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

Une vie de chien, partie III: Uber-friggin-tastic

For the record, that subtitle would be in the “sarcastic” typographical emphasis, if ever there were one.  You know, the one right next the bold, underlineitalics, and strikethrough.  If someone could get on that, I’d appreciate it.

The sarcasm is not directed at my lovely Max; no, it is directed at the ride-share service and the horrible experiences I had with them in the fair city of Providence, RI, back in July.

Let me get the liberal stuff out of the way first: yes, I know about the implications of using Uber when it comes to its treatment of its drivers (this is a great undercover report) and taxi union complaints.  BUT, – and here comes the disability stuff – these are the kinds of decisions people with disabilities have to make when access isn’t a dream.  The Providence bus system isn’t bad, and the busses are fine in terms of me being able to get on and off, but for me, walking more than two blocks to get somewhere can take a while and takes a toll on my horrid ankle, especially in the rain.  I was going to be going back and forth a couple times a day over 3 or 4 days, so Uber was more economical than a taxi.  I thought Uber was a necessary evil

I’ve taken Uber a few times but try not to make a habit of it, for the reasons stated above.  I’ve never had a problem in Indianapolis, and the time or two I’ve taken it in Boston was fine as well.  Alas, Providence was a different story.  Maybe it’s the drivers, maybe it’s the city, maybe it’s the fact that I was riding alone for the first time, but it was less than desirable either way you slice it.

My first ride was in the evening, and it had rained.  I make my request, and it says my ride will be there in 5 minutes. Yay!  Usually, my worry is that the car will be a big one and I won’t be able to get in, but it says it is a Prius.  Ok, I can do that.  Next, I get a notification that my driver is “deaf or hard of hearing and uses ASL to communicate.”  I think, “That’s interesting.  I’m glad to know that Uber uses drivers with disabilities.”  (I’m not going to get into the whole deafness-as-disability discussion here, so don’t get your panties in a wad, as my mom would say).  The guy arrives and looks at Max and is visibly unhappy, so I point at Max’s “Service Dog: Access Required by ADA Law” patch.  The dude doesn’t get out of the car to help, so I try to get Max on the floor between the front and back seats, but it’s a no-go.  Not enough room; it’s a Prius, after all, and not the larger Prius V either.  The guy’s getting upset that Max is getting the seat wet, but I try to get him to understand that the seat needs to be moved forward, but he waves my attempts at communication aside and grumpily drives us to my destination.  I was put off by the experience but thought that it was an exception and chalked it up to the fact that sometimes it can be difficult when the disparate needs of two disabilities collide.

So, I looked up service dog stuff on the Uber web site so I could be better armed in the morning. This is what I found:

Please note: all drivers are required by law to transport registered service animals. If you experience issues using Uber with your service animal, please reach out to us by reporting an issue with your trip. help.uber.com

I decided that things might go more smoothly if I let the driver know ahead of time.  Yeah, that’s it.

“Ride” #2.  I request my ride.  He’ll be there in 10 minutes.  It’s an SUV.  Ok.  I’ve got my foldable stool.  I have time to let Max sniff around for a bit.  It’s all good.  I press the “contact driver” option and type a message: “FYI – I am traveling with a service dog.  He can go in the back.”  Notification: “Oops. Your driver had to unexpectedly cancel your ride.”  What?  Coincidence?  I think not.  Good news is that the new driver is just up the street.  I don’t chance it.  I do NOT contact the driver.  He’ll just have to take me.

Ride #3. The new driver gets there, and he’s a nice, older man.  He compliments Max’s manners and helps me get him into the car in a good position.  I apologize for his wet paws, and he says, “no problem.  People get the floor wet, too.” Ok.  Maybe it’ll be fine from here on out.

Ride #4. I’m no fool; I’m not contacting the drivers any more.  They have to take me: it’s the law, dammit.  The guy pulls up and is not happy: “We’re not supposed to take dogs.” I said, “It’s a service animal; you have to.”  He’s foreign, so I explain a bit, and he acquiesces.

Ride #5.  Similar to #4, except this time, I don’t explain. I just say, “he’s a service dog; it’s against the law to refuse.” And I just get in.

“Ride” #6.  The end of my seminar.  I’m sick of this Uber crap. I’m not in the mood to argue.  I’m tired; it’s hot.  Maybe I’ll try to walk to the bus stop.  I get about a block and a half: “nope,” says my ankle, “not going any further.” So, I stop at a little cafe, grab a drink and get on the Uber app.  It’s rush hour.  He’ll be there in about 15 minutes.  So, I sit on the steps outside with Max and follow the car on the map.  Oh, here it comes.  I see the car make and model coming down the street… and pass us.  Hmmm.  Maybe he didn’t see us. That planter is sort of hiding us.  I see on the map that he is turning around the block to come back.  Ok.  Good.  It was a mistake. I “contact driver” and type: “we’re just outside, on the steps.”  The car comes back around… and passes us.   Notification: “Oops. Your driver had to unexpectedly cancel your ride.”  WTF!?!?!

Ride #7.  The new driver arrives.  He’s super nice, and when I try to get Max on the floor, he says, “he can sit on the seat.  It’s ok.” He hears me using some French with Max, and he comments that he’s Haitian, and we have a nice, enjoyable ride.

I call my friend C, with whom I was staying, to tell her I’m on the way.  And, I tell her I’m irritated.  A true friend, she’s got some bubbly in the fridge!

I go into my room and put my stuff down, and I just need a little cry.  Like I said, I was tired, hot, and achy.  I can get weepy when I’m mad about things involving my disability.  It’s already difficult enough to make it through the day most of the time, but when you’re already grumpy and one more person stares, a kid laughs, or someone won’t give you a damned ride, you get a little angsty.  I’m getting my cry on when C unwittingly comes in, and I turn around all pathetic and whimpery, and then she’s nice to me, and I go into the ugly cry.  She gives me a hug, and says, “you know, it’s about the dog, it’s not you.  Not because you’re a dwarf.”  Think about it and say, “I guess. Yeah.  Ok. Let’s have that bubbly.”

We had a lovely dinner with wine and cocktails.  But it ain’t over, Uber.  I’m gonna write a blog post about you, jerks.

I did some research, and this isn’t the first time people with disabilities have had trouble with Uber.   They are currently being sued for refusing rides to the blind… oh, and one driver put a guide dog in the trunk.  The National Federation of the Blind filed a civil suit against Uber for such treatment, and this is how Uber responded:

Uber had requested the case to be dismissed, on the basis that its contracts require customers to take disputes to arbitration and argue their complaints as individuals, not in class-action suits, according to SF Gate. The ride-hailing company also argued that it is not a “public accommodation” and therefore not subject to ADA requirements.  http://www.citylab.com/politics/2015/04/a-guide-dog-discrimination-lawsuit-against-uber-will-move-forward/391293/

Not cool, Uber.  Not cool.  What about that thing I found on your help page about requiring drivers to transport service dogs?  Hmmm?

In response to such problems, in 2013, the California Public Utilities Commission established that ride-share companies (e.g. UberX, Lyft, and SideCar) are under their authority and thus are subject to accessibility compliance.

And, it’s not just about dogs.  It’s also about people with wheelchairs, and there are groups suing both Lyft and Uber over that as well.

Beyond what I found on the Interwebz, I reached out to a disability studies listserve in which I participate, asking for some stories.  One respondent, who uses a guide dog, relayed multiple instances where he was denied a ride and even indicated that he tried Lyft – to no avail –  simply because Uber had been so horrible.

