Information Overload

When too much is just as bad as too little.

As a disabled person, I know that timely and up-to-date information is often a necessary part of my life and overall comfort. Keeping track of new medical discoveries, new drugs, new resources and new adaptive equipment can quickly become an overwhelming task. In this regard, the internet can be both a blessing and a curse, and more often than not finding what you want can be an exercise in frustration when presented with endless pages of links to a plethora of websites. This is why special websites, called "online directories" are such a good idea.

One such directory is the Online Yellow Pages. Just like its offline counterpart, the online version of the "Big Yellow Book" allows one to search for specific things in specific areas, thus narrowing the amount of information one must wade through in order to find meaningful results.

In addition to national online directories, we're now seeing a sudden growth in regional directories, tailored for specific groups in specific regions of the country. This trend is going to help the disabled community the most as the information age explodes and makes finding exactly what you want an increasingly difficult proposition.

We've needed something like this locally for some time now, and I'm happy to report that help is on the way. I have begun the daunting task of collecting as much relevant information as I can on agencies, products, services and resources that might be of interest to a disabled person (or a caregiver) living the NW Ohio region. The end result will be a new online directory website to be called the "Toledo Access Guide" (http://toledoaccessguide.info) -- and this is where you come in.

As I said, it's a daunting task. What I need most right now is information, and first-hand experiences. Obviously I can't visit every government building and agency in the greater Toledo area, but you have probably visited at least one or more. Your input would be invaluable as I collect the types of information on access and services that will make the Toledo Access Guide a useful "one stop" resource for our disabled community.

So how can you help? Know of a good resource (activity center, merchant, etc.) that you feel has goods or services that you'd recommend to another disabled person? Then please drop me an email at:

toledoaccessguide@buckeye-express.com

and I'll do my best to add it to the site as quickly as possible. I know that together, we can make a difference, and build something that we all can be proud of. So how about it, Buckeyes? Are you with me?

Words Have Power

Sticks and stones may break my bones...

Words can be very powerful tools. Some words can bring harm ("I hate you") and some words can bring healing ("I love you") and many words fall somewhere in between. The proper use of words comes with a great responsibility. More on this in a bit.

Then we have labels -- words used to attach a specific identifier onto a person, place or thing. These too can be used to do evil, as in a racial slur, or to do good, as in an expression of endearment. Again, most fall somewhere in between -- and many labels can have multiple meanings, or at least wind up being used in a multitude of ways.

Our common language is a fluid and constantly growing thing, almost with a life of it's own. New words seem to spring up every day, while some fall idle due to lack of use. The advent of texting has enriched our language even further, with new words like "L8ter" (Later) and abbreviations like "LOL" (Laugh Out Loud.) Then we have words such as "Groovy" which sort of died out with the sixties.

So what does any of this have to do with disability issues?

A few weeks ago I talked about finding our own voice. Education has to be a part of that -- educating ourselves on the proper use of words, and their power, and educating others on the proper use of labels, and the perceptions that come with their use. Often the perception of the meaning of a word trumps its actual meaning, right or wrong. To deny or ignore that simple fact is folly.

Most of you are no doubt familiar with the fairly recent term, "political correctness." Simply put, political correctness (or PC for short) is a sort of enforced politeness intended to prevent us from using certain words, terms or labels which others may find offensive. Over the last 55 years I have seen the word "crippled" be replaced by "handicapped" -- then "disabled" -- then "differently-abled" -- and finally... well, I'm not sure what the polite (PC) term for us is anymore. It's so hard to keep up these days. Of course, we've had a fairly long string of negatively-charged labels to contend with as well. "Gimp," "Dummy" and "Retard" come to mind immediately. I'm sure you could add more to this list without too much effort. Our ability to use words to label is both rich, and creative. It also lends itself to cruelty, both intentional and otherwise.

Which brings me around (finally!) to the point of today's Blog posting. A man by the name of Randy Cassingham recently coined a new word, "tardwit" and used it in promotion of his own (and excellent I might add) weekly e-zine, This Is True. As you can imagine, the firestorm began almost immediately. How dare he use such a word (a combination of retard and dimwit, in case you were curious) to describe the "ignorant boneheads" (my words, not his) that he writes about in his e-zine? How positively... non-PC!

His argument, which you can read here (along with the story of how "tardwit" came to be) is that "retard" is a perfectly acceptable word. In this, he is correct. Retard means "to slow" (ex: "Pressing down on the brake pedal of a car will retard its forward movement.") and dates back to around 1840. The disparaging use of the word to describe a mentally disabled person came later.

