My Dream for a Truly Inclusive Society

Supported by the SG50 Celebration Fund, “Beyond 50: Re-Imagining Singapore” is an e-book compiled by Mr Joachim Sim featuring the insightful and imaginative ideas of Singapore thought leaders about Singapore’s [...]

Supported by the SG50 Celebration Fund, “Beyond 50: Re-Imagining Singapore” is an e-book compiled by Mr Joachim Sim featuring the insightful and imaginative ideas of Singapore thought leaders about Singapore’s future. We bring you the chapter contributed by Ms Chia Yong Yong, President of SPD, in which she shares her hopes for an inclusive Singapore through various life stories.

Singapore has achieved much progress and prosperity since our independence. Our citizens have access to better housing, healthcare, education and employment opportunities. However, even as we celebrate our successes, there remain vulnerable groups within our society for whom we should take greater responsibility, and whom we should equip to take greater responsibility for themselves.

Singapore ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) on 19 July 2013. It is Singapore’s commitment to treat persons with disabilities equally with the rest of the community, with dignity and respect, and with access to rights.

Whilst the ratification was an act of the Singapore government, the commitment requires the concerted and unified efforts of the government and residents, both individuals and corporates, and persons with disabilities and those without disabilities.

Perhaps I could share some personal perspectives.

Never alone
I often thought about the people working in the sheltered workshops at SPD. If they had the same opportunities that I had, would they be in open employment in mainstream society instead, having been empowered to hold good jobs?

I have peroneal muscular atrophy, a degenerative muscular condition that affects my four limbs and limits my mobility. I am a wheelchair user. I am also a lawyer and serve as a volunteer in the social service sector.

As a child, I had weak feet and fell frequently. I was 15 years old when the diagnosis was made, but not before I had undergone several surgeries to correct my ankle malfunctions. My motor skills and ability to walk deteriorated over the years, and eventually after a bad fall in my 20s, I became reliant on a wheelchair.

But I never felt alone. I grew up with the blessing of a loving and supportive family, and caring and supportive friends and teachers. My parents made tremendous sacrifices to send me to university. My teachers taught me as they would any child without a disability, and disciplined me as they would any child. My reliance on friends grew over the years as my limbs weakened progressively. By the time I was in junior college and university, friends had to help me buy food, carry my bag and provide support as I walked and climbed stairs.

It was not easy. The infrastructure of schools in those days did not cater for universal access. Classrooms for secondary three and four students at Paya Lebar Methodist Girls’ School were on the third level. There were no elevators. When I was promoted to secondary three and four, the school principal gave my class a room on the ground floor. Friends helped me to the laboratory and chapel on the second floor. Catholic Junior College had stairs to classrooms, lecture theatres and the canteen. The NUS Law Faculty at Kent Ridge had stairs everywhere, and steps leading to some lecture theatres had no handrails. Canteens were far from the faculty and we had to navigate slopes and more stairs.

There was not much that could have been done in terms of the infrastructure then. However, apart from the assistance that I needed, I grew up like any child without a disability. My family, friends and teachers accepted me just as they would any person without a disability.

Such acceptance led me to believe that I was no different from anyone else. Looking back, I am convinced that while physical accessibility is important, community inclusion is critical. It was that inclusion that built my confidence and sense of self-worth. That inclusion gave me equal access to opportunities as my peers, helped me to become who I am today and allowed me to contribute back to the community.

We are one of us
I am glad that awareness of disability issues has increased over the years and people are becoming conscious and attentive to the needs of persons with disabilities. Prime Minister Lee Hsien Loong previously shared the government’s vision and plans for building a fair and inclusive society, where every citizen has a rightful place and the opportunity to fulfill his or her aspirations.

To be truly inclusive, society first needs to acknowledge and respect the inherent dignity and worth of each individual. We should recognise that we are born with different abilities and different limitations. We should nurture each individual’s ability with reasonable accommodation and mitigation of limitation, so that each of us can realise his or her potential and play a part in enriching the lives of others. We should treat persons with disabilities with respect as fellow human beings.

