Recently Astrid wrote a response post, on which a certain blogger made the claim that accommodations are insufficient for people with LF autism.  (I’m side-stepping the debate on whether HF/LF is a fair and reasonable distinction.)  Instead, I will jump right to the part where the example cited by this individual—which was intended to demonstrate the inadequacy of accommodations—included accommodations as a means of achieving a satisfactory outcome.

This implies to me that “accommodations” is a word that is flung around far more often than it is understood.  So, what constitutes an accommodation?

Let’s go back to our friend, the dictionary:

ac·com·mo·da·tion –noun

1. the act of accommodating; state or process of being accommodated; adaptation.

2. adjustment of differences; reconciliation.

3. Sociology. a process of mutual adaptation between persons or groups, usually achieved by eliminating or reducing hostility, as by compromise or arbitration.

4. anything that supplies a need, want, favor, convenience, etc.

5. Usually, accommodations.

    a. lodging.

    b. food and lodging.

    c. a seat, berth, or other facilities for a passenger on a train, plane, etc.

6. readiness to aid or please others; obligingness.

7. a loan.

8. Ophthalmology. the automatic adjustment by which the eye adapts itself to distinct vision at different distances.

9. accommodation bill.

Take a close look at definition 4:  “anything that supplies a need, want, favor, convenience, etc.”

If a person can’t communicate verbally, providing them with a Picture Exchange Communication system is an accommodation—it supplies a needed means of communication.

If a person can’t walk independently, providing them with a cane or a wheelchair is a form of accommodation—it supplies a needed means of mobility.

If a person can’t shout loud enough for somebody in the next state to hear them clearly, providing them with a telephone with long distance service is a form of accommodation—it supplies a wanted means of communication over long distances.

If you change a situation (whether that involves physical or procedural change) to satisfy an unmet need or want, or to increase the convenience of a situation, you are providing an accommodation.  If accommodations were provided to individuals with disabilities, their potential would not be hampered by the same limitations they face without accommodations.  The crux of the accommodations argument, in my opinion, is two-fold:  Do we prioritize accommodations sufficiently to meet the needs of members of our society?  Do we prioritize the design and development of accommodations sufficiently to meet the needs of members of our society?

Accommodations could be used to assist every individual in our societies to succeed if appropriate accommodations befitting our technological development were designed and distributed to those who need them.  Even in socialist countries this does not occur—neither the design nor the distribution—because individuals who need such accommodations are not sufficiently valued to justify the expense.

In short, by raising the value of individuals with disabilities (acceptance) and advocating appropriate accommodations, I seek to enable individuals with all abilities to live up to their potential.  For some, the accommodations they need will be easily come by.  Others will need more accommodations—perhaps even accommodations that do not yet exist.  That does not mean that accommodations are, in and of themselves, inadequate to meet the given needs; that means we need to improve our design and distribution of accommodations to meet the existing need for them.

Recently I was reminded that I am such a person.  During my graduation party I was sitting with a circle of friends.  My husband, my mother, my brother and I were there along with another couple we’ve known for years and an old friend.  These are all people I know well, who I am comfortable with, and who know me in my many idiosyncrasies and accept me as I am.  This old friend and I started talking about a topic of mutual interest.  I became highly engaged in the conversation.  Without meaning to or even being aware that I did so, I focused on this gentleman at the exclusion of all others.  It wasn’t until he pointed out that our conversation was excluding everyone else that I became aware of this.  This wasn’t a “party” conversation and it was not appropriate to become so highly involved that I was not aware of where I was and who I was with.  Intellectually I know this, but I lack the intuitive sense that most people have regarding such things.  Whether he knew it on an intellectual level or an intuitive level, he knew he would have to break open the conversation to get me to re-focus.  He did so without making a big deal out of it or making me feel foolish.  The other people knew me well enough to realize I did not mean to exclude them and did not take offense that I had.

This example shows engagement on multiple levels.  I was very much engaged in that conversation, but I was not engaged in social context I was in once the conversation had begun.  Whereas my friend was engaged in both the conversation and the social context; he was also engaged with me as a person to the extent that he knew I couldn’t pull back on my own.  And I need that.

Adapting to my means of communication requires effort from others; however the amount of effort it requires is relatively small.  I talk like an intellectual.  For the most part, I use proper grammar when I speak and I use the words that are appropriate, whether or not they are commonly known.  I also have focus issues.  All of these represent barriers in everyday conversation, but the barriers are fairly easily overcome.  If you tell me you don’t understand, I will tone down my language.  If you tell me I’m excluding others, I will pull back and try to engage in my surroundings.  I am somewhat adaptable, and I surround myself with people who are able to accommodate me in my conversational short-comings.

There are, however, people whose means of communication are far more atypical than my own.  My son Alex is one such individual.  As a primarily non-verbal person, he is often left out of conversations and social interactions.  He’s very difficult to communicate with because he has a very limited ability to adapt his skills to converse with others.  It’s also difficult for him to engage with others.  This means that most of the “heavy lifting” has to be done by the other person.

In contemporary society, Alex’s communication challenges seem to be seen as putting an “unnecessary burden” on others.  Two ideas are inherent in this assumption:  First, other people are not obligated to put forth the effort necessary to communicate with Alex.  Second, Alex needs to be “fixed” in order to communicate effectively.  Another assumption is made—awareness of which seems even more fleeting—and that is that because Alex doesn’t communicate in a typical way and cannot express himself effectively in his atypical way, he doesn’t have anything to say.  The first two assumptions are negotiable—I don’t agree with them, but there certainly is room for intelligent debate on those issues.  However, the third assumption, the one people seem least willing to admit they make, is wholly and completely wrong.  Those people who make the effort to communicate with Alex on his own terms and within his own limitations will find Alex has quite a bit to say.  It’s difficult to understand, of course, but there is definitely a lively, thoughtful child “hidden under” the communication and social challenges.  Except that he’s not really hidden at all.  People perceive that he is hidden, because they filter out his attempts at communication and force him into a template of “those who do not communicate.”  He is there; they just don’t really see him.

So, now I’ve wandered back into the realm of stereotypes.  My point is not to decry those individuals who dismiss my son (okay, so that is a lingering point in much of what I write, but I do have another point to make as well), instead my point is that as a parent I do have an obligation to put forth the effort necessary to communicate with Alex.  So does my husband, his teachers, his doctors and his therapists.  This is non-negotiable.  While the rest of the world may be able to debate why they shouldn’t have to put forth this effort, while they may be able to hunker down and refuse to do so like petulant children; we can’t.

Now, I could go off on a long tirade about how some parents don’t accept this obligation, or how there are far too many teachers, doctors, therapists and caregivers who neglect their obligation to communicate with the people in their care.  But I won’t.  Perhaps I’ll do that at a later time—maybe when I have a better idea how to fix that problem.

Instead, I will return to how engaging is work.  Communicating with someone who communicates a little differently, such as myself, requires a little more work than the average engaged conversation.  Communicating with someone who communicates in a manner significantly different than your own, such as Alex, requires a lot more work than the average engaged conversation.  Except the average engaged conversation is itself a rarity.  More often we simply interact with templates instead of engage in conversations.

For a long time now I’ve known that communicating with Alex is something like speaking to someone in a foreign language you don’t really understand.  It’s a learning process full of fits and starts.  It requires a lot of effort and sometimes I’m simply not up to the challenge.  But I force myself to try, because Alex needs me to make that effort.  Recently, the gentleman who was so good at prompting me to be more inclusive in our conversation at my graduation party was living with us.  He put a great deal of effort into learning to communicate with my children.  He also commented that learning to communicate with my children taught him a lot about communicating with other people as well.  This struck a chord with me, because I have discovered the same thing on my own.  Recently, my husband Mark commented that he found it very difficult to interact with Alex.  While he was referring to play, communication is a big part of that—and that communication is the biggest challenge for Mark.  Mark has been able to connect with Willy and Brandon very well.  He’s also able to connect with Ben, though sometimes it seems that this is because Ben is so fascinated with Mark that Ben overcomes his own challenges to make the connection happen.  But a similar connection with Alex eludes him as the communication barrier still looms largely between them.

I guess my point is this:  As much work as it is to communicate with someone who communicates in an atypical manner, the rewards for those who make that effort are often much bigger and much grander than communicating successfully with that one person, though I’d say that’s a pretty big, grand reward all by itself.  Make the effort; it’s worth it!

We interact with people we know on a regular basis.  These are our family members, our friends, our co-workers, and our neighbors.  We don’t necessarily stereotype these individuals, but we do create mental templates of who and what they are.  These templates are more the accumulated experiences we’ve had with these individuals.

It is often easier to interact with these templates than it is to engage with the individuals. This goes back to the difference of engaging with your child and half-listening while thinking about that pesky to-do list running through your mind.  The problem with failing to engage while talking with people we know is that even our templates of these individuals are faulty. 

However well we know an individual, our perception of them is always filtered through our own biases and our own experiences.  We insert these filtered perceptions into our mental templates of individuals, and what we get is a flawed, distorted copy of the person we know.  When we interact with the template instead of the person, we are interacting with a distortion.  Only by genuinely engaging with the individual are we able to break past our own internal filters to see the person more clearly and understand what the individual is trying to communicate.

This becomes especially important when we interact with people with atypical means of communication, but that will be the subject of my next post.

The point of this post is that failing to engage with individuals we know creates miscommunication.  If we think we know what someone is going to say, we often fail to listen to what is actually said.  Even after we have failed to hear them, we think we know what they said.  In our mind, we insert the conversation we think we had into our mental template of that person.  Not only does this mean we have miscommunicated in this one instance, it also perpetuates the miscommunication in future conversations.  We go back to the conversation we think we had and take it a little further the next time we talk to that person.  The second time we get a little further from what is actually being said.

Only be engaging in the conversation and listening actively and involving ourselves in how our own life intersects with the other person’s life can we truly know what that person is saying.

Engage has many definitions; I tend to use it in the more general sense of “to involve oneself or to participate,” which is the context in which I use it now.

Engaging is an active state of being.  You can engage in a job.  Say you’re sorting through information at work.  While you’re doing this you could be distracted by whatever is on your mind.  Or you could engage in the task, focusing your mental prowess on the task at hand.  You will likely produce higher quality work if you engage on the job.  You can engage in a conversation.  Say you’re talking with your child.  While you’re doing this you could be distracted by the mental to-do list running through your head.  Or you could engage in the conversation, focusing your attention on what is important to your child.  You can engage in a story.  Say you’re reading a book or watching a movie.  You could go into that “glazed” state where you are absorbing the entertainment and “rotting your brain.”  Or you could engage in the story by paying attention to the creative work and trying to experience what the artists were trying to express.  You bring something of yourself to the experience and come out of it with something truly unique—a communion of sorts between the artist and yourself.  In each of these examples, you are bringing something of yourself to the task and making for a richer experience by engaging.  It requires both an effort on your part and willingness to open yourself up to something outside of yourself, but in return you get a higher quality experience.

 I propose that one of the reasons prejudice (and the discrimination that results from prejudice) is so prevalent in our society is because of a lack of engagement.  I propose this lack of engagement can also explain the divisive politics that rages through the U.S. and other examples of polarization.

Basically my theory is this:  To communicate effectively and productively with someone who thinks and feels differently than you do, you need to engage with that person.  The more differently that person thinks or feels, the more you need to engage with that person in order to gain the kind of understanding necessary for genuine communication to occur.  We fail to do so for two basic reasons.  First, engaging is work.  It necessitates that we exert a significant amount of mental effort.  It is much easier to just be there, not really listening, not really understanding; relying on our assumptions to fill in the gaps left by our failure to engage.  Second, engaging can be uncomfortable.  When we engage in someone who is significantly different from ourselves we are willfully challenging our own assumptions, ideas, and worldviews.  This is inherently uncomfortable and human beings tend to develop self-defense mechanisms to prevent such a challenge from occurring.

So, instead of engaging we stereotype.  These stereotypes can be positive, but are more often negative.  Even when positive, these stereotypes are destructive because they prevent understanding and dehumanize the “other” in the process.  In this sense, stereotypes are very similar to a template.  Imagine you are trying to start a new blog.  You find a template that has the right look (stereotype), but after you start using it you realize the content you want to include doesn’t fit the template.  The work-intensive method would be to start from scratch and build your own template that has the look you want but also meets the needs of the content you want to provide.  A less work-intensive method would be to modify the template to account for the content you want to add but cannot fit.  However, it is more likely that you will simply trash the content that doesn’t fit—you don’t really need it anyway—and stick to the template you’ve chosen.  If people were blogs, then the template would be what they are (doctor, Republican, person with disabilities) and the content would be who they are (their thoughts, feelings, experiences, and the conclusions they’ve drawn from them).  Our failure to engage trashes the content of the person in favor of the imperfect, inappropriate template we chose to interpret their content through.

This occurs at what I would call the macro level.  We stereotype groups of people and put them into the templates we’ve chosen for them.  When we meet individuals who belong to those groups, we trash any content (who they are) in favor of the template we assume they fit into (our own concept of what they are).  This also occurs at what I would call the micro level, which constitutes using templates of people we know instead of engaging with them at a particular time and place.  That will be the subject of my next post.

Executive Summary: A less-than-100%-coherent search for spoons, which represent our daily currency to get things done.

During the latest Blogging Against Disablism blogswarm, I read a post that mentioned the “spoons theory.”  I wasn’t not sure what the author meant and he/she didn’t elaborate.  But I did find an article/post that described the theory. (Recommended reading!)

I’d gotten the general gist of the theory based on the context of the original post.  In short, spoons represent your energy and ability, like currency.  You have a limited number spoons each day and have to spend them wisely.

(I disagree with the author that healthy people don’t have to worry about this.  Perhaps some people don’t think about it, but the reality is we have all a finite number of spoons each day.  Some of us just have fewer spoons than others, and some of us require more spoons to accomplish a given task than others.  And every day is different.)

Most days I have sufficient spoons.  Don’t get me wrong.  I’m not rolling in spoons.  It’s not like I have so many spoons to spare that I don’t have to think about how I spend them.  Usually I have just enough spoons to get through the day.  But I do get through the day.

Each day I spend some spoons without making a conscious choice.  I have compulsive tendencies.  If I do not control these tendencies, they control me.  Controlling these compulsions requires having spoons to spend.  I also spend spoons to deal with the stimuli in my environment.

