Received a mail recently from a dear ole friend of mine, Joe Genera, and thought it appropriate to share his wisdom regarding labels and the human experience... but first, a bit about Joe:
I first met Joe in biology class as a student at Wake Tech, way back before marriage, before Isabel, in a time when I was "young, wild and free" as they say... As my "right brain" has consistently proven to be far more developed than my left, I quickly aligned myself with a sciency-minded study partner, who happened to be Joe. Not only was he (and remains to be) among the most down-to-earth, likable fellows I've ever met, he's also wise beyond his years and exceptionally intelligent (which made for an excellent choice in lab partners). We became fast friends, sharing many experiences and countless laughs together. I sometimes camped at his house as he was one of the only people I knew back in the days of floppy drives to own a personal computer; I hammered out many a Criminal Justice term paper in his home office in the wee hours of the morning. And he took me to my first theatrical performance - Cats - and opened my eyes (and soul) to a new way of thinking about the poetry of life...
Joe was a slightly older-than-me single dad back then of a beautiful, young active girl who most days drove a sporty teal-blue convertible Corvette - on other days, he drove a custom van outfitted with a lift.
You see, once upon a time Joe was a young ramble-rouser with an affinity for restoring old hot rods... One day, the unimaginable happened when a car slipped from the garage lift pinning Joe beneath and crushing his spine - forever changing life as he knew it. And yet he finished school, worked, raised a daughter, and is a successful business owner, fierce disability advocate and a soon-to-be published author.
(If you want to know anything else, you'll have to read the book, "Arrested Youth" for it's not my tale to tell.)
These days though, back in Connecticut, it is no surprise that he still uses his powers for good, operating an autobody repair shop and program called Team-MuscleCar, LLC: "'TEACHING TEENS - ONE HOT ROD AT A TIME' tm Mentoring to keep kids in school by having them use their hands and minds, and expanding their life skills."
----------- from Joe...
Crystal - just saw your post about labels - thought this might hit a cord with you. An Op-ED piece I did last month.
"LABELS ARE FOR JARS – NOT PEOPLE." – Joseph P. Genera
In the thirty years since a car slipped off a lift, falling six feet through the air before breaking my back as it crushed my spinal cord, I have gone through many life changes. Some, like adapting to a world from a suddenly shorter stature and navigating a bumpy world via a wheelchair, took some getting used to. Other changes, like how the world saw me, or more pointedly - labeled me as, has been one of the more challenging aspects to get used to.
In the three decades since my world so abruptly changed, I have gone from being a ‘cripple’ to a 'person with a disability', with about ten other labels in between. Not because I myself had made any significant changes, or had some miraculous healing come my way. No, the different labels arose from our American society deciding that one name was better, or more ‘politically-correct’, than another. And as with other minority groups, I was personally never asked myself what I would like to be called.
In my own lifetime, I have seen the currently 'P.C.' African-American named population referred to as colored, black, people of color, evolving to today's accepted 'African-Americans.' But, I don't remember there ever being a vote taken of that population, asking them what they as a people, would prefer.
In the case of the 55 million 'persons with disabilities’ in America, there has never been a caucus of any kind that has asked, "What would you like to be called?"
And yet, in the last thirty years I have been dubbed everything from crippled, infirm, afflicted, handicapped, handi-capable and differently-abled. I have been wheelchair-bound, as if I never leave the chair to bathe, sleep or love. One of my least favorite of all is to be branded as an ’invalid,’ which suggests that portions of society thinks that people such as myself are not considered valid members of our world.
Today, the favored phrase seems to be 'person with a disability.' If there has to be a label, this one is probably the least offensive, in that it at least puts the person before whatever condition or impairment that affects his or her life. While positive in nature, who knows how long this current term will be in favor before our polite world decides that I need to be called yet another unasked-for label. In fact, the ‘new and improved’ title that the national media seems to be trying to adapt today is the instantly dependent sounding label: ‘special needs population.’
No, no, no! People with disabilities do not want to be seen as special – they want to be seen as people, period. And they/we certainly do not want to be perceived as needy. As disability can affect any one of us at any time, with little consideration as to race, sex, religion or socioeconomic status, those who come up with these ‘titles’ should ask themselves – ‘If I were hit by a bus tomorrow and became paralyzed, would I want to be immediately affixed with the label ‘special needs person?’
