I’m not broken (Findings, part VI)

“I’ve done a lot of work to recover from my brain injury. But that’s not what other people see when they call me disabled.  It feels like it’s my fault, like I still have more work to do. . . .  When the truth is I’ve come a far way from my brain injury and certainly a far way from disability,” Carly tells me.

Her account reiterates the distinction brain injury survivors make between injury and disability, and the need for some to relate to injury. Because society often equates disability with “brokenness,” including some brain injury survivors themselves,  some individuals choose injury over disability to communicate that they are not their brain injuries; they’re not something broken that needs fixing.

Further, Melanie’s account testifies to what the underlying difference may be between injury and disability, according to brain injury survivors.  Based on her experiences, Melanie still sees the potential to recover from her injury, even if the potential is faint.

Melanie says:

I want to get back to my pre-accident ability.  I want to work and hold a full-time job that’s mentally stimulating and go back to school. I want to play sports again and work out… I feel like I’m always resting and putting minimal stress on my brain.

“It helps me to know that I can fully recover from this thing [brain injury] if I think of it as not permanent.”

While Melanie acknowledges her current limitations from the brain injury, she also sees them as temporary, as an injury to overcome.  Because part of her injury is cognitive and the brain is able to adapt, she has hope that her brain can recover still and she’ll regain cognitive abilities. By identifying with injury over disability, she associates herself as on the path to recovery, which is transitory, liminal, and not enduring.

I get what Melanie means with the need for hope, but in contrast, does disability have to mean hopelessness?

Just sayin’, maybe we as a society should reshape our understanding of both brain injury and disability so that people – across the entire spectrum of ability – don’t feel perceived as “broken.”

The literature behind identification with disability is intricate, interweaving, and yet contrasting.  The definition of disability created by the World Health Organization (WHO, 1980) includes any restriction or function loss in a person as a result of impairment, inhibiting the performance of an action.

Based on this extremely broad and outdated (cue eye roll) definition, individuals with brain injuries have a disability, whether or not they want that label and whether or not their injury is permanent.

It’s interesting then that the participants of my study largely dissociate from the disability label. Lack of identification with the label could be a coping mechanism, such as a problem-focused strategy; individuals take actions (in this case, strategic language choice) to eliminate the stress they perceive is associated with the stigma of disability in society.

Research by Olney et al., (2004) supports this claim, finding that individuals who identified with having a disability may lead to lower satisfaction and increased mental problems associated with disability.

What do you think? What have your experiences been, one way or another?

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I’m not broken (Findings, part III)

Separating injury and disability appears to be a significant distinction that brain injury survivors make, and it connects them us further to the liminal space of identity.

Actively choosing to identify with injury allows my fellow survivors and me to dissociate from the passive label of “disability” (which we or others have given us) to which we technically belong and therefore take ownership of our identity (Frank, 2013).

The (re)construction of labels empowers individuals with brain injury to be active co-constructors in the recovery from brain injury, versus passive, mislabeled, or misunderstood “victims.”

Choosing labels allows us to construct whatever identity we desire.

But just sayin’, is there a dark side to that?

Melanie has a similar outlook on the role of brain injury and disability in her life.

I’m definitely not disabled. I have an injury, sure. It prevents me from doing the things I normally would… but I don’t have a disability,” Melanie says, defensively.

“I see myself as more resilient, as being able to get up even when I am knocked down by all these reminders of what I can’t do and the limitations my brain injury has put on my life.”

I’m not broken (Findings, part I)

“I‟m not buying in to the potential of full recovery.  This is who I am now,” Peggy tells me, firmly.

“Doctors like to tell me this and that, and I just roll my eyes because I don’t believe them.”

Peggy’s recovery has been littered with different diagnoses, but she no longer clings to them for understanding her brain injury physically or emotionally.

Although doctors label her permanent physical weakness a disability, she doesn’t label herself that way.

In 14 of the 16 meetings I had, brain injury survivors mentioned categorizing themselves as something other than “disabled,” even though the cognitive and/or physical effects of their brain injuries technically place them into a “disability” category.

Instead they use variations of the term “injury” to describe their cognitive and physical deficits.

I’m all for people choosing their own construction of identity and choosing our own labels, but what do brain injury survivors achieve by shunning the term “disability”?

Is it possible we’re creating another form of discrimination – brain injury survivors vs. “disability”? Don’t you think, if anything, we should be each other’s support, each other’s people?

Just food for thought, I suppose. How do you label your brain injury and residual side-effects?

Where’s the social support? (Findings, part VII)

Sarah relates to Peggy’s situation.  She appreciates the support that others offer her, but “it‟s not the kind I need,” she tells me.

Sarah describes, “People say to me, ‘Oh, you‟re so lucky to be alive. You must be so grateful.’ I am grateful – don’t get me wrong – but I‟m still not the person I used to be.

“People don’t really give me the right support because they don’t know what I’ve been through.  They hear how I survived the car accident and tell me how lucky I am. Well what about the rest of it?  What about the living with the repercussions, the day-to-day shit fest, how I’m not who I was before?”

Sarah‟s account demonstrates brain injury survivors’ need for a social support that’s unique to the individual. There are so many different types of brain injuries, with varying levels of recovery both physically and emotionally for each one.

Survivors need social support suited to their individual situations. We need social support suited to our individual situations.

It’s not black or white: I’m stuck in the gray (Findings, part IV)

In the years immediately following my brain injury, I struggled to reconcile my identity as a young, popular, and able ice skater with my new role as a helpless, rejected, and lost 11-year-old. It was in this liminal space that I wandered for a long time, and Richard now finds himself there too.

The space isn’t clear or straightforward; it’s neither black nor white; it’s not made up of the people we used to be, nor is it made up of society’s perceptions of what brain injury survivors should look like. Rather, the space is an identity all its own. It is gray, changing, and undefined.

As my interview with Richard continues, our conversation strays from the questions I had prepared in advance to ask him. We speak less formally and more like old friends swapping battle stories of coming to terms with what we’ve experienced. He shares intimate details with his struggle to “find himself once more” at his advancing age, and I’m amazed at his strength to rehabilitate not only his body, but also his identity at this point in life. The journey to reconciliation seems to be ongoing.

Richard describes rectifying the “old” and “new” versions of himself as “an uphill battle [he‟s] still climbing.”
I relate to this unsettled feeling of being stuck between two worlds, but I cannot help but wonder if the ordeal is even more challenging at his age, when he is no longer his young self, yet still unsure of what identity he is to assume in the future. I reflect again on the past-present dissection in his language: his “old” and “new” selves, the “battle” he hopes to win.

Why do we always use “war” language anyway? Are we battling ourselves or someone else?