On Why Pity Isn’t Charity

  • Posted on February 6, 2010 at 11:59 PM

Recently I had a discussion with an individual who described charity as giving that is motivated by pity, and used this definition in a Christian context.  I tried to explain to this individual why this was not the case.  Yet, this form of “charity” is so engrained in the American culture that she could not see the distinction I was making.  So, I’ll try here in hopes of being understood.

“Charity” as the word is used in the King James Bible is synonymous with Christian love.   Specifically, charity is defined as:

The highest, noblest, strongest kind of love, not merely affection; the pure love of Christ.  It is never used to denote alms or deeds or benevolence, although it may be a prompting motive.

Holy Bible, King James Version, 1979, published by The Church of Jesus Christ of Latter-Day Saints.

“Charity” when defined as Christian love is never pity.  Pity involves a sense of superiority:  when you pity someone, you look down on them and think they are somehow less than yourself; less fortunate, less talented, less valuable.  Less.

Matthew 25:34-40

Then shall the King say unto them on his right hand, Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world:

For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in:

Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.

Then shall the righteous answer him, saying, Lord, when saw we thee an hungered, and fed thee? Or thirsty, and gave thee drink?

When saw we thee a stranger, and too thee in? or naked, and clothed thee?

Or when saw we thee sick, or in prison, and came unto thee?

And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.

While “charity” is not used in the Bible as an action, if it were to be an action, then this would be the actions of which it would speak.  The phrase the least of these my brethren is misleading, apparently.  Some people associate it with pity, because if they are the least, then are they not less than us?  Jesus, who tells the parable, is NOT agreeing that those who are in need are, as so many perceive them, of less worth than those who give; He is comparing the least of these my brethren with a King and as brethren of the King.  Giving unto them is not an act of pity; it is an act of charity.  It is not done because you pity them and look down on them; it is done because you love them and feel compassion for them.

Compare this passage with the following hypothetical scenario:

A woman walks into the church with a Crockpot of hot, home-made soup.  She sets up her offering on the table and gets to work preparing the space for the homeless who will be coming in.  It is 5:30 and very cold outside.  The doors are locked, but she hears the shuffling of people on the outside.  The doors will open at 6, so they have to get busy to get everything ready.

At 6 pm, the pastor opens the door and the stiff, cold people wrapped in layers of poorly mended and unclean clothes shuffle in.  He lines the people up along the buffet so they each can get their dish, while the woman busies herself filling bowls with the hot, savory soup.  The gentleman next to her is putting together sandwiches, some turkey and some ham.

“It’s so sad,” the soup lady says to the sandwich guy.

“I know.  Everyone’s shivering.  We should have opened the door earlier,” the guy says.

These words startle the lady.  “But we weren’t ready yet.”

He smiles at the young man who just made it up to them.  The soup lady hands him a bowl, and prepares another.  The sandwich guy asks, “Would you like turkey or ham?”

“Ham, please,” he says in a gravelly voice that sounds like it doesn’t get much use.  The man takes one of the sandwiches heaping with ham, and asks him whether he’d like mayonnaise or mustard.  Before the young man can answer, the soup lady pipes in, “You see, it’s just so sad that all these poor people can’t find work.”

The young man’s cheeks color, but she doesn’t see him.  His gaze goes dark and his shoulders slouch.  He takes his sandwich and his soup, his milk and his apple, and even his little cookie into a far corner and eats in silence in the draftiest part of the church hall, while families and individuals gather under the blowing heat from the vents.

When everyone is served, the sandwich man tries to talk to him.  But the young man shakes his head.  “She don’t know,” he says.  “She don’t think.”

It’s not an accusation, but his voice is full of sorrow.  Neither of them will ever know that this man works twelve hours day, six days each week, working two back-breaking jobs.  The soup lady couldn’t imagine it.  Yet, he comes to the soup kitchen, because he doesn’t leave himself enough to have more than two meals a day.  Even working so hard, he cannot afford to because so much of that money he works so hard to earn has to go to his mother’s medical bills and his children’s tuition into the one private school that takes children with special needs.

The sandwich man tried to show love; the soup lady only felt pity.  Pity is not about love.  Pity is about making yourself feel better by exposing yourself to the misery of those who are so much worse off than you.  They’re not people; they’re certainly not brethren.

