March is Brain Injury Awareness Month. According to the Brain Injury Association of America, every year, 2.6 million people have some type of brain injury as a result of trauma, stroke, tumor, or other illnesses.
On Wednesday, March 10th, three Traumatic Brain Injury (TBI) survivors who are part of the Brain Injury Association of America's speakers bureau: Dr. Kelli Gary, Cheryl Green and David Grant, joined LINCS for a synchronous Zoom conversation on learning from TBI.
On Thursday, March 11th, these three panelists will again join us for an asynchronous follow-up discussion. Whether or not you joined us for the Zoom conversation, you're invited to be part of this discussion. We will begin the conversation on 3/11/21 at 9AM EST. Feel free to drop in and hear from our invited guests, ask questions, and share resources to help support learners recovering from brain injury.
Disabilities and Equitable Outcomes Moderator
Welcome to our second day of discussion around learning from Traumatic Brain Injury (TBI). Our invited panelists are three Traumatic Brain Injury (TBI) survivors who are part of the Brain Injury Association of America's speakers bureau: Dr. Kelli Gary, Cheryl Green and David Grant. I've asked them to follow-up on several questions from our synchronous Zoom discussion yesterday.
If you missed that event, you're also invited to join us here in learning about our panel's experiences learning after brain injury. If you attended yesterday's event, feel free to add your own questions or comments about what you heard. In either case, we hope you will learn more about supporting survivors of brain injury in your programs.
I want to thank Kelli, Cheryl, and David again for sharing their experience and lessons learned with us.
1. Yesterday's conversation brought up a lot of food for thought. One of them is the language we use around brain injury. David mentioned that there are differences in how the general population sometimes reacts to hearing 'TBI' versus 'concussion.' I wonder if we can talk more about how you each refer to your injury, and the importance behind others using the language you model for them when talking about your disability.
2. Cheryl brought up the importance of going beyond the disability label to learn more about individuals' specific need for accommodations. I wonder if any of you can share an example of how adult educators and service providers might elicit this information once a learner has disclosed their disability?
3. Kelli mentioned that disclosure can be a teachable moment for some people with a brain injury. I interpreted that to mean that the person with the disability can educate others about their disability, and that non-disabled peers can educate the person disclosing with resources that may be helpful. I wonder if anyone has a disclosure experience that was especially positive? If so, what helped make it a positive experience?
4. Each of you shared the secondary trauma of a post-injury neuropsychological evaluation. Given the testing requirements that adult education also requires, what advice do you have for reducing learners' testing anxiety, and using testing data to support their learning recovery?
5. We also heard about your experiences with cognitive rehabilitation, its value in your learning recovery and the challenges to accessing it. Would you tell us more about cognitive rehabilitation, what it is and where we can learn more about it?
A colleague of mine who attended emailed me the following after the presentation: "The piece about neuro psych evals really struck me--we have a way for students to get learning evaluations and I'm often torn (and tell the students) that it represents a snapshot and hot a holistic view....I feel like these types of assessments often do traumatize our students! Luckily, I met with a student yesterday who said the evaluation validated her concerns, and she said the evaluator was gentle and explained how the tests work. He's a new evaluator for us, and they are not always so thoughtful."
It's so incredibly valuable to remind people that it's a snapshot and that these evaluations are done under completely artificial conditions. In fact, some mild TBI impairments don't show up because we can do things fine in a quiet, controlled room, but cannot do them under the cognitive load of the real world's pace and noise and multi-tasking. If the evaluator can repeatedly remind the learner of these two things (at a minimum), I think that could help with anxiety.
But it's also crucial to hear these stories, that sometimes the documentation of impairment is deeply validating. I also felt validated with each test section that I failed, not because I wanted the impairments, but because I wanted someone to take me seriously. I'm so glad this college has an evaluator who's gentle and explains things, and glad that this student got something she really needed from it.
Cheryl, I'm so glad that you shared this anecdote from your colleague. Learners can have very different reactions to being evaluated, whether we're talking about neuropsychs or reading assessments.
As a vocational evaluator for state vocational rehabilitation programs, I've gotten into the practice of always prefacing every assessment with the comment, "there's no failing this assessment." I also repeat this throughout the process and when reviewing results with a client.
I try to avoid the word 'test' whenever possible. That word is a trigger for a lot of folks. Even when the word 'test' is in the name of an assessment, I tell the client that we're not using it as a 'test,' but to help us set a baseline of what they know, what they may want to work on in the future, and for us to learn what supports may help them in a work environment.
"I try to avoid the word 'test' whenever possible." Mike, that is a great mindset! When I think of a "test," I think of a pass/fail scenario. If I can't pass, then I certainly will fail. We would all be better served to use verbiage like "setting benchmarks." It sets what is essentially a starting point, something that can be built upon.
I did not get to mention that when I finished inpatient rehab after my TBI, my neuropsychologist said I tested at a 1st grade reading/math level. They suggested that I go to a community college or get a trade. I refused to do both and was so offended that I stopped going to neuropsychology. Sometimes health professionals can really trample your dreams.
