Accessibility must lead to inclusion and participation – Breaking Barriers – The Borneo Post – 16 November, 2014

Accessibility must lead to inclusion and participation
by Peter Tan. Posted on November 16, 2014, Sunday

Wheelchair user outside the cinema
Photo shows my first visit to the cinema after 20 years in 2005.

DO you remember cinemas of old?

Those were the days when discarded kuaci shells and other whatnots crackled under our feet as we gingerly made our way to the seats.

Our olfactory senses were often rudely assaulted by the malodorous cigarette fumes intermingling with the smell of urine seeping from the floor because some parents were too engrossed with the movie to take their child to the toilet.

The stench and trash aside, wheelchair users intending to watch a movie would have faced great difficulty. Entry into the hall was always hampered by a short flight of steps. We had to be carried in and then park ourselves in the aisle as there was neither space allocated for wheelchairs nor seats we could transfer to.

These were clear cases of inaccessibility and exclusion. No consideration was given to accommodate wheelchair users in any way. The inconvenience dissuaded me from going to the cinema for 20 years.

Accessibility in public infrastructure allows disabled people to live independently.

The physical environment and public transport system must be easy to use, seamless from point to point and free from obstacles and hazards.

Likewise, information and modes of communication have to be made available in different formats like Braille, soft copy and sign language to encompass the diverse needs and make-up of society.

However, accessibility is not the be-all and end-all of improving quality of life for disabled people. My following experience will illustrate this point.

My friends realising that I have not been into a cinema for the longest time suggested watching a movie while we were at a shopping mall one evening.

The ticket counter staff confirmed there was a space for a wheelchair inside the cinema. He further noted that the spaces were only available in selected halls.

Cinemas have come a long way since I was last in one.

Where they traditionally have a single screen showing one movie at a time, the advent of cineplexes has revolutionised the cinema-going experience with multiple screens showing different movies simultaneously.

With this development, the premises were also made more accessible. I could get into the hall without needing to be carried and finally had a proper place for parking my wheelchair. That was my first impression.

But a look at the seating plan showed that it was isolated from other seats and close to the screen. That meant I had to watch the movie separated from my friends and not given the choice to select where I wanted to sit, consequently decreasing the enjoyment of being with my friends as a group.

Watching movies is as much a social bonding activity as it is for entertainment. Since we wanted to sit together, they suggested I take a regular seat instead.

For that, they had to carefully manoeuvre my wheelchair down two steps narrow steps where I then had to be transferred to the assigned seat. I was pleasantly surprised to discover the carpeted floor was clean and the air pleasant despite the inconveniences.

Inclusion is the process of accommodating all people regardless of race, age, gender, impairments and other characteristics without restriction of any kind so that they can participate in an activity if they so wish.

Although accessible to a certain extent, the cinema failed to look into the aspects of inclusion. The segregation of wheelchair users would have deprived me of opportunities to interact with my friends while watching the movie if they had not taken the trouble to assist me.

It would be better if the cinema could allocate space for wheelchairs next to regular seats for us to sit beside our companions. A simple adjustment like this can make a lot of difference to the enjoyment of the shows.

Cinemas should not stop only at accommodating wheelchair users. It must be extended to people with other impairments as well.

Subtitles are crucial for deaf people to follow the story in movies. Fortunately, movies playing in local cinemas display subtitles; not specifically for the benefit of deaf people but it serves the purpose nonetheless.

On the other hand, the quality of subtitles leaves much to be desired. More should be done to improve the accuracy of the translations to give a better context of the happenings on the screen.

As far as I am aware, no cinema in Malaysia has audio description as an option. Audio description is a feature providing voice narration describing the actions, facial expressions and goings-on in non-verbal scenes and is streamed via wireless headsets.

Local cinemas have to seriously look into incorporating this option as it will greatly enhance the movie experience for people with visual impairments, especially in parts where there is little or no dialogue.

Having said that, I stopped going to cinemas again four years ago. I like the vantage from the last row and buy my tickets online. The ushers at the cinemas always insisted that I occupy the wheelchair space and my wife sit at the back even though I informed them I could transfer to the seat I had paid for.

After the umpteenth time of having to explain at length why I refused to be seated separately from my wife, I decided it was not worth the effort and have our weekend spoiled by the recurring episodes of frustrations.

These situations in cinemas are just one facet of the many problems disabled people have to contend with. Facilities, activities and services in schools, workplaces, parks and places of worship all have issues that require similar attention.

