People with Invisible Disabilities: Employment, disclosure, and managing

1. 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

2. 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

3. 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

4. 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

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

6. 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

7. 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)

8. 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

9. 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)

10. 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

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