Disability studies in the universities

(Excerpted from Memories that linger – my journey in the world of disability by Padmani Mendis)

Prof. Chandra Gunawardene was the Dean of the Faculty of Education at the Open University of Sri Lanka, OUSL, at the turn of the century. I was recommended to her by her friend Prof. Swarna Wijetunge who had been a Professor of Education at the University of Colombo. Prof. Wijetunge was a member of the National Education Commission. She had always been sensitive to the poor quality of education available to disabled children. Prof. Gunawardene was keen to take action to uplift this through improvement in teacher education.

So she obtained the approval of the OUSL in 2004 to set up within the Open University a Department of Special Needs Education. She asked for my help to do this and had me recruited to the Faculty as a Senior Consultant. I set about getting the preliminary arrangements done. Meanwhile she also recruited to the Department of Special Needs Education two senior lecturers. She arranged for these two to proceed directly to the University of Lahore and return with their Doctoral Degrees to start academic activity in the Department. One of the first such activities was a Bachelor of Education Honours in Special Needs.

University of Colombo

The University of Colombo, since 2009 was running an “Ability Centre for Students with Disabilities”. It was helping students in a small way. Ashoka Weerawardena was running this centre.

Aloka Weerasekera had in 2012 obtained a degree from the Faculty. Aloka, as a student, had helped the Faculty and his disabled colleagues within it, to deal with the some of the problems they faced. And even after he graduated he continued to help Ashoka at the Ability Centre.

A new dean, Prof. Athula Ranasinghe, was appointed to the Faculty of Arts in 2011. He proposed that it was time that the Faculty demonstrated greater academic leadership in disability. Aloka and I were brought in to join the staff of the Department of Sociology on a planning committee to find a strategy for putting into practice this academic support for disability.

The end result of the planning committee’s deliberations was the setting up in 2014 of the Centre for Disability Research, Education and Practice popularly called CEDREP.

In the same year the US Embassy came in with a grant to finance improvements to the Ability Centre for the benefit of students. This Centre was upgraded and had its role and name changed to the “Support Centre for Students with Disabilities”. I was a frequent visitor to assist Ashoka with what I could. CEDREP called on me for advice in the early years when they needed it.

Disabled People to the Forefront

A significant outcome of CBR at the grass roots was the setting up of disability self-help groups. Fridsro helped in this in the government-supported CBR areas throughout the island. Unfortunately, government workers later made these into District Disability Organisations over which they could and did have influence. As was to be expected, the autonomy within the small self-groups was gone. Many disabled people who had been empowered through their self-help group were disillusioned and turned away.

Others, such as Nishar Sharif, persist even today, raising the issue of their rights and their inclusion within the district and province. Navajeevana encouraged the formation of self-help groups in the CBR areas they supported. These also developed into Divisional Disability Organisations. I have met some on my visits to the south. Although they are sustained with some financial support from Christoffel Blinden Mission, CBM, they maintain their autonomy and empowerment and participate in area development planning and activities.

In Sri Lanka there has not even until now been any kind of Disability Movement. In Colombo personable individuals set up organisations to publicise the needs of particular disability groups. Occasionally they would obtain sponsorship to implement interventions. Some have been led by disabled people themselves and others have not. There was debate about these at the time. Within the world of disability, it was felt that the organisation had to be managed by disabled people themselves to be recognised as a Disabled Peoples’ Organization (DPO). If it was managed by a non-disabled person or people, then it was thought of as an NGO.

S. L. Hettiarachchi

So the Sri Lanka Council for the Blind (SLCB) which was actually single-handedly run by S. L. Hettiarachchi, himself with visual impairment and totally unable to see, was considered to be an NGO. Its president, although only in a nominal role, was not disabled. Soon after I started working with the School of Social Work, I met Mr. Hettiarachchi. I used to meet him often thereafter for a chat in his office. We developed a close life-long friendship until he passed away in 2015.

With Mr. Hettiarachchi in the driving seat, the SLCB carried out many activities for young people – particularly, courses which imparted skills and knowledge scarce elsewhere such as in Mobility and Orientation and Information Technology. On a Saturday morning I would often drop in for a chat with the young people there.

What impressed me most was the Library the SLCB developed with an extensive collection of both written and audio publications made easily accessible to the many who availed of its resources. Mr. Hettiarachchi then extended the library to the thirteen Special Schools for the Blind located throughout the island and were registered with the Ministry of Education. He later sought and obtained support for this from Sight Savers International, SSI.

