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On the Horizon: News About Me

  • Posted on January 14, 2015 at 10:00 AM

First, I have some very talented people helping me to create a professional website in my long-ago acquired online turf, www.StephanieAllenCrist.com. This transition will be very important to my changing business, but it will also impact my readers.

I’m still not sure how it’s all going to work, but essentially this blog is going to be ported to www.StephanieAllenCrist.com, merged with my other blog and with a new one, and organized by category: Writer, Advocate (that’s this one), and Marketer. Some of the old material will be dropped from the site (but not actual posts) and some new material will be available (more will be added as I’m able). In the end, it should be a wonderful website that has a lot more to offer, and is also easier for me to maintain.

This news leads directly into the next bit. I’m finally able to publishing Discovering Autism / Discovering Neurodiversity!!! Unless something changes dramatically in the next month, the e-book version will be available on Amazon and other retailers for immediate download, while the print version will be sold exclusively through, you guessed, www.StephanieAllenCrist.com.

After my memoir is published, I will also be publishing some shorter works. The details will be forthcoming when everything is a little closer to being ready to go. Meanwhile, I’m plugging away on the manifesto, which will be the next full-length book to follow the memoir.

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.)

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.

Self-Isolation

  • Posted on December 11, 2014 at 10:00 AM

Socializing is work. It takes effort. Even when the people I am socializing with are people who mean the world to me, the people I love, and even the people I love who I also live with, it takes work to socialize. When I’m overwrought, overwhelmed, overextended, overcommitted, and overtired, it takes a great deal of effort just to function. In those times, it’s easier to pull in on myself than it is to socialize.

I’ve been there a lot in the last few months. I’ll horde a small bit of energy for minimum-necessary-interactions, but I just can’t “be there” whenever I’m wanted, or even whenever I’m needed. According to a great deal of literature touching on a broad range of topics, this is not a “best practice” for human relations. The emphasis is almost universally on “being there,” wherever you are, whoever you’re with. If you’re at work, then be there. If you’re at home, then be there. If your home is your work, then set boundaries so you can be there with whatever set of tasks/people you’re with at the moment.

My conscience knows this is right and true. But, in these times of high demand and low self, it feels like a matter of survival to hold back.

When it comes to minimum-necessary-interactions, I force myself to be there, as best I can, no matter what. When I get the boys up and off to school, when I tuck them into bed, and the little moments that happen every day in between. I know my children need me to be there during these moments. But even then, even when I try my best, I tend to be so tightly strung that it’s far too easy for me to snap.

Ben, my baby, my willful young man, tends to trigger my breaking points. He’s not cooperative. He resists going to sleep. He resists waking up. Even with routines in place, there are transitions that he just doesn’t like. Oh, sure, eventually he will fall asleep, and eventually he will wake up, and if these transitions occurred according to his natural rhythms, he’d be just fine. But, like me, his rhythms are out of sync with the general public and the general public determines when school starts. To be honest, I don’t like it any better than he does. There are times when homeschooling seems all too attractive, if only because we could keep our own wacky schedules. Then, I remember that there would still be doctors’ appointments and a myriad of other engagements that have to be on someone else’s schedule. So, while I sympathize with Ben, I don’t give in. Except, sometimes I just don’t have the energy to do it right and my being there just makes things worse. His stubborn streak sets in and our volumes rise and Alex gets upset and the reassuring morning routine turns to chaos.

I’m a kids-first kind of person. It’s wired into my worldview. As the parent, it is my job to satisfy my children’s emotional/social needs as best I can. I feel a great deal less responsibility for the emotional/social needs of other adults. This is especially hard on my husband. We’ve been married for nearly seventeen years. We’ve been through the proverbial fire together. Sometimes it’s hard to tell whether we are interdependent or co-dependent or both, but we function best when we are in sync. But, when I pull back, I can’t provide him with the emotional support he needs. I do save up some time/energy for him, too; but, it’s not enough. He keeps trying to engage me when I have nothing left to give. And then there’s my mother, who needs me too, and I have even less to spare for her. The guilt just adds to the stress.

I live in a society that admires those who can “stand alone.” Self-sufficiency is encouraged. But there’s another side of that. There are people who stand alone because they have to and there are people who stand alone because they can’t/won’t stand with others. Those of us who isolate ourselves may do it out of a need to survive—a feeling that we have to pull in on ourselves, rely on ourselves, suffice ourselves in order to survive—but that doesn’t mean it’s healthy.

I can already hear the surge of criticism: I’m defining “healthy” as “normal” and all that. But that’s not it. We isolate ourselves to survive, because we feel endangered by others. Sometimes this danger is real—it is a learned response, after all—but the response becomes ingrained, it becomes triggered not out of any true danger, but out of habit. Human beings, even those of us who function differently, are not wired to be alone, even when we tell ourselves quite convincingly that we are. We’re not.

Socialization may be work, but it’s also a need. I know this, I understand this, yet the defense mechanisms remain. I know they can be changed. I know that I can change them, yet I feel as if I cannot. I feel as if I’m trapped in the isolation of my own making. My husband reaches out, my mother reaches out, but I am as intangible as mist. I slip through their grasp. I go it alone through the dark, even as I scramble for the light. But there’s no switch to flip. A lifetime of learning cannot be undone in a single moment. The darkness I see is behind my own eyes. It’s inside me. It’s a choice made too many times. But I can choose differently.

The Mystery of the Undisclosed Diagnosis

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

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

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.

