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Tuesday, November 5, 2013

Some People Just accept it. I Don't

Another paralyzed bride story has been published. This time the Denver Post has printed a story replete with an eight minute video and a number of photographs about a very attractive young woman who wants to walk down the aisle at her sisters wedding. Hard to imagine the Denver Post story is much worse than the previous paralyzed bride story I wrote about. How bad is the story? Let me quote the first sentence: For someone who was told she would never walk again, Mackenzie Gorden spends a lot of time thinking about shoes". The below photograph highlights this point.

The story in the Denver Post glorifies walking. Using a wheelchair is deeply stigmatized. Do not trust me--read for yourself; here is the link: Lines such as the following are inherently demeaning.

"Patients are standing up and taking steps after years of sedentary life. Quadriplegics lean only on walkers to shuffle hundreds of feet".

"Golden retains the rail-thin figure of the dancer and cheerleader she was. But a girl can have many goals".

"Golden was 18 and looking forward to senior year. She had danced and cheered all over the state and was to captain her team on a summer trip to cheer in Hawaii. She was a nursing assistant and wanted to pursue a nursing degree. Shattered C5 and C6 vertebrae now clamped down on those dreams".

Goodness where do I start? "A girl can have many goals". This sentence could have been included in  a 1955 etiquette book for girls. You know a girl is supposed to support her husband, have children, and be a good homemaker. Paralyzed people are sedentary, quadriplegics shuffle their feet, Gorden retains here rail thin figure and a spinal cord injury clamps down on her dreams. This is not just bad. This is epically bad. The hook, of course, is tragedy. The heroine is the beautiful but crippled woman who refuses to accept the fact she will never walk again. Left unsaid is the fact she is a superior human being when compared to other paralyzed people that are lazy failures. The exploitation involved is extreme. The story is gender biased in the extreme. Does the fact Gorden can brush her own hair and put on make up seem worthy of noting? I think not.  Sex sells I suppose as the story also has a photograph of Gorden in a pool wearing what else but a bikini.

The framing of this story is dreadful. Worse yet, is that Gorden is at Craig Hospital in Denver. This is one of the leading institutions in rehabilitation for people with a spinal cord injury. I wonder about the reaction of health care professionals who work at Craig. Are they delighted by the story? Are they appalled like I am? To me, this story is a missed opportunity. There a few nuggets of great interest that reveal how far the treatment of spinal cord injury has advanced. Gorden obviously has an incomplete injury. In the olden days when I was paralyzed the American Spinal Injury Association had not as yet established the ASIA scale. Two sorts of injury existed circa 1978. Complete and incomplete. Those that fit into the incomplete category were exceedingly rare. Today,  spinal cord injury is broken into five categories and there really is a range of function thanks to advances in immediate post injury care.  None of this fits into the Denver Post story. The focus is on walking and walking alone. Reality however is different.  Apparently Craig Hospital has embraced locomotor based therapy.  The goal is not walking but rather mundane and serious issues associated with spinal cord injury: circulation in the limbs, bone density, pressure sores, muscle atrophy, obesity, and bowel and bladder function. None of this is sexy. This sort of discussion will not sell newspapers. Into this void we get yet another story of a paralyzed woman that wants to walk.

Most disturbing to me to me is Gorden's seeming dismissal of good advice from her paralyzed peers. They told to her move on with life, to focus on ordinary things like going to college. This advice is dismissed. Gordon is quoted as stating it is easy for them to say because they don't have a chance to walk again. This individualizes her disability and isolates Gordon from others. She also confesses to being annoyed with this attitude. I suspect she also feels in some way morally superior to her paralyzed brethren. Perhaps in time Gorden will have a more nuanced view of disability and spinal cord injury. Perhaps she will discover the real issue for a person that is suddenly paralyzed is far less physical than it is social. Despite great progress the physical environment is not designed with wheelchair users in mind. It is my hope Gorden will realize that life is sweet regardless of whether one uses a wheelchair or is bipedal. It is my hope she will learn that images of her mother lifting her and putting her in the passenger seat leave much to be desired.

