The first Sunday of Advent (December 3, 2017), fell on the International Day of Persons with Disabilities. The Advent of palliative care for people with disabilities was heralded in Monday’s Gospel reading of the Roman centurion mentioning to Jesus that his “servant lies at home paralyzed, and suffering terribly.” Jesus healed the servant without (a) being asked, or (b) even seeing or touching him, a technique palliative care practitioners have yet to master. The story can still inspire us to meditate, however, on how we can improve the availability of palliative care for persons with disabilities.
We must begin by asking people with disabilities what services they need to face life limiting illnesses, and how they would like to access such care. We need to ask, what does “healing” look like for you? Perhaps it begins with being seen, heard, and made visible by the rest of the world that does not yet have a disability. The vast majority of people with disabilities are not “paralysed and suffering dreadfully,” like the centurion’s servant in the Gospel, but the vast majority are invisible.
Until my sister Ruth had a stroke and was confined to a wheelchair, I didn’t give a thought to how disability un-friendly most cities are (I pushed her around the Baltimore neighborhood) or how negligent and disorganised the US health system is toward ageing women with disabilities, even when they have
plenty of resources and insurance!
Speaking of how the Convention on the Rights of Persons with Disabilities can support the right to palliative care, Maria Soledad Cisternas Reyes, now UN Special Envoy on Accessibility and Disability, said at an event at the Social Forum in 2016,
The right to palliative care is not subject to progressive realisation. Palliative care becomes a fundamental pillar for the right to life and integrity of the people who need it, and is not limited only to the exercise of their right to health.
From another perspective, palliative care is also essential for the exercise other rights such as freedom of expression and opinion, access to information (Art. 21), as well as enjoyment of the family environment (Art. 23), and inclusion in the community (Art. 19). Like the civil rights listed above, these are subject to immediate realisation and respect, and palliative care is a key factor in their enjoyment
Along these lines, the focal point and coordinating mechanisms for implementation of the Convention must develop actions specific to the promotion of palliative care, which also must be monitored by the supervisory mechanisms at the national level (Art. 33). Today, we are at a crucial moment for implementation of the Sustainable Development Goals (SDGs) and the Agenda 2030, with the motto “leave no one behind”. Therefore, also in the instruments concerning social development we can find a strong foundation of support for the promotion, development and implementation of the palliative care at the national level.
Advent cannot come too soon for persons with disabilities who need palliative care. The Palliative Care Association of Uganda is doing a wonderful job working with the deaf community in that country,
and the European Association for Palliative Care is working with community groups to provide palliative care for persons with intellectual disabilities.
This Advent is just the beginning. We must do more for those paralyzed with suffering if no one is to be left behind as the Sustainable Development Goals (and the Gospels) proclaim.