Agreed! To see how far you have come is such an inspiration. I tested in the bottom 5% for complex problem solving and verbal memory. Like you I was told to settle for less. Like you, I steadfastly trusted my instincts and rebuild a new life. The myth that we, as members of the brain injury community, are incapable of learning needs to be shattered. In my advocacy work, almost daily, I hear of so many others who were told what we were told. It takes longer to learn new skills. As you eloquently noted yesterday Kelli, we can learn and acquire knowledge. It just takes time.
Kelli, there's an incredible article I have read a million times by Jan Gelech and Michel Desjardins called "I Am Many: The Reconstruction of Self Following Acquired Brain Injury." https://www.researchgate.net/profile/Jan-Gelech-2 . In that article, they give some beautiful examples of how health professionals must take responsibility for the possibility they can trample our dreams. It's a great article, and I've met Dr. Desjardins. He takes it very seriously that people with TBI are to be respected in our dreams, wishes, and interpretations of ourselves.
Cheryl, thanks for sharing this research article. It's a lot to digest, but I was struck by the complexity of post-injury identity development. I know that we just touched on the subject of cognitive rehabilitation yesterday. I wonder if any of you can speak about if, and how, cognitive rehabilitation played into your post-injury identity development?
I love this question, Mike! Cognitive rehab played no role in my post-injury identity development. This is partly because my clinician provided very inferior services and was very demeaning to me. More so, though, I was also involved in the disability arts community at the same time, and that's where I began to shape my post-injury identity through politics, art, and culture. I know that might be an overly simplistic answer, but COVID head is making me not think of as much detail and clarity as I usually have. I think the question is so important!
Kelli, yesterday you mentioned cognitive rehabilitation as something that greatly benefits many persons recovering from a TBI. While the neuropsych evaluation was not a useful part of your recovery and rehabilitation planning, I wonder if you can speak more to what was helpful in supporting the develop of a plan based on your professional goals? Did cognitive rehabilitation play a role in helping you achieve your professional goals?
I too have read Neuropsych evals that characterized people by grade level, and the message can be so damaging. I work in a Community College where we contract out for the evaluations, and I tell students, as Cheryl said, that it is just a snapshot. I am often troubled by the feedback given, too--recently an evaluator told a student that they may want to look into career counseling because it will be difficult for them to work in their chosen field (health care). I talked to the evaluator, who said it was just a recommendation--but the student heard that they would not be able to be successful in the field (not in classes) which is a severely problematic statement. Before I worked for a college, I did worksite assessments, and I know that accommodations are usually small and very do-able--they just require some creativity at times. I want to thank all three of you for bringing up your experience with these evals--you validated my concern about them over the years. I also want to thank you all for pointing out what we can do as educators--we all need reminders--to believe people, break down steps, repeat, etc. And thank you for you comments about self esteem and good days and bad days.
Great question about the language we use around brain injury. Discussed on yesterday's Panel discussion, I have found that there remains a social stigma around the term "brain injury." Now in my 11th year as a brain injury survivor, I've found my way in terms of how to bring this into a conversation.
In the vast majority of my interactions, both professionally and personally, it never comes up. There are times, however, that I do share about my past and current challenges. Describing myself as someone with long-term challenges from a concussion a decade ago has yet to alienate anyone. In fact, it is often an effective conversation starter.
Social stigmas still exist for brain injury survivors, based largely on the unknown - and because it pushes people out of their comfort zone, they are more inclined to simply detach because of that discomfort. Ongoing education of the general public is the best solution for this.
David, thanks for elaborating on this point. Social stigmas can be a significant barrier for many adult learners. Words are an important tool in dismantling these stigmas. I wonder what advice you have for adult educators working with learners with brain injury to help eliminate these stigmas in post-secondary learning environments? What are the best ways to be an ally to the TBI community?
Knowledge is the best remover of stigmas. There are a myriad of trusted online resources (Like Brainline.org) that can provide insight and information about challenges faced within the brain injury community. I would encourage educators to learn as much as they can about brain injury. In the decade since my own injury, we've moved from the proverbial Brain Injury Dark Ages into a world where meaningful information is easily found. As a society, we have made gains, but still have a long way to go.
I really loved this panel yesterday--thank you all for organizing and speaking. I want to point out a couple of things--Zoom now has auto generated captions, but they have to be enabled by the host (go to live captions). Then everyone will see them--or they can turn them off. Auto captions are not perfect by any means, but they are surprisingly accurate. They shouldn't replace a human transcriber, though, if you have an accommodation request.
Also, it would be really helpful if you sent the slides in advance so people can read them over and/or access them with a screen reader. It is also helpful to read the slides aloud.
Thanks, though--I look forward to more programming from this group!
Phyllis, thank you for pointing out Zoom's auto generated captions option. I will relay this to our technical support team and hope to ensure that we're using this feature to make future presentations more accessible. We welcome your feedback. It helps us all to learn as grow as a community.