Since I've been confused by some of the comments to the post below, and even more so by the emails I've gotten to what I thought was a nice, supportive post to all people with disabilities having to deal with the craptastic current benefits system, I'm going to post a few addendums.
1. You are either the type of person who believes that most people are inherently bad and lazy and take advantage whenever they can and need lots of laws and strict enforcement in order to drive people in line, or you are the type of person who believes that most people are inherently good and will do the right thing on their own for the sake of doing the right thing.
I believe that most people will do the right thing if they are given the necessary resources and opportunity to do so. This is actually not so much because I'm all bunnies and sunshine and cumbaya...it is based on behavioral research by social scientists and behavioral psychologists. Positive reinforcement has been shown over and over again to work better than punishment. Democracy has been shown to work better than dictatorships. Human resource studies have found that when employees are given such benefits as flexible hours, on-site daycare, and job sharing, and other such worker friendly policies that production goes up and absenteeism and things like shoplifting go down. Prisons that provide educational opportunities and programs that reward prisoners for good behavior and treat the prisoners as people in a rehabilitation program vs. a punitive prison cell have better results when prisoners are released and less repeat offenders.
I know there are some assholes out there who will cry disability just so they don't have to work, but it comes down to whether it is more important to punish all the innocent to get the guilty, or risk a few guilty getting away with it in order to serve the innocent justly. My feeling is that I'd rather not punish the innocent. I sort of figure that Karma will get the others in its own way. They have to live with themselves and why should I worry about it?
Besides, if we took away the imaginary line called disability, provided health care for all people, and put the responsibility to tell employers what employees need to increase their productivity on the employees themselves...there would be nothing to cheat and apply for. You go to work, you tell the boss you need A.B.C. to be more productive, and consequently, your productivity should go up. Even if you never get to the point of being as productive as the average worker, you are more productive than if you spend your time applying for and appealing for a lifetime of disability benefits. And in the end, getting more people to work at least some part of the time, rather than spending endless amounts of money to catch the cheaters is a better use of resources.
2. I do have a basic belief that everyone should try to contribute to society in some way. This doesn't mean that everyone has to "work" in the traditional way we think of work in this country, all the time at every season of their lives. My main job now is to be a mom. I'm working some but this is my season of not doing too much traditional work. Incidentally, this has more to do with my impairment of not having affordable child care than of my impairment of being deafblind. I feel like I am contributing to society in that way by hopefully raising two great individuals. Later, they won't need me so much and I will contribute in another way. It is also possible for me to imagine that we could decide as a society that a person who has been disabled in combat or in the line of duty as a firefighter or police worker has contributed enough to society. But to me, this means like we should fund fire and police bureaus with enough money to give disabled workers a pension and a health plan, not just cast them out to apply for benefits hell. But if this disabled police officer doesn't feel like, at 25, he is done with his career, he shouldn't have to make that choice just to get medical care. Also, I think that retired people have the right to say, "look, I worked for 45 years, now I'm going to take it easy."
Shannon is right when she says in the comments that I'm talking about choice here. People with disabilities in this country are devalued by the system taking these choices away and making the person with a disability have to constantly prove his worthlessness to society. Half the time you are trying to prove you can do something just to turn around and have to prove to someone else that you can't do it just to get by. To give you an example of the importance of choice, look at my mother, for example. My mother worked for 30 years, paying health insurance premiums and rarely using the health care system at all. Then, she lost her job. She had a brain tumor that she was unaware of until almost a year later that may have affected her losing her job, but there is no way to prove it. She got a transitional health insurance policy with a very low lifetime cap, thinking she would be working soon. Then, she was diagnosed with brain cancer. I told her to apply for disability right away, because I knew that she would use up her cap very soon, likely not be able to work, and be uninsured. At least with disability, she would have been insured through medicare in two years. It turned out, she did not live that long...only ten months after diagnosis. However, the cash benefits she received during that time were very helpful, as was the piece of mind that she had another health insurance option in the future.
