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My Confession: I Have a Disability

  • Posted on October 29, 2014 at 9:56 AM

If you haven’t guessed by my blatant lack of posting, I’ve been having a hard time of it lately. I’ve been feeling like Job; except, I have conscience enough to feel guilty for feeling like Job, because I know Job had it way worse than I have got it. After all, Job’s miseries started with the loss of all of his children in a “freak” accident. Thankfully, all my children are alive and well.

It all started with a good thing. I decided to try Chantix to help me quit smoking once and for all. It worked for my uncle. It was working for my mom. I was ready to bite the proverbial bullet and have a go. I was warned that it might make me “a little more tired” and that it may cause some “vivid dreams.” These warnings did not prepare me for what was to come.

While on Chantix, I slept 18 to 20 hours a day. The worst part, though, was that I wasn’t even aware of how much I was sleeping because I had very vivid dreams that I was living my life, including turning in the assignments I’d promised to my clients.

This went on for two weeks before I accidentally missed a dose and I started to realize that things weren’t making much sense. I became suspicious—paranoid, really—and I decided to intentionally miss a dose. I was sick with headaches, nausea, and a pervasive dullness that made me want to crawl right back into bed, but I was also aware, with a growing sense of dread, that there was a distortion in my sense of reality.

So, right before my mom’s hip replacement surgery, I stopped taking Chantix altogether. I spent the day at the hospital, which is its own kind of misery. We had a bit of a scare (regarding the delay in my mom’s “recovery” period). Yet, I was able to stay awake and alert and conscious of my surrounding throughout the day. I committed myself to ‘ssessing out what’s what.

The next day, Tuesday, went by pretty quickly, as I needed to be there for both my mother and my children. But that evening I hunkered down to try to figure out what had really happened and what hadn’t. I had over 800 e-mail messages in my in-box. That freaked me out. I shut down my e-mail and went to my assignment folders. I couldn’t find any of the work that I remembered doing. I went back to my e-mail, sent off a frantic message to my co-author, and called it a night. Honestly, I just wasn’t up to facing the dreadful truth. I was hoping to wake up to discover that this was just a nightmare and everything was really just fine and dandy.

Wednesday morning my co-author and I had a Skype meeting and he gave me the nitty gritty from his end of things. I’d been gone for two weeks. He couldn’t get in touch with me via any of my known methods of contact. He’d honestly feared that I, and possibly my entire family, had died.

By then my e-mail in-box had over 900 messages (mostly spam). I tried to sort out the spam from the legitimate messages, got through about 400 messages (just sorting them), and sent off heartfelt, honest apologies to my clients. I then went upstairs, told my husband how thoroughly I’d messed up, and cried on his shoulder for a good 15 minutes before I was ready to face the music. I went back downstairs and started reading the messages I’d missed.

Despite the mess my business was in, life went on around me and there were many needs I had to meet. My mom was in the hospital until Friday; then, she was moved into a nursing home. The boys needed me, my mom needed me, and my clients were all very understanding. I struggled to get everything back under control, but my confidence was shattered. I’d messed up so thoroughly and, even though it wasn’t exactly my fault, it was definitely my failure. I felt it keenly.

Day after day I tried to manage everything I needed to do and everything I hadn’t done—and I failed. Day after day, I tried and I failed. Again. Again. Again. Again.

The stress exploded exponentially and I succumbed to a fibromyalgia flare up that floored me completely. Before the Chantix I’d gotten my daily, regular pain down to a 3 out of 10 (10 being bad). Now, I was at a 7 out of 10. (For context, my broken wrist, delivering my children, and my bouts with my gall bladder usually rang in at around an 8 out of 10.) My ability to concentrate was at a 2 out of 10 (10 being good). I just could not do my work. At all. I could barely meet the needs of my children and my mother. I could barely function. I felt even more like a failure.

Last Wednesday was my day. I woke up, got the boys off to school, and decided I could afford to take a nap. I overslept. Scrambled to get ready. Arrived late for the IEP I was going to duck out of early. Contributed nothing and left anyway. I scrambled to finish getting ready at my mom’s, but we just got later and later. We were supposed to leave by 2:30 PM. It was well after 3 PM when we actually left. I tried to make up the time as best as I could, because we were driving down to Chicago. This was going to be my night. This would turn everything around.

