Scoot along, little lady

Image of folding scooter.

So, the big news is that I finally got myself a damned scooter.  Ever since I can remember, I’ve had a wheelchair to get around long distances.  The problem with the wheelchair – ever since I learned to drive – was how to get around in it independently.  As I’m sure you’ve noticed, wheelchairs are pretty cumbersome to lift into cars, especially when you measure 4′ and thus everything pretty much requires you to lift to shoulder-height or higher.  Try getting one of those folded monsters into a trunk!  It’s almost half my weight and close to my size. Thus, I have pretty much only used the chair when I’m with someone who can do the lifting, and the pushing.

That’s another problem: pushing my own chair with extra short arms that don’t straighten.  They can only lower the seat so much before the center of gravity is totally off, and tipping becomes an issue. To get the totally customized chair I would need to be independent in it (i.e. lifting it AND pushing it) would mean a $5,000 price tag ABOVE what insurance covers, because I’m not wheelchair-bound.

I feel like being disabled is an eternal Catch-22: too disabled for some things, not enough for others.  Insurance will cover this, but not that.  You can walk?  No fancy schmancy chair for you!  Oh, it kills you to walk long distances because you have the worst joints on the planet?  Suck it up!  Wait until you can’t function permanently, and then we’ll cover it, mmkay?

What about a scooter?  Have you seen how heavy those monsters are?  There’s a reason people need lifts for their cars.  1) I don’t qualify for the lift because I don’t qualify for the scooter full-time (i.e. I don’t use it in my house); 2) I really don’t want a mobility van, or a lift on the back of the Prius (it has a hatchback).

What the *@#$ do I do?  This was me this summer when I found out I had a semester to get through before I could have my ankle replacement.  Getting around campus on my own two feet last semester left me in great amounts of pain nightly; my quality of life was nil.  I knew I would be returning to teaching full-time, which mean hours on my feet in the classroom – even if I try my best to sit, there is something in my DNA that wants me to stand to teach.

I decided to look on the Little People of America (LPA) web site to see what advice they had about mobility devices.  And what did I find? A link to a miracle!  (Cue the music of descending angels).

Alan Rickman as the angel from Dogma.

Ba ba ba bum!  Enter the Travel Scoot!

Image of folding scooter.

This little sucker (or at least the version I got: Travel Scoot Shopper Junior) weighs in at a whopping 26 pounds fully assembled, and 16 pounds sans battery or seat.  And look how it folds!  Not only is it below the 20-lb limit my surgeon set to lift routinely for my shoulder replacements, but it folds up so teeny tiny and fits multiple places in my car.  And, I paid for it myself… no insurance coverage for that, mmmkay?

Now, life is magical.  End of post.

You clearly don’t know me, if you believe that crap.

When the scooter came this summer, I was excited.  I walked the dogs!  I scooted around stores.  I learned to unload it and unfold it in less than 5 minutes.  Life should be fantastic, right?  Well, this is where my lifelong attempt to avoid mobility aids rears its ugly head…

Those of you who’ve known me since before college grew up knowing me with crutches.  Yes, I used crutches from age eight (the age of my final and correct diagnosis) to the age of 18.  Those of you who’ve known me since before age eight also knew me with leg braces.  The sexy kind, like Forrest Gump…

Forrest Gump running while his leg braces fly off.

… though I never could run like him.

Why did I give up the crutches in college?  Oh, because I thought it was the chance for a new start and that I could fool people about the extent of my disability.  I told myself I only needed the crutches because our high school was so crowded and that I was so easily tipped over, which was true, in part.  If I had been truthful with myself in college, I would have admitted that my hips were already very painful and that distances without crutches were tough.  But, whatevs.  I had a bike!  No one would know.  I would be like everyone else on campus, yes I would.

I hobbled along through college, and I managed, thanks to a very accessible, inclusive, and small campus, and the bike, and then a car.  My hips were growing worse, but my surgeon had told me to hold off on hip replacements until I was in my 30s, if I could (I made it to 28).  I even started doing yoga in grad school and lost tons of weight.

However, the reality is that, as hard as I try to keep fit and healthy, it only goes so far.  My DNA is at war with my joints.  In 10 years, I have had 5 joints replaced, and the sixth will be in January.  I think that my attempts to leave behind the braces, the crutches, even the wheelchair, was an attempt to kid myself into thinking that mind over matter could work for my disability.  The reality is that 10 years on crutches, lifting myself into the car, on counters, etc. ruined my shoulders.  My bad hips ruined my knees.  And my less-than-stellar knee replacement ruined my ankle.

I’ve spent the last year coming to terms with the fact that, much like my early childhood, regular surgeries are the norm; it’s the years form 12-28 that were the abnormal.  I sometimes get angry with myself and think that if I had just given in and put my ache for normality (i.e. a normative body) on the back burner, I might have saved myself some pain and had more time between surgeries.  I needed a scooter in college, in grad school, and as a professor.  I need one to get around and not suffer.  So, why did I wait so long, even as an adult?

