The Language of Disability – Breaking Barriers – The Borneo Post – 9 March, 2013

The language of disability
Posted on March 9, 2013, Saturday

THE terminologies related to disability are still evolving. We have not reached a consensus where the terms we use are universally acceptable by everyone. Depending on a person’s orientation, what is offensive to some is acceptable to others. Nonetheless, I have a distinct preference for the words and phrases that I use when it comes to talking about disability matters.

My peers have asked me why I am still fussing over semantics when I should be putting in effort to solve the real problems. I believe that it is important for me to establish a positive image of myself in the advocacy work that I do. How I see myself is magnified in how other people see me. It is a political stand I take to elucidate the difficulties that disabled people face in society.

I am a proponent of the Social Model of Disability. This model is of the view that people are disabled by inequality and social exclusion. It identifies the causes of these problems. They are man-made barriers created through omission, ignorance, prejudice and discrimination in attitudes and actions. The removal of these barriers can greatly improve our well-being and allow us to become independent, and enjoy opportunities and choices like other members of society.

The Social Model of Disability makes a distinction between impairment and disability. They do not mean the same. Impairment is the loss of sensory, physical or mental functions of the body from congenital causes, injuries or diseases. On the other hand, disability is participation restriction in society that is caused by various forms of external barriers.

For example, I have spinal cord injury. I cannot walk. That is an impairment. I use a wheelchair for mobility. Disability occurs when I cannot get into the cinema to watch a movie because it has no ramp at the entrance. Putting a ramp for me to enter will remove that disability. It is as simple as that. Of course, this is looking at one problem in isolation. The cinema may have other barriers that cause disabilities and these may have to be removed as well.

The term persons with disabilities is used in the United Nations Convention on the Rights of Persons with Disabilities. However, the world body also takes the stand that: “Disability is not something that resides in the individual as the result of some impairment.” It further adds that, “Disability resides in the society not in the person.” Persons with disabilities is used here for the sake of expediency in the absence of a term that is acceptable to all.

People who subscribe to the Social Model of Disability prefer disabled persons. It is taken to mean that persons are disabled by barriers in society which is exactly what is happening. On the contrary, persons with disabilities puts the ownership of disabilities on the individuals. Their impairments are the cause of the disabilities they experience.

Persons with disabilities gained prominence with the emergence of the People First Language movement. According to its manifesto, the person should come before the condition. This is to preserve the dignity of the persons concerned as we are not our conditions and should not be identified as such. That, I totally agree with. However, “persons with impairments” is a more fitting term to that end as it has been established that disability is not in the person but in society.

Some other terms like handicapped, wheelchair-bound, the disabled and differently-abled are used frequently in conversations and printed materials. Handicapped is an archaic term that is no longer used to refer to disabled persons. Its usage brings to mind a sense of pity, helplessness and inferiority. At the same time, accessible parking and accessible toilet are preferred over handicap parking or disabled toilet. These facilities are made to be usable by disabled persons; hence they are accessible to us.

When I first sat in a wheelchair, I saw it as a shackle. It felt like I was serving a long prison sentence. Over the years, I have come to appreciate the freedom and independence I gained. It has allowed me to travel to places I otherwise would not be able to because of tetraplegia. I no longer see myself as being bound to the wheelchair. It is the very tool that liberates me. In that sense, wheelchair user is more acceptable.

The use of “the disabled” as a collective noun is considered a form of social segregation. Disabled persons is the better choice as we are very much a part of mainstream society too. The term differently-abled actually focuses on the impairments of the person. All of us are differently-abled which makes it redundant. But the reason eludes me on why it is applied specifically on disabled persons.

The opposite of disabled persons is neither able-bodied nor normal. That term is an expression of the difficulties we face. There are double leg amputee Paralympians who can outrun most people on this planet. Who then is more able-bodied in this case? On the same note, having impairments is not an abnormality. It is part of life and living. When there is a need to mention people without impairments in relation to disabled people, non-disabled persons should be used instead.

While it took me several hours to write this piece, I spent a good many years trying to figure out the terms that are acceptable and appropriate, and those that are not. It is not about political correctness. It is about our struggle. It is about self-respect. I must also emphasise that I am not saying that it is wrong to use one term over another. These are not the absolutes. It is a matter of values and perspectives. And these are mine.

