Get a job.

So, you all voted for bailing. You may be right. My gut says something has to change and this arrangement where I'm constantly made to feel like an amoeba sucking off his highness's royal castle is not going to be good for anyone involved.

However, running down the street right away to attach myself financially to D by sharing an apartment isn't probably the answer either. At least right at this second. I'm going to be honest with you here. And this is hard for me to say. I don't know how long D is going to live. Or if he does live, how long he will be able to live independently in his own home. Now don't get me wrong, he is not dying or anything. And who knows? I could be completely wrong. I have not given up hope. But my expectations for D and I and our lives have changed drastically since I've known him.

When we first met, he was a lot like me. A high achieving, hard-working disabled guy trying to play by the nondisabled rules and trying to "PASS" in the world as much as possible. Then, I thought he would graduate from college, maybe even go on to graduate school, and become at least a middle income engineer. I figured we'd buy a totally accessible house. He'd go to work, I'd go to work. We'd have kids (I thought maybe through ICSI/IVF but also considered DI and/or adoption at the time.) We'd have made it. No SSDI, no Medicare. We've live perhaps a modest but comfortable life. We'd easily have group health through our employer. Perhaps as a perk, like when they have perks for high tech guys where they do their dry cleaning and cut their hair on the job, D could negotiate some attendant services. We'd have made it. What every disabled person wants. Not an extraordinary life. Just an ordinary one.

At some point after he moved from going to OSU to working on his health more (The first pressure sore issue) my expectations changed. I thought, well, we won't get married. He needs to stay on Medicare and TriCare at all costs. He may never work full-time, but maybe a part-time job with flexible hours. We could still buy a house, have kids. It would just be tighter.

How we got from there to living separately yet having kids together is part of the balance I've had to strike between my life as and individual and our lives together. When you are with someone with a disability, you are also, in some respects, a quadriplegic as well. D is also, in some respects, deafblind as well. I cannot drive him around when he is ill. He cannot come live with me in a cramped, two story house. When we go to the ocean, he cannot go down to the beach with me (unless all of his brothers are there to help.) Likewise, I cannot engage in a lively conversation with him and a group of his friends or family because I am deaf. We both make decisions and try to balance when we are going to hold each other back to stay with the other person and when we need to let the other one go off without us.

Me having children and living here is a time when we decided that I needed to go off a bit without him to fulfill my dreams. Although I take him along for the parenting ride as much as I possibly can, he knows that when I think of my responsibility to the family unit, the priority is the children and myself, because right now, I am primary to the children's well-being.

The problems with D's health right now are not acutely critical, but so severe and complex overall that I have to deal with the reality that he could go at anytime. And, really, in order to stay here with us, he needs to focus a tremendous amount of time and energy in just keeping himself alive.

Anything is possible. But right now the outlook is that there will be no job in D's life, no house, no financial independence, and no ordinary life. The extent of the damage to his skin and his body's inability to heal itself is so severe that it is hard to see if there will ever be a solution that will allow him to return to normal life. This past year, health-wise for him has been the worst, ever.  Sores on his feet last July were dealt with by amputation and skin graft, a sore on his ischial bone developed while his feet were healing, and while his butt was healing, another sore on his foot developed. I don't know when the cycle will stop, or if it ever will. Tomorrow he goes to see a doctor to decide about more skin graft surgery which will hospitalize him again for several weeks or months.

And as an aside...I hope we are all past placing blame here. All of these medical problems happened under supervision of doctors and nurses. He did delay getting care for his feet last July, but I'm not sure any of this could have been totally prevented. If anyone is to blame, it is the medical insurance companies who continually refuse to allow him the proper equipment that may help prevent some of these problems.

So, anyway, my relationship with D has changed, yet not so much. We still talk all the time and tell each other everything. He still comes over and is enthralled by his children. He and I still are committed to each other and plan to consider each other in each other's plans no matter what. I will not leave him based on disability. I know that is what everyone wants. Everyone considers it some kind of personal flaw that I love a quadriplegic. But I don't care. I know what it is like to date someone and have them say, "I love you, but I can't handle the long-term effects of your disability." I just see no reason to be that way.

But still, the balance must be achieved. What I don't want is to move in with D and have an apartment or house that I couldn't afford on my own if something happened to him. Of course, I could always move or get a roommate, but I do have to think of stability with the kids and a long range plan for myself, just myself. This was always how D and I looked at co-parenting. Financially, the kids and I are a unit, and D is not a major player. (Although he does often contribute money and stuff we need.) My family is not a major player either, albeit renting out dad's place. The idea was always that I had to be able to make it on my own. And basically, I have.

The path for most people to financial security has been to get a good, steady, good paying job with benefits. That would be great, but in my current situation, it is actually less stable than getting SSDI bennies and medicare. It is ALL ABOUT THE HEALTH CARE. I cannot stress to you enough how much this country's screwed up dismal disgrace of a health-care system has ruled both D and my life. Ultimately, problems with the health care system may contribute a great deal to whether D lives or dies. His father said once when he was in the nursing home, "I hope they aren't treating him like he's nothing but a medicare patient." I kept quiet because there was absolutely no point in saying out loud what I was thinking which was, "He is SICK because he is a medicare patient. He is IN A NURSING HOME because he is a medicare patient. There is no 'treating him like'. That is the essence of his existence, that of being a medicare patient. It affects everything."

Even my children, who I pay premiums for, are embroiled in an insurance debacle now in part due to the fact that my son had two febrile seizures that will mark him for the rest of his life as almost uninsurable. I'm not going to go into it now. It will make me too mad. I'm hoping to share it with you when it is resolved, so I can write about it without destroying my keyboard in anger.

Part of the conflict that I have in my family is that they want me to PASS. They want me to get the steady job and live like everyone else. My disability just being a footnote about how I take the bus to work instead of a car. I might have been able to do that 10 years ago. There is no way in hell I can 'pass' anymore. This is how it is supposed to work for disabled people to get a job:

• You get a kick-ass education in a slim field of pre-approved careers by state vocational rehabilitation counselors that they decide your disability matches. (The rules of getting through that kick-ass education are matter for a different post.)
• You do tons of volunteer work so you have the experience to pad your resume that no one will give you with real part-time intern like work.
• You make a resume that doesn't make mention of your disability. You don't mention it in any correspondence with a potential employer. If you did, you'd never get an interview.
• You get to the interview, and you do some super fast talking to convince them that disability doesn't matter. You state in very specific bullet points what simple, inexpensive accommodations you will need to do your job just as well as everyone else. You, of course, know what all of these are without even being on the job yet.
• Your employer is wowed by your persuasion. You have completely wiped away years of misconceptions and prejudices in just one half hour interview. Hell, they even think it is cool to have a disabled person aboard. Disability is all the rage. It's the new Gay.
• If you happen not to convince your employer right away, then you offer to work for a period of time, maybe two weeks, for free. If you suck, he's not committed. But of course in two weeks time you will have the job down so well that he will be thrilled.
• With just a note or a phone call or two before you start, all of your accommodations are set up perfectly to your specifications on the first day of work. You can transition right into full work load just like any other employee.
• Other workers are wary of you at first, but within a few weeks, your ability to do the job ten times better than the average employee and your ability to laugh at jokes about your guide dog showing you where your partners parts are during sex and to answer all the one hundred questions they have about your disability and all of their stories about their previous disability experiences while still doing your job put them at ease in no time.
• Your accommodations that you asked for before even starting the job work perfectly for you for the rest of your life. They never run down or break, the technology never changes, and your disability or your job duties never change, either. You are set for life.
• You have perfectly planned accommodations for every task that comes up, which are assigned to you without bias. On the extremely rare ocassions that you cannot perform one small portion of a task, your co-workers graciously trade duties with you and your boss, admired for her flexibility, congratulates you on your teamwork.
• Just don't ever expect a promotion or a raise past cost of living, because you are lucky they gave you this job in the first place and another job might mean they have to buy you more adaptive equipment.
• You retire with a nice nest egg, because of course your health insurance was so great at this job, you never had to pay exorbitant out of pocket expenses for the medical care you need to keep working. The end.