In this country, much time, thought and energy go into defining what is politically correct, what words are best to use to ensure that the majority of a specific population is not offended, and so that the rest of society feels good for having come up with the next ‘right thing.’ Even within the ranks of the various disability groups, there is constant in-fighting as to what their own monikers should be. Energies and resources are wasted on such pursuits, when the time could be better used to improve the very real physical and psychological barriers that people with disabilities face every day.
No one wants to be offended, and most people with good sense do not want to offend. That’s the reason why everyone from the average person to the national media struggles with the question "What do we call 'those' people?"
I know exactly what I would say if I were ever polled, or had to vote for the very best label for the world to bestow upon me.
Just call me Joe. Thanks.
----------- my reply...
Dearest Joe, as long as I've known you - a lifetime it seems (I bought my first legal 6-pack with you if you recall [and much to my 21-year-old disappointment, was not even carded]), even back in pre-Isabel days when life for me was oh-so-much-easier though exceptionally less profound - I have never, ever thought of you as "disabled"... You??? LOL Not able to do something - outside of say a running long jump (which if this two of us were competing, you'd probably win truth be told) - preposterous! Pfft... And you know I am not saying this out of some misplaced need to defend myself regarding what I assume you to believe I think; I know you know me... My point is, you are among the most able and capable, intelligent and AMAZING human beings I have ever been blessed to know - who has yet once again, smacked my sensibilities upside the aha... reminding me of the absolute profundity of it all: human connection.
It's really all the same isn't it? There is not a one born among without purpose and no purpose is without importance, nor is one purpose greater than another... regardless of perceived 'ability', color spectrum, belief, education nor status. "Normalcy" indeed is a manmade definition to corral ourselves within our comfort zone. --Until we each recognize these truths within ourselves and step outside of our own limitations, we are doomed to remain ourselves "disabled."
I never imagined I would have another child after Isabel. When Liam came along, it was like being a first time parent all over again; a whole different ballgame! --As he grew and began to become aware of his world, talk and ask questions (OMG, does he talk!), he would ask me why sissy didn't speak or why she does things that she does... I tried to explain to him once that Isabel was "special"... I thought that explanation was a pretty good one and seemed to quiet his curiosities (I should have known better). The next days he came to me crying and told me that he wanted to be "special" too. --From the mouths of babes! Oh, talk about breaking your heart! ...So we had a long talk about purpose and God and how Isabel is as God intended for her to be; that while we may never know her intended purpose for this world, the fact that she does not speak verbally and doesn't think the same way we do was part of her purpose and that purpose was very important... That just maybe her purpose was to teach us to be better people and understand how to love everyone the same?
I have always made a conscious effort to never describe someone by their abilities, ethnicity, etc. because I did not want to plant the seed in his thinking that these things were a measure of an individual. --About a year ago, when Liam was four, it came home to me in such a profound way when he came home from preschool telling us about his new friend, "Johnny"... Who is Johnny we asked, trying to put a face with a name? You know, he said, the boy with the super-hero eyes - and then he put his fingers on each temple by his eyes and pulled back the skin to show us... (Johnny's parent's are of asian decent.) To Liam, his new friend was nothing short of a rock star. =)
Joe: In this world, in this life, we tend to get stuck so often in the gravity of ourselves, our own lives, problems, issues and goings on; I am no less guilty. Though I try to make certain that those sacred souls in my life always know how much I love them, that they have mattered to me in magical ways, and I could not have made it this far without them... You are one of those sacred souls - I know I don't say it often enough... so, just to reiterate: Not only have you shaped me in ways you will probably never know in all the years, but I love you dearly.
Thank you for your words dear one...
----------- from Joe...
Absolutely! And please know that was in no way a rebuke of any kind to you ...at all! I just love reading your posts, personal and the NC ones and thought it might fit... And it does, cuz of who you are!
I am so glad you came and asked about my motorcycle 20 years ago. I love you too Crystal
P.S. And of course you can post!