Comments can reach the writer via columnists@theborneopost.com.

Read more: http://www.theborneopost.com/2013/03/09/the-language-of-disability/

The Long and Twisted Path – Breaking Barriers – The Borneo Post – 2 March, 2013

The long and twisted path
Posted on March 2, 2013, Saturday

MY life after the accident was unnerving. The physiological aspects of my body were drastically altered and no longer functioned like they used to. I was like a baby having to learn everything anew.

The spinal cord is a bundle of nerves relaying impulses that coordinate movement and sensation between the brain and the body. When it is injured, the impulses are interrupted. The higher up the injury to the spinal cord, the more severe the paralysis becomes.

My injury was at the cervical segment of the spine. This is at the neck level which is rather high up. Because of that, my fingers are barely functional and my wrists are weak. My diaphragm is also impaired and I am unable to take in a full breath.

The injury did not only rob me of the ability to walk or move my arms. I no longer have control over my bowel and bladder. I need suppositories to help me defecate. I have to insert a catheter, which is essentially a latex tube, into my bladder to drain the urine.

The only good thing about the injury is that my spinal cord was not totally severed. Although I am effectively paralysed from the upper chest down, I have a numb sense of touch that progressively diminishes downward. However, I have no sense of temperature. Pain, hot or cold feels the same to me.

The doctor had wanted to send me for rehabilitation after I recovered from the surgery. My father did not like the rehabilitation ward because it looked dingy and depressing. He felt that putting me there was like accepting that I would never walk again.

As there was nothing more that the doctor could do for me, he allowed me to go home. I did not go through the proper rehabilitation process because of that. It would have been an important step for me to learn to manage my activities of daily living with whatever limb functions I still possess.

Without the benefit of guidance from an occupational therapist, I had to learn through trial and error, and from people in similar condition that I befriended in the hospital. Although I regained some strength from the intensive physiotherapy sessions, I lacked the physical skills to care for myself.

For many years after that, I depended on my mother for tasks like cleaning up after I emptied my bowel, draining the urine bag and helping me wear clothes. I had not seriously thought about how I was going to cope when she was no longer around.

It was only 15 years later that I learnt to dress by myself. I had to do it because I was planning to travel alone from Penang to Kuala Lumpur to meet some friends. We had gotten acquainted in an online chat room.

Having tasted the freedom of being able to travel by myself, I was determined to be more independent in all my activities. My mother would still hover around, ready to lend a hand whenever she thought I needed it.

It usually took me 30 minutes to put on diapers, clothes, socks and shoes. When I was dressed and ready to go, I would be breathless and exhausted.
One day, I had an extremely difficult time wearing my pants. My mother came to my rescue. I was more than happy to let her help me again.

This she continued to do until she was no longer able to. She had gotten seriously ill and became bedridden by then, and I had to attend to her needs instead.

Those few months before she passed away, I had to perform most of the household chores including looking after her and myself. It was then that I realised she had sacrificed much to make my life easier. Indeed, a mother’s love knows no bounds.

Without my mother to fall back on after that, I had no choice but to manage my activities of daily living by myself. Through constant practice, I could put on my clothes more quickly. Eventually, I could get fully dressed in 10 minutes by improving my techniques. It was still as tiring though.

All in, it took me 20 years to get my act together, to work all my activities of daily living into a routine that I could handle by myself. Had I been guided by an occupational therapist in the initial stages, I would not have had to take that long and tedious path.

What I want to point out here is that rehabilitation is a crucial component in the recovery process for people living with the chronic effects of spinal cord injury. It is one step that should not be skipped at all costs.

I only realised that I could do more than I thought possible when my mother was no longer around to pamper me. That took two long decades. Rehabilitation would have helped me achieve that in a much shorter time.

I am not blaming my mother for that or my father for not allowing me to undergo proper rehabilitation. They did what they thought was best for me but tough love would have been the best love under those circumstances.

Comments can reach the writer via columnists@theborneopost.com.

Read more: http://www.theborneopost.com/2013/03/02/the-long-and-twisted-path/

The State of Accessible Facilities: Breaking Barriers – The Borneo Post – 23 February, 2013

The state of accessible facilities
Posted on February 23, 2013, Saturday

FREE TO MOVE ABOUT: The street environment, public buildings, trains, monorails and buses in Japan are all accessible to the disabled.