Okay, so it doesn't work this way. Disabilities change, job duties change, technology changes, bosses change and are less willing to work with you. Voc Rehab only gives you one shot, more or less. So after you lose that first job you worked so hard to get to become "normal," and most disabled people will, don't expect anymore help from them. You can either go through this cycle again and again and gain and lose medical benefits (and money for housing and food and stuff) or you can go on disability and possibly have at least stable, if not all that comprehensive health care. The difference between disabled people in this situation and nondisabled who may lose their job, is that nondisabled people are usually not in a position of needing ongoing health care to survive, or even put themselves back into a position to work again. In addition, nondisabled people's time in between jobs is by far shorter than the disabled (who on average go on 100 interviews for every 10 that their nondisabled counterparts do) and also, the option for purchasing an individual health plan is almost nonexistent for the disabled.

You can really tell the difference in how disabled people live if you compare us to Canadians. They have health care so that is a non-issue. They also get state funded adaptive technology and equipment updated every five years. They also get ongoing voc rehab support and the availability of job support (where a specialist helps you get set up the first few weeks of a new job) and apprenticeship programs for the disabled is much higher. My friend, Nik, who wasn't even a Canadian citizen until recently, has been able to maintain employment for years because of these programs. When he lost his job at a tech company, he was able to participate in three work training programs until he found the right job for his skills with no worries about paying out for adaptive tech he wouldn't use or losing health coverage.

I am not the most disabled person in the world, and as I've said before, there are LOTS of things I can do to contribute to society. My problem is that the nature of my disability, deafblindness, is extremely hard for people to understand and to accommodate. In addition, my disability is incredibly unstable. In around 2001, I lost a huge chunk of hearing in about one month's time. With no time to adjust, the impact it had on my jobs was incredible. I nearly all of my vision in 2004, it did not return for about 5 months. If I had been working at my last job at the time, I would have simply had to call up and quit that day or take an extended leave of absence. I can prepare and prepare for total deafblindness, and even pretend that I am and learn all the technology available for that, but we are talking thousands of dollars of equipment that is not available to me, besides the fact that it changes all the time.

So to me, the steady job route seems more irresponsible than what I am doing now. My sister and many others would think a person like me is either a lazy sloth because I can't pass or if I'm so bad off I should just sacrifice my whole life and sit and stare at a blank wall and try not to get into anyone's way or use any precious resources that society is spending on me. Or, if you are Peter Singer, you think I should just kill myself.

I've never gotten why the poor and disabled are expected to sacrifice so much for the good of society when the rich aren't. The rich are just entitled to take their profit even if it means screwing everyone else. The thing is, people like D and I and many others have a lot of things to offer and contribute. Society is content to just waste us because we don't fit exactly into the profit making set-up. And when we find ways to not let ourselves be wasted, by volunteer work or advocacy or raising children, being a loving family member, even employment (that takes away from someone else), then they demand that we PASS or shut up.

So, getting back to my original thought process here. My plan is to work the system to my advantage as much as I possibly can. Before my mom died and I got pregnant and lost my job and lost my hearing and vision and my guide dog died and D got sick and everything went all wacko and I just lived day to day to keep up, I was working on a home business idea that would enable me to possible make a bit of money (not a whole lot) by incorporating myself and still keep my medical benefits and that itty bitty SSDI check I get. This would enable me to work when I can (hopefully!!) and if the shit hits the fan disability wise, I can take a few months off and adjust without the world ending and then I could get back at it. I haven't been able to work on this since the kids, but I think it is imperative that I give it a go. What I'm doing now, which is piecing together working for D with small odd jobs has got me on a treadmill that is hard to get off of.

Living in this house was part of my plan for added stability. I really think my mom wanted that for me when she tried to buy a house out here that I could live in. After her death, it was made really clear to me that this was not to be a stable arrangement and I could lose this house at any time, especially if my father dies.

The harder thing about living here besides my dad's housework peeves, is that he treats me like I'm a charity case that he is obligated to help because my mother made him do it. There is no understanding of my job situation except that I should be able to "PASS" or as he told me once, "just go live in a nursing home if you are that bad off." Well, I can't pass and I really, REALLY don't want to end up in a nursing home. So there has to be a better way.