This is why I see pity as being the cousin to bullying, not to love.  Bullying is about making yourself feel better, too.  Instead of the passive harm you do to people when you pity them, you’re harming people actively, intentionally.  That’s the only difference I see between pity and bullying.  You’re harming people either way; you’re looking down on people either way.

Love isn’t about you.  Love is about giving yourself to others.  You may be called to give your heart or your time, your money or your ear.  But you are called to give.  Love—the pure love of Christ—is about recognizing the humanity in others and celebrating it.  You give not out of obligation, not because you feel sorry for them, but because you recognize their need and want to share yourself and your possessions with a fellow human being.  That’s charity.  Pity and charity should never be confused.

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Is Being “Morally Challenged” a Disability?

  • Posted on February 2, 2010 at 10:02 PM

Generally I consider myself pretty open-minded.  That being said, open-mindedness is not about lacking prejudice, but the willingness to re-evaluate and discard prejudices when faced with new information.  Prejudices and bias are natural human tendencies, resulting from our subjective perceptions and limited ability to process and extrapolate information from our environment.  Their naturalness, however, doesn’t justify acting on prejudice.  Thus, wrong is not in the holding of prejudices, but in the unwillingness to let them go and/or acting on the prejudices we hold in a way that harms others.  As we are subjected to new information, open-minded people re-evaluate and possibly change the prejudices they hold—but they’re still prejudices, because we never have all the pertinent information and never are able to filter that information we do have without bias.  For Christians, this statement would fall under:  “For all have sinned and all have fallen short of the glory of God.”  Thus is the imperfection of man while in this mortal coil.

Being open-minded does not prevent one from having strong, even near-immutable beliefs.  For me, one of these beliefs is the importance of ethical and moral behavior.  For clarification, I distinguish ethical beliefs as being wholly individual and moral beliefs as being those that are formed in conjunction with a socially recognized belief structure (often, but not exclusively, religious in nature).  For example, Catholicism is a moral belief system.  Ethical beliefs that are formed in conjunction with a belief in and adherence to the Catholic religion are moral beliefs.  In kind, science is a moral belief system, which can (but is not always) practiced with the adherence others give to religions.  Ethical beliefs that are formed in conjunction with a belief in and adherence to science are moral beliefs.  I care less what your morals are based on, and more on how highly you raise your standards and how much you strive to follow them.  Any belief system, when practiced with the requisite high standards and effort, makes you a beneficial force (though others may consider your standards and efforts misguided) unto the rest of humanity.  And that, for me, is the crux.  If your beliefs lead you toward benefiting others, then I would hold that your ethics are good; if your beliefs lead you toward self-gain at the expense of others, then I would hold that your ethics are bad.  Having good ethics, of course, is insufficient if you don’t strive to live by them.

So, one of my immutable or near-immutable beliefs is that everyone can choose to have high ethical standards and everyone can strive to live those standards.  For this reason, I have never held developmental disabilities or lack of sanity as a sufficient “excuse” to justify or explain away unethical behavior.  For example, I’ve always believed that a mass murder is no less responsible and no less punishable, just because he happens to be insane.  A man is no less responsible and no less punishable for raping another human being, just because he happens to be developmental delayed.

I have thought for quite a while that my ethical and moral standards were, well, immutable.  I couldn’t imagine any piece of information that would shake these beliefs.  Then, in reading from a textbook, I ran into two little words that carried a punch that knocked me off of my proverbial socks and high-horse all at once: morally challenged.

As I started this discussion, I said that I consider myself to be open-minded and this involves re-evaluating my prejudices when faced with new information.  Thus, when I ran into this statement I had to stop and re-evaluate my position:

Another key contributor to a person’s ethics and morality is his or her level of moral development.  Some workers are morally advanced, while others are morally challenged—a condition that often develops early in life.

The Fundamentals of Organizational Behavior, 4th ed., by Andrew J. DuBrin, 2007, pg. 75

Hm?  Moral deficiencies described in the language of disability.  You know, that makes a reasonable amount of logical sense—I can’t just dismiss it out of hand.  But, the implications (at least for me) are rather huge.  So, what to do?  Research!

