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Based on this extremely broad and outdated (cue eye roll) definition, individuals with brain injuries have a disability, whether or not they want that label and whether or not their injury is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

I’m not broken (Findings, part V)

“For stigmatized people, the idea of normality takes on an exaggerated importance,” Davis (2013) explains (p. 148).

For this group of individuals with brain injuries, reconstructing identity around injury over disability serves as a problem-focused coping strategy that helps them eliminate the stress and uncertainty involved with brain injury and regain a semblance of normalcy in their lives.

Choosing between injury and disability points to survivors’ process of identity reconstruction.  Adhering to “injury” over “disabled” seems to help many people understand their limitations as “not [their] fault” and as “still in recovery.”

Carly completely agrees with the need for distinguishing between injury and disability, and for the first time during our interview, I see her become suddenly enthusiastic about an issue.

The excitement in her eyes juxtaposes the demure personality she has displayed throughout the first half of our meeting, and soon I learn the reason for her sparked interest, even anger.

The “disability” label is something she “fight[s] against all the time,” she tells me, eager to tell me more about the stereotype.

Carly describes:

“I had a brain injury; okay, technically I still have one, right.  Whatever … I’m still the same me…  I don’t want other people to see me as disabled, you know? I’m just slightly less capable than everyone else. Does that mean I have a disability?  Well, it shouldn’t.  There’s a difference between being disabled and being brain injured.”

Is there? What’s the difference?

When the participants of my study see their injuries as still in recovery, they see room for improvement and someday moving past their injury, whether or not that’s actually possible; they see opportunity for positive coping, even though it might involve ableist thinking.

Weiten and Lloyd (2008) describe problem-focused behaviors as actions pointed towards diminishing or eradicating stressors, which is what participants are doing when they eschew disability labels – they eliminate stress from the stigma that they perceive as associated with disability, and therefore feel they cope better with the stress of living with brain injury.

I’m not broken (Findings, part IV)

By identifying with having an injury instead of a disability, Melanie sees her limitations as something she can overcome. In her perspective, injury is less permanent than disability, and she feels more in control of her situation if she doesn’t consider her condition a disability.

It’s interesting that Melanie’s account, as well other participants’ stories, eschews the label of disability.

I’m a big believer in “to each his/her own,” but isn’t that kind of ableist thinking – precisely counter-supportive of people who have experienced medical hardships like our own?

It’s communicating a negative perspective of disability, at the very least.

My brain injury survivor participants view disability as a fixed and static identity marker that makes a person “broken,” when they have semi-permanent and permanent disabilities themselves.

Research, on the other hand, suggests a more dynamic understanding of disability than my participants do: that it’s flexible, performative, and (re)defined through our activities every day(Davis, 2013; Lindemann, & Cherney, 2008).

Dissociating from disability, then, is not only ableist, but also dis-empowering to those who do have a disability.

It’s interesting that six of the seven participants empower themselves by shunning the disability label, effectively looking down on others and what it means to have a disability.

What are your thoughts?

Melanie’s story echoes Sarah’s experiences dissociating between injury and disability. Sarah expresses:

“A lot of people don’t understand.  What I hear most is ‘Oh, you look fine.  You’re not suffering from an injury or disability.’

“I think people mean it as a compliment or to somehow tell me that – well, I look good…

“And really that is just the most frustrating thing because brain injuries are invisible, and people forget that it’s not something I’m ever going to get over. In my mind, it’s not a disability, but it is a permanent injury.”

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 II)

“I try not to identify with having a disability,” Richard tells me.  He looks at me for a response, raises his eyebrows.

I fight my instinct to give an academic answer encompassing the various levels of disability.

“Sure,” I concede.

Richard continues:

“I don’t want to see myself as broken, just different than I used to be.  Just because I have a walker doesn’t mean I have a disability… A disability gets you treated very differently, and I don’t want that.

“I want people to know I’m the same person I’ve always been… I’m injured, not disabled.”

My feeling is, brain injury changes us. For better, for worse, there’s no going back to living without it in our lives.

So if that’s true (and I’m pretty sure it is, because no such thing as time travel – yet), my question to you all is this: how does the “disability” label make you different than “injury,” like Richard suggests?

