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Testing: Then and Now

  • Posted on February 28, 2011 at 10:30 AM

A recent article by Mike Stobbe “uncovers” the little known history of human experimentation in the United States.

Shocking as it may seem, U.S. government doctors once thought it was fine to experiment on disabled people and prison inmates.

Ethics is somewhat progressive.  What once seemed acceptable now seems abominable.  Yet, sometimes I have to wonder how some acts were ever justified.  Then again, there are throwbacks who still can justify their behavior, though it’s clearly unethical by contemporary standards.  Now, we apologize for past mistakes:

Much of this horrific history is 40 to 80 years old, but it is the backdrop for a meeting in Washington this week by a presidential bioethics commission. The meeting was triggered by the government’s apology last fall for federal doctors infecting prisoners and mental patients in Guatemala with syphilis 65 years ago.

U.S. officials also acknowledged there had been dozens of similar experiments in the United States -- studies that often involved making healthy people sick.

This ugly history of unethical human experimentation is not news to me.  American doctors conducted many studies using eugenically defined “undesirables”—convicts, disabled people, and the mentally ill—to test their scientific theories.  The AP article cited some horrific examples, which I’ll let you check out at your leisure.

Strikingly, though it was never considered particularly outrageous, once it was considered eccentric:

Prisoners have long been victimized for the sake of science. In 1915, the U.S. government’s Dr. Joseph Goldberger - today remembered as a public health hero - recruited Mississippi inmates to go on special rations to prove his theory that the painful illness pellagra was caused by a dietary deficiency. (The men were offered pardons for their participation.)

But studies using prisoners were uncommon in the first few decades of the 20th century, and usually performed by researchers considered eccentric even by the standards of the day. One was Dr. L.L. Stanley, resident physician at San Quentin prison in California, who around 1920 attempted to treat older, “devitalized men” by implanting in them testicles from livestock and from recently executed convicts.

Newspapers wrote about Stanley’s experiments, but the lack of outrage is striking.

I suspect eugenics theories made it more socially acceptable here, just as it did in Germany.  However, there’s a chance that it is NOT over—perhaps these unethical activities have simply been moved off shore to target different vulnerable populations:

Last year, the U.S. Department of Health and Human Services’ inspector general reported that between 40 and 65 percent of clinical studies of federally regulated medical products were done in other countries in 2008, and that proportion probably has grown. The report also noted that U.S. regulators inspected fewer than 1 percent of foreign clinical trial sites.

Monitoring research is complicated, and rules that are too rigid could slow new drug development. But it’s often hard to get information on international trials, sometimes because of missing records and a paucity of audits, said Dr. Kevin Schulman, a Duke University professor of medicine who has written on the ethics of international studies.

So now President Obama has ordered an investigation.  Has research ethics really progressed?  Or is it just that society has progressed enough to express the outrage that’s due?

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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.

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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.

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The Bureaucratic Failing

  • Posted on February 11, 2011 at 8:26 PM

Human societies have this nasty habit of needing something long before they figure out how to meet that need.  The need creates the motivation to fulfill that need, which, by necessity, means we hurt until that need is filled.  The hurt grows until it motivates us to develop the means to meet the need.  This is a natural, normal process which has led to a great deal of human progress.

Bureaucracy is one socio-technological system we’ve devised to meet certain needs, mostly related to managing the volume of work created by our massive societies.  In theory, bureaucracy is efficient.  In reality, bureaucracy often sacrifices effectiveness for efficiency by divorcing decisions from reality.

Consider health care:  Many of us believe health care is a basic human right.  From a social justice perspective, I would agree.  It is unjust to have health care and not to disperse it to the whole population.  From a more pragmatic perspective, the idea is problematic.  The freedom of speech, the freedom of ideas, the freedom of association—these are basic human rights.  Health care cannot be a basic human right any more than food or education can be a basic human right.  You see, from a pragmatic perspective, the freedom to communicate, share ideas, and choose with whom we associate requires others not to hinder us.  Whereas, the supposed rights to health care, food and education requires others to provide for us.  These are two very different concepts.  On the one hand, the freedom to communicate would best be described as a right we naturally have unless we are deprived of that right.  Whereas, health care would be best described as an entitlement we’d like to claim.