From what I can gather, the above passage refer to (without actually discussing) Kohlberg’s Theory of Moral Reasoning, which I found in this link (it’s a PDF of a chapter from a textbook).  The link had the following table:

Moral Theory

 

 

 

 

 

 

 

 

 

 

 

 

 

It does not assert at which level someone would need to be at in order to be considered “morally challenged.”  I also found the following PowerPoint presentation online.  This explores how contemporary U.S. values (as they’re taught) are affecting society (psst, it’s not good!).

One thing the PowerPoint suggests, which I’m going to say flat out, is that it does not seem likely that contemporary U.S. society will come to see being “morally challenged” as a disability any time soon.  It seems, rather, that we encourage this state.  Yes, I know—you’re shocked (sarcastically speaking).

But if being morally challenged should rightfully be considered a form of developmental disability, which the above theory implies even if it were never explicitly stated, then should I not take that into consideration when I try to hold others to my standards of ethical development?  (I reiterate: this doesn’t mean I believe everyone should share my ethical and moral beliefs, but that they should develop postconventional moral reasoning skills and have high standards of ethical and moral behavior of their own).

To clarify, I do not believe that someone’s value or inherent worth should be subject to their intellectual development or capabilities.  Nor do I believe that someone’s value or inherent worth should be subject to their physical development or capabilities.  If moral development can be similarly hindered, impaired, or “capped”, then should I not extend the same sense of value to those who are morally challenged as I would to someone who his intellectually or physically challenged?  My instinctive reaction is NO!!!!  People who are morally impaired, but are not impaired in any other way have done this world great damage; they continue to do so.  I resist, on a strong emotional level, giving them any room for “excuses” like having a disability.

But, then my own ethics kick in.  Ethically speaking, part of the reason for not de-valuing someone with a disability is because having the disability is not their fault (this is only part of the reasoning; I’m not suggesting this is the best or most important reason).  If someone is morally challenged, and thus commits an immoral act, would it also be “not their fault?”  Not to mention (this is one of those much more important reasons) that, despite the harm they do, they still have inherent value as a fellow human being.

I’m torn.  I really am.  Emotionally, I find this “excuse” unacceptable.  Ethically and intellectually, I stand back and look at my reaction and see some of the same unreasonable prejudice flung at the friends and family I care so dearly for and write so much about.

Is being “morally challenged” a disability?  And how does the social model influence that?  Socially speaking, being morally challenged is an asset.  It lets people rationalize doing all sorts of things for the sake of self-interest.  Therefore, if the social model is exactly right, then being “morally challenged” isn’t a disability at all.  (Otherwise, I’m misunderstanding the implications of the social model, which is entirely possible.)  In fact, if the social model were to apply, then being morally developed would be the disability and all those unethical people should offer us accommodations to compensate for our lack of unethicalness.  Which, of course, is absurd on two counts:  1) I don’t want to gain advantages through mine or anyone else’s unethical behavior, which would include accommodations of this sort; 2) unethical people would not voluntarily offer accommodations of this sort and, were this line of thinking valid, ethical people would lack the power to enforce the accommodations on those uncooperative “unethicals.”

However, if there is something inherent about the state of being disabled, something that is exacerbated by the social model, then whether it is recognized as such or not being “morally challenged” would be a disability.  If so, then what does it mean?  Are people who are morally challenged fully culpable for their actions as is someone who is not morally challenged?  If not, then how would we measure that to determine what level of responsibility they hold?  Or am I simply taking a theoretical explanation of ethical behavior too far without enough evidence to justify the theory?

It’s times like these when I almost wished I was a prejudiced, unethical schmuck who could cling to my beliefs even after they’ve been legitimately questioned.  This re-evaluation process takes work, and it’s rarely simple.  Am I resisting this re-evaluation on a purely emotional level or is there a real flaw with my analysis thus far?  I don’t know, so I have to pick at it and put it out there.  It would be simpler if I just accepted that my prejudice was right and good, and left it at that.  But, then again, the sheer number of people who do that is one of the things that makes this world such a difficult place to live.

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The Relevance of Self-Efficacy

  • Posted on January 29, 2010 at 3:05 AM

Another thought spurred by my studies starts with this definition:

Self-efficacy refers to an individual’s convictions (or confidence) about his or her abilities to mobilize the motivation, cognitive resources, and course of action needed to successfully execute a specific task within a given context.