For the record, I support Mr. Cassingham's right to coin a new word, if he so chooses, and use it in any way he sees fit. We have many rights here in America, but the right to never be offended is not among them. Where we disagree is in the way he has chosen to utilize this word. Clearly, it is not being used in it's original sense... it is being used disparagingly, and in a way that draws an inescapable connection between those in our society who are criminal, but stupid, and those who are (mostly) law-abiding citizens, but mentally disabled. This connection is not directly his fault, nor mine. It simply is. The word retard (or more recently just 'tard) has become ingrained into the lexicon of our society.

It is also his contention that he is trying to reclaim the word, to make it useable again without the burden of the "PC Police" coming down on us for doing so. A noble goal, and one I would support if I didn't know better. Sorry, Mr. Cassingham, but some words simply can not be redeemed -- "witch," "nigger" and yes, "retard" are all words destined to be forever sullied by our culture and our darker human natures. Try as we might, I doubt if we can ever fully reclaim them. You could, of course, attempt your own social experiment. Ask your family members to go around for a week and call every "stupid" person they meet a retard (or tardwit if you prefer.) The next time your wife burns the pot roast, call her a tardwit. I'll bet you the price of a premium subscription that you'll end up wearing your dinner before weeks end.

But that said, Mr. Cassingham, I sincerely wish you well, and I wish you luck with your freshly-minted word, tardwit. To repeat the opening of this post, words have power, and with power comes responsibility, and consequences. I hope yours are not overly burdensome.

To conclude, our words do have power, as do the words of others, but they need not define us, or incite us. When all is said and done, a word is just a word. You can accept it, reject it, ignore it, wear it proudly, or if you feel the need is just, act upon it... but when you do, please remember the old adage:

Sticks and stones may break my bones, but words shall never harm me.

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[Update: Randy Cassingham has decided to abandon his new word, tardwit, in favor of another word which is (in my humble opinion) more appropriately descriptive of the individuals for which it was intended. The new word? "Obliviot" (Oblivious Idiot.) You can learn more about his new word by following the same page link above. Oh, and Randy? Thanks for ruining my perfectly good Blog entry. (chuckle) ]

Birthdays (part 2)

Growing up Disabled.

To continue with last week's post, at the tender age of six I was unexpectedly thrust into a totally alien world. Yes, I started first grade.

Now, school is a traumatic event for any child. New environment, new rules, surrounded by strangers, and no loving parent there to act as a buffer between us and the cold hard reality of life. I wasn't just disturbed... I was terrified. I was not alone, however. I was in the company, sad as it was, of twenty-odd other children who did share at least two things in common with me. We were all disabled, and we were all terrified. I think I may have thrown up on somebody. My belated apologies if it was you and you happen to be reading this.

Mainstreaming had not yet come of age, as it were. This was all still new, remember? A social experiment. So instead of thrusting us into classes filled with "normals" we were grouped into two classrooms, divided by "grade" -- a relative decision based not on our ages, but on our scholastic aptitudes -- and then the noble experiment began.

At first it was fairly easy going. We drew a lot. We painted a lot. We played with clay. They tried to teach our disabled limbs to make the fine controlled movements involved with learning to write. We also learned to read. Some of us needed speech therapy. All of us needed physical therapy. Against the odds, we made slow but somewhat steady progress.

Still, there was no blending between us and those children who ran by us in the playground, stopping only occasionally to stare, and perhaps wonder. Patience, the social scientists were no doubt advising. We need more data.

At about age ten the psychological testing began. One by one we were herded off to private rooms where we spent an hour a day in the company of a woman who smiled a lot, and asked us seemingly pointless questions while we were kept occupied with toys. As an adult, I've seen this process from both sides of the table, and I can't help but wonder if my answers to those questions were the "right" ones. Knowing me, I'm sure I amused her. I was a very imaginative child.

The rest you can imagine. After sixth grade some of us "graduated" and some of us didn't. I was one of the lucky ones I suppose... I ended up in seventh grade, in a new school, filled with kids my own age who had probably never seen a handicapped child in their entire lives. I'll also leave you to imagine what those kids did in the absence of the complementary social engineering that would have come with proper "mainstreaming." Let's just say that I (and they) were totally unprepared for it, and leave it at that.

Of course, times have changed now, at least superficially, and for that I'm glad. We don't hide our disabled children away anymore. They go to school right along with their able-bodied counterparts. There are kids in wheelchairs on television now. Popular kids. Good role models for all of us.

It's been a long road, and we're getting there, but we're not all the way home yet. As I said in the first part of this series, my life hasn't always been fair, but it's been educational. I know that everything I went through as a child was worth it, and for that, I'm very glad indeed.