No Title

  • Posted on January 31, 2014 at 10:00 AM

As I start my second semester of public administration studies, I embark on a study of administrative ethics. Ethics has always been of great interest to me, because I feel it is very important, even essential, to do what is right as much as possible. If I am to increase the opportunities for me to do what is right, then I have to better understand what the right thing to do is. Ethics helps in that goal by helping me construct a framework to use when making decisions.

In my recent reading, I learned something new, something rather unexpected, and I’d like to share it with you. The text I’m reading now is The Responsible Administrator by Terry L. Cooper. According to Cooper, responsibility is a relatively new term coined after the American and French revolutions in response to the need of a new way to define “a common set of values among people of divergent cultures and traditions.”

Apparently, the change of political and governing structures did so much damage to our ideas of roles, structures, and obligations that we had to create a new framework for understanding and expressing our expectations for ethical behavior. Responsibility asserts obligations on individuals in order to describe and attribute obligations for achieving what is right.

In this sense, the idea of responsibility is evolving and adaptable as we learn more and more about what the consequences of behaviors and values can be, thereby bringing us—as a society and as individuals—closer to what is right.

Cooper asks, “What does it mean to be a responsible parent in the first decade of the twenty-first century? Or a responsible spouse, responsible citizen, responsible politician, or responsible public administrator?”

As a partial answer to this question, Cooper proposes, “Responsible administrators must be ethically sophisticated enough to reason with others about the ways in which their conduct serves the public interest and have sufficient clarity about their own professional ethical commitments to maintain integrity and a sense of self-esteem.”

Remembering that I am studying public administration with the intention of learning what I need to know to found my own nonprofit organization, which will serve people with neurological differences, I cannot help but apply these questions and this answer to my own areas of interest.

What does it mean to be a responsible parent of a child with autism? What does it mean to be a responsible citizen in a society with people with neurological differences? What does it mean to be a responsible founder of an organization intending to serve the needs and interests of people with neurological differences?

It is not enough to simply do what you believe is right. You need to be able to explain, articulate, and justify why it is right, because then you can apply the ethical standard more generally. For example, a responsible parent of a child with autism will not pursue treatments that endanger the life of their child, because the life of their child is more important than the outcome of the treatment. Projecting this value further, a responsible parent of a child with autism will not kill their child because the child’s autism is incurable, because the life of their child is more important than whether or not the child is autistic. By understanding and articulating our reasons and our justifications, we clarify our ethical standards and reveal lapses in ethical judgment.

Voices: Susan Senator

  • Posted on December 4, 2013 at 10:00 AM

Though her son, Nat, is older than any of mine, I can’t help but find something of a kindred spirit in the voice of Susan Senator. I’ve agreed with her and disagreed with her in times past, but I’m not going to dwell on the totality of the autism dialogues. Instead, I’m going to focus on two of the sentiments she shared in this piece.

First, there’s this passage, which highlights a problem we both see:

And nothing really changed for him until he was nearly 6, in a school that practiced a strict behavioral approach. Behaviorism was the only thing that could puncture that apparent indifference of his. I didn’t like this approach for that reason. It seemed almost mean-spirited, to force him to pay attention all the time to others’ trains of thought, to reward him like a puppy, with treats, to make him work every waking moment to correct himself. To learn that everything he did was wrong.

Even though my children are so much younger than her on (my oldest is not yet 15) this is still the dominant, prevailing attitude and approach to autism treatment.

Then, there’s the alternative she highlights, which I propose as a widely applicable solution:

Somewhere along the line I let it go. But when he reached his late teens, there was a stunning burst of growth. The sun’s rays shot out from behind those clouds and suddenly he wanted to be with people. No, he did not de-auticize. He just wanted friends.

It was plain old being ready. Time. And the nurturing acceptance of Special Olympics coaches. The message that you are perfect just as you are, now let’s play ball.

Children grow up, whether they are autistic or not. Acceptance nurtures that growth, whether the one who is accepted is autistic or not. Think back to your own childhood. Who made the most positive differences in your life? Did they treat you like a problem that needed to be fixed? Or did they treat you like a person who was worth helping? Does your child deserve any less?

Still Not Broken

  • Posted on November 18, 2013 at 10:00 AM

My children aren’t broken,
don’t try to fix them!

I wrote those words on a sign that I placed in the front of the binders the behavioral therapists used during therapy sessions. It was true then and it’s still true now.

Too many people in our society view “autism” as synonymous with “broken.” They expend tremendous amounts of money and energy trying to “fix” them or trying to learn how to “fix” them.

A leg may get broken and, yes, fixing it is a good idea. A person who is different isn’t broken. They’re different.

Those of us who live in the U.S. live in a society that is broken and has been broken since it was founded: All men are created equal. We say it. But too many of us don’t believe. “The Old World” was broken before the U.S. was even founded. Canada and Australia haven’t fared much better than we have. I don’t know of any place that gives more than lip service to the idea that all men are created equal, or better yet that all people are created equal.

We live in a world that is utterly convinced that survival of the fittest is the only way to survive. We’ll give lip service to equality, justice, and the like. But when it comes to hard times the “fittest” are the ones that make the rules and they make them for their own benefit.

My children aren’t broken,
don’t try to fix them!

I mean it!

Should I Create a Newsletter?

  • Posted on October 30, 2013 at 10:00 AM

Part of me thinks I should create a newsletter that people could sign up for to get more information about autism, neurodiversity, and advocacy. Quite a few people have asked for if I have a newsletter over the years, but I usually just send them to my blog.

What do you think? Should I create a newsletter? Would you sign up? If so, what would you like to see?