Noise costs me some spoons.  Interestingly enough, silence costs me spoons, too—just not as many spoons.  In order to not spend spoons, I need a manageable level of consistent white noise.  Then, of course, listening costs me some spoons, because I have to drown out the white noise to focus on what the other person is saying.  Really, when it comes to auditory stimulation, I just can’t win.

Touching an icky texture costs me a spoon.  A smell that triggers my gag reflex costs me some spoons, if I don’t have the spoons I throw up and that will cost me more spoons—even though I don’t actually have the spoons to spend.  Processing too many visual elements costs me a spoon.  Wearing clothing that requires processing costs me some spoon (itchy clothes, skirts, or tops that dip down if I bend forward are examples), how many depends on how much and how often my clothing requires my attention.  Basically, just having to process the world around me costs me spoons.  Add human interaction into the mix, and I use a lot of spoons just to exist within an environment.

Keep in mind I haven’t done any work yet and have already spent quite a few spoons.

(This is why I consider myself borderline-neurodivergent versus autistic.  This is not to say that I actually believe there is a border—I believe autism is a range within the human range of experience and that our choice to make firm distinctions is a value judgment that doesn’t accurately reflect reality, but that’s another post.  The point is that my ability to pass for most of my life without anyone suspecting anything was really “wrong” leads me to differentiate my experiences from both “normal” people and genuine autistics.  I seem to have more spoons than most autistics, but I spend my spoons on things that don’t require spoons from “normal” people.)

But there are those times when the monster under the bed eats my spoons before I even get up in the morning—or in the afternoon as the case may be when I’m being night-owlish.

Over the last month I’ve had sinusitis, or maybe it’s allergies, or—well, we really don’t know.  But I’ve had fewer spoons as the days go by, yet I had just as much work to do.  So, I overextended myself, spending spoons I didn’t have.  Of course, there’s a cost for that.  A steep cost.  I end up with fewer spoons the next day.  If that wasn’t problematic enough, I have to spend more spoons to do the same tasks, which I still have to do though I don’t have the spoons.  Thus, the cycle of spending spoons I don’t have continues and grows.

Work, of course, requires spoons as well.  Play requires spoons too.  Taking care of the kids, taking care of the house, and spending time with family and friends all require spoons.  Outings of any kind require having plenty of spoons to spend.  Getting ready for an outing costs me spoons.  The type of outing indicates how many spoons something is likely to cost, but the indication may be off depending on what happens during the outing.

On most days I have enough spoons to do all the things I need to do, most of the things I should do, and some of the things I want to do.  The closer I’m able to stay within my comforting routine, the fewer spoons I usually have to spend coping and the fewer spoons it costs me to complete a task.

Then, there are those times when I don’t feel well.  Having a headache costs me spoons.  And that’s just having the headache.  Treating the headache requires more spoons.  Doing something while I have the headache costs me spoons to have the headache, plus the spoons to perform the task, plus a few extra because the task requires more effort.  This is true of any bodily discomfort.

Lately, I’ve had headaches, nasal congestion, chest congestion, coughing, pressure in my head, feelings of disorientation, earaches, tickly ears, and a sense of unbalance.  Each of these symptoms necessitates the spending of spoons.  Just having the symptoms costs spoons.  Treating them costs spoons.  Doing other tasks while having the symptoms costs the spoons to perform the task plus extra spoons for the extra effort required.

It’s easy to see why I’ve been running short on spoons.  Yet, work needs to be done.  So, I spend spoons I don’t have, sabotaging future days and future work, which requires spending more spoons I don’t have.  Badness, quite obviously, ensues.

Now, getting the point, I spend spoons to control my compulsiveness.  If I choose not to do so, if I let the compulsiveness win, not only do I not spend spoons to control my compulsiveness, I get spoons for allowing myself to be compulsive.  So, when I finally admitted I had to stop spending spoons I didn’t have, I recouped by sleeping more and watching La Femme Nikita.  Television poses significant challenges for me.  Once I start watching something I really enjoy, I don’t want to stop.  It costs spoons to not watch.  The same thing happens with book series.  If the series continues, but I don’t have the next book, it costs me spoons not to purchase and read the book.  So, allowing myself to watch whichever show I’m into is like getting extra health points in a video game.  I get more spoons!

But, in the process, I lose time.  If I have a full day scheduled, I won’t be able to do all my work, because it costs time to get the spoons to do the work.  Then, I have to choose which work needs to get done, do that work, and let the rest go until I have spoons I don’t have to buy with time.

But (there seems to be a lot of buts in this post), if I try to indulge myself and am thwarted, that costs a lot of spoons.  So, when the DVD-drive on my laptop couldn’t find the DVD (hello!  It’s in the drive!), I spent four hours trying to make it work.  In the process I discovered that this drive has problems—not just mine, but a lot of people’s—and that there was no identified solution, so I ordered an external drive online.  Not because we had the money to spare, but because it was costing me far too many spoons and far too much time not having a DVD-drive that would actually, consistently and predictably play DVDs.  (I don’t cope well with things that don’t work the way they’re supposed to.  I mean, really: DVD-drive = drive that plays DVDs.  Why is that such a difficult concept for my computer to understand!?!)  After that, I took my DVD upstairs and watched it there.  Luckily, my husband recognized that watching the DVD had become a need—and I do mean need, I didn’t have enough spoons left not to watch it—and he abdicated his computer time in favor of my indulgence.  (Isn’t he fabulous!)

