I read a lot, and by a lot, I really mean a lot. One book that I am very excited to get into is Lock In by John Scalzi.
This is a sci fi book that deals prominently with disability. And probably contains some spoilers even though I am not far into the book yet.
Cover taken from the Amazon page where this book is sold (see link above)
The plot takes place in a world where a flu like epidemic has caused certain people to suffer from locked in syndrome where they are conscious but they are a prisoner in their own bodies. As some of you probably know this is a real thing that has happened to some people, not neccesarrily the flu portion, but the locked in portion.
In this world there are people that caught the illness but instead of being locked in they became able to allow their minds to be shared with the people that are locked in and so offer their services in that way. The main plot deals with a murder that has happened by a person who was allowing themselves to be controlled by a person that is locked in (at least that's what I think anyway).
I am only 50 pages in and I've already seen some promising things about disability representation. I wonder how much invisible disability will factor in since some of the characters are able to put on a new body and so they would not physically show their disability as opposed to the people that use a robot like structure that makes their locked in status very visible.
There is also an overarching issue where the government feels they are spending too much money on the people that are locked in and the resulting cut in funding would leave countless people that are locked in with no way to support themselves and no hospital care. The reasoning being that, with all the "options" available to these people to interact with the public and hold down jobs that these people shouldn't be classified as disabled anymore so they should not get the support of the government.
I think that this is very poignant in relation to some of the things I've seen happen to disabled people. There are actual people out there that assume having things like handicapped parking, ramps, and special seating on public transit are privileges that are undeserved instead of a way to let people of varying abilities participate. That and the way that people that are on disability benefits are always living in fear of the government coming in to take away what meager living and healthcare they receive.
I've only gleaned this from the first 50 pages so I can't wait to see what they rest of the book holds in store!
In your quest to obtain the presidential election bid this year you have said some things that have made people feel you are out of touch with the everyday struggles of all but a small number of upper class citizens. I have largely agreed with these criticisms, but it wasn't until I thought about one specific thing you said that I really stood up and took offense.
You said something to the effect of 'if you need money you should go ask your parents for help'
Now, I'm sure you can spin this however you want, and that you intended it to mean money to help start a business, but when I applied the basic principle of asking my parents for money for help to my own situation I realized you have pretty much told me that my life is not valuable enough for my government to help keep me from dying.
You see, while I was busy working to pay my way though college, or at least to pay for what wasn't covered by a near full ride scholarship and student loans, working away to better myself and open avenues for a good future where I could be a success I was dying. I don't mean in the spiritual. starving my soul kind of dying because I was working towards a goal where I would be helping others for a living and that's where I feel success lies. No, I was fighting a war against myself, my own immune system was and still is waging an attack on every blood vessel in my body, from the large arteries to the small capillaries.
This is something you should be able to sympathize with as I understand your wife also suffers from an autoimmune disorder.
Completely unaware of what was going on inside me, I graduated college and began work teaching under privileged kids at a Title I public school.
Within a few months of working I was near dead.
I had attributed my symptoms first, to being at college, and environment where many people are not able to go to the doctors and germs are spread readily. Then I convinced myself that I was sick because I was teaching young children. By December my lungs were hemorrhaging, I could hardly walk, and the only reason my kidneys were not considered to be in failure was because the waste being dumped into my system had not yet appeared in my blood work, which came as a shock to my doctors.
This is how, at the age of 24, I was diagnosed with the rare disease Granulomatosis with Polyangiits formerly know as Wegener's Granulomatosis. A relative of Lupus, MS, asthma, Chrones Disease, and a mirade of other autoimmune disorders.
I managed to finish out the school year taking highly toxic medications everyday, but was, regrettably, not healthy enough to return after summer break. I was lucky in that I had been living with my parents while I saved money to find my own place and they continued to allow me to live under their roof while I spent all of my savings on monthly doctors visits, prescriptions, ER visits, and surgeries.
This was all while I was still on my parents' insurance.
