“Give Me Your Tired, Your Poor, Your Huddled Masses Yearning To Breathe Free”
To whom it concerns,
I believe that the world is stacked up against disabled Americans. Someone argue that the rights of minorities have gotten better in the last 10 or 20 years, and maybe they have, but they’re still not good. There was a documentary created with the intent to expose the mistreatment of disabled people some decades ago. If I were alive 40 or 50 years ago, I might be chained to a bed sitting in my own urine and praying to God that the orderly would at some point be around to feed me expired oatmeal. I hope they would not take advantage of me as I would be too drugged up to realize it. This was a fate worse than death for a lot of people and it should never have been.
Sometimes it crosses my mind that I have been blessed to not have to endure such a fate and I wonder why others have. I don’t quite understand why disabled Americans are still suffering. Today, I received notice that my case is up for review by the same people who neglected to bring pens to our meeting or can’t seem to remember what school I went to or what year I was born. They’ve taken several different intakes on me during the course of our 1 year together.
Americans should be entitled to getting the help they need regardless of what it is. I believe that I was treated unfairly because I did my part; I showed up to every appointment, I was polite, I was engaged and asked questions. And on the best of days, I was treated very rudely and I was treated as if my problems weren’t important. The last time that I saw my “caseworker” was in June of this year.
Due to the lackluster tenant to my case worker, I felt compelled to bring a few things to my appointment. The first thing I brought was a couple different styles of pen so that he would have no excuse for not having a pen. The second thing was a book to read in case he decided to take lunch at 3 in the afternoon. The third thing I brought was a witness to the meeting. The caseworker stepped up his game that day.
I am currently a writing student at Southern New Hampshire University and I intend to be a counselor. I want to show someone that I do understand their pain instead of just saying I’m frustrated. I think that the most important thing I can do is help someone who needs me. The very least I can do is make something important out of all of this and make someone else’s life a little bit better.
I’ve been through many hardships in my life that affect me both physically and mentally. I have had multiple surgeries done on my spine and my lower body. My earliest memory is of a very bright white light shining down my face, as a rather clumsy nurse was hunting for a vein to put an IV in. For a 3 year old that is traumatic, but it was the least of my problems. For many years before being able to take control of my own medical wants and needs, I had multiple surgeries. There were many times that my bones were broken and reset by doctors in an attempt to correct some of my physical defects. I was in high school before I enjoyed a proper break from school. I would spend the bulk of my holidays with a cast on my legs, and I would have no choice but to flip through TV channels all summer, while I peed in a bedpan waiting for another person to bathe me.
I did come up with a positive out of all of this. I actually developed a love of reading because I had nothing else to do during these long periods of being bedridden. As a last-ditch effort to give me a normal childhood, I was put on medication when I was a teenager. My doctor did little to no research before prescribing this drug to me; if he did, he would have realized that it was bad for brain health. Some of the side effects included seizures, tiredness, and depression. For my teen years, I bounced from the therapist and my mother took me to many doctors appointments trying to figure out why I couldn’t keep food down. The truth is, I wanted to kill myself and I didn’t know how to do it. When I finally came clean and told the social worker at school what I was going to do, she told me to go find psychotherapeutic drugs, and even accuse my parents of not taking care of me properly.
In desperation, my family and I reached out to another doctor. The doctor and the therapist on staff gave me 3 treatment options. The first was to break all the bones in my lower extremities, restart them and put me in a large metal frame around my lower body so I couldn’t move. The other option they offered is a Stinger with a medication that made me want to kill myself and be aggressive and violent towards others. The third was electroshock therapy, end high levels of muscle killing toxins. I still have that done every 4 months and it’s been almost a decade.
Paste shots, at the very least cause bleeding, and it causes me to vomit profusely. The procedure burns for several weeks after the injections and every time I have to get this done, the doctors have to sign a consent form and remind me that the thick toxic sludge in those needles could kill me. Stop and think about that for a minute. People go through these things to improve their quality of life. These things would kill you slowly, they would not kill you in a matter of minutes or days, but in a matter of months. Do you really think that someone would go through this and risk dying slowly unless they had to? Do you really believe that people do this stuff just because?
As horrible as this sounds, I wish that everyone in these professions could get very sick and very scared for just a little while, before they can decide if another person is worthy of help, treatment, help paying medical bills, or even the ability to work or live independently. Maybe if this person suffered long enough, the way that we as disabled American live, maybe they would start to give a shit about other people’s well being.
I’m wondering if people think we deserve to be cast aside like garbage, because that’s essentially what we’re getting. No one helps anyone else, it’s a dog-eat-dog world, and if only are we hurting for jobs, psychotherapy, and other things that we might need. Now Congress wants to take away a lot of the disability benefits, which means that people will almost certainly have to deal with other stresses on top of their physical pain suffering and recovery. They will have to deal with the stress of not being sure if they will be able to pay for the things they need, potentially not being sure of where their next meal is coming from.
My grandmother raised five children essentially by herself, she worked as a librarian and cleaned the local elementary school, the youngest of her five children was very sick she had to take care of him. His medical bills were costly, and he was in constant pain. My grandmother did everything she could to make sure that her children and her mother, who was living with her, were able to have the things that they were in need of. It is because of my grandmother that I keep on this path and I know that I can do whatever I need to do.
How many people are going to have to suffer with immense pain and fear every day before somebody with some authority understands, and actually wants to help? I want you to know that I’m not trying to accuse anyone, I’m just trying to spread some awareness to someone else who might need it. This isn’t written in miles, this is written with the intent of educating people who don’t live life like I am forced to.
Growing up, I heard many different things. People would tell me that I was being punished by God, that somehow I had done something wrong in my infancy and I was being punished. I’ve also heard the argument that I’m too lazy, and then I will somehow someday be able to walk as if by magic, despite the severity of my brain injury. This isn’t something you can wish away, and I believe that this is something that happened to me so that I could do something good for the people who are suffering. This is my chance.
Please understand that someone out there cares and that someone is me. If you ever need someone to talk, I’m here to listen.
A frustrated, and yet warm-hearted citizen
Keely Christine Messino