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On Choice

  • Posted on January 19, 2015 at 10:00 AM

For some reason, I keep running into these same words, “I didn’t have a choice.” It’s cropped up so many times lately that I just have to comment. My point is simple: There’s always a choice!

Admittedly, we may have few choices, we may have bad choices, but nonetheless we always have a choice. Claiming anything else serves only two purposes: justification and disempowerment.

It started with a line in a book. “Remember this, you don’t have a choice.”

Except, even as that was said, the explanation belied the statement: Basically, the choice was to go along with the powerful but good person or fall into the hands of the powerful bad person. To avoid the latter, the powerful good person was willing to destroy the characters she was trying to save.

We are talking about a life-or-death choice, but it is nonetheless a choice. And, honestly, there are some things we, as human beings, need to be willing to die for. Today is a good day to take a moment and think about that.

Today is the day we honor Martin Luther King, Jr., one of the great American heroes. He became a hero, not be disavowing his choices, but by claiming his right to choose. And Martin Luther King, Jr. did choose and he chose well.

Faced with prejudice, Martin Luther King, Jr. chose open-heartedness. Faced with hatred, Martin Luther King, Jr. chose love. Faced with violence, Martin Luther King, Jr. chose peace. Faced with oppression, Martin Luther King, Jr. chose resistance. Faced with fear, Martin Luther King, Jr. chose compassion. Faced with anger, Martin Luther King, Jr. chose understanding.

These were not easy choices. They were inevitably life-and-death choices and Martin Luther King, Jr. chose what he did, knowing the example he was setting and the risks he was taking. He could have much more easily have said, “I have no choice.” He could have sat down, shut up, and lived long. If he had, he wouldn’t be a hero, because he wouldn’t have made a difference. He would have lived longer, but he would not have lived better.

Every time we say, “I have no choice,” we give our power to choose away to another. When we abdicate our responsibility to choose, we give up our ability to make a difference. Today, of all days, honor your right and your responsibility to choose. Don’t take the easy way. Do something that will make a difference.

On Charity, Social Work, and Public Administration

  • Posted on January 16, 2015 at 10:00 AM

It is the opinion of this writer that any time you make a generalization, you enter dangerous territory. Among other things, you risk making the totality of your point (which might be valid if it were better defined) null and void by a single, contradictory example.

[Enter James I. Charlton’s Nothing About Us Without Us from stage left]

In what must be considered poignantly illustrative of their perilous and degraded status, people with disabilities are significantly controlled by charity and social service institutions (broadly considered, private welfare agencies, asylums, and residential facilities). This is the case throughout the world, although charities are more prevalent in the United States and Europe.

Some might see that it is contradictory to point out that most people with disabilities do not have access to a safety net while at the same time criticizing charities and social service agencies. (p.93)

Charlton’s premise consists of a few main points:

  1. While charities and social service agencies (lumped together, falsely) do help some, they also create dependency.
  2. They contribute to the degradation and isolation of those they help, but taking care of clients whilst keeping them out of sight.
  3. If the problems they ameliorate were solved, the charities would cease to exist.
  4. Many of the people who do this work do so because, in the words of Billy Golfus, “Their game is about wanting to be in control of other peoples’ lives,” (p. 94).

First, charities are nonprofit organizations that gather donations from the public (through public and private grants, as well) in order to meet an organizational mission. These charities may hire social workers, but a social service agency is, almost by definition, a government organization, which also hires social workers. Lumping these very different kinds of organizations together as a single problem or as a collective is logically unsound, because they operate and function in very different ways for very different purposes.

Second, the unfortunate reality is that people who cannot support themselves are dependents. While much is done that encourages continued dependence, this is true across the entire strata of society, from families to international governments. If that is to change, then services need to be made available that contribute to independence. It’s a difference of paradigm and mission, not organizational or functional structure. A nonprofit that takes creating independence, or better yet interdependence, as its mission would still be classified as a charity or a social service agency, depending on whether it’s independent or governmental in nature.