All of these instances have left me standing on a curb somewhere trying to find a ride home or just to run weekly errands. I have reported all instances that I have experienced to both Uber and Lyft. Now every time I request an Uber, I am always a bit fearful that I will get left on the sidewalk again.  ~H

Another person commented that he had used Uber to travel with his guide dog to a skilled nursing facility to spend time with his loved one and had not had problems.  He did note that this was his first time using Uber and that the ride had been organized by the facility.  I’m not sure how businesses set up rides, but maybe they can actually talk to a person?  Or, maybe as the respondent said, “Maybe [X (city in the West)] is more dog-friendly than other cities, but all the drivers were informed that I was blind and travel with a guide dog and uniformly the drivers have been terrific, accepting my dog and giving us a friendly ride.”

Perhaps there needs to be a button that says, “I am traveling with a service animal” or “I have ADA requirements.”  Couldn’t the driver then receive a notification, much like the one I received about my deaf driver, that the client requires accommodation?  A notification that reminds the driver that it is illegal – and may be enforced with dismissal – to refuse service?  It would seem awfully suspicious if your driver canceled that ride!

Before I finish this post, I want to go back to my conversation with C about the the ride refusals being about Max and not about my dwarfism.  At the time, I sort of half-heartedly agreed (because I was thinking about the bubbly) and said something about if not feeling like it, or some other blah blah.  Well, I’ve been mulling it over, thinking about why it bothered me so much, if it really was just about a dog.  And, I think she’s right: in the driver’s mind, it is about the dog.  They aren’t refusing a ride to a dwarf; they just don’t want a dog to mess up their car.  But, then I thought about the times people in wheelchairs have been refused.  Are the drivers refusing the wheelchair and not thinking about the person?  That sounds ridiculous.  But, the more I think about it, the more I think it’s probably the case.

This gets us to larger issues about living with a disability.  Yes, a wheelchair might be inconvenient to you, the able-bodied.  Yes, you might have to get out of the car to help fold up a walker and put it in the trunk.  Yes, my service dog’s hair might get on the seat.  To what extent are people with disabilities separable from the mobility aids we use?  If my aid is an inconvenience, then that sends the message that I am an inconvenience.  And that’s what hurts.  To the average person, the thing and the person aren’t the same; however, to a person with a disability, the thing (the wheelchair, the walker, the cane, the prosthesis, and yes, the dog) make our lives infinitely better.  They are, to some extent, an extension of our selves.  If you reject the thing that makes my life livable, you are rejecting me.  It is personal; it’s about my person.  It is another message that the normative body is the correct body, that the world does not have to move and change for the Other body, that public space is not for us.  To the disabled body, this is another way of signaling the desire to put us back in our place: hidden away.

This is the thinking against which the disability justice movement fights: the notion that deviation from the norm should be met with fear/disgust/anger/etc. by the “normal” and with shame/loneliness/self-loathing/etc. by the “crippled.”  You see, to be a disability activist is to refuse to be hidden and to risk being treated with those same fears, disgust, and anger.  (I could go on and on about how this is even further exacerbated by the historical burden of dwarfism and the “freakish,” but I’ll save that for another post).

To engage the public with “crip pride” is to risk being told by the world that you are an inconvenience, that if you want to be out and about, you shouldn’t threaten normative ideas about the body, beauty, space, and independence.  What normative society really seems to want out of the disabled is the “super crip.”  You know what I’m talking about.  That “extraordinary” cripple who is “just like you” “in spite of” X, Y, Z.  Doesn’t that make you feel better to know that I can be just like you?  That you can forget about my disability, even if I can’t?  The onus is on us to make you feel better about yourself, and about us.  It’s friggin’ exhausting.

One more thing before I go… This has got me thinking about the Black Lives Matter movement and what it says about White Privilege and how blind even the very intelligent and ultra-progressive can be to it.  This tendency of the majority is to put the burden onto the minority to explain themselves and to make that majority feel better about themselves, i.e. their privilege is real.  Why is everyone so upset about the #BLM interruption of the Bernie Sanders rally in Seattle?  Because we want to feel good about being liberal, free-thinkers, and being confronted by a group of people who demand recognition – a seat at the table – reminds us of our privilege.  It doesn’t make us feel good about ourselves; on the contrary, we feel guilty, and we don’t like it.

So, next time you are confronted with whatever social justice issue that makes you uncomfortable, think about it.  What really makes you afraid?  That your privilege might be taken away, or that you have so much of it?

Members of minorities who wish to preserve their self-definition need to define themselves in opposition to the majority. The more accepting the majority is of them, the more rigorously they need to do so, because their separate identity collapses if they countenance its integration into the majority world. Multiculturalism rejects the 1950s vision of a world in which everyone is subsumed by uniform Americanness, and chooses one in which we all inhabit our own treasured particularities. In his classic work Stigma, Erving Goffman argues that identity is formed when people assert pride in the thing that made them marginal, enabling them to achieve personal authenticity and political credibility. The social historian Susan Burch calls this “the irony of acculturation”: society’s attempts to assimilate a group often cause that group to become more pronounced in its singularity.

Solomon, Andrew (2012-11-13). Far From the Tree: Parents, Children and the Search for Identity (Kindle Locations 610-616). Scribner. Kindle Edition.

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.

Cripping Academia

I’m putting off Partie Deux of my post about life with a service dog because something else has come up that has spurred me to write: disability and academia.  This has, in fact, been on my list of blog topics for a while, but an interesting email exchange between some colleagues prompted the timing.

One of my colleagues (Colleague 1) forwarded via email to the department this article, which discusses gender bias in student evaluations.  It’s a very short article about a study with a very small sample size, but my colleague sent the email in an attempt to spur conversation, as we are in the midst of self-evals (yay…).  Another colleague (Colleague 2) responded that this article had a major fault (actually, the word “revolting” was used): it failed to raise the question of race.  As I read the reply, I thought, “interesting, – strong language – but not the point of the study.  That’s a different bias, and a different study.” So, Colleague 1 replies to Colleague 2 that, unfortunately, circumstances land us in the same boat.  Colleague 1 went on to point out that most job ads state that “women and minorities are encouraged to apply” in order to support the unfortunate similarities of the situations.

So far, I had been silently following the email with interest, but this got me going.  I’ve taken exception to the application process at many institutions, a process that often neglects the very idea that someone with a disability might apply, or would be encouraged to do so.  Some places tack on something to include LGB diversity (I’m purposefully leaving out the TQ because they are usually left out – yay Obama for mentioning the T in his SOTU: see the Time article on it) , but in my job search, I did not encounter anything about disability.  Yes, I know, the “minority” thing is a blanket term.  Fine.  I accept that.  However, when you go online to actually apply, they ask optional questions about race/ethnicity and gender.  I have never (to date) been asked about disability.  I know that was eight years ago, but I’ve chaired my fair share of search committees since then, and it’s still not on our app.  I realize that many people would not choose to disclose disability, as many people choose not to answer the race/ethnicity and gender questions, but if we are going to gather data, we should gather all the data.

Having served on a “diversity and inclusion” task force, I know that the answers to these types of optional questions are used to report data on recruiting and retention of minorities.  My own institution uses data from surveys for retention efforts of both students and faculty who are part of a minority.  Though, as far as I can tell, it stops with race and ethnicity.  We’ve finally got some LGBTQ-ish stuff happening, I’ll admit.  But, – and here’s the thing that got me to respond to this email exchange – no one has ever tried to recruit me (except, ironically, the Marines as a musician in high school, and they only saw my info on paper) or retain me.  And, according to this data, only 7% of doctoral students have a disability.*  Not all of them will go into academia, or succeed in academia.  Recruitment and retention are important!  Not once has my institution approached me to ask how they might make my life easier, make me want to stay.  I’m a smart cookie.  I’m a good great teacher.  I work hard on committees.  I’m collegiate.  I do research.  And I make them look more diverse, if they’d ever stop to think about disability as diversity.  But, they don’t.  I’m not only a disabled faculty member, but I woman, and also partly an administrator whose made a name for herself on campus.  I’ve even offered to help start a mentorship program for disabled students, explaining how difficult it can be to shift from having parent-advocates to being your own advocate at a time when you want to be making new friends, not waves.  I’ve been here eight years and nada.  

