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Thursday, August 29, 2013

Big Trouble: I Dare to Take on Inspiration Yet Again

All my life people have a penchant for giving me nicknames. In my teens one nickname stuck--trouble. I would enter a room and one friend would always remark in a slow drawl "Here Comes Trouble". With each word his voice would rise often prompting laughter. I suppose I was trouble in part because I had a penchant for asking a lot of questions. I simply did not believe what I heard or read. Then and now I do not accept the status quo--I question everything. Today I am going to do something that will get me in big trouble. I am going to take on the concept of inspirational. Whenever I deconstruct the larger meaning of inspirational or worse yet the cure industry associated with spinal cord injury, I know I am going to get slammed with email that borders on hateful. I am sorry but I sometimes cannot keep my mouth shut. Today is one of those days.

A story is spreading quickly in mainstream news outlets about a young paralyzed bride who walked down the aisle on her wedding day. Here are the bare bone facts. Stevie Beale married Jared VanAusdale earlier this month. Beale was paralyzed in a car crash in 2006 that killed her friend. After Beale became engaged months ago she began to focus on a single goal--walking down the aisle in her wedding dress. She accomplished this goal. There is no question Beale looked gorgeous on her wedding day. She succeeded in achieving her goal of walking down the aisle. After the couple exchanged vows videos on You Tube and multiple news outlets show Beale being carried by her husband in her wedding dress. This is through and through a Hollywood like production that the wedding industry capitalizes on. It is romantic in the extreme yet I refuse to provide a link to the videos that abound. I have no doubt most people who saw the short clip of the bride walking down the aisle were teary eyed. Beale and her husband are photogenic and attractive people. I wish them nothing but the best. I am happy for the couple and especially for Beale who set a goal and achieved it. 

Here comes the proverbial but: I do not like the videos or the way the mainstream news media has framed the story. My problem is not with Beale and her husband. Not at all. Instead I object to the way her wedding day is portrayed. The word inspiration is being used in virtually every story. I read headlines such as "An Inspirational Walk Down the Aisle" or "Beauty Exists" or "Dreams Come True" and cringe. To me Beale is no different that any bride. The way she moves down the aisle is meaningless to me.  The mainstream press however relies on an antiquated notion of paralysis and disempowers Beale. For example, wrote Beale was devastated by the death of her friend and paralysis. The story wen on to note "once a softball player, gymnastics teacher and soccer coach, she questioned what she would do with the rest of her life when the activities that had defined her were no longer physically possible". This is simply wrong and relies on ignorance. I am sure Beale's wondered what life would be like post SCI--all people do. But the idea sports or physical activities are no longer possible ignores the fact adaptive sports are equally enjoyable. Beale is quoted after her injury that she "thought I was doomed to my parents house, to never have a boyfriend, or never get married. I thought I was going to sit at home and rot away". I understand this concern. I had similar thoughts myself in 1978. But no one asks why? Why should any person who experiences a spinal cord  injury worry they will rot away? People rot away because society refuses to accommodate difference--in Beale's case using a wheelchair. Utterly lost is the fact American society remains hostile to the presence of people with a disability. A powerful troika prevents too many people like Beale post SCI from leading a rich and rewarding life: 1. A lack of accessible housing. 2. The lack of accessible mass transportation. 3. Rampant unemployment. To these three variables one can add stigma, social isolation, and the belief it is socially acceptable for a paralyzed person to spend the rest of their life feeling sorry for themselves.

The focus of the mainstream media was what I would expect: it is simply a feel good story. No real questions or issues were discussed that directly affect the lives of people who experience a SCI. Every story relied on an emotional reaction. Paralysis is considered to be an individual tragedy. I see no tragedy in paralysis--it is a physical deficit the vast majority of people adapt to over time. Of course no one wants to be paralyzed, myself included. And yes such an injury changes the direction of one's life. But so do many other life changing events. Think divorce, death of a parent, birth of a child, drug or alcohol abuse, employment or lack of employment etc. The real problem Beale and her husband will face are not glamorous and will likely never be discussed in a mainstream newspaper. The problems I am referring to are not sexy nor do they prompt an emotional reaction. Here I go back to my troika of a lack of housing, transportation, and employment. These issues require some real thought and a re-evaluation of disability in the broadest sense of the term.  Until disability rights and civil rights are assumed by all people to be one in the same stories such as Beale's will continue to be published. Such stories ignore the nitty gritty issues that are barriers for Beale who obviously wants to lead to a rich and full life. 