I see this image and cringe. Craig Hospital has an exoskeleton and other high end medical devices of dubious medical benefit and Gorden is lifted in and out the car by her mother. This makes absolutely no sense. Why does she not independently drive a car or mini van equipped with a lift and hand controls? If I were a college aged person being lifted in and out the car by my mother would be the last thing in the world I would want to happen. Screw walking, I want to be independent. I am happy to give Gorden much slack. She has been injured less than two years. My problem is symbolic.  What message is being sent when it appears the entire point of rehabilitation is an effort to walk? What message is sent when time is spent walking in an exoskeleton and Gorden's mother wishes she had such a device at home? Again, this makes no sense to me. I would think with an incomplete injury the effort to retain or regain as much movement as possible is a critical goal.  But it appears to me the only goal is walking. I for one would like to know more about Gorden's plan for attending college. She wants to be a nurse and when she met a paralyzed physician she thought if he can get through medical school I can get through nursing school. Rather than focus on such typical goals.  I would like to also know how exactly she ended up at Craig Hospital? Was she selected because her injury was incomplete? If so, how does her care differ from a person with a complete injury? Are people with no chance to walk again deemed unworthy of rehabilitation? Are such people perceived to be failures? To me these sort of questions emphasize how little the readers of the Denver Post will get out of the story about Gorden. A waste of newspaper space if you ask me. A destructive waste of space as well.


Lynn said...

The article is a horror show. The video is worse.

I will say, though, that I didn't see anything about this young woman's own attitude that offended me. It was her mother who made the comment about "easy for them to say." When I listen to this girl, I see a teenager - the same age as my own daughter - who is in a truly unenviable position. Of course the injury itself isn't what she would have chosen, but what's really striking is how everybody around her - EVERYBODY - has an agenda. The rehab folks are caught up in wanting to "make her walk." (I cannot tell you how many times I've heard young PT's say that. It's customary to adopt a tongue-in-cheek tone when using those words, but there's still a reason it gets said.) Her family is saying stuff to her like, "You can be my Maid of Honor IF you can walk down the aisle" - a "joke" with the crushing weight of real expectations behind it. Mackenzie herself speaks of how important her walking is to her family, and then tries to follow with a disclaimer about how of course she wants it too... but it's very VERY clear that trying to please everybody around her is the overriding theme of her rehab-immersed life. They are turning her into a "professional patient" at a time when, as you rightly say, she should be going to college and laying claim to a life of her own.

(And, the "gait training" shown in the video is really disturbing to me as a PT. Her trunk control is very poor. I see a young woman at high risk of injuring her low back, which is unprotected by any observable muscular stabilization. She could end up in a lot of unnecessary pain, and much LESS functional than she could have been, if she is pushed irresponsibly through activities her body isn't ready for.)

Does that mean I think she should abandon therapy and "settle" for the level of function she has now? Not at all. In the context of being supported unconditionally going on with all areas of her life, the option of doing as much therapy as she wants to do should be available to her. (As should the option of NOT doing therapy, or the option of focusing on sports rather than formal therapy, or whatever works FOR HER!) But the support I see around this girl is overwhelmingly conditional, and she is responding to that situation the way most teenagers would, by taking on what everybody around her says she is supposed to. And this kind of press only adds a cheering mob of spectators to the insistent chorus of voices telling a young kid what her life is supposed to be about, instead of giving her a chance to find out for herself. It really is painful to watch.

william Peace said...

Lyn, One and all do appear to have an agenda. I also agree she exhibits typical teen behavior. To me the story graphically illustrates how deeply the cure industry has infiltrated rehab culture. Talcott Parson wrote about the sick role long ago that has now evolved into professional patients who are akin to a cash cows for companies that market dated DOD inventions like the exoskeleton. You know what changes people lives post SCI--gaining control of bladder and bowel function. Learning about how important it is to have a top notch and properly fitted wheelchair. Add in skin awareness, remaining active physically, use a wheelchair cushion, etc. None of this is sexy. None of this is profitable. Rehab today is shameful. Newly paralyzed people are set up to fail. What happens if this girl does walk? Who will pick up the pieces of her perceived failure? What will she think? Will she become clinically depressed and end her life? This happens far too often. I am just disgusted.