For the record, here was my reply to the email exchange:

And, I might add, nowhere does it address disability!  People, students and employers included, often assume that you are less able in all ways because you are disabled in some way(s).

As [Colleague 1] implies, I think it would be safe to say that all minorities are judged according to a standard that was not made by, or for them.  The inequities are of different sorts, but inequities just the same.  In my book, all minorities (women, people of color, LGBTQ, disabled, etc.) thus have a duty to work towards diversity and inclusion for all groups, not just their own.  I even have a blog entry about it!  https://lilliputiae.com/2014/12/11/from-the-outside-in/

A couple of things bothered me about this exchange. One, colleague 2’s defensiveness about a different issue, which made an assumption that we do not care about race/ethnicity.  This made me feel as though gender bias did thus not matter to this colleague, who expected us to care about race.  I appreciated that colleague 1 attempted to calm the waters by bringing up the job ad issue, and I know the intent was genial.  But, “dammit,” I thought, “if we’re going to talk about diversity, let’s talk about diversity.  Let’s stop this, ‘my situation is worse than yours’ game.  It gets you nowhere.” As you can tell, my blog includes issues like #BlackLivesMatter and LGBTQ equality.  We are ALL in the margins of society.  This is why I replied how I did.  For the record, as of today, no one has replied to my email.  Hmmm.

This brings me to the topic about which I’ve been thinking for a while: “crip time.” This lovely piece by Anne McDonald explains what “crip time” means to her and her disability (CP): Crip Time.  For me, crip time means needing extra time to get to meetings, to get up from a chair, to get into my car, to “run” to the student union for coffee.  For me, walking is slow because my legs are short, and because I’m in pain.  As I said in my last blog, having a service dog also means that I take more time to get places because I have to get him ready, too.  Colleagues most often don’t think about where they schedule a meeting, or how hard it will be for me to get there.  They don’t think about accessibility or if I have a class to get to afterwards, or how hard it is for me to sit in a chair from which my feet dangle for several hours, pulling on my back and arthritic joints.  My life just runs at a different pace.

Unlike someone with motor impairment, I don’t struggle to write or talk.  I make myself understood very well.  However, my disability takes up a large amount of time in my day, and in my psychical space.  It takes time and energy to be disabled, to deal with chronic pain.  The idea of teaching on a bad day stresses me out.  How can I make it through a two-and-a-half-hour class when my back hurts so bad I want to cry?  How do I summon the energy to be passionate about a topic, which usually does make me passionate, when I just really want to load myself with NSAIDs and head to bed?  Does this impact my student evals?  I have no idea.

Beyond the daily impact, there is potential to impact your career in academia when you have (and disclose) a disability.  All of these moments when I wonder if I can go on are also moments when I push myself to continue so I can keep up with my colleagues.  So I can get tenure.  (Got it now). Recently, Insidehighered.com published an article outlining some research that has been done on faculty work hours: So Much to Do, So Little Time.  The article states that, “On average, faculty participants reported working 61 hours per week.” There are also some snazzy charts that break down our pathetic attempts to get work done:

Besides making me want to cry with anxiety about my todo list, this made me think about other types of “crip time.”  There are all these random things that get done during the day, and at home, and the coffee shop, and on vacation.  Oh, and my 75-mile commute each way, which is made more difficult by my disability.  When you add things like pain, slowness (in both mind and body), and physical therapy to this list, it’s downright overwhelming.

The article goes on to say “[…] that the study did not take into account summer work habits — when faculty members may have more time to do research.”  This made me laugh to myself a bit, and then die a little inside. In the interest of full disclosure, I got tenure two years ago, but not without much crying and stress about how I spent my summers.  The first summer as a faculty member, I had a knee replacement.  Not such a big deal, unless you have an underlying disability that makes it even more complicated, and painful.  People said, “you’ll have lots of time to read!” Except for the fact that I was so uncomfortable for six weeks that I couldn’t read an article to save my life.  The next few summers I read a lot and got some stuff read and written, but I was also revamping our curriculum and designing an inordinate number of new courses.   Then I was department chair pre-tenure (aaaack!) – something you feel you can’t refuse when you haven’t been publishing so much because you have had surgery, and because you don’t want anyone to think you can’t handle it. Then my shoulders.  Then my back.  It never stops.  I honestly don’t know how much time I’ve lost to my disability.  Time that could have been spent being a better teacher, a quicker grader, a better researcher.

I just finished my “sabbatical,” which mostly turned out to be medical leave without officially being one.  I had my second shoulder replacement over the summer.  I was feeling great by September and ready to research my heart out when my back rebelled and put my academic goals on hold, and put my life at a standstill.  How do I explain that I wasn’t that productive over my leave?  Does it make it look like disabled people really can’t hack it?  Could I have “stopped the tenure clock” for my disability like people can for having, or adopting, children?  Some universities allow clock stoppage for chronic illness (for oneself or a loved one), but is disability a chronic illness?

I’m writing this only hours before I go in for a procedure to help alleviate some of my back pain.  A lot of people have back pain, it’s true.  Mine is directly linked to my disability.  I don’t walk right because of the way my anatomy works, and because of my knee replacement (which has left me with a partially fused knee), and because of my ankle arthritis, which has fused my ankle on its own, and… and…  This also means that my back pain is different than your average back pain.  I’m not an athlete who has beat up my body.  I’m not old.  I’m 38 and live with a disability that includes aggressive, early onset degenerative arthritis.  It sucks, but I can’t put it in my self-eval as a reason why I didn’t do all the things I want to do.

I have a feeling that people may raise the question of childrearing and how much time it takes.  Agreed.  However children grow up and be more independent, and if you’re careful or meticulous, you can plan your timing around your career.  Disability never grows up; mine will get worse.  I will say this: I got tenure because I put my body in jeopardy to work the 60+ hours faculty seem to work.  Now, I have tenure, and I can barely move.  Since then, I’ve decided that I could work 60 hours and put in my crip time on top of that, and destroy my body.  Or, I could do what I can do within that 60 hours, including crip time, and live with the consequences for my career.  What would you do?  Career or health?  For a long while, I thought it was like Sophie’s Choice, but not so much now.   I choose health.

I feel like there is more that I could, or should, say, but I’ll stop here.  By last blog was practically a novel, so if you want to know anything else, post a comment or question!

As food for thought, I leave you with this article.  It’s about chronic illness, but applicable, and insightful, nonetheless: “Chronic Illness and the Academic Career.”  Worth a read for anyone in academia: faculty, staff, administrators.

* I could not find data for faculty.  I supposed I could work harder to find it… but I won’t.  Also, according to the AAUP “only 42 percent of all full-time faculty members are women“.  Another source state that, in 1999, 14% of faculty were of color.  Not sure how much these figures have changed, but I’m including them for reference.

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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Une vie de chien: Partie I

I’m ending my holiday hiatus with a post about life with a service dog.  Well, several posts probably, because there is way more to life with a service dog than you think.  Sure, it’s great to have your best bud with you everywhere you go, but it’s about more than that.  Way more than that.  It’s about partnership, responsibility, a deep bond, and an ever deeper gratitude.

