in the group.

A mature person who is self-secure and does not need to dominate others, who can raise question gently, and facilitate constructive and open discussions which are inclusive of all the researchers, is needed for this role.

Language issues: In rural areas where EDR is carried out, often persons with limited education can only speak and understand local dialects. Reporter and programme staff may not understand these languages. Even researchers who can understand these languages, may not be able to translate all the ideas and concepts in to the official language. Thus, often important information can be lost in the translation and may not be a part of the official research reports.

Community activities: Many discussions and at least part of the activities stimulated by the EDR process take place in communities and small groups, outside the formal meetings. Researchers may not understand the importance of bringing all this news and information to the reporter.

Difficulties Related to Formal meetings - these have pre-decided agendas and limited time. In these meetings, there may not be enough time to share general information about what is happening alongside the research process. Even when researchers bring this information, the reporter may not see its relevance.

Thus, many collateral developments related to EDR are ignored in the official reports.

Measuring Empowerment: A key goal of EDR is to promote empowerment of the disabled persons participating in the research. While there is a lot of anecdotal information about how the researchers and other disabled persons feel empowered in this process, there is no standardised way to measure the change in empowerment of individuals. While there are some attempts to measurement of empowerment (such as by the World Bank), these are not practical for use in the context of EDR.

Conclusions

The Freirian Model of EDR needs more reflection and understanding. If similar models are being tried anywhere in the world, it will be good to exchange information with them.

EDR can not answer all kinds of research questions. It can play an important role in understanding how local contexts and cultures, including lack of proper infrastructure and lack of services, influence the barriers faced by persons with disabilities in developing countries. These experiences of EDR can provide a richness of details about people’s lives and about the solutions they find to overcome their barriers, that may be difficult to get with any other research approach.

There is still a lot about the Freirian model of EDR, which needs to be understood and defined.

*****

County Report: Disability in Liberia

Earlier in 2018 I was involved in the preparation of a report on disability and rehabilitation in Liberia. It was a part of the “Disability And Start-Ups” (DASU) project of AIFO/Italy with funding from AICS, the Italian Agency for Development Cooperation.

In this article, I want to share some of my reflections from this effort. You can download the full report (PDF, 1.4 MB) and the Summary Report (PDF, 0.6 MB).

Background

I was asked to carry out a diagnostic study to look at the capacities, skills and needs of the organisations of persons with disabilities (DPOs) in 3 counties of Liberia – Bong, Grand Gedeh and Nimba. The information collected from this study would have helped the project to plan the training of the DPO members.

In 2006, the United Nations (UN) had approved the Convention on the Rights of Persons with Disabilities (CRPD). This Convention asks the Governments to involve the DPOs in planning the different disability related activities. At the same time, the DPOs are expected to monitor if the Convention is being implemented properly in their countries and to provide their independent reports to the UN. For all these roles, DPOs need specific knowledge and skills.

DASU project focuses on capacity building and strengthening of DPOs in Liberia by working in collaboration with the national umbrella organisation called NUOD (National Union of Organisations of Disabled) that unites all the Liberian DPOs. NUOD representatives joined me for different activities of the diagnostic study.

DASU project focuses on livelihood and economic independence of disabled persons. However, a separate baseline study on livelihood-entrepreneurship was planned in the project, so in my study I did not look at these aspects and my focus was wider and more general.

Conducting the Study

Our original plans for diagnostic study had to be slightly modified – considering that some groups of persons with disabilities were greatly under-represented in the county DPOs, it was decided to also involve 2 national level DPOs from Monrovia in the process: the DPO representing persons with mental health issues called Cultivators for Users’ Hope (CFUH) and the Liberian National Association of the Deaf (LNAD).

At the beginning and the end of this article you will find the links to download the full and the summary versions of report. However, here I would like to explain a little more about the Desk Review component of the study.

Desk Review on Disability & Rehab in Liberia

The Desk Review was supposed to look at the available information about DPOs and NUOD in Liberia including any formal and informal publications and reports.

I was prepared to find little published information regarding the county level DPOs. However, a large number of foreign-aid and development projects had been implemented in the country in the decade following the end of the civil war in 2003. Thus, I was expecting that there would be plenty of information regarding the Disability and Rehabilitation (D&R) from the foreign-aid and development sectors.

However, I was surprized by an overall lack of materials and information about D&R. There were few reports prepared in a past few years and they had patchy information. For example, about the number of persons with disabilities in Liberia, these reports cited a survey carried out by a UNICEF project in 1997 while the disability data collected during the national census in 2008 was largely ignored.

Reasons for Lack of Systematic Information About D&R

A bit of digging in different archives and talking to some key persons, brought out some of the underlying causes of this lack of available information about D&R sector in Liberia. These included the following:

(1) Civil war in Liberia: The country went through a brutal civil war from 1989 to 2003. Almost 8% of the Liberia’s population died during the war while more than one-third was displaced. The war destroyed most of the country’s infrastructure, including schools and hospitals. The war created huge challenges. For example, at the end of the war, there were about 21,000 child soldiers who had to be integrated and rehabilitated. Thus, it is easy to understand why there was little information available about Disability & Rehabilitation services from the pre-2003 period.

(2) The Post-Civil War Reconstruction: The rebuilding of the country after the civil war started slowly. In the D&R sector, the Government took quick decisions but these were not followed by effective implementation. For example, an autonomous body called National Commission on Disability (NCD) was set-up in 2005, but till 2011, it did not have any staff or budget.

On the other hand, slowly but surely, Liberia had started growing and became one of the fastest growing economies in Africa. In 2013, Liberia’s GDP was growing at around 8%.

(3) Ebola Virus Crisis (EVC): In 2014 when EVC broke out in Liberia, the Government had already started to work on a national Disability Action Plan (DAP). The crisis brought everything to a standstill as businesses closed, programmes stopped and the international collaborations were blocked. All the expatriate staff of the foreign-aid and development organisations left the country in a hurry, taking with them their reports and information - few, if any of these reports were available on the internet. The GDP growth of Liberia turned negative.

The EV crisis was officially closed in 2016. After that the country is slowly growing back. For example, in 2017, the GDP growth has been a little more than 2%.

The international NGOs active in D&R sector in Liberia are still few (mainly AIFO/Italy and Sight Savers Int.) probably because the fears of Ebola virus still linger.

I can only guess that because of Ebola crisis, most of the archives of international organisations active in Liberia were lost. If they had any websites, they were also closed. Though NCD, NUOD and the national level DPOs still have persons who were there and saw the events of the past 20-30 years, there is little documented information or reports.

The Liberian disability organizations have access to very few resources and are fighting for their survival. They do not have resources to invest in documenting their histories and stories. I think that it is an area that would benefit from research and documentation by the university students from Liberia and abroad.

This is why I have enlarged the section of the Desk Review in my report, to provide a historical overview of the D&R sector in Liberia. However, I am sure that a lot of information is still missing. Persons and NGOs who had worked in the development sector in Liberia during 2003-2014, including the expatriates, probably they will have some of the missing information.

Conclusions

The Diagnostic Study on county DPOs in Liberia was published recently. However, I am planning to keep on updating it over the next couple of years. Thus, if you have any comments, suggestions or corrections regarding this report, I will appreciate hearing from you. If you have access to any specific reports or publications regarding disability and rehab issues in Liberia that are not mentioned in the bibliography of this report, do share them with me.

You can download the last version of the full report (PDF, 1.4 MB) on Disability & Rehabilitation in Liberia. The report is also available in a Summary (Easy to Read) version (PDF, 0.6 MB).

Finally, I would like to thank all the persons who made this work possible. These include a large number of persons from county DPOs, national DPOs, and NGOs in Liberia and AIFO office in both Liberia and Italy. My special thanks go to Naomi Harris, Daniel Dagbe and Heylove Marks from NUOD/Liberia and Ricardia Dennis from NCD/Liberia.

All the images used in this post come from my meetings with persons with disabilities and their organisations in Liberia.

*****

#liberiadisabilityreport #liberia #dposliberia #nuodliberia #personswithdisabilitiesliberia 

Emancipatory Disability Research: Disability & Sexuality

To explain the basic concepts of Emancipatory Research (ER) and especially, to explain, how it is organised, I am going to present some examples of Emancipatory Disability Research (EDR). All these examples are about disability, but I think that the basic principles would be same for conducting ER with other groups of marginalised persons.

My first example of EDR is from 2001-02 on “Disability and Sexuality” in Italy. It was carried out as part of my thesis for a master degree in disability studies from the Leeds University in UK. It was also the only time in which I directly participated in the research-exchanges and that experience made me understand how sharing experiences, ideas and views can be so empowering.