Glee said...

hear hear Bill!!!

Unknown said...

Mackenzie has continued to increase in function ability. She does a stand and pivot transfer out of vehicles. She walks with a walker, but can not get into position with the walker independently. She was advised not to go for driving training until next spring, since modifications needed now may not be needed later. They are expensive, why pay for what's not needed? She works on upper body strength on her own. She works on transfer skills onto a mat, back into her chair. THIS article is about the new advances in spinal cord rehab over the past 10 or so years. She can walk in the pool, she would have preferred that picture.
She didn't even try to stand until a year ago at Christmas when her family wonder...what if?? and wham...she could!! So it shouldn't be pursued? Her legs work much differently with weight in them, then they did during ASIA testing. Maybe if her family hadn't tested her legs, maybe nobody would have. If there are therapies out there that may help her walk again, even if a few steps to be more independent, she should not try them?
She is going to college. The plan will be for her to have her own vehicle by next fall. Should she have got one last year when she had no function in her hands and legs, or is it better to see how much her body can regain?
She was in a harness while doing the NRN training. Her trunk was secure. She also did FES, other articles in the series went into other aspects of therapy. She is very accepting of her injury, her disability. She has repeatedly stated, she would rather have full use of one hand than walk again. You don't know the whole story, you know about what the purpose of the article is about. So progress shouldn't continue with SCI therapies? Do you believe also if someone has cancer they should just accept it? Or are you OK if they continue to look for cures? I agree the comment "easy for them to say" is offensive...also taken out of context. Kenzie had 9 weeks at Craig over the summer....then she returns home to where local PT is 20 years behind in technology. Had she not gone to Craig, she would have never know what she is capable of.
She has her own mind. She does what she wants. She hasn't moved to Colorado to continue this therapy. Her life doesn't revolve around the hours of intense therapy she had while she was there. Her theory...."If I'm going to spend the summer in Colorado away from my friends, they better fill up my day at Craig."
Ending her life???? She wants to be able to get out of her bed, into her chair. She wants to be able to transfer herself to a toilet. She has a new addition on her home with a ramp and a roll in shower...does that sound like her family is not accepting her as she is? What bothers her more than anything is when people think they know her, about her ...when they don't. When they think everyone in a chair has the same thing in common as everyone else. She is one of a kind. She loved the therapist at Craig. She stays in contact with many of them.
If you think she shouldn't strive for a better life, then I want to ask you....did you go to college? Are you making minimum wage? Do you plan to live with your parents forever? Or do you have hopes and dreams? Goals and desires? And do you move in directions that help you gain on those things? Or do you sit back and say, my life sucks and there's nothing I can do about it?
Must be awesome to sit and judge people because you think you know everything about them.

Unknown said...

Oh...and to Mr. Peace, Mackenzie's friend, a complete SCI, highly recommended Craig to her after he had been there two years earlier; she wasn't "Selected". She is an incomplete. She wants to pursue an Oncology Nursing degree.
This article in one in a series of 4. The whole point of it is to educate people with incomplete SCI that there may be something out there to help them. Craig also has many complete SCI along with brain injuries.
Once again, if you don't know what it's all about....don't criticize....get the whole picture and don't be so negative.

Unknown said...