Most importantly, there is a need to move away from the traditional notion that accessibility is the sole goal to be achieved to make it convenient for disabled people.

The implementation of policies on accessibility need to lead to inclusion. Otherwise, it is just work half done. Ultimately, inclusion must culminate in participation in civil, social, economic, cultural, religious and political spheres.

The Convention on the Rights of Persons with Disabilities recognises that full participation in these spheres will result in the enhanced sense of belonging and bring about significant advances in the human, social and economic development of society.

Therefore in the structuring and delivery of accessibility, decision makers need to think with the end in mind that the objective is full participation. Disability rights advocates have to fully internalise this three-stage train of thought and then drive home the point to them.

When these decision makers are able to attain that level of reasoning and put it into practice, we can rest assured they have become powerful allies and the interests of disabled people in this matter will be well taken care of.

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Making hospitals accessible – a few steps at a time – Breaking Barriers – The Borneo Post – 9 November, 2014

Making hospitals accessible – a few steps at a time
Posted on November 9, 2014, Sunday

Participants of DET workshop presenting their action plan.
Participants present their action plan at the workshop.

HOSPITALS, with their high concentration of wheelchair users, are the last places disabled people would expect to face problems. This is where we go to first for treatments and follow-ups.
However, we’ve often had to contend with multiple barriers while there.

Looking for parking at most government hospitals is difficult on weekdays, more so accessible ones that disabled people can use because these are even more limited. This is one of the reasons why my blood pressure is always elevated when going for check-ups apart from the anxiety of having to wait for a few hours before getting to see a doctor.

A mother with a disabled daughter recounted one such experience to me one day. She drove into an accessible parking space near the entrance to the hospital. Just as she was about to open the boot to take the wheelchair out, a security guard approached them.

He told her she could not park there. The spaces with wheelchair symbols painted on the ground were reserved for vehicles with disabled drivers only. When she asked him where she could park, he told her to drop the child at the entrance and park elsewhere.

The suggestion of leaving a severely disabled daughter to fend for herself was unconscionable. What if she could not find parking after searching for half an hour? What if her daughter needed attention in her absence?

Her protests fell on deaf ears. He was insistent. That was the instruction from the management. Faced with the dilemma, she decided it would be safer to get a parking space first and then get her daughter out from the car. At least she would not be left alone and unattended.

From whatever angle we look at it, allowing one group of disabled people to use parking while denying another group with similar needs smacks of discrimination and goes against the spirit of inclusion that all disabled people have been fighting for.

Having heard too many similar complaints from disabled patients and their carers, a group of occupational therapists from the University Malaya Medical Centre in Kuala Lumpur were determined to resolve the problem.

They drew up a six-month action plan with the ultimate goal of getting the management to allocate more accessible parking spaces. If everything goes well with their proposal, an entire floor will be available for vehicles with disabled people going for their doctors’ appointments and therapies, regardless of whether they are drivers or passengers.

The plan was one of the four that were drawn up during the one-day Disability Equality Training (DET) workshop held last week. It was a collaboration between the hospital, Welfare Department and my training outfit.

Eighteen participants comprising medical officers, physiotherapists, occupational therapists and speech therapists from the Department of Rehabilitation Medicine went through a step by step process in getting to know disability from the perspective of disability rights.

The second group drew up a plan to equip the surau on every floor with chairs. This simple yet thoughtful gesture can make a lot of difference for people who cannot stand for too long during prayers. A suggestion to include instructions and materials for alternative methods of ablution was later incorporated into the plan as the tap for this purpose is located in a narrow space not accessible to wheelchair users.

The next two groups were concerned with the accessibility of training facilities for patients. The third group noted that the kitchen counter in the domestic room was too high for wheelchair users to use conveniently.

They proposed to either have the counter lowered or add another one that is lower, depending on the budget they could procure.

A heavy door can pose significant difficulties for patients with mobility impairments to move between rooms.

The fourth group proposed to make all doors in the wards easier to be opened. They plan to start with the door at the Independent Living Unit.

What I particularly liked about this workshop is that the participants being in the field of rehabilitation are acutely aware of issues that normally appear as minor to other people but may make or break the independence of their disabled patients.

With that in mind, they were meticulous with their analysis of the barriers in the environment and came up with ideas to improve the facilities or remove existing obstacles. All the four actions plans were feasible and can be realised within the six-month time frame.

