Book Review: Life Is Short by Jennifer Arnold, MD & Bill Klein

245 words 

2 minute read

I have been so excited about this book and having the opportunity to read it over the past four days, I can say that it did not disappoint.  I very much enjoyed reading about the lives of Dr. Jennifer Arnold and her husband Bill Klein - and even a little about their two children, Will and Zoey.

Because I don't want to spoil it for others who may be looking forward to reading it themselves, I'll keep my review fairly general.  There were very few things I disliked.  There wasn't much about their current family life (only the very last chapter) but that I can understand, in terms of respecting their children's privacy.  The "we didn't let our disabilities hold us back" narrative was a bit strong at times. but overall, not intrusive.

I really enjoyed the alternating POVs in each chapter, and getting to know both Jen and Bill individually.  I loved learning how they adapted in different situations.  I related to many of the things they shared in the book, from stories of discrimination, to surgeries as children, to even dealing with depression in college.  I also loved learning a bit more about Will and Zoey and the adoption processes for both kids.  It was great to read more about Jen's career, as well.

Definitely a worthwhile read.  I really enjoyed it!

Follow Jennifer Arnold MD on Twitter
Follow Bill Klein on Twitter

***

Don't forget to connect on Facebook / Twitter / Instagram

From a NICU Baby...to my friend...a Soon-to-Be NICU Mom

438 words

3 minute read

It's strange to be on the other side of an experience - to know that everything can be okay - while watching someone else go through something similar.  A friend of mine is expecting.  She will deliver a premature baby.  A premature baby who may have Cerebral Palsy.  When my friend was hospitalized earlier this month, she had asked me how far along my mom was when she had my sister and me.  After initially providing the friend with some faulty information I believed to be true, I got the real answers from Mom and Grandma.  We were born at 31 weeks.  9 weeks early.  June babies with a September due date.

My friend's baby also has a September due date.  While talking to my grandma about this, she asked where my friend was hospitalized.  I named the facility (which has a great NICU) and to my shock, Grandma told me: "That's where you were!  That's where they took you by ambulance after you were born!"

She told me stories about how the ambulance driver made the two-hour drive to pick us up in 40 minutes.  How they filled gloves with warm water and placed them beside my sister and me to keep us warm.  How the person who came to baptize us could hold each of us in one hand.  How my sister spent her first three months at this hospital, and I, my first eleven months.

I couldn't resist texting my friend, at that very hospital and on bed rest, with the news, and the following picture:

So...guess who else spent their early months right where you are?

My sis (left) was home by the time we were 3 months old.   I was still hospitalized.  When she came to visit, we sometimes fell asleep holding hands.

It's such a unique perspective, to be sitting on the other side of this experience, as a once medically fragile preemie myself, and to be able to cheer on my friend, who is a day shy of 26 weeks (still pregnant) with her little one.  

I am not naive.  I know the road will be difficult.  But I have so much confidence that she is in the best place possible.  The place that nurtured me and took care of me (and my sister) when we were so very little.  I believe they will take care of my friend and her baby just as well as they took care of me so many years ago (and they have done such a great job already!)  

I love knowing that it gives her peace to know we have been there, and that we are okay.  

Making a Mountain Out of a Molehill

428 words

3 minute read

When I was in kindergarten, my great grandma made me little cloth pockets that hung over the back of my walker, so I could carry things with me more easily.  I think it's safe to say that my five year old classmates had never been around someone like me.  As much as I tried to park my walker to one side, to leave the aisle clear for passing children, inevitably, first one kid, and then another, would ask, "Can I go through your mole hole?"  (It was an expected malapropism, having probably overheard the classroom teacher comment that the area between the pockets and the floor was similar to a molehill.)

Often, I said yes, eager to make friends, but unsure of how.  Maybe if I let them crawl under my walker on the way to the front of the class, they'd like me.  There were times, though, too, when I would say "no."  In my fuzzy memory of kindergarten, not one kid walked around my walker when I denied them molehill admittance.  I learned, at five, that my voice, my no didn't matter.  This was reaffirmed at various points in my life.  Other people's opinions mattered more.  So I became quiet, compliant, and reluctant to speak up.

