Muzaffar the self-made man
by Peter Tan. Posted on March 8, 2014, Saturday
A VACCINATION gone wrong left Muzaffar Haydarov with infantile paralysis as a toddler.
Growing up in the Uzbek city of Almalyk was difficult as there was very little support provided to children with his condition.
“I could not play with the other kids,” Muzaffar lamented through his translator, Dilmurad Yusupov.
The portly 37-year-old speaks Russian and Uzbek but no English. They were in Malaysia to attend the Training of Trainers on Disability Equality Training (DET) held in Kuala Lumpur recently.
“In my childhood, I did not have a wheelchair. It was difficult for me to go out. I was always envious of my friends when they came to see me. They could go anywhere they wanted to but I was always at home. I felt sad because of my inability to walk.”
Without a wheelchair, he could not go to school. Even if he had a wheelchair, the environment would have been difficult for him to move around independently. He went to a boarding school for disabled children but his parents took him back after only a short while there.
“They said it was better to receive an education at home. My parents were not comfortable with me being alone in the school because I needed assistance with some of my activities.”
Nevertheless, Muzaffar was told that education is important. His future would be bleak without one. With no opportunity to go to school, the idea of studying became just a pipe dream that he did not consider taking up seriously from then on.
“We thought the future was very far away. Now I regret I did not go to school to get a proper education.”
His first taste of freedom was at the age of 17 when he received his first wheelchair. With his new-found mobility, he took up apprenticeship with a shoemaker. Even then, his parents discouraged him. They told him that being a shoemaker was difficult and that he would not be able to make shoes. He slogged on nonetheless.
“My biggest dream was to have a family and live independently from my parents. My girlfriend then was also a disabled person. When we decided to get married, my parents and my friends told me that we would not be able to build a family. There were few jobs for disabled people and the fact that we were both disabled made it doubly difficult.”
The lack of support from the people around him did nothing to discourage him. He decided on his own to get married anyway.
“I have my own family now. I live independently and have my own business. This dream has come true,” he said with a glint of satisfaction in his eyes.
They are blessed with two sons aged 11 and six. Muzaffar supports the family by running a small but thriving business dealing in sundry items.
Early last year, the Uzbek government provided credit for entrepreneurs to develop the livestock industry in the country. Muzaffar was one of the successful applicants. He now owns a flock of goats, sheep, cattle and horses.
On why he chose to raise livestock, especially when he is a wheelchair user and may face difficulties in rounding up the animals, his matter-of-fact answer was: “Every business has its own difficulties.”
He added that his wife and elder son are assisting him in the venture together with two full-time workers.
“Disabled people in Uzbekistan are facing a lot of difficulties,” said Muzaffar, “but I also feel that the government is paying more attention to disability issues and the problems that we are facing lately.
“For example, a new law was implemented recently to ensure that new buildings provide accessible facilities like ramps, handrails and toilets for disabled people. If these facilities are not included, the application would be rejected. On the other hand, we have too many old buildings from the Soviet-era, which are mostly inaccessible. So these are the problems.” (Uzbekistan was part of the Soviet Union between 1924 and 1991.)
“In such cases, the mahallas will look into making the buildings more accessible on a voluntary basis. Mahallas are neighbourhood councils that manage the social and communal activities such as supporting disabled people and senior citizens, resolving marital conflicts and assisting in poverty issues in the community, among others. There is one in each community. They work for the betterment of the communities and country.”
Muzaffar decided to take the long journey to Malaysia because he wanted to learn the ways to make the built environment accessible. His aim is to become a DET trainer so that he can create awareness of the problems faced by his peers back in Uzbekistan and improve the situation.
“I have so many plans after this. I have learnt so many things. I want to spread this knowledge back in my country. I want to open the eyes of people like me and empower them, let them discover their self-confidence which they have not realised.
“I want to see equality for disabled people where we can work in the same place, ride in the same bus and go to the same school as non-disabled persons. In Uzbekistan, when I go out in the streets, they stare at me. They often look at me with a sense of pity, like I am always in need of something from them. I hope to change this attitude and perception.”
