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Culture and Consciousness

  • Posted on November 10, 2014 at 11:21 AM

Clearly, it’s taking me longer to recover than one might think. I’m feeling much better than I have been, but if you could hear my voice you’d know first thing that I am still sick. I am still congested and still coughing quite a lot, though no longer so much and so deeply that my sides ache. What’s more obvious than that is that my voice is still recovering from a bout with laryngitis. Still, I have been “off” too long and I’m doing my best to get back to being productive. As I am starting to get back to work, I wanted to take a moment to share some of the thoughts that have been with me these past several weeks.

I’ve wanted to read James Charlton’s “Nothing About Us Without Us” for a while now, and I finally got my own copy. Currently, I’m reading five books at a time—each book covering a different subject. (This count does not include textbooks.) Don’t be too impressed, because I’m reading them all very slowly, because I’m not just reading them, I’m also reflecting upon their contents and studying them as deeply as I can. I like the eclectic nature of it, even if it means my progress is slower than it might otherwise be, because I come away with a much deeper understanding than a cursory reading would provide. Besides, sometimes the things I read from these different books click together in unexpected ways.

I hope you read my confession, because this is directly related to that post. Something that Charlton wrote on page 27 helped trigger the realization I describe in that post:

“Most people with disabilities actually come to believe that they are less normal, less capable than others. Self-pity, self-hate, shame, and other manifestations of this process are devastating for they prevent people with disabilities from knowing their real selves, their real needs, and their real capabilities and from recognizing the options they in fact have. False consciousness and alienation also obscure the source of their oppression.”

Charlton goes on to explore the meaning of consciousness, culminating (on page 29) in this:

“The point is that consciousness cannot be separated from the real world, from politics and culture. There is an important relationship between being and consciousness. Social being informs consciousness and consciousness informs being. There is mutual interplay. Consciousness is not a container that ideas and experiences are poured into. Consciousness is a process of awareness that is influenced by social conditions, chance, and innate cognition.”

I live in a culture that systemically devalues people with disabilities. I live in a caretaker culture, in which our government is expected to take care of people with a variety of disadvantages in a variety of ways that further reinforces the notion that they cannot take care of themselves. This culture is being reinforced through my “human resource management” studies, which consistently uses ablist language and caretaker ideas while purporting to support diversity.

It’s left me feeling like I’m getting it from all sides. On the one hand, I firmly believe that the “safety net” the U.S. and other “developed” nations provide is necessary and beneficial to society. Furthermore, I believe the “safety net” should be stronger than it is in the U.S. Simply put, some people fall through no (or little) fault of their own and these people “deserve” to be caught in the net. Other people fall due to their own failings and vices and, though they seem less “deserving,” it is still in the best interests of our society that these people are caught in the net. Finally, there are people who are “pushed” by our society, who have few natural chances to succeed, and need to be caught be the net. Unfortunately, the fact is that this “safety net” we’ve created often fails to catch people. But the true social crime is that we have inadequate means of helping people out of the net and back up into “regular” society.

On the other hand, I reject the paternalistic, caretaker attitude out society projects towards people who get caught by the net. (Note that these condescending attitudes are even stronger to those we’ve failed to catch in the net.) The underlying prejudice is that the people who provide the net are “better than” those who get caught in the net. Many of the existing mechanisms that are put into place to help people out of the net (or to make sure they don’t have to rely on the net at all) are just as paternalistic and condescending as the net itself, including affirmative action and the many other mechanisms that “promote diversity.” The idea here is that these people shouldn’t be treated differently; to ensure that they aren’t treated differently (because we know that they really are treated differently) we help them out of the net using “progressive” initiatives (because we know that they cannot succeed on their own). The whole system is a subtle, but powerful reinforcement of the underlying belief that the people our society casts off really are “less than” those that society embraces.

