My elder brother, James, who was born in 1943 with a genetic chromosomal abnormality known as Down Syndrome, and who had a severe learning disability, died in 1999 in the UK as a result of other people’s negligence. He died of bronchial pneumonia because doctors who were treating him did not take the time and trouble to find out exactly what was wrong with him. He had been suffering with diarrhoea and they treated him for that without properly examining him at the residential care home in which he lived.
He died because he was unable to communicate with the doctors and his carers supposedly trained to look after people with such difficulties. His birthday, which he always celebrated with a lot of fun and laughter among friends, even going to a local pub for a drink, was Dec 3. This date, therefore, has special significance for me and my sisters, because, in most countries of the world, Dec 3 is observed as the International Day of Persons with Disabilities.
It is only right to ask ourselves if we ever take time to understand the problems, the challenges, the feelings and the aspirations of those people who live among us who, as a result of a disability or disabilities, find their lives more difficult to handle than most of us. When we meet people with disabilities, due to our lack of knowledge, we often feel awkward and embarrassed as we do not know how to react, what to do, or what to say. I am writing down some practical advice which may help in the understanding of how people with disabilities feel. I draw on my own personal experience of growing up with a brother with a severe learning disability and later in life having a son, now 50 years old, with a similar disability. These experiences and knowing many other people with disabilities who have become close personal friends, have enriched my life and my work.
Having assisted, in 1990-91, in putting together the first preliminary draft of Bangladesh’s National Disability Policy, and having seen how slowly it made progress, I am well aware of how officialdom looks at the problems of the disabled. Although, 44 years ago, 1981 was observed as the International Year of Disabled Persons, the rights of persons with disabilities have always tended to be at the bottom of most governments’ budget plans, and so, it can only be stressed that much more work has to be done.
Having said that, I am pleased to see that the government in Bangladesh has been taking a much closer interest in the difficulties faced by persons with disabilities and that the Disability Welfare Act 2001 was amended and strengthened in Parliament through the Disability Rights and Protection Act, 2013. In addition, “Protection of Persons with Neuro-developmental Disability Trust Act, 2013” was also enacted. Significantly, multilateral, bilateral and INGO donors have now adopted the slogans ‘Leave No One Behind’ and ‘Disability Inclusion’. Thirty to 40 years ago all development programmes had to address issues related to women to be accepted by donors. So, very many years later, the rights of people with disabilities are now, at last, recognised!
My work over the years has been enriched by many friends in Bangladesh and elsewhere who have disabilities, and all the time I try to focus on the person and not on the disability and hopefully what I write below – and I first wrote most of these words 38 years ago – will help the Interim Government and other officials better understand what they have to do and how to relate to persons with disabilities. The best advice, however, is that if you do not know how to handle your relationship with a person with a disability, ask him or her for advice. I hope these Do’s and Don’ts will enrich the lives of those who read them and some of the millions of people with disabilities in Bangladesh.
-Don’t treat a person with one disability as if she/he is disabled in other ways. People tend to talk in simple single syllable words to people who use wheelchairs, they shout at the deaf, and often address a blind person through someone else.
-Don’t focus on a person’s disability, focus on the person.
-Do ask if you can help- and how to help-if it looks as if help
