4/30/2013

Bad Attitudes, Platitudes, and Ignoring the Reality of Disability

It's a constant quote going around the disability community: Scott Hamilton's "The only disability is a bad attitude." Of course, it's usually coupled with the picture of an unnamed child with a disability, and it tends to get two reactions: passed around as a positive message or harangued as inspiration porn.

What bothers me most, though, is the quote itself. According to Cleveland Clinic, Hamilton said it before undergoing treatment for testicular cancer. You know, an able bodied person saying this. A cancer diagnosis does not make a person disabled in and of itself.

Whether Hamilton meant to suggest that non-able bodied people were only disabled because they had a no-can-do attitude or not is unclear, and the quote, uttered in 1997, has gone on to have a life of its own.

It's a comforting thought--that if we have a can-do attitude we can overcome disability, but it's bullshit and unfairly stigmatizes those individuals who are disabled, remain disabled, and for whom no amount of can-do attitude is going to overcome a hostile environment and serious, significant impairments.

It's also a platitude, a saying that means nothing at all and offers no real help to individuals who might be suffering. Say it to someone enduring unremitting depression. Go ahead. If the person isn't too down in the dumps to clock you, maybe one of his family members or friends who understands the chains depression puts on a person will. And then you can comfort yourself with that empty platitude. See where it gets you.

There is much we can do to mitigate disability. There is a lot, when given the opportunity, the support, the technology, and the education, that we can do as a society to lessen disabilities, even if impairments cannot be cured/removed.

And certainly, having an attitude that is positive will help (and that goes for everyone--we must believe that we can make a difference, can create a more inclusive, accepting society), but it isn't like clicking our heels three times and just wishing so.

Any meme that goes around objectifying unnamed disabled individuals while pushing platitudes, in the end, does an injustice to us all.

And Now for the Naughty in Nature

My mother has a century plant in her yard (well, now it's several), and almost every year, this giant purple asparagus-looking shaft begins its majestic rise.

And you know to me it looks like a giant purple penis, because I'm that kinda gal. I'm still limping around, so I sent Lily out to take a picture of it, but she couldn't figure out what I was talking about (I called it a purple asparagus), so Bobby grabbed my phone and went out. What resulted was proof that the apple doesn't fall far from the tree--he saw my purple penis and raised me vagina trees.

Seriously. Courtesy Bobby, who never ceases to surprise and who can certainly frame a picture:


 







4/29/2013

Describing Communication Levels when Woo Mixes with Legitimate AAC

Definitions for most terms relating to autism-land vary depending on the persons and groups using the terms. Biases are clearly at play here.

To some, autism and Asperger's aren't kissing cousins and don't belong anywhere near each other. To others, they are one and the same, on a continuum.

Functional levels vary, along with the terminology used to describe those levels. There's no clear consensus on what high, low, mid functioning are and what's required to be there. Where does intellectual disability fit in the functional levels? Again, depending on who you are and what flavor of autism is in your life, your belief about autism and intelligence will vary.

It's the same when it comes to terms like preverbal, nonverbal, and verbal. If your child uses sounds to communicate needs and emotional states but not formal language, is she preverbal or nonverbal? How many sentences, how long must they be, and how many words in her vocabulary must a child have before she swings from the non-verbal category to the verbal?

If a person can talk but chooses to use AAC instead, is the person properly nonverbal or verbal? Who gets to decide? Who gets to do the describing?

Autism Speaks (only because it was convenient) describes nonverbal persons as unable to "functionally communicate with others using their voice."

I guess that means that if a person is capable of using his voice, speaking words, but impaired in communicating needs and wants, that nonverbal could be used even if the person actually has an array of words, can string sentences together, and make himself at least understood in the sense that the words are understood.

With facilitated communication, as taught by Biklen and associates, an autistic individual can have a range of oral/verbal communication, can even type independently, and still find himself being facilitated. The person can even be talking at the time of facilitation, and the facilitator will strongly advocate that it is the facilitated text and not the speech that should be attended to. Well, that certainly makes the describing process interesting, doesn't it?

