People with Invisible Disabilities: Employment, disclosure, and managing Presentation to the Episodic Disabilities Forum Canadian Working Group on HIV and Rehabilitation Toronto, January 29, 2016

Outline What are Invisible Disabilities? Managing social information about invisible disabilities Predicaments of disclosure Workplace practices that support disclosure and accommodation Knowledge on benefits and costs of accommodations Managing effectively

What are Invisible Disabilities? Not a clear-cut clinical category or distinct social identity A number of physical and mental impairments and conditions that vary in origins, severity, permanence or episodic nature Are physically founded, socially constructed, and medically diagnosed People with invisible disabilities are a diverse group with a range of needs and capacities Common feature: the condition or impairment is not easily seen or readily evident to other people

Significance of invisible disabilities An international study estimates that as many as 40 percent of persons with disabilities have invisible impairments (Matthews and Harrington 2000) A Conference Board of Canada report states: “Not all disabilities are visible; in fact, most are not visible at all.” (Brisbois 2014, 5) Invisible Disabilities Association in Canada, non- profit group founded in 1999; comparable organizations exist in the UK and USA

Examples of invisible disabilities Anxiety disorder Fibromyalgia Arthritis Heart conditions Asperger’s syndrome Hepatitis C Chronic fatigue syndrome HIV/AIDS Learning disabilities Crohn’s disease Mood disorders Depression Multiple sclerosis Diabetes Repetitive strain injury Dyslexia Respiratory ailments Environmental sensitivities Sleep disorders Epilepsy

Managing social information about invisible disabilities Passing: when a person with a significant hidden impairment seeks to appear to others as being non-disabled Covering: efforts by a person with a hidden disability to keep their impairment from dominating everyday interactions and defining that person Disclosing: making an invisible disability visible in the context of employment to employer, manager, co-workers, HR staff, union Teaching: explaining (defending) to others the nature and impact of one’s hidden impairment

Predicaments of disclosure: conceal or reveal? Relates to human rights - the right to decide when and to whom to divulge that one has a disability Disclosing an invisible disability is the route to a workplace accommodation process, yet disclosing can be a highly risky decision with many possible disadvantages and advantages Survey of people with invisible disabilities in BC found 88% had a negative view of disclosing their disability (Reeve & Gottselig 2011) Ontario study found disclosure varied by type of impairments: people with visual impairments most likely to disclose; then, people with cognitive or learning disabilities; least likely, people with psychiatric diagnoses (Wilton 2006)

Workplace practices supporting disclosure & accommodations Recognize duties and responsibilities of accommodation are shared among the persons with a disability, employer and, where applicable, a union or professional body Give relevant information in timely ways in accessible formats, and post workplace policies on accommodation/diversity/equity on web In recruitment processes, provide space and time for individual to talk and possibly disclose Have a plan and procedures in place when a person does disclose

Knowledge on benefits and costs of accommodations: findings and gaps Accommodation studies on direct annual costs conclude average costs are not high ($500 or less) Employment studies and testimonials emphasize benefits of employee dependability and loyalty and of savings to employers from lower turnover rates Presenteeism studies of on-the-job productivity losses or costs attributed to work limitations of employees with a disability; varies by health condition (primarily US studies) Absenteeism studies on costs to firms of medical or health-related missed days from work (mostly US studies) Conference Board of Canada survey found only 46% of the organizations tracked absences and just 15% measure the direct costs of absenteeism (Stewart 2012)

Making accommodations by Managing effectively Many workplace accommodations for people with disabilities (visible or invisible) are actually about managing effectively rather than making exceptions; about being creative and finding solutions: Having clear expectations Open dialogue and regular communications Consult with human resource or disability management specialists as needed Options available for flexible work hours, work at home or telecommute Assist employees returning to work after an absence due to disability Evaluate accommodations as to their effectiveness in job performance

Thank you Questions and comments are welcome Michael J. Prince Lansdowne Professor of Social Policy mprince@uvic.ca