The Fundamentals of Organizational Behavior, 4th ed., by Andrew J. DuBrin, 2007, pg. 126

The chapter is on motivation, particularly as it is applied in work situations.  It relies heavily on psychology.  Two particular applications of this definition of self-efficacy stood out for me.

First, there is expectancy theory.  Basically with expectancy theory, the idea is that people will be highly motivated if they have high expectancy, high instrumentality, and high valence.  Expectancy involves the belief that more effort will improve performance.  Instrumentality involves the belief that improved performance will improve the outcome.  Valence involves the belief that the outcome is worth the effort.  If someone does not expect that their effort will improve their performance, they’re not likely to try harder.  If someone does not believe performance is instrumental in getting the results they want, they’re not likely to perform.  If someone does not value the outcome, they’re not likely to care enough to try.

(Realize that each of these high/low values are subjective, meaning they rely on individual belief not independent reality.  For example, trying harder may really lead to doing better, but if I don’t believe that it will, I’m not likely to try harder and so I won’t do better.  Therefore, belief is a very powerful, especially belief in oneself.)

One of the things that struck me as I was studying this concept was how it serves, at least in part, to explain some of the issues in relation to autism.  So often it is easier to assume someone with disabilities, especially cognitive disabilities, cannot do something.  This assumption is so easy that people often do not stop to question why they don’t do something.  It’s like the possibility that the individual does not choose to perform is never even considered.

The first time I ran smack into this concept was when I was concerned that Alex could not catch.  I understood, at least to some degree, the complexity of the catching action and its association with later skills development.  So, that Alex couldn’t catch was something that deserved attention.  Sitting with the physical therapist, I learned the distinction between can’t catch and doesn’t catch.  Specifically, if a child does not catch a ball, first you have to discern whether the child has any interest in the ball; if not, you must then find something the child does have an interest in.  Alex can rarely be induced to catch a ball, but if you throw a Veggie Tales plush toy at him he’ll probably catch it.  Unfortunately, the perspective of this therapist seems rather rare, but I’m certainly glad she shared it with me.

The next relevant way this concept of self-efficacy is used is in social learning theory.  Social learning theory is the process of learning through observing and mimicking others.  Many parents of young children with autism will recognize the significance of this, even if they’ve never heard the term.  It was drilled in me when the boys were young that children with autism have to be taught to mimic so that they can learn.  But, in looking closer at the concept through its business applications, once again the issues of expectancy theory come into play.  Expectancy (the belief that more effort will lead to improved performance), instrumentality (the belief that improved performance will lead to a better outcome), and valence (the level of desire for the outcome) are key aspects of social learning.  Some of the things that teachers and therapists are bent on teaching my children are of no interest to them.  The valence simply isn’t there.  Yet, if they watch me use the VCR or the computer, they pick those skills up quick.  And, yes, it is through social learning—observing and mimicking desired behaviors.

And now, we’re back to self-efficacy.  While the significance of instrumentality and valence cannot be ignored (yet seems to be ignored more often than not), when teaching people with autism self-efficacy has its own relevance.  Self-efficacy (belief in one’s own abilities) is a component of self-esteem (which also includes the person’s belief that he or she is worthy of happiness, also called self-respect).  Having fundamentally different neurological processes, and growing up learning in a million different ways (some subtle, some quite obvious) that your neurological processes are inferior, is going to affect any person’s self-efficacy and self-respect.  Yet, when attaining a new skill expectancy is essential, which requires self-efficacy.  If one has high self-efficacy, then one is more likely to believe that more effort will improve performance.  If one has low self-efficacy, then one is more likely to believe that more effort will not improve performance.  If one’s expectancy is low enough, then the individual will not even try to perform.

And it all comes back together.  If we insist on trying to teach people a task for which they have low instrumentality and/or low valence without first successfully raising their perceptions of instrumentality and/or valence—then claim that since they did not learn the task they must try harder or are incapable—we are eroding (and eventually destroying) that individual’s expectancy, self-efficacy, and self-esteem.  In the long-run, this erosion creates an environment of systemic disempowerment.  Essentially, we are teaching people they can’t, because we are trying to force them to learn something for which they have no interest and for which we create no sense of value.  That “can’t” attitude further pervades their lives.

The more I learn about “normal” psychology the more I believe that the worse thing psychologists ever did was divorce “abnormal” psychology from “normal” psychology.  I suspect if psychologists opened their minds to the possibility that the assumption that “abnormal = bad” is wrong, the more they would be able to see how “normal” psychology relates to their own ineffectiveness.  Perhaps then more people would get genuine help that repairs and re-builds their senses of expectancy, self-efficacy, and self-esteem, which would lead to improved performance on the behaviors they value.

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The Prevalence of “Normal”

  • Posted on January 25, 2010 at 10:25 AM

Studying business has been an interesting transgression from the vague plans I laid out for myself in childhood.  When I first decided to pursue business, I had very particular goals:

  1. Prove that “business ethics” didn’t have to be an oxymoron.
  2. Learn what I needed to know to be an effective business writer.

What I didn’t expect was that I would find myself immersed in a sense of normality that I recognized less and less as my classes unfolded.

In business, “normal” is not only dominant, but it’s everywhere—often at the complete exclusion of anything atypical.  It’s not just that “normal” is preferred; it’s that anything perceived as abnormal isn’t even acknowledged, or if acknowledge it is not explored.

People who live comfortably in this environment often perceive much of my life as abnormal, atypical, or different.  I say often, because some are not aware of the possibility, and therefore do not acknowledge it when they see it.  After all, I can “pass,” so I couldn’t really be abnormal, atypical, or all that different.  Right?

This is proving more and more of a struggle for me.  When I took psychology (early in my studies), I risked my grade (and thus my goals) by questioning the validity of some of the scientific principles we were being taught.  Psychology is a field I find troubling, because so much of it is based on the assumption that normality=good and abnormality=bad.  At least, much of the psychology I have been taught has held those assumptions dear and close.  And, I have to ask, can it really be “science” if such a fundamental assumption is made and not questioned?

After I made it through psychology with my grade intact, by the skin of my teeth as they say (do teeth have skin—I mean, really, what’s that about!), I breathed a great big sigh of relief and figured I was done with that.  I’m studying business, not psychology.  Now, I just have to laugh at my own naiveté—what a silly girl am I!

A fundamental concept/function of business is to manage; particularly it involves the management of people.  To understand how to manage people effectively, one has to understand how people behave and how one can induce the behaviors one would like to see.  In walks psychology, bold as brass (again, is brass bold, and how so if it is so?), to educate and inform.  Behavioral science, in particular, seems to be a favorite.  It’s in marketing, advertising, public relations, human resource management, organizational behavior, team development and management, strategic management, entrepreneurship, decision making, career development, and project management.  Basically, “normal” psychology pervades the vast majority of my core classes.  And each and everyone seem bent on ignoring the abnormal, atypical, and different.

“Oh, but they don’t, you see—we talk about diversity!”  Pah!  Yes, they talk about cultural diversity, racial diversity, sexual diversity, and generational diversity.  Yes, they do.  And, despite having taken a cultural diversity course; despite having discussed how these forms of diversity apply to marketing, advertising, public relations, human resource management, organizational behavior, team development and management, strategic management, entrepreneurship, decision making, career development, and project management; despite all this diversity-sensitive education—not one has prepared me to discuss mutual interests with the many people on the Internet without sounding, well, ignorant.  Yes, I know Britain, Canada, Australia, and everywhere else is different from the U.S.  Congratulations!  Welcome to the obvious.  And yet, the U.S. can be so very [insert your preference]-centric, these rather obvious distinctions are so often lost on people.

To butcher Shakespeare (because I can, not because I should):

There are more differences in heaven and earth, America,
Than are dreamt of in your diversity.

The business world assumes a sense of normality and conformity that does not exist, and yet wonders (or fails to wonder) why productivity is so much lower than it could be and competition is flooding in with us so unprepared.

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Autism Speaks in Congress

  • Posted on January 19, 2010 at 6:36 PM

Elizabeth Emken, the former Vice President for Government Relations at Autism Speaks, is running as one of six Republican candidates for California’s 11th Congressional District.  She is challenging incumbent Jerry McNerney, a Democrat who has held this seat since 2006.

While, generally speaking I am a conservative independent voter who enjoys seeing incumbents ousted from office—I’m the former Secretary on the Board of Directors for VOID, after all—I can’t offer the least bit of support for Ms. Emken.