Today’s post is going to concentrate on the paradox of my life with Max; or, the way in which having a service dog mediates my disability, while also making it more visible.  A dwarf more visible, you say?  Yes, ’tis possible.  I’ll get there, but let me digress, as I am wont to do.

Just before the holidays, I did two things that got me settled on this being my next post: 1) traveled to New Orleans on vacation; 2) read Susannah Charleson’s book, The Possibility Dogs.  Charleson’s book offers profiles of several psychiatric service dogs and their handlers, interspersed with her own story of training a “demo” dog, the ever clownish Jake Piper.  It got me to reminiscing about my own experiences training Max, who is also an eternal clown.

Jake Piper, the demo dog

Jake Piper, the demo service dog.  www.possibilitydogs.org

Like Jake Piper, Max is a rescue, whom I trained one-on-one with a certified canine trainer and behaviorist.  It was one of the most intense endeavors I have undertaken, yet also one of the most rewarding.  I don’t think I would have truly appreciated the effort that goes into training a service dog without doing it myself first.  Another post will go into my training days with Max, but I think it’s worth mentioning here that service dogs are amazing animals whose training goes beyond skills and into behavior and compassion.  Before I get where I’m going (yes, I’ll get there), I want to urge you all to respect these dogs and their work and to respect them and their handler when they are working.  Do not talk to them, pet them, or even look them in the eyes.  These are open invitations for a dog to break their concentration, which could be harmful to the handler if their safety depends on the dog.  Part of the dog’s job is to focus on his partner; the partner’s job is to look out for the dog.  Sometimes, that means being harsh with well-intentioned people who try to interact with your dog.

Although The Possibility Dogs is about psychiatric service dogs (Max is a mobility service dog), it offers some valuable insight into daily life with a dog:

Another handler notes: “And here’s the kicker: It’s a kind of trade. For all the good help a service dog gives, that same dog makes you visible. If for you a ‘normal’ life is about being able to be anonymous, good luck. You and your dog and your disability had better be prepared for stares and questions . . . and sometimes accusations. It’s not all bad. A lot of the attention on the dog is supportive. But there’s almost always a spotlight. It slows you down.”

Charleson, Susannah (2013-06-04). The Possibility Dogs: What I Learned from Second-Chance Rescues About Service, Hope, and Healing (p. 38). Houghton Mifflin Harcourt. Kindle Edition.

It’s the notion of being in the spotlight that I want to talk about.  In my post “Welcome to Lilliput,” I wrote about how having dwarfism necessarily puts me under the spotlight, but having a service dog has not changed that so much as it has shifted the focus.  Obviously, my disability is not an invisible one; on the contrary, it is one of the most outwardly visible ones you can have, as my body is so far from the norm.  However, it is very easy for people to assume that the disability stops there: with height.  I’m short, so I can’t reach things, and I can’t walk as fast on those short legs.  Full stop.  Think again.  For some dwarfs, this is the end of the affair, but for a great number of us, there is a lot of complicated anatomy inside that odd, squat body.  (You can read more about dwarfism and disability in one of my Dwarfism Awareness posts).  (You can learn more about The Possibility Dogs project on their website).

I like to say that being a dwarf, or at least my particular experience of it, is to live in a liminal space, to inhabit the realm of both the visible and invisible disability.  For, I am so visibly different, yet to many, so invisibly “disabled” by my body.  I spent a good deal of time in college and grad school attempting to repress the disabled part of my persona.  I walked with crutches for 10 years, but leaving for college offered me the opportunity to shed those walking aids in a place where few people knew me from my life before.  Where my crutches helped me with speed and distance, I used a bike on campus to get from here to there.  In grad school, I used the T or a car.  This worked well for me until the long gap since my last major surgery started to close in on me in my late 20s, when my hips, which had long been severely arthritic, began to protest in earnest.  This was the beginning of a new phase of my life, and what I now see as the moment when I needed to start “owning” my disability.  I’ve had 5 artificial joint replacements in 9 years.  I’ve learned that the gap from my last osteotomy to my first replacement was the exception, not the norm.

Accepting the toll that my lax tissues take on my body has been a difficult journey, but to be honest, it started with the decision to get a service dog.  My husband had been kindly nudging me to get one for a long while, but I was always “looking into it.”  I don’t know what clicked, but I finally acquiesced in 2011, around my birthday.  Ironically, Jeevan and I were at the local shelter looking at some potential candidates, and I was walking a ginormous, yet gentle, St. Bernard (can you imagine that?) when my shoulder just gave out in pain. No reason. I had reached for my bag, and it just gave up on me.  I had been struggling with “bursitis” (self-diagnosis) for years but had begun weight training in hopes of strengthening the muscles.  In the end, those strong muscles did put off the inevitable for a while. The X-Rays showed the truth: my shoulder joints were gone.  Who knows how long they had been like that?  When you have arthritis everywhere, it just creeps from one place to the next without you knowing, taking secret root in your psyche.  Just another thing that hurts.  You don’t notice the toll it takes on your health.  The fatigue, the slowing-down, the grumpiness, the depression.  Again with the digression!  But, I spend time on the background info because it’s essential to my service dog story.  I had to come to terms with these things, to take stock of them, before I was ready for life with a service dog.  To get a dog was to admit that I couldn’t do it all on my own, or that I could, but at a dear price.

After the “shoulder incident” at the shelter, I ramped up my search for a service dog candidate.  I contacted a behaviorist to talk about what kinds of behavior a dog needed to show service potential.   Any breed has potential, she said, but it’s true that Labradors and Goldens are very successful mobility dogs due to their retrieving instinct.  Furthermore, with a breed rescue, you are much more likely to know the dog’s history than from a shelter.  This is so important for a service dog because even thorough evaluation at the shelter doesn’t tell you everything that a life with a foster can.  This is a dog who will go everywhere you go, who will encounter reactive dogs, people, and children. This dog will be an ambassador for other service dogs.  Everything’s gotta click.

I found my match through Lucky Lab Rescue.  This is truly an amazing rescue, entirely run by volunteers.  Not only did I end up with the best service dog a girl could have, but we have now fostered three dogs with them, and I have seen the work that goes on behind the scenes, and these people are amazing.  They are dedicated, and so organized.  And compassionate.  They led me to Max.  I filled out an application and was forthright in my intention to train the dog for mobility work, and I hoped this would not go against me in the end.  It did not!  An adoption coordinator called me and said that there was a list of dogs who would probably work, but I had to meet Max.  And, meet him I did.  He had me at woof.  He was 1 year young and a clown even then.  But, he was also confident, self-assured, but kind.  He was unflappable.  Four men banging around in a large truck with a lift?  Whatever.  I got this, lady.  You want me to meet your other dogs?  Even the crazy cattle dog rescue who hates everyone?  I’m a charmer, lady.  A charmer, he was, and is.  He’s the best.

The day I met Max.  Look at that face!

The day I met Max. Look at that face!

Again, I’ll get into the actual training later, but I want to talk about what Max does for my disability.  As the handler in the excerpt said, having a service dog puts you in the spotlight.  I’m used to the spotlight, but I’m used to the kind of spotlight you can pretend to turn off.  Someone staring?  Oh, I’ll just pretend I don’t see it.  Some kid just pointed me out to their mom (who pretends it didn’t happen)?  I can pretend it didn’t happen, sometimes.  (You’re lucky if I do).  I can just go on with my day if I desire.  With a service dog, it’s different.  As I said before, he’s an ambassador for all service dogs.  When someone makes what they think is a hilarious comment about how “hard” his job is when he is sleeping in a restaurant, I think it is my duty to say, “how many dogs do you know who could sleep while people step over him with steak?” It’s his job to be good while we aren’t working.  Sometimes, it’s his job to sleep, to lie down, to let people step on his tail, to let a chip fall by his face, to ignore the world that is not me.  This is tough, and many people seem to think it is their job to tempt him or to get him to break his service and then make a comment when he does.  What would you do if someone kept calling your name and telling you how pretty you are?  You’d wag your tail, if you had one.