Third, organizations with such a mission already exist, as a byproduct of the same attitudes and social changes that have made the DRM movement possible. There are organizations that have already made the transition from disempowering caretaker organizations to empowering education organizations.

 

Fourth, any organization that fails to adapt when its environment changes, dies. Those that try to keep the environment from changing inevitably fail and die. Only those that change survive. This is no less true of charities than of any other organization.

Fifth, there certainly are people who strive to exert control over others’ lives. Some gravitate towards social work. Some start charities. Some start businesses. Some start wars. Most just have kids. We live in a broken world full of such people and the rest of us just have to live with that, or change it.

Despite the fact that I can pull apart the argument on logical grounds, there is truth to what Charlton is saying, especially from the perspective of people who’ve been disempowered for most of their lives. If people are ill-prepared to take control of their own lives, then there are those who will try to withhold control from them. Again, most of these people are called parents. There’s a time for this, and there’s a time to let go. And it’s never easy knowing which time any given moment falls under. There is nothing inherently malevolent or oppressive about this, though there are certainly malevolent and oppressive people who engage in the behavior.

For me, the heart of the matter is something that Charlton would seemingly refute or ignore. Charity is, loosely translated, most properly equivalent to “brotherly love.” The word as it is used today is a deviation of the charity found in the King James Bible in 1 Corinthians 13, which states in verse 3, “And though I bestow all my goods to feed the poor, and though I give my body to be burned, and have not charity, it profiteth me nothing.” The whole of this chapter gives ample evidence that 1) giving and 2) serving are not charity, that charity is loving others in Christ-like fashion, and that these acts only do good when they are done in the spirit of true charity. As Charlton seems quite anti-religion, he might find it rather ironic that his observations are proof of the soundness of this part of Jesus Christ’s doctrine, at the very least.

Shortly after reading and getting wound up over this segment, I had a chat with a social worker who also happens to have learning and neurological disabilities. This person had been struggling for months at work, because of miscommunication resulting in part from her reluctance to disclose her own disability and in part from her co-workers’ apparent distinction between things-that-apply-to-clients and things-that-apply-to-coworkers. This isn’t the first time this issue has gotten in the way of her work, either.

Part of it is that Charlton’s not wrong in his observations, he’s just wrong to generalize those observations and apply them to two entire sectors in the global economy. Unfortunately, he’s right that most of the professionals operating in these sectors have been taught in ways that contribute to the very problems he’s cited. These are people who often don’t know better, in that they’ve never been clients. The people who have been clients tend to be marginalized, in part because they’re not taught how to counteract the forces that marginalize them. These issues are not particular to disabilities, but are holistic and systemic within both sectors.

My friend has been a client in almost every applicable way. She has had disabilities, presumably for her entire life, but has gone undiagnosed or underdiagnosed for most of her life. She grew up in extreme poverty and in an environment rife with abuse and neglect. She has been failed time and again by the systems that supposedly operate to protect and support people like her. She entered her profession to do better for others than was done for her. And she’s not alone. There are many, many like her all over the world, who have struggled against terrible odds, who have become professionals in either the nonprofit or public sector, and have chosen to do better for others. And Charlton’s rash generalization erases them all.

Disability Identification

  • Posted on January 9, 2015 at 10:00 AM

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.

 

 

(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

Standing Moderate

  • Posted on January 8, 2015 at 10:00 AM

Across the U.S., we’re being inundated with immoderate views. Recently, three men died instead of being taken into police custody. The issues are poignant: racism, police relations, recognition of authority, delegation of authority, and acceptability of subculture, to name a few. None of these issues usually appear on this blog.

I don’t write about racism or racial subcultures. But these events concern everyone, because the results of these events have included riots, public demonstrations, the assassination of police officers, and, of course, a whole lot of public commentary. Much of the latter involves individuals or organizations trying to use these “current events” to bolster their own positions by taking an immoderate stand for or against something pertaining to these tragedies.