Furthermore, providing these entitlements require us to be technologically advanced enough to develop systems that can effectively provide these goods and services.  No such systems exist.  We have health care systems, but they do not provide health care goods and services to everyone.  We have food systems, but they do not provide food to everyone.  We have educational systems, but they do not provide education to everyone.

To help compensate for the lack of an effective system, we use bureaucracies to allocate limited resources.  These bureaucracies choose who gets what goods and services.  Currently, our health care system relies on a hodge-podge of bureaucracies with different goals.  There are federal bureaucracies that regulate the resources themselves—further limiting the resources that are available in attempt to ensure those resources are safe for use.  There are federal and state bureaucracies that provide limited resources.  There are private bureaucracies that provide limited resources for profit.  There are private bureaucracies that provide limited resources without the pursuit of profit.  There are federal and state bureaucracies that distribute access to the limited resources that are available.  There are private bureaucracies which distribute access to the limited resources that are available for profit.  There are private bureaucracies which distribute access to the limited resources that are available without the pursuit of profit.  In effect, these bureaucracies are often at cross-purposes and make a mess of things.

These cross-purposes make a mess of things all by themselves.  This mess is exacerbated by the fact that the nature of a bureaucracy often sacrifices effectiveness for efficiency by divorcing decisions from reality.  You see, in a bureaucratic system you have someone sitting at a desk with a piece of paper or information on a computer screen.  That person has to make a decision based on that information.  This person makes hundreds of decisions like this a day.  It’s a job.  It can be a tedious and thankless job.  That decision is influenced or dictated by decisions made by other people sitting at other desks.  None of those people are connected to the provider or the recipient.  The decision is divorced from reality.  For the decision maker, the significance of the decision resides in how it will affect the person’s job, not in how it will impact the provider or the recipient.  The real impact of the decision is unknown and unimportant to the person responsible for making it.

That is our system.  That will remain our system after Obamacare is enacted.  To solve our problems, we need new systems that can supply the entitlements we’re demanding.  Obamacare doesn’t do that.  Right now, we lack the technological sophistication to do that.  In the meantime, while we’re waiting and hurting for the progress that will make that possible, to satisfy the requirements of social justice, we need to dismantle the broken systems and replace it with systems designed to meet the needs to the best of our abilities.  Obamacare doesn’t do that.  The system itself is broken and Obamacare adds layers of bureaucracy to a system already broken by bureaucracy.  Bureaucracy is the best we can do, because we haven’t devised something better.  But Obamacare is not the best we can do.  Obamacare complicatedly adds more cross-purposes, not fewer.  Obamacare further divorces decision makers from the people their decisions affect.  And, worse still, Obamacare turns the entitlement we want—that which we want to be provided—into a legal obligation we cannot avoid.  It gives more power to the government.  It takes away the freedom of choice—the choice not to pay into a broken system—and forces people to entrust their health care into the hands of bureaucrats who are, of a necessity, divorced from their reality.

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Bullying (Part 8): Bullying Differences – The Solution

  • Posted on November 12, 2010 at 12:00 PM

In my previous post, I discussed the problem.  It is my opinion (it would by a hypothesis if I had the means and training to test it), that much of bullying based on prejudice stems from systemic flaw:  A “foreign” element is introduced into an environment that is perceived to be homogenous without the people within the environment having the skills to cope with the disturbance.  (This intentionally excludes the harassment and abuse that stems from prejudice, which involves much more violent intentions and, presumably, must stronger feelings and weaker morals.)

Two things stand out to me in this statement.  First, it is based on perception.  A group is perceived to be homogenous, and the “foreign element” is perceived to not fit within that homogenous group.  The reality is that we’re all different.  Homogenous groups are a matter of perception, not reality; thus if we change the perception of those individuals within the group and open their minds to the differences that already exist within the seemingly homogenous group, then I expect “new” differences would seem less threatening—after all, they’ve already worked with people who are different, they just were not aware of all the differences.  Second, the people within the seemingly homogenous group lack the skills to cope with other differences.  I believe both are cultural problems, or problems that have been culturally reinforced.

