We recently commemorated International Day of Persons with Disabilities, an international observance promoted by the United Nations since 1992. To mark the day we spoke to pioneers in Oman who have made tireless efforts in opening doors and providing opportunities to the differently abled in the country.
To most of you, taking a walk is easy. You just get up and begin to walk, enjoying every step as you stroll contentedly, and going about your daily routine. Walking is a natural body function of which many of us don’t think twice. What we don’t understand is just how lucky we are to have such easy access to something as essential as free, unrestricted movement of our limbs. There are many around the world who are unfortunately not granted the gifts that we are.
One cannot help but be reminded of the words of the great Hollywood actor Anthony Hopkins when he portrayed US President Franklin Delano Roosevelt. Then aged 39, Roosevelt, who saw America through one of its worst phases – the Great Depression and World WarII – contracted polio, leaving him permanently paralysed from the waist down and requiring him to use a wheelchair.
In the Hollywood flick Pearl Harbor, Roosevelt is shown admonishing his council as they fail to come up with constructive solutions to rescue the hundreds of Navy sailors trapped underwater after the Japanese attack on the Hawaiian islands in December, 1941. His stirring speech – which concerns his own disability – seems particularly apt at this moment.
He said, “Most of you did not know me when I had the use of my legs. I was strong, proud and arrogant. Now I wonder every hour of my life why god put me in this chair. But when I see defeat in the eyes of my countrymen, in your eyes now, I start to think that maybe he brought me down for times like these when we all need to be reminded who we truly are. That we will not give up, or give in.”
As a society, it is our responsibility to look after the less fortunate. Although they may not have access to all their faculties, physically and mentally challenged people often have other talents that many of us cannot even fathom.
One of the leaders in this field has been Barka Shahbal Al Bakry, co-founder of the Omani Association for Early Intervention for Children with Disability, and the Al Noor Association for the Blind.
Raised in Mombasa, Kenya, where her father was the President of the Arab Welfare Society in East Africa, her home was a place of transit for people who travelled further into the continent, during a time when aeroplanes were seldom found. They would often spend a couple of days in her home before continuing on their journeys. It was this culture of hospitality in her home that inspire Barka to look after those who needed her help.
“The whole programme around children with disability began with the Omani Women’s Association,” she told T Weekly. “A woman named Raya Al Riyami was aware that there were handicapped children in the houses, and that nobody was helping them. The mothers were left alone with little help, and she came to the association and said they needed to start something for children with disability.
“We began by bringing these children to the association for the first two and then three days a week,” she added. “We had a bus that collected children from various places. It was a small group at first, and Raya with her own money rented an apartment in Madinat Qaboos and started the centre there. People actively brought their children here, so we began going through the formalities of registering with the government and writing by-laws. This was in 1991.
“At that time, there were no programmes for disability, so we took a villa in Qurum and the children were coming,” said Barka. “We decided to concentrate on children between the ages of six and 14, and then, the government began a vocational training programme for those above 14. We continued that way until 2000, when mothers with children aged less than six, and mothers at birth were told they had some abnormalities. Usually, the mothers are in a state of shock when they are told this. At that time, I worked for Shatti Hospital, so for one year, we met in a conference room and then we set up the Omani Centre for Early Intervention for Children with Disabilities.”
Barka worked in the country’s UNDP office for 19 years, where she helped develop community programmes and literacy programmes, helping draft the country’s first academic syllabus, and oversaw the development of Oman’s first industrial estates. She was also a UNESCO coordinator who worked with eight of her colleagues at the Ministry of Education, and help set up the Ministry of Environment and Climate Affairs.
All in all, 28 UN organisations coordinated their work through Barka’s office, and she has continued to assist social development efforts across Oman.
“The centre has two programmes – we have the children’s programme for children between three and six, but we also have the pottage programme, for children from birth,” she said. “As soon as the mother gets in touch with us, we assess the child – even at birth – and we take it from there. We visit the mother for the first three years.
“We train the mothers in how to help these children develop,” added Barka. “We give them a form, and every month, they fill in a form, which tells us when the child was able to turn, when they were able to smile, so there is a list of developmental parameters. After three years, we bring them into the centre, and there, they have speech therapy, physiotherapy, gadgets and shoes for those who cannot walk. We have all sort of aids. For example, we have a belt for those who cannot walk.”
It was soon after that, that Barka was asked to spearhead a similar centre for the blind.
The late Rahila Al Riyami who had then retired from the Ministry of Education, called her regarding a centre the blind because until then, visually impaired children were sent to Bahrain, Kuwait or Saudi Arabia. After working out of an apartment in Al Khuwair, Barka and her team eventually found funding for a full-fledged, purpose-built school.
So what’s next for Barka? As a member of the International Association for Volunteering Effort, she is trying to put to together a network of volunteer groups across Oman, ranging from Musandam in the north to Salalah in the south, to share ideas, coordinate efforts and address pressing issues and offer help, wherever it may be required.
“There are many small groups in Sohar, Nizwa, Ibri and so many other places where there are so many NGOs,” she said. “I am trying to pursue the possibility of setting up a network, because today if there is a programme in Nizwa, they could announce it to everyone else. Volunteering is an effort of people who are willing to give without receiving. If you carry a heavy weight with two hands, it is a lot easier to carry it with 10 hands.
