Disabled doesn’t translate to unable:

Think differently abled

by Carol Aloysius

The surge in road and home accidents along with falls, arthritic ailments, vision and hearing loss, and brain damage, which have also spiked due to Sri Lanka’s rapidly aging population, has all meant that the number of persons with disabilities in Sri Lanka has soared phenomenally in recent years. Though many continue to contribute in a meaningful manner to society despite their disabilities, the stigma of being disabled, dogs their every move as much as the physical barriers that prevent them from participating in activities normal persons do.

On International Day of Disabled Persons (IDDP) which fell on December 3, several organisations worldwide came together to dislodge those barriers by promoting better understanding of disability issues, including their right to be treated as equals and the importance of integrating the disabled into all aspects of society - cultural, economic and social - by giving them the opportunity and choice to do so.

While the focus has been mainly on adult disability, at least one non-governmental organisation, the Cerebral Palsy Lanka Foundation (CPLF) Sri Lanka, has tried to improve the lives of children who are prevented from participating in outdoor activities because of a lack of proper facilities. To this end, CPLF has devised wheel chair swings in the kiddies section of at least three public parks in the city. Here, Chartered Physiotherapist and Chairman of the CPLF, Dr Gopi Kitnasamy, who is also a father of a child with CP, and has been spearheading innovative ways of helping his patients young and old who suffer from various forms of disabilities discusses some of the most pressing issues related to disability and how they can be overcome.

Excerpts…

Q: Disability is a complex term. How do you interpret it?

A: Many people think the term ‘Disability’, only refers to people using a wheelchair or walker or has some physical disability that makes him/her seem weaker or less important in the eyes of those without such disabilities. But this is a misconception.

The term is used to refer to individual functioning, including physical impairment, sensory impairment, cognitive impairment, intellectual impairment mental illness, and various types of chronic disease. A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults.

Q: You referred to physical, mental and intellectual disabilities. Are they the different categories under which disabilities fall?

A: ‘Disability’ can be broken down into a number of broad sub-categories, such as:

Mobility and Physical Impairments:

This category of disability includes people with varying types of physical disabilities including:

Upper limb(s) disability
Lower limb(s) disability
Manual dexterity

Disability in co-ordination with different organs of the body

Disability in mobility can be either an in-born or acquired with age problem. It could also be the effect of a disease. People who have a broken bone also fall into this category of disability.

b) Spinal Cord Disability:

Spinal cord injury (SCI) can sometimes lead to lifelong disabilities. This kind of injury mostly occurs due to severe accidents. The injury can be either complete or incomplete. In an incomplete injury, the messages conveyed by the spinal cord are not completely lost.

Whereas a complete injury results in a total dys-functioning of the sensory organs. In some cases spinal cord disability can be a birth defect.

c) Head Injuries - Brain Disability:

A disability in the brain occurs due to a brain injury. The magnitude of the brain injury can range from mild, moderate and severe. There are two types of brain injuries:

Acquired Brain Injury (ABI)
Traumatic Brain Injury (TBI)

ABI is not a hereditary type defect but is the degeneration that occurs after birth. TBI results in emotional dysfunctioning and behavioral disturbance.

d) Vision Disability:

Thousands of people suffer from minor to various serious vision disability or impairments. Eye injuries can also result in blindness and ocular trauma, while chronic diseases like diabetes can also result in vision loss.

e) Hearing Disability:

Hearing disabilities includes people that are completely or partially deaf. Deafness can be evident at birth or occur later in life from several biologic causes, for example meningitis can damage the auditory nerve or the cochlea.

f) Cognitive or Learning Disabilities:

Cognitive Disabilities are kind of impairment present in people who are suffering from dyslexia and various other learning difficulties and includes speech disorders.

f) Psychological Disorders. These include the following:

Affective Disorders: Disorders of mood or feeling states either short or long term.

Mental Health Impairment is the term used to describe people who have experienced psychiatric problems or illness such as:

Personality Disorders - Defined as deeply inadequate patterns of behavior and thought of sufficient severity to cause significant impairment to day-to-day activities.

Schizophrenia: A mental disorder characterized by disturbances of thinking, mood, and behavior.

Q: Do all disabilities show visible outer symptoms?

A: There is in addition a group we refer to as Invisible Disabilities. Invisible Disabilities are disabilities that are not immediately apparent to others. The term invisible disabilities refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities and vary from person to person. For example, some people with visual or auditory disabilities, who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Most people with (Repetitive Strain Injuries) RSI move in a ‘normal’ and inconspicuous way, and are even encouraged by the medical community to be as active as possible, including playing sports. Yet those patients can have dramatic limitations in how much they can type, write or how long they can hold a phone or other objects in their hands. In addition there are ‘Hidden Disabilities’.

Q: Examples of ‘Hidden disabilities’?

A: Psychiatric Disabilities such as major depression, bipolar disorder, schizophrenia and anxiety disorders, post-traumatic stress disorder. Traumatic Brain Injury, Epilepsy, HIV/AIDS, Diabetes, Chronic Fatigue Syndrome, Cystic Fibrosis, Attention Deficit-Disorder or Attention-Deficit/Hyperactivity Disorder (ADD/ADHD) Learning Disabilities (LD)

Q: How are they treated?

A: Depending on their medical conditions, most of them need to be controlled and treated with medications and other therapeutic interventions.

Q: Historically, disabilities have often been cast in a negative light. Your comments?

A: Over the past 20 years, a competing view known as the social model of disability has come to the fore. In this model, disability is seen more as a social construction than a medical reality. An individual may be impaired by a condition that requires daily living adaptations, but the bulk of his problem - his disability - can be found in the attitudinal and physical barriers erected by society.

Q: Do both models agree at some point?

A: Both the medical and social models agree, to a point, that facilities and opportunities should be made as accessible as possible to individuals who require adaptations. Dismantling physical barriers, or setting up adaptations such as wheelchair ramps, are known as “fostering accessibility”.

Q: How relevant is this year’s theme for International Day of Persons with Disability to the current needs of all persons living with disabilities?

A: This year’s theme ‘Inclusion matters: access and empowerment of people of all abilities’ is very significant considering that more such persons are taking an active role in almost every aspect of society. Yet barriers they face to inclusion in these key aspects of society , has resulted in one billion persons worldwide and in Sri Lanka not being able to enjoy access to society on an equal basis with others, such as transportation, employment, education as well as social and political participation. The key solution is empowering them, investing in people irrespective of whether they are disabled or not in jobs, health, nutrition, education, and social protection.

Q: It is estimated that by 2050, 66% of the world’s population will be living in cities. The idea of setting up Megacities in South Asia is under consideration. In this light how can we ensure that those with disabilities are not left out when these future cities are built?

A: By ensuring their basic urban infrastructures and services are more environmentally accessible, user-friendly and inclusive of all people’s needs, including persons with disabilities Design of products, devices, services, or environments must also include the needs of people with disabilities. In other words, create products usable in the widest range of situations, by everyone - whether they have a disability or not.

Q: Currently there is a lack of disability data and statistics worldwide and in Sri Lanka. How has this lack impacted on people with disabilities? Is there a move to bridge this gap?

A: The lack of data and information on disability and the situation of persons with disabilities at the national level contribute to the invisibility of persons with disabilities in official statistics.

This presents a major obstacle to achieving development planning and implementation that is inclusive of persons with disabilities. The International Day will be used to highlight measures to strengthen national capacities to improve and mainstream disability data collection, based on existing good practices.

Q.Your message?

A. People often judge others by what they see and often conclude a person can or cannot do something by the way they look. The bottom line is that everyone is different, with varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes.