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.