Ms. Emken is using her business experience at IBM and her government relations experience through Autism Speaks to assert her qualifications for Congress.  Usually, I would consider both to be quality means of gaining experience to represent constituents on a national level.  But the political implications of Autism Speaks’ eugenic agenda are profound.  Supporting eugenics, even merely in theory, on a national level is a danger our country has already lived through.  Let’s not go back there!

If you live in California’s 11th Congressional district, please elect your representative carefully and consider the full implications of a candidate who proudly associates with an organization that promotes eugenics.

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A Look at What’s Going On

  • Posted on January 14, 2010 at 5:25 PM

First, I would like to add my support for the Autism Women’s Network.  Here’s a quick look at what you can find at this great new site:

  • First, note that this network is not exclusively for women or for those who are autistic.

 “AWN is dedicated to building a community of autistic females, their families, friends, and supporters who have a place where they can share their experiences amongst a diverse, inclusive, and supportive environment.”

  • Organized much like an e-zine, there are also articles of interest to AWN’s target audience.  Here is an excerpt from Amy Caraballo’s piece on Zakhquery Price:

“During a typical school day in October, Zak had a behavioral tantrum in class. It has been reported that while in mid-tantrum, he was cornered and “taken down” by school staff in an unspecified restraint technique. He fought back and allegedly caused insignificant injuries to the staff involved.”

  • AWN also offers a calendar of events, which lets us know about expected radio guests and other relevant events.
  • AWN provides a forums section, which includes forum areas like “Strategies for Daily Living,” “Advocacy,” and “Networking.”
  • There is a directory of prominent participants of the Autism Women’s Network and contact information.

Now, I would like to draw your attention to latest issue of Autism-Asperger’s Digest Magazine.  Not only are there some great articles in this issue, one is of personal interest to me!  A few that caught my eye right away follow:

“Like many of you, I’ve read articles and heard lectures on the importance of carefully choosing providers and selecting services for our children with autism.  I’ve walked away from doctors, and even a school because of what I’d learned.  I took charge of my children’s care and actively led every team involved.  Then, I learned how much damage one wrong provider could do.”

  • “Neurodiversity: A balanced Opinion” by Nick Dubin, Psy.D

“And that’s where the battle lines seem to be drawn: ‘High functioning’ autistics versus the parents of ‘low functioning’ autistics and various adults on the spectrum who also advocate for a cure.  What’s the solution?  Is there a solution?”

  • “Asperger’s Adults and the Court System” by Laura Larissa Scott

“My second court system interaction was much less pleasant, made more so, I believe, by the fact that I am an adult with Asperger’s Syndrome (AS).”

Please check this issue out if you can!

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The Child You Have

  • Posted on January 10, 2010 at 2:31 PM

Recently, my boys had the opportunity to mingle with four young men of long-term acquaintance.  At least once a year, our families get together for a Christmas celebration, and each year is an opportunity to assess the progress my children have made since our last Christmas gathering.  I was quite content with my children’s progress:  from Ben’s abundance of words to Alex finding comfort in crayons and finding a positive outlet for his energy; from Willy’s minimal meltdowns to Brandon’s lessened antagonism of Willy.  They’ve all come a long way in the past year.

This year, however, another thing struck me.  Suddenly, I saw something taken for granted that really shouldn’t be.  These four young men—ranging from two adults (one who has and one who will soon reach their majority) to two children near Willy’s age—are extraordinary in and of themselves.  Each of these boys has faced or continues to face exceptional medical conditions.  Some past and some present; some acute and some chronic.  Each of these medical challenges is enough to cause distress and upheaval.  Each of these medical challenges has been known to break families in a variety of ways.  Yet, while the families involved face the challenges and stress one might expect, none of them have even come close to breaking over them.  There’s no lamenting over not having a normal child.  There’s no wishing for a child to be something or someone he cannot be.

Each of these families has taken the child they have, embraced that child, and embraced the challenges of raising that child, continuing to nurture that child into adulthood.

Considering the families in question this doesn’t surprise me.  Yet, when I read what I do and when I hear what I’ve heard and when I see what I’ve seen, I have to stop for a moment in awe.  It seems so very many parents reject their child, because the child is not the person the parents’ expected or wanted.  From the simple things, like the dad who wanted his son to follow in his footsteps, or the mother who wanted her daughter to go to college instead of playing in a band.  To the much more challenging things, like the musician whose son is born without the ability to hear or the mother who will sacrifice anything and everything, including her child’s well-being, to fight autism and find a cure.  I’m faced with so many of these stories that sometimes it’s hard to remember that so many families face their challenges quietly, but with extreme love and patience.  While far too many families reject their child as unwanted or unexpected, there are so many families who go unsung who take the child they have and make their futures bright and true.  It’s important to take the time to celebrate these families who live their exceptional lives and make it good.

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The Year 2010

  • Posted on January 3, 2010 at 4:28 AM

In speculative fiction—science fiction and fantasy—the question to ask is often: What if?  Future times and round numbers are often points of fascination as writers look ahead to the many possibilities the future might hold.  2010 is a year that has been used in many stories to convey a near, but distant future in which great and remarkable changes have taken place in the world around us.  Yet, now the year 2010 is here.  The future is now.

I look back on the three decades of my life, and recognize that many fascinating changes have occurred.  From the fiction of Star Trek’s communicators to the reality of cell phones, iPods, and Blackberrys.  From the fictional black President that symbolized the end to racial prejudices and social injustices to the reality of President Obama lingers well beyond this symbolic happening.

What if? holds a desperate fascination for writers.  Yet, an equally important question always follows it:  How does this change cause more and different and worse problems?  A story, by its nature, requires conflict.  Humanity, by our nature, thrives in the face of and perpetuates conflict.  A time of peace and justice, however much we may long for it, may forever be out of our reach.  In Christian terms, man is fallen—imperfect and incapable of perfection.  In scientific terms, man is an accident—just another animal, if a bit more able and adept than our fellow creatures.  Neither vision promises much hope for a truly peaceful and just society here on Earth.  As we progress and develop, both technologically and socially, we find that we do make improvements on how our lives are lived.  We also find new ways to exert our destructive capacity on the world and its many inhabitants.  Each step forward opens new possibilities for hope-filled brightness and misery-causing darkness.  It is up to us to choose how we use the progress at our fingertips.

For me, the year 2010 will be a year of significant change.  Within a few short months I will graduate with my baccalaureate in Business Administration.  A little before or perhaps a little after that, I will launch my business writing business.  I will also seek to further my writing career by preparing materials for my first nonfiction book.  In the fall, I will start graduate school, seeking a certificate in Corporate Written Communications and following that with a graduate degree in Written Communications.  There are many opportunities before me and much work to do to achieve my goals.  Yet, as I start this year of opportunity, I cannot help but stop, breathe, and think that what I’d truly like for this year is something else entirely.

While the voices of people with autism, their families, and their friends have grown considerably louder and more influential over the last decade, there is still an imbalance in mainstream media representation.  Organizations like Autism Speaks typically garner more mainstream media attention than organizations like The Autistic Self Advocacy Network.  The word count, page space, and time allotted to the different perspectives on autism are unfairly distributed.  From a public relations perspective this is deeply concerning.  Yet, the truth is the voice of autistics and their allies have always been perceived as less significant and less worthy in the mainstream media.  In the last decade, great progress has been made to push those boundaries and to spread this “alternate” view through media outlets.  As I applaud this great accomplishment, still I find the reactions of the mainstream media inadequate in the face of the growing importance and long unrecognized significance of these voices.

Perhaps a perfect world, with justice enough for everyone, is beyond our reach.  Perhaps the shining ideals I cling to are mere dreams that can never fully come to pass.  But this much can happen:  For 2010, it is my hope and my wish to see this distribution of media attention distributed more fairly and evenly, so the true nature of the autism community, with all its complexities, is represented for the public to see, to read, and to hear.  Let the people decide for themselves what is right and good and true.  It is for this end that I intend to work, using my skills to achieve a greater space in the mainstream media for these “alternate” and underrepresented voices.

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The Family Connection

  • Posted on December 20, 2009 at 12:40 PM

After a long journey, overcoming many obstacles, my brother has graduated with a Bachelor of Science in Environmental Design – his next step is to get his Master’s Degree in Architecture.  I am so proud of my brother and so much wanted to show my support and pride that I traveled to Colorado to celebrate this great accomplishment and witness his commencement.

This was a big step for my family.  For the first time, my mother and I were gone for two days (including travel time), leaving Mark and the boys home.  For us, it was a trial period.  While my father and other family and friends made a weekend of this momentous occasion, my mother and I arrived the day before the commencement and left a mere three hours after the last ceremony.  It was a whirlwind trip – my first time on an airplane since I was a child.

