It's the Health Care, Stupid.

I admire many things about Welfare Mum. The thing I admire most is that she is upfront and real about her financial situation. I think it is brave of her to do that, because she could expose herself to a lot of judgment and negativity. But I think it is important for her to tell her story like it is because she can blow through some people's stereotypes about welfare mothers.

Well, now it's my turn. I'm on me the welfare. Well, technically, I receive Social Security Disability Insurance. This is the disability insurance that you pay FICA for. I also get paid for working for D. I get paid about $9/hr. for 35 hours a week give or take of CNA care. I make just enough (or just not enough) to stay on SSDI. (Ironically, I still pay FICA and taxes through this salary and SSDI) There is one reason right now that I stay on SSDI, health insurance. I get Medicare because I am on SSDI. With my salary and my SSDI check, I have just enough income to be just slightly above the poverty level for a family of 3, which is around $16,000 a year.

I don't like that I am on disability. I never thought that this would be me. I always thought that I could work. I still think I can work. In fact, I think most everyone can work at something. But the fact that I don't like being on disability is not the same as feeling guilty about it or that it is entirely my fault. I've broken no laws, here. I am just a product of the system that I live in in this country. I try to do what I can advocacy and voting wise to change things.

Of course, when I say that I'm a product of the system I live in, I don't mean to imply that I've been this perfect employee with all her shit together, the most amazing deaf/blind person in the country who has an answer for every problem related to my disability. I have not been a perfect employee and I don't have all the answers regarding accommodating my disability. What I mean to say is that despite the fact that I've worked to get through school, accommodate my disability, and do everything possible to make myself employable, one of three things has happened:

1. I was not given a chance to try a job. Employers were put off by my disability and did not want to make accommodations.
2. I sub-performed. This is the hardest for me to admit. There are jobs where I have been slower, missed information, made mistakes. Sometimes I've been in a job where at the beginning I was great because I had all my accommodations in place and then, when my vision/hearing got worse or the job or technology changed, my accommodations no longer worked.
3. Health care got in the way. There are certain jobs I could probably do but either they did not provide health insurance or I could not perform on the job long term due to health reasons.

I feel like I have followed all the rules. I've done my best. I went to school, I went to vocational rehabilitation (several times) I did everything you are supposed to do at job interviews and resumes, etc. I have volunteered as a way to prove my abilities for more hours than are really fair to mention. For a while, it was really the in thing to do as a disabled person to volunteer for paying jobs to prove your worth and then supposedly they would hire you. Guess what? people found that in most cases it didn't work. Employers still kept disabled employees from the "meat" of the job and just used them for hours of free skut work. Now it has become unpopular for people with disabilities to volunteer. Now you are supposed to say, I am worth this salary, damn it! Hire me. But anyway, there is still a 70% unemployment rate among disabled people. Most of whom want to work.

In a perfect world--scratch that--in a world that I think we could make happen if we wanted to, most all disabled people could contribute to society in some way. (And pay at least some taxes, ahem.) People could work part-time if that is all their health would allow and still maintain their health insurance. People could carve out or share a job so that they could do the things they excel at rather than having some parts of the job limit them from working at all. The way it is now, you have to show up to a job interview and be able to match their job description. But what if in certain cases, they matched a job description to you? When I worked at KU as a graduate research assistant in the department of special education, I was given specific duties that allowed me to work a certain number of hours and rarely run into a problem that my disability would limit me. For example, I would do lit searches through the computer, and someone else would do lit searches through the library/microfilm. Then we would write out notes on the computer, and take turns collecting each other's notes and writing out lit reviews.  We had a woman with cognitive disabilities who would go around and do paper shredding/sorting for the whole building. So none of the receptionists ever had to bother with it. There are a million ways that disabled people could work. And work at competitive employment in ways that would use their strengths. But the HR world is not set up that way.

Although the Americans with Disabilities Act prohibits discrimination based on disability and requires that employers provide reasonable accommodations, many employers have found ways to get around this. The law says that people with disabilities have to be able to perform "essential functions" of the job with or without reasonable accommodations. So some employers have set up certain disqualifying essential functions. For example, a job description for a nurse might say something like, "applicant must be able to hear 40dB alarms from a distance of 300 feet." Well, this sounds essential, right? You want your nurse to be able to hear when your heart monitor flatlines, no? But what if the nurse was able to attach a signaling system device to the heart monitor? What if, when a heart monitor went off, a pager vibrated on her person? Then, she would be able to acknowledge that heart monitor and respond from, really, anywhere in the building. Thus making her more efficient than a hearing nurse. So the REAL essential function in that line is something like, "applicant must be able to monitor and respond to alarms and alerts that affect patients health." But in doing it the way that they do, employers discriminate against disabled people by creating an essential function of your body, not an outcome of the job.

But back to me and welfare. I could tell you a long history of my attempts at employment and my successes and failures at employment. Perhaps I will as time goes on. What it comes down to is problems with the aforementioned three items over and over and over again. And when I got pregnant and lost my previous job at about the same time, I got panicked and I got TIRED. Just tired in an emotional way that I have never been before. Tired of the panic, tired of the trying to convince people and convince people to give me a chance. Tired of never being able to earn my dues; everyday it was like I started from scratch and had to prove myself all over again. Nothing I did the day, week, month, year before mattered. I could still screw up today. Tired of everyday, trying to live up to an expectation of being fully sighted and fully hearing that I will never live up to. Tired of busting my brains trying to accommodate and figure out answers for the things I couldn't do as well when no one else was interested in my solutions. Tired, mostly, of the uncertainty. Never knowing if I was going to have health insurance from one month to the next. Never knowing if I was doing as well as my colleagues or if I was being given a free ride. Never knowing if I could cut it.

