Friday, August 12, 2011

Apples, cores, instinct and welfare

from Songs of Innocence and Experience - William Blake

The grateful heart sits at a continuous feast.
Proverbs 15:15

So, every now and then, in the interest of being "open-minded," I click on to a few conservative blog sites. You know -- see what The Other is up to. These aren't sites that are well-known or well-trafficked, nor are they sites that have anything of interest other than conservative politics. There are no pretty photos or funny stories about children. There's almost never an inspirational story or even quote. There's absolutely no poetry. Occasionally, I'll leave a comment but generally what I have to say is not well-received, so I read and then move on. One blog, in particular, written by a Texan female lawyer is pithy and educational, but nearly everything she writes is completely and utterly antithetical to my own point of view. She is a good writer, witty and not a little mean-spirited sometimes, so I only check out her blog every few weeks to see what she's been up to. This morning I paid a visit and read a whole post about the recent riots in London, what they mean as far as the "welfare state" goes and how some of the same stuff is evidently going on in our country without the media exposure. 

What stuck out for me was this notion (and she's not alone in pointing it out, obviously) that it's somehow shameful to accept help from the government. This notion lies at the core of American individualism and work ethic, I think, and I'm not sure what I feel about it. On the one hand, I'm as American as the next person, the grandchild of Italian and Syrian immigrants who worked their asses off to "get ahead." My own parents grew up very poor in New York City and aren't nearly as "educated" as I -- sheer hard work enabled them to give me a privileged life. Because of those privileges, I went to college and had opportunities beyond what they, at my age, had probably only dreamed about. The notion of "hand-outs" was frowned upon, if not vilified by nearly all my relatives, and I think I still carry a bit of that around with me. Lawyer Mom points out and quotes from several sources that claim that those who receive government assistance generally only "bite the hand that feeds them," and that those who accept welfare should "be grateful and embarrassed."

Here are two quotes that stand out:

On the subject of handouts, Instapundit linked to a bold blogger who wrote, "I have no issue with a social safety net. I just think the beneficiaries of this net should be grateful and embarrassed." But hold your fire.
He wrote about his grandfather during the Depression, how he would come home exhausted after working all day for the WPA. He was ashamed he needed help from the government and he wanted to give the taxpayers a fair day's work for his wage.

But what Whittle most pointedly assails is that no one on public assistance ever thanks the taxpayers who support them. 

This post has given me much to think about, ponder. It both attracts me in a curious way and repels me like a roadside accident. It raises the hairs on the back of my neck -- partly out of indignation and partly out of recognition. I'd say that I'm exquisitely aware of my own mental projections -- does it bother me precisely because I agree with parts of it? Does it bother me because it repels me? Does it repel me because I agree with it? Are my instincts that veer more toward Christian charity than American capitalism under fire?

I'm not sure.

I recently "won" a case -- or Sophie "won" a case -- that gives us a generous amount of money to help care for her, day to day. The program is called In Home Supportive Services, a government "entitlement" that enables the disabled and elderly to stay in their homes with providers rather than in an institution. Like everything else in this country (and world, perhaps), the care of people with disabilities is quantified -- and it was determined that it's cheaper to take care of these people in their homes (it works out nicely, too, that people are generally happier in their homes). In any case, the burden lies on the disabled and their families to defend this "welfare" by pointing out that it's nearly impossible to hold down a job when one is taking care of a child with severe disabilities; therefore, one can't be a productive member of society. As Sophie's provider, I am now paid a small amount per hour (definitely not a living wage) so that I can keep her at home.

I am profoundly thankful for this money -- so thankful that when I opened the envelope with the judge's orders to grant it, I cried. Hard. The help is life-changing for everyone in my family. But I've been embarrassed to write about this -- embarrassed because I know that there are many folks out there far more needy than I am and that I am, perhaps, using what might be theirs. I feel apologetic -- defensive -- and I understand the roots of that defensiveness to be what I imagine are the roots, or the core of what it means to be an American. But then I wonder if this "core" isn't, at worst, rotten -- rotten because it presupposes us all to be individuals, hardly connected to one another and certainly not responsible for one another. 

Having a disabled child and witnessing the problems and heartache of the most vulnerable in our culture has changed me, revealed a different instinct and underlined my own vulnerability and -- dare I say it -- need for help. 

It seems that my "core" and my instinct are at odds.

I'm interested to hear what you think.          


