How Far Does Being Nice Get You?

The answer to the title of this post is not far. Why do you have to be such a hard ass all the time is a common question posed by people who read my blog. Recently I have been getting a lot of this type of email and similar comments on various posts. I struggle to answer this question. The why are you a hard ass question I get. I am a hard ass in many ways and I do my best to respond. Those readers who angrily maintain I am a bitter asshole are just wrong. The people that level this charge utterly miss the point of my writing. I suspect I am deemed a bitter asshole because I do not aspire to be "normal". I also have nothing nice to say about the cure industry.  My lack of interest in normality and cure makes me persona non grata in the estimation of some. As to anger, I plead guilty. I am angry 35 years post injury. My anger has not one thing to do with my body.  My anger is not directed at any single individual or biased organization. I direct my anger outward in a healthy and what I hope is a constructive manner. I am angered by injustice, social and economic inequity, and the violation of civil rights. I am angry people with a disability twenty plus years after the ADA still encounter needless social and attitudinal barriers. My anger is never about me. My anger is designed to do one thing: prompt social change in terms of disability rights so the next person with a disability does not experience the same level of discrimination I did. Like Ed Roberts, I see nothing wrong with anger. When channeled in an appropriate direction anger can change the fabric of society. Look what MADD (Mothers Against Drunk Driving) has accomplished, a movement that was started by angry mothers whose children tragically died. Within disability rights a few angry activists in Denver spawned a national movement to get lifts on buses. Fast forward to today: I easily (albeit slowly) board a bus and navigate New York City. A few angry activists in Denver are responsible for sweeping change that has benefited millions of people nationwide.

Readers who think I could be nicer have a point. I suppose it is possible to be too cranky. So in an effort to be not such a bad cripple I will write something nice.  Over the last two years or so I have occasionally seen the name of a paralyzed woman Carolyn Pioro. Ms. Pioro was a circus performer and competitive athlete until she fell from a flying trapeze and experienced a spinal cord injury. She is a quadriplegic. When I read about Pioro, it was usually with reference to fashion. As someone with a body that is extremely crooked finding clothes that do not need tailoring is not easy. Hence I look at clothing websites that are designed for people with a disability. My search has not as yet resulted in any good finds. But I did come across Pioro's name who struck me as a smart woman. Ms. Piorio is an attractive and fashionable young woman who seems to have a great sense of style post injury. I know nothing about fashion though I suspect it is difficult for women to find fashionable wheelchair appropriate clothing Regardless, this is where my knowledge of Pioro began and ended until yesterday. 

At Bloom, an interesting website about disability, had a short post about Pioro on May 27 (http://bloom-parentingkidswithdisabilities.blogspot.com/2013/05/i-have-to-let-go-of-my-past.html ). Ms. Pioro is giving a talk in Toronto June 6. The title of Pioro's talk is "I Have to Let Go of My Past". This notice led me to read an excellent essay by Pioro in Chatelaine (http://www.chatelaine.com/living/real-life-stories/carolyn-pioro-on-life-after-a-devastating-spinal-cord-accident/). Pioro gives a gripping account of her accident in 2005. What struck me was not the circumstances of her injury but her reaction to it. In a section entitled Enforced Isolation Pioro wrote after her injury:

I had very few visitors during my two months in intensive care. I kept it that way on purpose. I knew that I wasn’t going to beat this paralysis thing, that I just needed my condition as a quadriplegic to stabilize before I could move on to whatever was next. I allowed only my mom, dad, brother and soon-to-be-sister-in-law and two close friends from the restaurant I had been working at to come see me, and what they saw looked pretty grim.

Pioro went on to note she permitted only six visitors:

Those six amazing people from my innermost circle came to see me, bringing comfort and normalcy with each visit. My dad would read me the newspaper; my mom applied hand lotion, as the rough calluses I had built up were beginning to disappear. My most loyal friend from work, David, would come in twice a day and talk about the goings-on at the restaurant and really just anything, even something as trivial as his neighbour stealing his garbage bins. Since the breathing tube still made it impossible to speak, having someone to listen to, someone to sit beside me, was exactly what I needed.

