One of the first things a survivor of a TBI must do is create the story you tell yourself and you tell others.
“Coming out of the closet can be risky,” Freeman said, “But you can be vulnerable and strong.”
Start with positive talk. People attending the seminar came up with phrases such as:
- Reclaiming my life
- I am a survivor
- Life is great.
“You can come from a place of strength and tell a story supports that,” Freeman said. “State your strength.”
Take the time to decide what your story is and make it positive. In telling your story you have control by deciding what you want to divulge and writing down your story will help you be clear. And remember you only need a few sentences. You don’t need to tell your whole story.
An example of this: I’m recovering from a concussion. I’m better than what I was and I’m getting better every day. One of the cognitive tests I took revealed that I was “wicked smart.” So I’m able to handle my life.
Freeman asked, why should you share your story? And some of the answers from the participants were insightful:
- To support and empower others.
- To understand me.
- To let family and friends know why I may get fatigue.
- To get it off your chest.
- To raise awareness.
- That it’s OK to talk about.
Employment is a trickier road to travel. Some say don’t disclose, other say “coming out of the closet” was the best thing they did when they disclosed their TBI to their employer or potential employer. This is an area where people want a black and white answer and it is really “gray”—depends on you, your situation, your willingness to take a risk, your choice to only want to work for an organization that you CAN disclose to, etc.
Freeman said you have to be comfortable and to look at the essential functions of the job. Can you do the job? See how the company responds to others with disabilities. Do you want to work for a company that will not accommodate you? And in the current job market where unemployment is low, people with disabilities can be empowered.
“There are a lot of factors in disclosing to an employer or potential employer,” Freeman said. “You must decide. But first make sure it’s the job you want.”
General Disclosure Principles
- Disclosure is always a voluntary personal decision
- Never disclose another person’s disability without his/her permission
- The setting or context may determine one’s comfort level with disclosing
- There are consequences to the decision to disclose or not to disclose
- There are effective and ineffective ways to disclose
- Avoid medical terminology, jargon, acronyms
- Define TBI in context of functional limitations that may impact job performance
- Identify strengths and abilities that offset functional limitations
- Use practical common language
- Present the disability as a characteristic
- TBI is a source of pride, not shame
- If the disability is obvious, assume that disclosure has taken place
- Script and rehearse your disclosure
- People with and without TBIs are hired based on their capabilities
- Disclosure dialogue should always relate to job duties
- Employers want to know how and why you are the best person for the job
Download: Disclosure Handout
By Eliza Marie Somers