Articles – Page 45 – Peter Tan – The Digital Awakening

Independent Living – Breaking Barriers – The Borneo Post – 20 April, 2013

Independent Living
by Peter Tan. Posted on April 20, 2013, Saturday

INDEPENDENT Living is a movement of disabled people working towards self-respect, self-determination and the right to live in the community. It all began with Ed Roberts, who is considered the father of the Independent Living Movement.

He and his entire family contracted poliomyelitis in 1953. He was 14 then. It was two years before the vaccine for the dreaded and debilitating disease became publicly available. While his family members recovered, the disease left him paralysed from the neck down. He had to depend on an iron lung to assist him in breathing.

After his discharge from an 18-month hospitalisation, he continued schooling from home via a phone connected to the school. His mother also encouraged him to attend classes in school once a week.

When he sought assistance from the California Department of Rehabilitation in 1961, the agency refused to provide support to him because he was considered too severely disabled to be employable. The rejection was later reversed.

In 1962, Roberts was the first severely disabled student at the University of California in Berkeley. The university had initially refused to admit him because of his condition but it also relented later on.

As there was no suitable accommodation for students in his condition, he had to stay at the campus hospital. Other severely disabled students subsequently joined him at the hospital. Some of the students eventually moved out from the hospital to say in the campus apartments.

They organised themselves to provide crucial services such as wheelchair repair and attendant referral service. With the allowance they were entitled to from the government, they employed attendants to provide personal care and bought electric wheelchairs to ease their mobility.

In 1970, the students managed to secure funding from the Department of Education to run the Physically Disabled Students Program. The programme was so successful that they received requests for services by disabled people who were not students as well.

The Berkeley Centre for Independent Living (CIL) was established in 1972. Apart from providing the essential services, the CIL also advocated for the civil rights, self-determination and equal access for disabled people. There are more than 400 CILs in America today.

After earning his postgraduate degree, Roberts taught political science at a college and then returned to Berkeley to lead the CIL as its second executive director. Ironically, in 1975, he was appointed director of the California Department of Rehabilitation, the very agency that had categorised him as too severely disabled to be employable.

Roberts introduced the Independent Living Movement to Japan in 1981. This was followed by a series of tours around Japan promoting Independent Living by Judith Heumann, another American disability rights activist, and other disabled advocates.

The first CIL in Japan is the Human Care Association. It was established in the city of Hachioji in Tokyo in 1986 by Shoji Nakanishi. To date, there are about 130 CILs in Japan under the umbrella body of the Japan Council on Independent Living Centres (JIL).

Independent Living leaders from Japan conducted three workshops in Malaysia from 2005 to 2007. Selected trainees from these workshops attended further training in Japan and Thailand. Subsequently, the Society of Independent Living for the Disabled Selangor was established in 2008.

Basically, an ILC provides support required by disabled persons to live in the community instead of in institutions. This includes information provision, peer counselling, personal assistant service and independent living skills training.

Peer counselling helps a disabled person regain self-worth. This is always conducted on a one-to-one basis by another disabled person qualified in peer counselling. It is the first and most important step in the process towards Independent Living.

Independent here does not mean that the disabled person has to live and do everything by himself. Where and when help is required, a personal assistant will provide the necessary support. This includes toileting, dressing up, cooking, feeding and even support in work if the disabled person is employed.

The funds to employ personal assistants are usually provided by the federal, state or municipal governments. The number of hours of the service required is determined through consultations between the ILC and the disabled person. A severely disabled person may need 24-hour support while a moderately disabled person may only need a couple of hours.

Most severely disabled persons are totally dependent on their families in every aspect of their lives. Perhaps, the most worrying issue that is seldom voiced out is what will happen to them when their sole carers, who are usually their mothers, pass away.

The role of providing for a disabled person should not rest solely on the parents or siblings. There surely will be times when they are unable to take on this responsibility. Independent Living is crucial in liberating severely disabled persons in this aspect. They can move on with support from the ILCs and personal assistants.

The Independent Living Movement is rapidly spreading across Asia, thanks to the unrelenting effort of Shoji Nakanishi through the Disabled Peoples’ International Asia-Pacific Region and Asia-Pacific Network for Independent Living Centres. ILCs have been established in 11 countries in the past two decades.

