• March 11, 2022

Building inclusive dementia-friendly communities with those living with dementia

Building inclusive dementia-friendly communities with those living with dementia

Building inclusive dementia-friendly communities with those living with dementia 1024 732 Dementia Singapore

Ms Emily Ong observing one of the wayfinding murals at Toa Payoh Bus Interchange.
(Photo: SBS Transit)

 

As the leading social service agency in specialised dementia care, Dementia Singapore aims to advocate for people living with dementia and their families, highlighting their abilities and reducing dementia stigma. We support and listen to those impacted by the condition, encourage discussions and in turn evolve and pilot new initiatives.

While Singapore works towards a dementia-inclusive society, it takes a collective effort from businesses, transport operators and community places to contribute to the ultimate goal. And it becomes truly inclusive when these conversations involve those living with dementia. This will give them the opportunity to highlight their remaining abilities and empower them to make a difference, despite the condition.

We hear from Emily Ong, Dementia Advocate and Acting Co-Chair of Dementia Alliance International, who shares about accessible public transport in Singapore for people living with disabilities, such as those living with primary progressive aphasia and Posterior Cortical Atrophy (PCA), a rare form of dementia.

A passionate advocate, Emily is also living with young onset dementia. She was involved in the mural wayfinding project in Kebun Baru, and most recently, in the Find Your Way initiative with SBS Transit, where she was one of the advisors to improve wayfinding in Toa Payoh Bus Interchange.

 


This article was first published on the website of Dementia Alliance International (DAI).

 

Accessibility on Whose Terms

“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 above resonates with me as someone living with dementia, a type of acquired disability. In most circumstances, my 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 2021, I had been working as an advisor with two public transport providers in Singapore, to make the concourse area of two bus interchanges more enabling and accessible for people with disabilities, not limited to dementia. 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 PCA may find themselves in a disabling situation when the place they visit does not offer communication access options which prevents them from appreciating the exhibits in the museum. This is a type of ‘situational disability’, which makes it difficult and almost impossible to participate on an equal basis with others, leading the person to feel excluded and marginalised.

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.

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.

For example, it would be difficult for a person living with Primary Progressive Aphasia to get help from staff at the Passenger Service Counter if there are no options for 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 customer service personnel is unable to understand the individual with speech impairment disability.

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 in the building
  • Use: Being able to use the services provided in the building

 

Experience at a Bus Interchange

The concourse area of a bus interchange, which usually has high traffic flow, high noise level, myriad 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 at the Passenger Service counter, struggling to hear what is said 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.

There are times when I become overly anxious due to disorientation, and I cannot articulate well because the muscles around my 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. It would be helpful if transport service providers can have bus route leaflets presented in a clear and simple language instead of the ‘one-size fits all’ standard version.

 

Ways to improve

Here are some observations 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:

  • Reaching the station is not an issue because the pathway is well-linked and there is sufficient signage to provide directional guidance.
  • Entering the station is not an issue because there are built-in ramps and lifts 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 handy. Accessible Help Points buttons like the ones used in the London Underground are helpful in the event that someone with a disability needs assistance from Passenger Service and should be a distance away from the service counter.

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, in order 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.

 


Other related links:
Finding My Way Home
Find Your Way

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As a donor, you can make a difference to the dementia landscape.
Make a contribution now.