The answer is: the facade of normality.  I’ve spent so much of my life proving to people that I could do things they did not expect of such a tiny person that I couldn’t bear to let them see a chink in my armor.  Getting Max was the first step in my public admission that, no, I couldn’t do it alone.  And, I had to put up with a lot of people wondering why I needed him when I seemed fine.  I’d dug myself into a fine mess.  When I rode onto campus in August with the scooter, I didn’t use it as much as I should have, but then the first time I was able to run several errands in half the time as usual and not be in pain, I was convinced.

I still feel weird.  I still know people wonder why I have a scooter.  I know this because people ask or make comments.  People think something “happened” to me.  I just tell them that I’ve needed it for a long time, that my body is a mess, and that this gives me a better quality of life.  It also helps that Max isn’t nearly as able to concentrate on squirrels as he is when walking at my on-foot pace. Always a silver lining!

I’ve been able to do so many things with my scooter.  Unlike with my wheelchair, I don’t need someone to help me.  I’ve got this.  Airports are easier.  Shopping is easier.  Getting around is easier.  Life is easier… mostly.

What’s not easier?  Getting around inaccessible spaces.  Having Max has opened my world in so many ways, as he can help me to get into spaces that are inaccessible by bracing me on stairs, helping with doors, pushing carts, etc. But, having the scooter, has in some ways, put me back a few steps: though the scooter is magical, it cannot open doors or go up stairs.  Once Max and I learned to navigate my not-quite-accessible campus together, along comes the scooter to shed a brighter light on its shortcomings.  For example, when a power assist door button is out of order (happens at least once a day somewhere on campus), Max can help me open the door (which is extra heavy when the power assist is broken).  If there is no button, he can help me.  Yay!  But, when you are on a scooter and there is no (functioning) button, how do you get inside?  How?!

I’ve learned to ram my way into spaces that allow such things; I’ve learned to wait until someone comes along to let me in; I’ve become an even bigger pain in the ass.  I complain.  A lot.  To everyone.  I don’t care.  How does a university spend millions of dollars on renovations and a new building and plan so poorly?  The buttons for the newly renovated library are in the most insane place I’ve ever seen, and they didn’t work for about the first 3-4 weeks of classes.  The president’s office doesn’t have an accessible entrance.  People are constantly blocking doors and ramps.  And disabled spaces.

In the end, I guess what I’ve learned from my scooter is to use the fact that it puts my disability “out there” for a good cause: activism.  If it makes people see my disability, so much the better.  I ain’t going to shut up.

Watch out.  Dwarf on a scooter.  She’s coming for you… at about 2.3 mph.

yippee-ki-yay-motherfucker

Waddle for the Cure

Deformed.  It’s a word I’ve heard a lot in my life, mostly in the doctor’s office.  It’s a tough word to hear, even in the sterilized vocabulary of a clinician.  I think, for me, it’s difficult because the internal deformities that form my condition are equally responsible for the major external deformity by which most people make judgments about me: namely, my dwarfism.

X-rays showing joint deformities associated with pseudoachondroplasia.

Inside

Photo of a group of pseudoachondroplastic dwarfs.

Outside

If I were to give you a medical definition of pseudoachondroplasia, it would start with the fact it is growth disorder, – or a skeletal dysplasia – that starts with a mutation in the COMP gene.  The NIH has this to say about it:

Mutations in the COMP gene cause pseudoachondroplasia. This gene provides instructions for making a protein that is essential for the normal development of cartilage and for its conversion to bone. Cartilage is a tough, flexible tissue that makes up much of the skeleton during early development. Most cartilage is later converted to bone, except for the cartilage that continues to cover and protect the ends of bones and is present in the nose and external ears.

The COMP protein is normally found in the spaces between cartilage-forming cells called chondrocytes, where it interacts with other proteins. COMP gene mutations result in the production of an abnormal COMP protein that cannot be transported out of the cell. The abnormal protein builds up inside the chondrocyte and ultimately leads to early cell death. Early death of the chondrocytes prevents normal bone growth and causes the short stature and bone abnormalities seen in pseudoachondroplasia. (http://ghr.nlm.nih.gov/condition/pseudoachondroplasia)

So, if we were to make a word cloud of several medical literature sources discussing pseudoachondroplasia, we’d find the most common words used to describe this condition.  Oh wait, I DID just make a word cloud using several medical literature sources discussing pseudoachondroplasia.  Lookie here:

Screenshot 2015-06-27 12.39.09

Very interesting.  Whether or not I limited the number of words to 50 or 100 or 150, the theme remained: mutation, disorder, abnormal, growth, spine, bone, hands, joints, surgery, arms, body, COMP, gene, short, stature.

If we deconstruct the cloud a bit, we can see that there are two things going on: the internal and the external.  There is a lot going on on the inside of my body that you don’t know or see (mutated genes, deformed joints, abnormal bones); but, what the average Joe on the street DOES know is that I’m mutated, deformed, abnormal. I know because I hear different forms of these words almost daily: “weird,” “odd,” “funny-looking,” etc.