You wanna go through my mole hole?  Sure.  You wanna call me names?  Totally used to it.  Spit a mouth full of food on me?  It's not like I can do anything to stop you...

Perhaps that's why, all these years later, I find myself less willing to bend about things that really matter.  How I identify should not be dictated by someone else.  I will insist my own language preferences be restored.  What I have to say about how I identify should not have portions redacted.

I am still quiet, but I am no longer compliant or reluctant to speak up.  If that means losing out on opportunities, then that's what it means.  These are not small issues.  These are basic.  Just as a disabled child's consent concerning their adaptive equipment should be respected at age five, a disabled adult should be heard about issues that concern them.

We are human beings.  We are complex.  We deserve to have control over our bodies and adaptive equipment.  We deserve to be viewed through more than one version of one stereotypical narrow lens.  We deserve to speak out about issues that concern us, without being ignored by classmates, or parents, or faculty.

Keep speaking out, disabled friends.  Our voices matter.

***

Don't forget to connect on Facebook / Twitter / Instagram

Self-Identifying as Disabled

772 words

6 minute read

This morning, I read the post about a woman in a wheelchair who won (among other prizes) a treadmill.  Apparently, based on the Twitter reaction, people find this "terrible", "awkward", and "horribly inappropriate."  Danielle Perez (the woman in question) was not bothered in the least, and finds it "hilarious."  Her reaction is more along the lines of how I feel.  Because as a disabled person, there are bigger fish to fry than game show prizes that are not tailor made for you...

Like, for instance, choosing to identify as disabled.

The word disabled, apparently, makes people super uncomfortable. Uncomfortable enough that recently, I've had my identity first language (disabled) changed to person first (person with a disability.)  I've had people read things written by me where I clearly identify as disabled, and they contradict my words:  "She's not disabled she's enabled."  In this case, they found "enabled" to be more positive language.  That seems to be the assumption.  Language gets changed because other (presumably able) people believe it is negative.  I have friends whose identity first language was brought to them as problematic by able-bodied people, who seemed to think that my disabled friend used the language due to an oversight.

A lot of this thinking is due to what we're taught.  Once upon a time, I briefly pursued a major in Special Education.  There, I was taught that person first language was the only correct way to identify disabled people.  For a long time, I identified that way myself.  I was a person first, after all.  It wasn't until I came to the social media site Tumblr and connected with the disabled community there, that I was exposed to the social model of disability.

The way I explain the social model of disability to people who are unfamiliar with it is: the world was primarily built for able bodied people. If we were all expected to fly to get around, with nothing to aid us, and the only accessible places were in the air, all of us would be disabled in that case, right?  None of us knows how to fly by flapping our arms.  Able bodied people are able bodied because society is made for them.  Able bodied people can access anything they need to: public places, transportation, their entire houses, they have ways out of their houses.  Able people (if they are also white) don't have harmful attitudes and stereotypes perpetuated about them.  Able bodied babies are not presented in utero as tragedies, and parents are never presented with abortion as the first option when carrying a likely able bodied fetus.   If all the world had accessible housing and transportation, and schools and healthcare and provided mobility aids the way expectant mothers can shop for strollers and/or drivers can shop for cars, I would not consider myself disabled.

The fact is, though, this is the world I live in.  I am disabled.  It is a reality for me, and an integral part of my identity as a human being.  I would never accept someone telling me "You're not a human being!  You're a being with humanness!"  For me, being disabled is an inextricable part of my personhood.  Able bodied people changing my self-identifying language is rude and presumptuous.  It assumes that able people know better than I do about what is right for me.  For me, disabled is not a negative word.  It's part of what makes me who I am, and part of what connects me to a larger community of disabled people.  Our shared experiences with inaccessibility, ableism, adapting, symptoms specific to our diagnoses and more are all part of what makes us who we are.

As many different able bodied people that exist in the world, there are just as many different disabled people.  Some of us prefer identity first language.  I know of disabled people who do prefer person first language, too.  I even have a friend who self-identifies as a cripple.  It's  a word I personally loathe, but they find it very empowering.  Disabled people are not all the same.  If you are curious about the language your loved one prefers, always ask them first, and then respect that preference.  Know that the language they prefer might evolve as they do.

Able friends, please respect us enough to not impose your own identifying language for us over our own, and disabled friends, be proud of who you are and how you identify.  Don't be afraid to speak up, when someone challenges how you choose to speak about yourself.

I am disabled and proud!

***

Don't forget to connect on Facebook / Twitter / Instagram

Scene Review: Grey's Anatomy 8x24 "Flight"

225 words

2 minute read

This is one of my favorite moments on Grey's Anatomy, because it so clearly demonstrates adapting and how organically it happens.  

Often, when disabled people encounter different future situations, able bodied people will ask, "How are you going to do that?"  The answer is, honestly, usually, "I'll figure it out."  Because it's hard to foresee just how we will adapt in a new situation until we're in it.

In this scene, several of the doctors have been in a plane crash.  All are injured - some more severely than others.  In this scene, they discover that Dr. Sloan, whom they previously believed to be relatively unhurt has internal bleeding.  As they are all surgeons, they can approximate based on his symptoms, where the bleeding is and try to treat it, using what's there.

The compelling moment in this scene comes at 1:46-1:53 (if you are squeamish and don't wish to see medical procedures performed in the hospital or in the woods, for these few seconds, you'll be safe to watch.)  In this moment, you see Dr. Yang (who has a shoulder injury) and Dr. Derek Shepherd (who has a massive injury to one of his hands) successfully work together with the two hands between the two of them to hold and unscrew a bottle cap:

***

Don't forget to connect on Facebook / Twitter / Instagram

Scene Review: Grey's Anatomy 10x11 "Man on the Moon"

337 words

3 minute read

Those of you who know me know I've fallen in love with Grey's Anatomy.  I find it, overall, to be fantastically compelling.  It's hit and miss (in my opinion) with regard to disability representation, at least physical disability representation.  I find a lot of the portrayals of mental illness to be more accurate.

But I wanted to take a look at this scene (through :45), where we have Dr. Arizona Robbins (in the white lab coat) who is, at this point in the show, an amputee.  Her coworker, Dr. April Kepner (in the navy blue scrubs) approaches, and is flanked by her three sisters, who are in town for April's impending bridal shower.  They have never met Arizona before, and their awkwardness here knows no bounds:

The thing is, this is super realistic!  The ableist attitudes we, as disabled people face by complete strangers is just this awkward!  It doesn't matter where I am (home, the store, out of state) I have strangers coming up to me often enough to say things just like this!  I have gotten variations of "You are such a good walker!" and it's so strange.  Too often, I react like Arizona (who can't very well tell off April's ableist sisters in her place of work) just smiling and nodding until they walk away.  I do enjoy April making several attempts to shut them down, though.

If you're disabled, you'll probably totally get this post, and if not, here's a tip:  If you see a disabled person and want to say something about how they physically move through the world but you don't know them?  Keep it to yourself.  We're like Arizona, at work (or at home, or at the store) just living our lives.  We don't like being patronized.  So, if you're in the middle of regaling us with the tale of your three-legged cat and how well he hops along and inspires you?  Listen to April and just "stop talking."

***

Don't forget to connect on Facebook / Twitter / Instagram

Movie Review: You're Not You

975 words

8 minute read

I was asked to review You're Not You yesterday by a friend, who said they would "love to have [me] pick it to pieces."  Well, friend, your wish is my command.

This movie had several good things going for it, and I'll start with those.  First, in the credits, there was an ALS consultant listed, which is so great, and is something sorely lacking in a lot of media featuring disabled characters.  Likely because this consultant on set, the movie was able to portray a realistic progression of ALS symptoms in Kate.  It touched on the very real and dangerous subtle ways disabled people can be mistreated by their caregivers (which we see with Kate's husband.)  I liked that Kate spoke for herself and advocated for what she needed, and I liked that the blatantly ableist moments in the film (mostly with the husband taking action concerning Kate without asking her permission) were, for the most part, shown to be wrong.  Even the awkward moment when Bec's father is repeatedly asking Kate for clarification of her speech when Bec is busy.  I could tell by the way it was portrayed that it was meant to be viewed as rude and awkward.  It was awkward, but asking for clarification when you don't understand someone is ultimately a sign of respect.  You're not ignoring us and you're not assuming you know what we're saying.  So, I really liked that scene, too.

One of my favorite positive aspects from the movie was the allusion to the title.  At first, I was put off by it.  I read it as some dehumanizing take on what disability or terminal illness does to a person - making them less themselves.  But I was happy to be wrong.  I loved the scene where the reason for the title was made clear, when Bec (the new caregiver) is interpreting for Kate, and begins taking her own liberties with what she does or does not interpret.  Kate interjects and says, "You're not you.  You're me," which really emphasizes the importance of interpreting correctly, as well as the importance of not speaking for a disabled person, but letting us speak for ourselves.  That scene really gave a needed window into what Kate was thinking and feeling and what the process of living with ALS was like for her.  The final aspect I really enjoyed (while not disability related) was the strong female friendship between Kate and Bec (and also Kate and Marilyn) that was displayed on screen.  It's rare that we see those in media of any sort, and I appreciated seeing those aspects.

As far as the negative aspects, there were many, unfortunately.  First and foremost, the character of Kate is portrayed by an able-bodied actor (Hilary Swank).  The movie was also, clearly from the perspective of Bec, the new caregiver, and not Kate herself.  This has the instant effect of "othering" Kate.  There were a couple of moments when Bec pushed Kate's chair when Kate clearly said not to, and in those moments, I believe it's shown to be a good thing.  As if, in these moments, Bec knows better than Kate what she needs.  In fact, Kate's word should have been honored.  Even the moment of positively framing the adaptive equipment comes from Bec driving the electric wheelchair (which is actually super hard to do, I've heard) seamlessly up to Kate and telling her how good it is for her.

The movie perpetuated some really damaging beliefs/storylines/stereotypes.  The scene on the stairs was horrifying, as was the reveal that it was not accidental.  Kate was so wracked with guilt over what her disability was doing to her husband that she felt taking a header down the stairs was a suitable answer?  We don't need anymore "I'd rather be dead than be disabled"/"No one can love me because I'm disabled" nonsense going on.  It is so damaging.  Yes, there are some people who believe this, even some disabled people.  However, when these aspects are the only ones you see, you think that is the entire picture.  Really, it's one small piece.  There are disabled people (myself included) who are super glad to be alive, who know we are worthy of love and respect.  The movie did show a good portion of Kate's day to day life, but it was all leading up to the moment of her death.  I want to see a movie about disabled people living that does not end with them dying to teach an able bodied person a lesson.

I don't count the death itself as a negative, but the way it's framed almost feels to me like another version of the "better off" stereotype, wherein Kate's legacy is shown to have more value than her actual life does.  And again, it was all depicted as a positive thing because we are seeing it through Bec's lens.  Kate's death gives Bec the push she needs to write music and sing on stage, which is exactly what inspiration porn is.  We, disabled people, are shown to only have a surface value - not as our own human selves, but as how we effect and/or "inspire" able bodied people  It's a way to objectify us, and reduce us.  Our lives do not have value because seeing us makes you feel better about yourself.  Our lives have value because they're our lives.

The book (which the movie is based on) does seem more comprehensive than the movie, and the author, Michelle Wildgen, seems to have a basic grasp of some of the harmful beliefs surrounding disabled people and the way we're portrayed in media, which is encouraging.  I haven't read the book (beyond skimming the first chapter online) so this commentary is about the movie only, which I did see in its entirety.

***

Don't forget to connect on Facebook / Twitter / Instagram