Craig has a specialized staff of experts that just fit wheelchairs and cushions. The have several makes and models for patients to try out. They have multiple seat cushions. They have educational videos, courses, etc, on AD, skin care, bladder; they even teach about airport/flying needs. They take patients out in the community and show them how to get around, how to open a cooler in a convenience store, and get something out. They have a gym that is full of inpatients and outpatients. They have a driving clinic and have companies come and show their vehicle modifications - but for Mackenzie, it's too long of a process to complete out of state. They have a teaching staff that helps high school students keep current on homework. They have electronic gadgets to help make life a little easier. Craig's total purpose is to focus on the "Can dos"...not the "can't dos".
Kenzie was told in Rochester she had to ride in a power chair in a car for at least a year. She did not want a van with ramps - she is a teenager after all, and riding in her chair anywhere, caused her motion sickness. She decided she didn't want that....SHE DECIDED. When she got to Craig, she was fitted for a power chair and a manual. She also had a shoulder injury so pushing a chair was painful for her. After her return home to Iowa, she was back cheering on the sidelines in a manual chair. By Thanksgiving, she completely abandoned her power chair. While she wants to donate it and be completely done with her, her mom wants her to keep it in case she needs it in her place of employment eventually - because they do know that Mackenzie could be in a chair her whole life. They have rec therapy, psychologists, outings.
As for the bikini in the's what she wore, she's a teenager. Nothing special for a day when cameras were there. It's much easier to change out of a two piece than a one piece, but then again William, you are gender bias and didn't put yourself in her place.
You really should go visit Craig. They may just make the quality of your life a little better.
K....I'm done now.

william Peace said...

KC Retalus, It is unfortunate that I just noticed your three replies today 1/10/14. I read all four articles in the Denver Post. My post was written in response to what was written in these articles. I have not met the young person in question and know nothing about her beyond what was published in the newspapers story. Pretty much everything you wrote is news to me and all others who do not know the young woman. Your detailed reply provides a much better context and explains some of the disconnect (for instance why she is not driving with hand controls).
I understand the Denver Post articles were about advances in SCI rehab and what it is like to live with a partial injury. You get that as do I. But the average person reading this article in passing will lump all people with a SCI together as a single entity. The point I was trying to get at is that the net result of the article is the glorification of walking over all other means of motion. Walking is good wheelchair use is bad. By extension it is easy to think some will consider the young some in question as a hard worker and those that use a wheelchair to be lazy failures. We both know the public knowledge of disability is largely one of gross ignorance.

william Peace said...

KC Retalus, Part two: People love to read about new advances in SCI research. This is great. Research into all aspect of SCI life are worthy and important. I never would oppose such research. It could benefit many lives. I do object to the way such research is framed. A charity and medical model is routinely used to mislead the general public and raise money. For instance, the exoskeleton is exhausted as a means of helping the paralyzed walk again. I have read the grant proposals that have been successful. Physicians tie the best use of the exoskeleton to complications associated with paralysis--bowel and bladder function, increased circulation and improved skin integrity. Missing from the proposal is the ability to walk again. I find this misleading.
Finally, for your edification I was paralyzed 36 years ago this month. I would suggest I have learned a few thing along the way about the social significance of paralysis and disability in general. I would character myself as a hard ass pre ADA cripple that has to fight for my civil rights. Civil rights I am glad the young woman in question does not have to fight for. That is why I have been what anthropologists call an engaged scholar. This is in part why I have a BA, MA, MPhil and PHD from Columbia University (oh and I graduated with distinction). Sorry but I do not just sit around as a miserable soul critiquing others. I also am a distinguished professor at Syracuse University and my son is about to graduate from college.

william Peace said...

KC Retalus, Brief part three: i suggest you read my previous posts about the SCI cure industry. Rehab today is dominated by the SCI cure industry and the culture of rehab has significantly shifted and your replies indicate how removed newly paralyzed people are from disability rights, disability studies, and disability culture. In my opinion this is to the detriment of newly paralyzed people. The sad fact is almost 25 years after the ADA was passed into law the vast majority of people with a disability live at or below the poverty line. Most, 66% are unemployed. Access to housing and mass transportation is problematic at best. These are needless social problems that adversely affect the ability of people with a disability to be functional members of society. This is something I rail against. It is something you should rail against too.
Finally thank you for taking the time to write such a long comment.