I guess what I’m getting at here is that when you hear the medical terminology describing your internal reflecting the outside space in which you move and live, it is almost impossible not to think of yourself this way.  I’m deformed, inside and out.

As a high school student, the part in biology when we would go over punnet squares and genetic mutations would always nudge that part of my brain that knew I was a “mutant.”  I used to throw around that word a ton in high school to be funny, but it was in reality more to deflect any judgments I thought others were already making.

Back to the internal-external discussion… This is something I’ve been pondering lately. What most people see on the outside (the short stature) does not come close to reflecting the internal realities of my body.  That first spark, that mutation, that caused the COMP gene to flip out did cause me to be short, but it also caused all of that other stuff in the word cloud that’s inside my body.  I’m not made right.  I’m not.  Plain and simple.

People sometimes say, “don’t talk like that”; “look on the bright side”; “it could be worse.” I’m not sure what they are trying to say…  I’m not being negative.  I’m not made right.  I’m deformed, abnormal.  I’m a mutant.  Sometimes, I need people to understand the extent of the mess that is the reality of this body.  It’s not about accepting “who I am.” True, I’m short.  Not much to do about it.  But, accepting my short stature is different than acknowledging the daily pain that my body experiences.

I’m going to jump a bit here.  I’m sure this entry feels a little disjointed and awkward, but I promised a dear friend I’d write it by tomorrow, or she’d make me eat a horrid, boring kind of salad, instead of a meal worthy of a foodie.

And, the truth is: I’ve been sitting on this post for a while.  A few weeks ago, someone on FB posted this news story: Standing Tall.  Watch it, or not, but here’s their little, fancy-schmancy description (it’s nice to know that the Australian 60 Minutes is just as cheesy as our own):

The beautiful little kids in this story are just like yours and mine, but for one faulty gene. They’re the one in 20,000, for who statistics on dwarfism become a reality. The impact, is life-long, but now a team of Australian researchers is on the verge of a revolutionary new treatment for the most common form of dwarfism: achondroplasia. It’s a drug that actually grows the bones of children with the condition, and for the first time these kids have a chance of a life of standing tall. In this heart-warming story Karl Stefanovic meets two very special families, and one incredible doctor, who knows what’s it like to grow up a little bit different. (http://www.9jumpin.com.au/show/60minutes/stories/2015/may/standing-tall/)

Now that you’re done reading/watching, you’ll see that there are researchers “on the verge of a revolutionary new treatment” for achondroplasia.  No, that’s not what I have, but it’s not even the news that struck me: it was people’s reactions.  First of all, this was posted in a FB Little People group page, and the poster commented that perhaps there was hope for XXX (a grandchild, I believe), after all.  Here come the comments: “you should lover her like she is”; “you shouldn’t want to change her”; “we’re all miracles.” Blah, blah, blah.  Frankly, I was disappointed.  These were people who should know better.  The outside is NOT the inside. This isn’t growth therapy or limb lengthening; it is a treatment that could positively impact medical issues for those who have achondroplasia; you know: the stuff on the inside.

For a little background, achondroplasia is the most common form of dwarfism (about 80%, I believe), so their voices can overshadow the rest of us.  Compound that with the fact that many of them don’t have severe medical issues, and you’ve got some loud voices talking about acceptance of physical appearance and ignoring some potential pain relief.

So, when I saw this FB conversation, I got a little angry and starting ruminating on this post.  But then some stuff happened.  One of them was about my body.

I’ve been struggling for almost a decade with ankle arthritis.  I’ve worn orthopedic boots for almost 8 years now, so it’s been bothering me a fair amount for at least that long.  It got bad about 3 years ago, and I consulted a specialist who said I needed my ankle fused because there wasn’t even much of a joint left.  At the time, I wasn’t ready for a procedure; I thought I could hold out for a miracle cure… stem cell research, ankle replacements, bionic feet.  And then, I got distracted by getting a service dog and having both shoulders replaced in shortly under a year.

Cut to May.  Reality check.  I’m not fooling anyone: my ankle is fucked.  My lovely husband tells my mom that when I stand “chatting” for a few minutes after I get up from a seated position, I’m really buying time, not admitting that I’m waiting for the pain to lessen enough to be able to stand on my right leg.  He outed me.  Somewhere around that time, I commented to him, “it’s not THAT bad.”  To which he retorted, “you yell in pain when one of the dogs brushes past your foot.  That’s been happening for a while. You can barely cook.  You can barely walk.”  Now he’s calling me out.  Fine.

I make an appointment to see an orthopedic surgeon to see what he says.  Here we come: full circle.  He says, “wow, you must be in a tremendous amount of pain.  This is as bad as it can get.  I can’t do this surgery; your joint is too deformed.  You’ve got to go see Dr. XXX.”