Three years later SSI requested me to evaluate the impact of their support to benefit children. One of the most interesting findings regarding project’s impact was the children’s increased love of reading. Many had become avid readers. Many had taken to reading a new book every two to three days. Many had shown improvement in language development, reading and writing skills, grammar, vocabulary and verbalisation. It strengthened my belief that it was the SLCB, as organisations were at the time, that had the greatest impact on disabled people.

Premadasa Dissanayake and Cyril Siriwardene

Another disabled person with whom I shared both a working relationship and friendship was Premadasa Dissanayake. Premadasa hailed from a village in Badulla in the Uva province. He came to Colombo as a wheel-chair user to seek employment. This he got at the Gangarama Temple in Colombo, first learning the skill of watch repair and then as a teacher of other young people both those who had disabilities and others who had not, to acquire the same skill.

He never forgot his roots and later, when he was able to implement field programmes, they were located around the village he came from. He impressed others with his honesty, diligence and hard work.

Premadasa was the core of the, Sri Lanka Foundation for Rehabilitation of the Disabled (SLFRD), which he established with support. Within this, he had soon set up a workshop to produce a range of appliances required by people with mobility impairments – wheelchairs, tricycles, crutches and so on. This workshop called Rehab Lanka bid for and obtained tenders for these and was a regular supplier to both the Ministry in Colombo and to Departments of Social Services in the provinces.

With funding from the Swedish Organisation of the Handicapped International Aid Foundation, he moved into community-based work. I enjoyed very much walking the villages in Badulla with his staff.

Such was the recognition Premadasa had that one of Sri Lanka’s leading garment manufacturers negotiated an agreement between Rehab Lanka and Marks and Spencer popularly known as M & S, the well-known chain of retail stores in the UK. Premadasa trained workers of the garment factory to produce the items they made for M & S. Training was done according to the technical and quality requirements as stated in the agreement between M & S and Rehab Lanka.

Working with Premadasa at Rehab Lanka was Cyril Siriwardene. Cyril had started using a wheelchair since he had met with a road traffic accident while serving in the Air Force. With his assertive but pleasant personality and skilled use of the English Language Cyril was soon recognised as a leader and disability spokesperson both by disabled people and by others.

It was Cyril, Premadasa and Mr. Hettiarachchi that established a dialogue with the Ministry of Social Welfare. This was the time that Viji Jegarasasingham (Mrs. J) had come to the Ministry as an Additional Secretary. She was open to it.

Ministry of Social Welfare

The Ministry of Social Welfare and disability groups soon had a regular conversation. An outcome of this was that in 1996 the first Disability Law was passed. This law was concerned mostly with the setting up of a National Council for Persons with Disabilities (NCPD), and with strengthening the provision of disability services within government. The NCPD was of course to be chaired by the Minister of Social Welfare.

As a positive step, the law ensured a majority participation of disabled people and their representatives in the NCPD, recognising their right to decision making in matters that affected them.

Recognising this in law but not, unfortunately, in practice. It is still the Ministry of Social Welfare that makes all decisions in the field of disability. Even in the making of a new law, a seemingly continuous process started in the year 2004 and is as yet incomplete.

I was not aware of the preparation or enactment of that law in 1996. Maybe I was too concerned with international work at that time. I served however on two consecutive National Councils, the first of which was set up as soon as the law came into effect in 1996.

My experience was that we did not really do anything to bring about changes in the lives of disabled persons and their families. Much of the monthly meetings dealt with acceding to requests by disability organisations and disabled people for financial assistance for a range of purposes from renovating buildings to organising sports events to staging concerts by disabled people.

Disability work was still very much based on charity. The disability representation at large on the National Council however appeared to be satisfied sitting with the minister every month and telling him of their woes. A vivid recollection I have of the first council is the minister, while sitting at the head of the long table, tucking in with satisfaction into a bowl of fruit salad. I must also say that to me he seemed not even to listen to what was being said.

National Policy on Disability

At the beginning of this decade there was some visible activity in the Ministry of Social Welfare as it concerned the world of disability. A newly introduced government regulation called on each ministry to develop national policies in areas it was mandated for. For our ministry this included disability.

Consulting the few disabled people she interacted with at the time, Mrs. J had appointed a renowned disabled person to make a draft national policy on disability or NPD. Repeated reviews and revisions did not result in a satisfactory document. This was apparently leading to some frustration all round. Mr. Hettiarachchi talked with me about it, and I wrote for him a brief note on how a national policy may be developed. It had to be a participatory and consultative process.

