A call to break barriers and open doors
by Peter Tan. Posted on November 30, 2013, Saturday
THE United Nations General Assembly proclaimed Dec 3 as the International Day of Disabled Persons through Resolution 47/3 on Oct 14, 1992. This was to continue with the agenda of the United Nations Decade of Disabled Persons from 1983 to 1992, which had been a period of awareness-raising and action oriented measures towards the equalisation of opportunities for affected parties.
The official title of the day was changed to International Day of Persons with Disabilities by the General Assembly through Resolution 62/127 in December 2007. From the perspective of the Social Model of Disability which I subscribe to, disabled persons and persons with disabilities have different meanings. However, for the sake of expediency in this article, we shall use both to mean the same.
The United Nations encourages the observance of this day by holding activities that promote participation of disabled persons in mainstream society through the implementation of concrete actions on the basis of equality.
As with past years, there is a specific theme to encourage stakeholders to observe this day meaningfully. It also reflects the effort of the United Nations General Assembly in fostering awareness and action towards a disability-inclusive society.
The theme for this year is ‘Break Barriers, Open Doors: for an inclusive society and development for all’. This is similar to the theme last year, which was ‘Removing barriers to create an inclusive and accessible society for all’. In many ways, both themes echo the prevalent issues that are still dogging disabled persons and preventing them from achieving a reasonable quality of life.
The main stumbling blocks to inclusion and participation in this context are attitudinal and environmental barriers. Prejudice and stereotyping often lead to wider negative implications that include segregation, exclusion and discrimination. Environmental barriers are the subsequent results of these attitudes which further marginalise disabled persons in all areas of their lives. The International Day of Persons with Disabilities provides opportunities to raise awareness of disability and promote accessibility through the removal of barriers, and to realise the full and equal participation of disabled persons in society. All stakeholders including government, civil society and disabled persons are encouraged to come together to focus on issues related to inclusion in development as beneficiaries and agents on this day.
Among the events suggested are forums, public discussions and campaigns to further integrate disabled persons and their families into society and in development plans. Most importantly, practical and concrete actions should be implemented for disabled persons to realise meaningful and equal participation.
I remember commemorating this day many years ago by participating in a protest against the inaccessible public transport system. Members from 16 non-governmental organisations gathered near Kuala Lumpur Sentral, Malaysia’s largest transit hub, to voice our dissatisfaction at being left out in the planning and implementing stages in the purchase of 1,000 buses by a government-owned bus operator.
Since that day, I have always looked back during this noteworthy day every year to see how much we have achieved for that particular year. I am disappointed to say that even with consultation with disabled persons as stakeholders in various infrastructure projects, progress has been slow. There was simply no political will to make the situation better. For this year, I hope that things will be different. Datuk Rohani Abdul Karim is the new minister helming the Ministry of Women, Family and Community Development. I anticipate that she will effect changes to enable and empower disabled persons, which is part of the responsibility of her ministry.
At the same time, Bathmavathi Krishnan is the newly-minted representative and the voice of disabled persons in the Upper House. There was dissatisfaction with regards to her appointment as a Senator under the disability ticket as there was no consultation with leaders in the disability movement. Nevertheless, with all eyes on her, especially from her peers, Bathmavathi is pressed to deliver and realise the aspirations of the people she represents.
The government on its part must be well reminded of the oft-quoted slogan of “Nothing about us without us”. Every issue that affects disabled persons should be done in full consultation with disabled persons as we know our needs best.
The national-level celebration of International Day of Persons with Disabilities 2013 will be held at the Sultan Salahuddin Abdul Aziz Shah Arts and Cultural Centre in Universiti Putra Malaysia, Serdang, Selangor. The venue will take on air of carnival with a host of activities, competitions and exhibitions.
Assistant director of the OKU Development Department Nurulhuda Zainal said: “We are expecting about 2,000 guests and visitors to this celebration which will be officiated at by Datuk Rohani.
“Several awards are slated to be given out at the same time. Disabled students who have excelled in various public examinations will receive awards together with employers who implement inclusive policies in their organisations and entities providing accessible facilities.”
This day is also a good time for the minister and the government to appraise the ongoing efforts in uplifting the life of disabled persons in accordance with the Convention on the Rights of Persons with Disabilities and the Persons with Disabilities Act 2008. A lot more can be done in this aspect and in the spirit of the International Day of Persons with Disabilities.
Comments can reach the writer via firstname.lastname@example.org.
