October is National Disability Employment Awareness Month (NDEAM). The theme this year is “America’s Workforce: Empowering All.” This celebration dates back to 1945, when President Truman approved a Congressional resolution declaring the first week in October “National Employ the Physically Handicapped Week” (motivated in part as a response to the return of service members with disabilities from World War II). Nearly two decades later, the word “physically” was removed to acknowledge the needs and contributions of individuals with all types of disabilities.
One group of individuals that can contribute greatly to the workplace is workers with multiple sclerosis (MS). MS affects more than 2.3 million worldwide.
If you have met one person with multiple sclerosis (MS), then you have met one person with MS — as no two people’s experiences are the same. MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms vary from person to person and range from numbness and tingling, to walking difficulties, fatigue, dizziness, pain, depression, blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted.
Most people with MS are diagnosed between the ages of 20 and 50 — prime career years! — with at least two to three times more women than men being diagnosed with the disease. At this age, many people have already completed their advanced training/education, have been working and moving up the career ladder = they bring a wealth of experience.
Best Practice: Foster an Environment of Openness and Support
Disclosure can be very stressful for someone with MS, especially considering the symptoms listed above — oftentimes “invisible.” The reality is that hidden symptoms cause just as many — even more — limitations as visible ones. Employees may grapple with the legal reasons for disclosing: primarily to ask for an accommodation. But they may also consider the practical reasons for disclosure/not, including but not limited to:
- Perception by others “But you look so good” prevents acceptance of hidden disabilities as real
- Being seen as different or getting preferential treatment
- Am I being dishonest? Feeling the stress of not telling others
Disclosure can be positive:
- Reduces stress
- Educates others about MS and adult-onset disabilities
- Allows individual the opportunity to ask for accommodations now or in the future
- May be freer to examine health insurance and other benefits
- May simply feel more comfortable
- Stress: who do I tell? When? Will they tell others or keep my disclosure confidential?
- Fear of rejection…ultimate fear of losing job
- May fear being pigeonholed at work
- Don’t want to be seen as different or weak by others
- Might want to maintain privacy
Disclosure is a personal decision. If your employee comes to you with this personal disclosure, be sensitive and understanding.
Best Practice: Keep the Disclosure Confidential and Determine Who Needs to Know that Information
Now that you know, how can you best support people living with MS in the workplace? Many people living with MS want to work and continue to work despite their symptoms; many symptoms can be managed on the job with accommodations, such as:
- Computer and other forms of assistive technology
- Proper ergonomic work station set-up
- Arrangement of workspace by task frequency and priority
- Flexible work schedule such as telecommuting or altered hours
- Elimination of distractions/clutter that might impair attention and other cognitive functioning
Type of and need for accommodations may change over time as symptoms change, when a person experiences an exacerbation, or when the job situation changes. Variability of symptoms may require accommodations to change from time to time.
Best Practice: Be Supportive if Employee Discloses, but Requests No Accommodations at Present Time
Employees with MS are looking for employers who are receptive to disability and diversity. Even though self-identification and self-disclosure may be done for different reasons, employees are looking for forward thinking and inclusive employers.
Best Practice: Be Open to Questions About Employer-Sponsored Benefits and Protections, Including the ADA, FMLA and Disability
Understand that employees with MS may need to utilize the Family and Medical Leave Act (FMLA) and tap into the Americans with Disabilities Act (ADA) more often than employees without disabilities. FMLA can ease missed work during the diagnosis process, an exacerbation, a difficult new treatment and more. ADA provides support for disclosure and accommodations. There are many resources available — use them and share them:
- Job Accommodation Network, http://askjan.org, 1-800-526-7234
- ADA National Network, http://www.adata.org, 1-800-949-4232
- Employee resource groups; centralized accommodation fund
- National MS Society Accommodations Publication
Connect with National MS Society resources to help you attract, hire, support and retain people with MS: