Thursday, April 30, 2015

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

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:

Thursday, April 23, 2015

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

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."

Movie Review: You're Not You

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.

Wednesday, April 22, 2015

Favorite Posts

September, 2017:

Parenting Kids with Disabilities:  This was my summer blog series for June - September, 2017.  It addresses various aspects of parenting kids with disabilities that may not be addressed elsewhere.  You will find all the posts linked at the top.

September, 2016:

Let's Talk About Faith:  Talking about faith is always tricky.  The risk of offending believers is high, even if we, ourselves have once been on the inside.  Inside the church walls.  Close to the priests and pastors.  To God’s people.  I think, though, it’s important to take the risk.  To talk about the way faith shaped me as a woman with CP.  Ways it helped, and ways it hurt.

June, 2016:

Let's Talk About In The Land of Canaan:   ...There is danger in doing a project like this when your feelings and attitudes for our community have yet to evolve.  While done with the best of intentions, I have found this documentary to be objectifying, exploitative and ableist, and I cannot in good conscience, have watched something like this, that so harms my community, and not speak up about it.

May, 2016:

Let's Talk About The Time I Dropped My Mom's Mother's Day Flowers on The Ground:  "Yeah, I offered to carry them for her, but she said no.  I KNEW she would drop them!"

Let's Talk About The Gap Between Disabled Adults and Parents of Kids with Disabilities:  "You guys are the first generation raised out of institutions.  Before that, parents always spoke for you.  We had to.  There was no other choice.  Now, though, you've grown up, and you speak for yourselves.  You're the first to ever do that.  I don't think we, as parents, are used to it yet."

April, 2016:

Let's Talk About The Effects of Consistent Patronization:  We are often told in society that we must not overindulge disabled children, lest they grow up feeling entitled to everything, making them spoiled brats.  Little is said, though, about the other end of that spectrum. 

How My Great Grandpa's Innovation Made It Possible for Me to Ride a Bike:  Grandma and Grandpa brought the new Big Wheel home, and Grandpa went down to his shop...

How a Parent's Response to Ableism Can Impact Their Child:  Mom continued recounting the moment: "I wanted to take him by the collar and shake him.  I wanted to tell him, 'Of course she can talk!'"

March, 2016:

Cerebral Palsy Awareness Month Interview #7:  The most important thing I have learned about myself is that it is okay to have Cerebral Palsy and it is okay to be disabled.  I grew up with a lot of internalized ableism, and it honestly took me until my 30's to realize that there is nothing inherently bad about being disabled.  It's a part of my identity that I can take pride in.

February, 2016:

Let's Talk About Typical Siblings: As a kid, my thought about my sisters were that they are just as strong as everyone else, and they are a lot smarter than anyone else - they just have some trouble walking. That's how I would explain it to people when I was younger.  

Let's Talk About Place Blindness and CP:  In layman's terms, place blindness means that I can navigate place to place only if there are significant landmarks guiding me.

January, 2016:

Let's Talk About Falling:  Though I can't remember it, I'm positive I had to be taught how to fall correctly.  I know it didn't come naturally to me.  Spasticity means that I tend to go down hard and fast, and it never felt possible to go against my body's natural momentum and attempt to fall forward.  Usually, instinct is to break your fall by putting your hands out, but mine were usually full - Canadian crutches meant I couldn't often break my own falls.

Let's Talk About Safety Issues and Disability: It was December, 2009 when the fire alarm went off in our building in the middle of the night.  Ripped from sleep, we got up and made our way to the apartment door which we felt to be sure it wasn't hot.  We didn't smell smoke, so we ventured to open the door.  In the hall, another smell greeted us.  Not thick smoke, but the scent of something burning, maybe? 

Grey's Anatomy: Disability Representation Series: 10x15 - Throwing It All Away:  This baby isn't out there contributing to society.  He's not going to the office of baby 9-month-olds from 9 to 5 and bringing home a paycheck.  That does not mean he doesn't need to be loved and held and accepted. 