So, could my mom have worked during her disability? Yes. She had the skills and functionality to do productive work, although not at the same level she was at before her illness. Does that mean she should have been required to go out and work at McDonald's? No. She was concentrating on fighting her cancer and having chemo and radiation treatments and when it became clear that she was terminal, she concentrated on trying to enjoy the end of her life.
Now, I think it is conceivable that a person who has cancer and is going through treatments might want to work. They might really enjoy their job and the distraction it causes and the social outlet and normalcy it provides. Maybe they would have to go down to part-time or have flexible hours or need frequent breaks. So, I think, instead of having to prove you can't do anything when you have an impairment in order to get income and health care, you should be able to make a choice and get accommodated.
This is what I'm saying when I say 'Everyone can work." It is about respecting people's value as worthwhile people that contribute to society rather than having to spend your life and energies proving that you are worthless and can do nothing, just to help people justify giving you health care and enough income to have food and shelter even though you aren't doing a 9 to 5. It also perpetuates the image that people with disabilities can't contribute and this just puts us in a vicious cycle that we will never get out of.
3. People freak out when I talk about accommodating the disabled and what employers may be required to do under the ADA. I get the usual alarmist comments like, "Does that mean a blind person can sue an employer for not hiring him to be a truck driver!!???" Does that mean an employer has to spend millions of dollars on a NASA invented robot so that a quadriplegic can do brain surgery???" Oh, my GOD, Lisa! You are talking crazy talk!
Well, first of all, the ADA required that people be otherwise qualified to do the essential functions of the job and the accommodations have to be reasonable. There is some gray area here of course, and that is supposed to be why we have the judicial system.
But here is what I don't get. Why do we trust nondisabled people to find the niche that best suits their strengths and plays down their weaknesses in their vocation but we don't trust the disabled to do the same? Back to my above assumption that most people want to do the right thing...Dude, I don't WANT to be a truck driver. Why? Because I would SUCK at it! I would never be able to excel, and my talents would be wasted. Not to mention that little pesky problem I'd probably have of accidentally killing people. Disabled people, like everyone else, try to go into careers that they can do successfully. Did you avoid all math in college because you suck at it? That probably means you chose not to be a math teacher or an accountant, right? You chose to be a social worker or something because you are good at organizing and getting people and resources together.
So, I don't think we are going to have mass mobs of disabled people going into jobs that would require completely unreasonable accommodations. People like to be good at what they do and like to play off their strengths. Now, the fact that a disabled person knows that he is good at Career X and has proved himself to be good at career X but an employer doesn't think a person with that disability can do career X is just basic discrimination and prejudice which is what the ADA is trying to fight.
Okay, is that better? I know this doesn't quite explain all the answers for how my system could work...but that is for another post. Bottom line is that a) health care needs to be kicked out of the workplace/disability/benefits menage a trois; b) if you want more people off disability and into the workforce, you've got to give them somewhere to work and enforce the laws that will allow them to work there; c) impairments are dynamic and changing and how people adjust to them are also changing so it should be easier to move between work and disability and back to work and take some chances and try a few things out first. You shouldn't have to risk loosing everything to do it; and d) there are better uses for our tax dollars for this population than to spend millions trying to catch the cheaters at the expense of everyone involved.
I agree with you. From what I've seen, people on disability are not living the good life but are making necessary compromises to survive and get their medical and housing needs met. It is way beyond time for health insurance to be separated from employment--that would be a start in accomplishing what needs to be done.
Posted by: rossecorp | April 18, 2006 at 05:12 AM
I'm only nondiabled if I work at a job with health insurance. As I understand it, if I was on disability there is no prescription coverage. My drugs cost $1500 a month. (If they should cost that much is another subject.) So, if at some point I get sicker, I have to try desperately to hang on to insured work. It's stressful! And no, I can't get benefits through my husband and keep living in the same city because it's too expensive, and I'm not sure I could even buy health insurance at this point.
However it gets done, people should have health insurance. People should not die or become disabled from treatable conditions because they cannot afford the treatment.
Posted by: cherylc | April 18, 2006 at 04:33 PM
Lisa, you are one sensible chick.
Posted by: shannon | April 19, 2006 at 08:27 PM