THROUGHOUT the 28 years that I have been using a wheelchair, I have always faced significant problems whenever I am out and about. The built environment and public transport system in Malaysia are severely lacking in accessible facilities. That is the main reason I do not go out as often as I wish to.

The enactment of the Uniform Building By-Law 34A (UBBL 34A) has not changed the situation much. This by-law requires that public buildings built after it came into force provide access for disabled people. Buildings built before its commencement must be retrofitted with such facilities within three years.

More than 15 years after the by-law was gazetted by the various states, disabled people still face the same problems in public buildings. All the local governments, the bodies responsible for implementing the by-law, must take the blame for not strictly enforcing it after so many years.

While newer buildings having better facilities, they are far and few in between. Moreover, there is a lack of connectivity in the form of walkways and public transport between these buildings, making them “islands of accessibility in an ocean of barriers”.

In this respect, the UBBL 34A should ideally include the requirement for the street environment to be made barrier-free as well to ensure an uninterrupted passage from point to point. There should also be a law to make public transport accessible. At the moment, these two are the missing links in the circle of mobility that hampers the free movement of disabled people.

This is in sharp contrast to Japan where I spent two weeks attending training on independent living with two other wheelchair users from Malaysia. The infrastructure there was mostly barrier-free. The street environment, public buildings, trains, monorails and buses were all accessible to disabled people.

I could move from place to place conveniently without the fear of being stranded halfway. The two weeks there for me was like being in paradise. For the first time in my life as a wheelchair user, I experienced an unprecedented sense of liberation. I was like a bird suddenly set free from the confines of a small cage.

In the mornings, a van with wheelchair lift would pick us up from the apartment where we were staying to take us to the Human Care Association in the city of Hachioji for our lectures. This is the first independent living centre in Japan. It was established in 1986.

In the evenings, we went back to the apartment by train and monorail. All the stations are equipped with elevators and stair lifts, and also portable ramps for wheelchair users to get on and off the trains. Walkways are paved with tactile tiles to guide blind people. The entire journey was so seamless that I could actually travel by myself without assistance if I so desired.

The day after I returned to Kuala Lumpur, I went around the city. What awaited me was a reverse culture shock. Every step of the way was fraught with barriers. I could not get into buses and LRT stations. Broken pavements and the lack of kerb ramps made moving about extremely gruelling even with assistance from my girlfriend. Truth be told, I had to struggle for a while trying to adjust to life back home.

I am not alone in facing these difficulties. Disabled people all over the country have been experiencing the same problems for decades. Our mobility is severely restricted. Our quality of life is affected as a result.

Without a barrier-free environment, we are unable to get out from our homes safely. Without accessible public transport, we are unable to move around conveniently.

We lose out on education which in turn limits our employment opportunities. Without work, we have to depend on our family for support. This cascading effect strains our families’ financial resources and lowers productivity all round.

Malaysia boasts of building world-class infrastructure like the North-South Expressway, Petronas Twin Towers, Kuala Lumpur International Airport and the upcoming Klang Valley Mass Rapid Transit. These projects are all very impressive by any standards.

However, they mean nothing to disabled people when accessible facilities in all the cities and major towns leave much to be desired. From Kuala Lumpur to Kuching to Kota Kinabalu and to George Town, disabled people are hard pressed to move around freely like I did in Tokyo. There are simply too many obstacles all over the place.

The right to access and use these facilities is recognised in the Persons with Disabilities Act 2008. Furthermore, Malaysia has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities that acknowledges those same rights. As a member state to the convention, Malaysia is bound to ensure that disabled people have access on an equal basis with others to these facilities.

Malaysia can easily make the built environment and public transport system inclusive of disabled people. We have the resources and expertise to achieve it. All it takes is to expand the relevant laws and the political will to put those laws into action. And in the absence of that will, the powers must be held legally responsible for failing to uphold their commitment to protect the rights of disabled people.

Comments can reach the writer via columnists@theborneopost.com.

Read more: http://www.theborneopost.com/2013/02/23/the-state-of-accessible-facilities/#ixzz2NVmE61se