I have to admit that I was too friendly about this behavior in the beginning, and so I let it slide, and now there are a lot of people around my small town who talk to Max.  Mostly, it’s when we’re not actively working, but I’m sorry I let it happen anyway. It’s not fair to him to turn back now; he wouldn’t understand.  I’m lucky that he resets very quickly.  He’s got a greet command and a command to get back to work.  I’m lucky he listens, really lucky.  Believe me, with my next dog, I will not do this again.  For the love of all that is right in the world, don’t pet the damned service dog. Don’t make kissy noises.  Don’t talk to it.  Don’t even ask.  It’s hard to say no, especially if you’re a people pleaser.  Make it easier for everyone: resist.

It’s also true that having a service dog slows you down. It is a huge responsibility.  Just “running in” a store is darned near impossible.  You have to gear up the dog, get the dog in the car, seatbelt the dog in, drive to wherever, get the dog out, stop and educate people, get your stuff, get the dog in the car, seatbelt the dog in, get in the car, driver home.  It’s a bit easier when, say, I want to run in my favorite coffee shop (go Roscoe’s!); they know him there, and they know he’s a service dog.  I can just put on his gentle leader and run in for coffee because I know I don’t need to use his bracing harness. Sometimes I brave places without his harness if I know I won’t need him to brace, but it makes me nervous.  There is no requirement that a service dog wear a vest or harness, but it helps.  Max does have a little badge that hangs off the leash, but I’m always risking some questioning when he’s not fully geared.

Max fully geared, under my feet on a plane.

Max fully geared, under my feet on a plane.

The other thing I have to put up with is the famous question:  What does your dog do for you?  This is fine from a business owner or employee, but it is intrusive in any other context.  It feels like I am constantly justifying my need for Max.  I am sure that that is not the intent, but it gets old, fast.  The ADA has this to say about service dogs:

When it is not obvious what service an animal provides, only limited inquiries are allowed. Staff may ask two questions: (1) is the dog a service animal required because of a disability, and (2) what work or task has the dog been trained to perform. Staff cannot ask about the person’s disability, require medical documentation, require a special identification card or training documentation for the dog, or ask that the dog demonstrate its ability to perform the work or task.  http://www.ada.gov/service_animals_2010.htm

I usually respond to random people asking this question with, “he’s a mobility dog, and I use him to brace., but he knows well over 50 skills.”  I don’t try to elaborate on what’s wrong with me.  Sometimes people push, but mostly they respect that.  I just wish they wouldn’t ask.  It’s personal.

Traveling ain’t a picnic either.  I have to pack for me, and for Max. He needs food, treats, a ball, some chews, extra poop bags.  I have to remember peanut butter for the airplane to help pop his ears.  Security is a nightmare.  New cities mean new people, and new service dog cultures.  Colorado is a dog place.  It seems everyone has a dog, and in the mountains, people let their dogs hike off-leash.  I hate this.  I hated it before, but I really hate it now.  Yes, your dog is friendly, but please, he cannot greet my dog.  He’s working.  See that slippery rock in my path?  He’s going to help me over it, but if your dog distracts him, he’s not concentrating and not bracing.  Put your dog on the leash!  New Orleans is also a dog city, and there are a lot of homeless people with dogs off-leash.  Makes me nervous.  I hope your dog is friendly, but if not, does it have vaccinations? Also, one bad encounter with a dog could ruin Max for service.  He cannot become afraid of dogs.  Paris is also a dog city, and my Lord, there are a lot of yippy dogs out there.  They tried to get Max every friggin’ day.

Max helping me snowshoe!  This is one of the ways he helped return me to a fuller life, even if people don't leash their dogs.

Max helping me snowshoe! This is one of the ways he helped return me to a fuller life, even if people don’t leash their dogs.

All this being said, I have to also say that having Max is worth every annoyance.  He has made my life easier on so many levels.  Traveling is a pain, but less of a pain than it was before.  Paris used to be so tough on me with its uneven sidewalks and steep curbs.  I prefer busses over the Metro because there are no stairs to navigate into subterranean stations, but there is that one big step, and the crowds.  I always hated getting places.  People never thought of me as disabled, so they wouldn’t offer seats or help. This last time in Paris, though, people offered to let me on first, and offered to help me up that step, even as Max was there to brace, and they offered me a seat.  He braced all over the cobblestones and awkward curbs.  He braced me all the way down the Pantheon steps, which don’t have railings.  This was, in fact, the first time I have been to the Pantheon. I have always avoided it because of the steps.  Thanks to Max, I got to see my beloved Hugo, Césaire, and Zola in their resting place.

Max enjoying the Eiffel Tower.

Max enjoying the Eiffel Tower.

Max takes me out of that liminal space and puts me firmly in the disabled camp. He mediates my disability by making my world wider, safer, and more mobile.  He also helps to mediate the fatigue, the slowing-down, the grumpiness, the depression.  He mediates stares.  People are usually way more excited to see a service dog than a dwarf, and that is fine with me, in the end.  I’d much rather have to educate people about Max than be the object of curiosity.  Children love to see Max (often mistaken for a horse, due to his saddle-like harness).  I’ve always had to educate people about disability, it’s just shifted somewhere else.  It is tough to always be in the spotlight, but I guess I prefer the gaze to be cast on my Max.  He’s a ham and loves to wag his tail coyly as I explain why he can’t be petted to a little kid.  It takes time, but it’s a worthy moment.  I’d really like to live in a world where I didn’t have to explain any of these things, but that’s a bigger job.  That’s why I write this blog.




From the outside in

As many of us have, I’ve been thinking a lot about race lately. Between Ferguson, Missouri, and New York, and the resulting protests and marches, I think you’d have to be living under the proverbial rock if you weren’t thinking about race these days.

What’s really got me bothered, though, is the blindness I see from fellow white folk on FB, Twitter, and the like. You can’t turn around without someone taking a stand: you’re for the police or for people of color. If you honestly think race in America is that simple, then you’ve got some soul searching to do.

I’ve thought long and hard about whether or not I should write a post about race. It’s tough, but I felt I should weight in. No, I am not a person of color, but I am married to one. He’s not black, but brown, and that comes with its own set of issues. However, I am part of a minority, and I know first-hand the feeling of snap judgment and prejudice. Don’t get me started on the number of hurtful things I’ve seen spread in the media about people with disabilities and Obamacare when it comes to coverage of pre-existing conditions. Life on the outside of mainstream culture, whether it’s because of race, gender, sexual orientation, disability, etc. is not easy, and I’ve decided that anyone looking from the outside in has valuable insights to offer.

That being said, there is also a fine line between advocacy and speaking for a group to which you do not belong; there is an excellent piece about this for trans awareness that you can read in the Huffington Post. Being close to a group is far from sharing the experiences of that group. I do not know what it is like to be pulled over for “driving while black,” but, as a woman, I know the potential fear of being pulled over at night by an unmarked car. The experience is not the same, but there is a shared pervading disquiet. Though, I’m pretty sure that if a woman expresses her right to drive to the nearest police station before continuing the interaction, she has a better chance at being respected than a black male who might ask for the same.