I was doing fairly well—just a bit late—when we ran into a major slowdown that suddenly became a parking lot. We waited for over a half an hour before things got moving and by then I was definitely late for my night. It was pass time for things to start when we got off the interstate, but I was determined to make an appearance anyway. This was my night!

I was going to my alma mater, except I drove right passed it because the building had been completely refaced and was now unrecognizable. I backtracked. My mom decided we could park; I didn’t need to take the extra time to try to drop her off in front of a building we couldn’t find. So, we parked in the underground parking area, right near an elevator which would take us up to the street. I unloaded her walker and we were off, albeit slowly.

I managed to find my school, about a block and half away, and we made it into the building and to the room where the event was taking place—just as people were leaving. I wormed my way forward to present myself to my former advisor. She got out the mic and got people’s attention. She introduced the award that was being given and then she introduced me, the recipient. I read an excerpt from the piece that had won me an award for overcoming adversity. I was able to read it without any anxiety, because, honestly, how much worse could it get? I watched the audience respond to my piece with gratification. Then, when I was done, the audience applauded. This was my moment. This was the moment when everything would magically turn around for me.

Except it didn’t. It started with the walk back to the car. We walked back much more slowly, for my mom’s sake. And it was during that long, slow, excruciating walk that I realized that the cramps I’d gotten from the long drive would not be worked out of my legs before I had to get back into the car and do it all over again. Once we were back on the interstate, we still had to swerve through endless miles of non-existent road construction, where miles and miles of the road were “under construction,” but there were only two areas (with many miles between them) where workers were actually working. As bad as that was, the worst was yet to come.

The “highlight” of the evening was our stop at the Road Ranger. Mom didn’t like to pay at the pump, so we went in to pre-pay. My legs were still cramped and my mom still had her walker, so the walk to the store was slow going. Mom pre-paid for the pump. We went to the rest room. We got some drinks and hot dogs. Then, we made the slow, painful way back to the pump. But the pump wouldn’t work. I walked back to the store and the clerk explained that our transaction had been canceled, because we took too long. I walked back and my mom elected to use her credit card to pay at the pump instead, because I really, really didn’t have to walk back to the store. So, I swiped the card through, made the appropriate selections, and set up the pump. The gas didn’t come. I waited and waited, but the gas didn’t come. So, I let go of the handle, turned back to the pump, and tried to see what was wrong now. Then, the gas started to flow and it started with so much force that the pump popped out of the gas tank. I turned just in time to be sprayed from head to toe with gasoline—mostly in my face and all over my skirt.

I stomped back to the store and reported the incident to the clerk. She just blinked at me. I stomped into the rest room, cleaned myself up as best I could, but I still reeked of gasoline. I stomped back to the car and did the only I could. I popped the trunk, threw my coat and my skirt into the trunk, slammed it shut, and put on the trench coat I’d lent to my mom. The shirt I was wearing was a tunic, long enough that some people—but definitely not me!—might wear it as a dress, so this wasn’t quite as “revealing” as it might sound.

Finally, I got into the car and was prepared to drive away and never, ever come to a Road Ranger again. But my mom said she wanted her receipt. So, I drove her up to the store and got out her walker and let her go in by herself. She came out a little while later, saying that not only did the clerk say that I must have “done it wrong,” as if I hadn’t been pumping gas without incident since I was fifteen, but also claiming that she’d already given me the receipt. My mom told me to come in with her so she could get her receipt.

“Mom, I’m not wearing any pants!”

And that was that. We drove away. When I’d finally gotten us into my mom’s garage it hurt to get out of the car, because my sweaty skin had stuck like glue to my mom’s leather seat. I limped to the other side, helped my mom get out and up into her house. Then, I changed back into the clothes I’d worn for the IEP and I went home.

