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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.)

Soldiers & Disabilities

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

If you’ll recall, when the wars first got going, there was a significant amount of attention paid in the U.S. media to the needs of soldiers who had children with disabilities. Programs were created. Problems were solved. Families were taken care of while soldiers went off to war.

Now, as our soldiers are returning from those wars, there is a significant amount of attention being paid to the needs of soldiers who have acquired disabilities while in service to our country. Some of these disabilities are physical in nature. Others are psychological or mental-emotional in nature. Some are both. Programs are being created. Problems are being solved. Our soldiers are being taken care of.

One could easily argue that we, as a nation, don’t do enough for our soldiers. I agree, but that’s not my point.

Both times, people with disabilities and people who had children with disabilities, people in the general population, were hopeful that the experiences of these soldiers would translate to more awareness, more support, and more help for people with disabilities who are citizens but not soldiers. Both times, people have been woefully disappointed. Before now, I never got why these incidents of increased awareness were never generalized.

The public administration perspective, I’m learning, is a rather peculiar worldview. The way working with government agencies shapes ones outlook on the world and its programs is somewhat surprising. After a while, though, it makes sense. As I have interacted with my instructors and my fellow students, I’ve noticed that most of them, with very few exceptions, are far more invested in the PA worldview than I am. I’m not just an outsider looking in; I’m an outsider that is privy to a very intimate look at the worldview itself and how it is shaped.

Despite the natural efforts to pull me into the group, I am most definitely an outsider. My purposes for being in this program are different than the common purposes shared by most of my peers. I have never worked for a government organization and I don’t really intend to do so. That’s not why I’m in the program. I’m not getting this degree to further my career. I am here to learn how to (and how not to) design and build nonprofit organizations that work. This program does serve that purpose—I’m learning, especially with the addition of my independent studies, what I need to learn, even when I didn’t realize I needed to learn it. My unique perspective is also valued—I’m not being forced to conform (not that that works well with me anyway), nor am I being excluded. But I’m still an outsider. I don’t share their worldview, but I’m starting to understand it and even appreciate it.

From a PA perspective, meeting the needs of soldiers during the war helps us succeed in our war efforts. It may be a relatively small contribution, but these small contributions can add up to make a big difference. After the war, meeting the needs of soldiers is both a matter of duty and an investment in our ability to attract new soldiers for the next war or the next deployment. This forward-thinking focus is something I can appreciate; it shows that they recognize the impact their positive and negative actions have, which is very important. Unfortunately, that focus has side effects; the reason this attention to our soldiers’ needs is not generalized to the non-military public is because the attention isn’t really on the needs, but on the soldiers.

For example, there is an effort in our government to help soldiers (with disabilities or not, but especially those with disabilities) obtain government jobs. They’re given a priority in hiring and it’s not only legal, but the requirement to do so is written into our laws. It is considered very important to give qualified veterans an especially good opportunity to work for the federal government and to benefit from support services and training to qualify for a position and to benefit from advancement opportunities once a position is obtained. There is also an effort in our government to help people with disabilities in a similar fashion. They also enjoy certain privileges in hiring that aren’t available to the general public, and may even benefit from non-competitive hiring. BUT while the goals are similar and the methods are similar, the programs aren’t linked. I can find little or no evidence in the consciousness of this worldview that there is a clear and discernible interconnected relationship between these two programs. We have soldiers (with or without disabilities) and we have people with disabilities. There is no recognized overlap.

As an outsider, this is mindboggling. But as an outsider with an intimate view into how this worldview is formed and how it operates, it makes a “common sense.” I’m not saying that it makes sense; just that it makes the kind of sense “they” hold in common.

Our government recognizes that we do not treat our soldiers as we should, and they’re trying to do something to fix that. Our government recognizes that we do not treat people with disabilities as we should, and they’re trying to do something to fix that. But they see both groups as distinct, separate demographics. They treat them as distinct, separate demographics. They address their needs as distinct, separate demographics. And, in doing so, they miss the point. It seems to me that they’re so worried about missing the forest for the trees that they’ve failed to understand that the trees aren’t the forest. They don’t realize that they can “save” the forest without really helping the trees.

If you’ve ever wondered why…

  • Posted on December 15, 2014 at 10:00 AM

If you’ve ever wondered why I’m not satisfied with my local disability services…

If you’ve ever wondered why I’m motivated to create a nonprofit organization that is committed to enrichment, employment, and empowerment…

If you’ve ever wondered why I’m convinced change is necessary to provide my kids and other people just like them with what they need to participate fully in our society…

If you’ve ever wondered why a little is just not enough…

I got a letter in the mail addressed to Alex. It concerns the county program that is supposed to help him transition from high school to adult life. It is the program that is, literally, intended to integrate him into the community of our county. Alex was “placed on the waiting list according to the date of your referral.” He is the 244th person on this list. This means in approximately 10 years he will begin to receive services.

He just turned 15, so he won’t receive integration services until he is 25. I’ve been told educational services expire when he turns 22. Now, it may be that I’m just bad at math, but those numbers don’t really work for me.

The worst part of all is, unless there are positive changes, the program isn’t really designed to meet Alex’s needs. It’s not designed to meet anyone’s needs. It offers a menu of choices. It provides services. Keep reading the new posts this week to gain a better understanding of the difference.

The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

Happy Thanksgiving!

  • Posted on November 26, 2014 at 10:00 AM

Raising three children with autism can be quite challenging. Celebrating holidays with three children with autism—or even just one!—can be especially challenging. Over the years, our extended family has grown accustomed to the differences my children’s needs bring to the holiday season. Our family has adapted excellently and I know just how lucky we are for their support and accommodations.

Many families are not so lucky. Many families struggle with basic necessities and holidays can be especially trying. On the one hand, the expectation is that they must somehow access the mainstay traditions of the season, such as a turkey for Thanksgiving, whether their budgets allow it or not. I’ve been there and I know how trying and miserable that can be. On the other hand, parents can go through all the work to procure the ingredients and make the feast, only to find that their child(ren) with autism won’t touch the holiday meal. Instead, they want something that’s more familiar and comfortable. I’ve been there, too.

When spending the holidays with extended family, these complications can be further exacerbated. Grandparents, aunts, uncles, and cousins can do their best to love the children with disabilities in their family, but if they don’t understand the disability the child has and they don’t understand what the child needs to celebrate the holiday, it can spoil the event for everybody. I’ve been there, too; though, once again, I’m lucky to have an extended family that’s very understanding and accommodating, but it has taken work on all our parts to get there. It is important for everybody to understand and keep in mind that it is not the disability, per se, that spoils a family event; it is the lack of understanding and accommodation that makes the event unsuccessful. That seems to happen in families a lot, and the issue isn’t always a matter of disability, but I’ve found that if people are willing to put in the work to love, understand, and accept one another, then any event can be a success, whether you have little or much.

So, I want to express my gratitude that Willy will be joining my mom, my husband, and me for a traditional Thanksgiving dinner. And I want to express my gratitude that Alex and Ben will be able to enjoy the special family time of Thanksgiving without having to try any of the traditional foods. I’m thankful we have the choice and flexibility to ensure that our whole family can enjoy this holiday. And I’m especially thankful for the many holidays we have shared with our understanding and accommodating extended family.

Thank you all!

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.

Allegiant: A Critique

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

Veronica Roth wrote Divergent, Insurgent, and Allegiant. I watched the movie and then got the books and I blew through the first two, becoming far more immersed in the stories than I should have been considering that I had a business to run and course work to do, not to mention a family to nurture.

Then, very early in Allegiant, what I read felt like a punch in the gut. If you want to read the book and haven’t yet and don’t want any spoilers, then stop reading; if, however, you also have adverse reactions to “triggers,” then you might want to consider reading anyway. I promise I won’t give away the ending.

There comes a point when the main characters learn what “this” has all been about:

A few centuries ago, the government of this country became interested in enforcing certain desirable behaviors in its citizens. There had been studies that indicated that violent tendencies could be partially traced to a person’s genes—a gene called “the murder gene” was the first of these, but there were quite a few more, genetic predispositions toward cowardice, dishonesty, low intelligence—all the qualities, in other words, that ultimately contribute to a broken society.

…despite the peace and prosperity that had reigned in this country for nearly a century, it seemed advantageous to our ancestors to reduce the risk of these undesirable qualities showing up in our population by correcting them. In other words, by editing humanity.

Allegiant by Veronica Roth, pg. 121- 122, emphasis added

I literally became sick to my stomach when I read that. The feeling persisted until the end of the book. And I was disappointed, because nobody in the book realized that the problems they were facing were an inevitable product of the original decision to mess around with humanity’s genes.

See, my problem with all of this, with the whole big mess, is that NONE of the characters react to what has been done in a way that it deserves. They react to what these scientists are doing in their own present in a variety of ways, which I sympathize with because these behaviors also deserve a strong reaction. The story’s present is the primary concern, after all. I understand all that and think Roth does a fairly good job presenting the variety of reactions.