What I’m trying to get at is the shared experience of institutional discrimination. This is a very real phenomenon shared by people in the margins of society. You can see my previous post about it: 21 October, 2014 – Discrimination, Partie Deux. We live in a society created for and by white males. This is why things like feminism, LGBTQ activism, disability awareness, and civil rights movements count: their goal is to effect change (yes, that’s the correct spelling of the verb – I checked) to the structure. It is very easy for those within the structure to see no problems with it, because it does not harm them. The world of business is a patriarchal structure based on paradigms of male leadership, which make it easy for us to pigeonhole any strong woman in a leadership role as a bitch (Hilary Clinton, anyone?)… The aim of feminism is to change the paradigm to a new structure, and not necessarily one that favors the feminine either (though, they are out there). Most activists for any marginalized group really want to create a new structure, to start fresh. But… this is always frightening to the current people in charge.

The caricature of the black male so pervasive in the coverage of recent events has got me thinking about Richard Wright’s Native Son, which I have taught in a freshman seminar for the past two years in my “Capital Punishment in Literature” course. Though we talk about other books like A Tale of Two Cities, In Cold Blood, and The Last Day of a Condemned Man, amongst others, I use Native Son as a vehicle to talk about race and the justice system. It was actually the Troy Davis case that gave me the idea for the class, but every year, there seems to be something else relevant and contemporary to talk about the 21st century justice system. Trayvon Martin had been killed shortly before my first session, and George ZImmerman was acquitted just before my second time around. If I were teaching the course this year, I’d not have a shortage of material. How can a novel that was published in 1940 about race in Black Belt Chicago still be so informative today? I was looking back at my underlines and textual notes, and so much of the marks echoed the sentiments expressed in recent protests.

Even the introduction rings true to the contemporary endeavor:

“The sound of the alarm that opens Native Son was Richard Wright’s urgent call in 1940 to America to awaken from its self-induced slumber about the reality of race relations in the nation. As proud, rich, and powerful as America was, Wright insisted, the nation was facing a grave danger, one that would ultimately destroy the United States if its dimensions and devious complexity were not recognized. Native Son was intended to be America’s guide in confronting this danger.

Wright believed that few Americans, black or white, were prepared to face squarely and honestly the most profound consequences of more than two centuries of the enslavement and segregation of blacks in North America. The dehumanization of African Americans during slavery had been followed in the long aftermath of the Civil War by their often brutal repression in the South and by conditions of life in many respects equally severe in the nominally integrated North. Nevertheless, Wright knew, blacks and whites alike continued to cling to a range of fantasies about the true nature of the relationship between the races even as the nation lurched inexorably toward a possible collapse over the fundamental question of justice for the despised African American minority.” (Introduction to Native Son by Arnold Rampersad).

Richard Wright

Richard Wright

What Richard Wright’s attempted to show in his novel was the deep underbelly of racism, to expose it at the roots. For him, the conditions of people of color living in Chicago were symptoms of a greater illness: an entire society built on, and repeating, slavery. Really, it’s institutional racism. Institutional racism isn’t always conscious; in fact, based on the reactions to Ferguson and NY, I’m guessing that most people don’t believe it because they don’t see it (I love this explanation of institutional racism). People think of racism as an individual act, but it runs much more deeply than that, as it is ingrained in our social institutions: law, government, education, business, etc. The fact that so many of our institutions and their policies disenfranchise a variety of groups (e.g. the disabled, the poor, the elderly, the mentally ill) implicates us in those very systems if we do nothing about it. An educator who does not speak up when accessibility is violated, who does not speak up when a colleague is mistreated, who does not question disparities in their own school, or someone who sits quietly by because “things never change,” perpetuates those injustices. If we do not lead by example and teach our young people to question and think critically, then things may really “never change.”

One of the products of our unequal social foundations is that word that people throw around, but is nevertheless very true: white privilege. It’s really easy for white people to come to the defense of the police and call Michael Brown a thug. In a culture where the black male is the archetypal perpetrator, it is so easy to dismiss his death because he somehow “had it coming,” even though he didn’t. I know plenty of white thugs who really had it coming, but never saw the end of the barrel. Al Capone, anyone? As far as I know, in this country, you are innocent until proven guilty. Brown did not enjoy the due process that was his right, because of a snap judgment created by the culturally accepted norm of the angry black man. The face of the stereotypical cop is a white one, and we trust our own and fear the other. It is so easy to do. That said, it is possible to support police and call out the inequities of our current system.

Are cops racist? I don’t think so. (Though there are exceptions to every rule – think about the scandal in Ohio at the moment). That’s like saying all men are rapists. I’ve known a fair number of cops, and each of them has been awesome and committed to the notion of “protect and serve.” I do not question that. But, the justice system as a whole, as a product of our society, feeds into the stereotypes of black man as criminal, of brown man as terrorist, of Latino as illegal. As a member of the dominant society, it is so easy to fall prey to the images spread by the media of the black gansta, the flaming faggot, the butch dyke, the confused tranny, the retarded crip, without thinking too much about it. By blindly accepting those images, by not questioning them as they fly by our hyper-connectivity, we are complicit in these systems that disenfranchise. If we do not question the system, we tacitly accept it as just. However, I must also not that criticizing a social structure is not equivalent to judging the individual people working in the system. I take my hat off to all the men and women who choose to protect their communities; they are indeed under a pressure that most of us fortunately do not know.

By the way, I don’t use the pejorative terms above lightly. There are people who do use these words amongst themselves, when none of these people can hear. Or, even in public, on social media in online news sources when these people can hear and see. We live in a culture where people living outside the norms are caricatures of “real people.” It’s really easy to convince yourself that these lives don’t matter, that our side is the right side, because “they have it coming.” White privilege (and straight privilege, and cisgender privilege, and able-bodied privilege… and… and) are all real.

Was Michael Brown a thug? I honestly have no idea, and I don’t care. What I do care about is the fact that this is just one drop in the bucket of a string of “shoot first, ask later.” I shouldn’t have to be nervous when my husband and his brother are pulled over in the middle of the night in Arizona only two years after 9/11. But, the fact is, I’m still scared more than 10 years later. My husband is a physician, an American. People feel better when I explain that to them, but don’t you see the problem with that? I have to explain it to them. And it shouldn’t matter where he was born. People shouldn’t feel better when he doesn’t have an accent, but they do. People shouldn’t feel better when a black man sounds “so well spoken” (i.e. white), but they do. Straight men and women shouldn’t feel more comfortable around “normal-seeming” gay/lesbian folk (i.e. passing for straight), but they do.

Our culture is infused with norms that are unfair. What the #blacklivesmatter movement means is important. It’s not about one man but about a system that needs to change, and it cannot change without white people, and other people of color. What it means is that we need to open our eyes and be courageous enough to stand up for change, even if it means our own group looses a little bit of power. Imagine what we could learn if we let everyone have a valid voice? How much brighter would be our society?

I leave you with a few excerpts from Native Son to ponder in light of current events. When times were different? image

BOOK I: FEAR
Bigger and his friends “play white”:

They were silent again. Presently, Bigger cupped his hand to his mouth and spoke through an imaginary telephone transmitter.

“Hello.”

“Hello,” Gus answered.

“Who’s this?”

“This is the President of the United States speaking,” Bigger said.

“Oh, yessuh, Mr. President,” Gus said.

“I’m calling a cabinet meeting this afternoon at four o’clock and you, as Secretary of State, must be there.”

“Well, now, Mr. President,” Gus said, “I’m pretty busy. They raising sand over there in Germany and I got to send ’em a note….”