So, I guess the point is—do I have a point?—ah, yes, the point is that we must manage the spoons that we have.   We must be aware of how our spoons get spent and what gives us more spoons than is spent doing it.  It’s kind of like celery.  I once heard that digesting celery consumes more calories than the celery contains.  Most activities consume more spoons than the activity provides.  But there are spoon-rich activities (i.e., chocolate cake, not celery) that will provide more spoons than performing the activity consumes.  Everyone is going to have their own spoon-rich activities.  Find yours.  Use it to help you manage your spoons.  Then all you have to do is manage your time, but at least you’ll have the spoons to do it!

Executive Summary:  Alex dislikes dental work.  I believe in empowering patients to make choices regarding their own dental care.  Yet, I do not allow Alex to refuse dental care.  The difference is that care is being sought for my child’s benefit, and not my convenience.

The waiting room was okay.  Alex bounded from spot to spot, reading as many words as he could find.  Then, the dental assistant came.  We talked for a few moments.  When it was time to go into the back I called Alex to me, but he didn’t come.  I took him by the hand.  He walked with me and stopped a few paces in front of the door.  I tugged gently on his hand, an act that was more communication then force.  He looked at me, and took just enough steps forward so he was inside the door.  The door closed behind him.  Step by step, we moved forward—him resisting, me encouraging.

I said, “I will carry you if I have to.”

Alex chose to walk.

The dentist’s office is a difficult place for Alex to be.  He generally resists anything that involves others touching his mouth.  He resists brushing his teeth, flossing, and all forms of dental care.  He resists us looking at his teeth or checking for wiggly, loose ones.  He resists the removal of wiggly, loose teeth or the removal of any miscellaneous particles he decides to chew on.

I expect resistance, which is why I travel two hours to take him to this clinic.  The staff is prepared for his resistance and the facility is equipped to make dental care as safe and as comfortable as possible.

This particular appointment was a “quickie.”  The task was to fill a chip on his front tooth.  Easy access.  No drilling.  No paste.  If Alex had cooperated the whole thing would have taken 5 to 10 minutes.

Of course, Alex did not cooperate.  Or, to be more accurate, Alex cooperated as much as he was able to do with his current level of oversensitivity and anxiety.  He squirmed most of the time.  He cried quite a bit of the time.  He got out some good words, through a pry-thing that forced his teeth apart, saying, “I don’t want.  Don’t want.  I don’t want.”

We acknowledge his words.  We told him we understood.  We explained as best we could that we had to fix his tooth so the big-boy tooth didn’t rot and break the way his baby tooth had done.  He understood.  He took a few ragged breaths and was relatively calm (but still squirming) for a few precious moments, which gave the dentist the opportunity she needed.

The dentist was quick as she could be.  She talked to Alex with respect while she worked within his limited range of cooperation.  She chided him when necessary and complimented him whenever possible.  In the beginning of the session, she joined in as I sang Alex’s special song to him to help him control his anxiety.

Alexander, Alexander.  I love you.  Yes I do.

Really special boy-oy.  Really special boy-oy.

I love you.  Yes I do-o-o-o-o.

Despite not liking the work she does, Alex likes his dentist quite a lot.  He made excellent eye contact with her, which is rare.  When it was all done, he even smiled for her.  But for all that he likes he, that doesn’t mean he’s able to cooperate while he’s in that chair.

The experience is hard on all of us.  He doesn’t want to do this.  I empathize, because I find the dental experience to be a miserable one myself.  I also don’t want Alex’s teeth to deteriorate the way mine have after a childhood (and much of my adulthood) of not receiving proper dental care.  I know, in the long-run, the misery of receiving dental care today is much, much better than the misery of decayed teeth with its tooth aches, drilling, pulling, and fake teeth.

One might think that all of this is beyond his understanding, but Alex gets it.  As much as he dislikes this he does get that we’re not trying to hurt him or ignore his wishes.  He gets that this needs to be done, and he gets that we try to make it as good for him as we can.  There was a precious moment after the filling was put on and set when Alex was calm.  He stopped squirming and crying.  He took a few ragged breaths.  He looked at the dentist’s face and he waited.  It was like he was saying, “Okay, what happens now.  I’m ready.”

The only thing that was left at the point was the x-ray.  Last time it took an extra person and four tries.  This time it only took two tries and no extra assistance.

We’re making progress.  Alex did really well.  The dentist and I praised Alex profusely.  Alex left with a smile, but he also left as quickly as he could.

