Tag Archives: Emily Ong

A More Inclusive Public Transport System by Emily Ong

 

 

In 2021 we observe World Alzheimer’s Month #WAM also now referred to by many people and organisations as Dementia Awareness Month #DAM and World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

Today, we hear from board member Emily Ong from Singapore has written her second article of her personal experience of public transport in Singapore, which can easily be applied to public transport accessibility for people with dementia globally.  Her first article was about accessibility.

Thank you Emily, for your continued advocacy for all people living with dementia.

A More Inclusive Public Transport System in Singapore

By DAI board member and dementia advocate Mrs. Emily Ong

Image source: Emily Ong

Since the introduction of the Enabling Masterplan (2012-2016) in 2014 and ratification of the UN CRPD in 2013, the Singapore government has put in measures to improve the environmental accessibility and progressive removal of barriers to ensure full and effective participation of people living with disabilities in their social life and development, and one of which is the public transport system.

In 2019, Singapore was awarded The Asia-Pacific Special Recognition Award by the International Association of Public Transport (UITP), an international transit advocacy organization for its efforts in making the public transport system more inclusive.

The two efforts were;

  1. Heart Zones are designated areas for the elderly and visually disabled commuters at MRT stations and bus interchanges, and
  2. [email protected] which provides wheelchairs for the elderly commuters and those with physical difficulties.

Hence, I have been looking forward to the opening of new MRT stations along the Thomson-East Coast Line because it is a direct line from my place to my mum’s place in Woodlands. This would mean that I no longer need to change the MRT line which at times can be a cause of confusion for me because from Bishan to Woodlands is a different floor from Bishan to Marina Bay. We decided to take from Upper Thomas MRT station to Springleaf MRT station to have our breakfast on a Saturday morning.

Unfortunately, the second level of the escalator to the gantry area has this flashing light reflection on the escalator steps that are rushing towards you. It is like everything is moving but in opposite directions, making it hard to judge the steps and creating a very discomforting visual experience for me.

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

 

This can be potentially dangerous for people with photosensitive epilepsy as it might trigger a seizure if the escalator is moving fast during normal busy hours. It was the first thing that I informed the officer when I saw SMRT people inside the train. I am happy that my concern is heard and taken seriously.

I am very pleased with the overall experience. The wayfinding signages are prominent positioned and big enough to read from a distance. Color contrast is heavily emphasized throughout from signages to platform seats.

 

And with the recent initiative – “May I have a seat please” lanyard & card, in April this year, which aim is to make rides more comfortable for those with invisible medical conditions such as have issues in maintaining their balance where there is jerking along the ride or with chronic pain arthritis are much applauded.

Singapore has come a long way in becoming more inclusive in the public transport system. As a consumer of public transport services and a dementia advocate, I would say, the application of the Universal Design concepts and principles has produced solutions that are functional, usable, and intuitive.

Another big contributing factor is the effort put in to collect feedback from commuters and the public engagement exercise where the public can share their views on the Land Transport Master Plan for 2040 and beyond. I hope that other mainstreaming accessibility issues will too have more and more participatory spaces to enable people with disabilities either born or acquired, visible or invisible, to have their voice heard and influence decision-making.

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Conversations on the impact of Stigma on QoL of people with dementia

 

 

 

In 2021 DAI observes World Alzheimer’s Month #WAM which is also now referred to by many people and many organisations as Dementia Awareness Month #DAM or World Dementia Month, by highlighting stories about, or written by our members, who all live with a diagnosis of dementia.

On Day 2 of WAM, and as a part of our Dementia Awareness Month blog series, we invite you to listen to DAI board member, Mrs. Emily Ong from Singapore, in conversations with other people living with dementia, on the impact of stigma  on the quality of life (QoL) of people with dementia.

Conversations on the impact of Stigma on QoL of people with dementia

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With more than 50 million people living with dementia, and the Coronavirus pandemic causing everyone to operate in a virtual world, our work has never been more important.

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About DAI: Dementia Alliance International (DAI is a non-profit group of people with dementia from around the world seeking to represent, support, and educate others living with the disease that it is possible to live more positively than advised with dementia. It is an organization that promotes a unified voice of strength, advocacy and support in the fight for individual autonomy, improved quality of life, and for the human and legal rights of all with dementia and their families.

Accessibility on Whose Terms

Accessibility on Whose Terms?

By DAI Board member, Emily Ong from Singapore.

“Museums disable me as a viewer. Everything, from the artworks to the explanatory texts, assumes a subject who uses their visual sense as a primary way of knowing, and I am a nonvisual learner who requires a different frame of reference.” – Carmen Papalia.

The quote resonates with me as someone living with dementia, a type of acquired disability. In most circumstances, my dementia condition does not limit my ability to participate fully in life. I am as capable as others without disabilities in carrying out my role as an advocate, advisor, and educator. However, I am often disabled from doing what I want or need to do because the mainstream environment can be disenabling and inaccessible for people like me.

In the past week, I have been working as an advisor with two local public transport providers in making the concourse area of two bus interchanges more enabling and accessible for people with disabilities, not limited to dementia per se. An accessible and enabling environment improves the quality of life for people living with disabilities, and it is a prerequisite for a truly inclusive society.

People with visual impairments like Carmen Papalia and those with Posterior Cortical Atrophy (PCA), a rare form of dementia, would find themselves in a disabling situation when the place they visit does not offer communication access options and prevents them from appreciating the exhibits in the museum. This is a type of ‘situational disability‘ that makes it difficult and almost impossible to participate on an equal basis with others and this leads to exclusion and marginalization.

The UN Convention on the Rights of Persons with Disabilities (CRPD) states clearly that persons with disabilities have the same rights as all other persons. To ensure persons with disabilities can claim their rights, services and facilities must be accessible and provided without discrimination.

© (2002). Michael F. Giangreco and Kevin Buelle. Farside cartoon. Reproduction and communication of this material is permitted under the Fair Dealing provision of the Canadian Copyright Act.

Very often the concept of ‘accessibility is narrowly defined when it comes to environmental design. There is a need to understand that an environment is made up of different domains and they are interconnected.

Take, for example, a person living with Primary Progressive Aphasia, would not be able to get much help at the Passenger Service Counter if there are no options of other modes of communication other than speaking. The person will not be able to benefit fully from the improvement of the physical accessibility of a place if the message cannot get across and be understood between the individual with speech impairment and the customer service personnel.

Good accessibility is built around the principle of an unbroken chain of movement, highlighted by the ‘RECU’ (Reach, Enter, Circulate, Use) concept:

  • Reach: Being able to get to the service you wish to use
  • Enter: Being able to enter buildings
  • Circulate: Being able to move about inside buildings
  • Use: Being able to use the services provided in the building

Let’s take the concourse area of a bus interchange, which usually has high traffic flow, high noise level, lots of information including advertisements, can easily cause cognitive and sensory overload for people like me. Practically every sound goes through my ears without much filtering and you can imagine the struggle I have when I seek assistance over the Passenger Service counter. I struggle to hear what was said to me because of the lack of sound-absorptive materials around the area. Hence, I avoid the Passenger Service at all costs and prefer, to ask for assistance from passing commuters if possible.

There are times when I become overly anxious due to disorientation, words are hard to be articulated as the muscles around the mouth tense up. In such a situation, I would prefer writing over verbal communication. A self-help kiosk that is easy to use and with a friendly interface would come in handy. Being able to access information is a huge part of maintaining independence for any individual.

However, the panel information board at the concourse area of a typical bus interchange is overloaded with information and font size that is too small to be handled by a brain that is cognitively impaired. It would be helpful if transport service providers can have bus route leaflets presented in clear and simple language instead of the ‘one-size fit all’ standard version.

