Sunday, May 31, 2015

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

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

Monday, May 25, 2015

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

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 nine months.

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

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

Almost 2 weeks old, holding Mom's hand.
Several months later, and I'm bigger and got my trach put in.  Yay, being able to breathe reliably!

My sis (left) was home by the time we were 5 months old.   I was still hospitalized.  When she came to visit, we sometimes fell asleep holding hands.
Having a bath, around 6 months.
Around 8 months here, just a little longer before I (left) would get to go home.  Hard to say bye to sissy.

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.  

Tuesday, May 19, 2015

Making a Mountain Out of a Molehill

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.

Wednesday, May 6, 2015

Self-Identifying as Disabled

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!