Here is where I get to my reasoning that you have told me I should resign myself to die.
I will run out of insurance in the next few months. I was very lucky that President Obama's health care reform at least was able to let me stay insured until I was 26 years old. You know, the health care reform that was based on the model you created for Massachusetts; the one that would have given me a low cost government insurance option that I could afford had you not helped to block it?
At 26, in November, actually, the same month I will not be voting for you, I will become uninsured on top of being unemployed. I have tried Social Security but, funny thing, they say I am too young and too highly educated to be disabled so I have to wait another 12-16 months so that I may plead my case in front of a judge.
Until then, I get to figure out how to come up with $11,000 a year to pay for my life. This figure is only an estimate and does not include any surgeries, ER visits, antibiotics, hospital stays, x-rays, scans, and labwork that often tag every year for someone who is immunocompromised, is taking highly toxic medications daily, and has a mirade of other complications stemming from such.
My parents are currently helping me, they cannot afford to help me cover this sum, either. Unless you are willing to chip in and help Mr. Romney by coming up with better programs or become willing to put your money where your mouth is, I am stuck between a rock and a wall of knives. Left untreated, my disease has a life expectancy of five months or less once symptoms start showing. In this case, death is a painful process of going through multiple organ failures at the same time.
This is a reality that many, many citizens of the United States are facing right now.
Your thoughtless words lead me to believe that you are not just ignorant of the struggles faced by most Americans, you are dangerously out of touch. I need a leader who realizes very few people have the luxury of turning to a vast family fortune when money is needed. I need a leader who knows that, for most of us, one paycheck is standing between having a home and being put out on the street. One missed paycheck is all it would take to destroy a family and send people to their graves.
You are not that leader.
My life is not a privilege, it is a right and who are you to determine my worthiness based upon my family fortunes?
I'm not exactly sure if I should be posting about this, but I think it might help some people out there.
There are things that social security doesn't seem to understand about vasculitis. They don't seem to get that symptoms can flair up at any time, they don't seem to understand that vasculitis (this is all types included) have a mortality rate of up to 98% within two years, and they don't seem to understand that stress and illness increase the risk of symptoms reoccurring.
When a person is attempting to apply for social security in the US they have to list every medication that they take for their condition and why they take it. A while back my rheumatologist and I decided that, in order to deal with the mood changes and depression I had been having in reaction to my situation and the medications I am currently on, I would begin taking some anti-depressants.
This meant that when I applied for SS I had to put down that I am taking this new medication and that I am taking it for depression. I began taking this medication just before I got my first denial so I just added it to the list when I appealed.
It took them a couple of months to decide that if I was on an antidepressant why wasn't I seeing a psychologist for my depression? I must go see one. They paid for the appointment, and the psychologist explained to me that he was just going to do an interview and write a report for SS. What he says doesn't determine my approval or not, but that it helps SS weigh my options.
By this time, the medication was working, I already knew why I was depressed in the first place, and I was on my way to turning things around. I explained all this to the psychologist and we went on with the interview. I was a little concerned because I had lately been having some memory lapses that were bothering me, but the psychologist assured me that this was normal. Well, it's not normal for me. Something that he wouldn't know because he doesn't really know me.
This was my biggest problem with the interview. Sorry, but I don't think that a psychologist really has the ability to accurately determine the mental state of a person with just one interview. Maybe he thinks memory lapses in a 25 year old is normal, but it is not normal for me. I've never been the type to walk into a room and have no idea why, I've never had problems before with remembering words, or what I was talking about. Sometimes I've even forgotten who I was talking to while I was talking to a person. This isn't normal for me.
If SS is really concerned about deciding if a person does need a certain medication maybe they should try to get more than one appointment. My rheumatologist has seen me every month for over a year. She knows me. She knows what I want to do with my life, she knows how very not forthcoming I usually am about my problems, she has seen me in various moods. Bottom line, I trust her judgement on my mental state more so than a psychologist who only did a 15 minute interview.