“But this is important,” Bigger said.

“What you going to take up at this cabinet meeting?” Gus asked.

“Well, you see, the niggers is raising sand all over the country,” Bigger said, struggling to keep back his laughter. “We’ve got to do something with these black folks….”

“Oh, if it’s about the niggers, I’ll be right there, Mr. President,” Gus said.

They hung up imaginary receivers and leaned against the wall and laughed. A street car rattled by. Bigger sighed and swore.

“Goddammit!”

“What’s the matter?”

“They don’t let us do nothing.”

“Who?”

“The white folks.”

“You talk like you just now finding that out,” Gus said.

“Naw. But I just can’t get used to it,” Bigger said. “I swear to God I can’t. I know I oughtn’t think about it, but I can’t help it. Every time I think about it I feel like somebody’s poking a red-hot iron down my throat. Goddammit, look! We live here and they live there. We black and they white. They got things and we ain’t. They do things and we can’t. It’s just like living in jail. Half the time I feel like I’m on the outside of the world peeping in through a knothole in the fence….”

BOOK III: FATE
Bigger’s lawyer, Max, defends Bigger:

“His entire existence was one long craving for satisfaction, with the objects of satisfaction denied; and we regulated every part of the world he touched. Through the instrument of fear, we determined the mode and the quality of his consciousness.

“Your Honor, is this boy alone in feeling deprived and baffled? Is he an exception? Or are there others? There are others, Your Honor, millions of others, Negro and white, and that is what makes our future seem a looming image of violence. The feeling of resentment and the balked longing for some kind of fulfilment and exultation—in degrees more or less intense and in actions more or less conscious—stalk day by day through this land. The consciousness of Bigger Thomas, and millions of others more or less like him, white and black, according to the weight of the pressure we have put upon them, form the quicksands upon which the foundations of our civilization rest. Who knows when some slight shock, disturbing the delicate balance between social order and thirsty aspiration, shall send the skyscrapers in our cities toppling? Does that sound fantastic? I assure you that it is no more fantastic than those troops and that waiting mob whose presence and guilty anger portend something which we dare not even think!

A post of thanks

“Cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously. And because all things have contributed to your advancement, you should include all things in your gratitude.” ― Ralph Waldo Emerson

In spirit of Thanksgiving, I’ve decided to write a post of thanks.  This one isn’t going to be theoretical or academic, but rather a long overdue thanks to those who have helped me over the years.  You see, living with a disability often means time complaining about your body or time in the hospital, or time when you’re wrapped up in your physical Self for a bit.  We all have moments when we become more self-absorbed than we should be, when we talk about ourselves a little too much, or ask a lot from friends, and I think we also forget to say thanks.

I’ve been wrapped in my Self a lot the past three years, as my body has been on a new, and not-so-secret, mission to get me down lately.  My ankle has been bad for a long time, but it’s one of those things I can’t do anything about, and so it has become a silent, gnawing part of my day.  But, I thought that my knee surgery in 2007 was going to be it for a while, I really, naively, did.  However, my left shoulder gave out in 2012, and it’s been downhill from there.  I’ve had two major surgeries in a year, and now my back hates me.  My other ankle is chiming in as well.  Good times.

Since then, I’ve called on friends and family, and they have risen to the challenge.  They have listened while I’ve cried about feeling as though I am in my 30s but live in a 70-year-old body. They’ve listened while I wonder how much longer my body can take my 150-mile roundtrip commute.  They’ve listened as I fearfully ponder what new challenges my body will throw at me as I age.  They’ve babysat me after surgery, brought food, and took time out of their own lives to bring me laughter and support.  For this, I thank all of you who have been on the other end of my diatribes and sobbing.  I probably don’t say thanks enough, or at all.  Thank you.

I have to give some shoutouts to specific people:

“I sustain myself with the love of family.” ― Maya Angelou

First, my husband.  It’s a cliché, I know, but he’s my rock.  He lets me cry and feel sorry for myself when I need to, but he also tells me to suck it up and keep my body in good shape.  Though I would prefer to drown my sorrows in gooey chocolate, he encourages me to eat healthily and exercise.  He’s a coach and a cheerleader.  He’s got my back.  He is the best teammate a person could have.  I know it’s not easy to watch me on my bad days; no one likes to see someone they love in pain.  Unfortunately, he has to do it more often than I do.  He’s got the most comfortable shoulder to cry on, and his hugs are the best.  There’s palpable compassion, love, and strength in them.   Simply the best.

My mom.  Oh my, I cannot even think where to begin.  She was my biggest advocate as I was growing up.  She fought with schools and teachers, jeopardized her job for time off, and dragged me to doctor after doctor.  She taught me to speak up for myself when I was an angsty teenager who wanted to blend in.  She’s also been there for the surgeries… so many surgeries.  For my first shoulder surgery, she came to stay for 7 weeks.  Yes, she left my lovely dad and her two dogs, four states away, to do the things moms do best.  Parents never stop caring for their children, and I know each new medical challenge that arises pains her heart.  I’m sure it’s not easy.

My dad.  My dad is a dork and keeps me laughing.  He’s taught me to not always take myself so seriously.  If you can’t tell a stupid joke and laugh, then what’s the point?  My dad is a “trucker,” and I don’t mean he drives a truck; he keeps truckin’ on.  What an example!  I grew up with him as the epitome of the American work ethic.  He worked for the same company as long as I can remember, until I was in grad school.  His loyalty and commitment taught me to keep on in my own pursuits: at school, at work, and with my disability.

My brother.  I’m sure it wasn’t easy having a kid sister with a disability, a sister who got all kinds of attention during surgeries and procedures, and the days out of school for doctor’s appointments and x-rays must have seemed totally unjust.  The teenage years are always rough on the psyche, and who knows how my medical issues played a role in that.  I hope not too much.  We haven’t really talked about it.  Maybe we should.  My big brother is a thinker, and sometimes he surprises me with a gem of an observation about something I’m going through, and it means a lot, that thinking about me.

My in-laws.  All of them.  I suppose that it’s unhip to love your in-laws, but I do.  From J’s parents to his brother and his wife and daughter, to the aunts and uncles and cousins.  They are all so supportive, like blood relations.  J’s mom has spent weeks here helping out during surgery, and right now when my back is acting up, she’s done the cooking and the driving that I can’t do easily at the moment.  J’s dad is running around Chennai checking into alternative therapies, calling and boosting morale; in fact, everyone calls and checks in.  I feel like family.

“She is a friend of mind. She gather me, man. The pieces I am, she gather them and give them back to me in all the right order. It’s good, you know, when you got a woman who is a friend of your mind.” ― Toni Morrison

My friend C.  She’s amazing, and I don’t think she knows how much.  She stayed with me a week after my first shoulder surgery, and she rocked it.  She cooked the best food and just sat next to me, quietly reading, while I slept the sleep of the drugged.  She saw the worst parts of surgery.  I’m a vomiter.  I vomit from pain pills, from anesthesia, from migraines.  She was there for the vomit, the worst of the pain, the most helpless phase.  She was awesome.  She continues to be awesome.  We talk every week, and I probably monopolize the conversation as I delineate my latest bodily complaints.  I need to listen to her more.  She’s got a lot going on herself, and I am trying to make the effort to be the kind of friend she has been to me.  She’s new to academia, so she’s forgotten how wicked smart she is.  Academia has a way of doing that.  So, I’m telling her here:  you’re wicked smart, caring, thoughtful: quelqu’un de bien.

