Navigating a career in science with disabilities and chronic illness

Blog is written by Shannon DeMaria Ph.D., Research Ethics Training Coordinator, Office of Intramural Training and Education (OITE)

As October is National Disability Employment Awareness Month (NDEAM), this post is dedicated to exploring these topics as they relate to those who are planning careers in the biomedical enterprise.

First a note: this post is going to make use of the broadest possible to definition of disability, keeping in mind that many people do not self-identify as having a disability or being disabled. [The language surrounding these topics is complex, but does not have to be a barrier to discussing them.]

As scientists at the NIH, we can probably all rattle off how the scientific question we are working on relates to human health. As humans ourselves, we may also be touched by some of them. The fact is there is no barrier between us, the diseases we study, the patients we see, and the rest of the population. That means that at some point in our life, or for the entirety of it, many of us will find ourselves navigating a serious illness, chronic illness, disability of some sort (which may be temporary or permanent), as well as having friends and loved ones who may experience the same.

According to the 2012 U.S. Census, 19% of Americans reported having some sort of disability. Among scientists that number drops to ~5% (reported by the National Science Foundation). It is likely that this is an underestimate at least partially driven by a decrease in self-identification. However, it also reflects an underrepresentation of people with disabilities in STEM careers. As such, it can be difficult to look around and see this aspect of ‘yourself’ represented in the scientific population. This may lead one to wonder: do I belong here? Is a scientific career compatible with “X”?

The answer is yes, but keeping in mind that there are many complexities and uncertainties that may arise. There are many factors to actively consider as you plan for your future career, and aspects of your own and your loved ones’ health should be among them. Some topics may be addressed proactively, avoiding what could have been predictable problems later. Some difficulties may prove to be unavoidable, and building breadth into your current training and flexibility into your future plans would help to minimize the stress and disruption that they cause.

Consider the following (non-comprehensive) list of issues that you may wish to build plans around:

  • Determining if you are comfortable with disclosure.
  • Identifying your needs.
  • Self-advocacy.
  • Forming meaningful networks.
  • Wellness.
  • Future career considerations.
  • Finances.
  • Exploring and Choosing science careers where you will be able to utilize your strengths or where your work can be reasonably accommodated.

Each one of these topics is complex and could easily span an entire article to themselves. They also apply broadly to the scientific workforce! This post cannot comprehensively cover them all but is meant to take a look at the larger picture and to provide a launching point for future conversations.

Here are some useful resources.

As scientists and humans, we should strive towards the goal of creating a culture of inclusiveness, beginning with visibility and discussion. And, in the end, remember that you are not alone.

OITE career services are available to NIH intramural trainees only. Check with your home university or college and utilize the personal, career, and professional school advising resources they offer to you.

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