  1. I think that this is precisely what government is for. To BE the safety net. And once in a while, it does the right thing- not only morally, but the financially sound one, as well. Of course it makes more sense to provide some income to a person charged with the day-to-day care of a person with disabilities than to pay for the disabled to be in a facility. You are, in fact, dear Elizabeth, saving the taxpayers money. So there.
    Now, having said this- do I believe that everyone receiving food stamps or other government assistance is completely justified? No I do not. Many, many are- those programs SAVE LIVES. And you can't throw the baby out with the bathwater.
    Like everything else in life, there is rarely a black and a white- there are only shade of gray.
    It is a complex and many-layered situation and anyone who claims to be entirely one way or another about it has not allowed themselves to actually think about it, but is only parroting some inner "belief" be it a totally liberal one or a totally conservative one.
    And honey- you KNOW me.
    In your case, in Sophie's case, in other situations like yours, I think the government is doing the right thing by providing help. Which comes back to my original statement- what else is government for?

  2. "Pity would be no more/if we did not make somebody poor." Blake's "The Human Abstract." Society creates wealth and poverty. The gov't aid for your daughter is society's "mite" in acknowledgment of this. Pity is also an "abstract" emotion; you pity a group, a class, and put them down with your complacent pity. Charity (Christian and otherwise) is always directed at a real person, not an abstraction. It uplifts both the giver and receiver.

  3. I started to write a comment with my thoughts, but then had to erase it and think again. This post struck such a resonant chord with me that I have to write far more than will fit here. If you wish, please come find my blog today for my thoughts.

    Thank you for bringing this up and sharing your triumph with Sophie. I am thrilled that you have this money available to you and hope that your story inspires other families to go get help, too.

  4. I think I would like to give you a hug. Which has nothing to do with the belief that I have in which government needs to help the helpless. You are brave and wonderful and funny. You work hard at what you do (raise your family and be an all-around pretty great human being) and I wish you did receive a living wage. I hate that you have to "do battle" for basic comfort and care. Hang in there.

  5. I am thrilled that Sophie remains in her loving home with her family to be cared for by you. Institutionalizing her would cost more both in dollars and in sadness. The safety net, it seems to me, should be unfurled just like it has been in your "case." You care for Sophie, you bake cakes and sell them; your husband works long hours running his business; your boys live with all of the above minute to minute, day by day. How different they would be if Sophie were sent away, and they were left to fend for themselves while you went off and worked an inflexible job outside the home. This money is a win Elizabeth--for everyone and for society, too. The only thing better would be if Sophie didn't have seizures at all. As a taxpayer, I thinking paying caregivers in the home is money well-spent.

  6. This is WHY I pay taxes, for heaven's sake! So the government can provide a safety net for the disabled and poor and also it can make roads and pay policemen and park rangers and public school teachers, etcetera. In my opinion, this american attitude of 'pull yourself up by your own bootstraps' is faulty and inadequate. Anyone who argues that we should simply take care of ourselves and that hard work alone will pave the way to a house on a hill should take a long, hard look at the government services they use and consider if they had to pay for all of them themselves, instead of the tiny fraction that taxes take up. A road to your house? A plow driver? That ambulance? That firefighter? The salaries of your children's teachers and janitors and food service workers, etc, etc, etc? I'm sure Bill Gates could afford to pay for all that himself, but I'm pretty sure the rest of us couldn't.

    Essentially, I strongly believe that I pay taxes in order to contribute to a civil and safe society, to provide a social safety net which is PART of having a civil and just society.

    I'm glad you can stay home with Sophie. I'm glad the judgement went in your favor, and in no way shape or form do I believe that you're taking a 'handout' in the pejorative sense. This is the function of a society: to provide for all its members.

  7. I feel both sides of this issue as well. I choose to stay a public servant and pull a public servant's salary, even though I could make much more $ with my level of education in the private sector... And then I (gratefully) accept my son's Katie Beckett insurance waiver so I can afford treatment and meds that my regular insurance wouldn't cover otherwise.
    Such an complex tangled issue.
    I'm so glad you are getting some financial help - I know how life changing it is.

  8. Elizabeth, first of all we need to get the name and address of the person who approved Sophie's case, so we can write a thank you letter. That is incredibly good news, not just for your family, but for the whole village, because it means that the system CAN work the way it should. While I was doing the PR at Shepherd we advocated aggressive for at-home care vs nursing home and it was always an uphill battle.

  9. Well, Elizabeth...we also receive a lot of assistance so we can always care for Adam at home...he gets SSI, Medicaid, my family insurance premiums are paid so he is also on our plan, a generous stipend for his alternative therapies and about 60 hours a week of personal care attendant.
    I am not embarrassed because I believe in our inter-connectedness and in the role of parents to care for their severely disabled kids at home. This is our personal commitment, but not possible without help.
    I only feel very bad for those parents who have neither the fortitude nor persistence to pursue and pressure the bureaucracy to get what they need. Our kids deserve the best ans I an willing to do my share. It's not a handout but a support to make life at home possible.