The days that followed didn’t get better, because the sinus infection I had had become full-blown bronchitis, and got progressively worse. My productivity went from being negligible to be nothing at all. And I was angry. I was angrier than I had been in a long time. As a person of faith, I’d been praying this whole time for some help—divine intervention. The Bible tells us that God answers such prayers. My prayers were being answered with silence and I was angry. I’d had enough. I couldn’t take it anymore and I couldn’t do it anymore and I was done. I was DONE. I QUIT. And if God wanted to change that He’d have to do something big.

But we develop routines for a reason—at least, the ones we develop on purpose—so, the next morning I did my prayer journaling, grudgingly, then I did my independent studies. And, while my anger and resentment didn’t evaporate, I realized something. There was that nagging voice saying, “Of course you couldn’t take it, of course you couldn’t do it, of course you should quit...” And I finally stopped long enough to examine why.

I am a person with a disability. And as long as I’ve lived I’ve heard that people with disabilities can’t… It doesn’t matter what it is, there’s always somebody saying that a person with a disability can’t do it, or can’t do it well, or can’t do it enough, and shouldn’t try to do it at all. And for as long as I’ve been aware of the disability rights movement I’ve been fighting this kind of stereotyping. I’ve been fighting the oppression that says that a disability—any kind of disability—dictates what we can and cannot do. Each of us has things that we can do, things that we can’t do, and things that we cannot do very well but might enjoy doing anyway. Disability doesn’t change that. I know this. I believe this! I fight for the world to see this!

But it doesn’t save me from that subtle and not-so-subtle voice I’ve heard all my life.

So, here is my confession: I am a person with a disability and I gave up—just for a day—for no better reason than that I believed that, because I am a person with a disability, I couldn’t do it. But I won’t live my life like that—that’s really something I just can’t do.

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.

Is It Just Me?

  • Posted on September 15, 2014 at 8:56 PM

eBooks are the way of the present and will, I’m told, become more prevalent in the future. There are a lot of reasons why authors are particularly eager for the acceptance of the ebook. It allows them to reach out directly to their readers. As a writer, I share their enthusiasm—until I have to read one.

A friend of mine wrote a novel and published it as an ebook. I bought the ebook and began to read it, got frustrated, and then distracted. There was nothing wrong with the story. For as long as I could forget the screen, I could get into the story. Then it would be time to “turn” the page. It made it all-too-easy to put it down.

That was before my diagnosis of fibromyalgia, which means it was before I started to have to really think about what encourages my own productivity. Recently, I had two ebooks I was supposed to read for my course work. I tried and failed. I literally could not get past the first page.

One of the reasons for my failure is that the system wasn’t user friendly. The publisher who made the book available as an ebook clearly cared more about protecting copyright than they did about the readability of their ebooks. For example, I couldn’t access the ebook via my Kindle. I had to zoom in to see an eighth of the page at a time to read the thin, gray text. Every time I tried to scroll to a different part of the page, it reset me to the top of the page. It was a “horrid unpleasant” experience.

Another reason for my failure was that, inconvenience aside, I couldn’t concentrate on the text in this format. This is kind of peculiar, because I read text online all the time. I realized, however, that my brain has different modes for reading different things. The mode for reading novels is different than the mode for reading text books. The mode for reading online is different from either of them.

As I considered this issue in more depth, I realized that there are lots of things I have avoided reading online. If I get a short PDF, I will waste the paper and print it out. If, however, it is a lengthy blog post I’m fine reading, then it’s fine for me to read it online. I can read online news article just fine, but I can’t get in the right reading mode to really enjoy an online short story. This has been true for a long time and it’s become more pronounced since the onset of my fibromyalgia.

I broke down and bought the text books, because I realized that was the only way I was going to get through this class. I’ve realized that the mode I get into when reading course materials and fiction, while different, both involves being unaware of my surroundings and becoming immersed in the material. This is not possible when I’m online, accessing the material via my computer. I assumed my discomfort would change with increased exposure, particularly on the Kindle, but I’m beginning to wonder if this is just one of the quirks of being me.

I can’t help but wonder: Is it just me?

Roles

  • Posted on September 12, 2014 at 10:00 AM

We all assume roles in our lives. We’re parents, children, students, employees, professionals, and more. Some of us are advocates. Whatever our other roles may be, we choose to engage in advocacy in order to change the outcomes we experience and to improve the outcomes others will experience. We want the world to learn from what went wrong in our own lives.