There is still a lot of work to be done in Malaysia though. Many severely disabled persons are still unable to realise Independent Living. There is a need to promote this movement throughout the country so that disabled persons understand the ways they can achieve self-determination and live with dignity.

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

Enabling Technology – Breaking Barriers – The Borneo Post – 23 March, 2013

Enabling technology
by Peter Tan. Posted on March 23, 2013, Saturday

FOR someone who did not get to go out often, there used to be very few alternatives for me to fill those long hours at home.

I spent a lot of my time in front of the television but there were only so many shows one could watch. It is not called the idiot box for nothing.

Then, I discovered the wonders of the computer. Now, my typical day begins with booting up the laptop just after I get up. This is where most of my activities of the day are focussed on. The day ends when I shut it down 15 or 16 hours later.

That may just seem like moving from watching television to looking at the monitor but the computer has truly opened up possibilities for me in more ways than I can count.

With an Internet connection, I have virtually most of the information I need at my fingertips. It is a voluminous archive on practically anything and everything although I do take things with a pinch of salt. Not all the information available on the Internet is reliable.

Nevertheless, I got a better understanding of my medical conditions from reading the various websites. I gathered a lot more information from there than from consultations with doctors.

I even learnt to measure myself for a fully customised wheelchair from a forum specialising in spinal cord injury. Members of this forum are people living with similar conditions, medical professionals and therapists.

They are more than willing to share their experience and knowledge. The wheelchair fitted me perfectly with no adjustment needed when it was delivered.

I do most of my work on the laptop. They include designing slides for the trainings that I conduct, writing articles and updating my blogs and the websites that I am administering.

The Internet is also a great place to socialise with friends and get acquainted with people having the same interests. I have made more friends from all over the world through the Internet than I ever did my entire life before that. The impact of this medium is simply amazing.

It was also through an online chat room that I met the love of my life. We got married a few years ago. Quite a number of our friends have also discovered love this way. That is a story for another day.

Having spent most of my weekdays in front of the laptop, I make it a point to reduce its usage on weekends. Those days are reserved for going out for a meal or two with my wife Wuan and for our weekly grocery shopping.

The digital age has also made it simpler to conduct disability activism. I was involved in an independent living network consisting of eight countries in the Asia Pacific.

Our monthly meetings were usually attended by about 10 participants from all over the region. All of us are wheelchair users. We managed these meetings through Skype. It would have been impossible without the Internet.

Technology truly provides a welcome relief for people with severe impairments. Our functional limitations are alleviated by assistive software and hardware.

Prominent physicist Stephen Hawking best exemplifies how these adaptive aids are enabling him. He is totally paralysed from motor neurone disease that also impairs his faculty of speech.

He composes words one letter at a time on an on-screen keyboard by twitching his cheek. The completed sentence is then converted into spoken words via a speech synthesiser. Without the device, it would have been impossible for him to communicate.

There are head-mounted pointers and speech recognition software that can be used to launch applications, navigate the screen, open and edit documents in place of a mouse for people with severe physical impairments.

Even if they are totally paralysed, they are still able to operate a motorised wheelchair fitted with a Sip-and-Puff system. Blowing into a tube commands the wheelchair to move forward while sucking on the tube commands the wheelchair to move backwards.

Likewise, screen reading software enables people with visual impairments to use the computer. It comes with tools for navigating and accessing web pages and all their content. Text on the screen is read aloud by a speech synthesiser.

Such software and devices improve productivity and provide a semblance of control and independence for people with impairments who would otherwise have to depend on a carer to tend to those tasks.

The drawback to these assistive aids is the prohibitive costs. The price of a wheelchair with Sip-and-Puff control is US$30,000. A screen reader or speech recognition software costs between US$600 and US$1,500.

They are expensive because they are designed for a very small market where the demand is low. Demand is low also because of the high price tag.

I truly believe that disabled people, more so those with severe impairments, should be given every support possible to achieve their full potential.

The technology is here. It has the potential to enable and empower many more disabled people like it did to me. The barrier is the cost. How do we break that for a win-win solution to both users and developers?