I’ll take a stand, too. I believe people shouldn’t die because of their skin color. I believe police have a responsibility to protect themselves and others while on the job, because that is their job. I believe neither stand is the antithesis of the other.

There’s nothing extreme about my position; nonetheless, it’s controversial. One might assume that I believe the three men that died instead of being taken into police custody died because of their race. I don’t. In regards to the first two events, people came to these conclusions before the facts were made publicly available. They did so for two reasons: first, the media incited the public to believe that race was a factor in these events; and, second, people believed the claims purported in the media because they were inclined to believe them. Now that more facts have been made publicly available, the facts don’t seem to support the conclusions so many people reached directly after the incidents; yet, it’s easier for them to continue to believe in some great conspiratorial cover-up than to admit they were wrong. The truly sad and unfortunate part of this is that this country, this supposedly “free nation,” has a history of cover-ups just like the ones they suspect, so their positions aren’t implausible or even irrational. (In regards to the third incident, when you pull a gun on a police officer, you can expect to get shot—that’s what they’re trained to do!)

One might also assume that I think how the police handled these events was above reproach. I don’t. There is always room for reproach. But there is a difference between reproach and threatening their lives. There is a difference between reproach and rioting. There is most definitely a difference between reproach and assassinating random police officers. There is also a difference between reproach for its own sake and effective protests.

One person was sharing with me their take on the “die in” at the Mall of America. Yes, these people trespassed. Yes, they demonstrated on private property. Yes, it was disruptive. It was supposed to be disruptive. It was supposed to get attention. It was supposed to make the news! That’s what peaceful protest is all about!!! From everything I’ve read and everything I’ve heard, nobody got hurt, nobody was violent. They got their message across in a way we should be able to support.

Black lives matter. There’s nothing extreme about that statement. Police lives matter. There’s nothing extreme about that statement either. All lives matter. (Oddly enough, I’m told that that statement is very extreme. Go figure!)

Liberals, particularly extreme liberals, want to turn this—and have achieved some success in this regard—into a race war. Conservatives, particularly extreme conservatives, want to turn this—and have achieved some success in this regard—into a culture war. In the midst of these extremes, moderates (regardless of the way they lean) are most often silent; but, it’s not because they’re not talking, it because they’re drowned about by the loudness of the extremes.

We could all spend a lot of time pointing fingers and accomplishing nothing. For the most part, that’s what people have been doing. A riot will destroy lives and businesses, but it will go down in history and change nothing. Distorting the views of opponents, as many conservatives seem inclined to do, will create talk, sway the unwary, but will inevitably change nothing. We create change when we sit down, figure out what went wrong, and fix it.

That’s what moderates do. They try to find middle ground. They try to create solutions. They work with people who are different from them. They try to implement solutions. At least, that’s what they do when they have a chance to try.

This society that revolves so much around hits and likes and viewership doesn’t condone “moderacy.” In fact, “moderacy” isn’t even a recognized word. But immoderacy is. And that’s what we get, because that’s what bolsters ratings.

We don’t need ratings. We don’t need pundits. We don’t need riots. What we need are solutions.

Why Must There Be Two?

  • Posted on December 19, 2014 at 10:00 AM

I’m not sure if I’ve revealed the specifics yet, but I know I’ve reported my intention to start a nonprofit organization. In fact, I intend to start two from the very start. So, why, you might ask, must there be two?

The goal of both nonprofit organizations is to seriously improve the quality of life available to and experienced by people with neurological disabilities and/or differences, regardless of the severity of those disabilities and differences.

In order to do this, you have to proactively address two different spheres of influence: advocacy and service delivery.

On the one hand, you must work at the (inter)national level. You must raise understanding, awareness, and acceptance. You must advocate change. You must influence society. You must influence legislation. And you must cooperate with other disability organizations to accomplish all of this. This is the advocacy sphere.