We had a case of a father who suffered from a motor neuron disease, with progressive degeneration of parts of his nervous system, and who eventually was rendered incapable of performing his daily living activities. He had two sons who were his only caregivers. The caregiving was a strain on the young men, and well-intentioned neighbours and relatives had urged the father to move to a nursing home. He chose to stay at home, even though it meant that he would be alone during the day until his sons returned in the evening, and even if it meant that his sons might feel the strain of caring for him. Some said he was being a burden to his sons. The father explained that he wanted his sons to come back to a ‘home’ and not an empty house, a home where their father is around, where there is someone they could turn to or talk to, someone who shows them care and concern.

Perhaps we are sometimes too quick to judge. The father in this case demonstrated his fatherly love and showed us that, like everyone else, persons with disabilities are willing to and capable of shouldering responsibilities and making sacrifices for those whom they love.

Never say die

Apart from being perceived as a burden, persons with disabilities are frequently considered as weak and needy, whether financially, emotionally or psychologically. Yet, in the course of our work, we have met many who are determined and are pillars of strength to those around them.

Zi Heng is one such person. He was in university when he had a diving accident that left him with severe spinal cord injuries. As a result, he became paralysed in most parts of his body. He lost his bladder and bowel functions, lost the ability to perspire and as a result he would sometimes feel too hot or too cold, and easily became breathless and dizzy due to his weaker lungs. He became almost completely dependent for his daily living activities. But he maintained a high spirit to encourage his loved ones and friends so that they would have the strength to face and resolve problems in their own lives. He challenges himself to be equipped with new skills, and to seek opportunities to grow and empower himself to become a better person. He is now studying to become a teacher.

Each of us has different abilities and constraints. Whether or not the constraints are physical, intellectual, emotional or psychological, or even purely circumstantial, we should learn to rise, in our own ways, above our constraints to be an encouragement and a role model to others. But we cannot do it alone.

Caregiving: burden, responsibility or joy
None of us, whether with or without disabilities, can achieve much on our own. Very often, the persons closest to us play an important and immediately impactful role.

Jin Zhu is one of our beneficiaries. She has congenital muscular dystrophy, a condition present at birth that leads to progressive muscle weakness and degeneration. Jin Zhu has little control over her movements and needs constant care in her daily living. Even meal times are challenging as she has difficulty chewing and swallowing because of her weak muscles. However, Jin Zhu has a guardian angel in her elder sister Sharon, who is her cheerleader and strength.

Sharon and Jin Zhu have an age gap of 14 years. At the age when her friends were active in after-school activities such as shopping or going to the movies together, Sharon took it upon herself to care for her younger sister. She could have continued her studies at a polytechnic, but she switched to the Institute of Education (ITE) as the less intensive curriculum allowed her more time to care for Jin Zhu. She sought permission to be released an hour earlier each day to rush to fetch her sister home from school. She also saved her already limited allowance to buy presents for Jin Zhu. After graduating from ITE, she took a part-time job and employed a domestic helper to supplement the caregiving for Jin Zhu. When she found the caregiving being compromised, Sharon resigned from her job and took it upon herself to care for Jin Zhu full-time. Through Sharon’s love and sacrifices, Jin Zhu completed her GCE ‘O’ level education and is now pursuing further studies in a polytechnic.

Sharon’s selflessness made a positive impact on her sister’s future. Perhaps to some, Sharon’s putting aside of her studies, career and even marriage prospects for Jin Zhu is too big a sacrifice. However, Sharon feels that looking after Jin Zhu gives her a sense of purpose in life and she gets satisfaction and joy from giving her sister happiness.