This is one of the reasons why I just can’t support Democrats. The language they use and the policies they so often create are just so patronizing that their underlying belief in inequality seems blatant to me and it’s offensive. But it’s also one of the reasons why I just can’t support Republicans, either. They’re less patronizing, but they’re also less apt to care enough to create the policies and programs that can actually help people. It’s frustrating, because neither the “safety net” nor the “hands up” need be patronizing or paternalistic. That attitude is not necessary, but it is beneficial if you’re more interested in maintaining a voter base than you are in actually helping people. The more people who are dependent on Democrats’ initiatives for basic survival the more people are likely to vote for them. And our bureaucracy often expresses both the political interests and the patronizing attitudes inherent in the system, when they’re not reinforcing them outright.

So, I’ve been struggling with my own limitations for over a month now. Not only have I been stressed beyond what I can bear, not only have I made myself quite literally ill (thrice over now), but I’ve also been imbibing this ablist garbage, while also reading two books (Charlton’s and a book about revising government) that help me to better envision how things could be. I’ve come away from this mess—rather I’m trying to climb out of this mess—feeling very weak indeed. Physically, I am weakened. More than that, I’m demoralized, because I’ve learned that I am not immune to this culture that I live in. I internalize it. When I’m strong enough, I reject it. Mentally, I reject it outright. But emotionally, when my filters and defenses are shredded, I internalize it and it sticks with me. I spew it back out in the form of self-talk that makes it harder to stand back up and get back to work. Then, I have to go back and clean the garbage out of my system by analyzing it, weighing its merits, and then discarding it once I realize (again) that it really doesn’t have any. Before all of this, I was arrogant enough to think I was immune to this garbage, because I was conscious of it. I know it is garbage, so why would I be susceptible to it! But it doesn’t work that way. Intellectually, perhaps I am immune, but how I feel is something entirely different. Sadly, I hear it, I feel it, and it hurts. When it gets its slimy tentacles tangled up inside me, it hurts more than I can bear.

What We Want

  • Posted on August 16, 2013 at 10:00 AM

If you’re even marginally involved in the greater autism community, then you probably know that our community is as polarized as American politics. We tend to get so caught up in the how that we fail to see that, when it comes right down to it, most of us want the same things.

We want people with autism—both as children and as adults—to be able to live happy, healthy, fulfilling lives.

If you recognize this similarity, if you agree that this is the real goal of everything you do, then why not reach across the aisle and cooperate with others who want the same thing?

We can work together. We can achieve our common goals. We can find ways to compromise so that we can share a vision of the reality we seek.

We can, because we have to. If we don’t, we’ll fail.

It’s as simple as that.

Discuss vs. Debate

  • Posted on January 6, 2012 at 8:00 AM

According to, discussion means:

an act or instance of discussing;  consideration or examination by argument, comment, etc., especially to explore solutions; informal debate.

Whereas, debate means:

1. a discussion, as of a public question in an assembly, involving opposing viewpoints: a debate in the Senate on farm price supports.

2. a formal contest in which the affirmative and negative sides of a proposition are advocated by opposing speakers.

3. deliberation; consideration.

4. Archaic . strife; contention.

In the greater autism community, we need more discussion and less debate.  If all we’re doing is arguing about who’s right and who’s wrong—no matter how respectful and considerate our approach is—we’re not accomplishing much.  If, on the other hand, we’re discussing problems of mutual interest, we just might be able to come up with mutually agreeable solutions.  If we can do that, we can work together to act on those solutions in a public forum.

Consider the political arena for a moment:  Two primary “sides” exist in the political forum, Democrats and Republicans.  When any seat is up for grabs, say the Oval Office, you’ll hear a lot of debate about which side should take the seat.  They don’t do anything.  They don’t decide anything.  It’s all up to the voters.  They just debate to show us our options.

Then, when they finally do get into office, usually both sides are heavily represented in the different elected bodies.  We have the House of Representatives, the Senate, and the President.  Consider our current bodies.  How much do they actually accomplish?  How many problems do they actually solve?  What is the result of all their debating?

My answer is “not much.”  Perhaps you disagree.  If so, keep debating.  If, however, you happen to agree with me, then maybe what we should do is get together and discuss what needs to be accomplished and how we might work together to accomplish it.