Maybe it would be better for SS to do more than just take medical records. Maybe they should ask for statements from the physicians that work with the patient so that they can actually see why the decision to try for SS was made. They need to get a more complete image of the person.
I think what I'm really trying to get at in this post is that, we need to change the way that medicine and government treats patients with hard to diagnose diseases. The diseases that are considered "mysterious".
In my case I do not want to spend my life on SS, I have the drive to get back into work and goals that I want to achieve. Unfortunately, right now my doctors and I have decided that it is not the best idea for me to be back in the work force right now. Until I do go back, I do need some way to support myself. Medical bills have burned through the savings I made while I was working and at the end of the year I will be uninsured. With one visit to my rheumatologist costing me over $350 not including any tests they do I am not going to be able to afford any further health care.
As a person with a newly diagnosed, chronic and currently incurable disease I have had to change some of my perspectives and become more aware of certain issues that previously I probably would not have worried about before. Not many 24 year olds would ever really stop to think about the possibility that they might not be able to work and that they might have to rely on government assistance in order to get by.
Currently, I am still capable of working and I plan on staying that way as long as possible. But the realities of my situation are such that I will more than likely have to go on disability, it's no guarantee, but there is a high possibility that I will not be able to work full time or at all somewhere down the line. Of course, if things in the political arena don't settle down I might have to continue working longer than what my health will allow, either that or become completely dependent upon the kindness of my parents.
From what I have been told by many of my new acquaintances from the Vasculitis Foundation (many of which rely on Social Security and Disability to live) and from what my own snooping about on the intrawebs has found is that, in order to appease the Republican party President Obama put Social Security cuts on the table in order to have a way to bargain for a raise in the debt ceiling.
In all honesty, he probably explains things better than I and *gasp* he's actually in Washington!
If these cuts were to go through, many of these people will lose any way they had to support themselves. For me, this means that if the time comes where I can no longer work due to my Wegner's then I will not have the option of Social Security or Disability to fall back on.
It saddens me that a program that our citizens pay into so that they can have something, even if it is only a little, to rely on in a time of crisis, is one of the only ways that our President has to bargain with the Republicans. This is not the first time that cuts on Social Security have been used as a bargaining tool and it is always being used in cases where the Republicans are unwillling to work with a Democratic president. I hate the fact that these big time politicians use their citizens' lives, yes, cutting this program would be paramount to executing the people that need it, so flippantly.
For once, can these so called leaders in our country look out for the benefit of the ENTIRE country, not just the richest? Can we not all see that we need to raise the debt ceiling? Can we all not see that it is possible to accomplish this by cutting spending in crap programs? Here's an idea, why don't we close some of the tax loopholes that the richest people in this country take advantage of? Why don't we lower the salaries of the big wigs up in Washington? That would help us get rid of some of our deficit. But no. We have to squeeze the little guy, those people that can't do for themselves, those that need the help the most.
Each time that cuts in Social Security are brought up, it is met with great resistance from the public. One way that you can help resist is by writing your congressman, or senator, or representative. You can also sign this petition http://pol.moveon.org/bad_debt_deal/?rc=bad_debt_deal_letter.fb.v2.g1
Maybe we need to do more than that. Maybe we need to use our powers as the people and vote the whole bunch out. Let's get some people in there who actually want to see life in our country get better for everyone. Remember, the government should fear the power of its public, not the other way around.
In other news, the VF is doing a survey to help improve its website http://vf-survey-july-2011.questionpro.com/ once you complete this survey you can enter to win a years membership to the Vasculitis Foundation or a t-shirt, and who doesn't like t-shirts? If you're a person with one of the 15 types of Vasculitis, a family member or friend of a person, or maybe just that really nosy co-worker or neighbor that looks up odd conditions that their cubicle partner or house next-door-er suffers from. You could even be that person who looks up odd diseases on the internet and then decides that they have them. But the point is, if you've been to the site, take 10-15 minutes to help them improve it.