They are the medical professionals who have been providing excellent outpatient rehabilitation services to me and countless other disabled people at one time or another. In all honesty, I dare to place the continuing care of my health in their hands without any reservation. It was therefore a privilege to be able to work with them in making the hospital more accessible.

The head of Department for Rehabilitation Medicine Associate Professor Dr Nazirah Hasnan was pleased with the outcome of the workshop. She has agreed to a review on the action plans after six months and has proposed three more workshops next year for the staff in other sections of the department. This will certainly keep me busy for a while.

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Of legacies, memories and a good Samaritan – Breaking Barriers – The Borneo Post – 2 November, 2014

Of legacies, memories and a good Samaritan
by Peter Tan. Posted on November 2, 2014, Sunday

Baby dresses made from pineapple fibre.
These pineapple fibre dresses are now likely over 80 years old.

MY mother was a bit of a hoarder, not the scary kind but of things that were of sentimental value to her. This can be seen from the things that she kept.

Among them were baby mittens she knitted for me, three tiny dresses made from pineapple fibre her mother hand-stitched for her and a rusty beat up cream crackers tin.

I brought these keepsakes along when I moved. Each item is a priceless gift from her. The dresses should be more than 80 years old now and are still in very good condition.

A blue plastic ice cream box has since replaced the rusty tin that held yellowed envelopes stuffed with old photographs, mostly black and white that were well preserved.

Just yesterday, I dug out the photographs for a book project I am working on. These were images of her taken through the years and dating as far back as the 1940s.

As I picked through them one by one, I tried to picture what life for her was like back then, piecing them together from the many stories she recounted whenever she was in a reminiscing mood.

When I was almost done with the sorting, I found several photographs of the time I was in the hospital, which opened another floodgate of memories. It was taken by the sister of a patient.

They had come all the way from Kuching for his treatment. Her name was Ah Moi. His name was Cheng Huat. I still remember them well after all these years because she was the most helpful person in the neurosurgery ward.

My mother did not know how to use the public payphone. Every evening, Ah Moi would accompany her to the lobby and help her make the call home to apprise my father of the situation.

She also seldom left the hospital. If she needed to buy something, Ah Moi would get it for her on the trips out to buy food and other groceries.

Most of us admitted to the ward were waiting for our turn in the operating theatre or recuperating from surgery. It was there that I witnessed people at their most vulnerable and human emotions at their rawest. Optimism and fear ruled our days.

We secretly cheered for those who were well enough to be discharged hoping that we could be next. On the other hand, someone could be there one day and gone the next. Uncertainties like that could wear down even the strongest.

There was a 10-year-old boy from Butterworth with an incontinence problem. He was accompanied by his mother. If his mother had not told us, we would not have known what was ailing him. He appeared healthy otherwise.

Typical of kids his age, he scampered all over the ward and would drop by my bed occasionally. His visits were welcome distractions from my anxieties.

I was immobilised by 16 pounds of iron pulling on my head. It was meant to realign my spine. The inability to move my head limited my sense of my surroundings. I heard more than I saw.

The occasional cries of a baby tugged at my heartstrings. My mother told me he had hydrocephalus, a condition where the head is enlarged due to abnormal fluid accumulation inside the skull. He seldom, if ever, had any visitor.

When I could sit on a wheelchair after surgery, my mother pushed me to his crib. My heart ached seeing him in that condition. The hospital must have been the only home he had ever known.

I reached out to stroke his tiny hand. He grabbed my finger. At that instance, we connected, the little one and I. Tears welled up in my eyes. That was the first and the last time I saw him.

I never knew what happened or where he was taken to after that. I did not want to know. I feared the truth. For days after that, I was expecting to hear his shrill cries. That would have indicated he was still around.

My mother and Ah Moi kept in touch for a few years after my discharge from the hospital but eventually lost contact.

Sometimes, I think of her and her brother, wondering how they are both doing and how lucky my mother and I were to be blessed by her generosity at a time when we needed it most.

I would cherish an opportunity to thank her personally for making my stay in the hospital with my mother more bearable. My mother would have had a difficult time coping had it not been for her.

Now that I have given more thought to the belongings my mother left behind, I realise how they have enriched my memories. I am sure they did the same for her.

That was why she put so much effort into keeping them in good condition for so long. Those were the links to her past and the people she valued.

They have now become my links to the past. I hope I can preserve them as well as she did, especially the pineapple fibre dresses and the old photographs that evoked so much in me.

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