There is another  aspect of Beale's story that is inherently disempowering. Her husband is consistently portrayed as the reason she could walk down the aisle. In story after story it is noted Beale's husband "brought her back to life" and is well on his way to becoming a saint. What is assumed is that Beale's husband is a saint because he married a paralyzed woman. Only one story I read noted Beale did not meet her husband until well after she was paralyzed. Somehow Beale must have thrived on her own for years. In fact I am willing to bet she is a dynamic human being. Why else would a man ask to marry her? At the end of the day,  I find the entire story simplistic and misleading. Beale's interest in walking, based on what I have read, was restricted to walking down the aisle in a wedding dress. I get this. Many women put great thought into what they will wear on the day they will marry. But this is a very different matter. In fact what I found of great interest was what was not shown. Beale sitting in her wheelchair.  It made me think yet again that a wheelchair could be characterized as a portable social isolation device. And this my friends is the real problem.


Jo Kelly said...

A friend of mine posted the link to this story on FB and everyone who commented had the same opinion - gag, barf, get over yourself. These people obviously do not accept themselves as they are otherwise why do it just for your wedding day? Because in your mind, this disability is ugly - it will ruin the pictures and make people feel sorry for me. ETC ETC.

I've known 2 women who did this for their weddings and while I applaud their goal setting and achievement, the underlying issue is that they too are ableists and degrading themselves with the act. I hope they can both come to some acceptance of themselves eventually. Sad though.

Unknown said...


Thanks again for a great post. I just can’t help commenting on how stories like this one will continue to be published until disability rights and human rights are assumed to be one. You know as well as I do that this sort of story sells newspapers. Most tabloids are relying on their “cripple of the week” story because it sells. Human rights issues is as good as dead when it comes to mainstream publishing – who wants to read about that sort of thing? (yes I know, geeks like us who actually care)

Lately I have fallen back into my cynical ‘why bother’ slump. But I hope I am on my way out of it now.

william Peace said...

Jo, A very clear symbolic message was sent at this woman's wedding. Walking is good a wheelchair is bad. Remarkably I have not received any of the anticipated nasty email when I debunk inspirational stories.
Henning, I agree feel good stories are inherently destructive. It is always a person with a disability who aspires to be normal. Ugh.

LucyinBed said...

Hello, I've just found your blog today and find it fascinating reading. I'm unable to walk / use my legs at all now, due to a nasty chronic pain condition. I should admit I approached your blog with caution, especially this post, because people with spinal injuries are naturally coming at the world of disability in a different way from me. I don't argue with the social model, and were society to leave off stereotyping me etc etc my life would be a 100 times better, but constant pain is reeaally nasty and to some extent nothing can be done about that.

Anyway, I wanted to thank you - I very much enjoyed the articles I've read on your blog today, especially this one. I particularly appreciate, as a woman who actually just about managed to walk down the aisle herself (the year before my legs finally gave up), your refusal to criticise or blame the individual woman or her husband for the at best tedious, and at worst downright demeaning media coverage her 'story' clearly received. I'm from, and live in, the UK, so haven't seen this particular story, but have seen so many like it I might as well have!

I'm a disabled feminist, married to a one-legged man - he has been lucky and so perfectly fits the 'inspiration' model however much he despises it. I do not. It's immensely gratifying to me that you chose to draw attention to the way that the narrative for any disabled woman getting married (and probably most men) is that she has been 'saved' by her 'saintly' husband who has clearly sacrificed his own life blah blah blah.

Like the woman you wrote about, I was already disabled when I met my husband, and my disability had already worsened to the point that I was pretty much bedridden when he proposed - he knew what he was getting! It was not useful for him, and for me, to have this model of the grateful saved (me) and the compassionate saviour (him) applied to our marriage. In fact it made us so 'other', our relationship so idealised, that we were unable to receive the sort of support 'normal' couples get. This model still dogs our marriage from the outside, and will continue to. However it's not often that I hear this spoken about, so thank you.

You've also clarified some of my thoughts on this, and when I come to tackle it in my own (pretty new) blog it'll hopefully be the better for it!

Keep up the good work!

Lynn said...

Argh. The Paralyzed Bride (how she can stand that moniker is beyond me)has her say in the HuffPo:

How is it not obvious to people that the very dynamic of debating the false dichotomy of "equality vs. cure" is, in itself, proof of oppression?