Rugged Individualism is a standard concept in American culture.  We cherish our individuality, or so it’s claimed.  But, personally, I’ve never really understood that claim.  The American Melting Pot isn’t about difference, but about sameness and integration.  While we are a nation of immigrants, those immigrants are expected to conform.  The individuals raised in public education are taught to conform.  Conformity and homogeneity are prized values that make our social system run; yet, our beliefs in freedom are in direct conflict with those values of conformity and homogeneity.  Instead of addressing that conflict and finding a harmonious way to create a nation based on diversity, we convince ourselves we’re “rugged individualists” despite the evidence to the contrary.

Difference is bad.  We fight differences.  We try to find a way, either by forcing “foreign elements” to change or by tricking ourselves that differences aren’t real.  We want to think everyone is the same or should be the same.  But equality, the value we espouse, isn’t about sameness; it’s about rights, opportunities and responsibilities.

Recently, Dave Hingsburger addressed a related topic:

Why do I mention disability so much in my workshop? Cause I want to say, ‘but ya are Blanche, ya are!’ Difference, Diversity, Disability ... all part of the vastness of the social world, all part of the vastness of the human experience, all part of the whole community. Difference, Diversity, Disability ... we make community and the community would be less without us. Difference, Diversity, Disability ... we bring with us challenge and demand for change, just like every single other member of every single other community. We are the same in what we want, but we are proudly different of who we are when asking.

We shouldn’t have to hide our differences or whisper about them in dark corners.  The differences are real, and we’re all richer for it—if we’d just let ourselves be.

I believe that if we can bring our differences to the conscious level—if we can look at them and see them for what they are—then maybe we could see them without regarding them as a threat.  Instead, as a society, we try not to see them.  We ignore them whenever and however we can.  And when we can’t, we fight them, disparage them, and exclude those who force us to look at them.

We need to be able to deal with differences.  We need to be able to see them, to cope with them, to tolerate them, and to accept them.  We need to be able to work together—in our communities and in our workplaces—without being threatened by the diversity that is all around us.

And our society—our school systems and our social values—have failed us in this regard.  But awareness is rising and changes are demanded from many groups and many sectors.  Changes are happening.  Diversity training is part of that change.  It is, when done effectively, a very important part of that change.

And yet we resist.  Because so many of us don’t want to have to change.  I mean, why should we change?  Really?  Can’t he just stop wearing glasses?

For so long, our society has relied on changing those who were different or hiding and excluding those they could not change.  But that solution won’t be tolerated any more.  Instead, we must brave face our differences and find it within ourselves to embrace them.  After all, those differences are in each and every one of us.  If we could only let ourselves see them.

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Bullying (Part 7): Bullying Differences – The Problem

  • Posted on November 8, 2010 at 7:13 PM

One of the things that spurred my series on bullying—before the news decided that bullying was a hot issue and before I realized October was Bullying Awareness month—was a post written by Clay.

The post is about some of the challenges that autistic adults face in the working world, specifically some of the challenges Clay has faced as a working adult on the spectrum.  Among those challenges is workplace bullying and harassment.  In the comments, he said:

It does take a lot of inner strength to persevere against those who would ‘take you down’, just for the hell of it.

My response was:

For some, I’m sure it’s accurate to say they would “take you down, just for the hell of it.” For many, it is a coping mechanism. People they don’t understand seem elevated—the mystery itself is intolerable—so, they do what they can to depreciate that person, because they think that makes the person understandable. I’m not saying it’s logical or it makes sense, but that’s the way sociologists and psychologists describe the behavior. Of course, as someone who was picked on throughout childhood, I never found their feelings of inferiority very consoling, even in retrospect. But what I do take from that is that it is important to share knowledge to change behavior—if people who are different could still be different, but also be more understandable, that would presumably help those people to cope with that difference without resorting to physical or emotional violence.

Clay said:

I thought it was just for the hell of it, but now I think I want to know more about that coping mechanism thing. Sometimes, I had thought that some people were jealous, but couldn’t understand why. Please, make this a topic for your blog.

I went the long way around to get back to this, but I haven’t forgotten.

Common victims of bullying in the adult world are those who are different, particularly those who are different in a way that seems to make them less successful by social standards.  This measurement of success may be based on career goals, financial means, appearance, or just about any other standard.  Often the disadvantage of being bullied is even greater than the disadvantage(s) that hamper success; meaning that the bullying hampers success even more than the difference.

As is true for children, adults bully for two basic reasons:  1) because they enjoy it, and/or 2) as a coping mechanism.  In regards to bullying as a coping mechanism, some do it because they are being bullied (this is often true of bullying that pervades hierarchical organizations), but they may be coping with something else—such as prejudice, fear and misunderstanding. 

As I suggested to Clay, bullies within an organization or system who are bullying someone at the same level as them because of perceived differences may do so just “for the hell of it,” because they enjoy hurting others or enjoy the feeling of having power over others.  This enjoyment is both a human failing and a culturally reinforced trait.

However, that is not the only reason adults bully.  They also do so in order to cope with the sudden emergence of a foreign element in their environment.  Whether the difference is racial, gender, neurological, intellectual or ability, the bullies perceive the different individual as a threat (at least, on an instinctual level), and they respond with physical, emotional or verbal violence.  I’ve read theories (though I don’t know how strong the evidence that supports these theories are) that if these bullies were somehow de-sensitized to the differences, then they would not respond to those differences by bullying.

In short, opening up an organization to diversity creates an environment ripe for bullying; but by training individuals on diversity, equipping them to cope with and get past their discomfort with differences, and integrating diversity into the organizational system, the organization creates an environment ripe for mutual success.  Responsible businesses are pursuing this approach, often after failed attempts to open their organizations up to diversity without an effective means of transition.

Diversity training is often derided, but it is most often derided by people who falsely believe they work in a homogenous environment and are entitled to continue to work in their homogenous environment.  The foreign elements are supposed to conform to the environment or leave.

And that’s a problem, because diversity is far more real than the myth of homogeneity.  But homogeneity is reinforced by bullying.  The greater demand for fair workplaces without the proper training to make fair workplaces possible, the more bullying we’re likely to see.

I do recommend you read Clay’s post.  I also recommend you read this example of workplace bullying.  The bullying is very real.  It’s not something you just grow out of.

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Bullying (Part 6): Bullying in the Adult World

  • Posted on November 6, 2010 at 5:33 PM

One of the messages I’ve seen lately is that “it gets better.”  This message is coming from adults in relatively powerful positions who are shouting out to youth about the need to survive bullying.  On the surface, I have nothing against these messages.  Messages of hope are important.  Showing kids that adults have overcome bullying to attain societal significance are also important.

But, these messages are also skewed.  Even though these are anti-bullying messages, there is a bit of internalized “bullying is a rite of passage” in the messages.  The message implies that if you only live long enough to grow up, you’ll grow out of being bullied.

Growing up is not the solution to bullying.

The sad reality is that:  For some people it doesn’t get better.  Some people face bullying all their lives.  For some people the bullying actually gets worse as they get older.

In the adult world, bullying—and once again I’m distinguishing this from harassment or abuse—is alive and well.  Some adults who faced bullying as children continue to face bullying as adults, and often for the same reasons.  Some adults who faced little bullying as children wake up to a world that isn’t fair, to a world where the power of individuals or the power of organizations can be wielded to take away their rights, and they discover that those individuals or organizations are not above bullying to get their way.  Bullying is also used to reinforce status—it is institutionalized in organizational structures, in government, and in our society.  And, of course, bullying is still idolized or excused in the fiction written for adults and in the heroes we hold up as a standard for our own behavior.

Bullying doesn’t just stop.  Perhaps, if you’re like Joel Burns or President Obama, and you gain a position of power, you can turn the tables on bullying.  But few of us are Joel Burnses or President Obamas.  Few of us are CEOs or whatever it takes to rise sufficiently in status to be too high to be bullied.

Many of us get through adulthood with relatively little bullying.  Others suffer the effects of bullying almost every day of their lives.  Still others face it every single day, with no escape and no respite—but then again, that often goes beyond bullying.  I’m not sure what it is, denotatively speaking, because I don’t think we, as a society, want to acknowledge it happens.  Certainly it doesn’t happen here in the Land of the Free.  Certainly not.

But it does.  It happens.  Until we can look bullying in the eye, as adults, and see it for what it is, bullying wins.  Until we can look up and see bullying all around ourselves, pervading our society, bullying wins.  And as long as bullying wins, we can’t save the adult victims of bullying.  We can’t even save ourselves.  We certainly cannot save our children.

We need to open our eyes and see the bullying.  Maybe then we can stop it—not completely, but enough.  Maybe just seeing it is enough to start the change.

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Bullying (Part 5): Why Do Children Bully?

  • Posted on November 1, 2010 at 3:29 PM

After a few distractions, I’m back to the issue of bullying.  I started with a description of bullying, where I attempted to distinguish between bullying, harassment and abuse.  Then, I discussed boys bullying and girls bullying.  I left off with a thought for bullies, because it is my experience that many bullies are victims themselves.

Now, I would like to explore some of the other reasons for bullying.

Two Basic Reasons

There are two basic reasons children engage in bullying behavior: (1) to buoy the self-esteem of the bully, and (2) to sink the self-esteem of the victim.  These are two different, distinct motives.

Victims of bullying and abuse often need to boost their self-esteem.  There are many ways people attempt to do this.  One way, as I mentioned earlier, is to engage in bullying.  Those surrounding this individual—parents, teachers, other supportive adults, and their own peers—can help this person find productive ways to build self-esteem, and thus eliminate the need to bully.  It’s not always easy, especially when the abusive situations that trigger the need cannot be resolved, but it’s worth the effort.

Not all bullies are like that, though.  Not all bullies are needy children stuck in an unendurable situation they don’t know how to deal with.  Some kids bully for fun.  These people bully not to boost their own self-esteem, but because they like to witness the effects on others’ self-esteem.

In my lay opinion, I consider this behavior pathological.  Perhaps there is already a psychological diagnosis for this kind of behavior, but I suspect our society is too enamored and forgiving regarding bullying for this to be the case.  Disabilities and disorders, after all, are determined on the basis of what society considers normal or acceptable.  If being morally challenged isn’t pathological, why would bullying be so?

America Loves Bullies

The increase in bullying (or, perhaps, the increase in our attention on bullying) has been called “epidemic.”  And part of that epidemic is that bullying is an acceptable pastime in our culture. 

I would say most kids are good kids.  But not all kids are good.  Some kids are bad.  Kids who take pleasure in other peoples’ pain and suffering and inflict pain and suffering for the sake of their own fun are not good kids.  (If this behavior is pathological, however, that “badness” can be addressed and remedied, much like the bad behavior of addicts can be addressed by addressing their addiction.)

And yet we not only tolerate this behavior, there are forces in our culture that actually encourage it.  Bullying is celebrated in television, in movies, in music, in advertisements, in books and short stories and even in news articles.  Bullying pervades our culture.  Adults, kids, corporations, public organizations, and even non-profit organizations and civil rights movements engage in bullying because it works.  Not only does it work—meaning that bullying can help you achieve the results you want—but for those willing to take pleasure in other people’s suffering, it feels good.  It makes you feel powerful.  And that feeling is honest, if not true.  (You are exercising power, but the power wasn’t rightfully yours.)

So, What Can We Do?

For bullies that use this behavior as a coping mechanism, the “solution” is to discover why and to stop it, if possible, while providing the child with other coping mechanisms.  It’s not easy, but it is rather straightforward.

For bullies that use this behavior because they enjoy it or because they perceive bullying as the cultural norm, the “solution” is neither easy nor simple.  Assuming that we’re not going to get these kids in therapy any time soon, we can only do so much.  We can attempt to change the culture.  And that = HARD and LONG-TERM COMMITMENT.  There are those who have been making that effort and investing their time.  I applaud them, especially Bullying Stories.  The recent emphasis in the news is also a good thing, or it could be if less attention was paid to why the victims were bullied (i.e., the implication that bullying = homophobia) and more attention was paid to the fact that the problem isn’t new and that people with many kinds of differences are the victims of bullies.

We also have to be vigilant.  As parents (of the bully or the victim) and as “the village” (i.e., the bystanders), we have to notice bullying and we have to take steps to stop it.  We have to assert that these behaviors are not acceptable.  We have to acknowledge that bullying is not a rite of passage.  We have to allow our minds to acknowledge that bullying, harassment and abuse are different and that none of these behaviors are acceptable.

Next, to “prove” that bullying is not a rite of passage, as some claim, I will demonstrate that bullying continues on into the adult world.  And, as much as I appreciate Joel Burns willingness to speak out, I have to say, sometimes it doesn’t get better as you get older.  Sometimes it gets worse

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Statement of Values: Indiana Workers Recommend Dropping Kids

  • Posted on October 27, 2010 at 9:25 PM

Here’s another distraction from bullying:

Indiana’s budget crunch has become so severe that some state workers have suggested leaving severely disabled people at homeless shelters if they can't be cared for at home, parents and advocates said.

It’s all about the budget crunch.  No, really! 

Oh, wait…

But some families have been on waiting lists for waivers for 10 years. The lists contained more than 20,000 names last month, and one advocacy group predicted they will only grow longer because Gov. Mitch Daniels ordered budget cuts that have eliminated 2,000 waiver slots since July.

(emphasis added)

So, is it just me, or does that imply it’s not about the budget cuts at all?  Sure, the budget cuts are making for a longer waiting list because Governor Mitch Daniels doesn’t care enough to find another solution.  But, really?  Waiting 10 years for services.  And this is just becoming a problem now?  I don’t think so!

Budget cuts also have resulted in the state moving foster children with disabilities to a lower cost program that doesn't provide services for special needs and eliminating a grocery benefit for hundreds of developmentally disabled adults.

See, maybe it’s just me.  But I see this and I don’t start thinking, “Oh, Indiana must be really hard-up for cash!”  No, I start thinking that Indiana’s government doesn’t care about people with disabilities.  That—in Indiana—people with disabilities just aren’t worth spending money on.

Maybe it’s just me.  Or maybe…

Maybe environmentally-friendly roads are more important than people with disabilities.

Or maybe holding onto their cash is more important than people with disabilities.

Maybe the election season is just too damned important to give the people of Indiana the services they need to survive.

Some parents said homeless shelters have also been suggested - or threatened - as an option by private care providers.

Daunna Minnich of Bloomington said Indiana Department of Education funding for residential treatment for her 18-year-old daughter, Sabrina, is due to run out Sunday. She said officials at Damar Services Inc. of Indianapolis told her during a meeting that unless she took Sabrina home with her, the agency would drop the teen off at a homeless shelter.

Sabrina, who’s bipolar and has anxiety attacks, has attempted suicide, run away during home visits and threatened her older sister, Minnich said. Bringing Sabrina home isn’t a viable option, but the two group home placements BDDS offered weren't appropriate, she said.

“I don't want to see the state of Indiana hasten her demise by putting her in a one-size-fits-all solution that will drive her to desperate acts,” Minnich said.

Jim Dalton, Dama’s chief operating officer, said he could not comment directly on any specific case but his nonprofit would never leave a client at a homeless shelter - even though it is caring for some for free after they got too old for school-funded services and haven’t yet been granted Medicaid waivers.

“We’re talking about youth that absolutely require services, and no one is willing to fund them anymore,” Dalton said.

(emphasis added)

Really, this isn’t about money, people.  It’s about value—or the lack of value Indiana officials see in people with disabilities.  It's government-sanctioned abuse.  And it’s got to stop!

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Offending Autism Speaks

  • Posted on October 26, 2010 at 2:16 AM

Okay, so I didn’t intend to take a break from my bullying series until I’d finished with it.  But, I think this is worth it.

For those who don’t know, I am a professional writer—a professional writer at the beginning of my career, but a professional writer nonetheless.  I write full-time.  I make money.  I have been professionally published.  I’m writing two novels and a non-fiction book, along with many other shorter projects.  I market my skills to local businesses (and sometimes not-so-local businesses) and I get paid well for my work.

My point is that I have many interests.  One of the interests I’m resurrecting, after years of studying business, is my fiction.  I’ve neglected my fiction sorely over the last decade of child-bearing, autism-diagnosing, and degree-getting.  Now it’s time for that passion to be re-born.

