Monday, June 15, 2015

The trouble with rehab 'miracles?' They ignore luck

BLOOM is always looking for parents and professionals to write for us or be interviewed. This piece by occupational therapist Veronika Lukacs came to us because Tom Nantais, a former Holland Bloorview researcher, told me she'd have great insights to share. Thanks Tom and Happy Birthday! Veronika (above) with Russell Winkelaar helped build 62 StopGap ramps to improve access to stores in London, Ont. this weekend. Woo hoo! Louise

By Veronika Lukacs

Every so often I read a local news story about someone's experience in rehab following a devastating physical injury. Nine times out of 10, the story makes me angry.

I'm a newly graduated occupational therapist in a happy relationship with a handsome man named Russell Winkelaar, who sustained a T6 spinal-cord injury at the age of four from a head-on collision with a drunk driver. Russell is paralyzed from the armpits down and uses a manual wheelchair to get around.

Prior to studying OT and meeting Russell, I spent two years looking at the effects of mass media through a master of arts degree at Western University. People are surprised to learn about my media background, but I think it complements occupational therapy practice well.

A person's cultural environment can be a barrier to meeting rehab goals, and it can also shape what kinds of goals a client wishes to pursue. What we see in the mediabe it a news article or fictional TV programgives us clues about the meaning our culture ascribes to life with disability. It also tells us what rehab outcomes the mainstream considers successful. Many of the stories I read are similar and have become cliché.

One popular one goes like this: Young, athletic man in his early 20s breaks his back pursuing an extreme sport. He sustains a spinal cord injury, and doctors tell him his chances of walking again are non-existent to slim. The young man goes through gruelling and intense rehab sessions. Through hard work, personal strength, and perseverance, the young man defies all odds, proves the medical team wrong, and walks again.

I call this the "miracle story." The miracle story often features a person with spinal cord injury, but there are variations that focus on people with congenital disabilities or other acquired disabilities.

The miracle story bothers me because "success" or "overcoming disability" is always attributed to personal strength and willpower. That's great for the person who walks again, but what does it say about the person who doesn't? The miracle story burdens people by making them feel like it's their fault if they don't recover. It suggests that people control their rehab outcome through positive thinking.

The miracle story is misleading. It's usually vague about the type of injury the person sustained. Often times, the individual had better chances of walking again, but the story conveniently left this out.  

Yes, rehab can improve one's chances of re-gaining mobility, but there's also a great deal of luck involved, depending on the type of injury or disability. People don't like acknowledging the luck factor in rehab outcomes. And the reality is that no two people's situations are the same

Unfortunately, I've seen people in rehab programs read these stories, compare their progress and feel they didn't measure up.

In addition to demoralizing patients who won't walk again, the miracle story influences how loved ones support the person. Family members ask me about these stories and share them in hopes of raising the client's spirits and motivation. When this happens, the person who doesn't make a full recovery not only feels their own disappointment, but that they've somehow let their family down.

The miracle story serves as a reminder that our culture sees wheelchair use as undesirable. Walking is the ultimate goal, even though for many people it isn't attainable.

"Everyone wants what's best for their child, but we're stuck in the mentality that getting back to the way you were before is best, as opposed to learning how to adjust," my partner Russell says. "Instead of waiting for the child to walk again, and being depressed for a few years or in denial, parents need to build their child a ramp."

I'd like to see more varied news coverage of the rehab process to balance out the negative effects of the miracle story. Why is this story held up as the ultimate success? What about the person who never walks again, but explores new passions and contributes to their community?

While "being positive" has its place in rehab, a distant hope of returning to an old life may not be beneficial. Full recovery and walking need not be the only goals, and people in rehab need constant reminders that people with disabilities can lead happy, fulfilling lives.

As an occupational therapist, it's difficult to advocate for changes to how the media covers rehab. It's also challenging to balance inspiring hope in clients while remaining realistic about the likely outcomes. In fact, it's often impossible to know for sure what rehab outcomes are realistic!

What we can do is address the problems with these stories with clients and families. We can explain why the experience of one person in a news article is just that—the experience of one person.

Russell says that changing society's views from the ground up is essential. "If close family members won't accept that their loved one won't walk, how is society supposed to?"

People need strategies to help shift their perspective on what it means to live with a disability. That's why peer support from those who have gone through it, and counselling programs that address psychosocial need, are invaluable.

I'd like to see future programs directed specifically at assisting family and friends in how to best support their loved one.  "Disability is always going to exist," Russell says.  "It can happen to anyone and no one wants to talk about it. That's why it's so terrifying. If people could see that having a disability isn't the end of life, they'd be a lot less afraid of it."

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This bothers me greatly about cancer patients--somehow only those with a "positive attitude" are credited with recovery. That is so very hurtful to the family of those who do not recover.

I so agree. Also agree that it applies for those with any ailment, issue, disease, disability. Applies to those who feel it's because of God's blessing that a child or anyone, for that matter, survives or does well. A lot of luck is often in the picture.

I have been a wheelchair user since a spinal cord injury 12 years ago and this article describes my experience perfectly. The author is dead right in taking on the ignorance and prejudice that infect many of the (relatively rare) depictions of disability in the media.

I agree with Veronika and the commentators before me; it also applies to illnesses, and other conditions, and personal obstacles. It is good to address this, it will help educate and open people's eyes.

Hi Veronika,

Although one's life shouldn't be spent in rehab, or pursuing outcomes that will never be, another misleading aspect of the so-called "miracle story" in the need for some form of continued care throughout one's lifespan.

I thank you for your current work with the StopGap Initiative, your previous efforts for AccessTO, and this your most recent post.

Wishing you and Russell every happiness,

Matt Kamaratakis

Hi Veronika,

I know exactly what you mean about the other miracle story. I saw this with my own eyes, while staying in rehab because of my cerebral hemorrhage. A lot of my rehab "buddies", who stayed in rehab almost permanently, because of their spinal injuries, giving me the "thumbs up" sign when I did my daily therapy sessions. It struck me to see their happy faces and see them living abundantly and positive and this gave me such a positive boost. No one is alike, every story is different and mine was a very lucky one, thanks to my rehab buddies.

A big hug to you and my dear cousin Russell,

Erik Winkelaar