The Wisdom of Lifes' Experiences.

The older I get the more firmly I believe in the concept that with age, comes wisdom. Nothing is a better educator than life’s experiences.

I work in a field that constantly requires us to have one eye looking over our shoulder to make sure we are within our bounds legally. It seems as though I’m constantly hearing references to the law, whether it be 504 or the ADA, the two laws that dictate the rights of individuals with disabilities.

Section 504 was signed into law in the early 1970’s, while the ADA took effect in 1990. They are the only laws mandating the civil rights for people with disabilities and are still in their infancy stage when it comes to clarity and inclusion. It will take years of litigation—lawsuits filed by citizens, businesses and agencies—before 504 and the ADA will be fine tuned to the point where disability rights are clear and relatively unquestioned.

Having been injured in 1970, there were no civil rights laws pertaining to disability. I entered into the world of disability during a time when accessibility was granted out of the goodness of someone’s heart, not because the law directed them to do so. And even when 504 did kick in, it only covered those entities that receive Federal financial assistance. Not very comprehensive to say the least. Also, if anyone chose to ignore this law there was no real mechanism for enforcement. No formal procedure for filing a complaint to rectify any alleged illegality; thus the reasoning behind a second law, the ADA.

In today’s world most people are well-versed, or at least well aware of the laws and their interpretation of them. Unfortunately many times this awareness is simply that—awareness. It is not an understanding of the specific intentions, or interpretation of the law.

The students I work with oftentimes do not have a clear understanding of what their real rights are as individuals with disabilities. They assume, sometimes incorrectly, that whenever something is not 100% accessible to them, that laws have been broken and, as a result, threats are often made.

At times, when people threaten lawsuits over what to me are trivial issues that are well outside the boundaries of the laws, I can’t help but reflect on the fact that the accuser oftentimes never lived when there were no laws protecting their rights. They seem to carry their knowledge of the law in their hip pocket—like a gun ready to shoot—throwing it around as if it’s their ticket to solving any accessibility issue that might arise, without really thoroughly understanding scope of the law. When confronted with reality they quickly back down and sometimes walk away like a dog with its tail between its legs.

Oh yes, accurate knowledge is powerful. But the wisdom that comes with experience is far more understanding of the whole picture. Now, I’ll be the first to admit that I don’t pretend to know every tidbit of information contained in these laws, but I do have an overall understanding which is usually accurate. With that said, I am grateful for having had the experience of living with the disability without and with civil rights laws for people with disabilities.

Here I sit.

Living with a severe disability is really not that bad, that is, as long as things are going well. But this past weekend I ran into a situation that made me stare directly at the sometime cruel and harsh reality of my disability. Even though it wasn’t a life-threatening, dangerous or unhealthy situation, it brought to the forefront just how vulnerable I can be.

Saturday evening my wheelchair started acting up. Sometimes my chair would have power, other times it wouldn’t move. All I could do is pray that it would get me through the weekend so that on Monday I might be able to get it fixed, or at least looked at. What was wrong was beyond the ability for someone without specific training to fix.

Sunday morning I woke up to discover that my chair wouldn’t move; not even budge. Nothing I did would rectify the situation. So I was left to the mercy of those living with me to push me manually to wherever I needed to go within the house.

Unfortunately both of the people who live with me were busy all day Sunday. So I had to choose a spot in the house and I felt would be the best for me to sit for potentially the rest of the day. My choice was in my front office next to the phone where, if needed, I could at least access the outside world.

So there I sat, literally unable to move, from 9:00 a.m. to 5:00 p.m. when one of the individuals I live with returned from work. By then, considering I had just spent the last eight hours staring at the photographs that hang on the wall in front of where I was sitting, I wasn’t in the best of moods. It was a true test of my patience, to say the least.

Yes, sometimes living with the disability can be a real pain in the ass.

The Circles of Life.

15 years old is awfully young to become a C-4 quadriplegic. But sadly to say it is during these younger years of life (16-30) that most traumatic spinal cord injuries occur. The resulting condition of a cervical SCI along with the process of adjusting to your new life is almost incomprehensible to most.

For many years after my injury, when I thought about my future would be like, it was comparable to looking into a foggy crystal ball. I wasn’t able to see much. I just couldn’t seem to grasp what life had in store for me. Would I ever have a job, be able to support myself, own my own home or have a family? There was no clarity to my future or what life had in store for me.

Slowly, after I moved to Arizona and started attending graduate school, the fog that was blocking my vision of the future slowly began to lift. Through a series of unexpected and unplanned events, I happen to stumble upon a career that crystallized my view of where I was going in life.

Since then I’ve been very fortunate. I found a career I love, own a modest and comfortable home and have a fulfilling lifestyle. Having completed almost 24 years in my profession I can honestly say life has been good to me.

Now, as the aging process starts to settle in, I feel as though I am slowly losing control over what direction my life is taking. Ironically, over the past year or so, the fog seems to be creeping back, again slowly beginning to blur the vision of my future.

I’m beginning to wonder how much longer I will be able to endure the rigors of working full-time. How much longer will I be able to maintain my current independent lifestyle? Will I ever be able to afford to retire? How long will my health hold up?

Until recently I never thought seriously about the answers to these questions. Life was good. But as the inevitable tide of age moves in, I again wonder what the future holds for me.

Seems my life as a quad is coming full circle.

Gimp Like Me.

Everyone, and I mean everyone, should be forced to face some kind of discrimination for at least one year. 365 consecutive days. Maybe that tactic might help eliminate some of the subtle and perhaps even a portion of the blatant oppression many people are forced to put up with.

