“You don’t seem sick!” This is a general comment toward a woman suffering from an episodic disability, known as Fibromyalgia.
An episodic disability is a long-term health illness, highlighted by unpredictable and intermittent periods of wellness and disability. Research has identified twenty-seven unique conditions as “episodic”. These conditions create "pain-related, mobility, flexibility, dexterity, seeing, hearing, learning, developmental, memory, mental health-
related, and unknown” disability types. Out of five people, three of them do not fit the conventional view of disability, which requires those in positions of power to create potential profiles for those with “unknown disabilities.” It is the novelty of these disabilities that makes them a target of more discrimination than other disability types. In recent years, episodic disabilities have gathered more attention, in Canada, due to accommodations issues faced by persons who live with health conditions that are different from permanent disabilities. In other words, the needs of people with episodic disabilities cannot be accommodated by supports available to people with permanent disabilities, nor can they be fulfilled under the supports available to people without disabilities.
Episodic disabilities aren’t always visible and symptoms can be unpredictable and unexpected. These symptoms impact their ability to obtain and retain stable employment. As such, people with episodic disabilities live under constant uncertainty due to the nature of their disability, which leaves them vulnerable to unwanted choices, such as exiting the workplace, permanently, for fear of income and benefit losses. Moreover, episodic disabilities can present themselves at various times, and as such require constant applications for income replacement and accommodations. These procedures can be so tedious, that they can lead to feelings of disappointment for workers experiencing episodic disabilities. Consequently, making them more prone to quitting their job. These barriers become greater due to the lack of awareness around the term “episodic disabilities,” and the stigmas that can be attached to it. As such, many workplaces, government programs, or support services, either lack familiarity with the concept or are uncomfortable around the concept. As a result, they are unable to provide adequate accommodation strategies and emotional support for these people. Thus, the question is not whether people suffering from episodic disabilities can do their job, but how much "physical, emotional, organizational, programme and environmental factors impede their ability to seek, maintain, and negotiate the conditions of work.”
While the Human Rights legislation and its policies are adept in protecting against episodic disability discrimination, a gap exists when we look at their practical application in the workplace. It is, thus, important to create awareness in the workplace of possible bias and stigma (employers, other staff, workplace policies), associated with employees suffering from episodic disabilities, to foster a more inclusive interpretation and, therefore application, of the human rights legislation and policies in employment.
Everyone suffering from episodic disabilities should be aware of the protections that they can utilize to achieve the required accommodations.
Under the Canadian Human Rights Act, disability is defined as “any previous or existing mental or physical disability.” It, also, includes perceived disabilities when someone is believed to have a disability. Discrimination, based on these definitions, happens when a person is treated differently because of their disability. Such a different treatment results in direct (discriminatory treatment) or indirect (the equal application of policies or standards has adverse or discriminatory effects on some people) negative impacts on people with disabilities.
The duty to accommodate is mentioned in section 5 of the Act, and when an employer refuses to employ a person with a disability due to their disability, that person is protected under section 7 of the Act. The doctrine of the duty to accommodate outlines an employer’s duty to take necessary steps to make it possible for people with disabilities to do their work (up to the point of undue hardship).
Under section 15(2), undue hardship happens when the duty to accommodate creates high costs and risks to the health and safety of others, in the workplace. Section 7 of the Act holds that it is a discriminatory practice, “directly or indirectly, to refuse to employ any individual or, in the course of employment, to differentiate adversely about an employee, on prohibited grounds of discrimination."
But what is discrimination from a social context? Stigma, associated with discrimination, arises when community attitudes or values have been violated. For example, certain episodic disabilities, such as HIV or Hepatitis are viewed as contagious; therefore, a stigma is, often, attached to those suffering from such chronic diseases. In turn, due to this perception, people living with such conditions, find it difficult or chose not to disclose information, which in turn can hinder their access to, much required, services and support. Therefore, stigma creates a systemic disadvantage, in which decision-makers, managers, co-workers or supervisors fail to provide necessary resources.