But at no point does anyone even stop to wonder if they had the right to do what they did or whether the proposed goal is worthy or good or justified. We’re talking about eugenics! And, despite the disastrous consequences, nobody steps up to say, “You know, maybe you shouldn’t have been messing with humanity’s genetics in the first place and should stop messing with them now for that reason, if for no other.”

I have to wonder if it occurred to Roth. Did she realize that she was writing about eugenics, the same pseudo-science that the Nazis used to “excuse” the Holocaust? Did she realize that there would be a revolt before the country engaged in any mass eugenics project? Did she know what she was talking about at all?

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.

A Request: Limits, Challenges, and Opportunities

  • Posted on August 20, 2014 at 10:00 AM

I’m currently working on a set of introductory guides that I would like to make available sometime in the relatively near future. These guides are intended to be less overwhelming and less prescriptive than most of the books I’ve encountered, as well as being decidedly shorter. At the same time, they’re intended to be more thorough and more comprehensive than many of the booklets and pamphlets I’ve encountered. I’m trying to produce a happy medium.

Each of these guides will introduce a form of disability (starting with those that I’m most familiar with and maybe staying within only those) to a generalized audience. On the one hand, I want it to be useful should a new parent or newly diagnosed individual pick one up. On the other hand, I want it to be something that can be handed out to co-workers and service providers as well. I want these guidelines to explain what a specific label—autism, for example—is and what it means for the people involved.

To this end, I would like to humbly request those of you who would be willing to do so to please share the limits, challenges, and opportunities that you have experienced as people with disabilities or have observed the people with disabilities in your lives experience.

If you’re willing to share, please leave a comment on this blog and I will contact you or you can contact me.

Thank you!

What’s Out There?

  • Posted on July 30, 2014 at 10:00 AM

Parents worry a lot about what it will be like when our children go out there, out into the world. For some, worries revolve around the violence and crime that permeates our world. For no reason, for no reason at all, a car could slam into a child and take that child from this world. Does it really matter if the road was slippery due to rain or snow? Does it really matter if the driver was tired or drunk? Does it really matter if the driver was in a get-away-car or going for a joy ride? What matters is that the child is gone and there’s no reason for it.

For some, worries revolve around society and the judgments society makes about individuals. For no reason, for no reason at all, a child can be harassed or bullied or killed. Does it really matter if the child is gay or straight? Does it matter if the child is typically developing or developmentally delayed? Does it matter if the child is autistic or crippled or seemingly normal? Does it matter if the child is black or white? What matters is that the child is hurt, scarred, or gone and there’s no reason for it.

For some, worries revolve around the child. For no reason, for no reason at all, a child can be sick or dying. Does it really matter if it’s leukemia or AIDS? Does it really matter if it’s epilepsy or traumatic brain injury? Does it matter if the disease is rare or common? Does it matter if it’s acquired or if the child was simply born that way? Does it matter if the life expectancy is a month or a year? What matters is that a child is hurting, growing weaker, slipping away, and then gone and there’s no reason for it.

I look out into the world and sometimes what I see terrifies me. I don’t want to go out there. I don’t want my children to go out there. And I honestly just don’t get it. There’s enough pain and suffering in this world that we can do absolutely nothing about! Why in the world would anyone want to bring more pain and suffering onto others by committing crimes, acts of violence, or acts of negligence?

I realize, logically, that these people aren’t thinking about other people. The man who drinks himself stupid and then gets behind the wheel isn’t thinking about the people he might hit along the way. He’s drowning some sorrow in booze and then thinking, if you can call it that, about getting home. The man who holds up the convenience store isn’t thinking about the people he’s robbing or the people he might hurt or kill in the process. He’s thinking about what he wants and the quickest way to get it. The kid who bullies another isn’t thinking about that other kid. He’s thinking about his own pain, his own inadequacies, his own need to feel better, superior, cooler, or whatever.

I think about other people. I think about my family, my friends, my neighbors, and the strangers that are around me. I look before I backup. I drive carefully and soberly. I don’t drive when I’m impaired. I’m cautious, careful, hardworking, and loving. In a moment, my world could be changed by someone who isn’t like me. In a moment, my child or my husband or I could be gone from this world. And so I worry. I try not to think about it, but I worry nonetheless.

Sometimes I wonder why parents like me, parents of children with autism, try so hard to get their children out there, out into the world. Sometimes I think we’d all be safer if we just stayed home whenever possible. Go to work, go to the store, go out to eat upon occasion, but stay home and stay safe as much as possible. But even that kind of safety is an illusion. What’s out there can come in here without warning.