Believe me, I’ve experienced more than my share of discrimination since joining the ranks of the severely disabled. Some of it intentional, most of it unintentional. But regardless, it hurts just the same.

Do you know what it feels like to be out and about doing your thing and you see people intentionally avoiding you simply because you’re using a wheelchair or perhaps you walk a little differently? It really makes you think. What is it about a severe physical disability that intimidates some people?

I remember reading a book when I was younger titled Black Like Me, by John Howard Griffin. Published in 1961, it was about a white man who dies his skin black and then travels through the deep South during the height of the black civil rights movement. He almost lost his life simply because he changed the color of his skin. The discrimination he encountered was outrageous and resulted only because of the color of his skin. Nothing more, nothing less. Why is that?

The human species is by far the most intelligent form of life walking this planet, yet our behavior can be so primitive it’s sickening. We can figure out how to fly a spacecraft to the outer regions of our solar system while at the same time we can’t figure out how to embrace everyone else on our own planet.

Discrimination. Sometimes I just don’t get it!

Is there a Dr. in the house?

It seems I’m constantly going to doctors appointments. Not because something is wrong, but for regular checkups. You know, basic maintenance. Tuneups!

I have my spinal cord injury doctor, a neurosurgeon, a cardiologist, a pulmonologist and a urologist. Yeah, that’s 5 doctors. And that doesn't count the specialists I'm occasionally referred to. Thankfully they’re all great doctors and good people. And thank God for good health insurance.

But living with a spinal cord injury as severe as mine for almost 36 years, seeing doctors is a necessary evil if you want to stay healthy. The great majority of the time the news I receive from my physicians is good, but on occasion it’s not that great.

Like this past week, I received a call from my urologist. He wanted to explain to me the results of my recent kidney analysis. The news wasn’t that great. As a result, another visit to see him come this Thursday. That will be two visits in two weeks.

And of course I also need to see my cardiologist within the next couple of weeks. I visit her once a month. Have to make sure the ticker is still operating properly.

They’ve drawn blood from me so many times my veins refuse to release any more blood to them, at least without a good fight. At my last appointment, upon seeing me the phlebotomist stated, “better call Virginia.” I guess Virginia is the best vampire in that facility.

I’ve had so many x-rays I’m surprised I don’t glow in the dark.

Regardless, these ventures, although they’re sometimes annoying and really cramp my lifestyle, I follow through with because I want to stay alive and healthy, even if the news isn’t always good. Plus, I do want to enjoy my retirement someday.

One down, 15 to go.

Today we began the second week of the Spring semester at Arizona State University. One week down, 15 more to go.

The beginning of each semester is always a very busy time for all of us who work at the Disability Resource Center. There are new students to become familiar with along with all of the students returning from previous semesters.

It’s particularly busy this time of the semester simply because all of the students need to arrange whatever accommodations they may need. It’s very likely that your entire day is scheduled with back-to-back appointments with students every half hour. By the end of the day you’re exhausted, just want to go home, have something to eat and relax for a while. Then you repeat that same scenario the every day for the first two weeks at least.

We’re very fortunate in our office to have a staff that is not only excellent at what they do but are also dedicated to the extent that they thrive off of this seemingly craziness. It’s what our careers are all about and it’s probably the most rewarding time of year from a personal standpoint. A close second is commencement.

Pondering my mortality.

A California man was executed today. Strange thing is, it hardly made the news at all. Usually these events are high-profile in the news. A brief article online was all I saw and by midmorning the article was buried within the MSNBC web page, pretty much unnoticeable. Go figure! Did this individual's life have no worth?

Supposedly the individual was the oldest person ever to be executed. He was also blind, had diabetes, used a wheelchair for his mobility and had other health complications. I wonder if his physical conditions had any effect on the governors refusal to overturn the execution.

Ironically, also in today's news, the Supreme Court of the State of Oregon upheld a ruling legalizing physicians assisted suicide. A topic that brings about emotional debate, not only within our society in general but even more so within the disabled community.

These two incidences got me thinking about my own mortality and inevitable death. I always wonder how people will respond to the news of my death. Will they care? How many people will attend the services? Will they miss me? How long will I be remembered? Why I ponder these thoughts, I can't specifically explain.

Whenever my time comes, I hope those who care about me stay away from commenting on how I am no longer "confined to my chair." I've been to numerous funerals of individuals with severe disabilities or illnesses and such comments seem to be the common mantra. "They're free from their suffering," "free from their chair" or whatever. Gag me with a spoon!

To me such statements trivialize the true value of living a productive life regardless of having a severe disability or illness. Like my life was so terrible. Such a hardship. I am now "better off." Those types of comments are borderline insulting. Luckily I won't be around hear any of them.

All I know is that I do have strong feelings toward both of the issues that were briefly mentioned in the news today.

In regard to the execution in California, a person's life is the one thing no one has a right to mess with. By executing a convicted prisoner (who may have committed murder), we as a society are, in reality, killing someone, and thus no better than the individual executed. I couldn't live with myself if I were the person injecting the lethal drug, initiating the electrical current or responsible for whatever means of execution that is used.

As far as assisted suicide, if a person wants to die, that's their right. And if they are incapacitated to the extent that they may need some assistance, then it's best that the assistance be provided by a physician. Someone who can provide the service in the safest and most comfortable way.

I know there are many people that would probably disagree with my views, but so be it.