Many helping hands
Taking reference from the stories that I shared above, it is noteworthy that for as many protagonists as one might identify, there are many others in the background, behind-the-scenes, without whom the positive impact on the person with disability would have been lessened. Indeed, community inclusion is not a one-man show. Unlike charity, which is a one-way flow from donor to beneficiary, community inclusion is a stakeholder partnership for the betterment of society.

I envision the Singapore of the future as one that is truly inclusive, one in which we respect and accord dignity to each person of the community, regardless of his or her ability or limitation. It is a society that fosters social and psychological acceptance of the disadvantaged within our community, and equips and empowers them and their caregivers, and in which each member of our community is able to grow and to serve one another.

However, the journey towards community inclusion will be long, and unless we harness the challenges in this journey, they will become obstacles in the way.

The challenges
Persons who are disadvantaged are often perceived as necessarily dependent on charity. They are perceived as lacking in ability, motivation or ambition. Those with disabilities, for example, are generally referred to as “disabled”. Such self-defeating misconceptions held by the community, and often by those who are disadvantaged themselves, constrain efforts to equip and empower the disadvantaged towards financial independence and mainstream integration.

Increasingly, there is a growing expectation that the government must do more. While I agree that the government needs to do more, the “more“ that the government does will not be sufficiently efficacious, if it works alone. There is also the question of “what” the government should do more of. Even as the voices calling for public assistance grow louder and more demanding, and the expression of entitlement takes a bolder tone, I cannot help but feel that there is another challenging misconception of what constitutes “collective responsibility”.

Often, we assume it means the responsibility of the government, the social service sector or someone else. We forget that “collective” includes ”me”. We demand services for the community or for our own convenience, yet we resist the setting up of service provider facilities within our neighbourhoods. We demand assistance, but we forget our personal responsibility.

Demographic and other environmental challenges have also grown in complexity. With a higher incidence of acquired disabilities (mainly attributable to lifestyle and a greying population), increasingly complex and pressing community needs, higher expectations of beneficiaries and caregivers, and more stringent requirements for good corporate governance, the pressure and demands on the social service sector have grown exponentially within the last decade.

Today, the social service sector serves beneficiaries across disability types and community needs, providing a wide spectrum of services such as social worker support and counselling, rehabilitative therapy services, early intervention programmes for children, step-down community care, day activity centres, sheltered workshops, assistive technology prescription, employment training and support, mainstream education support, special education, shelters and protective care, to name some of them.

To address the growing demands, voluntary welfare organisations (VWOs) have created or scaled up programmes and facilities, stepped up their recruitment of qualified staff and professionals, and invested in talent development.

Correspondingly, the funding needs of such VWOs and the sector have grown, while funding sources have remained within the conventional revenue model of public agency funding, donations and (low) programme fees.

The increased demands on the social service sector have also placed greater pressure on its manpower requirements. Most VWOs face big challenges recruiting and retaining staff due to limited financial means to remunerate competitively, vis-a-vis other sectors. There also appears to be, in recent years, an increasing number of people joining the sector, not out of passion to serve, but for employment. The difference in the motivation will, in my view, impact the level of commitment and dedication of those who work in the sector. This situation poses yet another challenge ultimately to the quality of the services rendered to beneficiaries, given that the sector is currently not in a position to pick and choose.

In the midst of these challenges, the social service sector remains a loosely-woven fabric, comprising many VWOs, each pursuing its own causes. Instead of drawing on the core competencies of each other, some VWOs attempted to replicate existing services, often with lesser effect.

Recasting mindsets
As we move into the future, we need to recast the mindsets of all the stakeholders.