There it is: deformed.  I’m deformed, inside and out.  The outside, I can deal with.  I’ve got to.  The inside makes me cry and hope for a cure.  When people get all uppity and say you should “accept” yourself, they aren’t seeing the catastrophe that is the inside of my body.  I don’t hear people telling those with cancer, MS, or Alzheimer’s to “accept” themselves.  No, we have Relays for Life, Ice Bucket Challenges, and Alzheimer’s Walks.

Is it really so bad to want a treatment?  I feel like some people in the Little People community equate a treatment or cure with wanting to cure what is really a social issue.  They view it much like wanting to “cure” homosexuality. Dislike of otherness is a social problem, not a medical one.  True, you being uncomfortable with my height and funny-looking body is your problem, and I shuoldn’t have to fix it.  However, there are those of us with veritable medical issues; issues that cause pain, and yes, suffering.  In that case, “Alex, I’ll take Waddle for the Cure for $800.”

I didn’t weigh in on the FB conversation about the video, but I guess this post is an extended reply.  I can live with the height; but the pain, now that I could do without.  I’m facing another major surgery; my third in less than three years.  I’m sick of not having summers (when other faculty get research done); I’m sick of sucking up other people’s time taking care of me (family and friends alike); I’m sick of hurting.  If I had a child with pseudoachondroplasia and someone said, “hey, if your child gets this treatment, the pain associated with this condition will be drastically reduced,” I’d agree.  I’m not self-loathing; I’m realistic.  Pain sucks.

Une vie de chien – Partie II

Wow.  I bet you thought I’d disappeared.  I did, into the abyss of a semester back after a sabbatical.  But… I’m baaaaaaack!

As promised, this is part two of my discussion on service dogs, and this post is all about the training process.  As I mentioned in Une vie de chien – Partie I, Max and I trained together for a year before he graduated from “service dog in training” to “service dog.” That’s it. That’s all it took.  Boom.  Done.  Mic drop.

Kidding.  Kidding.  It was one of the most intense experiences in my life, and that includes grad school and the dissertation years.

Beyond picking out a rescue dog (of course) who had the necessary qualities (I worked with a behaviorist for this part, though this post gives you the idea), I had to pick a trainer.  This is difficult business.  There aren’t many trainers out there who do service dog training, and even then, you have to mesh with the trainer as much as you do the dog, and the dog with the trainer.  I was lucky enough to find a one Mr. Jim Turner, an amazing behaviorist AND trainer.  He’s got a blog right here on WordPress.

I can’t say enough about Jim.  Right from the beginning, he let me know what to expect from the process and let me know, more than once, how difficult the task that lay ahead.  This was a commitment.  To Max.  To myself.  To training.  To Jim.

This commitment meant beginning with three sessions per week, lasting usually about 2-3 hours, on top of my already full work schedule and long commute.  Three days per week, I traveled from Indy to Muncie to Richmond.  Often, I did not get home until 9pm or 10pm, and then I had to turn around and go right back to it the next day.  In between training sessions, I did training at home, at the office, in stores, in restaurants.  At home, we had regular formal sessions.  Out and about, every moment was an opportunity.  Beyond my chic purse, I got to add the additional bling of a clicker and a handy treat bag, filled with desiccated hotdogs (no nitrites, of course) and other such yumminess.

At the beginning, when Jim met with me and Jeevan, he had said (not verbatim, creative license here): “You know, this is going to be tough.  You’ll always be training.  You’re going to carry treats, and you’re going to train whenever you see a moment.  Things are going to take longer, and it can get frustrating.  It will be frustrating at times for Jeevan when he sees your relationship with Max grow and when it’s difficult for you to pay attention at a restaurant because your mind is always partially on Max.  You have to be ready.  Go home.  Think about this.  If it’s right for you, and I’m right for you and Max, call me, and we’ll start.”

It was daunting to be sure, but we were ready.  Jim evaluated Max, and though he was a wild child then, he had potential.  He asked what I thought a service dog could do for me.  At that time, I was struggling with a failing shoulder and needed help carrying things, and I could really use something under my legs when sitting in chairs.  Jim’s response?  “A dog as an ottoman?  Hmmmm.”  Turns out, Jim was right: I never did train Max as an ottoman.  Though, from time to time, he likes to get under my feet and rest his head on my shoe, but that’s not one of his service tasks; it’s just because he loves his mama.

We began with the basics that all dogs should have.  Max was a blank slate and could only “sit,” so we had to begin with: down, stay, wait, leave it, loose leash walking, etc.  Those are fairly easy, but service dogs have to have these skills down pat before they can even move on to service skills.

We did clicker training, which is a form of positive reinforcement training.  You first teach the dog that a click means a reward (treat, love, kisses, “good boy”).  Then, you mark a desired behavior with a click and reward.  Eventually, you mark the behavior with a command.  The real trick is to click at the right time and with the correct behavior.

For example, when we were training Max to “stop” on command (mid-walk, mid-trot, whenever).  As SOON as Max stopped for any reason, “CLICK!”  TREAT!  At the beginning, the stopping is pretty much when you stop, but you CLICK!  and TREAT! The wheels start turning in the dog’s head:

MAX:  “Oh, I get a treat, if I stop. I’m going to stop.”