Who gets to decide if a person is nonverbal or not? Those in a position of power over the individual, apparently. That means parents, caregivers, treatment providers. That can come in handy if the vocal utterances counter the written communication, certainly, and becomes another way that autistic individuals are denied autonomy. But most people aren't in this particular situation, as FC remains outside the norm (although if the media keeps sharing the feel-good stories without engaging the sniff-test, that may change).

With one of the major descriptive categories of autism being impaired communication, even the most eloquent and loquacious of autistic persons might have some difficulty with making sure their speech is suitable functional--that it communicates what they want it to and that the message is received intact by the listener. Let's be real, though--that's true of all of us, no matter where we fall on the spectrum or off it.

So, again, how do labels like nonverbal and verbal get assigned? When is it a shorthand by parents to indicate limited speech and when is it an exaggeration? I mean, if a person has limited speech, then why not just say that?

What if a person is not only lacking the ability to communicate verbally in a known, taught language but also lacks written language? AAC devices and PECS are so important for allowing for needs and wants to be communicated.

Does it matter if our descriptors of those in our care are inaccurate or changing? If there's a lack of consistency?

I think that, just as the issue of intelligence is one of serious controversy in the autism community, so too is the issue of one's verbal or nonverbal state. Whatever the communication method, whatever the level of fluency is, it's important that we try to be accurate and specific in our descriptors.

And some times, many times, that means defining what we mean.

Bobby was nonverbal when younger and severely delayed--he had utterances,and two specific utterances that he used to communicate a variety of needs, but it wasn't until he was four that he began to really speak English. His speech is still impaired, and in some cases, he has a pronounced difficulty communicating. Giving him a device to write isn't going to help since he has a hard time spelling. I suppose I could grab his hand and guide him, but I think I'd get put in my place quickly if I tried. And those who know Bobby and who are lucky to talk to him about his interests will have no idea whatsoever that he has an impairment when it comes to communicating.

Ask him to describe where something hurts, though, or name body parts, and you'll find out he's got some significant communication gaps. Move on to feelings, and you'll really see it. Ask him to talk to someone he doesn't know about a topic that isn't a special interest, and you see him at the height of his autism.

Rosie, at times, chooses not to talk. Does this make her nonverbal? She could talk if she wanted to. She's not being defiant in her refusal, but all the same, she's not going to talk unless it suits her. Since she can use speech to functionally communicate her needs, wants, opinions, and disapproval, her choice to sit out verbal communication would not indicate her being nonverbal overall and I think it would be inaccurate to label it such when she chooses not to speak.

Now Lily can get completely overwhelmed and not be able to talk--she just shuts down. Is that nonverbal? Again, I don't think so.

I think that if we're going to be precise when we talk about our children, we need to be willing to move past one word descriptions that are unavoidably inaccurate. If our child speaks, communicates simple wants and needs with oral speech, then it is inaccurate to describe the child as nonverbal, unless it's nonsense syllables. If he's saying milk for milk, water, etc., you've got the beginnings of speech, and that, my friends, is not nonverbal.

If you've got a teenager talking away and a facilitator holding him by his hand and there's typing going on that contradicts what the teenager is saying, you've got woo, not his true communication.

Being careful, taking the time to accurately describe our children's ability to communicate (in any of the many ways there are to communicate) is important, I think, not only when we're working with teachers, caregivers, providers, etc., but also when we're putting our story and our children's stories out there, when we blog.

It can be convenient to shorthandedly label a child as nonverbal in order to indicate severity, but ultimately it's a disservice to the child if it's inaccurate. After all, it's not a competition to see which of us has it harder or easier. Our children's autism isn't really about us--it's about them and we owe it to them to be accurate.


Jackie Boy and Four-Legged Family

Not everyone feels this way, but most pet owners do, I think: that our four legged friends (and two legged as may be--thinking Kathleen's chickens--I want chickens, too!) are family. We love them, cherish them, and they are, next to our children's hugs and kisses, the best therapy in the world. There's nothing like puppy kisses and cats purring our laps to help us relax our breathing.

It might even be worth the coughed-up hairballs and mysterious wet spots in the carpet.

We've lost some of our four-legged family members, too many in the last two years, and I've learned over the years to fear urinary tract infections in my cats. We lost Frankie to it, and battled it in Jackie and Danny this Christmas (while accepting that we were going to lose our Aphrodite to feline AIDS at the same time). You can imagine my fear when Jackie decided to let me know last week that he had another one--pawing ferociously at the closed shower door until I got up to see what the racket was, opened the door for him, and in he jumped and promptly squatted and peed bloody urine while staring me in the eyes.

Smart boy doesn't need to show me twice, although he repeated the activity the next morning just to make sure I'd gotten his point. I put him in the carrier and waited for Rick to get home and take him. 

Danny is always near his brother, so tried to keep as close as possible (and in the process bowing the carrier enough that the door won't stay in anymore), and Samantha wondered what Jackie was doing in her crate.




Fortunately, the shot seems to have cleared up this latest round, but I worry, given my history of repeat UTIs and permanent daily antibiotic regime (with still reoccurring infections), how long we'll have before we go through this again, and if we'll lose one of my ginger boys to this. It's a nasty infection in male cats, and Frankie was not the first cat I've lost to it.

All I can do is try to feed them the right food, keep an eye on them, and love the hell out of them while they are here. Which, if you think about it, is about all we can do anyway, be they four legged family members or our children and spouses. 






4/28/2013

Value and Angst

It's so close to being over, I count it as good as done. April dragged on, left me addled and frustrated, angst all mixed up with impotence.

Stories on the news talked about sufferers, bemoaned the families enduring their children's afflictions, and repeated Autism Speaks paranoid factoids over and over.

It even caught us in older shows, watched on Netflix; an episode of Numb3rs with a copycat Rainman and his exploitative relative had me yelling at the tv set pointlessly, as the damage was done years ago and can't be undone. I  watched the first episode of Hannibal, and had to hear autism invoked again, super powers attached, of course.

I don't mind having autistics better represented in the media, with more autistic characters. That's great and echoes the rise of gay and lesbian friendly characters in television. We need to see more diversity across the board, but they should be fully realized characters.

But, and here's the thing, is there really that much difference between an autistic superhero/savant (Touched, Hannibal) and inspiration porn. Isn't it what Stephen King's done for years in his novels, made the special needs individual the hero with mystical powers beyond the normals' ken?

It's a comfort, I guess, for some to imagine that those who appear to be unlucky enough to be different, to be disabled, to have some commensurate gift or skill that the normals can only dream of.

We like that--our literature, our fiction, our stories are all full of those with powers that rely on a state of difference.

It's hard to stomach the idea that someone could be severely disabled, non-verbal and completely dependent on someone else and not have some super ability to make up for that. It's that fairy tale emphasis, though, that most robs those who need assistance the most of their natural, innate value as human beings.

They aren't here to inspire normal people. They aren't here to serve anyone else's needs.

They are here for the same reason the rest of us are: we were born. Their meaning, their purpose, ought to be derived in the same way we derive our own: we decide our own meaning, our own purpose. Our value is not dependent on what we can do for others, what we can teach others, what we can show others. And how we value other people shouldn't be, either.




4/25/2013

For Frak's Sake

Minutes after I posted yesterday's blog, I went outside with Samantha on her leash. It had been a good morning. I was home alone except for all the critters, I had graded papers, paid some bills, written a perfectly nice post, and was going to work after I had walked the puppy.

And then the day's plans changed. I was standing in the driveway, the puppy happily trying to crunch gravel (no I didn't let her), and my left ankle buckled. I wasn't moving (although Kathleen theorizes that I moved slightly and my good --left-- ankle wasn't ready and "fainted" on me), just standing there quietly, thinking it was a pretty day and then I was on my ass, screaming, then crying, my forehead resting on said gravel while the puppy dug her way into the gravel with her little butt to me, completely ignoring my distress.

We live in what used to be the country, and what is still a quiet, rural neighborhood with little traffic. I lay in the driveway, alternating my crying (blubbering--not pretty) with laughter, because really? WTF? My cell was in the house, my neighbor was obviously not outside smoking, Kurt was tucked away in his trailer, and the damn puppy was ignoring me.

I thought about crawling on hands and knees to the house and up the steps, dragging the puppy on the leash. I decided against that.

I thought about hollering, but since the crying, laughing, and initial scream hadn't drawn any attention...

I thought about waiting for the mail lady to drive by...

for Rick to come home for lunch...

Sigh...

In the end, since the dog wasn't paying attention, no one was driving by, and time seemed to be tick-tocking incredibly slowly and I figured I looked kinda stupid lying in the driveway next to a puppy chewing gravel, I decided to try and get up and hobble to the house.


Still blubbering.

I've broken my right ankle--nasty open compound fracture. In Germany. At a frigging zoo, no less. I don't think I blubbered then.

I sprained the right ankle last year running to help a woman who'd fallen and ended up in a boot for a month.

I had a heavy CPU fall on my left foot and calf shortly after the right ankle sprain and had to juggle still being in a boot with the left leg injury. I didn't blubber then, either.

I think it was the absolute gall of it. There I was, doing absolutely nothing but STANDING and my left ankle said fuck it. And I collapsed.

Now, I'm not a big believer in maintaining my dignity--I'm too clutzy for that. I walk into walls and bookcases almost daily. I'm not graceful. If there's a way for me to trip, I can and will find it.

I have fallen on my ass at the college several times when shoes slipped off my feet for no apparent reason.

I'm an old hand when it comes to screwing up toes, ankles, feet. I had my own wheelchair until we were moving back to the states and we decided to give it back to the hospital. I've got my own cane. Heck, I've got my boot for the right foot! I even had my own wooden crutches until Rick cleaned out the shed of death (all the local mice, rats, and critters made it home) and tossed them. I warned him I'd need those crutches.

And a month later, boom. Needed them.

I got the puppy and me into the house yesterday, boo-hooing and feeling like I was 12. Hell, I don't think I boo-hooed like that when I fainted and fell down a flight of stairs and konked my head on the wall and needed stitches in 8th grade. Or when I wrecked the motorcycle that same year and broke my big left toe and hair line fractured my right cheek bone. Or when I took a tennis racket to my face and shattered my glass-lenses glasses and had to have my eye irrigated (again in 8th grade). 8th grade sucked.

I digress.

Still crying, I called Rick and wailed at him. He came and took me to the clinic, and I got nice new metal crutches and this black lace up sleeve/wrap/boot for my left foot, similar to this one, but not so fancy:

Shock Doctor Ultra Gel Lace Ankle Support,Black,large


So, I'm home, with Bobby to help, with my foot elevated and in its stylish "lace ankle support" with my crutches resting beside me, and my ass, quite frankly, hurting from its unexpected connection with the driveway.


At least I'm not blubbering.

4/24/2013

Time Travel

I hold onto things for years, obviously even for decades. I decided it was time to go through my closet and more than a decades worth of clothes, and Lily had a blast because some of those clothes were small enough sizes for her to wear. She's been dressing fancy at school these last two weeks and loving it.

It's been eye opening for so many reasons. I have had a huge problem with body image most of my life and never realized when I was thin that I wasn't fat. And when I was fat, just how fat. Several years ago, I literally said fuck it and removed any full length mirrors. If my mind was going to distort the image anyway, why look? Of course, that means sometimes I go out in outfits that, um, would have benefited from a preview. Oh well.

So I was looking through old photos to see if there were any images of me in the outfits Lily got, because I realized, if she's wearing them and she's not an ounce overweight, then I must not have been fat then. Never mind now. I know I'm overweight now, but I am thirty pounds plus lighter since the fall semester began. Yay diabetes meds!

This is from 2005. Wow. I was so gray and so not heavy.

 And this is a year later (2006), my weight slowly going back up, but...

Here is my Lily in the same outfit nearly seven years later.
Ah, we've all grown. And changed.





And there are parts of that growth and change, 
not just in the kids, but in me,
 that are bittersweet.

One thing is true. 
I am comfortable in my skin,
in my body,
with who I am, 
and that is a blessing
my children gave me,
taught me,
helped me realize.


It also should be acknowledged 
that my husband, who I have loved 
for twenty-five years now,
started that growth, that acceptance,
that comfort I feel in being me.
Whatever my hair color may be.


4/22/2013

Stillness: What Bobby Teaches Me, If I'll Just Listen

I don't like quiet moments, where there are no demands, no pressures. Did I ever? I don't know. I've been parenting for more than half my life, so I don't know that I ever had a lot of chance for quiet.

And when I did, when Bobby was a toddler and could spend hours lining things up and I could sit and write, well, all that's tied with guilt for not recognizing that his behavior was atypical.

Maybe that's why I have conflicted feelings about quiet time. I'm home this morning, with Bobby, and I feel the tension building because he's back in his room watching anime and I'm out here watching the news and writing this post. Shouldn't I be engaging him? 

And I remind myself he's 23, and not all of our moments together have to be about engaging him, that he's happy back there watching his shows, that he can be still. That he could teach me about stillness and learning to turn my thoughts off. And that's not a bad thing, that he can be still, that he can be completely in the moment, in whatever he's doing, even if that means he's not doing what he was supposed to be doing.

Yet, the tension builds in me, even with this realization. I have been conditioned to think that I have to keep the kids engaged, that drawing them out of themselves and their obsessions are an obligation. It's a little easier with the girls to let them be because they are interacting with each other, spending their hours drawing together, and it's easy to see that their activities increase their skills--they get better at drawing by the day. Still, though...so much of autism land has been pushing this idea of therapy, of sustained contact to pull them into the normal activities, that guilt is a constant, murmuring companion.

I think, though, how I would have felt if my parents constantly bothered me to get my head out of my books (had they not been just as immersed in their own) and I know that I need to let all the internal chatter about what I should be doing go and trust my instincts.

After all, my favorite times with Bobby are our car rides, when I pick him up in the afternoon, and after pleasantries have been exchanged, we ride in companionable silence all the way home. I'm still constructively engaged, driving, but in those minutes with him, I am at peace. We are able to be with each other in quiet acceptance, and it is a centering experience for me.

Maybe I need more car rides with him?


4/20/2013

Sincerity

When you live or work with children, sincerity is a way of being. Truths come out without censorship, until we socialize them that telling the truth isn't nice. It's not nice to say someone's fat. It's not nice to notice differences and comment on them. It's not nice to be honest that you don't like a present.

It's not nice. And so we learn as children to lie, to offer insincere well wishes, to make insincere offers, because it's "nice" to lie in order to spare people's feelings.

Except it's not nice. And it doesn't spare people's feelings. We learn to read through the bullshit, the insincere praise, the never-gonna-happen promises that society considers necessary social niceties.

It's when we take things at face-value, as people on the spectrum do, and find ourselves mystified when promised get-togethers don't happen, that the hurt creeps in and we learn to doubt people's words. We learn that people are insincere, that they lie because it's more convenient to do that than speak the truth, whatever it is.

Trust. There's nothing more important than trust--that we can rely on our loved ones to be honest--kind but honest. Our kids need to know that we will tell them the truth, that we will see their own honest statements in the light they were intended.

With over two decades of parenting children on the spectrum, and a husband who may not talk much but who doesn't lie, either, I've grown accustomed to frankness. I don't necessarily appreciate it all the time, but I'd far rather have that honesty than all the smoke in the world blown up my ass.

It's not the way the world works, too often. People pussy-foot around things. They avoid revealing their true feelings and instead disappear slowly from your life rather than be honest about something you've done that might have stepped on their toes.

I treasure my friendships where I know what I get from them is the truth. I lean on my friends--their honesty and willingness to trust me to handle that honesty keeps me sane. It also helps to keep me in check--it lets me have the courage to face inconvenient truths about myself.

Sincerity--it's an incredible gift that we can give to each other--to refuse game playing and offer only what is heart felt and true. Compassion and truth-telling should go hand in hand--truth should not be wielded as a weapon designed to destroy others. It should be offered up so that true companionship and inclusion are possible.

Acceptance--true acceptance requires sincerity and authenticity.