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

Why Disabled People Must Vote – Breaking Barriers – The Borneo Post – 13 April, 2013

Why disabled people must vote
by Peter Tan. Posted on April 13, 2013, Saturday

“MY one vote will not change anything.”

That was what I used to think. Imagine, a constituency full of like-minded people.

In that case, we deserve the politicians who get voted in due to our apathy.

These politicians may not have our best interests at heart but we have no moral standing to voice out against that.

How can we complain when we did not even bother to participate in the election?

We only have ourselves to blame when that happens.

That is why everyone who is eligible to vote must vote, more so when it comes to disabled people.

It is our right as citizens. That one vote is our most valuable asset as Malaysians. It is also our responsibility and duty as citizens to exercise that right to vote.

The exercising of that right, responsibility and duty makes us active participants in the democratic process of the country which in turn contributes to nation building.

Neither the Federal Constitution nor the Persons with Disabilities Act specifically mentions the political rights of disabled people.

However, Article 29 of the Convention on the Rights of Persons with Disabilities (CRPD) requires that disabled people are guaranteed full and effective participation in political and public life on an equal basis with others.

Malaysia, being a signatory to this instrument and having ratified it, is bound by the CRPD to ensure that those rights are protected.

Going out to vote on this important day raises our visibility in public. There are actually a lot more disabled people than we usually see out and about.

The first ever World Health Organisation (WHO) and World Bank world report on disability estimates that 15 per cent of the world’s population lives with some form of disability.

That is more than a billion people based on the 2010 global population estimates.

Hypothetically, if we apply that percentage on the population of Malaysia, we have 4.2 million people who are experiencing some form of disability.

That is a lot of people by any account. At that figure, disabled people make up the second largest minority that transcends ethnicity, gender and religion in the country.

State parties to the CRPD are obligated to ensure that voting procedures, facilities and materials are accessible, easy to understand and use.

In this aspect, most polling centres are situated in schools and community halls, and they are generally inaccessible.

This is a good opportunity for us to show the various barriers that we face and ensure that the facilities in these polling centres are made accessible, not only for future elections but for people who use it on a daily basis at other times.

By voting, we are able to discover other issues, like how the voting process can be made more dignified for blind people and people with severe impairments.

How do we ensure that this group of people are able to vote while at the same time preserving the integrity and secrecy of their ballot?

The Election Commission needs to look into these matters seriously. The only way to do this is to involve the stakeholders in the decision making process.

Our responsibility does not end after casting our votes. In fact, it is only the beginning.

After that, irrespective of the candidates we have voted for, we have to engage these politicians representing our constituencies.

We have to educate them on the issues affecting disabled people for them to draw up and implement effective policies.

Subsequent to the election in 2008, a group of us drafted a memorandum on the provision of accessible facilities for disabled people.

In Selangor, we forwarded the memorandum to the state government through a state assembly member.

Our fellow advocates in Penang got an appointment with the Chief Minister and presented to him a similar version of the document.

This initiative brought some changes but more is required.

It should be replicated for this election, and this time, hopefully presented to all the state governments in Malaysia.

We need to continue doing this to ensure that we are not forgotten. We must come together and speak in unison in order to have a louder voice.

Disabled people have been marginalised for far too long. Our need for an accessible built environment and public transport are often ignored.

The by-law for the provision of access for disabled people to public buildings and even the Persons with Disabilities Act have not been effective in protecting our rights.

We need to actively pursue our case and at the same time constantly campaign these elected representatives to support our cause.

On our part, many of us have not participated in the electoral process. Many have not even registered as voters.

This is also partly due to the inaccessibility of registration centres and polling centres.

Perhaps the Election Commission can look into easing the registration process for disabled people and extending postal voting to those with severe impairments.

Having said that, if disabled people want society to be inclusive, first and foremost, we have to play our part and exercise our right to vote despite the many barriers we will face.

For registered disabled voters, it is time to shrug off that apathy and realise that we have the power to change the country for the better.

As the second largest minority in the country, we certainly have the numbers to influence and sway these politicians if we play our cards right.

We must not allow this opportunity to slip away because it comes only once every five years or so. Make that one vote count!

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