Birthdays...

... and other signposts along the road.

Today marks my 55th year of life on this planet. It has not always been fun, or even fair, but it has been interesting, and educational.

Fifty-five years ago, almost at this very minute, I drew my first breath. That breath did not come easily, however, or without a price. You see, in 1954 rural America we did not have such modern tools like sonograms to warn us when our babies had somehow managed to entangle themselves within their own umbilical cords. In my case, that near catastrophe didn't become apparent until I made my appearance... blue, shriveled and lifeless.

Lucky for me, my mother's doctor was one of those exceptional breed who takes his daily battle against death perhaps a bit too seriously. According to her account, he worked on me for over thirty minutes, applying every technique and device at his disposal to restart my heart and lungs. Finally, when lesser men might have given up, he finally succeeded. I was alive, and breathing on my own.

We wouldn't find out until two years later that the lack of oxygen during that thirty minutes had damaged my brain. I had cerebral palsy.

What the doctors told my mother next was not the kind of news any mother wants to hear. My prognosis was not good. I would never walk. Perhaps I would never even learn to talk. I might not even live long enough to see my seventh birthday. Predictions based on averages, they quickly added. Perhaps I would beat the odds. Kind souls, offering hope.

My mother chose to cling to hope, as any mother will.

Then two things happened that would make liars out of anyone who had predicted those dire consequences for me. The first was a seemingly random encounter that led my mother to Shriner's Hospital for Children in St. Louis, Missouri. I was seen, evaluated, and then promised the best of care that money and technology could provide, free of cost to us. After a series of operations spanning fourteen years, I could walk, albeit with the aid of crutches, but I could walk.

I also, obviously, did live to see my seventh birthday. Happy birthday to me!

The second "miracle" involved a new social experiment which would one day come to be known as "mainstreaming" -- i.e. placing disabled kids among otherwise "normal" kids instead of teaching them as separate groups, as had been the norm before. Our local public school (Park elementary) was selected for one of these early pilot programs, and I (along with about 20 others) were selected as "test subjects." At age 6 I started school for the first time.

[To be continued next week. - Lawrence]

We Have A Voice

...or if not, we should have.

The only thing more important than communication is community, and in fact, one may not be possible without the other.

We human beings are social creatures by nature. We gravitate toward events which bring us closer, be they birthday parties, sporting events, concerts or funerals. We (usually) build our homes close to each other. We come together for common cause. We come together in times of crisis. We instinctively seek contact with our peers. We do these things in order to better support each other, and by so doing, ourselves.

For a long time the disabled among us have suffered from both a lack of communication as well as community. Isolated by handicap and by choice, we too often sit and watch the world go by, believing that we can do nothing. Isolated, we believe that our voice is too small and insignificant to be heard.

Those of us who feel this way are wrong.

Normally what would follow at this point would be a paragraph or two about the special ones among us who have prospered in spite of their handicap. Beethoven. Helen Keller. Franklin D. Roosevelt. Indeed, these were special people, but my post today isn't about them. It's about the rest of us.

We have a voice. It doesn't make a difference if you walk with crutches, or use a wheelchair. We have a voice. Deaf, mute, blind or otherwise... we have a voice... and together, we also have a community.

The internet has made much of this possible. Where before one had to be physically present to engage our peers in meaningful dialogue and community activity, now we are connected by wires and electricity and adaptive devices. The internet, along with creative invention, have leveled the playing field for many of us who lived in virtual isolation before.

The internet has given us a voice. Be it through email, or even blogs such as mine, we now have the ability to be heard throughout the world. The internet has provided a platform for communities and blogs like this one which enable almost anyone to meet and socialize with others of like mind (or not) and all from the relative comfort of our own homes. Limitations to mobility, once an imposing barrier to communication and community, are breaking down. At last, we finally have a voice, and a place where we can be heard. It's a pearl beyond price.

But now we need to learn how to use it.

If you're reading my words now you already have the tools you need to get started. A computer, yes, but you also have something even more precious. A beautiful mind, and a life filled with history and hard-won knowledge about what it means to be disabled in an "abled" world. Right now, perhaps on the other side of the planet, someone has a problem that you've already solved. You have a voice. Share that solution!

How?

Well, you could create a Blog like this one. It's not at all difficult, and is free at websites like Blogger.com or Livejournal.com. Not that ambitious? Join an online community like BuckeyeBarrierBusters.ning.com (if you're local) or any number of its national counterparts. You can even reach out into your own community for opportunities to network with others who share your disability. The point is, we all need to start using our voice. It's healthy, and it's ours to use.

I'll be looking for you on the internet.