His greatest wish now is for both his sons to get a proper education.
“I didn’t have this opportunity when I was young. I want them to be educated. And I will be very happy.”
Time and again, through sheer grit and unwavering determination, Muzaffar has proven that he can accomplish anything when he put his heart and mind into it. With this spirit, he certainly can bring about the desired changes to empower and enable disabled people in Uzbekistan.
Comments can reach the writer via email@example.com.
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Man proposes, God disposes
by Peter Tan. Posted on March 1, 2014, Saturday
MY journey to God was one filled with periods of belief and disbelief. Among others, I have listed myself as atheist and agnostic over the years. Filling up official forms requiring that information was a problem as one was generally expected to be in one of the mainstream religions. Most times, I had to reluctantly pick a religion that I had no faith in just for the sake of having the form accepted.
The accident that left me paralysed from the neck down made me question the existence of God even more. I reasoned that a good God would not allow a tragedy like this happen to me. That was also the time when friends and relatives, whether out of good intentions or with ulterior motives, introduced me to religions that could purportedly make me walk again.
Their proselytising annoyed me very much. One of them even had the impudence to say that my father, who was practising a mix of Buddhism and Taoism, was worshipping Satan. This and several other similar distasteful incidents made me keep my distance from them and from religion.
Despite my misgivings with zealots professing those faiths, I spent a lot of time reading books on Buddhism and Christianity on my own accord. As hard as I tried to relate my life to the teachings, I just could not make the connection. They offered nothing that I wanted.
When my mother became seriously ill, I put my trust wholly in medical science. The doctors tried their best but in the end they indicated that there was nothing more they could do to treat her when her condition turned for the worse. My mother, knowing that her time was near, kept pleading with me to take her home which I did. That was her last request before she drifted into a coma.
She was a Roman Catholic, as with most of the relatives from her side of the family. They asked if they could get a priest to give her the last rites. I had no objection as I believed she would have wanted that. They also arranged for a group from the church to come to pray for her as well.
While they were gathered around her bed in the room praying, I was by the door outside, my eyes closed and praying in my own way, not to any particular God, for her to be well again. I had never prayed as earnestly as I prayed that evening.
Just before the group concluded the prayers, I had a vision of my mother, radiant and smiling to me as she was being led skywards by two angels. I have never seen angels before but there were no reservations in my mind as to who they were.
My heart sank. Deep inside, I knew her soul had already passed on. True to my intuition, she breathed her last four hours later. On one part, I was utterly devastated. My prayers for her to be healed were not answered. She was taken away from me anyway.
On the other part, the sight of her in a healthy state again greatly consoled me afterwards. That revelation totally changed my spiritual perception. I found peace knowing that she was in a better place and not suffering any more.
It also convinced me beyond an iota of doubt that there is a God. How I made the connection this time I had no idea. From that day on, I learnt to pray. I prayed for the souls of my parents. I prayed for health. And I prayed for directions to make myself useful. In those moments when I held my hands together in prayer, I found a sense of belonging and serenity that I had never experienced before.
As I moved on in life, I became involved with the disability rights movement, pushing for a society that is accessible and inclusive. I was given opportunities to undergo specialised training locally and overseas. Finally, I found something that was worthwhile to do, one that could change my life and that of other people in the same situation as mine.
Somehow, my spirituality faltered somewhere along the way. My faith was placed on the back burner as I became busy with one activity or another. I stopped praying. There was always something that was more important than my nightly communion with God. It has been so long that I cannot even remember the last time I prayed.
Two elders in the family are afflicted with serious illnesses at this moment. As I contemplated over the situations they are in, I am reminded of the power of prayer. It dawned on me that my supplication for directions to be useful manifested ways that have been beyond my expectations.
My expertise in disability equality is being put to good use in changing mindsets towards disabled people. It has taken 10 years for me to reach this stage from the time I first prayed. Now, I am more convinced than ever that God exists and that prayers do get answered although not how we may want them or at the pace we desire.