My other friend C.  I think she’s psychic.  She somehow knows when to text or call.  We also have the most odd maladies two people could have.  She’s the person with whom I can complain and laugh in the same breath.  Together, we are Murphy’s law: if it can happen, it will happen.  She also keeps me reading, which is essential.  I’ve always followed C.S. Lewis’ thoughts on this subject: “We read to know we’re not alone.” Reading keeps me out of my Self, concentrating on worlds of images and ideas.  Plus, it keeps me and C connected even through spells of silence.  There’s something lovely about reading something, knowing that the other person is reading it too.  I’ll see a passage and think, “I wonder what C thought of this, or if she’s read that part yet.” Sometimes we text about it.  It’s our way of keeping in contact.  It’s weird, but we’re always in contact, even when we’re not, and that’s a comfort.

My friend D.  This lady here let me stay at her apartment twice a week all last academic year so the commute wouldn’t be so tough on my body.  We enjoyed talks, cards, and wine (medicinally, of course).  Friendship, in a nutshell.

My FB friends.  A lot can be said about the dangers of over-cyber-connectivity, but I do think it has a the potential to create a strong and vast support network.  No, we aren’t going through the same things, but reading about people’s everyday struggles, and big struggles, puts life into perspective.  We’ve all got stuff: good stuff, funny stuff, sad stuff.  I like reading the stuff.  Also, it was my FB community who forced me into writing this (very cathartic) blog.  How could that be bad.

Happy Thanksgiving, and thanks for being there.  You make me happy!

Good Cripple, Bad Cripple: At the Movies!

One thing that has always confounded, and annoyed, me is the trope of “overcoming” disability in cinema.  For me, it is akin to the Magical Negro character in Hollywood films, à la The Legend of Bagger Vance, Driving Miss Daisy, or The Green Mile.  Basically, the Magical Negro is a term to describe a black character who helps some sad white person overcome whatever is ailing them.  There has been a ton of academic work out there criticizing this trope, but I think this comic sums it up nicely.

Magical, no?

What does this have to do with disability?  Well, see, tropes exist because we can recognize them, and they help us understand ideas as a society.  While Americans use the Magical Negro trope to engage in (misguided) discourse about spiritual awakening, I argue that the equivalent trope for disability is the tale of “overcoming.” For me, this trope is one in which the bitter (bad) cripple learns to triumph over more often his, though also her, broken body with the help of friends, just like the Beatles song.  It’s not always a bad cripple; sometimes, it’s someone who becomes crippled or who is diagnosed and must come to terms with the loss of a functioning body.  Whatever the scenario, the character usually ends up the archetypal “good cripple,” spreading joy and inspiration to mankind.  The tale is made for regular folk to feel better about their lives, and bodies.  If so-and-so can overcome their pain and suffering, I can deal with my troubles.  Yes, I can!  Woohoo!  Now, I can leave this movie and feel happy and not have to worry about what it’s like to be disabled, because they are all OK!  Such a warm and fuzzy time.

The most recent example of this is the new film about Stephen Hawking: The Theory of Everything.  Not only is he a brilliant mind, but he’s so inspirational.  I mean, how can someone want to live like that?  And be a genius?  It’s too much for us to think about and not want to utter the words, “inspirational.” I mean, look at the trailer:

Oooh, ahhh.  It could be a musical.  It makes me want to throw ice water over myself.

But let’s talk about the real Stephen Hawking.  He is brilliant, not in spite of his disability or because of it.  He was always brilliant. (He did get some stuff wrong, but so did Einstein).  In fact, he pursued his science at the detriment of personal relationships.  This has everything to do with the pursuit of the gifted mind and not a broken body.  He is an astrophysicist who is also disabled, not a disabled astrophysicist.  Equally, I am not a dwarf French professor; I am a badass French professor who happens to have pseudoachondroplasia.  Oh wait, here’s what the man Hawking himself says about his disability:

“If you are disabled, it is probably not your fault, but it is no good blaming the world or expecting it to take pity on you. One has to have a positive attitude and must make the best of the situation that one finds oneself in; if one is physically disabled, one cannot afford to be psychologically disabled as well. In my opinion, one should concentrate on activities in which one’s physical disability will not present a serious handicap. I am afraid that Olympic Games for the disabled do not appeal to me, but it is easy for me to say that because I never liked athletics anyway. On the other hand, science is a very good area for disabled people because it goes on mainly in the mind. Of course, most kinds of experimental work are probably ruled out for most such people, but theoretical work is almost ideal. My disabilities have not been a significant handicap in my field, which is theoretical physics. Indeed, they have helped me in a way by shielding me from lecturing and administrative work that I would otherwise have been involved in. I have managed, however, only because of the large amount of help I have received from my wife, children, colleagues and students. I find that people in general are very ready to help, but you should encourage them to feel that their efforts to aid you are worthwhile by doing as well as you possibly can.” ― Stephen Hawking 

There’s a lot to unpack here, but you probably get the gist.  There’s a tad of the good cripple lurking in there, but generally, Hawking is a pragmatist.  He did what he could do and that for which his mind was made.  He also got out of a bunch of academic work that he didn’t want to do.  Smart.  I’m filing that away in my brain the next time I’m asked to chair a committee.  Can you chair the ad-hoc committee on the use of the basement in the library?  Nope.  I’m busy because everything takes longer when you’re disabled.  Sorry.  But, if you get that elevator to work better and add some ramps and handicapped parking, I’ll think about it.

The New Yorker has this to say about the film:

It’s also a revelatory portrait of his strength, including his surprising gaiety, the jokes and the ironies that he drew from God knows what reserves of energy. In this movie, his illness and his productivity are intimately linked.  New Yorker, 10 November 2014 “Love and Physics: Interstellar and The Theory of Everything.

Sounds pretty “overcoming trope”-ish, if you ask me.  I am going to coin a word for this: Cripptrumphant.  If you use it, please, please give me credit.  I want to be famous for making up a word.  Add it to Urban Dictionary.  Do it.  And link back to the blog.

Though I’ve gone on and on about The Theory of Everything, you can see this trope in tons of films, such as: My Left Foot, The Diving Bell and the Butterfly, Passion Fish, Temple Grandin, and Intouchables.  (There is also the trope of the happy mentally disabled, – I am Sam, Forrest Gump, The 8th Day – but we’re not talking about this here.)  Don’t get me wrong, I enjoy the feel-good nature of these films, but at heart, it’s a difficult trope for those of us with disabilities.  It makes it very difficult for us to live ordinary lives when everyone wants us to be extra-ordinary.

I’m actually working on a paper for the 20th/21st Century French and Francophone Studies International Colloquium about the international hit film Intouchables.  This film has made a lot of Americans angry for its use of the Magical Negro trope, but not much has been said about the overcoming disability trope.  I’m not going to tell you much about the paper now, but I’ll let you know when it’s finished!

One more thing before I go.  Joseph Campbell argued that tropes and archetypes teach us about humanity.  His famous work on the Hero’s Journey was famously used to explain the Star Wars saga.  We use the familiar structure of the hero to give meaning to the human experience.  If you’ve seen Interstellar, same thing.  There’s a nice restructuring of Campbell’s work in Maureen Murdock’s The Heroine’s Journey; you can see a nice summary of both here: The Hero’s Journey.  While I know that Jung is largely out of favor in terms of psychology, I do think that Campbell understands something about the metastructure of the human mythos.  While his explanation is a bit male- and ablist-centric, he has a lot to offer in terms of how and why tropes/archetypes are important to build meaning.  I think I just might come up with another iteration: The Cripple’s Journey.  Again, don’t steal my idea!

I leave you with another archetype: Supercrip! Maybe another post…?

Check out more humor at: https://cripstrips.wordpress.com/