Background

The idea of conducting a research on disability and sexuality came during a conversation with a friend who had lost an arm during an accident some years ago. She told me that after losing her arm, she had become sexually invisible to the men. Though at that time, I was married for more than 2 decades and was a father of a child, I found it difficult to talk about sexuality with others. I thought that doing a research on disability and sexuality would be a good way for me to overcome my inhibitions.

Most of the research carried out about sexuality of disabled persons looks at it as a problem, as a part of their impairment. It is often seen as something pathological, to be treated, cured and controlled.

I wanted to look at sexuality from the point of view of persons with disabilities. Expressing our sexuality is our human right. I wanted to see how families and communities look at and influence the desire of expressing sexuality of persons with disabilities.

The research involved a small number of persons (21), both men and women, above 18 years of age and with different disabilities. Except for one gay person, all the remaining participants were heterosexual. The research was carried out through emails and had only one physical meeting when the participants met each other.

Research Process

The whole research was in Italian and was later translated into English. It was organised in the following steps:An announcement was placed in some disability related newsgroups to ask for volunteers for a study on disability and sexuality.

Persons responding to this announcement were sent more information about the study and were asked to provide some general information.

The main research issues were defined in collaboration with the participants (25 persons).

Then over a period of four months, these issues were discussed with the participants through individual emails. 21 persons out of the 25 who had originally agreed, actually completed this phase of the research.

A huge amount of text material of our discussions about sexuality were collected. I analysed this material and produced 16 theme reports in Italian, which were shared and discussed collectively with most of the participants (a few persons preferred to have these discussions individually instead of collectively).

On the basis of the theme reports and discussions, I prepared a summary report in Italian (later translated into English, which was used for my thesis).

Though I coordinated the whole process and asked most of the questions, the participants were free to raise questions to me, including questions related to my sexuality. Throughout the process, I tried to be honest and sincere in my answers to all the questions asked to me.

Impact of the research

At the end of the research, most of the participants expressed appreciation of how it had been learning and empowering process for them. Here are the comments of two participants:

Anna: I am reading the reports on our answers and it is getting to be very interesting. It is an “experience” in the sense of reading what others think and feel, makes me feel very close to them … first I was speaking alone and now I hear voices of others and that is very beautiful. … I have to say that reading what you have written, what we have written, it is such a strange and moving experience that I can’t describe it. Every evening when I download my mail, I am hoping to see another of these reports and then after reading them, I think about them for a long time. When I started participating in this research, I didn’t think that it would be such an involving experience. Reading your words is like looking at myself through a mirror. Alice: I have read the report in the morning and for the whole day, I kept on thinking about it. I am reflecting on things that I had never thought about before. I went some times to the disabled people’s organisation office – but it is full of persons complaining all the time. I didn’t want to go back there again. I never felt part of a group of “disabled persons”. When people earlier used to say the “world of disabled persons”, I couldn’t understand what they meant. I never thought that by having similar needs we become similar persons … reading this report, it was like a flash of light in my head. Perhaps when the non-disabled persons say “you all”, it is not so strange after all.Note: The names of the persons have been changed.

For me personally, participating in this research was a life-changing experience. Some of the things which the participants wrote to me, they had a deep effect on me. Often, I spent whole days thinking about what people had shared. It prompted me to share more honestly my own thoughts with the others.

18 years after this experience, I still remember the strong emotions provoked by this research. With one participant, I continue to be friends even today. I feel that this research helped me to become more open about my own sexuality and also to be more accepting of other persons’ diverse ideas about sexuality.

Issues Discussed During the Research

This research touched on different aspects of sexuality - from our need of intimacy and the meaning of sex in our lives, to the role of masturbation, pornography or the experiences of sexual violence. It gave me a better understanding of how we are influenced and changed by the attitudes and expectations of the people surrounding us. It provided real life examples of how different barriers intersect and reinforce each other in the lives of disabled persons.

Some of the issues raised up during our discussions were completely new to me. For example, I had no idea about specific sexual aids for persons with disabilities, cybersex, telephone sex and devotees (persons who like to have sex with a disabled person). Our discussions were sometimes about pain and frustration, at others they were laced with humour and irony.