Posts that may be related:
Against all odds
by Peter Tan. Posted on November 23, 2013, Saturday
WHO is this woman who keeps talking and massaging my hands and legs? I do not know her at all!” That question went through Albert Au Yang’s mind as he lay in bed.
He looked around. It was an unfamiliar place. He tried to move but the right side of his body was not responsive. He tried to speak but no sound came out. His left hand was restrained to the bed rail. He could not even go to the bathroom.
“I was scared. I wondered what was going on. All I wanted to do was to go back home.”
That was a time of great uncertainty for Albert as he tried to piece together the events of how he came to be where he was then. It eventually dawned on him that he was in a hospital. The only person he recognised there was his mother.
The other woman was always there during visiting hours, praying for him. She was strict. She would not allow him to do certain things. For the life of him, he could not figure out who she was.
One day, the woman took out an iPad to show him the photographs that they took together. So, she was his wife but when did they get married? How did they meet? All these questions kept playing in his mind.
Albert and his wife, Sue-Rynley Emley, were living in Kuala Lumpur then. He was 35 years old and working as a salesman for photocopier machines. Sue was a mechanical drafter. They met online through Skype and then met face-to-face in 2007 when she was studying at a university in Kuantan, which was also his home town.
“I cannot remember what actually happened on that day in December last year,” Albert began to recount of how he landed in the hospital. “According to Sue, she tried to call and SMS me for the whole day but without success.”
She rushed home only to discover him sitting on the floor, barely conscious with saliva dribbling from his mouth. He was not responsive. She summoned an ambulance.
The diagnosis by the doctors in the hospital was left basal ganglia haemorrhage – bleeding deep inside the brain – usually caused by hypertension. He had to undergo emergency surgery to drain out the blood and fluid that was pressing against his brain.
Due to the extensive bleeding and the late medical intervention, doctors told Sue that Albert’s chances of survival was 50-50. His blood pressure was 271/155, which was excessively high. Further diagnostics revealed that he also had Stage III chronic renal failure.
Even if he survived, Sue was told to expect the worst. He could be in a vegetative state or paralysed for life with minimal likelihood of recovery. Those were not prospects she wanted to hear but there was nothing she could do except to pray for him. And pray she did.
The haemorrhage caused hemiplegia to the right side of his body. His speech was impaired. After his condition stabilised and there was nothing more the doctors could do for him, he was discharged after being warded for 46 days in the hospital.
Although he was still physically weak, Sue immediately took him on a perilous journey back to her home town in Kuching where she could take better care of him. He almost fainted during the flight and had to be administered with oxygen. As soon as they arrived, he was admitted to the Sarawak General Hospital for overnight observation.
“After I got back from the hospital, Sue got her grand-uncle who is a traditional masseur to massage me every day for one whole week. I could turn my body and even sit up after that.”
His daily routine consists of exercises and more exercises, even when he is in bed. “Previously, Sue helped me but I can do it on my own now.”
The physiotherapy and occupational therapy sessions at the hospital also helped him to recover faster. From being bedridden, Albert learnt to walk with a quad cane. He still walks with a limp but he is glad that he can actually walk.
“According to the therapist, I have almost reached the maximum level of physical recovery. But I have to push myself more to see how far I can go.”
Albert credits Sue and her faith for his recovery. “I am glad that she was there for me. If not, I do not think I can make it this far. She was the one who found me when I was afflicted with stroke. She has taken good care of me since. Praise the Lord for his blessings.
“People told her all sorts of negative things but she just held on to me. If she was not this optimistic, I guess whatever the doctors said about my condition would have come true.”
Sue resigned from her job to care for Albert. His employer was kind enough to pay him his full salary for the first six months. They are very much on their own now, surviving on their savings and some financial assistance from his parents.
They are living with Sue’s parents at Batu Kitang in the interim. The kampung house that he is living in now is accessible for the times that he needs to use a wheelchair. His in-laws are also chipping in by paying for all the utility bills.
“We only need to spend on food and petrol, and for getting items for our business.”
According to Albert, the cost of living is lower compared to Kuala Lumpur, the air fresher and he gets to eat tastier vegetables that they cultivate in the backyard. Moreover, they are surrounded by family members who are ever willing to assist them.
In the meantime, in between helping Albert with his daily activities, Sue is indulging in her love for sewing. She makes soft toys, children’s clothing and cloth pantyliners. These handmade items are for sale in limited numbers.
While Albert is on the gradual road to recovery, their savings are decreasing by the day. In view of this, both of them plan to start working again by next year.
