My elder brother, James, who was born in 1943 with a genetic chromosomal abnormality, Down syndrome, and who had a severe learning disability, died in 1999 in the UK as a result of 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 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 December 3.
This date, therefore, has special significance for me, because, in most countries of the world, December 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 41 years old, with a similar disability.
Having been responsible, in 1990/91 for 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.
The rights of the disabled are always at the bottom of most governments’ budget plans, and so, I can only stress that much more work has to be done.
Having said that, I am very pleased to see that the government in Bangladesh is taking a closer interest in the difficulties faced by persons with disabilities and that the Disability Welfare Act 2001 has now been amended and strengthened in Parliament through the Disability Rights and Protection Act, 2013.
I have worked with many friends in Bangladesh and elsewhere who have disabilities, and I try to focus on the person and not on the disability
I have worked with many friends in Bangladesh and elsewhere who have disabilities, and I try to focus on the person and not on the disability and hopefully what I write below will help government ministers and government 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 dos and don’ts will enrich the lives of those who read them and some of the millions of people with disabilities in Bangladesh.
1. Don’t treat a person with one disability as if she/he is disabled in other ways.
2. Don’t focus on a person’s disability, focus on the person.
3. Do ask if you can help and how to help. Don’t be shy for the disabled person may also be shy about asking.
4. Don’t say “I wouldn’t try that if I were you.”
5. Don’t show pity and say, “I don’t know how you manage; I’d die if I couldn’t walk.”
6. Do treat children with disabilities as normally as possible, including not allowing them to misbehave.
7. Do identify yourself straightaway. A blind person can’t always place you by a “hello.”
8. Do make a special effort to remember the name of a person who is blind.
9. Don’t feel shy about saying things like “nice to see you” to a blind person.
10. Don’t grab a blind person’s arm unexpectedly.
11. Don’t say “here’s a step.” Say: “Step up” or “step down.”
12. Don’t leave doors half open.
13. Don’t exclude a blind person from television.
14. Don’t exclude a blind friend from outdoor activities.
15. Don’t chase a child away from a person with a learning disability.
16. Don’t be afraid of a person with a learning disability. Very few are violent and if they are among people, you can assume that they are not violent.
17. Do be honest and keep promises. Don’t assume that a person with a learning disability doesn’t understand or remember what you’ve said.
18. Do take time to listen to someone who is mentally ill; don’t assume that she/he has no knowledge or opinions of value.
19. Don’t express pity for parents of “retarded” children.
20. Don’t give advice, except to point someone in the direction of professional help if none is being given and some help seems necessary.
21. Do remember that any practical help you offer may need to be given for a long period.
22. Don’t tell a person who is mentally ill to “pull themselves together.”
23. Don’t grab hold of a wheelchair without being asked. The occupant can easily be thrown out by an inexpert enthusiast.
24. Do check with the person in the wheelchair if the speed you are pushing her/him at is comfortable.
25. Don’t lift the chair by the armrests -- they’ll probably come out in your hands
26. Do chat to a person in a stationary wheelchair with your head on the same level.
27. Do ask her/him how to get a wheelchair up or down a flight of stairs.
28. Do keep your face clearly visible when talking to a deaf person. Face the light. Don’t move around -- your deaf friend will miss words each time you turn your face.
29. Do not distort your face exaggeratedly to “help” a lip-reader.
30. Do bear in mind that someone who is deaf may be nervous of going out in the dark. Already denied one sense, she/he may be uneasy about being deprived of another.
31. Don’t remain silent if you can’t make out what a deaf person is trying to say, or if her/his hearing aid is making a whistling noise. Be frank.
32. Don’t condescend.
33. Do play music. People who are deaf can “hear” the beat through the vibrations. Deaf teenagers love records and dancing at discos.
Julian Francis has, since the War of Liberation, had a long association with Bangladesh working in many poverty alleviation projects, and has contributed to many programs to improve the lives of people with disabilities.