“We have small NGOs that exist outside Muscat,” added Barka. “We have Al Wafa Centre in nearly every town. These are centres where children come together and they have a special wing for the disabled children. Then you have the Omani Women’s Associations who use their platform to serve different segments of the society and people with special needs.”
Another key individual in the setting up of welfare facilities for children with disability was Zuweina Al Barwani, one of the founders of the Oman Down Syndrome Association.
Mother of a child who is born with Down Syndrome, Zuweina, like so many others, actively sought services that would help parents of children who had the disorder, and this inspired her to help with the founding of the centre.
“My daughter was supposed to go to a centre for special needs students, but I took her out, because I was not given access to see what they were doing. How could I keep my daughter in a place where I don’t know the organisation, I don’t know the classrooms, I don’t know the teachers, but I was told I could not go in to see them,” she told T Weekly. “Normally, when you take a child to school, you first go in and see the facilities. I was told it was private so other parents might not like it.
“I know that those with special needs may not be like others, but there must be action to help these children as well,” added Zuweina.
“These children have to finish their studies, but unfortunately there are people who feel that these children cannot learn. I know that if I get her a book, she herself will take interest to read and write. After that, I want her to get training, because she is capable. If you are teaching a child to cook but he does not know how to read a recipe, how do you expect her to be independent?
Over in Khoula Hospital, senior occupational therapist Lakshmi Sarkar provides physiotherapy to physically challenged children in Oman. She runs a rehab team consisting of physiotherapists, occupational therapists and counsellors, and says that restoring a person’s normal functions always came first, so that they would regain the confidence to do things to the best of their abilities.
“Once the physical strength is recovered and the joints are free of pain, it does not mean that the person can recover immediately, because they have been in pain for a long time, so the brains and muscles sometimes forget, because cognition needs to be addressed, whatever the function may be,” she said. “This coordination depends on age, whether the person in question is a school-going child, a housewife, or someone who is working in an office.
“Depending on this, we work to bring them back to function. It could be hand functional skills, it could be self-care and mobility, we are bringing all these things back, as well as higher cognitive functions such as judgement, understanding, abstract and lateral thinking, and imagination, because without all this, you cannot function normally,” added Lakshmi. “If you don’t have abstract thinking, for example, then you cannot picture a place you are going to.”
To ensure that disabled people are given non-discriminatory treatment, the United Nations has launched its Convention on the Rights of Persons with Disabilities. They cover eight guiding principles, including the respect for inherent dignity, non-discrimination, fully and effective participation and inclusion in society, respect for difference and acceptance of persons with disabilities are part of human diversity and humanity, equality of opportunity, accessibility, gender equality, and respect for the evolving capacities of children with disability and respect for the right of children with disabilities to preserve their identities.
Lakshmi, who has been working with challenged children for a long time, added that it was important that those who suffered from disabilities were made to feel inclusive, a concept that some people unfortunately are still not able to fully grasp.
“Your entire approach has to be family-centred,” she explained. “A lot of people keep the family out and only work with the patient, but that is not the way. You have to take the whole family into the picture. Let them be around, let them learn, so that the patient gets the motivation to work. In every case, the first stage is a case of denial.
“The second stage is shock, and then comes depression, so we have to handle it accordingly. Sometimes, for example, clients are fed up because they have received so many past misdiagnoses.
“We need to first have a complete assessment of the client,” she said. “Only then can you fathom how motivated the patient is. You have to push the patient, and motivation is really important.
“Once you know where the patient is emotionally, then you have to begin counselling him from that level and uplift him physiologically from there. You have to make them believe that nothing will happen. You have to explain that there are still many things that clients are capable of doing, you have to show them what improvements you will see and which areas you will see it in. You may also see regression, but the important thing is that you report it to the therapist so that we can explain why this happened.”
But a physical understanding of what people with disabilities suffer from is not going to always be enough, and Anuya Phule, a psychotherapist in the country, added that to truly know what one was going through, it was important to empathise with them.
When it comes to tackling disability, three steps come to the fore – increasing awareness, reducing preventable disabilities and most importantly, integrating people with disabilities into regular society.
“If children are mentally or intellectually challenged, they need therapy and counselling to learn the skills to take care of oneself,” she revealed.
“The first priority is to teach skills to the child to take care of themselves, because their verbal and motor skills are delayed, so they need to learn languages to communicate. They need to be taught writing, verbal and motor skills. It is a different ball game altogether.
“This is also common with people who have suffered serious accidents. When a person goes through grief, to come to terms with it takes time. A person has to heal from the pain (s)he is feeling,” added Anuya.
“Then you have to look at self-confidence, self-esteem and believing in oneself. It is not easy for the family as well, because the person himself has to go through emotional turmoil. For them to see a loved one in pain is not easy for them. The family also goes through the same process, because they need to grow up quickly, and they need to have the mental and moral strength to deal with it.” – [email protected]
General principles, Convention on the Rights of Persons with Disabilities
United Nations Department of Economic and Social Affairs
The principles of the present Convention shall be:
1.) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons
3.) Full and effective participation and inclusion
4.) Respect for difference and acceptance
of persons with disabilities as part of human
diversity and humanity
5.) Equality of opportunity
7.) Equality between men and women
8.) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.