Based on my experience as a commuter who heavily depends on bus and Mass Rapid Transit (MRT) services to get around doing my advocacy work independently, I would say:

  • Reaching the station is no issue because the pathway is well-linked and sufficient signposting to provide directional guidance.
  • Entering the station is no issue because there are built-in ramp and lift that I can take to overcome my visuospatial perception issues.
  • Circulating within the concourse area is usually a challenge for me if there is an absence of useful pictures or graphics to help me form a mental image of the place when I try to orientate and navigate around. Sometimes, the design and location of the facilities within the concourse area is non-intuitive and demands much effort to understand in order to find my way around.
  • Usage of the services and facilities for me is currently satisfactory with slight information inaccessibility. Alternative formats of route maps and guides such as audio maps, and big print maps would be useful and handy. Accessible Help Points buttons like the ones used in the London Underground are helpful in the event someone with a disability needs assistance from Passenger Service but far from the service counter or in the washroom area.

To sum up, accessibility involves removing the physical, communication, attitudinal, and institutional barriers faced by people living with all types of disabilities, including dementia.

However, to address the accessibility issues the presence and involvement of people living with disabilities in the accessibility project is indispensable and has to be on all levels: awareness-raising, dialogue, policy definition, advice, and assessment.

#Hello, my name is Emily Ong

Wow, it is already Day 9 of Dementia Awareness Month / World Alzheimer’s Month #WAM2019!

Unlike 2018, we are taking the weekends off, so this series is an ‘almost’ daily one!

Today,  we are privileged to share Emily Ong’s story, one of our newer members who lives in Singapore.  Thank you Emily, we greatly appreciate you sharing your very story of being diagnosed with dementia, therefore your personal vulnerability with us all. Many people with dementia  find that by sharing with others, they find strength, and give others hope.

Image source: Emily Ong

Hello, my name is Emily Ong

June 2017 (the exact date I could not remember already) I have the most scariest experience of my life when I asked myself -“What do I need to make French toast?” – when it has always been my family usual breakfast. All that I remembered was bread and the equipment I need was a skillet.

I tried so hard to recall but NOTHING was retrieved.

It was like my brain has a virus attack and the French toast file has been corrupted. The “French Toast” episode marked the beginning of my “new” life that I am gradually learning to understand and manage.

By April 2018, I have done 3 Montreal Cognitive Assessments and the last score was 17/30, numerous MRI scans and one lumbar puncture were done but nothing conclusive, and one FDG-PET scan that showed significantly lower uptake of glucose in the thalamus and the cerebellum region. During this period I was misdiagnosed as having Fatal Familiar Insomnia, a type of Prion disease, and subsequently, as a psychiatric problem (depression?), and then as Alzheimer’s disease.

Each diagnosis brought along so much misery and emotional impact on me and my family. Life was emotionally unbearable, and I cried almost every other day!

I could not stop asking myself, “What’s wrong with me? Am I going crazy? Were my problems real?

At the age of 51, I was finally diagnosed with provisional fronto-temporal dementia. It was a great relief to know that my mind is sound, certainly not having a mental illness but a neurocognitive disorder.

It is a comforting and wonderful feeling to know that your doctor finally heard you and your struggles, rather than generalised your symptoms as mood swings, anxiety disorders and even depression. Though further tests are necessary to confirm which variants, I feel empowered because I can now move on and develop a support plan that include joining support groups to assist me functioning at my optimal level on a daily basis.

Early intervention is something very dear to my heart because that has always been my life mission in my work with special needs. Ever since then I have joined the Alzheimer’s Disease Association (ADA), Singapore and Dementia Alliance International (DAI).

I also set up a personal blog to raise awareness through sharing my journey with dementia and things I learnt about the neurocognitive disorders; participate in two research projects under the National Neuro Institute, Singapore; and going to undergo training to become self-advocate for YOD under “Voices for Hopes” program.

Without the support from my family and the new communities where I find solace in, it is rather unlikely that I can be so emotionally strong and positive as I am now.

My new friends taught me that there’s still life after the diagnosis because life can still be purposeful and beautiful with dementia.

Emily Ong  © 2019

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