In First Things First, Stephen Covey and his co-authors instruct us that the limits of the mind indicate we can best organize our lives around seven roles, plus the role we owe ourselves, which they call sharpening the saw.

With such a limit, I’ve devised the following roles:

  1. Mother: I will nurture and care for my children, enriching and empowering them to become the people they are meant to be.
  2. Wife: I will build a resilient, satisfying, and loving marriage with my husband.
  3. Builder/Servant: I will rely on my loving Heavenly Father to open the way for me to answer the callings He gives me, while I do everything in my power to build a righteous, faithful life on the Rock of His salvation and to endure well to the end.
  4. Marketer: I will build satisfying, sustaining, long-term business relationships with clients that deliver their products and services with honor and integrity by providing high-quality written and consultative services and by delivering them with honor and integrity.
  5. Writer: I will uplift other writers in such a way that I empower and inspire them to live their dreams.
  6. Advocate: I will build a peaceful and sustaining community of advocates to serve people with neurological differences and disabilities, that the people we serve may be enriched, employed, and empowered.
  7. Student: I will excel in my field(s) of study and earn my degree(s).

There are certainly other roles I could have, but most of those activities would fall under another umbrella. This way I emphasize what is most important for me to do with my time, my energy, and my life.

What are your roles?

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.

The Upcoming Appointment

  • Posted on September 5, 2014 at 10:00 AM

It’s finally happening. After waiting for over a year, Alex finally has an appointment at the speech clinic. I’ve waited so long that I’ve almost forgotten what it is I’ve been waiting for; but, now that it’s really happening, all that hope comes back to me. Alex…fitted with a communication device. Alex…able to tell us what’s on his mind. Alex…obtaining the power of words. Now that it’s so close, all of these hopes sound too good to be true.

I know it won’t be as easy as matching him up with a device and seeing magic happen before our very eyes. He’ll need to learn to use it. We’ll need to learn to use it. We’ll need to work together to make it work. But, still…part of me expects that this will be some sort of magic key that unlocks the inner workings of my child and reveals all that he’s been waiting so long and trying so hard to tell us.

I want to believe in magic. Part of me, the childlike part of myself that I’ve never lost, really does. I certainly believe in miracles. But it seems like too much to expect either. Between hope and anxiety, I wait for the upcoming appointment with tingling underneath the skin and tears right behind my eyes. I know there are words inside that boy!

Will this be the way we can at last get them out?

The First Day

  • Posted on September 3, 2014 at 10:00 AM

The boys are at school for their first full day of school today. This is the first full day of the new school year. It’s the start of new things:

  • Learning new things in new classes,
  • Attending class with new students and (for Willy, at least) new teachers,
  • Meeting (or not) new expectations, and
  • Aligning to new routines and new patterns.

Even though some of all this newness is actually the same as last year, it’s still new because there has been such a significant break between the end of last year and the beginning of this year. Furthermore, all three boys have made substantial growth in non-academic areas over the course of the summer, so they’re like new people heading into what may be an old environment.

After the rush of activity to buy new materials, new shoes, and new clothes for the start of this school year, I’m ready for the boys to go to school. I’m ready for the quiet and the relative inactivity. I’m ready to get back to my studies and get back to work. I’m ready to adjust that I may get back into the “normal” pattern of things. Whether it’s normal to human nature or not, the school year makes up the bulk of our yearly time, so it’s the “normal” we experience the most.

As ready as I am for the boys to be back in school, I still feel the loss of the moment and I still feel an overwhelming wave of anxiety for my children. I close my eyes and bring up all the words I have about all my children and fill the darkness of my pictureless minds with all their wonderful attributes. I silently pray, “Let this be a good day. Let the people of their new world see them for the wonderful people they are and appreciate them for all of who they are.” I hold each child in my mind for a moment. Then, I get back to work. I have a full day of work and studying to fit into this brief period away from my children. I have adjustments of my own to make to this new pattern of things. It’s a “first day” for me and for Mark, too.

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.