A Vision for the Future

  • Posted on December 5, 2011 at 8:00 AM

Lines are drawn in the sand. A community of interested, active participants is divided and shattered into ineffectual bits and pieces. People who care, who are knowledgeable, who mean well, who are willing to work for change…people who should work together butt their heads against each other, wasting their energy on each other, arguing with CAPS, shouting across picket lines, reveling in the damage done to the other side. As these divisions are formed, it seems we are drawn to dichotomies. However much we know there are many sides, many points of view, and much room for both agreement and disagreement; we inevitably boil it all down to “us” or “them.” And those who wield the power go on their merry ways, sacrificing the welfare of the many for the profit of the few, with no concerted effort to thwart them.

The environment is discouragingly familiar. I find it sad and disappointing that I could be describing the autism community. You see, I left that environment years ago when I left the political blogosphere. I was tired of watching the citizens that make up this democracy turn on each other while those who held power exercised it with impunity. While there are legitimate debates between conservatives and liberals, and all the mid-points in-between, I couldn’t stand watching either side defend their dirty politicians as if their talking-points were motivated by anything other than political self-interest. (Full disclosure: I was party to such behavior early in my foray into politics; it was listening to other “sides” that helped me to see what was going on and it was my affinity for “the big picture” that made it clear that positive change wouldn’t come out of such dialogues.)

I didn’t expect that scene to be replayed in the autism community. I didn’t expect to see the different sides within that community turn on each other with such force that it risked grinding the forward motion of the community to a halt. Yet, I see it happening.

Sure, there’ve been disagreements from the beginning. There have been sides. Some could be dismissed as fringy quacks. Others were in natural opposition. But lately it seems there is less and less reasonable discourse and discussion among those who used to be capable of it. Instead, we get vicious diatribes. There doesn’t seem to be much room any more to speak and be heard by anyone who doesn’t already agree with you. While self-advocates and parent-advocates are duking it out, those with power go along their merry way.

I close my eyes and think about Gifford and the horrible days that followed her shooting. I think about how each side, pretty much ignoring what happened, turned on each other. I think about the recent snafu involving a Republican something-or-other distributing an image of President Obama as a zombie with a bullet through the head. I think about the verbal attacks that followed. I’m not a Gifford fan. Nor am I an Obama fan. I’m just a citizen who wants the middle ground to have a voice, too; a citizen who would rather work to fix what’s wrong with this country than argue who is to blame for its unavoidable ruin.

I close my eyes and try to imagine the autism community reaching the same caustic point. I wish I could say it was unimaginable, but the way we’re going…it’s not. I can close my eyes (and without the benefit of mental pictures) see just how far astray this community could go.

I left the political blogosphere because I couldn’t stand what I was seeing. I’ve “spoken” with several people in the autism blogosphere who are considering doing the same. With all due respect to what they were trying to do, the people who are calling that recent “dialogue” snafu a success have closed their minds to the terrible consequences of their poor judgment. Diatribes and personal attacks are not steps towards productive discourse. For many, that was a last straw. They’ve opted out of such “discussions.” Now, if their voices are heard online at all, it will only be by those who are deemed “safe.” If that’s a victory, then we all might as well pack our metaphorical bags and go home, because if fractures like that continue to be hailed as victories, the autism community will shatter.

I, for one, don’t want to see that happen.

Time is against me. I have an idea. But it has to be done right. I need resources I don’t have. I need collaborators and contributors. I need time. My conservative estimate is that I will need eighteen months to get everything into place in order to launch my idea to the public. A lot could happen in eighteen months. Voices may be lost. Irreconcilable differences may be formed. The autism community could easily shatter in eighteen months.

But I can’t walk away this time. I have to try. And I need to hurry.

Independence: Part 2

  • Posted on July 17, 2011 at 4:07 AM

So, what does independence really mean? What is its significance in American culture?

Independence is “freedom from the control, influence, support, aid, or the like, of others.” In American history, independence was primarily a political matter. As a fledgling nation, we wanted independence from the control and taxation of the British Empire. I support this kind of independence. In our Constitution, we have also ensured another kind of independence: Independence from the government, which is manifest in the freedom to speak openly, to organize, to arm oneself, and—all together—the freedom of self-determination. All these are good things.

