When I applied to the ABI (Acquired Brain Injury) Network for health services, I was immediately referred to day programs. Say what? When I was sent to CHIRS (Community Head Injury Resource Services) because the Ontario government had drastically cut community (health) care for people with brain injury, I was faced with variations on day programs. And for 2019, the Board of the Brain Injury Society of Toronto (BIST) has decided to go the paternalism route, too, by renaming monthly "Community Meetings" to "Social Learning."
Why does it matter? A name connotes attitude.
Why is it when I seek health care and advocacy that I’m instead offered the Valium equivalent for brain injury? Why when I pay membership fees or taxes towards advocacy or health care, I instead receive schooling as if I’m an errant child? Why am I offered social programs designed to keep people with brain injury occupied instead of programs that would allow me to rejoin society? This is bad for the soul.
Paternalism helps nobody.
The brain controls everything, ergo anything and everything can be mildly damaged or totally destroyed when the brain is injured. This goes for social skills as much as for cognition or physical function.
"Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand."
The problem with socialization isn’t with my broken brain; the problem is with health care’s attitude. Brain injury isn’t a behavioral issue; it’s a neurophysiological issue requiring neuroplastic treatments and practical, physical, cognitive, emotional, and social supports. Only treatment to regenerate broken neurons can rekindle social skills. And only those willing to learn how to socialize with people with a brain injury can ensure the injured person’s social life isn’t completely lost. Unfortunately, outside of what not to say to a person with brain injury, most writings or rehabilitation focus on the injured person to change their behavior.
One of the groups I joined at CHIRS was called, "Be Social." The group was small; two health care workers lead it, one was a therapist. The group gave me a chance to socialize with other people with a brain injury, but as a teaching tool, it failed. It failed because those of us there either knew perfectly well how to socialize, it was just that our broken brains wouldn’t let us, or the capacity had never been there and never would be without extensive years-long in-person-teaching during real-life scenarios.
I told the overworked person in charge of social life at CHIRS that the programs he devised were great, except that they existed because society wanted nothing to do with people with brain injury. Day programs served to keep untreated suffering people occupied and prevented them from rejoining society. He hadn’t thought of it that way before and wanted me to speak on it. From the lack of invitation, I gathered the rest did not.
So long as people with healthy brains don’t have to learn how to socialize with people with injured brains, day programs will exist.
CHIRS exists to support people in their recovery; it isn’t an advocacy organization per se, as I understand it. But BIST is. So why is it supporting the health care lie that brain injury is a behavioral issue? Why is it promulgating the myth through the moniker "Social Learning" that if we could just learn how to socialize, we could live great lives? Real advocacy would espouse "Social Learning for Society." There are many kinds of brain issues that make socializing difficult. But the common denominator of them all is that people with healthy brains won’t accommodate differences. And entities from schools to health care organizations don’t seem to be teaching them how. I suspect that many Canadians, and I’m sure others in the rest of the world, would want to do better. But who is making them aware that this is an issue that anyone with an accommodating, generous, and kind attitude can learn to resolve?
Headway UK seems to be a rare organization that does. It wrote a fact sheet guide for friends of people with brain injury. They write: "…learning about brain injury is the first step towards helping someone affected by this ‘hidden’ disability."
Absolutely. But there are two problems with this first step of learning to socialize with people with brain injury. The people in the injured person’s life need to want to learn. How does one convince them when they’re busy denying, avoiding, and blaming? And I find awareness campaigns here in Toronto focus on sports concussions, how to avoid brain injury, and that it pretty much sucks. The Ontario Brain Injury Association and BIST created a mask campaign in 2018 for brain injury awareness month that visually showed how members felt, but they didn’t launch off of those masks’ visual messages to get into the nitty-gritty hell of a brain injury. Advocacy would entail talking about how brain injury radically alters daily life and destroys social relationships and how ordinary people can halt that destruction.
Headway UK, like many organizations do on their websites, describes in brief the visible kind of brain injury and then listed the long-term effects of any kind of brain injury, dividing the list into physical, cognitive, and emotional and behavioral impacts. This is useful. But how does that help a person with a healthy brain socialize with a person with a broken one? They compassionately write:
"…you may deeply miss the person they were. However, rather than walking away from them, try to realise that you are grieving together and that it is possible to move forward supporting one another and creating new memories."
Like with others who suffer a life-altering brain injury, my network walked away. They couldn’t see the hope. They couldn’t see that journeying with me as I sought treatment and healed my brain could be rewarding. That’s why "Social Learning" should be about that very idea—that you as a person with a healthy brain can find it uplifting to come alongside your injured friend and actively help them. Jeffrey S. Kreutzer, Ph.D., spoke on the related idea of recovering relationships at the Pacific Coast Brain Injury Conference 2010. Part One of his talk is up on YouTube. He astutely quotes an injured person: "I lost my friends because they didn’t know how to deal with my injury. Neither did I."
Headway UK continued on their fact sheet:
"Don’t assume that just because your friend appears to be coping or does not take the initiative to contact you, they do not need help. Rather, ask after them and offer to help out where needed… If appropriate, attend rehabilitation sessions with your friend, and ask the rehabilitation team if there are any activities such as cognitive exercises that you can help your friend with in their own time." (Emphasis mine.)
They go on to list specific practical support at home and when out and about. As I tweeted, even the simplest help is life-giving:
"A simple lightbulb change is not that easy when you’ve had injuries (permanent or acute) and is one of the nicest things you can do for someone who can’t."
So how would a Social Learning monthly meeting look like when thinking about advocacy instead of 19th-century-style schooling? I’d aim it at the general public and people with brain injury so that they could interact with each other and learn from each other. I’d have monthly meetings focus on one aspect of how a person with a healthy brain can accommodate one with an injured brain. For example, the January 2019 vision board exercise could begin with an intro about how one’s purpose and dreams die after injury and how society can help them not die or help create new ones. Have duos create vision boards together, the duo comprising a person with brain injury working with a friend or family member or general public looking to learn.
To attract people from the general public, I’d look to partner with schools or universities and colleges since students are usually the most interested in learning and are already learning about their special needs classmates. This would also grow a cohort of compassionate adults. I wouldn’t focus solely on the health care departments but on all departments, perhaps using the lens of each department as their entry to learning how to socialize with an injured person. I’d also partner with City Councillors to ask them to include announcements in their newsletters, especially during brain injury awareness month. And ask the media to include the monthly meetings in their community listings.
It’s not easy to overcome the status quo but is worth pursuing because the traditional rehabilitation construct of schooling us like errant children while society pretends it’s not that big an issue doesn’t serve people with brain injury. It keeps society insulated from the horrors this injury brings and thus vulnerable to experiencing one. It perpetuates the destructive force of the injury. It only pleases those with good yet paternalistic intentions as they persuade us to parrot the "right things" and learn to keep our pain silent. Those who cannot endure it any longer commit suicide.