To me, this is a perfectly logical way to handle a sudden paralyzing injury. Establish medical stability. Allow precious few people to visit while hospitalized and as the body heals consider how one can move forward. There was no talk of cure or suicide. She was forward thinking at a time of great stress and angst. And Pioro did what I did as do the vast majority of people who experience a devastating spinal cord injury. She worked hard and learned. She learned how to direct her care. She learned how to instruct people to do mundane things such as dress her, clean her body, brush her teeth and manage her bowel and bladder routine. She learned how to use a head controlled wheelchair. None of this is easy and like countless others realized what it is like to live with a life long disability. Unlike in the United States, Pioro received extensive rehabilitation (eight months). She was I assume well prepared for life with a spinal cord injury. Reality hit home ten months after her injury. She moved into an assisted living residence. This sounds nice. It was not. She wrote:

in reality, a sketchy high-rise building — plagued with violence, drug dealing, bedbugs and cockroaches. There I received 24-hour assistance from a staff of personal-support workers. I met a handful of remarkable women who really did ‘get’ the job and were genuinely helpful. Unfortunately, they were not the norm. The rest treated my apartment solely as their workplace and me as an inconvenience that got in the way of their watching The View.
One morning I asked to put on a crisp white shirt that had little hooks and eyes and a skirt with a long double zipper. My attendant mumbled under her breath the entire time she helped me and afterwards asked, “What are you getting so dressed up for anyway? It’s not like you have a date.” Later, she filed a complaint stating that my clothing had too many hooks, clasps and time-consuming accessories. Staff members were afraid of straining or spraining their hands and wrists while assisting me. I’m not sure what made me feel worse: the dig about dating or the fact that someone whose role it was to act as my hands would carry out her job in such a hurtful way. I was left feeling crumpled. Being someone who loved fashion, I saw my life heading into an abyss of yoga pants, sweatshirts and Crocs.

Welcome to the world of disability. What a shock this is; not one's disability but the social and practical reaction to it. This is a staggering fall in terms of how others value your existence. It can be and is too often a crushing experience. An untold number of lives have been destroyed. It takes great inner strength and depth of character to know others, in some cases highly educated others, believe your life has no value. Worse, your existence is an economic drain on the system and people that experience such a devastating injury should die. Paging Peter Singer. 

The best part of the essay was the closing section, Hope By Degrees. 

What hope is there for me and the estimated 86,000 Canadians living with a spinal cord injury? Medical advancements are being made, but there’s still so far to go. I would be lying if I told you I’m not gutted by the fact that my dad is never going to walk me down the aisle; I’ll never hold a niece or nephew or measure my hand against my mom’s as we used to do. Would I trade my human soul for working cyborg parts? In a mechanical heartbeat, yes. I've lost a lot of friends since the accident, certainly not because they’re cruel and unkind, but our lives are just so very different now. I’m often asked — rather incredulously — how it is that I wish to succeed in digital journalism and publishing, yet I don’t even have a Facebook account. Although I think Facebook is an incredibly useful tool for all facets of media, for me personally it’s not a good fit. How best to describe what it’s like lurking on Facebook? It feels as though my lungs are slowly filling with warm water, and I’m drowning. I’m reminded  of how old friends and ex-boyfriends are travelling, getting married, having babies and living out their lives in ways I had assumed I would. To stay afloat and to have a future, I have to let go of my past. 
For me, it’s not going to get better, but it will get easier. I’m still as reluctant to write... You see, when there’s just one thing and one thing only that you can do to make your mark in the world and create a career, it can be deadly scary. But I’ll continue working, editing and, yes, even writing. I will strive to make my voice as strong as my body once was.

I deeply regret the fact I will not be able to attend Pioro's talk. For me, 35 years post injury it brings me great joy that people like Pioro get it. Getting it means life before and after spinal cord injury is radically different. Life is not better or worse but rather just a continuum of expereinces. One could compare a spinal cord injury to other life changing events: marriage, becoming a parent, getting divorced, or death. All are life altering events that require to some degree a complete and radical reinvention of the self (I use self in a Goffmanesque way).  For those that experience a spinal cord injury, the reinvention process after injury is highly visible and accompanied by a stigmatized identity. It is not the disability itself that is a shock to the system but rather the social response to a paralyzed body. I failed to understand the stigma associated with disability in 1978. I fail to understand stigma in 2013. Forty years of progressive legislation and social advancement and I still find myself educating people about disability. Some days I am inspired to change the world one person at a time. Other days, an ordinary day like today, I will not leave my home because I simply cannot face the a hostile world. Thankfully these bad days are rare and my labrador Kate is thrilled to have me all to her own.