But I can’t help but think our obsession with independence is a bit misguided. Sure, independent thought and free-will, with minimal governmental obstruction, are foundations of this nation—which I wholly support. But our obsession with independence has gone far beyond that, while at the same time neglecting the basic tenets of our founding beliefs. We focus less on self-determination and more focus on self-sufficiency. The less self-sufficient you are, the less valued you are, and the less respected your legal rights become.

I could write a political post about how government encroaches on independent thought and free-will, and how as a democratic republic we should actively resist. But that’s not the focus of this blog and my past side-steps into politics on this venue haven’t gone so well. Besides, I’m more concerned about the ways we distract ourselves with assumptions of human value based on a person’s independent living status. As if whether or not you can hold down a job, button up your coat, or drive a car are the true indicators of your human worth—rather than a belief that we’ve all been endowed with unalienable rights and we are all created equal.

I’ve been told that this focus on independent living is rooted in our colonial history. If people weren’t independent, they didn’t survive. But is that really true? Granted, I’m a bit removed from colonial days, but as I understand it neighbors actually helped each other back then. That doesn’t sound very independent to me. You need a barn built? Sure, you could take weeks or months and do it yourself. Maybe you could, depending on your access to assistive technologies, such as winches and levers. Or you could pass the word along to your neighbors and get a bunch of people together and get the barn built in a day. Which do you think they did? I’m sure some people made rudimentary barns and houses without help, but when help was available they used it. Why? Because life is better when you can and do get the help you need, whether it’s from technology, other people, or both

I believe in independence. I believe people should be empowered to do the things they can do, and that often means providing them with technologies and education to get them to a point of actionable power. Then, once they reach the point of success, it means stepping back and letting them do it. But, before you get to that point of success, you do need help. You need to learn, you need tools, and you need people to help you. That’s true whether you have a disability or not.

Ah, but the difference is some people, when given the tools and assistance they need, can become more independent then others! Really? How much of that is genuine potential, or lack thereof, and how much of that is appropriateness of tools and education? We assume some people are more able—or have more potential for “ableness”—than others. Yet, as a culture, we resist providing those who are deemed less able with appropriate technological and educational adaptations. How can we really know what people are capable of if we only provide a certain set of standardized tools and we only provide those to the people we think can use them? Does that reflect a belief in independence or a belief in standardization?

Wisconsin’s Teacher Protests: What the Protests are NOT About

  • Posted on February 26, 2011 at 3:07 AM

Earlier this week, I wrote about the protests in Wisconsin that hit the national news feeds so hard.  It was the kind of political post that I try to stay away from on this blog.  However, I felt it necessary to post about what the protest were about, before I posted about what the protests were NOT about.

In the United States, we spend more to educate consumers about what products to buy than we spend to educate our children.  This fact provides a disturbing illustration of US priorities when it comes to education.  We do not pay teachers enough to hire and retain the high quality teachers our children deserve.  We do not devote enough resources to providing our children with the high quality learning environments they deserve.  We do not devote enough resources to develop the best methodologies for teaching our children, nor do we train our teachers in the existing best practices as our children deserve.

Imagine if parents, teachers, school administrators, and community leaders protested our country low prioritization of education.  Imagine if it happened in just one state.  The way the protests in Madison have spread, we could raise awareness to new heights.  Instead, teachers protest over their union rights, their pay raises, and the amount they must contribute to their benefits packages.  If the protesters in Madison are to be believed, union rights are sacrosanct, but our children’s rights to a high quality education are not.  If teachers have to be let go, if classes have to be shut down, if services for students with disabilities need to be pared back or eliminated—well, that’s fine.  Just don’t touch their union rights. 

Our public schools are in trouble.  Unions do not help the situation.  It seems like nobody is really helping the situation.  Our priorities haven’t changed.  Our country still wants to provide students with an assembly-line style education for as little money as possible.  As much as special education rights represent a dramatic shift from that mentality, that shift has only gone so far.  Too many people argue that special education deprives “real” students of the resources they need.  Providing those “real” students with individualized education isn’t even on the negotiating table.