Is section 8 better than this? Is that other one (the IRS one?) better than this? What about some kind of Fannie Mae thing for disabled people I heard about? What about habitat for humanity? Or renting a house with another single mom? Or some other kind of co-living situation? I really like the location of where I live, but the cost of living is high here. What about living down in the Willamette Valley somewhere where housing is cheaper? Or, hell, calling up Oprah and seeing if she'll build D and I a house? (Would it be worth the telethon we'd have to put on for her show?) Maybe I can make enough working and put enough money into a house that would count for my business as well? Renting with D and just risking that I may be left in a lurch at some point?

So, lots of questions that I thought I had put to rest when I moved in here. But, my dad is not so much of an asshole that he is kicking me out or anything. I have time. I do have a good deal here, and at times, I think he is trying to work it out with me. So, again, this is me doing what I do best. Working on Plan B,C,D,E, infinity. If I have learned anything, I have learned that in this life there is no stability with money, health, housing, material stuff like that. No one has it, even if they think they do. Some of us just see the edge more clearly than others. If we are lucky, we find stability in relationships, love, friendships, compassion, those kinds of things that we can supply in abundance.

Comments

[rossecorp]

I love this post, even though it is about the difficulties in your life. I love it because just the fact that you feel you have to defend yourself proves your points. I love it because I see clearly how your mind works like mine, turning all the choices over and over and trying to find the best/most workable one. I love it because you GET IT--that it's the other stuff that really matters, even though we have to spend so much time and energy figuring out the material stuff.

[That Girl]

It seems to me (Warning assvice alert) that you take entirely too much crap off of people, speaking as someone who has the same problem from time to time.
Your dad may not be kicking you out but what he is doing is far worse.
Making you feel bad for even existing, for not meeting his standards, for not getting out of the way - parents are not supposed to make you feel "less than".
That kind of abuse causes sickness of the soul, which can be more debilitating than any physical disability.
I think it's great that you are unwilling to give up on your relationship even though it changed from what you expected.
Maybe you should consider some other options - a roommate, etc.
I have been where you are before and what I found was that hanging on to "It's okay for now" when it's really not is instinctive - it's knowing that it could be worse.
But it can also be a lot better.
I wish I could give you some actual help.

[shannon]

I learn so much from you!

One thing I used to keep in mind when I was a starving grad student paying 90% of my income in rent (but with far fewer responsibilities than you) is "my friends will never let me starve/live on the street."

Tell yourself that, because it's true!

xox

[marisa]

i'm a disabled job-seeker too. i just stumbled on this job meta-search site that appears to use google's search technology, but all the search results are job listings!

http://www.indeed.com/

the two search fields are "what" and "where". i suggest putting your zip code in the "where" to find jobs in your area. i even did a search with "metro-accessible -not-metro-accessible" and my zip code and got a list of postings that included the phrase "metro accessible" and excluded the phrase "not metro accessible". whee! (i live in the washington, dc metro area, where many people use the subway.)

you can get a free account and set up alerts to email you job search results for multiple searches.

this is much better than all the random searches i was doing on many many sites.

also, a good site that has advice and info for disabled job seekers (especially blind ones) is eSight:

http://www.esight.org/

good luck!

[cherylc]

Oh dear god, "the new Gay." I just about choked. Or something.

You emailed me a week or so ago. I'm sorry I didn't reply. I got in trouble for being on the web at work, and had to cut back.

I totally pass, but I absolutely need that health insurance and my disease is progressing (RA)so I don't seem to be able to work full-time without feeling sick all the time. I'm trying to find a part-time job with the insurance. Healthcare for everyone is the single most important issue facing this country, I think.

Actually, I'd really be interested in your take on sick vs. disabled. I'm sick, with no physical disablity, yet. I don't feel like I have a disability, exactly, but it feels like something.

Also, a country that is willing to waste a huge percentage of a generation of black men? Those are people they wouldn't even have to make accomodations for. It's depressing.