AMY: “CLICK!” TREAT!

MAX: TREAT!!!!!!!!!! I’m a good boy!  Good Max!  I love stopping!  Stop.  Stop. Stop.

Then, you start adding the command: “STOP!” “CLICK!” (if he stops). TREAT! “GOOD STOP!”  Rinse, lather, repeat.

This is marking desired behavior.  We used this to train Max such commands as: stop, wait, fast, slow, leave it, etc.

Brevity-cartoon

The extra interesting part of training was the complex behaviors, and this requires shaping behavior using successive approximation (that’s what it’s called, right Jim?).  Jim is extra awesome at figuring out this part.  You begin by naming the desired task and then figure out the steps to get there.

EXAMPLE: Pushing a button to open a power assist door

  • Desired behavior: pushing button
  • Required skills: 1) recognize object to push; 2) push; 3) apply pressure.

For this, Jim knew that Max needed to first offer a paw.  For this, we waited until Max placed a paw near us.

JIM: “CLICK!” TREAT!

MAX: “Wha? What did I just do?  Hmmm.  I’m going to randomly do tricks and see what happens.  Sit. Down.  Kisses.  No?  Hmmm.  This guy is dumb. I’m going to poke him.”

JIM: “CLICK!” TREAT!

MAX: “What?  Weirdo.  Not sure what I did again.  Sit.  Down. Kiss.  Sit.

JIM: ….

MAX: “NOTHING?  Man!  Poke.”

JIM: “CLICK!” TREAT!

MAX: “Dude! It’s the paw!  Paw!!!!! Poke.”

JIM: “CLICK!” TREAT!

MAX: “Awesome! Poke.”

JIM: “CLICK!” TREAT!

MAX: “That’s it!  Poke. Poke. Poke.”

JIM: “CLICK!” TREAT!  Good touch!

You get the idea.  Once you mark the behavior with a command (“touch” in this case), you begin clicking and treating ONLY when the behavior is offered AFTER a command.  The idea has to be yours, not the dog’s.  To make sure this is the case, you can test it with multiple commands.  For example, if you say “sit,” the dog should sit, not offer a paw. Try a couple of different commands, then say the new one.  Once you consistently get the correct behavior, your dog has got the idea.  Even so, go home and PRACTICE!!  I had to keep a log of our home practice sessions:  I had to log: 1) each skill we practiced; 2) How long we spent on each one 2) How many times the correct behavior was offered; 4) any distractions; 5) notes.

Wait.  How is this related to pushing a button?  A hand is not a button, and “touch” is not “push.” This is the cool part.

Once Max had the idea of touch down, we added a target.  We’d say “TOUCH” and, with a yellow square in our hand, we’d click any time he’d offer a paw near the marker.  The idea is that you reward the behavior, being lenient at first, and getting stricter as you move on.  Eventually the dog only gets a CLICK! when it puts the paw on the marker.  Then, you move the marker.  On the floor.  On the wall.  On your thigh.  The dog eventually associates touch with a target.

Wait.  That’s still not pushing!  Ok, ok.  I’m getting there!

In the end, we want Max to apply the correct amount of pressure on the target. This is “PUSH!” Jim had me buy an “easy” button for practice.  You know, one of these:

easy

We put the target on the button and began clicking and treating when the button was pushed hard enough to get the trademark, “that was easy!” Then, we marked that behavior with the command “PUSH!” We eventually moved on to doors, door openers, grocery carts.  Now, Max can PUSH! this:

Max learning to push a grocery cart.

And this:

button

And even this:

images

It’s true, some doors are too heavy for him, and it’s too heavy for me, but he gives me that extra power.  We do it together!

For a more visual idea of how this happens, look at this cool little example:

You can see that it is quite the process.  Now imagine this for every complicated skill Max and I had to learn together.  Now you know why I spent the better part of a year exhausted!

Here is a list of the skills Max has (totally forgetting some).  Don’t confuse the skill with the command.  For the most important commands, I chose words that aren’t always obvious to others because I can’t have other people trying to tell my dog what to do.  Sometimes people feel that they can tell me he doesn’t mind very well because he doesn’t listen to them.  The mark of a good dog on duty is that he doesn’t mind anyone but the handler!

