Rights On Paper Alone Are Utterly Useless

Time flies! I cannot believe it’s been over four years since I created this blog, made one entry and forgot about it, until recently.

The blog entry below is from October 11, 2013, while I was living in a shelter for disabled victims of abuse in New York City after literally escaping from a nursing home I had been dumped into (in Maine) at 41 years of age.

Since then, I’ve had a brush with death, made peace with my estranged mother, lost her to cancer and moved to the San Francisco Bay Area (where I recently had another close encounter with death).

The incredibly overrated Bay Area is one of the biggest disappointments I’ve ever experienced. I refer to it as The Gentrification-On-Steroids Area.

Rights on paper alone make for great public relations, but they are utterly useless.

So, to go back to the beginning of this journey: I escaped from a nursing home in the middle of the night back in September of 2012, with nothing but two boxes of medical supplies and some clothes, and made my way to New York City (with the help of a couple of very kind friends), nearly died from a bone infection while in New York, moved to the Bay Area (where I recently spent 5 days in the ICU with a relentless respiratory infection), and here I am, in what was supposed to be the Promised Land for The Disabled, feeling shattered with hopelessness. Needless to say, this is not what I had envisioned…

Wait lists for affordable housing and personalized attendant care are so long I have become convinced that I will likely die waiting for these basic necessities.

So, I thought, why not renew my efforts to reach out and educate my fellow Americans, especially those naive enough to call this “the greatest country in the world”, about the plight of the disabled community? It never ceases to amaze me how little people know about what we have to go through simply for what most people take for granted. Unless you yourself are disabled or have disabled relatives or close friends, you probably have no idea about the incredibly challenging, sometimes downright hellish, conditions we are made to endure.

I can almost hear a conservative and/or libertarian minded person reading this and thinking “what an entitled little thing that Shannon is! What makes her believe that we should provide for her needs?” And my reply to that person would be “I did NOT choose to become disabled. I was working full-time, having landed my dream job after putting myself through dental school by waitressing. I was contributing to the system and living a very active life; until the day I dove into a swimming pool and broke my neck. As a civilized nation, we should take care of those who cannot take care of themselves: namely children, the elderly and the disabled. As a taxpayer, I never complained about my tax dollars going to schools even though I had no children. It’s what civilized societies do.”

And while that’s a long answer, I might have to add “do you have any idea how much this country spends on what it calls defense (military) spending, a huge chunk of which is absolutely wasteful and unnecessary? If a SLIVER–a tiny sliver–of those resources were allocated to taking care of those in need we would have a much more fair and just society. We might actually be able to earn the right to call ourselves ‘the greatest nation on the planet’.”

But what do I know? I only speak from, you know, personal experience.

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Don’t Call Us “Freeloaders”.

My name is Shannon Nelson. I am an auntie, a friend, a sister, a former dental assistant, a student of life, and I also happen to be a quadriplegic.

I decided to create this blog to do my part in educating my fellow Americans on the plight of disabled individuals in this country.
I am neither a “radical” nor a “freeloader”. I am simply a human being who after breaking her neck in a swimming pool accident, became paralyzed from the chest down. While I enjoy engaging in political and philosophical debates, I choose not to get caught up in useless finger-pointing.

Before breaking my neck and becoming a quadriplegic, I was working as a dental assistant. I had health insurance which I paid for with my dedicated work. I did everything I was supposed to do: I put myself through dental school, got a full-time job, paid taxes and contributed to the system. Then everything changed on June 4, 1995, which is the day I broke my neck.

Over the years, I’ve struggled not only with the limitations of being in a wheelchair, but also with the consequences of the limited resources allocated for the care of the disabled in our country. I am completely paralyzed from the chest down and need assistance on a 24/7 basis, but up until last year (while living in Maine) I only received an average of 12 hours of paid assistance a day. I had to rely on family and friends to volunteer their help during the remaining time.

My caregivers were paid low wages and received little to no benefits. Thus, it was nearly impossible for me to find reliable help on a consistent basis. I wish I could find the words to describe the feelings of hopelessness I had whenever yet another of my caregivers left me for a better paying job. Like me, countless other disabled individuals face this disheartening situation on a regular basis. As a result, we often burden our families to the breaking point.

After approximately 17 years of relying on family and friends, it became very clear to me that I had become a burden to them all; and no, I don’t say this with anger or resentment. I understand. It was never their place to take care of me without any financial compensation to begin with. But at 41 years of age, I had no options left other than being sent to a nursing home, which wouldn’t be so bad if nursing homes were equipped or staffed to take proper care of severely disabled residents. One of my best friends, also a quadriplegic, died in a nursing home due to complications caused by a pressure sore. Chip was only 47.

Death itself does not scare me. I happen to believe that life never ends. However, the prospect of suffering a slow, painful death due to inadequate care, does scare me. I could go into details about countless horror stories of neglect, but I will spare you.

Needless to say, I did not choose to become paralyzed; therefore, I don’t understand why I, along with millions of other disabled Americans, are treated as second-class citizens. As far as I’m concerned, the greatness of a nation should be judged by how it treats its most vulnerable citizens.

I often felt like the governor of the State where I previously lived saw disability as optional. He actually proposed budget cuts that would have left me and thousands of other disabled Mainers living on the streets. Fortunately, he was unable to carry out his atrocious plan.

Tired of a hopeless situation, last Fall I did something that I never thought I could do: took a handicap accessible cab to the train station and left everything behind for a life that didn’t necessarily offer or guarantee a more dignified existence for me in New York. And here I am, still going through the system, still feeling like a burden but in a different way. Without getting into details, the type of abuse I suffered in Maine was a product of the frustration of having to take care of me without any financial compensation; while I no longer have to endure that type of abuse here in New York, I do feel the heavy weight of an unjust system that treats its disabled as a burden, and makes a point of reminding us of our perceived “uselessness” by depriving us of opportunities.

I am currently residing at a facility for disabled adults (while I await handicap accessible housing), and the general feeling in this place is one of hopelessness. I refuse to let despair get the best of me. I will continue to fight like hell even if I have to die in the process (I am currently facing some serious health challenges.)

Does it make any sense that corporations that make billions of dollars in profit are given obscenely large tax breaks while disabled citizens like myself suffer a nightmarish existence due to the limited resources allocated to our care? That is, in my opinion, morally unacceptable in a civilized society.

No, I am NOT an anti-capitalist or a “radical leftist”. I believe in responsible capitalism. But I ask you to consider this: The average CEO in the United States makes between 300 to 400 times what the average worker makes. In addition to their regular salary, they also receive millions of dollars in bonuses. Millions on top of millions. Corporations that make billions of dollars in profit receive taxpayer money in the form of subsidies and tax breaks. Yes, taxpayer money, your hard-earned dollars, going into the bank accounts of the obscenely wealthy! On the other hand, 1 in 5 children live in poverty, and most disabled Americans do not receive a sufficient amount of care to live a dignified life. Need I say more? Is this acceptable to you? If you believe so, that’s fine. Needless to say, you are entitled to your opinion; but while you let our most vulnerable citizens bear the brunt of an unjust system, please do not call this “the greatest country in the world”.

I have a healthy level of love, appreciation and respect for my country. And precisely because I love it, I want it to be better. I would like the United States to be seen as a nation in which the less fortunate of society are treated with the dignity and respect that all people deserve. We need to practice what we preach.