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Thursday, April 14, 2011

Life Support: Not What You Think

Last year I read about Dan Crews. It was a sad story I chose not to write about. Crews experienced a spinal cord injury when he was three years old and is a ventilator dependent quadriplegic. Briefly put, he wanted to die. He wanted someone to turn off his respirator and he went public with this request. The story made the news and I recall not being surprised that many supported his desire to die. Suicidal thoughts for high level quadriplegics shortly after injury are not uncommon. I tend to think it is a sane and rational response to a devastating injury and radically life altering event. However, the vast majority of people with such an injury move on with life. These are people you never read about in newspapers. I thought that Crews wish to end his life was nothing more than a public cry for help. I did not want to step into the fray though I was disappointed by the media coverage. It was maudlin in the extreme. It was also overwhelming supportive. For example, in 2010 the Milwaukee Wisconsin Journal Sentinel noted:

Every day, Crews lies in bed for hours, staring at posters of cheerleaders, watching sports he will never play. When he wants to make a call or use the computer, he asks his nurses to bring him the telephone, which he pecks at with a stick he holds in his mouth. When he's thirsty, he calls for a nurse, or for his mom, Cheryl Crews, who lives with him. They bring a drink and hold the straw up to his mouth for him as he sips.
"I have no friends. I have no education. No education prospects. No job prospects. I have no love prospects," he said. "All I want is to no longer live like this."
He is physically incapable of ending his life.

The message here is not subtle. Kill the poor man already! Slow down. Forget the melodrama and please ask the pertinent question. Why exactly does Crews want to die? It has nothing to do with paralysis but rather with his quality of life. Thus the question that should be posed is why is the quality of his life so poor. Why does he have no friends? Why does he live with his mother? Why does he lack an adequate education? Why does he not have a job? Why is his love life lacking? These questions could be used as a spring board to address a multitude of obstacles people like Crews and others with spinal cord injuries routinely encounter. Crews is far from unique--indeed, the only thing that sets him apart from others is his wish to die. He is the exception not the rule to how people cope with spinal cord injury. You will never read about these other people. They do not make good copy. They will not reinforce societal beliefs that a devastating spinal cord injury such as the one Crews experienced is a tragedy. This tragedy precludes the ordinary--a job, family, education, and a girl friend. Again, I ask why. Why does a disability, even a high level spinal cord injury, preclude a rich a full life? The answer is not complex--society does not value or support such lives. The fact is Crews has the same inalienable civil rights as any person that can walk. He has had these rights since the ADA was passed. Just because the law states he has these rights does not mean we as a society support them. I know they do not.

I had not given Crews much thought until this week when his name came up in the news yet again. I had assumed Crews was doing better, that positive change had taken place. The jaundiced part of me thought perhaps publicity is not such a bad thing. I was wrong. Crews is still unhappy and wants to die but for different reasons. The $4.2 million settlement Crews received after he was injured is gone. He is now deeply in debt, likely to lose his home because of his medical bills. Where will Crews end up living? In a nursing home. Life in a nursing home is in the words of Crew "hell on earth". For a young sentient male this is quite true. Crews stated "I thought I wouldn't live to see this. It started to dawn on me last year that money was leaking out like a sieve. I will lose the one thing that makes my life tolerable: my privacy and my family." Going bankrupt to pay medical bills is exceedingly common today. But for those with disabilities the choices after one goes bankrupt are exceedingly limited. There are inherent dangers here. People with a disability know this as does the medical establishment. And like all others humans people in the medical establishment are subject to individual bias. This bias can be deadly for people on the margins like Crews and others like me with a spinal cord injury. Such individuals do not receive equal treatment socially or medically. We are, I am afraid, returning to a harsher time when able bodied people determined when disability is too much to bear. This thinking is so wrong it is staggering to me. The obstacles we people with a disability encounter are largely social. No one wants to engage in a discussion about the reasons why we remain socially isolated, under educated, and unemployed. The only thing keeping Crews in his room are social barriers we as a society are willing to let exist. Crews went to a local college and had dreams of a career--dreams he gave up on because the barriers to going to a school away from home were too overwhelming. This too is not unusual. Indeed, I refer this as academia's dirty little secret. High level quadriplegics are effectively barred from attending college. The social and architectural barriers are too imposing.

How many lives such as Crews will be lost before we choose to change? How many lives have been derailed already? It is so easy to misconstrue the lessons we can learn from Crews hardship. For example, in a story about Crews last year year the UWM Post noted:

"He does not have a career. He does not have a social life. He does not have a love life. He is stuck in a bedroom, day after day after day. He cannot enjoy and appreciate all the little things we, as able-bodied beings, take for granted – for instance, the sun warming our faces and the sand beneath our toes as we walk along Lake Michigan’s beach on a beautiful day. Take a moment to reflect if a life without all the simple pleasures sounds like something you would be content with.
The Journal Sentinel writes, “Yet stories like Crews’ are troubling to disability rights activists. They argue his quality of life doesn’t have to be inherently bad; rather, they say, society doesn’t provide the resources for Crews and others to live a satisfying life.”
My question is: what resource could possibly be provided to someone in Crews’ condition? I have wracked my brain trying to think of something – anything – that could even begin to make a person destined to the confines of their bedroom, due to accident or illness, feel as if they were not missing out on, well, life. I’ve got nothing."

Let me respond to this inane melancholy. I have not felt my toes in 32 years. I have tenuous control over my bladder and bowels. I cannot do many things, ordinary things, those that can walk do without thought or appreciation. So what. I do things differently. I use a wheelchair and the barriers I encounter are numerous and unnecessary. Yet when I go outside my home and feel the sun on my face I too am happy. I am sure Crews is happy when he too feels the sun on his face. I cannot walk along the shores of Lake Michigan. I have instead paddled along the shore in my kayak. I have enjoyed pushing my wheelchair for many miles in the city of Chicago and been to many of its famous museums and done research at the University of Chicago. I have eaten at many steak houses and consumed my fair share of deep dish pizza and hot dogs too. In doing so I have concluded life is pretty sweet. The problem is not with my body but with the maudlin sentiments in the UWM Post and larger news outlets like the New York Times, Chicago Tribune, and LA Times help perpetuate. All these papers have assumed Crews request to die is reasonable. Sorry this is just wrong. If I have learned anything about life since I was paralyzed when I was 18 years old it is that life is what you make it. I consider myself lucky. I have a great family, a son I adore and love more than I ever thought possible, good friends, and a lovely home. I did not get all these things in a social vacuum. Life may be what you make it to borrow a trite old phrase but I would add the proviso people need to be given a chance and that chance includes social supports. In this era of draconian budget cuts and health insurance companies that operate without ethics or government oversight people like Crews have virtually no chance to lead a rich and full life. To me that is the real story, one that has been ignored.


Unknown said...

"Why exactly does Crews want to die? It has nothing to do with paralysis but rather with his quality of life."

And it's because people make the assumption that it isn't possible for a high level quad to have education and a social life that the request to die sounds so reasonable to them.

What matters in a human life? Love, friends, family...those things are all available to people with disabilities.

I don't think the purpose of life has anything to do with being able to stand.

Why is it that we don't value lives that aren't lived on two feet? What do feet have to do with the meaning of life? Absolutely nothing.

Oli said...

Well it goes to show how good we have things over here in New Zealand
I've got Duchenne muscular dystrophy and I don't have to pay for any of my healthcare (apart from doctors appointments and prescriptions most of which are subsidized )
here is a list of things that the government has paid for

- 4 electric wheelchair's and all the repairs
- 2 pressure relieving air mattresses
- hoist for transfers
- spinal fusion from C5 to L4 8hrs surgery 10 days recovery
- 53 hrs/week of care, one of my friends has got 75
- 250nzd/week living allowance
- BiPAP machine

Everything on the list this fairly typical over here with other guys that have the condition and if your disability was the result of an accident they will pay 80% of your pervious income indefinitely I think.
I am not trying to boast or anything am very surprised how bad the healthcare system is in America, it sounds totally fucked to me.