  1. Sit
  2. Down
  3. Stay
  4. Wait
  5. Stop
  6. Leave it
  7. Heel
  8. Watch me
  9. Greeting behavior
  10. Refocus behavior
  11. Go to X (bed, rug, towel, mat, etc).
  12. Get it (keys, pencil, paper, credit card, bottle)
  13. Give it to X (a person, me or anyone else)
  14. Drop it (on floor, in garbage, etc.)
  15. Hold (keep whatever he has in mouth until I say so)
  16. Slow
  17. Fast
  18. Push (cart, button, door, etc.)
  19. Pull (door, wheelchair, cart, coat sleeve, socks)
  20. Touch
  21. Left
  22. Right
  23. Forward
  24. Backward
  25. Crawl (good for getting into small spaces)
  26. Under (table, chair, etc.)
  27. Up (onto something)
  28. Off (off of something)
  29. Brace (stiffen his front legs to act as a sort of cane)
  30. Help mama (i.e. go into service mode when he’s not actively on duty – mostly at home)
  31. Bark on command
  32. Spin right (helps to get into tight spaces)
  33. Spin left (helps to get into tight spaces)
  34. Sideways right
  35. Sideways left
  36. Follow (usually when I am in my wheelchair and am being backed up; he follows in front).
  37. Pee on command
  38. Poop on command
  39. Go find
  40. Step up (bracing for going up step)
  41. Step down (bracing for going down step)
  42. Dance with mommy (just for fun)
  43. Command to get harness on
  44. Command for service position
  45. Command to finish service
  46. Command for bedtime
  47. Let’s go
  48. Thank you!
  49. Up up: Get in car and wait for harness to be attached to security belt before getting all the way in
  50. Stand

Not an exhaustive list, but you get the idea.  Here’s another list for your perusal.

But… there’s more to training than that.  There’s public access training.  This means that, once your dog has a good skill set, it needs to be able to perform these skills EVERYWHERE and with distractions, like: kids, walkers, wheelchairs, food on the ground, other dogs, squirrels!, people he loves, loud noises, people talking to you… etc.

This is the most important, and perhaps most frustrating part of training, and I will get to that in Partie III!  Also, there will be more about the wonderful Jim because he helped me not lose my mind during this crazy part of the training.  I promise not to wait so long until the next post.

Small, yes, but… Undateable?

This is from a fellow LP blogger. Dating as an LP is tough, indeed. She has said it as well as I could!

Life with Pseudoachondroplasia

Undateable. Not exactly something you’d want to be described as, is it? Yet as Channel 4 begin another series of the programme ‘The Undateables’ it does make me wonder whether if I were to apply to be on the show, if they’d be happy to give me that label too. To date, they have had three individuals with another form of dwarfism (achondroplasia) on the show, which leads me to believe that they would in fact, consider my growth condition, or disability, as a reason to make me ‘undateable’ – as a reason why I may struggle to find love in life, to have a relationship.

I don’t want to spend this post ranting about my opinion of this show (though, for the record, I think it’s terrible), but it has made me think – I don’t view myself as undateable (or at least, not because of my condition!), but…

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Good Cripple, Bad Cripple: What the hell does that mean?

So, Disability Studies is an emerging interdisciplinary field/theory that literature, sociology, history, cultural studies, and the like are beginning to use as another tool to talk about “otherness.”  It happens to fit in nicely with other messy topics centering around the “other,” – the fancy word for otherness is “alterity” (my favorite philosopher on this topic is Levinas) – topics like race, sex, gender, and basically any minority.

Bear with me while I get a little theoretical for one moment; you can skip to the next 2 paragraphs if you want. No hard feelings.  Anyway, the “other” is basically anyone who is not your “self,” but of course, there are myriad philosophies out there about how this leads to ethics and such, based on how one should treat the “other.”  Think Sartre, Camus, Heidegger, Buber, Levinas, et al.  I’m not going to get into that here, but I do want to get in to how this plays out in society.  Basically, pick a topic.  Let’s say race.  As a white person, races different from mine are “other;” we do not have a shared experience in that regard. It also happens that I live in a society in which the majority race is white.  Our government was designed by white men, for white men.  Our institutions are white institutions.  What we can chalk all of this up to is that our society is one in which the white experience is the norm; this is the normative experience.

You can extend the normative to any dominant experience. Being straight is normative.  Being cisgender is normative. Being able-bodied is normative.  Do you see where this is going?  Some normative experiences are culturally/geographically dependent (i.e. being white isn’t the norm everywhere), while others are not (i.e. being disabled is pretty much never the norm).  So, what does this have to do with Disability Studies?  Well, by studying, and theorizing, about the way the disabled experience is different (i.e. “other”), we may be able to create a more inclusive society, one that includes experiences beyond those of the majority.  Now you see why people who do Disability Studies also look to other theories and fields to talk about disability.  Feminism, cultural studies, LGBTQ studies, postcolonial theory, among others, connect to each other in that they all address the relationships between the normative and the non-normative.  This blog is about my experience with a non-normative body and how it shapes my world view.

ZZZZZzzzzz.

Wake up!  My academic mumbo jumbo is complete, so let’s move on to the good stuff: good cripple, bad cripple.  This is a concept rolling around out there among those who do Disability Studies that normative society (able-bodied folk) have imposed two categories for us disabled folk to fit into.  The good cripple is the one who doesn’t complain too much, the one who is upbeat and optimistic, the one who overlooks most of the ADA non-compliance issues, the one whose story inspires able-bodied folk because they have “overcome” their lot in life.  They triumph!  The bad cripple (there’s a blog about that) is the bitter one, the one who is depressed and mean, the one who is critical of every public space, the one who needs to “get over it.”  BluntShovel does a nice job of talking about being a bad cripple, and the pressure one feels to be good when you want to be bad! I love, love, LOVE this post about why the “good cripple, bad cripple” binary opposition needs to change, and an interesting article, “Call Me a “Good Cripple” If You Must,” on the topic as well.  Independencechick has got it right, if you ask me.

I have good cripple days and bad cripple days.  I want friends, family, and colleagues who understand both.  Of course I enjoy it when people tell me how well-adjusted I am, but it makes talking about the bad days tough.  Sometimes my body hurts so bad that I just want to cry, but the “good cripple” in me only lets a select few see that side of me.  But, I’m getting better at showing the other side of me.  I think it’s important.  How is society going to change if I’m the one who has to overcome society?  I think most advocates have to be grumpy from time to time.  As with most things, balance is essential.  I’ve learned that being the good cripple too much has had the unwanted side-effect of people not really thinking I’m disabled or not understanding the extent of my underlying issues.  My skeleton is a hot mess: that’s why pseudoachondroplasia is a skeletal dysplasia, see?

So, what part do you play in all of this?

Ask if I need help.  Who doesn’t need help at certain moments.  I think many people are afraid that disabled folks want to do everything on their own. To be sure, there are people like that out there, and they aren’t all disabled.  But, if it looks like I might be struggling, I probably am.  I love it when people hold doors or offer to reach high-up items at the grocery store.  It makes people feel good to help, and I like not having to always ask.

Speak up.  When you see someone illegally parked in a parking space, leave a note, – it doesn’t have to be nasty – or inform whoever might be in charge.  Go out of your way when you have the time.  Having a non-normative body means that we have to go out of our way to function in a world built for people with normative bodies.  Advocate!  I would love to see as many Facebook profile photos advocating accessibility as I do marriage equality, cancer awareness, or whatever.

Educative yourself;  become thoughtful.  If you have a friend, relative, or colleague with a specific disability (that they have disclosed, or is obvious), do your homework.  I don’t expect for you to become an expert, but my mind would be blown if someone actually anticipated some of the problems I might have.  My dissertation advisor read Ursula Hegi’s Stones from the River, and he told me that it had never occurred to him that it was painful for my legs to hang off a chair.  I explained that, in high school, I had a stool in every classroom, but that I gave that up in college.  The next day, there was a stool in the room where we had our graduate seminar.  He told me I didn’t have to use it if I didn’t want to, but it was there.  What a great feeling! I have never felt so welcomed as I have when friends and family have thoughtfully placed stools in strategic places before a visit.  Recently, I was visiting a friend who had purchased a stool just for me.  So wonderful.  Or when I find a coffee cup and dishes waiting for me down low when I wake up in the morning. Such nice gestures.

Listen.  I know it might be uncomfortable to hear about my pain or frustrations, but just listen.  Don’t explain things away, or say things like “well, at least you can walk.” Don’t even get me started on that one.  That time you broke your leg is not the thing to talk about when I’ve just found out my ankle is beyond help.  Just listen.  I’ll listen to your story another time.  I promise. One more than one occasion, I have heard that people of color often encounter a similar situation when they bring up race or racism.  People get nervous and can’t relate, so they might talk about the time someone told them they were a bad dancer, and they were sure it was because they were white.  Reverse racism.  Not the same.

 

There were the times the surgeons broke my leg.

Now is the time when I insert a nifty quote from a novel I finished last month, Americanah by Chimamanda Ngoziwhich Adichie.  I think that race and disability are similar in many, though not all, ways because difference makes people uncomfortable, so talking about it is uncomfortable.  The burden to have that tough conversation often shifts to the different person, so it’s nice to have someone to back you up.

Understanding America for the Non-American Black:

Thoughts on the Special White Friend One great gift for the Zipped-Up Negro is The White Friend Who Gets It. Sadly, this is not as common as one would wish, but some are lucky to have that white friend who you don’t need to explain shit to. By all means, put this friend to work. Such friends not only get it, but also have great bullshit-detectors and so they totally understand that they can say stuff that you can’t. So there is, in much of America, a stealthy little notion lying in the hearts of many: that white people earned their place at jobs and school while black people got in because they were black. But in fact, since the beginning of America, white people have been getting jobs because they are white. Many whites with the same qualifications but Negro skin would not have the jobs they have. But don’t ever say this publicly. Let your white friend say it. If you make the mistake of saying this, you will be accused of a curiosity called “playing the race card.” Nobody quite knows what this means.

When my father was in school in my NAB country, many American Blacks could not vote or go to good schools. The reason? Their skin color. Skin color alone was the problem. Today, many Americans say that skin color cannot be part of the solution. Otherwise it is referred to as a curiosity called “reverse racism.” Have your white friend point out how the American Black deal is kind of like you’ve been unjustly imprisoned for many years, then all of a sudden you’re set free, but you get no bus fare. And, by the way, you and the guy who imprisoned you are now automatically equal. If the “slavery was so long ago” thing comes up, have your white friend say that lots of white folks are still inheriting money that their families made a hundred years ago. So if that legacy lives, why not the legacy of slavery? And have your white friend say how funny it is, that American pollsters ask white and black people if racism is over. White people in general say it is over and black people in general say it is not . Funny indeed. More suggestions for what you should have your white friend say? Please post away. And here’s to all the white friends who get it.  Adichie, Chimamanda Ngozi (2013-05-14). Americanah (pp. 361-362). Knopf Doubleday Publishing Group. Kindle Edition.

