Susan's Blog

Thursday, March 22, 2012

Of Mice, Men, and Burdens on Society

Ben’s reading Of Mice and Men and he looks like he’s near tears. “Poor bastard,” he said, about Lenny killing the puppies and then the young woman. Ben knows that Lenny was a victim of his time, back when a “simpleton” was nothing but that, and if he had no family to care for him, he was left to the elements. Steinbeck’s story is not a retelling of actual events, but it is certainly real.

Recently I had one of those arguments on Facebook with a “friend” who objected to one of my pleas to save Medicaid, and the programs that spring from those funds. “Why can’t their families take care of their own?” he asked. “I’d never want to be a burden on society.”

Who does? Even if you know one or two who live on “handouts,” you have to know that the bulk of us do not want to. Most people are good. Most people want to lead meaningful lives. Most want to work and to feel useful. But what if you can’t without help?  Throughout history families were indeed the ones — the sole people — to take care of their intellectually disabled relative.  Some families did this and do this admirably. Many of us do. We are the ones who love our family members the most, so it is only natural that we should be the ones to invest the love, energy, time, and money in them! Of course!

But what about the family who can’t? Where do they turn? Neighbors? Church? Synagogue? Maybe. But what if they don’t belong? What if they don’t get along? What if their church is poor and can’t help? Do we just say “tough shit?” And as society becomes more complex, with families split all over the world working where the jobs are, how do families “simply” help their own? If they are working several jobs to pay for our expensive way of life, with their attention absorbed by the demands of those jobs along with all the other things competing for our attention — how do they manage alone the gigantic set of problems brought by a multi-layered disorder like autism?

Let’s suppose life were more simple and straightforward Back Then, whenever that was. Girls were girls and men were men. Women didn’t work outside of the home so they could take care of the children, whatever their issues were. There were enough jobs to go around because we didn’t have so many immigrants or women competing for jobs or minorities given a chance.

Uh huh. Okay, let’s take the Rick Santorum message even further. Maybe we had more stability in the family and in the economy — but at what cost?  Stratified society, minorities as second class citizens, women kept from the workplace…

To tell you the truth, I don’t think life was ever simple and straightforward, even if the pervasive beliefs were:  Take care of your own, don’t expect a handout, God helps those who help themselves. And people suffered. We just didn’t hear as much about it without the Internet and news feeds. We had guys like Lenny, whom the schools were not required to educate. For whom there was no social worker or Welfare agency. No Department of Developmental Services to help him find a program where he could at least be safe. We had guys like Lenny and guys like George, way over his head, unable to meet Lenny’s extraordinary needs. Putting an end to Lenny’s life because it was just too hard.

We had guys like Nat, maybe lucky enough to live home with their moms and dads until a sibling could take them in. If that family operated at the highest functioning levels of supporting each other. If. Or maybe the Nats of the world were simply put into an institution to live a life wandering and staring at walls.

Now that we know what we know about human potential, there is no going back.  We need our social programs. Maybe you don’t, because you have your special family or a really unique, caring town. You have, perhaps, just the right kind of church. Maybe the shopkeeper down the street really gets your kid, and so he has no need of a job coach.

You are in the tiniest minority.

Most of us live far more disorganized, hectic, troubled lives than that. Our world was never simple, but it is so intricately complicated now because we’ve made it that way. We humans have evolved into the Technological Age, the Age of (Too Much) Information. So we need solutions that match the complexity of the people we’ve become. That’s why we can’t turn back the clock to those Good Ole Days when family took care of their own and didn’t ask for a handout. Because if we pay close attention to those Simpler Times, we will find that nothing was simple and in fact people suffered, languished, wasted away.

We know more now, and so the price of our knowledge is that we have more responsibility.  Or is your solution like George’s, simplistic and desperate — and deadly?


Brilliantly said, Susan. Again. 🙂

— added by Niksmom on Thursday, March 22, 2012 at 9:16 pm

Thanks, Beth.

— added by Susan Senator on Thursday, March 22, 2012 at 9:18 pm

Santorum, a while back, was claiming to be a champion for people with autism. (He may still be claiming that; frankly, I don’t care.) His solution was just to give families tax credits. At that time my son’s program cost about $100,000 a year (now it’s even higher). How many people could pay for that with tax credits? And what about families like mine where you’re not just paying for supplemental staffing? It’s not safe for Terry to be home with us on a regular basis. I’m 51, he’s 20, he’s bigger, stronger, faster (and a bolter with aggressive tendencies). People who think families can do it on their own (even with tax credits)just aren’t paying attention. Or they don’t want to.

— added by Catherine Boyle on Thursday, March 22, 2012 at 9:39 pm

Well stated, Susan. How many of these people who argue against public support and argue instead for only families, neighbors, churches to pick up the load — how many of them would willingly choose to be part of an ID/DD/ASD neighbor’s “village” if they were asked? Exactly. There are innovators working on private solutions — especially for housing and jobs — to fill in the growing chasm between the demand and public funds.

— added by Mark L. Olson on Thursday, March 22, 2012 at 10:05 pm

Susan you were kind to the person who asked why we don’t “just take care of our own,” as if we live off a limitless money tree. A friend of mine said recently about another special needs mom, “She just needs to take care of her kid and stop whining.” Wow. makes you reevaluate friendship. Made me, anyway.

The thing to me has two heads; one is that we live in a capitalist society, which, without a safety net, means very simply that whenever you hit the financial wall, be it sooner or later, you’re shit out of luck. The only person from whom i’m willing to take “just take care of your own” is someone who lives so totally off the grid, independently, utilizing NONE of the infrastructure all of our TAXES PAY FOR, that they can actually point straight to their own lifestyle for evidence of entitlement to make such rugged individualist assertions. if this guy is that person, fine; if he’s not…. wow.

say Nat, or my son Marvin, or my autistic, schizophrenic sister, cost ‘society’ 5 million dollars over their life time; does this guy think that if we send these folks out to the ice flow, he’s getting that 5 mil? ’cause…

the other head is, WHY should we just take care of our own? isn’t the nature of society that we are ALL burdens to one another? isn’t that the flip side of all the joyous, wonderful, lovely human relationships we have? in what universe is it bad to help each other? why is pointing the finger at only SOME people as a burden to society an appealing way to approach the brotherhood of humanity?


— added by jessica on Thursday, March 22, 2012 at 11:15 pm

I wonder if anyone in your “friend”‘s family, for two small examples, takes the mortgage deduction, or is retired and benefits from Social Security/Medicare/Medicaid.

If so, does he think of these people as “burdens” on society? They are certainly costing the rest of us money — I’m certainly not personally benefitting from him getting a discount on the costs of his home ownership, or from him having extra money in his pocket because he doesn’t have to give his elderly parents money to live on, or pay for their medical care.

Funny how it only “burdens” society when it is the disabled who are on the receiving end…

— added by Ohio Mom on Friday, March 23, 2012 at 2:28 pm

Amen. So awesomely written and told. Thank you for writing what I have been feeling about my son’s future. You are always ten years ahead of me and I am paying attention like a vigilant, little sister.

— added by Steph on Monday, March 26, 2012 at 8:52 am

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