While I make some effort to keep my variety of interests separate, there is some overlap.  The main character of one of my novels is rather Aspie-ish.  (Though, I’m not going to call her an Aspie—if, for no other reason, then because she’s a fairy.)  My other novel, which is being co-written by a friend of mine, has strong “outsider” themes.  My non-fiction book melds my interests in autism and business and confronts one point where those interests overlap.

Then, there are other, less pleasant, intersections.

I receive many newsletters for writers, including Writing World.  I scan the articles and choose which ones I’ll read in detail.  One I chose to read in detail was about dark fiction markets, written by C. M. Saunders.  This article recommended The Dark Fiction Spotlight as a token-paying market that publishes dark fiction.  So, I checked it out.  As I was scanning pages on the website I found a sub-tab called “Anthology for Autism.” 

Hmm, I thought.  Now, that could be cool!  I have an idea of for a short story that is both dark, science fiction and involving an autistic main character.  The story isn’t written; it’s one of many projects that has been postponed due to time-constraints.  But, I figured if there’s actually a market for it…

So, I started reading about this anthology, and it starts with:

About Autism Speaks:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Oh, dear.  It didn’t look quite so promising any more.  But, I kept reading.  Maybe they’re open-minded.  But, then…

I repeat:

Anything that will offend Autism Speaks will offend me and will not be considered.

Honestly, my story would definitely offend Autism Speaks.  And, frankly, I wouldn’t have it any other way.  I remember trying to interview someone at Autism Speaks once.  It didn’t go well.  It wasn’t even an advocacy piece, but that didn’t matter.  Even a piece designed to inform parents of their information options offended the Autism Speaks representative I spoke with.  They were only willing to participate if they had full control over what I wrote, which is an ethical no-no in the journalism world.

So, I took a break from my bullying series to warn my fellow speculative fiction writers and autism advocates that The Dark Fiction Spotlight or Lady Luck Publishing might not be publishers you want to patronize or write for.  As much as I hate to write off potential markets, I won’t be pursuing any opportunities with them.

* * *

For those who read this blog and don’t already know, this last part provides reasons why such an affiliation with Autism Speaks requires me to boycott this company and it’s zines.

In a sense, all of this is about bullying. 

Autism Speaks claims they exist to advocate for families with autism, but only 4% of the donations goes to those families.  They fund research, and one of their major projects seeks a way to diagnose autism in utero, which is a form of eugenics.

That is why I disagree with Autism Speaks’ agenda.  But that, in and of itself, does not warrant boycotting (though it is why I would not donate to their organization).

Autism Speaks goes even further than this.  Autism Speaks is an organization that intentionally spreads fear and despair.  They use advertisements that amount to hate speech against autistics.  They encourage parents to fantasize on camera about killing their autistic children, and use this as a reason why autistics should be eliminated from society.

They use “Autism Speaks” as their name to claim that they speak for autistics; they don’t.  Autistics can and do speak for themselves, like these protesters.  On the site for the anthology, there’s this branding slogan: “Autism Speaks. It’s time to listen.”  Autistics, in return, says: “Autism Speaks needs to listen.”  Instead, Autism Speaks actively tries to silence those not in agreement with their eugenics agenda.

If this wasn’t bad enough, they engage in unethical business practices.  They mislead donors as they raise funds for their research.  They try to control media elements, as they did when I tried to interview one of their representatives.  And they bully their way through politics and the social landscape.  Their message is clear:  If you don’t feel bad (or even homicidal) about having an autistic child, then there’s something wrong with you, because autism has stolen your child’s soul.  (Yes, the soul-stealing is paraphrased, but with their very words one of their representatives has used.)

As an organization, Autism Speaks is a bully—a well-funded, politically powerful bully that believes that eugenics is the solution to autism.  And that offends me.  They use their size and their wealth to attempt to stomp out disagreement.

And they create anthologies where one point of view is all that can be expressed, because they don’t want their audience to become aware of differing points of view.

That offends me.  Autism Speaks offends me.  As a business person who believes in ethical business practices and as a parent of three children with diagnoses of autism, Autism Speaks offends me.  And I cannot write honestly and not offend them in turn.

I wouldn’t change that even if I could.

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