The doctrine of duty to accommodate:
Under Part 1 of the Code, section 2(1) holds that “every person has a right to equal treatment concerning the occupancy of accommodation, without discrimination because of disability.” Section 8 of the Code states that employers “have a legal duty to accommodate the needs of people with disabilities who are adversely affected by a requirement, rule or standard.” Such accommodation provides for integration, full participation, equal opportunities, access and benefits for people with episodic disabilities. It is the employer’s responsibility to come up with effective accommodative strategies for employees suffering from episodic disabilities.
Application of Human Rights Laws in the workplace:
A lot of people with episodic disabilities experience difficulties in obtaining and retaining
employment. Due to the unpredictable nature of health conditions, many people living with episodic disabilities do not know when they can work, and have to take an absence of leave. This, in turn, makes the job of managers and staff, harder, as they have to protect private health information, by complying with legislation. At the same time, they find such information helpful, in enabling them to provide more adequate accommodations. Therefore, there is a misbalance between providing reasonable support and accommodations for employees living with episodic disabilities, while “maintaining health and safety obligations and productivity goals.” Moreover, employers have to, continually, come up with new ways to accommodate unpredictable health needs. Most managers or staff are not familiar with episodic disabilities, which, when combined with less accommodating support workplace systems (supports and accommodations cater, mostly, to the needs of people with permanent disabilities, rather than those of episodic disabilities) and a lack of communication strategies, can result in further discrimination. Therefore, it is important that as an employee suffering from episodic disabilities, you disclose information about your health condition to the employer.
Employers are concerned that a person with an episodic disability will not be able to remain productive, which can lead to financial loss for the company. Moreover, they are concerned that, creating appropriate strategies and individualistic accommodation plans, would cost a lot of money to the point of undue hardship. Because the government is not responsible for the costs of accommodations, the employer has the discretion to decide what value of costs is acceptable and what amounts to undue hardship. To accommodate, employers may need to incorporate new technology, modify the workplace, hire personal attendants or administration staff, pay for accommodations and restructure the business. In addition to these expenses, in the employer’s view, low productivity, due to absences and functional limitations, can account for undue hardship. Despite the Ontario Human Rights Commission holding that undue hardship can be reached, only, when expenses are “so substantial that they would alter the essential nature of the enterprise, or so significant that they would substantially affect its viability,” employers continue to choose the easy way out and not provide accommodations by using undue hardship as a justification.
There are three factors that employers should use when assessing undue hardship: costs, outside sources of governmental funding, as well as health and safety requirements. Yet, although the legal framework is sound, the experiences of persons with episodic disabilities have shown that most employers do not meet these requirements.
“I think we probably have the right policies and practices in place... But, I can tell you, I bet most managers are not familiar with them. Most managers don’t have the awareness to even identify or even think about it being something other than a performance issue.”
"I think we all wait until it becomes a problem...People don’t want to admit that there is a weak link or a weakness because they’re afraid that their senior manager is going to say, ‘just get rid of them, just fire them.’”
People with episodic disabilities are, often, subject to workplace hostility from managers or other co-workers because their accommodations are viewed as “special” due to the hidden nature of the disability. This discriminatory effect is due to a lack of appropriate communication strategies, education and awareness in workplaces. Because of ableist perceptions, comments can be experienced differently by someone who is disabled and someone who is not. Hence, the perspective of the disabled person should be heard, without justification or rejection, so that true awareness can be achieved.
Experience with employers and supervisors:
“They [employers or supervisors] just don’t have any sort of broad basis of knowledge upon which to base things. So, they are often coloured by stereotypes or predispositions and unknown discriminatory attitudes that they might have, and not even be aware of it.”
Experience with co-workers:
“I think where the frustration kind of boils over is...No one is actually being open so that their team and their colleagues understand that this is not going to be fixed. This is the way it’s going to be. And I think it’s easier for people if they have—the more information they have, the better it is.”
“They’re perceived as getting favourable treatment and then all the other co-workers are having to pick up the slack.”