Still, I look back and think about that precious moment of stillness.  As a mom, one of my biggest challenges is doing things to my kids that I know they don’t want, but need anyway.  Things like dental care, shots, and surgery.  These unwanted needs make me wonder how deeply my respect for my children really goes.  I strongly advocate the patient’s right to choose the type of care received or to forego care entirely.  I advocate these rights for patients who society deems incompetent to make these decisions.  Yet I make decisions like this for my children.

There are times I feel like a hypocrite.

Then, I think about that moment of stillness.  I think about the smile Alex gave to the doctor.  I think about the way he cuddled close to me after all of it was over, and how he relaxed after I told him he did a good job and that I was proud of him.

I think about how there are times, even as an adult, when I don’t want, but still need medical care.  I think about how anxiety-laden my own dental appointments are.  I think about how much it hurt to regain the mobility of my wrist.  I think about how, after the surgery on my wrist, I kept apologizing for needing a heftier dose of pain medication.  When I got home I apologized for needing my husband and my mother’s help.

And I let go of the guilt and the doubt.  I’m not a hypocrite.  As a parent, I have to make some tough decisions.  I have to decide what medical care has sufficient value to force that care on my children.  Sometimes this means dosing the child with antibiotics.  Other times it means restraining my child so a dentist can fix his teeth.  Sometimes it means talking the child through the anxiety of getting blood drawn or getting a shot.  But at no time do I do these things for me.  At no time do I put my convenience over my child’s care.  At no time do I treat my child as if his will doesn’t matter.  I talk, I explain, and I comfort.  I give my children choices whenever I can.  I refrain from making choices based on my needs or my convenience, but base my decisions on the long-term best interests of my child.  And my children recognize the difference.  That difference is going to empower my children to make their own decisions in the future.

A new reader recently suggested that I’m a proponent of people-first language.  While this assertion is wholly understandable, it is not accurate.

As a writer, I find people-first language to be clumsy.  It interrupts the flow of the prose.  Yet, I would readily and easily sacrifice the flow of my prose for the sake of putting people first.

Except, people-first language doesn’t do that.

People-first language doesn’t put people first, conceptually speaking.  It’s a political device that puts politics first.  I have far too often heard others use people-first language in an ablistic, derogatory, people-last manner.

“My son is a child with autism.  It’s so horrible having a child with autism that I’ve considered taking him by the hand and jumping off a bridge.”

People-first language is only as good as the thinking of its user.  Disability-first language is only as bad as the thinking of its user.  When I say my children with autism or my autistic children, my language has changed but my thinking has not.  If I use auties, autists, or autistic, my language has changed but my thinking has not.  My children are always people first in my mind.  That’s how I conceptualize them.  They are people.  Facets of those people manifest themselves in behaviors psychologists (and, in turn, society) describe as autism.  Thus, they are people with autism.

People-first language does not change people’s thinking.  People-first language just changes their speaking.  To change people’s minds, their thinking needs to change.  Language can help.  People-first language can help.  But people-first language is not the solution; and it is often the smoke-screen that disguises the problem.

Yet…  Autism is somewhat unique in this respect.  While I do not see “blind people” as being blind first and people second regardless of the language I use, I also do not feel comfortable citing such a disability first and the person second.  I prefer, clunky as it is, to use “person with a visual impairment.”  Though I will gladly use whatever the individual prefers.  The same goes for other physical or mental/intellectual disabilities.

Part of the reason why I make this distinction is because Western culture has, for so very long, seen people with these kinds of disabilities as being not-whole, and therefore not valuable.  It’s so easy to see the disability first.  Yet, by putting the person first we can hope (however much in vain) that people will start seeing the people, regardless of their abilities/disabilities.

Yet…  The more my path crosses with other disability rights advocates—those not directly associated with neurodiversity—the more I see advocates re-claiming words like “crip.”  I try to respect and appreciate what they’re trying to do.  I try.  But the idea of calling another human being a “crip” makes me uncomfortable.  But, if that is their choice, who am I to say they’re wrong?

In short, I am an advocate of people-first thinking.  If we need people-first language to facilitate that thinking, then so be it.  Someday I hope people-first thinking will be so strongly ingrained in our societal make-up that we can talk with and about people with any disability without having to think about what to call them.

***

Now, on a different note, if you’re interested in exploring language in a poetic style, I would recommend checking out http://www.wordgathering.com/ .  The Inglis House Poetry Contest has two categories.  One is open to all.  The other is limited to writers with disabilities.  The subject of poems submitted to both categories is disabilities.  There’s no entry fee, but there is a prize.  So, if you like to play with words give it a try!  The deadline is June 1^st, though, so you’ve got to be quick!

Executive Summary:  Disablism happens because the majority of people (US-specific) believe physical, mental or psychological differences make a person disabled.  Yet the majority has technologies and accommodations that make them able.  The reason why the “disabled” sub-population lacks appropriate technologies and accommodations is because their needs differ from those of the majority.  It is this lack of appropriate technologies and accommodations that truly disable or impair these individuals.  As a society we can allocate our resources in order enable everyone.  Will we choose to do so?

Disablism refers to the societal tendency to single out, exclude or mistreat people with physical, mental or psychological impairments because of those impairments.  But even here, in this simple definition, disablism intrudes.  The physical, mental or psychological differences are assumed to impair (meaning to lessen the quality, strength, or effectiveness of) the person with said differences.

I wish to challenge that assumption.  In the US this assumption is the foundation of the paradigm (meaning the worldview formed on the basis of beliefs, teachings, and experiences that shapes the perceptions of an individual when processing new teachings and experiences) held by the majority.  Within this paradigm it is the disability or impairment—the mental, physical or psychological difference—that impairs or lessens a person’s ability to participate in society.

Obviously!  That which is obvious is not necessarily true.

We are all more able, more empowered, and more effective with the use of technologies and accommodations that help us go about our daily tasks.  For example, we are all impaired when it comes to talking over long distances—so we use telephones, cell phones, Web cams, chat rooms, and e-mail to communicate over these distances.  People who do not have these communication technologies are accommodated through public phones and library computers.  We are all impaired when it comes to traveling over a long distance in a timely manner—so we use cars, trucks, and bicycles to span these distances.  People who do not have these transportation technologies are accommodated with buses, trains, and other forms of public transportation.  We are all impaired when it comes to learning—so we use textbooks, schools, black boards, Web sites, Power Point presentations, and other technologies to condense and teach the things we all need to learn.  People who cannot afford access to these education technologies attend public schools, visit public libraries, and get grants and loans from the federal government to attend technical colleges and universities.

Because “we all” have these impairments, the technologies and accommodations we need to improve our effectiveness are readily available.  Individuals with disabilities, as a whole, make up a significant sub-section of our population.  However, the specific technologies and accommodations that can compensate for their individual differences are not readily available, because the technologies and accommodations that would satisfy their needs are often unique to them.  At the very least, they’re not particularly useful to the majority.

That is the difference.  The impairments “we all” have our alleviated with technologies and accommodations; the impairments “they” have are not, because the technologies and accommodations “they” need are of no use to “us.”

Thus, the pervasive American paradigm is based on the “we all” standard.  If “we all” need something, then it is normal and “we all” obtain access to the technologies and accommodations we need; even if it means burying our country under a huge burden of debt.  If “some” need something to help them do what most do “naturally,” then those who with special needs are impaired or disabled and satisfying their needs is a burden “we all” won’t accept or tolerate.

Is this the land of the free—where so many are impaired and boxed in by the barriers we create as a society?  It’s time to shift our paradigm (paradigm shift: the internalization of a new belief, teaching or experience that dramatically changes the worldview of an individual).  The individual is not impaired because of their physical, mental or psychological difference; the individual is impaired because he or she lacks the accommodations or technologies that would enable him or her to participate effectively.  A lack we the people created out of our own ignorance and small-mindedness.

The truth is this: With the technologies and accommodations that are right for them, individuals with physical, mental or psychological differences can participate in and contribute to our society.  They can live not as “disabled” or “impaired” individuals, but as able, powerful, effective people—people whose differences no longer exclude them from the world of the majority.  “We all” would be richer for it, from an economic, cultural and an individual perspective.

Yet our society is engineered with the majority in mind—the technologies and accommodations we as a people devote most of our energies to are those that the majority requires and the majority demands.  Those who engineer our society impair those who need different technologies and different accommodations, often doing so unconsciously and unintentionally.  It never occurred to the majority that it should be any other way.

Is that really what we want?  Is that the people we want to be?  I know I don’t.  Do you?

From the minority perspective, this language describes experienced differences.  In other words, the discrepancy is real.  However, this does not make the concept of privilege (as used in this context) real.  It is this concept I seek to address.

Consider a few of the dictionary definitions of privilege:

1. a right, immunity, or benefit enjoyed only by a person beyond the advantages of most
2. a special right, immunity, or exemption granted to persons in authority or office to free them from certain obligations or liabilities
3. any of the rights common to all citizens under a modern constitutional government

The dictionary definition of privilege does not support the use of the word in the context of a discrepancy between the majority and the minority.  For example, men tend to be assumed competent in work situations whereas women are more likely to be assumed incompetent in the same situation.  The men who are assumed competent are not privileged; the women who are assumed incompetent are disadvantaged.  There is a subtle, but significant difference.

Consider a few of the dictionary definitions of disadvantage:

1. absence or deprivation of advantage or equality
2. to subject to disadvantage

The word disadvantage more accurately describes the discrepancy of treatment.  Being privileged suggests that you are getting something you shouldn’t have, that you are being treated as special or above the norm.  If you are assumed to be competent at your job, you are not being treated special and you are not being assessed as above the norm.  You are being treated fairly.  On the other hand, being disadvantaged suggests that you are being denied something you should have, that you are being treated as inferior, below the norm.  If you are assumed to be incompetent at your job, you are being denied fair treatment.