Two things have come of this trip.  First, we now know my leaving for a short time will not cause a total meltdown of our lives, whether or not my mother is able to pick up the slack in my absence.  This is a great relief and a great accomplishment.  Two years ago this would not have been possible.  A single year ago this would not have been possible.  While I never really saw it as a sacrifice, I’ve skipped out on surgery and on trips to be there for my family.  And now, at last, my family has reached a point where if I have to go, they will be okay.  It’s a great feeling!  And this accomplishment—this milestone—paves the way for me to pursue my own dreams.  As a writer, I need to be able to give speeches and go to signings to make myself sufficiently available to my audience and sufficiently marketable to publishers.  For so long, this was not possible.  Now, it is.  The horizon stretches forth with golden light, and I’m so proud of my family and so joyous about the possibilities ahead.

The second thing that has come from this trip is a re-connection with family and friends.  While some family members have been able to travel to see us, my brother and father included, I haven’t seen most of my extended family in about a decade.  For some, it has been longer.  It was a joy to see my family.  I realized, despite the miles and the years of being disconnected, I have a place in my family.  More than just a space in the family tree, I am wanted and needed.  I have something to share and am someone they can share with – thoughts and dreams, hopes and ideas, skills and talents.  Together, we are more.

Somehow, I forgot that.  In many ways, raising three children with autism has made my world bigger.  Despite the stigma and the prejudice, the community of disabilities and the autism community are great “places” to be.  There are lots of wonderful people who I probably would never have met otherwise.  There is goodness and wholeness that many don’t see, because they’re never immersed in it.  I’m grateful that I have been.  And I’m grateful that I have a place here, and am needed and wanted here.

Yet, even as these experiences have opened and expanded my mind, my spirit, and my life, there have also been contractions in these areas.  It’s difficult for me to keep up with all I try to do, and there are many times where one more thing is just too much.  But through this trip I have learned that staying in touch with family and friends is not one of those things.  It’s “work” in the sense that it’s another thing to go on my overly long to-do list.  It’s time-consuming.  But the rewards are greater than the work; the value is greater than the time it takes.  I forgot that.  How could I forget that?

So, congratulations Patrick!  I’m so proud of you.  And thank you for a timely lesson in family connections!

 

(For those who may be concerned, I have gotten the medication I need to get well.  It’s still a work-in-progress, but I’m recovering from my illness.)

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Update: Illness, Snow Storms, and the Trouble of Exhaustion

  • Posted on December 10, 2009 at 4:14 AM

First, I was going to write about John Nash as portrayed through A Beautiful Mind (both the book and the movie) as well as some other literature.  Then, I was going to address the latest (before today) episode of Bones, and their portrayal of autism.  But, I’ve been sick.  I was sick all of last week, and despite having taken a full course of antibiotics, I’m still sick this week – better, but not well.

Sleep has thrust itself up as an unwelcome priority in my life.  Generally, I prefer to get about six to seven hours of sleep.  It’s adequate, without taking up too much time.  When I get four to five hours of sleep in a day, I tend to be sleep-deprived, which is not conducive to productivity.  If I get eight to nine hours of sleep, then I am not able to get all I “should” do done.  This last week I’ve been getting ten to fourteen hours of sleep a day and it’s not good.

Sure, it means I’m more likely to recover from this bugs that’s kicking my, well, you know.  But really, how important is health anyway!?!  Okay, so, yeah, that’s important, but…  I don’t like not getting things done!

So, my house is a mess.  My newly remodeled bathroom (with working pipes!) has yet to be refurnished.  I’m behind in my writing.  I’m way behind in my Purple Pen work.  I’m just barely keeping up with my homework.  And I haven’t blogged in over a week.  Oh and today is Alex’s birthday and I have yet to get his present.  To top it all off, my driveway is weighted down with about a foot of snow—which is, of course, not counting the end of the driveway, which has a good deal of the road’s snow on it, too.  And I’m still tired after twice as much sleep as I usually get in a day.

On the brighter side of things, shoveling snow is a great way to clear out congestion from the lungs.  Sure, it’s unpleasant, but getting that garbage out of there is what’s important, right?

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