For example, during the discussion about devotees, one of the participants wrote, "If you know someone, let me know! I am only joking, I don’t think I want a person who wants me only because I am disabled and not because I am Alice, though it would be the first time in my life that my disability is actually useful for something!"

I think that it made me aware about aspects of sexuality that otherwise I would have never understood. For example, a few years later, while talking of sexuality with a transgender woman, she said, "I don't have a real vagina, so I can't really enjoy sex."

It made me think of my discussions with the participant of this research, who was a tetraplegic, had no sensations in his body below his neck and for him sex meant licking and giving orgasm to his girlfriend. He had never said that he could not enjoy sex, rather the opposite, he craved it! For him sex was much more than genitals - it was about affection, intimacy, complicity and the joy of having a deeper human connection.

For me, it was important to understand that both the point of views expressed above, that of the transgender woman and that of the guy with tetraplegia were equally valid.

Conclusions

If you wish to learn more about this research, you can download my research thesis (PDF).

I think that my thesis captured the spirit of this research. But it had a word-limit, thus I was forced to leave out a lot of things that were insightful and significant for me. Therefore, compared to the thesis, I feel that my 16 theme reports written in Italian were more powerful. For many years, I had thought of translating into English all those theme reports and sharing them online, but I never came around to actually doing it.

Doing this research convinced me about the importance of emancipatory research in which a group of marginalised persons can gain empowerment by talking to each other and by sharing experiences and ideas with each other in a systematic way that focuses on personal as well as, collective issues such as barriers.

Ever since that first EDR conducted 18 years ago, I have been involved in facilitating a number of such researches in different parts of the world. However, after that first experience, I have never been a part of the participants, who interact with each other. I remain outside the group, helping them to reason it through, train them in how to think about issues, help them understand and analyse their reports.

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#emancipatoryresearch #disability #sexuality #report #thesis

Planning Emancipatory Research

My first 4 posts introduced some basic concepts related to emancipatory research (ER). With this 5th post, we are now going to look at more practical aspects of ER – how to plan an ER.

I believe that the ER can be a useful approach for promoting empowerment of different marginalised groups. However, all my experiences are in Emancipatory Disability Research (EDR). If you have used a similar approach for conducting research with other marginalised groups, I would love to exchange views with you. You can check the full list of my posts on emancipatory research.

Selecting the Research Themes

Identifying the research questions or the themes is fundamental for ER. The research questions should be such that they promote empowerment. ER needs to identify problems that are felt as important by the marginalised groups themselves.

For promoting empowerment, the research needs to focus on those problems in such ways so that the marginalised groups can understand the different dimensions and contributing factors of the issues. They need to ask why and understand why things happen in the way they do, and how do environment, state, society, community, families and they themselves contribute to it.

Using a human rights approach, which means focusing on peoples’ rights and how these rights are violated or not respected, is one way to stimulate people to fight for those rights and promote empowerment.

In Emancipatory Disability Research, this also means looking at issues through the social model approach focusing on the way different kinds of barriers (attitudes, resources, physical, legal, social, cultural) surrounding the persons with disabilities create and increase disablement, and limit their participation and inclusion.

Prerequisites for starting Emancipatory Research

Normally the desire for conducting ER will not come from the community of the marginalised persons – they do not understand it and how it can help them. Thus, ER has to be stimulated and supported by outsiders.

ER can only be a part of an on-going community-based programme or activities. You cannot just go as an outsider to a community and think of doing emancipatory research.

ER is conducted by the marginalised persons themselves, so if you are facilitating the ER process, be ready to give up control. Be willing to accept that people may decide to go into directions which you did not foresee or plan.

Academic researchers and other experts need to play a supporting role in ER. They must accept that they may have to sit quietly and listen (one of the most difficult things to do!). They have to give advice only when asked and they must not resent if the researchers (marginalised persons) do not accept their advice.

ER’s goal is to generate new knowledge from the point of view of marginalised persons and promote their own empowerment. The knowledge they want to generate may not seem so important to academic researchers and experts.

ER can only happen in a process lasting different months or years. Thus, ER cannot be completed in a short time by outsiders who go in for a few weeks, collect information and leave. ER is a "slow research" that requires its own time of maturation.