“We have problems with...any invisible conditions. People say, well, there’s nothing
wrong with them. Why do they need accommodation? Look at them. They look
fine...The person is milking the system. They just want it easy.”
These quotes show that it is important to understand workplace communication-support processes from the perspective of those providing support to workers with episodic disabilities; but also from the perspective of those receiving the support. Therefore, it is essential to raise awareness among employers, the public, decision-makers and policy developers to understand that people with episodic disabilities require on and off support and assistance. To gain knowledge, people should learn about episodic disabilities (online courses on episodic disability or academia), and how to react to or address them (training that teaches about individualistic needs).
Sources Used for this Blog:
Canadian Human Rights Act. RSC (1985). c H-6.
Ontario Human Rights Code. RSO. (1990). c H.19.
Amita Dhanda. (2007). Legal Capacity in the Disability Rights CRPD: Stranglehold of the Past or Lodestar for the Future? Syracuse J. Int’l L. & Com. 34(2), 429.
Degener, T. (2014). A Human Rights Model of Disability. Routledge Handbook of Disability Law and Human Rights.
Degener, T. (2016). Disability In a Human Rights Context. Laws.
Episodic Disabilities Network. (2016). ‘Uncertain futures’: An episodic disabilities discussion paper. http://www.realizecanada.org/wp-con-tent/uploads/Uncertain-Futures-An-Episodic-Disabilities-Discussion-Paper.pdf.
Episodic Disabilities Network. (2014). About the episodic disabilities network. https://episodicdisabilities.ca/home.php.
Fowler, H. S. (2011). Employees’ perspectives on intermittent work capacity: What can qualitative research tell us in Ontario? Social Research and Demonstration Corporation. from http://www.srdc.org/media/10014/IntermittentWork_report_EN.pdf.
Furrie, A. D. (2010). Towards a better understanding of the dynamics of disability and its impact on employment. Ottawa, Ontario: Adele Furrie Consulting Inc. http://www.adelefurrie.ca/PDF/Dynamics_of_disability.pdf.
Gignac, Monique A. M., et al. (2020). Disclosure, Privacy and Workplace Accommodation of Episodic Disabilities: Organizational Perspectives on Disability Communication-Support Processes to Sustain Employment. Journal of Occupational Rehabilitation, 31(1),153–165.
Human Rights Digest. (2003). 4(2). CanLIIDocs 455.
Laura Kiesel. (2017). Chronic pain: The “invisible” disability. Howard Health Blog.https://health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360.
Law Commission of Ontario. (2009). Law as it Affects Persons with Disabilities. https://www.lco-cdo.org/wp-content/uploads/2010/10/disabilities_Disabilities%20Threshold%20Paper%20-%20July%202009.pdf.
Mcgill Center for Human rights and legal pluralism. (2012). Submission to the United Nations Committee on the Rights of persons with disabilities: Canada’s compliance with Article 12 of the Convention on the Rights of Persons with Disabilities. 17th Session.
Ontario Human Rights Commission. (2016). Policy on Ableism and discrimination based on disability. Toronto, ON: Human Rights Commission.
Peggy Proctor. (2002). Looking Beyond the Silo: Disability Issues in HIV and Other Lifelong
Episodic Conditions. Canadian Working Group on HIV and Rehabilitation.
Realize. (2019). Uncertain Futures: An Episodic Disabilities Discussion Paper. https://www.realizecanada.org/wp-content/uploads/Uncertain-Futures-An-Episodic-Disabilities-Discussion-Paper.pdf.
Sandra L. Fielden, Mark E. Moore, Gemma L. Bend. (2022). The Palgrave Handbook of Disability at Work. Palgrave Macmillan.
United Nations, General Assembly. Report of the Special Rapporteur on the Rights of Persons with Disabilities. Human Rights Council. 43rd session A/HRC/43/4.
Vick, A. (2014). Living and working precariously with an episodic disability: Barriers in the Canadian context. Canadian Journal of Disability Studies. 3(3).