Together with his colleagues he took this to Mrs. J and they suggested she talk with me about it. The result was that she asked me whether I could do this. I said of course, but with two conditions. One was that the ministry appoints a committee to make the task participatory, and the second – you will not believe it – that she appoints me as Chairperson and let me suggest to her the 12 members that should constitute the committee. I knew my Sri Lanka and she obviously knew me.

The Minister was informed, letters of appointment were received and very soon the committee and our support staff were seated round a table at the ministry – not the one I referred to earlier and there was no bowl of fruit salad.

Our committee represented people with the most prevalent disabilities through their organisations, and those sectors that had to be most involved with disability and disabled people. We started our work with reports from them, each related to the area of their particular concern. Followed by discussion about the situations presented and very preliminary policy suggestions.

In spite of the wide representation on our committee one large gap was evident. No one really knew the situation of disabled people and their families in our country. It was my task to inform Mrs. J that we had to determine this through a socio-economic survey before we could go ahead with policy formulation. All she said was, “How much will you need?” It was then my responsibility to bring to her quotations from three sources known for their experience in conducting such tasks.

She selected one and said she would find the money required. This was Rs. 750,000 for an island-wide sample survey. Nielson Sri Lanka completed the report in three months. Together with the Rs. 400 each member was paid by the ministry as transport cost per meeting, the preparation of the NPD cost just over Rs. 900,000. Our committee took joy comparing this to what the formulation of a draft National Employment Policy cost at about the same time – Rs. 13 million. That cost was met by a foreign donor and the policy was never approved.

During the many meetings that followed, we interviewed dozens of persons, both as individuals and as groups. We had Mrs. J arrange for us interviews with secretaries of ministries, heads of institutions and UN and other agencies, DPOs and NGOs with whom we consulted on the content and formulation of the policy. In this way we benefited from the experience and insight of a countless number of people.

When we presented the National Policy on Disability that our committee had produced to the minister who was at the time Ravindra Samaraweera, he asked me why we had taken four months when he had asked for it in three. But he was pleased and soon had it approved by the Cabinet of Ministers.

Those were Sri Lanka’s good times. Now, but precious memories.

Disability Rights Bill (DRB)

The success achieved by her Ministry with the publication of the National Policy appeared to motivate Mrs. J to take this process further. So within a few months she had appointed another committee to ensure legal validity for the Policy. This time I was appointed Chairperson with no notice of it. The four other members of the committee she selected were all attorneys. One also had experienced disability, having had visual impairment from a very young age. He had his wife read out to him at home the documents that the committee had written or typed as text.

Our mandate was to see if the existing law of 1996 was adequate to implement the NPD. And if it was not, to draft a new Disability Rights Bill. Well, that was how the task was stated, but there was no doubt in anyone’s mind that a new Bill was essential. A new law was needed to ensure the fulfilment of the rights of disabled people.

Preparation for drafting this document required a completely different process. As members, we gathered together all published laws in Sri Lanka that had any relevance to our task. We also gathered together laws that had been made by other countries. Then we sat down to reference these and gather precedent information that we could be used for our draft bill. We also sought the help of many individuals to advise us on sections of the draft.

On completing a preliminary draft, we had the ministry translate it for us into Sinhala and Tamil and opened these to the general public. This preliminary draft was amended with the feedback received. The first draft Disability Rights Bill (2006) was submitted to cabinet for approval as was required at the time. Mrs. J was happy to inform us when approval was received within two weeks.

She asked us whether the committee would continue to help the ministry get the draft through the Legal Draftsman’s Department, which we did with negotiations and simple compromise. We continued to help the Ministry with the next step, which was the Attorney General’s Department.

Here we met our first obstacle. This was the attorney rather junior at the time, tasked with the review and approval of it. We never got it past her. I see that attorney is still in the department, now almost at the top. Well, sad to say, that Bill is still a draft.

Later in 2009, the whole process changed completely. This was when a new Minister came in. He had the bill redrafted by an individual whose name is unknown to this date. Politicisation was in force. Numerous revisions and drafts have been made since then, and the process is even now ongoing. My personal view is that the ministry fears that with a new bill, it will lose control over disabled people and over disability. So, no new Disability Rights Law.

Sad, sad Sri Lanka. Sad for the situation of our disabled people whose rights are yet to be recognised in Law.