Identifying Researchers

Among the marginalised group of persons, you need to think of the persons who will conduct the research. Let me give you 3 examples from the ER projects in which I was involved to see how different groups of persons may be chosen:

(1) In an ER project in rural Karnataka in India, we wanted to look at the different barriers faced by all the different groups of persons with disabilities. We identified 8 groups of disabilities for the research (vision disabilities, hearing and speech disabilities, physical disabilities, etc.). We decided to identify 1 man and 1 woman with each of those 8 kinds of disabilities. We wanted both young and old persons, educated and uneducated persons, and persons living in district towns as well as those living in villages. So, in the end, in our team of 16 selected persons we had representatives from all these groups.

(2) In an ER project in Gaza in Palestine, we wanted to look at the barriers faced by young adult women with different disabilities. They identified about 25 adult women with different disabilities who were trained as researchers. It was impossible to identify women with intellectual disabilities and with mental health conditions for the role of researchers because the community workers could not understand how these 2 groups of women could contribute anything useful. This highlighted some of common negative attitudes against certain groups among the persons who may have long experience of working in the disability sector.

(3) In an on-going ER project in Mongolia, we are looking at the barriers faced by young persons (less than 30 years) with moderate to severe disabilities who live in the capital Ulan Baatar. We selected persons from different parts of the city including from the urban peripheries where families are poorer. We worked with Independent Living Movement Mongolia and other DPO federations to identify 35 researchers. However, finding persons of less than 30 years was a challenge and, in the end, we accepted persons up to 36 years old.

Thus, based on the objectives of your research, you need to define the criteria and a strategy for selecting your researchers. Usually persons with disabilities have their leaders who can speak out confidently. The challenge for ER is to find persons who are potential leaders, who may not be very confident and who may not be able to express themselves, but ER can help them to become more empowered and future leaders.

Training the Researchers

Persons from the marginalised group who have been selected as researchers need to be trained in how to conduct the research. The training will depend upon the research themes and methodology but in my experience, it is always important for them to understand how different factors influence a situation.

For example, if in our research we are looking at why children with disabilities are not going to the school, we have to think about existing education policies, attitudes (of teachers, of other children, of families), physical accessibilities, transport, school fees, skills of the teachers, number of children in the class, and so on. Most persons have some ideas about the causes of problems and it is important for them to learn to not focus only on their own ideas, but learn to see issues from different point of views. I prefer to dedicate one day of training to making the future researchers doing different exercises about the possible causes of different problems.

The researchers also need training about general skills such as how to ask questions, listening with empathy, being respectful to people, and being aware about their own prejudices. They also need to reflect on issues of confidentiality, privacy and ethics.

They may also need some specific skills such as how to run a focus group or how to interview persons, which will depend upon the research methodology.

Finally, the researchers need to understand the diversities of their own marginalisation. For example, in Emancipatory Disability Research, persons with disabilities need to understand the diversity of ways in which barriers affect them because of their different disabilities. Some of the barriers faced by a blind person will be very different from the barriers faced a wheel-chair user, while other barriers may be similar. Thus, I feel that it is important for the researchers to be aware of their own differences, acknowledge their own negative attitudes and learn to be inclusive.

Support Staff for the Emancipatory Research

The researchers selected from the marginalised groups will need a support system to carry out the research.

The most important figure among the support staff is that of a reporter – the person who will accompany each step and document all the research process. ER is almost always a qualitative research during which people talk, share stories and experiences. The reporter has to document all these discussions. Persons with research experience and background in areas like sociology, anthropology, nursing or humanities can be good at it.

Depending upon the research methodology, the ER process may need contributions from a statistician for the analysis of any data collected during the research.

Other support staff will be needed to organise the different research activities such as the organisation of meetings, group discussions, interviews and visits to the field. For example, researchers may need accessible transport services and accessible meeting venues. They may need materials in Braille or a sign language interpreter.

EDR also requires a group of committed experts including academic researchers who agree to follow the research and support the researchers during the different phases of the process.

To Conclude

Planning an ER requires committed research professionals who are willing to put themselves in supporting roles and give space to marginalised persons to think about and understand their own issues.

A perfect ER in which a group of marginalised persons completely controls all aspects of the research is an ideal – it is very difficult to achieve but we need to strive for it by constantly questioning ourselves and forcing ourselves to keeping quiet and listening, instead of intervening.

In my next posts, I will share information about my experiences in different ER initiatives.

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#planningemancipatoryresearch #disabilityresearch #emancipatoryresearch #edr