The majority is not being given special rights above what most receive.  The minority is being denied rights and privileges (3^rd definition listed) that they are entitled to and put at a disadvantage.

So, the use of privilege to describe the discrepancy between the majority and the minority is linguistically and rhetorically incorrect.  Perhaps more importantly, it’s also politically damaging.  When you accuse someone of being privileged, you are saying they have a benefit they are not entitled to.  This puts that person on the defensive.  Unless they are highly sympathetic to your cause, they are going to resist your false accusation and miss your valid claim of discrepancy of treatment.  You are discredited for making a false accusation; the real meat of your message isn’t even heard.  On the other hand, if the person is highly sympathetic to your cause, they are going to feel guilty, because they’ve internalized your false accusation and will feel responsible for having a benefit they shouldn’t or, more accurately, for having the benefit you were denied through no fault of their own.

Whether the individual you accuse of being privileged is sympathetic or not, a statement regarding privilege implies that individual has done something wrong by being “privileged.”  They’ve done nothing wrong (at least, not by accepting their “privilege”), because they are being treated fairly.  The wrong is not in the majority having privileges (3^rd definition again), but in the minority being denied these same privileges.  Thus, the majority isn’t privileged (1^st or 2^nd definition), the minority is disadvantaged.

People need to understand the discrepancy of treatment between the majority and the minority.  When you’re in the majority, it’s difficult to imagine that those ordinary, every-day benefits you take for granted are denied to others on the basis of spurious reasons like skin color, gender, sexual orientation, or neurological makeup.  People need to learn about the real examples of these discrepancies.  Listing the benefits they enjoy and take for granted that are denied to others is an effective way to make people aware of the real discrepancies minority groups experience.  But calling them privileges is a mistake.  It conveys the wrong message.  It is inaccurate, because it is the wrong word.  Leave privileged to the powerful few—the senators and CEOs, the princes and dictators, the celebrities and the tycoons—and stick to accurate words that describe the majority, like benefits, rights, and advantages.  The difference may be subtle, but truth is powerful.

Perhaps a better vision is a simple teapot.  “I’m a little teapot, short and stout…hear me shout.”  We fill the teapot with water and set it to boil.  When it’s hot, it steams, and the steam goes through the opening and makes a whistling sound that calls us over to brew our tea.  Letting off steam is not only functional; it is built into the design to serve a specific, automatic purpose.

And so, as I look around at all the bloggers who, upon on occasion, take a jab at the neurotypical world—making fun, building their fan base with a little humor—I try to see a teapot.  But I’m not very good at making pictures in mind.  In fact, I cannot.  I spin words and concepts and feelings, and from them I shape pictures with the words I place on the page.  Overwhelming any picture I try to construct in this manner is the feeling of sorrow and regret that comes creeping over me.  These jabs are not a functional little teapot, however normal and understandable they are.  These jabs are not “neurodiversity at its finest” or even “neurodiversity at its worst.”  In fact, they cannot represent neurodiversity at all.

In an earlier post, I said:

5) You cannot claim to value diversity and dislike individuals or groups based on traits beyond their control.  For example, you cannot dislike someone who embarrasses you by having a seizure in public and still value diversity.

Every time a neurologically atypical person makes fun of a neurological typical person because they’re neurotypical or attributes an entire set of behaviors to neurotypical people on the basis of a few representative examples, you are divorcing yourself (at least, for a little while) from the concept of neurodiversity.  If neurodiversity, as per the meaning I proposed, is something you believe in, then you betray your own beliefs by doing this.

I’m not point fingers or citing names.  My pot is just as black as your kettle, and I know that.  It’s a very human pattern of behavior.  We let off steam, especially in the face of adversity.  It’s normal.  It’s natural.

But it’s wrong.

It’s an act of prejudice.  It’s counterproductive to the concept we purport and support.  And we weaken ourselves every time we give in to this impulse.  And we know better.  We really do.  We can say we don’t, we can justify ourselves, but these are excuses.  We know better.  If we didn’t—if our standards weren’t set higher than this behavior allows—we wouldn’t be demanding respect, acceptance, and dignity for neurologically atypical people.  We do know better.  Respect has to be mutual; it has to go both ways.

The stereotypical neurotypical person erects barriers for others, wrapping themselves in ignorance and privilege, ignoring neurologically atypical people, and forcing their ways on us.  It happens.  There really are people like that.  But, it’s also a stereotype.  The people who behave in this way represent only themselves; they do not represent neurotypical people and should not represent neurotypical people in our minds.  If you do not recognize that or cannot acknowledge that, then you do not support neurodiversity as I define it.  If you support any semblance of neurodiversity it is strictly on the basis that the concept empowers you.  If that is the case, please stick to empowerment.  You do not have to respect diversity to advocate for empowerment of unprivileged individuals.  You do have to respect diversity to advocate for neurodiversity, otherwise you’re just a hypocrite and there’re enough of those in the world, thanks.