Making Room in the In”

By Dr Sharon Syriac

“There is no greater disability in society than the inability to see a person as more.” –Robert M Hensel

The Holy Faith Sisters and Associates’ Christmas edition of Let’s Talk Nation Building, ‘Making Room in the In’, emphasised that our actions must strive to ‘make room’ to include rather than exclude others, particularly those on the fringes of society.

This lesson was powerfully and profoundly presented by Mary Bastien, clinical social worker, school counsellor and mother of 13-year-old Zahra, her daughter, who lives with profound multiple disabilities which require 24-hour assistance for all daily activities.

Through this example of a person with disabilities, Bastien illustrated how we often exclude people through our actions, language and “othering”, and construct barriers that set up an “us” versus “them” dynamic.

We often create services for “us”. We forget that the physical environment, for example, schools or churches in which these opportunities, spaces and events are facilitated, should be more inclusive and consider the needs of all.

Life as gift

Bastien shared that Zahra, her gift, arrived in 2009, bringing her life-altering experiences. Like any other parent, Mary had dreams for her Zahra regarding future activities, companionship etc, but during labour, her daughter suffered for oxygen resulting in cerebral palsy (brain injury), and thus constant caregiving was required.

As Zahra missed significant developmental milestones, Mary found herself having to grieve the loss of the perfect child and with it, her dreams for Zahra.

Meanwhile, those around her cast blame or ascribed to myths regarding Zahra’s disability. Some people responded with pity and sadness, others with regret, many with discomfort.

Yet this mother saw beyond the disability to her daughter – her gift. Valued. Precious. Mary recognised her Zahra as a person of dignity and worth.

Models of disability

Disabilities can occur anytime – before birth, during labour or throughout a lifetime, when accidents could render one “disabled”. Today, various conceptual models have filtered through the society’s psyche to understand its impact.

The models are endless, with varying emphasis. The charity model suggests that help must be rendered, while the medical model emphasises that disability must be viewed as a health issue. The social and biopsychosocial models emphasise the interconnectedness of several factors.

Therefore, when disabled persons cannot easily access certain buildings or beaches (Las Cuevas), seclusion or anxiety results. Often, the physical environment further disables the disabled.

Persons with disabilities must have access to living arrangements that showcase their abilities, rather than emphasise their limitations. They must have equal access to physical spaces as well as information, albeit easier versions of it. The design of communities and information systems must be considerate of both the differently abled and the able.

The human rights perspective

Vulnerable persons find themselves like a fragile frill on the fringe of a curtain – pushed to the edge of society. There, excluded and marginalised, their basic human rights are often unrecognised or ignored.

Bastien focused on the four key features of the human rights perspective. She argued that human rights are universal (everyone is born with them and are rightfully entitled to the rights to life, education, family, a family name etc.). These rights are inalienable (they cannot be lost – whether one is profoundly disabled or not).

These rights are indivisible and interdependent (one set of rights cannot be fully enjoyed without the other). Simply put, you cannot have the right to life, without the right to quality medical care.

True, persons living with disabilities are not a homogenous group since disabilities exist on a continuum with varying impact of impairment. However, all persons – including persons with disabilities – have the same universal, inalienable, indivisible, and interdependent human rights.

Consequently, everyone’s human rights must be respected and respect never assumes that ‘disability’ equals ‘inability’.

Language as disabling

Retarded. Special. Dumb. Cokey-eye. Broko-foot. Language is as disabling as any disability. We dehumanise others when we emphasise their disability and refer to them solely as that.

Words can empower or disempower. When we replace people’s names with their disabilities, smugly convinced that we are not throwing sticks and stones to break bones, we dismiss the effect of words and their capacity to wreak havoc and harm. Isn’t our picong pregnant with pain, at someone else’s expense?

Henceforth, our language must become kinder. Pay attention to its use because words can exclude and marginalise. They are the bricks that build walls which divide ‘us’ from ‘them’.

Reconceptualising human diversity

We need to rethink diversity. We have boasted that our ‘callaloo nation’ is a mixed, melting pot of flavours. Yet that variety, restricted to cultural expressions of food, music and ethnicity ignores human diversity in abilities.

Can’t we adjust our gaze to accept and celebrate our multiple range of abilities? Can’t we consider persons with disabilities a mere feature of human diversity?

Persons with disabilities are not the only group impacted by exclusion, yet in our quest to build communities of inclusivity as advocated in Archbishop Jason Gordon’s pastoral letter dated December 27, 2022, we must shift our perspectives.

See persons first, then the impairment. Yes, special needs are viable and important but focus more on creating spaces, opportunities, and events with a deep regard for everyone’s basic human rights.

Today, as individuals and groups, demand that the rights of all are met and do not just make the rights of the majority, the sole priority.