What is common between World AIDS Day and International Day of Persons with Disabilities? It is not only the month that marks both of these days (December 1 and December 3 respectively). There are also other connections that can be recognized through a social justice and intersectional approaches.
An estimated one in five Canadians (or 6.2 million) aged 15 years and over had one or more disabilities that limited them in their daily activities, according to the 2017 Canadian Survey on Disability. Disability is often associated with the International Symbol of Access, a wheelchair, however many disabilities are invisible and episodic. Disability is increasing in prevalence due to ageing populations, trauma, accidents and the increase in chronic health conditions, including HIV. Disability results “from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (UNAIDS, 2017).
The disability experienced by people living with HIV is often episodic in nature, associated with unpredictable fluctuating periods of good and ill health. The Episodic Disability Framework, derived from people living with HIV, includes four dimensions of disability: symptoms and impairments, difficulties carrying out day to day activities, challenges to social inclusion and uncertainty that can be influenced by extrinsic and intrinsic contextual factors (O’Brien et al., 2013).
Episodic disability can be challenging for the person living with the disability and their family members as well. People with episodic disabilities are sometimes well and sometimes disabled and these unpredictable phases often occur without warning and last for uncertain periods of time.
Some of the issues that people with disabilities and/or people with HIV/AIDS might share include:
- Stigma and discrimination. Some people with episodic disabilities, such as HIV and mental illness, live with conditions that are highly stigmatized. Stigma can make it much harder to access the services and supports that people need to manage their conditions as they are fearful about being mistreated or misunderstood. Stigma is closely related to ableism that refers to discrimination against people with disabilities and can manifest itself in practices and attitudes that explicitly and implicitly devalue the experiences of disabled people.
- Difficulties with obtaining/retaining employment and increased economic vulnerability. People with disabilities and their families are economically more vulnerable due to exclusion and discrimination in the labour market, lower employment rates and lower household incomes.
- Problems qualifying for disability income supports/Low rates of disability assistance. Episodic disabilities are often invisible and are, by nature, unpredictable. This means that it can be hard to qualify for programs that view disability as a static state and therefore require that the person claiming the benefit be totally and permanently disabled. Even if you qualify and receive the disability income assistance, the rate of the assistance still remains far below the poverty line.
These are just a few examples of common challenges shared by people with different disabilities and health conditions. Including disability in the HIV response requires commitment to address underlying inequality and discrimination across all sectors. Disability as a cross-cutting issue in the response to HIV calls for broader social, cultural and economic development that is person-centred, is disability-inclusive and addresses the unique barriers that face people with disabilities and people living with HIV.
The province of British Columbia is working on developing its Accessibility Legislation. During the last year’s public consultations, a number of organizations provided their feedback to what this legislation should look like. In one of the consultations held by Pivot Legal Society, participants defined accessibility as dignity, having a home, getting the services that I need, navigating everyday situations, and being included even if I don’t have much money. I think these response embrace what accessibility should look like. The collective voice from people who are impacted by disability and disabling conditions can contribute to a stronger provincial legislation. We can start building this collective voice by recognizing the connection between two days on the calendar.
Questions? Feedback? Get in touch!
Alfiya Battalova, Evaluation Manager
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