As for the elders who are ill, I pray that God will be merciful and heal them physically and spiritually. And perhaps then, I can also rediscover the sense of belonging and serenity again in these troubled times.
Comments can reach the writer via firstname.lastname@example.org.
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OKU is not OK!
by Peter Tan. Posted on February 22, 2014, Saturday
ACCORDING to the Persons with Disabilities Act 2008, “persons with disabilities include those who have long term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society.”
In this article, I will not discuss the English term used in the Act. The term for ‘persons with disabilities’ in the Malay version of the Act is ‘orang kurang upaya’ and abbreviated as OKU. For the lack of a better term and for the sake of expediency, I use OKU but very sparingly. I am troubled by the image it projects each time I used it because when translated because it means people who are less able.
I admit that I am a stickler when it comes to terms used to refer to people like me. Am I a person with disabilities, OKU or disabled person? They may seem the same at the first glance but there are very distinct differences when we delve deeper into their meanings.
What are the factors that prevent people from meaningful participation in society? It all boils down to the location of the problem. Is the problem in the person or in the environment? Is not being able to walk or not being able to see an issue? Or is the way we construct the world around us the issue?
When we talk about disability, we are not talking about the functional aspects of the individuals. The Act and the Convention on the Rights of Persons with Disabilities have similar definitions when it comes to this. In a nutshell, disability results from the interaction between persons with impairments and barriers that hinder their full and effective participation in society.
My experiences in Tokyo, and in a small part Seoul, have enlightened me on the reality that even people with severe physical impairments can live independently in the community when there are sufficient accessible infrastructure and support systems.
Essentially, in our country, people are needlessly inconvenienced and segregated by barriers that are man-made. Having identified the location and the cause that are preventing meaningful participation in society, I am baffled by why people still come up with terms that attribute the problem to the individual instead of pinpointing the root cause.
In this column previously, I have stated my preference for disabled person over person with disabilities. The former identifies that the person is disabled by external factors as opposed to ascribing the disabilities to the person in the latter.
As for ‘orang kurang upaya’, this term clearly states that the person is the problem. This brings up the question of whether disabled people are people who are less able. On what basis do we define the abilities or lack of abilities of a person? Again in this matter, let us not lose sight of the location and the cause of the problem, and that disability is participation restriction caused by barriers as defined in the Act and the Convention.
I spoke out on the need to redefine disability and how OKU is not an appropriate term in a national conference on disability a few years ago. It ruffled some feathers as it was the term used in all official government documents. It being used in official documents does not make it correct just like how ‘orang cacat’, which was previously used in government documents, was replaced with OKU.
Of late, there is an initiative to soften the meaning of OKU even more by redefining it to ‘orang kelainan upaya’ or differently abled people. The logic was that disabled people have different abilities; what those abilities are I do not know.
The fact is that humanity is diverse and everyone has different abilities. If that is the case, calling disabled people differently abled is of no meaning. It dilutes the problems that we face and devalues the advocacy efforts that we have been working on.
Given a choice, I would rather be known just by my name or as a regular person. Nevertheless, identifying ourselves as disabled persons is a political stand my colleagues and I of same school of thought make in order to further our agenda for an equal and just society.
Disability advocacy should not be limited to conducting disability awareness training, demanding for our rights through demonstrations and complaining though the various media. These forms of activism have been going on for the past few decades but the progress is still moving at a snail’s pace.
This matter cannot be taken lightly any more. Agreeing to be labelled as ‘orang kurang upaya’ is an admission that the problem that we are facing is the result of our impairments. It weakens our arguments against the injustices that we face every day because we are ‘less able’ and are therefore a part of the problem.
There is no politically correct replacement for OKU at the moment. We need to take a strategic position on this matter. First and foremost, the disability movement in the country needs to come together to coin one term in Malay that succinctly states our position as a community of people who are still experiencing discrimination and oppression. Only when we are able to clearly define our stand on who we are can we have the confidence to demand for what we rightfully deserve.
Comments can reach the writer via email@example.com.