I lost my job for a number of reasons. I had worked there for five years and have had between one and five or so hospitalizations for mostly kidney stuff every year. D's health was constantly getting in the way of my job and I was missing work for him. It's one of those things where I was constantly in the position of, "gee, should I stay here and save his life and get him to the hospital or should I go to work and sit in a meeting that has nothing to do with me?" Then, my mother was diagnosed with terminal brain cancer. And my hearing and vision HAD worsened and I did not have the proper computer technology to keep up. I took way to long to complete things. Then, the last straw was that my whole department disintegrated and the top people moved to a different university and took only a few of the research staff with them. I was not chosen to go along. I don't feel bad about being let go...I mean, I'm not mad at them, I don't blame them. I blame me a bit, but then I really don't know what I could have done differently when I think back on it.

So all this happened, I became pregnant, and I got tired. I applied for SSDI and was quickly accepted. Now, you can criticize me for getting pregnant when my job was at such an uncertain level, and that would be a fair criticism. But being a parent was a lifelong dream and my opportunities to fulfill it were becoming almost nil. Jobs and money may come and go, but parenting can only happen once (in my case.)

And I knew that I would be more secure, health care wise, money wise, and the kids would be more secure on SSDI than on trying to find work. I knew I needed a rest. Physically and mentally at that point, I was at a loss and could not seem to pick myself up and get myself in a state to prove to some employer that I was worthy of a chance. This was the kind of emotional drain and tiredness I'd never felt before. A hospital shrink of D's listened to me once when D was in the hospital and said I had what sounded like post traumatic stress syndrome. And I said, well, I guess the trauma is the slow, torturous, never-ending fingernails on chalkboard kind.

I remember sitting in the Social Security office and applying. It was one of the most miserable days of my life. My kidney hurt so much that I couldn't stay seated in the chair, I kept having to get up and stretch it out. My mother was extremely ill, the office was dark and dingy, and I had filled out pages and pages of paperwork and sent them in before hand but they had lost them, so what was supposed to be a ten minute interview turned into a two hour application process. And those people are always so accusatory. I remember the woman saying, "oh, you had a GOOD job, you made a REAL salary. You couldn't keep it up, huh?"

I was never worried about living on not very much money with the kids. Well, I shouldn't say NEVER. But I knew I could live around poverty level and give the kids everything they needed. (NOT wanted, but needed.) Being poor is not that hard, it is just being poor when every one around you isn't that is hard. And I am also well aware that I am not poor in the grand sense. I am extremely lucky to live in my father's very nice house for below market rent. ($600) I am extremely lucky to live in the United States where my kind of poor is really a misnomer. I am rich beyond measure compared to those that live elsewhere in the world. So that is not hard. I've lived much poorer than this. In college, I existed on around $400 a month quite adequately. Although when student teaching (and thus not working much) I did visit a soup kitchen a few times on some desperately hungry days. This is not that.

As far as the future goes, I'm getting over being tired. I'm getting rested and do think a lot about working again. My new reality is that childcare for young twins is more expensive than I ever imagined and I might have to wait until they are school-aged to really, really get going. But right now, to keep my health insurance, I might be able to do a bit of contract work at home.

And I want to say here, if you take anything from this...even if you think I"m a total loser for staying at home and being a welfare mom, take away this: Many, many disabled people could work if they were able to keep their medical insurance and other life-sustaining benefits while working. If we had universal health care, I would likely be working at least part-time right now. If D could keep his health care and home health services, he could be working right now. Many disabled people have extremely high health care costs and needs. With discrimination from employers who often do not want to hire someone because they fear it will make their premiums rise (and, truthfully, it might), and pre-existing conditions and super high costs keeping people from being able to qualify or purchase their own insurance, the only thing left for disabled people to do is to go on SSDI and medicare/medicaid. Here is the thing: you all are paying for us now, if we could go to work and keep our health care, we could at least pay something into the system. We might not break even with our expenses, but some of us would and all of us would make a dent in the costs. Sounds better than what you are paying for us, now, doesn't it?

It always interests me that it seems like the same people who resent the government for requiring that employers provide accommodations for the disabled are the same people who are against SSDI and state funded health care. So if we can't work, and we can't be on SSDI, I guess you want us dying in the streets? Oh, yeah, those are the same people who also don't like homeless people.

I think, that I can promise you, Joe Taxpayer, that although I am a product of this system right now as a SSDI recipient, I WILL keep trying to work, and I WILL keep trying to advocate for legislation that will help people with disabilities go to work. I will not do this at the expense of my health nor my family's health. And this is the BEST I can do.

Comments

[phoenix]

I was a little confused by this because aren't you working now, as D's PCA?

Personally, I agree with you about how the system works and the position it puts people in. This Joe Taxpayer has no problem with you being on SSDI and receiving Medicare.

[cubbiegirl]

Brave wonderful post. I think you are doing an excellent job.

[Emmie]

What a valuable post. But what a shame that you would ever feel a need to write it or defend your choices, or lack of choices. There is a serious dearth of compassion in our society right now, and combined with a lack of knowledge and common sense, the results can be tragic. Thank you for sharing your reality with us.

[shannon]

I think having children is a basic human right and should not be judged in relationship to a parent's ability to "support" them.

I think it is in society's interest that children be supported materially and emotionally, but not necessarily by the same person/people.

But I am a radical pinko freak, so what do I know?