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?

My people: The brain injury society (my story this time)

Sitting in the doctor’s office with my parents and staring at a CT scan of my brain, the doctor doesn’t have good news for me.

My parents listen intently to his words, as I attempt to distract myself from the disappointing news I fear, I know, will come. My parents hold my hand and comfort me through what they know is difficult news. I redirect my eyes to the furnishings of the office, to the medical equipment, and back to the doctor. His rotund belly protrudes over his beltline as he points to the computer screen and points out the residual brain injury – evidence that the radiation surgery I had six years ago didn’t obliterate the entire clot, and I’m still at risk of another bleed.

It’s all the evidence I need.

I let the news hover above me before taking it in, bracing myself one last time. I think I’m ready to hear it though, and I begin listening again to what the doctor is saying.

I think to myself this diagnosis isn’t so bad; it’s what I knew to expect, right? Yet my moment of strength passes, and I find myself growing weak.

My hopes for a life without an AVM disappear, and my ability to stay strong for my parents is quickly crumbling. I desperately cling to my will not to cry, not wanting to disappoint my parents with tears.

My parents did prepare me for this news, and I promised myself that I’d be strong.  But as the doctor begins informing us about the options I now face, I grow weaker and weaker inside. I try one last time to hold back the tears and not disappoint my parents, but I can’t help it any longer.

I squeeze my parents’ hands more tightly, silently apologizing to them for what’s about to happen. Slowly, I break. The tears barely escape at first, then come uncontrollably.

I’m so upset by this diagnosis, so hurt by this doctor, so mad at myself for disappointing my parents by crying, and the culmination of all the pain only fuels my tears.

I plead with myself internally to stop crying, gripping tightly again to my parents’ hands. I notice this time that they squeeze my hand back.

Looking up for the first time since the tears started, I see my parents crying too, their sobs bigger than mine.

My people: The brain injury society (Findings, part II)

“So my boyfriend’s pretty much the only one who gets it.  Unless you’ve had a brain injury, people don’t get it.  They can’t help it, but they just don’t.”

I nod as I listen to Sarah‟s story, knowing exactly what she means. Besides my family, who has seen me through my entire brain injury, I have few people who truly understand my trials in surviving and recovering from brain injury.

Though it’s difficult for my fellow brain injury survivors and me to receive the proper social support from individuals without brain injuries or support groups that don’t fit our needs, we still recognize that there’s something different about connecting with others who have had similar medical experiences.

Finding people who can comprehend and relate to the magnitude of our experiences is rare, and we value our relationships with those folks when we do find them.  For as many destructive accounts of social support I found in meeting with survivors, there was an equal number – 16 of 16 – with descriptions of encouraging experiences. These experiences seemed to occur from social support offered by other brain injury survivors or by individuals very close to us.

See? I said it would get better.

My people: The brain injury society (Findings, part II)

“You’ve just got to have those people in your life,” Douglas explains, again in his simple-as-that manner.

He tells me:

I know the hell people go through.  I’ve been there; I’ve even been suicidal.

“But at some point, you look at yourself and say, ‘Do I want to just give up, or do I want to survive?’ And that’s what having others who’ve been through the same thing is for… to understand all that good and all that bad… ‘Cause there’s a whole lotta bad.”

All the survivors I meet express a desire for a support group, but they say SBIF isn’t a group to which they can relate.

I think of Melanie’s story, noting again that survivors indicate age as an important factor in relating to others – as well as something largely missing from SBIF.

What helps you relate to others? Or what makes you want to share?

Groups tend to attract more members when the group has greater similarity and thus, a higher cohesiveness, meaning members are more likely to participate in group activities, benefit from the support, and stick around to support newcomers if they feel cohesive with one another (Stangor, 2013).

When group members share similar traits such as age, they find it easier to relate to one another and are more inclined to continue membership with the group.  Research also indicates that similar backgrounds (e.g., brain injuries) increase interpersonal attraction to a group and group cohesiveness (Stangor, 2013; Stillman, Gilovich, & Fujita, 2014), but this is not the case for my SBIF’s survivors and me.