This brings me back to otherness and normative behavior.  These things I have mentioned are all ways of recognizing, and legitimizing, my “other” experience.  This is a step towards creating an inclusive society: to understand that we are all “other” in some way and to make steps to ensure that whenever we are not the norm, we can participate.  Be the The White Able-Bodied Friend Who Gets It.  I have a few of them. I hope they know who they are.

Welcome to Lilliput

This is a blog about perspective, about how I see the world. It is about returning the gaze that is so often turned towards me. To be a dwarf is to live in the limelight, the spotlight; to be a spectacle.

What do I hope to offer the dear reader? A change in perspective. In the tradition of Gulliver, whose experience amongst the diminutive Lilliputians leaves him bemused and beffudled, and somewhat self-righteous in light of their pettiness, I will reverse the gaze. In the vein of Gulliver’s post-Lilliputian voyage to Brobdingnag, where he becomes the ridiculed, the spectacle, the object of the examining gaze, – a dwarf among giants – I am offering my Lilliputian view.

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“Szene aus Gulliver’s Reisen – Gulliver in Brobdingnag” by Richard Redgrave – Victoria and Albert Museum, London.

You see, I believe that my world view is inextricably linked to the experiences I have had and continue to have in Lilliput. Though my topics may not always be about disability, or dwarfism, or even spectacle, my gaze on the world is informed by these. These make up the multifaceted prism through which I reflect the world back at you. As I interact with the world, – read, listen, watch – my own experiences as “other” necessarily influence my perspective. Though, unlike Gulliver, I have lived my whole existence in Brobdingnag. I have never been a giant among dwarfs, but like Jonathan Swift, I do hope my writing will offer a new (relative) perspective, a new gaze, a new view on your world. This is how the world of Brobdingnag looks from Lilliput.

I remember when I was at Lilliput, the complexion of those diminutive people appeared to me the fairest in the world; and talking upon this subject with a person of learning there, who was an intimate friend of mine, he said that my face appeared much fairer and smoother when he looked on me from the ground, than it did upon a nearer view, when I took him up in my hand, and brought him close, which he confessed was at first a very shocking sight. He said, “he could discover great holes in my skin; that the stumps of my beard were ten times stronger than the bristles of a boar, and my complexion made up of several colours altogether disagreeable:” although I must beg leave to say for myself, that I am as fair as most of my sex and country. (Gulliver’s Travels, 2.1.11)

One more point on the title: the fancy Latin. In this I owe a debt to my liberal education.

Once upon a time, in college, I took two years of Latin and learned about such things as declensions. I learned that the feminine singular genitive of minuta is minutae, meaning “of a small thing.” In a similar vein, minutiae is the genitive of minutia, or “of smallness.” This is the game I’ve played with the name Lilliput. Lilliputia = things relating to Lilliput (i.e. small things). Lilliputiae = of things about Lilliputia. See what I did there? Clever.

The other part of my liberal undergrad (and grad) education involved the reading of many philosophical essays by none other than Michel de Montaigne. This lovely man would write essays and title them things like “des Cannibales” (“Of Cannibals“), or in other words: all about cannibals. See, Montaigne used this clever French genitive to talk about things pertaining to “cannibals” (or whatever). Except for that most of Montaigne’s essays are not actually about what the titles say they’re about. There aren’t really that many cannibals in this essay, except for that he’s talking about relative morality. Who is the true savage? The cannibal or the European? Who is the dwarf? The Lilliputians or Gulliver? See what I did there? Clever.

One last thing. The title of this blog is also meant to be subversive in the sense that I hope to reappropriate some negative associations that the community of people with short stature might have with “short worlds.” Back in the heyday of Cony Island’s Dreamland, there was a place called Lilliputia, or “Midget City,” a miniature city where 300 dwarfs lived as a spectacle.

Gumpertz began his career at Coney Island’s Dreamland in 1904, the year it opened, with a smash hit: a miniature village populated by very small people. Lilliputia, also known as Midget City, was built to resemble 15th-century Nuremberg, except that everything was smaller. The inhabitants, gathered by Gumpertz from expositions around the country, had their own parliament, their own fire department (which regularly responded to false alarms), and their own theater. For increased effect, Gumpertz installed a few giants to wander this experimental community from time to time. (PBS)

Lilliputiae is also then a response to this Lilliputia. This is what I think of the “tall world.” I am not rendering it a spectacle, but it is under my microscope nonetheless.

 

Dreamland’s Lilliputia had its own Midget Fire Department.