Becs said...

Oli - Has NZ reversed its refusal to allow immigration by people who have severe disabilities? Just curious.

william Peace said...

Ruth, As I have written many times on this blog, walking is over rated. It is a nice ability to have but hardly necessary for a rich and full life.
Oli, Yes, ur health care system is profoundly flawed. It thus reflects the complexity and great degree of social disparity. Hopefully Obama can push through needed reforms. People are suffering terribly here.
Becs, Good point. New Zealand, Australia, UK, and Canada all bar people with disabilities from immigrating. This bias is simply wrong and I wonder how it it remains legal. No country has an ideal health care system that meets the needs of all people.

Oli said...

i didn't know people with disabilities weren't allowed emigrate thats quite unethical. i had a look on the website and those laws still stand


william Peace said...

Oli, Yes, it is unethical. Glad you think so too. I bet most citizens of your country have no idea such a law exists. It effectively bars any person such as myself who is paralyzed from immigrating to NZ, UK, Canada and many other countries. This is blatant discrimination.

Anonymous said...

Okay, I'm going to ask a few really obvious questions here, but they're not meant to be rhetorical.
Why do some people find it so hard to accept others who are different from themselves?
Can't we just share universal love & respect with all others, even though they're different? Why can't we celebrate our diferences instead of being afraid of them? It's great to be different- it means we're all wonderful, unique people who each have a special gift to share with all humanity. Can't we remember that sharing is caring? Can't we treat others with the same kind of courtesy and human dignity that we want to experience for ourselves? Can't we all just get along?
"Come on people, smile on your brothers, everybody get together & try to love one another."- The Youngbloods, "Get Together".
Now I'm going to go finish painting flowers & peace signs on my jeans, braiding love beads into my hair, & tie-dying my John Lennon "Imagine" t-shirt. I'm not being sarcastic- I actually do all of those things, and I'm proud of it, too.

Liz said...

As always, you totally nail it. Thank you!!!!!


Unknown said...

My own blog is feeling a bit pointless, as you always say exactly what I'm thinking! And you say it better ;) I keep wanting to quote your posts at everyone I know!

william Peace said...

Cait, I love your enthusiasm for life and passionate support. The world would be a better place if hippie chicks ruled the world. As for why difference is such a problem, I blame fear. It is a primal feeling, an instinct some humans cannot overcome. It seems to be the only cure is education.
Liz, As always, I appreciate the kind words. I may have nailed it but sure wish the mainstream media would do the same.
Ruth, What is the old saying, great minds think alike. No ego problem here! Seriously it will take more than a few lone voices to get society to change. Hence your voice is very important. I also do not touch fiction as you have. We need to push disability rights on many fronts. And go ahead and quote me all you want.

Unknown said...

:) Fiction is my main passion, and my hope is that novels and stories will enter people's hearts more easily, allow them to feel close to disability issues because of love of my characters. That's my ambition, anyway!

william Peace said...

Ruth, Just ordered your book via amazon. Maybe one day you can sign it. I tried writing fiction. I was without question the worst writer in the history of fiction.

ENV said...

i am a quadriplegic on life support due to ALS (Lou Gehrig's Disease). I have continued on with my life as best I can because I refuse to give up. The privilege of living, however, has bankrupt me and is bankrupting my family. I would love to continue to work to support myself (my IT skills are intact and, with occasional physical assistance, I still manage my home systems), but society would rather I just die. I am not alone: There are very many like me who would rather remain productive members of society. As it is, I volunteer in ways that help my fellow PALS, maintaining a blog and assisting with advocacy.