Community mindset
The community should recognise that:
• Persons who are disadvantaged are as much a part of the community as those of us who wear glasses. We should acknowledge that we are born with different abilities and different limitations. As a community, we accept one another and make reasonable accommodation for each other, so that to the greatest extent possible, each of us can exercise equal rights to participate in the community;

• Competent, professional and compassionate staff and professionals are key to the welfare of beneficiaries, and acknowledge the principle of fair remuneration for such staff and professionals. It is a fact that for many years, those who work in the social service sector are generally paid less than their peers in other sectors. I, however, cannot think of any good reason why they should continue to suffer the inequity of remuneration vis-a-vis their peers. Fair remuneration is necessary to recruit, retain and reward those who serve. An outflow of talent from the sector is ultimately detrimental to beneficiaries; and

• Direct services to beneficiaries can be compromised without good corporate services support and any restriction by donors to apply donations only to direct services is incongruous with the demand for good governance practices and the delivery of efficacious direct services to beneficiaries.

Beneficiary mindset
Persons who are disadvantaged should accept that we have different abilities and different limitations, and should develop our abilities and manage our limitations. We don’t always have to rely on charity. We can, to varying extent, break out of the charity trap. We can do so by assuming responsibility for our own well-being and future and those of our dependents. We must aspire to be better than ourselves. Let us accept what the community offers, and to the best of our ability, rise to the occasion, yes, rise beyond ourselves, to serve the community.

Sector mindset
The social service sector must exercise foresight and be visionary in how it is to serve the community in the next lap. If it merely extrapolates from the needs of the community as currently perceived, it would be in danger of lagging behind in service delivery. It must be the soul leader of the community, leading with compassion, conviction and courage.

Within itself, the social service sector must achieve cohesion in its diversity. VWOs must remember that we exist for our beneficiaries, and not for ourselves. As such, there should be greater collaboration among VWOs, in the sharing of expertise, staff and other resources, to deliver better and adequate services for the benefit of our beneficiaries as a whole. We must use our diversity for their benefit.

In order to ensure that beneficiaries are adequately served and taken care of, the sector needs to employ and retain the right people. In this respect, I had earlier argued for fair remuneration. On the other hand, those who join the sector should remember that they are serving members of their community, and not just holding a job.

In addition to employing good people, the sector must learn to empower and equip caregivers and volunteers to supplement the services in the sector. With greater cross-community caregiving, we reduce undue reliance on resources that can be better employed where professional inputs are required.

It is also important that the sector should be financially sustainable in the long run. Currently, VWOs derive revenue from donations, public agency funding and programme fees. Donations are largely influenced by economic factors, with growing competition for the same pie. Public agency funding has its limitations, being generally limited to programmes that can be mainstreamed at a national level. Programme fees have traditionally been low and highly subsidised.

To be vibrant and effective, the sector and the relevant VWOs must be sufficiently nimble (and funded) to respond to and provide services in newly identified service gaps. It requires its own funds to do so, as it is often difficult to justify public agency funding to move into “uncharted” water. Yet, responsiveness to needs is an important aspect of social service.

At the VWO level, we therefore need a change from the current mindset that programmes may not be offered on a profit-generated basis. It is my view that as long as the VWO remains faithful to its mission and vision and continues to help the needy, it may offer programmes to generate a profit, and to practise price discrimination between beneficiaries who are able to pay for the services and those who require subsidies.

Government mindset
The government should move beyond equipping the sector with expertise and funding. It should provide the resources, expertise and framework for the sector to move towards self-sustenance in the long term.

Above all else
Community inclusion of persons with disabilities is an important philosophy that must continue to underpin our society. Inclusion is not just about universal access to infrastructure. Inclusion is not about what society can do for an individual or a group of people. It is about how, vis-a-vis each other, we accommodate and accept what we are able and not able to do. It is about what we as members of the community can respectively and jointly contribute to it.

I believe that the recasting of the various mindsets will result in the qualitative empowerment and enablement of beneficiaries and caregivers in our community, and in their integration into mainstream society, thereby dramatically impacting our community towards inclusion.

Every citizen should have equal rights and opportunities regardless of his or her abilities or limitations. Community inclusion helps to make this happen. And I look forward to the day when we become a truly inclusive society.

The e-book “Beyond 50: Re-Imagining Singapore” can be downloaded from here.