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Talking to an Employer About SMA

Talking to an employer about spinal muscular atrophy (SMA) can be scary. But many people find that open communication with their employer improves their work life. For example, your employer can help modify the work environment to make your job easier.

Certain laws protect you from discrimination in the workplace, and your employer wants to help you succeed at work. But you are not required to tell your employer anything about SMA. The decision whether and how to talk to your employer about SMA is personal. Here are some tips for talking to your employer about SMA if you choose to do so.

How do I talk to my employer about spinal muscular atrophy?

It can be scary to talk to your employer about SMA. It is normal to want to prove yourself at work without revealing how SMA affects you. And you may not know how your employer will react if you ask for accommodations.

Not everyone is comfortable talking about SMA to their employers. However, your employer wants to help you succeed. So there are some benefits of talking to your employer about SMA. For example, telling them about SMA can:1,2

  • Make work less stressful
  • Improve your relationship with your boss
  • Prevent your boss and colleagues from making false assumptions about you
  • Prepare them for absences caused by symptoms or doctor’s appointments
  • Facilitate workplace accommodations that make it easier to work

There are laws that protect you as an employee with SMA. However, workplace discrimination still exists. You are not required to tell your boss about SMA. But if SMA affects your work, then it may be a good idea to talk about it. Here are some tips if you decide to talk to your employer about SMA:1-3

  • Focus the conversation on how SMA affects your job
  • Emphasize what you need to succeed at work
  • Be specific and honest about limitations
  • Give your employer resources to learn about SMA
  • Find support from coworkers when you need help
  • Prioritize your health and well-being at work
  • Talk to human resources if you do not want to talk to your boss
  • Ask human resources about your rights as an employee

What are some workplace accommodations I should ask for?

The Americans with Disabilities Act (ADA) requires employers to provide “reasonable accommodations.” These accommodations can help you perform your job. The specific accommodations vary depending on the needs of each employee. As your needs change over time, your workplace accommodations may also change.2,3

Talk to an occupational therapist or social worker about what accommodations are right for you. Then talk to your boss or human resources department. They can help implement these changes. Some examples of workplace accommodations that may help people with SMA include:4

    More flexibility to work from home
  • Flexibility in scheduling work days or work hours
  • Frequent breaks for stretching
  • Different desk height or computer setup for wheelchair access
  • A speech-to-text program to reduce typing fatigue
  • An assistant to help with daily tasks
  • Accessible bathrooms
  • Easy access to meeting rooms, break rooms, and other amenities

How can employers support employees with SMA?

As an employer or manager, it is your duty to support employees who have chronic conditions or disabilities. It may be hard to know how to support an employee with SMA, especially because SMA affects everyone differently. The first thing to do is to create an environment in which employees can openly discuss SMA. Let them tell you what they need in order to succeed.5

Understand that employees with SMA want to succeed, just like everyone else. However, symptoms of SMA and doctor’s appointments may make aspects of work more difficult. Simple accommodations can improve their experiences at work. Talk to human resources about what accommodations you are legally required to offer.5

Be aware of how stigma affects self-esteem and self-image for people with SMA. Employees with SMA often worry that their bosses and coworkers see them as lazy or unmotivated. Social stigma surrounding disability can cause heavy guilt for employees with SMA.5

Proper support for an employee with SMA can help them excel. Here are a few ways to support your employee:5

  • Manage your own personal emotions when an employee tells you they have SMA
  • Make sure that your definition of success does not require overworking
  • Educate yourself about SMA
  • Ask your employee what you should know about SMA
  • Ask your employee if they would like to discuss SMA regularly
  • Talk to human resources about services and accommodations that are available
  • Avoid bringing up SMA in group meetings or public situations
  • Trust your employee when they are advocating for their own well-being

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