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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?

Light Box

  • Posted on July 1, 2013 at 10:00 AM

My brother, Patrick, is a fabulous uncle to his three autistic nephews.

Now, in our case, we’re luckily enough to be blessed with a really understanding, supportive family who not only accept that our boys are different, but go out of their way to accommodate these three precious members of the family. We’re surrounded by this loving effort year-round, on all sides.

And I know this is a substantial blessing, because I talk to other parents and am often saddened to hear how other autistic children are excluded from events shared by their families. I think back to when the boys were little and none of us knew what was going on and remember just how hard it all was for everyone. So, I get it. I do.

But, at the same time, I don’t, because once we knew what we were dealing with our entire family made an effort to include these three special children. No ONE, not even one member of my family, has made my boys unwelcome. It took effort on all our parts, but the effort was made. And it works. Sure, our family events are different than they otherwise would be, but they do work. And, believe me, I know how lucky we are and how very blessed we are, because I couldn’t do what I do without all this wonderful, heart-warming support.

So, it’s not like my brother is a novelty when it comes to embracing my children as they are.

And yet, my brother is a novelty, because he gets my boys in a way that nobody else does, that nobody else would think of. Including me. Including Mark. Patrick understands a part of them that is its own special connection. And I’m constantly astounded by this, because he’s able to do this despite the distance that often separates us all.

My brother came for my commencement ceremony and during this visit the magic happened with a light box. Technically, a light box is not a toy. It’s a fancy tool that artists and architects use to do work. Patrick had one, and he decided to give it to his nephews.

M – A – G – I – C

It’s that simple.

Willy was fascinated. Alex was captivated. And Ben…adorable Ben. I turned around and saw Ben listening to the light. He was smiling, enjoying it, and listening to the light. I haven’t tried, so I don’t know if I could hear what he heard. But…that was so Ben and so strangely appropriate.

M – A – G – I – C

I can encourage my boys in their art. I can supply them with materials. I can look for opportunities. And I’m not alone in this. Many members of our family have contributed to their love of art, which gives them such joy.

But my brother understands this on a deeper level. On a light box level. And it’s its own kind of magic.

Generalizing Acceptance

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

Willy came out of nowhere and said, “I feel bad about Stephen Hawking. He can’t walk or even move his mouth.”

Wow, where did this come from!?! I sat Willy down and asked why he felt bad for Stephen Hawking.

“Well, Stephen Hawking is very smart, but he can’t move. I wish there was a way for me to help him. But he’s already dead.”

(Later, in trying to confirm that statement, I discovered that Stephen Hawking was the victim of a death hoax. So, he’s not dead, but there’s still nothing Willy can do to help him.)

I said, “So, you pity Stephen Hawking because he’s disabled, is that right?”

“Yeah, I guess so.”

For the last few years, Willy and I have been talking about disability. In particular, we’ve talked about how Willy is disabled, but that being disabled doesn’t mean what many people think it means. He understands this as far as this idea applies to him, but this is the first time I’ve faced clear evidence that he has not yet learned to generalize the idea to others.

So, I said, “Willy, do you want people to feel bad for you because you’ve got your brain instead of someone else’s?”

“Well, no.”

“But you feel bad because Stephen Hawking can’t move.”

“Yeah.”

“Do you feel bad because Alex can’t talk?”

“Yeah, I do, because that’s hard.”

“So, you don’t want people who are more ‘abled’ than you are to feel bad for you, but you feel bad for those who are more ‘disabled’ than you are?”

Willy said, “yeah” again, but his voice dropped slightly in pitch. If he was familiar with the phrase, he might have said, “Well, when you put it that way…” Instead, he sat there thinking silently to himself.

“Do you see what I’m getting at?”

Willy shook his head. “Not yet.”

“Maybe instead of feeling bad that Stephen Hawking can’t move and that Alex can’t talk, you should be glad for what they can do. Even though Stephen Hawking can’t move, he’s really, really smart—”

“Yeah,” Willy said, “he’s almost as smart as me!”

I laughed, “Well, actually buddy, he’s probably a lot smarter than you. He’s certainly smarter than me. He’s smarter than Daddy. He’s smarter than anyone I know. So, he’s probably smarter than you, too, because he’s really, really smart. And so, even though Stephen Hawking can’t move, he can think really, really good, better than lots and lots of people. So, instead of feeling bad that Stephen Hawking can’t move, maybe you should feel glad that Stephen Hawking can think so well. And maybe instead of feeling bad that Alex can’t talk, maybe you should feel glad that Alex is so funny, because Alex is really funny, isn’t he?”

Willy thought about this and nodded, “Yeah, you’re right. Alex is funny and Stephen Hawking is smart.”

“So, instead of thinking about what people can’t do, we can think about what people can do. Instead of feeling bad for what they can’t do, we can value them for what they can do. Make sense?”

“Yeah,” Willy said, “I like that. That works.”

As Willy got up to walk away, I couldn’t help but add, “Besides, if I were to feel bad for Stephen Hawking about anything, I’d feel bad that he doesn’t know God.”

Willy’s mouth dropped open. “He doesn’t!?!”

I shrugged, “Nope.”

And then, just to add a twist, Willy said, “L-O-L.”

I bit my tongue to keep from launching into another futile lecture about the usage of “lol” and what it really means. For the life of me, I can’t convince Willy that it is NOT the equivalent of “wow.”

Review: Blazing My Trail

  • Posted on November 28, 2011 at 12:00 PM

Rachel Cohen-Rottenberg’s book, Blazing My Trail: Living and Thriving with Autism is a sequel to The Uncharted Path. This memoir picks up where the other left off, providing new information and insights that will help to put the first book into perspective. Most importantly to me, it follows up on her description of burn-out. In my opinion, her new understanding and her recovery were what made a sequel essential. Like The Uncharted Path, this is a self-published book available in soft cover and e-book formats. It’s a text-based book; I do not remember there being any pictures and a quick scan didn’t reveal any.

In Blazing My Trail, Rachel approaches autism from a slightly changed perspective. Instead of focusing as thoroughly on her struggles as she did in The Uncharted Path, Rachel focused on solutions, accommodations and living with autism. The distinction, though subtle, is significant. Blazing My Trail is definitely a book about hope and about acceptance; whereas The Uncharted Path was a book about understanding and accommodation. In the first, Rachel struggles; in the second she thrives.

While I find Blazing My Trail to be a necessary sequel, and I’m very grateful for the book and its timing, I can’t help but feel that something is lacking from the book. The first book stuck with me. I can close my eyes and I can recall the experiences revealed throughout the book. There is an intimacy and an awareness that seems rather lacking in the second. Perhaps it’s just my experience and the distressing nature of my own fears, but I can remember little from the second book after her medication revelation without flipping through the book for a refresher. There is less cohesion to this second book; each chapter seems more distinct from the others. Yet, as individual essays, these chapters are each significant in and of themselves.

Perhaps a second reading will reveal that this feeling of disconnectedness stemmed from me and not from the book itself. At the same time, I cannot recommend the book as a stand-alone experience. Its significance is in direct relation to its predecessor.

Nevertheless, Blazing My Trail is a beautifully written sequel that is highly recommended to everyone who wants a continuation of the story they read in The Uncharted Path.

Unaware

  • Posted on May 23, 2011 at 10:00 PM

Apparently, it’s Mental Health Awareness month.  Don’t you feel more aware and stuff now that you know that?  I certainly do, or, um, well, not.  See, I’m not a big fan of awareness months.  It started with my first taste of Black History Month.  I don’t remember what grade I was in when I noticed the libraries featuring books in celebration of Black History, but I do remember thinking:  “So, what, they don’t have a history the other eleven months?”  And, sadly, according to the education I received (totally public, if you have doubts), that’s pretty much true, too.  It’s like, prior to the Civil War, there was no black history and between the Civil War and the Civil Rights Movement there wasn’t any either.  Now, one could assume that people with black skin didn’t do anything important in the intervening time—and I suspect some people have/do assume just that—but, that’s really just ignorant.  And so, I have to wonder, does a Black History month really change the prejudice and bias of the eleven other months?  No, not really.  So what, exactly, does it accomplish?

And, while I’m asking, what is the purpose of a Mental Health Awareness month?  It seems to me, whether the special month is set aside for autism, mental health, or black history, the purpose is to highlight how much the mass audience really doesn’t care.  Okay, so, yes, they care enough to give us a month.  Whoop-tee-doo.  And so, what, it just goes away the other eleven months out of the year?  For them, maybe.

Actually, for some people, that’s exactly it.  Some people have the luxury of being unaware of mental health 100% of the year, so—to make themselves feel like they care—they take a month out of their otherwise blissfully unaware lives and…what?  Raise money?  Talk about mental health?  Something?

Now, I’m sure some of you are going to say that I have it all wrong.  This is a month where people with mental health challenges raise awareness among those unsuspecting healthy minds and build acceptance and understanding.  Sure, well, maybe that’s the point, but it’s May 23 and I heard about this awareness month on the 20th.  In other words, though I have mental health challenges and am married to a man with mental health challenges, I was blissfully unaware of this month for 2/3rds of said month.  So, if the job is to actually raise awareness, mission totally not accomplished.

Maybe it’s just that May follows so closely after April, but I’m tired of awareness campaigns that are here and gone, accomplishing no real awareness in the meantime.  I’m tired of the “Oh, but we didn’t knows” that fail to disguise the real message of “Oh, but we don’t really care.”

Mental health, autism, black history, and all the rest…they’re here 24 hours a day, 7 days a week, 52 weeks a year.  If we, as a society, could really admit that to ourselves, then we wouldn’t need to set aside a month for any of them.  I’d rather be unaware of the month and be aware of reality, but maybe that’s just me.

BADD 2011: A Glimpse of Success

  • Posted on May 1, 2011 at 6:07 PM

Perhaps it’s the timing, perhaps it’s my unpreparedness, but I’m going to share a recent, deceptively simple success story.  The Goldfish hosts Blogging Against Disablism Day on May 1st every year, as she has for several years now.  So, you’d think I would be prepared.  You’d think I would realize that BADD is coming up fast.  Unfortunately, considering my hiatus and the time it’s taken me to get back in the swing of trying to keep track of all the blogs I enjoy reading, I find myself caught a bit unprepared.  Normally, I would take this as an opportunity to veer away from the easy-come-easy-go of family anecdotes, and concentrate on something deep and important.  But, maybe, I can do both.  Either way, yesterday (Saturday, April 30th), is worth writing about.

As some may know and many probably don’t, I’m the mother of three children with autism, I’m the wife of a man with a diagnosis of bi-polar disorder, I have diagnoses of depression and OCD myself, and both my husband and I are somewhere near the autism spectrum too.  Our disabilities are not physical.  You cannot look at us and say, “Hey, now those people are disabled!”  (For those who don’t get the point of this who BADD thing, you shouldn’t be saying that anyway, but that’s not my point.)  The point is, in big ways and in small ways, I find myself constantly advocating for the need for accommodations and for advocacy itself.

{I’m not, by any means, trying to suggest that people with physical disabilities have it easier.  I am well aware that just because a need is readily apparent, doesn’t mean it will be considered or accommodated.  I still remember, quite clearly, and in part from expanding my personal blogging community to a wider array of disabilities, the moment I looked at one of those bathrooms—you know, the ones with the sign—and realized that no matter how accessible it was inside, there was no practical way for someone in a wheelchair to OPEN THE DOOR independently.  I remember the light coming on in my head.  I remember that moment of insight, and the indignation that followed, with “How dare they advertise this as accessible!” reverberating through my skull.  And, while that incident was special for me, in the sense that it got my mind to shift, it was far from an isolated incident.  So, I’m not belittling the advocacy needs of those with physical disabilities.}

I do, however, get so very tired of having to justify over and over and over and over again why my family has advocacy needs to people who just don’t get it.  It is tiring.  It is exhausting.  And sometimes small moments of ease are the only things that keep me going, keep me hoping.

So, what does that look like?  Success?  Ease?

Yesterday (Saturday, April 30th), my husband had some friends over to do some role-playing.  This is something they try to do every weekend.  Like a guy’s night in, instead of a guy’s night out.  So this, in and of itself, was nothing extraordinary.  One of the guys is a long-time family friend.  He was at our wedding.  Our kids are good friends; they’ve grown up together.  His wife has been a therapist for our children.  They’ve babysat.  Or, to be brief, he knows what he’s getting into when he comes over.  The other two are newer.  They’re both a bit odd (for me, that’s a compliment), but they’re odd in ways that are not our ways (which is just fine with me).  And so, again to be brief, they still really don’t know what they’re getting into when they come over to our house, but they’re willing to risk it.

We usually have a bit of preparation for these nights.  We know the day is coming.  We build up to it.  It’s usually on Fridays.  And, well, this time we really didn’t and it wasn’t.  Or, to be brief, it was not an ideal situation.

Mark’s sleep-cycle was wonky and the kids were a bit wild.  Usually, this would be a problem.  For your random individual (or group), this would be a problem.  Surprisingly, this time, it was all okay.  It worked.  The night was a success.  (The gaming was not so much, but that’s a whole ‘nother thing for a whole ‘nother blog, which I’m not going to write, but hey—role-playing can be tough.  It is, after all, storytelling, but with free will.)

This is not to say there weren’t problems.  Mark fell asleep twice during the night.  The boys’ had issues that needed to be dealt with, including Willy not wanting to play anymore, including Ben trying to push a chair down the stairs, including Alex pinching our guests.  And, well, a complete list isn’t the point.  There were issues.

But they weren’t a problem.

Novel, I know, but it’s true.  The boys’ needs were discussed, as they often are around people who haven’t known them long enough to be fully versed, but they weren’t an “issue.”  Everyone just sort of went with the flow and it worked.  When explanations were necessary, they were given, they were accepted, and we moved on.

It wasn’t:  WOW!  YOU PEOPLE ARE WEIRD!  It wasn’t even:  MY FAMILY IS DIFFERENT AND THAT’S OKAY.  It just was.

And, for me, that’s success.  Explanation.  Acceptance.  Move on.

Maybe it’s lack of imagination, but I really don’t envision a time where everyone just understands.  I communicate with a lot of people with a lot of different kinds of differences, from disability-related differences to faith-based differences, cultural, racial, life-style…and on and on.  I try hard, but I don’t just understand.  I need things explained to me.  I need the stories.  I need the shared-experiences.  I need those moments of insight.  And I expect that I always will.  I don’t think that’s just me, either.

The thing of it is, I do believe there will come a time when everyone—or at least the majority of people—will be open to having things explained, to listening to others’ stories, to sharing experiences, to moments of insight.  I think that will happen.

And it’s going to look a bit like last night did.  An easy, comfortable exchange; welcome to my life, beware of the pinching; yes, we have alarms on our doors, because our children will go out to look at the cars…the ones that are moving.  This is our life.  We’re open to sharing it.  But it’s so nice when our differences are not a big deal.  They just are.

Not Passing

  • Posted on September 7, 2010 at 6:50 PM

Earlier this year, I finished up four years of college in pursuit of a bachelor’s degree.  It was a great accomplishment for me, but it also thrust me into uncomfortable territory.  During those four years, I went to campus once—and that was just to take the test to get in.  Even my graduation ceremony was held off campus.  All my classes were online.

But graduate school will be different.  In order to get the graduate degree I want, I will have to take most (perhaps all) of my classes in person, on campus, amongst my fellow students.  Yes, that’s right.  I will actually leave the comfort of my own home and go out amongst strangers.

Now, I’m not sure how aptly “passing” applies to my situation.  As I’ve said before and will undoubtedly say again, I have no diagnosis of autism and, unless the medical services structure catches up, I’ll probably never be evaluated for a diagnosis—as things are now an adult diagnosis simply requires too much effort.  So, I’m not deemed to be on the autism spectrum.  However, I’m not neurotypical either.  Along with a history of mental health issues (depression and anxiety, mostly), I experience sensory stimuli differently from most people—something I was only able to figure out after my children were diagnosed with autism and sensory integration disorder.  Since I have figured it out, I’ve been able to consciously develop coping mechanisms.  I’ve thrown off the shackles of not-coping and use the coping mechanisms that allow me to be who I am without being overwhelmed, at least when I’m at home.

But what should I do about graduate school?  On the one hand, part of the purpose of attending a written communications program and getting a graduate degree in writing is to participate in the writing community.  You meet people who write and that helps improve your craft and also improves your long-term chances of a making a living writing by finding people who take an interest in your work.  That’s the idea anyway.  Fitting in (thus blending in) has something to do with that—not that I’ve ever understood what that really means or how one really goes about it, but it seems to be how our society works. 

On the other hand, my odd-seeming coping mechanisms help me concentrate.  They help me focus my mind on what I’m listening to instead of being distracted by the background sounds or the sensations of my own body.  Strange places can be very distracting with their white noises that aren’t my white noises.  If I can’t cope, then I can’t concentrate, and if I can’t concentrate, then I can’t learn—so what’s the point?

Besides, I’m more or less comfortable being who I am, so why should I hide that when part of being who I am makes me the writer that I am?

So, I made a conscious decision not to pass.  My first day in class, I took off my sandals and sat in my chair with my legs folded under me.  I got a few, brief looks, but that was about it.  I organized myself using a few different strategies that work for me.  People noticed, but nobody seemed to care.  I thought to myself that I’d be okay as long as nothing major happened.

