“Your brain injury isn’t real.” “You just do what you want.” “You use brain injury as an excuse.” These are the messages people with brain injury receive, overtly or covertly, from people (family, friends, ministers, doctors, aquaintences, anyone) who do not believe them. What effect does it have on a person striving and struggling to function as fully as possible no matter the obsticles to be told they are pretending, faking, or exagerating their brain injury? Devistating. Horrific. Sometimes life altering. Always, damaging.
No one understands brain injury. Not the world’s leading neuroexperts. Not the brain injured person. Not family or friends. No one. Yet my years of ministry to others with brain injury and their caregivers, as well as my own expereinces with doctors, ministers, family, friends, and aquaintences, have revealed just how common it is for people to believe they understand brain injury. They don’t, but out of their ignorance and arrogance they take actions, make decisions, and say things as if they do — and this can spread their ignorance and arrogance — aka prejudice — to others. Believe it or not, but the brain injured person really has physical damage and it CAN cause the oddieties you see that seem to make no sense.
First, if you are a loved one, or doctor, or minister, or healthcare worker, or simply someone wanting to understand what doesn’t seem to make sense about brain injury — please, please, please, choose to be humble. Recognize that you do not know about brain injury no matter what you think you know. Realize that there is only one “expert” in any given person’s brain injury — them (the second being their caregiver). Realize it is virtuous to not understand rather than misunderstand.
If someone sent you this link it may be because they thought you should see that you aren’t alone in encountering prejudice from people who do not understand brain injury but believe they do. Or, it could be they are attempting to tell you that you are prejudice about brain injury in a way you do not realize and are asking, begging, you to choose humility instead.
Millions of people every year are effected by brain injury. Of those, some small percentage are not able to return to normal activities after 1-2 years. Of those unable to return to normal activities, some small percentage are “high functioning” in whatever way is unique to them. These are often the people that make no sense to many folks who encounter them. The higher the functioning, the greater the apparent discord between what they can and can not do. These folks struggle and strive to engage with the world despite the obsticles their brain throws in the way. They often focus on what they can do, learn to manage their “brain budget” and do amazing things, even as they can’t do seemingly simple things. It looks weird. It doesn’t make sense. Get over it. You are not the expert you want to think you are. Please, please, please be humble.
If you choose to persist in saying things and making decisions based on your prejudice that people with brain injury don’t _____ or do ____, therefore this person must be exagerating, faking, or gaming the system … you become yet another (and very unnecessary and very harmful) barrier to them healing and functioning as fully as possible. You are telling them that they should be a good little brain injured person and not function to their full capacity. You are teaching them that because they enter the world as fully as possible and do what they can do, however weird it looks, you will always judge them as “faking it” “doing only what they want,” “using their brain injury as an excuse”. Would you say that to a blind person who can walk through a dark room with rearranged furniture without barking their shin? Or a paraplegic who skiis down a slope? Or a deaf man who writes symphonies? Be humble, and admit you do not understand brain injury. You’re in good company. No one understands brain injury. Get over yourself.
Sometimes the things people say that convery their prejudice are subtle. I’ve had people tell me (multiple people, occations, throughout the years) that they understand I feel I can’t do ___, while I feel I can ___. This is subtle, but just as ignorant and arrogant as “you’re faking it!” What I can and can’t do has nothing to do with how I feel, or what I decide, and everything to do with the price I pay for various activities in the world because of my brain injury. I can’t negotiate with my brain injury, or decide to push harder — any more than a person making minimum wage can decide to purchase a Ferrari and a mansion today. They may decide they want a Ferrari and mansion and work to be able to do that one day — and in effect that is what I and every other brain injured person who do things that don’t make sense (to us or to others) — because that is what we have to do to manage our brain budget and thus our brain healing (a brain can only heal if it is not in debt). You see us pushing boundries in ways that make no sense (and we know it but do it anyway) because we are investing in healing our brain. Support us rather than punish us. Or at least get out of the way.
How do you proceed, be you family, friend, minister, doctor, or someone else, when someone’s brain injury doesn’t make sense? Presume they are the experts in their brain injury. Believe them when they tell you how things effect them, even if they don’t make sense. Read the post on brain budget. Be humble, and be willing to not understand. No one else does. Anything less than this and you are likely harming someone who sacrifices in ways you can’t see to do the simple and the extraordinary that they do.
If you’re the person with brain injury encountering the arrogant and ignorant, realize that you can’t change minds and hearts set on not being changed. I am a slow learner, but I’ve learned to find a way around or through or otherwise not interact with people who are arrogant and ignorant. The image I have for this is water off a duck’s back. For me, the altarnative is slamming into their brick wall of ignorance, which triggers my adrenaline, and I and my family are the ones who pay a price for that — a price the person will never see. The problem with ignorance and arrogance is to them, every interaction prooves them right. Enlist an advocate who can help, if you have no choice but to work with the person. Pray. Forgive them. Move on, focusing on what you can create rather than the pain and harm they have caused.
I’ve been amazingly blessed that most family, friends, ministers, and some doctors have believed me, accepted what I tell them about my brain injury and how various situations effect it and why I can do what I can and can’t do what I can’t. Because of this amazing support I have been able to serve at Mass, minister to thousands with brain injury and their caregivers, write stories and novels with complex theology, and be an active father and husband — though all those activities look different than they would without brain injury. Thank you to all to support me. You are a blessing! May God startle you with joy!