“It may be hard for me at first but I need to work. I do not want Sue to do it all. She is my wife, not my maid. Maybe working will help in my recovery, too. Sue worries that the stress may affect my health. I assured her that I will do it within my limits. There are a lot of factors to be considered but in the end, I just want to do the best for the both of us.”
With Albert’s determination and grit, and Sue’s unwavering love and resourcefulness, there is no doubt that they will both be back on firm footing again in no time. After all, Albert managed to recover to this extent against all odds. There is little that can stop him now.
Readers can find out more about Sue’s handmade crafts at: www.facebook.com/sue.rynley
Comments can reach the writer via email@example.com.
Posts that may be related:
Between life and death
by Peter Tan. Posted on November 16, 2013, Saturday
SEVERAL news articles that I read recently got me thinking again about the worth of life. They were stories on one person — Timothy Bowers. The 32-year-old man owned a successful mechanic shop in Indiana in the United States. He just got married in August. His wife is pregnant and expecting their baby in April next year.
On the afternoon of Nov 3, he went deer hunting. As he was climbing up to his tree stand, he stepped on a dead branch that gave way. He fell 16 feet to the ground. The impact from the fall fractured three cervical vertebrae and left him instantly paralysed from the neck down.
He was found at the scene only five hours later. At the hospital, he was heavily sedated and hooked up to a ventilator. The prognosis was not good. Due to the severe trauma to his spinal cord, doctors thought he might never be able to breathe on his own, let alone regain the use of his limbs and walk again.
Apparently, he had a conversation with his wife prior to the accident that he never wanted to spend his life in a wheelchair. Faced with the reality of that grim prospect, his family members requested for the doctors to bring him out of the medically-induced coma. The intention was to present the prognosis to him and ask if that was the kind of life he wanted. He responded to indicate it was not. Doctors asked the same question and the answer was the same.
Based on his decision, doctors removed his breathing tube. Seventy five family members and friends gathered around to share those last moments with him in the hospital and to bid goodbye to him. He died five hours later surrounded by his loved ones, just one day after that tragic fall.
I cannot imagine how heart-breaking it must have been for the family to see him in that condition, then learn of his decision to go off life support and watch him pass away. Most importantly, it was his personal decision. Whatever it is, it was a scenario we can never really empathise with, no matter how hard we try, unless and until we are caught in it ourselves, and then maybe not.
While I try very hard not to judge the entire incident, I cannot help but ponder over two issues arising from it: the haste in presenting the options to him and the stigma of being a wheelchair user. Was it too soon to make an informed decision especially when the body was still in shock? Is there no meaning to life after becoming a disabled person?
I remember I was in a daze for days after the accident that left me paralysed. Although I did not need a ventilator, my breathing was shallow as my diaphragm was affected. The traumatic experience of suddenly losing the ability to move my limbs and losing sensation to 80 per cent of my body was simply too overwhelming. It was as if the world had collapsed on me.
My emotions were a jumble of depression, desperation and panic. I was not sedated. Nonetheless, I was not in a state of mind to decide anything, and definitely not decisions with regards to my treatment and more so those that involved life or death.
Therefore, I cannot comprehend how a matter of such importance could be decided on in a matter of minutes or hours. Things could be better, or it could just be the same. We would only find out if we hang around long enough to see it.
On the matter of stigma, the general perception is that being disabled is a fate worse than death. This is how it has been portrayed for a long time. Casual onlookers may look at a person with severe physical impairments and resolve that life is meaningless when one cannot walk or feed oneself.
That is a very simplistic perspective of the situation. A person’s worth is reduced to what one can or cannot do by oneself. The zest for life and the desire to survive by any means, a trait of all sentient beings, are overlooked, ignored and not encouraged.
I have friends who are living with high-level paralysis from spinal cord injury and muscular dystrophy. Some have limited hand function, others none at all. They have personal assistants to support them in all their activities. When I first got active in the Independent Living Movement, they were my role models. They still are.
They are not only living testaments that severely impaired persons can live productive lives. Their work in promoting independent living has changed the lives of many people in similar situations across the Asia Pacific and Africa.
Having to use a wheelchair permanently is not a life sentence. I am not going to say that it is easy either. There are challenges every step of the way. However, we need to look beyond what we can and cannot do physically to see that life is truly worth preserving.
Irrespective of my sentiments in this issue, I pray that Timothy Bowers has found peace wherever he is now.
Comments can reach the writer via firstname.lastname@example.org.