\

WORDS ABRAHAM MATHEW SAJI

There are seven- and-a-half billion people in the world – with differing characters, skills and abilities. A staggering 15 percent of this global population are disabled, with 80 percent of them living in developing countries.

These figures are on the rise due to increased lifespan, increase in chronic lifestyle disorders and limited support. Unfortunately, there is still a negative attitude toward those who are disabled (perhaps better described as “differently abled”) due to discrimination.And these negative perceptions create barriers that deny equality and inclusiveness towards this population.

Since 1992, the United Nations has been observing December 3rd as a day to honour, respect and acknowledge those with disabilities. The theme for International Day of Persons with Disabilities (IDPD) this year is “Empowering persons with disabilities and ensuring inclusiveness and equality”.

According to the International Classification of Functioning, Disability and Health (ICF), disability is the interaction between individuals with an impaired function or health condition and environmental factors like discrimination or negative attitudes towards them. Disabilities can be of different types and severity, which affects one or more functions of vision, hearing, physical, speech and cognitive including mental and learning abilities.

Among the various impaired abilities, the most common disorder – causing cognitive, intellectual, growth and cardiac complications – is Down syndrome.

THE EXTRA CHROMOSOME

Also known as Down’s syndrome, the condition is named after the person who discovered it – British physician John Langdon Down. It occurs when a baby is born with an extra copy of the 21st chromosome. Every cell in our body contains 23 pairs of chromosomes; half received from each parent. A baby born with Down syndrome has an extra copy of chromosome 21, which means he or she has three copies instead of the normal two. This extra chromosome causes developmental deformities in the brain and other areas of the body. Most of the deformities are lifelong and capable of reducing life expectancy.

• Inheritance of genetic translocation from a parent
• Family history
• Earlier pregnancy with Down syndrome or other cognitive abnormalities
• Age of the mother

While the age of both parents are contributing factors, the higher risk is from maternal age, as can be seen from the table below (data from a Swedish study by Hook E.B.):

Other than these, there is no scientific evidence that Down syndrome is caused by any environmental factors or by the parents’ activities or lifestyles before or during pregnancy.

SCREENING, SIGNS AND COMPLICATIONS

With advances in medical technology, it is possible to detect the likelihood of carrying a baby with Down syndrome during pregnancy. Ultrasound and blood tests can help to detect the problem to  some extent. Some additional prenatal tests to confirm the diagnosis are:

• Amniocentesis – a sample of the amniotic fluid is tested for the number of chromosomes
• Chorionic villus sampling – cells from the placenta are examined for the number of chromosomes
• Percutaneous umbilical blood sampling – blood from the umbilical cord is examined for the number of chromosomes

However, some parents prefer to avoid these tests due to the associated risk of miscarriage.

Not every baby with Down syndrome will have all of the following characteristics, but the common observable physical signs may include:

• Upward slant of the eyes
• Flat face
• Short neck
• Abnormally shaped ears
• Bulging tongue
• White spots on the iris of the eyes (also known as Brushfield spots)
• Single deep crease across the palm of the hand
• Broad hand
• Short fingers and a wide gap between the first and second toes
• Late development of teeth, fewer teeth, irregular in sequence and with gaps between them

Additionally, there may also be an increased risk of neurological problems (epilepsy, memory and behavioural problems), endocrine problems (thyroidism and diabetes), cardiovascular problems (atrial and ventricular septal defects), gastrointestinal problems (duodenal, esophageal and anal atresia) and haematological problems (leukemia).

An infant with Down syndrome may be born average sized but have slower cognitive development. A child may exhibit impulsive behavior, short attention span, slow learning capabilities and poor judgement. They are also more prone to infections and can easily contract skin, urinary tract and respiratory infections which do not heal easily.

LIVING WITH DOWN SYNDROME

Despite the grim list of possible complications and shortcomings, the outlook is not all bleak. With support and education programmes and access to quality healthcare, many people with Down syndrome are able to lead relatively independent lives. There is a wide variety of intervention and occupational therapy programmes to assist with various aspects such as sensory skills, motor skills, social skills, behavioural skills, speech and language and other cognitive abilities. These programmes can enable the child to achieve his or her maximum developmental potential, learn to communicate and be productive. Medical advances have increased the average lifespan of an individual with Down syndrome to about 55 years today; a great improvement from 20+ years just a few decades ago.

THE ROAD AHEAD

Let us keep December 3rd in mind and come together as a community to acknowledge and enable the disabled by helping to develop and foster a more inclusive environment for them. To date, they still need better access to education, focused skill or vocational training to prepare them for employment, improved healthcare facilities, better rehabilitation services, more recreational opportunities and less discrimination.

We can work closely with both governmental and non-governmental bodies to implement policies related to the wellbeing of the disabled, and promote and raise the level of awareness among the public.

Franklin D. Roosevelt, the famous American president who helped guide the United States of America successfully through World War II, was a wheelchair user during his entire term in office. He had contracted what was believed to be polio from drinking water at a campground during the start of his political career. The condition caused him to be paralyzed from the waist down. But he did not let that disability become an impediment to his career. He proved to the world that he was differently abled and till today is recognized as one of the top world leaders.

I would like to end with a quote from  Neil  Marcus, an American actor and playwright who is active in the development of disability culture: “Disability is not a brave struggle or ‘courage in the face of adversity’. Disability is an art. It is an ingenious way to live.”  HT

If you like this article, do subscribe here.