When disability is an ability

18 July 2014 04:50 am - 0     - {{hitsCtrl.values.hits}}

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reat maestros who marked a revolution in the thinking patterns of people were not only great but were extraordinary.
Beethoven mesmerised massive audiences with his evergreen pieces of piano sonata such as Appassionata and Waldstein.

Next, the Einstein’s Era diverted the people’s attention to physics and his Theory of Relativity. This was followed by the quadruple reign of Roosevelt and his mission in politics.

However, in the 21st century, Tom Cruise and his MI episodes have made him a celebrity prince.

Despite these trailblasing achievements, they were similar in one aspect. That is, they all had an impairment which developed early or later in their lives. Yet from then to now, there has been a drastic change in responding to the needs of the disabled people and we will look at some striking downturns in various dimensions.



Inclusion and Respite care
It has been observed that over the years, although there have been many institutions and laws being enforced in favour of disabled persons, only a handful had been operated which were anyway ineffective.

On speaking at the workshop on creating a community for the disabled persons, organised by the SLMA in celebration of the 127th International Medical Congress, Dr. Roshini Pieris-John mentioned that one major factor of such injustice was due to the lack of inclusion of disabled persons into the society.

Many disabled persons originate from low-income families and are underestimated as a group who are unable to do any work and left to live on their own.

She stated that there were three issues that affected disabled persons of low-resource countries namely, poverty, invisibility and investment in segregated programmes.

As a result of such irresponsible acts, disabled persons are two times more likely to be denied and four times more likely to be treated badly in a social context. As a developing country, Sri Lanka needs to address these issues when representing global platforms.

Silencing on such factors would gradually keep these communities invisible and left out for the rest of their lives.

Dr. Pieris moved on to mention the availability of facilities such as Respite Care in other countries such as New Zealand.

By definition, Respite Care is the provision of short-term, temporary relief to those who give care to family members who might otherwise need permanent placement in a facility outside the home. The urgency lies in discussing these issues and paying more attention to what the caregivers of these disabled persons have to say about their requirements. The more silence the authorities reflect, the more silent will be the urges of these victims.

The statistics show a dearth of trained personnel specialised in rehabilitation and also an unavailability of physiotherapists. Reflecting on the unmet needs of the disabled ..the system is poorly organised. There is no availability of a walk-in system...




Tokenism and its dangers
Another eye-opener was the issue of tokenism and its disadvantageous effects on disabled people.

Speaking on the topic ‘Nothing about us without us’, Mr. Ishan Jalil highlighted the challenges faced by the disabled communities and the emergence of tokenism.
Mr. Ishan Jalil is a Global Youth Ambassador, a UN Volunteer and a State-Department Alumni. Being a visually impaired individual by birth, he is the best example to highlight the fact that disability is not an inability. Mr. Jalil has traversed across borders to address issues faced by disabled people and educate the public on what needs to be done in order to place them as a part of society.

He elaborated on how differently-abled persons are ‘used’ in developed countries such as the USA to promote Corporate Social Responsibility (CSR) projects conducted by global trade giants.

In this way, while ‘publishing’ a positive image in terms of their CSR they are degrading the capabilities of the disabled.

This token effort is usually intended to create an appearance of inclusiveness and deflect accusations of discrimination. Therefore, disabled people are treated as objects rather than as subjects.

As a result of this token concept, disabled persons have been ‘labelled’ as ‘Pro-disabled employers’.

Mr. Jalil concluded his remarks by stating that disabled people should be empowered and not activated. Tokenism is not participation, rather it is a tool produced for the benefit of the implementers.

Disabled people are not willing to consider their disability as an inability as long as the respective people involved treat them as normal. In his final message he stated, “I am a part of the main society and I also had my share of challenges. Give us the opportunity to move forward. Disability is not inability.”



The Striking Statistics
In a survey carried out within the Moneragala District, a disability rate of 1.6% was observed. A majority of people living in the District were living with a physical disability mainly due to road accidents and as a result of injuries acquired during the war.

The number of hospital admissions too, have significantly increased over the past few years.

The few possible problems included lack of space and equipment, lack of trained professionals, lack of accessible facilities and research. With the Ragama Hospital being the only tertiary level hospital in the island with 270 beds it is observed that there is a lack of resources and that these services have been neglected over the years.

On a clinician’s perspective, Dr. Padma Gunarathne stressed on the fact that 14 per cent of the households in Sri Lanka had a member with a disability or a chronic illness.

The tabulations in the graphic (above) emphasise the statistics on the growing elderly population, the provincial cardre and availability of trained professionals, the availability of resource personnel islandwide and the number of medical students certified by the PGIM respectively:

By 2018/2019 there’ll be specialists in Medical Rehabilitation
The statistics (Charts) show a dearth of trained personnel specialised in rehabilitation and also an unavailability of physiotherapists. Reflecting on the unmet needs of the disabled persons it was revealed that the system is poorly organised. There is no availability of a walk-in system and when disabled people reach the necessary places they are often overcrowded and there is a lack of encouragement.

The non-availability of a caregiver has been observed as another barrier in communicating with the target community.



 The 3 ‘I’s
A solution to the above mentioned problems can only be ‘invented’ through research. However an ideal pathway to approach disabled persons was suggested which include:

  • Identification
  • Intervention
  • Inclusion in communities
     


Disabled people are not willing to consider their disability as an inability as long as the respective people involved treat them as normal. In his final message he stated, “I am a part of the main society and I also had my share of challenges. Give us the opportunity to move forward.



According to Dr. Samanmali Sumanasena, the above 3 ‘I’s method would be a comprehensive approach since it methodologically approaches a disabled person.
Dr. Samanmali Sumanasena is a Consultant Paediatrician and a Senior Lecturer on Disability Studies at the University of Kelaniya.
In certain instances parents of disabled children do not want to admit that their child is disabled. This has left relatively negligible statistics on the prevalence of disabilities in Sri Lanka although global estimates reach between 10-13%. An effective identification method would be through early screening.
Early screening places the child in a less-risk situation since the age between 0-5 years is the most essential period for learning. It is vital that the child is given the best care and practice if a disability is detected.

However, the major decision lies in the hands of the parents if the child is not in a position to decide. Dr. Sumanasena further emphasised that the parents should be encouraged first by briefing them on the positive outcomes.

Next, the context in which the child would be placed should be considered and at all times it should be child-friendly. It is understood that a child is a burden to a family and a child with a disability is a double burden. Therefore, it is in the hands of the parents or the caregivers to allow the necessary authorities to offer their services for the betterment of the child’s future.



Inclusive Education
Disabled children should acquire a similar knowledge as normal children, yet there are many restrictions to this concept. Inclusive education involves children with and without disabilities interacting and learning study material in the same setting. This helps to build friendships, relationships, enhance peer modelling and most importantly allows all children to feel that they belong to the same group as others.

It also helps other children practise helping their peers and makes them participate in meaningful ways. Children will also develop a positive understanding of themselves and they will be able to learn important academic skills. Inclusive education is a child’s right and not a privilege. The Convention on the Rights of Persons with Disabilities (CRPD) adopts a broad categorisation of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.

On the contrary, due to lack of trained teachers, inclusive education cannot be entertained in Sri Lanka in the near future. However, if an effort can be put in and if the current education system could implement strategies to include inclusive education in all schools, it would introduce a remarkable change to the lives of many.



As a result of such irresponsible acts, disabled persons are two times  more likely to be denied and four times more likely to be treated badly  in a social context. As a developing country, Sri Lanka needs to address  these issues when representing global platforms.





The Way Forward
It is questionable as to why there are many medical students passing out from institutions yet there is a dearth of trained personnel in the health sector. Many fly abroad to be employed since they are unaware of the current situation in the country. There are ample vacancies for specialists and other trained professionals yet they are not encouraged to engage in local practice due to reasons such as inadequate remunerations, lack of facilities and settings in which they have to work. Furthermore, it has been observed that these misconceptions have emerged due to the carelessness of the various authorities involved. Since authority figures are more interested in numbers than in the well-being of their people, it is indeed difficult to convince them. A proposal was brought forward to draft a Service Directory for Assistive Devices which would be a useful source when collecting assistive devices for those in need. In this way, there would be reliable information from around the island.

It was also suggested that hospital services should be linked with the community and this in turn would keep the community updated on the latest advancements of the health sector and reduce any complications or doubts being formed. In conclusion, it is important to note that health is a treasure to any individual and therefore, disabled people should be treated equally and should be given the necessary treatments to bring them back to normality.

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