Why not?  Why aren’t our children our highest priority?  Why is it so easy for education budgets to be attacked?  Why do we, the voting public, tolerate the federal government’s inadequate support for federally mandated education, while our politicians vote for pork barrel spending to buy off their constituents?

I’m a fiscal conservative.  I believe the government should live within a balanced budget.  But I also believe that our spending priorities have to benefit the people—not just some special interest groups, but all the people—first and foremost.  Few things satisfy that priority like providing our children with a high quality education.  But that isn’t our priority because the voting public, the protesters, and the lobbyists do not make it a priority—so our elected politicians do not have to either.

There are a lot of things worthy of protest.  There are a lot of things that are worth my time and energy.  Protecting union rights are not.  Once upon a time, when workers were systematically abused by their employers and unions fought against those abuses, the unions were worth fighting for.  Now unions are a political force unto themselves, answerable first and foremost to themselves, and then to the workers they represent.  Like any other special interest group limiting information or disseminating misinformation is their stock and trade, a means of influencing their base, and they are good at it.

The irony is that if our present day workers—including the college-educated teachers who are currently teaching our kids—had a better education, then these tactics wouldn’t work nearly so well.  But, that’s not really ironic at all.  It’s the whole point.  Why would decision makers provide their constituents with a high quality education when doing so would require them to meet higher standards of political discourse and legislative action?  It’d be like shooting themselves in the foot.

Wisconsin’s Teacher Protests: What the Protests are About

  • Posted on February 21, 2011 at 6:39 AM

Sometimes it’s difficult to keep my political blogging past in the past.  When Wisconsin makes the national news day after day, it’s difficult.  When my kids’ schools are closed due to political protests, it’s difficult.  I wanted to post about the protests on Friday, but I resisted…for a while, anyway.  The more I thought about it, the more I saw this as an opportunity to post about what the protests are NOT about.  But first, I’ll post about what the protests are about.

According to the union protesters:

  • This bill eliminates the union’s ability bargain with local governments and endangers their union’s ability to protect workers’ rights.

According to Wisconsin Governor Scott Walker:

  • Wisconsin is broke.
  • He was elected to shore up deficit spending.
  • He will reduce how much money the state provides to local governments to fund vital services.
  • This bill provides tools to those local governments to keep government jobs and keep costs under control.
  • This bill does so by increasing the amount government workers must contribute to their retirement and health care benefits, while limiting the union’s ability to negotiate with local governments, requiring local voter approval for negotiations.
  • Workers rights are protected by Wisconsin law, not the union.

Personally, I think the union has motivated the workers they represent to protest due to another facet of this bill:  It gives worker the choice to join the union or not.  Workers currently do not have that choice in Wisconsin.  For example, if you are hired to work as a teacher for the public school system, you are automatically part of the union and you automatically have to pay union dues.  You join the union or you don’t work as a teacher.  The unions want to protect this status quo, because it increases their rosters and the amount of dues they collect.  I believe that is the primary reason the union has worked so hard to stir up their members.

This is also the primary reason I do not agree with the protesters.  There is a lot of misinformation being disseminated on the news stations.  Hailing back to my political blogging days, I did something profound:  I actually read the bill.  Governor Walker is right; it does limit the union’s powers.  It does not eliminate them as protesters and pundits have claimed.  It also does not increase the amounts workers will have to contribute by nearly as much as many pundits have claimed.  However, the bill is also disingenuous, as most pieces of legislation are.  It is disingenuous because it lumps things like whether or not union membership can be forced on a worker with an emergency budget bill.  That kind of thing happens a lot, but it shouldn’t.

While I support Governor Walker’s efforts to respond to the havoc the recession has wrought on Wisconsin’s economy, I don’t support his decision to include anti-union legislation with an emergency budget bill.  While I support workers’ right to protest for the issues that are important to them, I cannot join in a protest that supports forcing workers into a union.  Nor do I think it reasonable for government workers to stay isolated from the effects of the recession when that isolation contributes to the hardships the taxpayers must endure.  It’s a tough choice, but Governor Walker was elected to make it.