  10. I can't read those me indigestion.

    I believe in balance. Life is seldom all one thing or another. The truth is seldom an isolated boulder, but part of a hillside or mountain chain. Need and help are relative to circumstance.

    No one, I repeat, no one makes it through life alone, we've ALL benefited from others in some way. I don't want to live in a society where people can starve or have to sleep under bridges because they're unable to work and/or don't have family to help.

    I believe our joint funds should buy infrastructure and food, education, medicine and housing instead of rockets and bombs.

    And I think those people who don't see beyond their own good fortune will someday lose a loved one to alcoholism or be laid off from a job or be paralyzed by a stroke and find out just how connected they need to be.

  11. PS DELIGHTED you're receiving financial help for Sophie!

  12. My "comment" turned into such a lengthy disquisition that I erased it and will just say that the bottom lines of all the subjects you've raised are sobering as hell.

  13. As a taxpaying American citizen, I am so proud that the system worked, and that the work you do in caring for Sophie has been given some semblance of financial value.

    I have so many thoughts on this topic, but I fear plunging in too deep. I might end up writing a novella instead of a comment.

  14. Here's my two cents - at some point, many parents who have ever needed some sort of government assistance have also contributed to that fund through whatever work they had previously done (and might still be doing). It's there for us when and if we need it. And I am infinitely grateful for it (though not embarrassed, most of the time).

  15. Thank you everyone for your support and for your added thoughts and words. You help to clarify much of what I was thinking about --

  16. I was on food stamps and medi-cal in my early twenties and went to the free clinic in Laguna beach for check ups. It never occurred to me to thank taxpayers. I thanked God. And I wasn't embarrassed. Just thankful. You can be thankful too ... If Sophie could articulate it, she'd tell you that.

  17. Thankful and embarrassed? Oh dear, what a moronic concept. How can anyone be thankful and embarrassed at the same time? What would this world be like if compassion and empathy were absent from each bit of help given? Could that still be called help?

    I despair when my taxes go to pay for wars, and I feel the goodness of the Universe at the tip of my fingers when a grant is given to help a family, no matter what the reason or the rhyme may be.

    I celebrate all small victories. In a perfect world no one would have to fight to receive help, it should be like blood to the wound:
    there without having to ask for it. Or to be embarrassed by welcoming it in a time of need.

  18. There is a lot here in this post.

    I believe that we are all connected and that what happens to the least of us, affects us all. It is our responsibility to care, to be kind, to be compassionate. All of us will need help at some point in our lives.

    Katie requires a huge amount of resources for her care. It is not her fault, nor is it mine. It is just a fact. She is a human being and as such deserves to live with dignity and respect. I cannot care for her by myself, nobody could. She truly does requires a village and I am thankful that the government helps to provide that village.

    As for the two opposing views that you have, they are both okay. You can hold them in each hand. They can both exist at the same time. We are complex creatures, we humans. I was raised by parents who taught me not to ask for help, much to my detriment, and I also think we all need help.

    I think it is wonderful that you are receiving funding to allow Sophie to stay in your home. That's what is supposed to happen.

    Hopefully I made sense. Take care.

  19. Someone I met recently was a kind of standard-issue middle-class heterosexual white guy. He pointed out that he'd never once considered inequalities, hierarchies, or oppressions in our society, until he had a daughter with Down syndrome. He said suddenly he recognized--with a kind of shock--that our nation doesn't live up to its rhetoric, and now he's working to change that.

    Yeah, having a child with a disability can really reveal some of the hidden structures in our society. I think being in any sort of vulnerable moment can be incredibly revealing--not for everyone, but for some of us, and I think that's a big deal.

    I am very, very happy to hear that you're receiving much needed support! I reiterate what many commenters have said: I'm delighted that my taxes are doing this sort of work!

  20. I cannot even being to share all of my thoughts on this. As you know, I am in the same boat and share many of your viewpoints.

    I am not embarrassed in the least to get help from the government for Maggie. She would not survive without it and the taxpayers are getting a very good bang for their buck with me in charge. Perhaps taxxpayers should lbe thanking US.

    But I take it a step further than that. If we are to measure a society by how it takes care of its most vulnerable citizens, and society is dong so little for this vulnerable population, it doesn't say much. Perhaps using humanity instead of dollars as a measure would truly level the playing field.

