By Executive Director, Tammy C. Yates
“Transformation towards sustainable and resilient society for all” is the theme for the International Day of Persons with Disabilities (IDPD) 2017; a day commemorated across the globe today. This theme focuses on the enabling conditions for the transformative changes towards inclusive society for persons with disabilities, as envisaged in the United Nations (UN) 2030 Agenda for Sustainable Development, as well as the UN Convention on the Rights of Persons with Disabilities (UN CRPD).
HIV is often referred to as an illness that can be episodically disabling, but there are many other examples of conditions that may result in episodic disability, including multiple sclerosis, lupus, arthritis, some forms of cancer, diabetes and mental health conditions, amongst others. When a person is living with an episodic disability, periods of good health may be interrupted by periods of illness or disability. The timing and length of these periods can also be difficult to predict.
The unpredictable nature of episodic disabilities often makes them more difficult to manage in terms of employment. For example, a person with multiple sclerosis may not be able to work more than two days in a row, due to fatigue. Others, perhaps with some form of cancer, may have to wait for the side effects from medications to wear off before being able to work, making regular office hours challenging. The effects of episodic disability are often strikingly similar. For example, people experiencing episodic disabilities can face significant employment and income support issues because of uncertainty around their often-unpredictable personal health situation. At Realize, we saw these similarities and recognized that it was time to bring people together who represent the interests of people living with many different episodic disabilities, to strategize and come up with some important solutions.
As we did roughly 15 years ago when we first began our work on episodic disabilities, Realize is bringing together the traditionally separate worlds of HIV and disability with a new sector based on present day realities, namely, the gerontology sector, as people living with HIV begin to see those senior years that they originally never dreamed that they would live to witness. Many of them, however, are now aging with disabilities that may not be related to their HIV status, but rather can be attributed to the usual aging process.
Many of these ‘long term survivors’ as they are called, feel that the HIV movement is moving on without them, but they also don’t feel ‘welcomed’ neither the ‘aged/senior’ population, nor the senior services that support the elderly, nor the ‘disability movement’. Resilience has long been a force that these ‘long term survivors’ have prided themselves on. At times, however, that resilience can wear thin, when ones feels marginalized from the very segments of the society you expect that you should be able to identify with the most.
The UN CRPD encourages all UN Member States, Canada included, to strengthen the role of persons with disabilities, including people living with episodic disabilities, as agents of change, through the removal of barriers and the provision of equal opportunities for participation. Governments are encouraged to strengthen the resilience of society through improved infrastructure, cities and responses to climate-related and natural disasters.
The transformation towards sustainable and resilient societies provides an opportunity for persons with disabilities to address their concerns and challenges through their full and active participation, together with other stakeholders, in the design, development and implementation of affordable and innovative solutions to the barriers they face.
Transformation takes place in many different ways e.g. systems transformation, physical infrastructure change, policy amendments, to name a few; but fundamentally, what is the most important transformation is the transformation of the heart.