On the other hand, you must work at the local level. You must provide opportunities for enrichment (building daily living skills, building social skills, building work skills, building household management skills, building business management skills, etc.) that meet the specific needs and goals of each individual. You must provide opportunities for employment (career planning, job hunting, business start-up, seed money, and job or business maintenance) that meet the specific needs and goals of each individual. You must also provide opportunities for empowerment (self-advocacy skills, issue advocacy skills, opportunities to advocate in the community, opportunities to advocate at home or with family, opportunities to advocate in the workplace, opportunities to advocate at the regional, national, or international levels) that meet the specific needs and goals of each individual. And you absolutely must have a way to navigate the various programs, services, and opportunities that are available in the local community so that the needs of each individual can be met and their goals can be achieved in a cost effective manner so the maximum number of people can be served with the resources available while still meeting quality standards. This is the service delivery sphere.

If you put these two spheres of activity together under the same organization, you’ll get an ineffective, inefficient organization. If, on the other hand, you have both spheres linked but separate, you can produce a powerful, driven set of organizations that meet the complex needs of people with neurological disabilities/differences in both areas that matter most. The (inter)national organization will actively advocate at the topmost levels of society; the local organization(s) will actively deliver the individualized services that are most desperately needed by people with neurological disabilities/differences. There will, of course, be overlap by design: the national organization will “seed” the local organizations, develop appropriate policies, and distribute the capital necessary to “plant” the organizations, while also holding functional local organizations to the conduct standards set in the organization’s charter; the local organizations will “feed” issues and problems to the national organization, which the national organization is responsible for addressing as the advocacy organization, and they will also develop the skills and provide the opportunities for volunteers/employees to move from the local to the national level.

I’ve been around enough to know that the way things are done for people in need—in the U.S. at least—has a tendency to function in such a way that creates dependence without really solving problems. A set of services are provided and people who need help can choose among the options that are available. If enough people have unmet needs after those selections are made, then a new service is created to meet those needs. But people aren’t individuals. Decisions are driven by statistics, metrics, and policy goals. The idea isn’t to help people; the idea is to help demographics. The result is that people aren’t really helped in a way that satisfies their needs, facilitates their goals, or solves their problems. This occurs, in part, because these decisions are made far away from the people who are actually in need, by policy makers operating at the national and state levels.

My goal is therefore two-fold. Create a system and processes that work by actually working with individuals with neurological disabilities and differences. The system and processes will be flexible enough to be individualized, but also knowledgeable enough to leverage available resources to provide as help as much as possible, yet independent enough to fill in the gaps as needed. This will transform the quality of life for the people I understand best and am most passionate about; yet, it will also create a model that can be used by other organizations (the national organization would facilitate this) in order to truly meet the needs of populations that my program is not designed to address.

Usually this kind of holistic solution-oriented service delivery is restricted to select localities. A few local areas work together to solve problems. These solutions become case studies that are offered to other communities. The process is replicated, though the same results are not always achieved because the solution-oriented spirit of the process is gutted from the service delivery design. My hope is that by combining the local impact with the national reach, I can change this. So, there has to be two organizations, inextricably linked, but independently functioning. There must be two.

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.

Generalizations

  • Posted on September 17, 2014 at 10:00 AM

So, a basic assumption of statistics is that you can create a framework, select a random sample, and produce survey results that are generalizable to the general population. This has been asserted as a fact in every attempt I have made to study statistics. This time around I’m admitting right off the bat that I don’t buy it.

Maybe it’s that I don’t understand where this “fact” came from and how they reached the conclusion that it’s true. More likely, it’s the “fact” that I am and always have been something of an “outlier.” You cannot talk to someone who has the same age as me, the same gender as me, the same race as me, and who is living in the same area as me and conclude that their views (the answers to the survey) can be generalized to me.

This assumption of generalizability leaves out far too much that is of personal significance:

  • Would she have children?
  • Would her children have disabilities?
  • Would those disabilities include autism, sensory processing disorder, and epilepsy?
  • Would her children be teenagers?
  • Would she have a disability?
  • Would that disability be fibromyalgia?
  • Would she own her own business?
  • Would she be going to graduate school?
  • Would she already have a graduate degree?
  • Would she have dabbled in politics long enough to become disgusted with our system?
  • Would she vote despite that disgust?
  • Would she make every effort to be an informed voter?
  • Would she have experienced life below the poverty line?
  • Would she have struggled to lift her family out of poverty?
  • Would she have experienced life as a married teen mother?

I could go on and on. The point, however, has been made. The things that shape my answers cannot be attributed to my race, my age, or my gender—at least, not exclusively. My experiences—who I am—shapes how I see the world. And that shapes my answers to surveys. While I may be an outlier, I’m pretty sure the same is true of everyone else and that those generalized factors aren’t the major determinants of their experiences.

How can we possibly generalize people based on random attributes when those attributes aren’t really what makes them who they are?

Part of me wonders if inequality based on age, race, and gender persist with such prevalence because our society, at its core, still believes that those attributes really do determine who and what we are.

It’s a Matter of Trust

  • Posted on September 10, 2014 at 10:00 AM

There are those who believe that people with autism, i.e. adults with autism who have the resources to self-advocate, should lead the discussions and decisions related to autism. Many of them have expressed it this belief as a matter of logic; others have expressed it as a matter of justice; and others have demanded it as their right. Those outside of these circles sometimes see this demand as self-advocates wanting to wrest the decision-making powers from parents and researchers and practitioners.

There is some truth to their claims on these powers, but there is also some untruth to these claims. With regards to researchers and practitioners, it’s a matter of scientific practice and scientific integrity. They want to control their own efforts, and they have a point in that regard; a scientist should not be forced to study something that does not interest him or her. Fortunately, the public doesn’t have to fund the objectionable research particular scientists may wish to engage in, but that doesn’t mean they won’t find funds elsewhere. But, for the moment, I’m not concerned with researchers or practitioners.

As a parent, I empathize with the position of parents. That position can easily be summarized: You don’t represent our children. Whether we’re talking about adults with autism or researchers and practitioners, the truth is that you do not represent our children, no matter how much you might want to do so. If our children are of age and have the necessary resources to self-advocate, then they can self-advocate and then we have to accept their rights to do so. If our children are not of age or cannot advocate for themselves, then we have the right and responsibility to advocate for them.

For some parents, it truly is a matter of power. Some parents continue to exercise excessive power over their children long after their children are able to engage in self-determination, self-advocacy, and self-fulfillment. They actively seek to deny their children the necessary resources to self-advocate in an attempt to maintain control of their children; they may also actively discourage self-advocacy. For the moment, I’m not concerned with them.

I’m concerned with the parents who advocate for their children because life has taught them that no one else will do so. I’m concerned with the parents who have been burned by school systems, medical facilities, and governing bodies. I’m concerned with the parents who know that their children’s interests are threatened and who stand up to speak out against those threats.

We will not let you advocate in the names of our children, because we don’t trust you. Our ability to trust has been damaged, assaulted, and betrayed. We’ve learned the hard way that “the system” doesn’t really protect our children’s interests unless we advocate for them. We recognize that you may be well-intentioned, but that doesn’t mean that you know what our children need. Furthermore, we recognize that you may not be well-intentioned; you may be self-serving and we know what serves you does not necessarily serve our children.

If you earn our trust, then we can cooperate with you and even collaborate with you. But we cannot step aside. We cannot leave the work for you to do. Our children need us to speak up. We cannot trust you to do so.

Is Peace Possible?

  • Posted on September 8, 2014 at 10:00 AM

Peace is an elusive concept in contemporary society. On the one hand, we fight wars abroad and we’re so comfortable in our lives that many seem to forget that we’ve been continuously at war for over a decade. On the other hand, we fight different kinds of wars on our streets—wars against immigrants, against drugs, against gangs, and against each other. If we had yet a third hand, we could count the verbal wars that take place in our political bodies, in our dialogues about significant matters, and even in our dialogues about trivial matters. And if we had yet a forth hand, we could count the wars that rage within each of us between what our conscience dictates and the weakness of our flesh—wars for our very souls. So, it seems self-evident that peace really isn’t possible.

There are powers within this world that would have us believe that is true, that peace isn’t possible; if we give up on peace, then we give those who want war power over us. Yet peace is a choice. We can make peace with ourselves, both between our spiritual potential and our earthly present. We can make peace with those we disagree with and even cooperate and collaborate with them. We can bridge the divides that separate us and make peace on our streets. We can even make peace in the world. So, contrary to the obvious, peace is possible.

The autism community is fractured. There is a side—a loud, squeaky-wheel, powerful side—that wants to do anything and everything to cure autism. There is a side—a loud, squeaky-wheel, growing side—that wants to do anything and everything to protect people with autism. There are various factions interspersed among these two sides that prove that our reality cannot be defined and delimited as a dichotomy. The autism community is at war.

There are some among us that will never choose peace. This is not due to their convictions that they are 100% right and the others are 100% wrong, as it may seem. It is because they want war, because they thrive on controversy, because they choose to grasp for power, to exert their control, to have their say, and to get their way. For some, war is a way of life, but these people are only a small percentage of the autism community. They succeed only because we let them.

Most of us want peace. We want cooperation. We want collaboration. We want things to get better. And we’re willing to work for it. But we feel overwhelmed and overwrought. It can be so hard simply getting through the day that we leave ourselves little energy for peacemaking. It seems easier to fight for the specific things we believe in and want than to make a peace that will provide those things. Besides, we have few contemporary examples on how to bridge such divisive issues into workable, cooperative, collaborative solutions. Is peace possible? Perhaps, perhaps not. The answer lies within us. We have to choose.

Labors of Love

  • Posted on September 1, 2014 at 10:00 AM

Today is Labor Day in the U.S. It’s the day we set aside to show our support for all the people who labor to make this country great, from the people who collect our trash (who don’t have to work today) to the people who sell us our cars (who do have to work today). The United States of America is founded on hard work and the principle of individuals receiving their due for their labor.

I get that. I appreciate all the people who spend their time laboring for their means. As one of these people, I know how important it is to get recognition for the work that we do. On the other hand, I remember what it was like when I was the stay-at-home parent. I was a mom. Aside from sporadic efforts to write a novel, a mom was all I was in most peoples’ eyes and people seemed to go out of their way to make me feel inadequate because that was all I did.

Recently, my husband was asked, “Do you work?” He replied, “I’m a stay-at-home dad to three kids with disabilities, so yeah, I work. I just don’t get paid for it.”

I think about people like my husband. I think about the people who would love to work, but who don’t have the opportunity, not because we’ve trashed our economy, but because they were never valued within that economy. I think about the recent divorcees who have kids to support and who have “no skills” because they’ve been stay-at-home parents for most of their adult lives. I think about the people who never got the chance to develop even the most basic work skills. I think about the people who slide through life, doing odd jobs, migrating from one place to another, homeless and seemingly helpless.

I think about how labor in this country has become such an “us vs. them” issue. I think of labor unions and glass ceilings and income gaps. I think about all we accomplish on a day-to-day basis and all we fail to accomplish after decades of government programs and special interest initiatives. I think about the state of this country and the state of this world.

I think about the book I have written, which tells my story, and the books I plan to write, which will share my ideas about how to remake all the things I’ve seen. I think about the myriad forms of diversity and I think about neurodiversity in particular. I think about how society weights people to determine who will get opportunities to pursue their dreams and how the weights are invariably against people who are “too different,” and I think about how people who are “too different” are often the sources of our most profound innovations.

I see a world in need of a new respect for labor—not the labor we celebrate today, but of the labors of love so many people engage in in so many different ways. I want to celebrate the hope that this world can be a better place for all of us. I want to celebrate the people who work so hard to make it happen.