    I am thankful that we don't measure our society's worth the way that woman in Texas does. I sure hope she never needs any help.

    I will wait for her thank you note.

  21. i wrote you a long comment this morning about what it took to get home care for my 93 year old aunt, and it disappeared, and i cant reconstruct it, so let me just say, i cried when i read you won sophie's case because i know what it took to press my aunt's case, a year of my life, expensive lawyers, submitting and resubmitting papers, crazy fine print, etc etc to get my aunt certified for home care, and at one point i just broke down crying, i sobbed why is this so hard! cant they see how much she needs this? and so i know a little of what it takes, even though i cannot imagine what it must feel like when its your own child, and so i cried, happy for you, so happy that you prevailed and also sad that you had to fight so hard for what should simply be.

    you are one amazing mother which is why sophie chose you. amen.

  22. Dear Elizabeth,
    We are all one family when it comes to taking care of children,or at least we should be, particularly those with disabilities. This myth of rugged individualism that encompasses so much of what we know as the American dream and infiltrates every aspect of American life, does not exist in other countries, and certainly the notion of "shame" for needing to ask for help does not exist. This is a typically American invention and its roots are as sick as the plant that grows from them. I admire what you do with your daughter. I am reminded of how the Germans treated those who were mentally challenged and I am fearful that if we focus everything on economics we may become equally as callous. You are a beautiful person and so is Sophie. Bless both of you and your family.

  23. So glad you won the case, that's such great news!

    I'm from Australia, we have a bit of a different system here, down under, traditionally far more "welfare state" than the US, and thank goodness. It's the responsibility of society to look after all its members, and I think it's far from embarrassing to accept it.

    It does sit uncomfortably, though, sometimes. I think this is from our culture's myth of individualism, that if we all just try hard enough, or more, or better, we can do it all alone, or (on the inevitable other hand) that all the responsibility rests on us for "failure". I think this attitude is also why disability sits so awkwardly with many people, it's somehow a personal (or maternal) failure of some kind. Or so the underlying attitude goes.

    So combine disability with money, social money, and it's an ugly mix of expectations, personal feelings of responsiblity, and some all round crappiness from society in general. Hard all round, but on a personal note, it's awfully good you've got some money to "be going on with!" xo

  24. I'm just catching up on your blog again. Life has been hard this summer with the 3 of them at home and me trying to work. I make 80.00 and pay out 30.00 for sitters! I know i told you this but a few years back our state began to "punish" those disabled who stayed at home by reducing their yearly allotment to 14,000. There was an article in the paper about special needs men in our state who are being institutionalized for 100,000 per man and being encouraged to have sex with one another during their "quiet time." The social worker and nurse whistle blowers were both fired. Recently my personal care assistant had to quit working for a young disabled man 2 days a week when our state reduced the "companion" fee from over $10 an hour to $6 an hour. That's not even minimum wage and how they get away with it I'll never understand! The result is most of if not all of the companions quit and left the families they have worked for. Some for years.They simply cannot support their own families making over $4.00 less an hour. Little by little our state is whittling away services for the disabled. What will the family members do now? How will they work?
    I applaud the states who are still helping the disabled but caution won't last for long.

  25. I am late to this party but I'm so glad for the ruling in your favor.

    About the issues you raise, I will just say that all too often, I think this country doesn't really care about the things we say matter most. We talk a good game, but so many people fall through the cracks and nobody seems to care.

    And not to hijack, but I think that I am going to enter a cryosleep chamber so that I don't have to hear about Michele Bachmann and Rick Perry for the next year.

  26. Wow. I found this extremely thought-provoking and powerfully written. I sincerely identify with what you're saying. I'm the product of parents from the "greatest generation" who would never have been able to live with themselves if they took a handout. But times were different then. I sincerely believe that our government should provide help to those who need it. But I know that there are many people who are "takers", who live (sponge?) off the government, and don't give back. And so many people nowadays (I truly sound like an ancient fart) expect to get something for nothing - EXPECT the government to take care of them. Dear Lord, I almost sound like a conservative, don't I? Eek. I'm afraid that I gratefully draw unemployment when I need it, but it always makes me feel a little icky. I am SO happy for you that you are getting help that enables you to stay with Sophie. It will make all the difference in the world for your family. And I know that you and yours completely deserve it and are grateful for it. Is that what makes someone worthy? Gratitude? It's a tough call, isn't it? And how does anybody else (me!) know who "deserves" help and who is truly grateful?

    And I agree with Becky. I'm starting to dread this election and all the internet/social media drama. I know it will make me unduly ANGRY.



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