Then, one day, I was talking with one of my peers when there was a malfunction with the multi-media equipment.  The equipment emitted a loud, long, high-pitched whir.  Everyone was annoyed.  I was beyond annoyed.  This was a sound I could not tolerate.  The sound crashed into my head and shattered every single thought like glass.  The shards of glass cut into my brain.  And everything hurt.  The sound was physically painful—not just to my head, but to my whole body.  It cut and cut and cut into me.  And when everything was cut to pieces, the sound cut the pieces to pieces.

I covered my ears just like I’ve seen my boys do so many times and I cowered in on myself.  I squeezed my eyes shut as if I could squeeze out the sound.  It seemed the whole world disappeared, except for the sound and my need to block it out.  But it still made its way into my head—weaker now with my hands over my ears—and it still hurt.  I don’t know if I made a counter-sound to try to drown it out.  I might have, but I don’t know.  I couldn’t think.  I couldn’t plan.  I couldn’t strategize.  For those long, drawn out moments, the rest of the world was just gone.  It was like my entire nervous system was in melt down mode.

And then, after several minutes, the sound stopped.  Nobody stared.  Nobody did anything.  The peer I was talking to simply resumed our conversation where we’d left off when the sound started.  However weird my behavior may have seemed, I was accepted just as I was.  No snide comments.  No put-downs.  No weird looks.  I was just accepted.

Maybe it’s that I’d already talked about my kids by then.  Maybe it’s that my peers are, for the most part, older than your average college student.  (The median age at my school is 38.)  Maybe it’s that one of my peers worked with kids on the spectrum and another is a psychology professor.  I don’t know.  But I’m not worried about whether I made the right decision in not passing any more.  I’m much more concerned about making an effort to be social—but that’s a whole different thing.

What Are Accommodations?

  • Posted on July 17, 2010 at 9:25 PM

For anyone out there waiting with bated breath for my third post on organization, I must apologize; this isn’t it.  I got distracted—not a good commendation for my organizational skills, but there it is.

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.

Impacting Language

  • Posted on May 30, 2010 at 10:27 PM

As a writer by trade, language is frequently on my mind.  Usually, though, I think about ways that we might change the language in common use.  Then, there are those bright moments when I see that the change is already occurring.

Saturday evening I attended my nephew’s high school graduation party.  I’m certainly proud of his accomplishment and the decisions he’s making to help shape his future.  But as he sat around with his friends, I observed another reason to be proud of him.  Generally speaking, I appreciate the wonderful people these children are as I’ve seen them interact with their cousins, my children (okay, two of them are now grown children!).  I can’t say how much coaching it might have taken, but they’ve always accepted their cousins for who they are—limits, challenges and all.  I appreciate that and am very proud of them for it.  But today it was a little thing that caught my attention.

This nephew sat around the table with his friends.  Ben ran around squealing with excitement over the new areas to explore.  The friends talked on, until one of them swore in an off-hand kind of way.  My nephew, conscious of his little cousin, said, “Watch the language!”  A moment later, another friend made a comment about drug-use.  “Watch the content,” my nephew exclaimed in theatrical exasperation.

It seems like a little thing, and maybe it is, but it says something wonderful about his character and his choice of friends that he felt comfortable to make his point.  I also appreciated his manner and approach in doing so.  A gentle reminder—performed well and complied with.  The issue was important to him, but he didn’t need to make a big deal of it to get his point across.

More recently, I was putting in some time freshening up on my grant writing studies.  A small subsection, on style and usage, made a quick, short comment about “political correctness.”  In a few short paragraphs, with a similar important-but-not-a-big-deal approach, the authors gave a lesson on respecting people with regard to race, gender and ability.  The reason it struck me is because their manner wasn’t one of qualification—this is the language you’re expected to use—but instead carried a subtle but discernible undertone of respect.  They didn’t say this just because it had to be said; they mean it.  I especially like this part:  “Don’t sensationalize with phrases such as ‘afflicted with,’ ‘suffering from,’ or ‘victimized by.’”

Don’t sensationalize…  With those two words they make a great, but subtle point.  Not unlike a young man who’s comfortable enough to stand up for his values and the values of his family without making it seem like he’s taking a social risk by doing so.

Our language is changing; our ideas are changing.  Sometimes it seems slow.  Our culture still has much progress to make.  But it’s happening.

The (Un)Importance of Words

  • Posted on May 10, 2010 at 2:20 AM

Don’t get me wrong.  I love words.  I believe the words we use and the way we use them are very important.  But, when it comes to the issues of disabilities—acceptance, inclusion, empowerment, and accommodations—words are of secondary importance.

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.

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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 1st, though, so you’ve got to be quick!