December, 2015:

In The Time Machine:  At this point in history, the internet didn't exist.  We knew a maximum of 60 kids and 2 teachers would see these videos (all of whom either my sister or I knew) which we were fine with.  Now, I  want to share them here, with the knowledge that there are little kids out there who have CP and have gone through difficult surgeries and recoveries.

Like Looking in a Mirror: One of the coolest things I have found about having CP is that it offers an automatic connection to a community - even down to our physical features.  Look at two people with CP and you will see similarities. 

September, 2015:

What You Need to Know About Blogging About Your Disabled Kids:  Ask yourself, does this post, or this blog, respect my child and their dignity?  Does it respect my child's community?

3 Things Disabled People Aren't Required to Provide the Nondisabled Public:  Many times, we, as disabled people are looked upon to educate the people around us (at their demand.)  The reality is, we do not exist to educate the nondisabled population. 

What You Need to Know About Pushing Someone's Wheelchair Without Permission:  When I was nineteen, I traveled out of the country for the first time without my parents.  Once the plane landed, a man retrieved my wheelchair from where it had been stored during the flight.  I got in while he held it steady.  I buckled myself in, and before I had time to think or react, I felt myself being pushed - not by my sister or friends (who I had traveled with) but by a strange man I had never met. 

August, 2015:

The Thing I Regret Most So Far:  Just because I can reframe negative things in a more positive context does not take away their impact and it doesn't mean there are not aspects of my life and behavior that I do, deeply regret.  And though I don't often share about this, I feel it's important.  Because I'm sure I'm not the only person with CP who has also struggled in this way, and I want anyone out there who is struggling as I have to know you are not alone.

The Person I've Had the Most Intense Romantic Feelings For:  Some of you may be wondering why I've been posting these anecdotal stories that don't necessarily have to do directly with my CP.  It's because I think it's important to know that disabled people are complex and unique.  We all have our own stories.  And  we, as human beings, share similar feelings and experiences with disabled and nondisabled people alike.  

May, 2015:

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

Self-Identifying 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.

March, 2015:

CP and Christianity:  One thing that very much attracted me to this church was the freedom in it.  People were encouraged, not only to sing, during the worship time, but to move around.  People jumped up and down, or danced by themselves.  Being quite short, and having the lyrics of the songs projected on a screen at the front of the sanctuary, I was often drawn there out of necessity, so I could see the words without being blocked by tall people.  But that's when I began to be approached by fellow congregants after the service, who told me how inspired they were to see me during praise and worship.  Now, I wouldn't call what I was doing dancing, but I definitely moved and it was this that caught people's attention.  They commented on how inspiring it was to see me dancing or standing, or anything, really.  Anything that had to do with my physical body, and what it could do.

Letter to My Younger Self:  Listen, I know your biggest dream right now is to leave every single vestige of CP so far in the dust that you never have to think about it again.  I know you still think if you work hard enough, you'll be able to walk without crutches.  I know you think that will solve everything. That it will make you lovable.  Let me tell you something, though (and I know you'll roll your eyes, but hear me out.  I'm you, so I know you pretty well.)

February, 2015:

Thoughts on the ADA:  It would be impossible to account for every single microaggression and example of ableism I have experienced, but let me give a recent example.  Last month, I went to the bank to deal with some super sketchy looking stuff happening with my bank account.  My youngest brother not only drove me to the bank, but came in with me because he "just wanted to see how they handled this."  I got a very competent teller, who set straight to work, figuring out what was going on with my account.  Before we left, though, the teller had to call his boss over to address something or another.  Instead of looking at me, this man looked at my 18-year-old brother, and talked to him the whole time.  Even though I was sitting right there looking at him, and it was my bank account, and I was answering all his questions while my brother listened politely, but never commented. 

CP and FriendshipsI remember one friend, in particular, who I started getting to know around five years ago.  They were the first person I remember making a conscious choice not to disclose my disability to right away.  Three months later, when I shared a piece of writing where I mentioned it, they responded simply, "You never told me about the Cerebral P."  That was it. 

January, 2015:

Insight on My Trach:  I still have the scar - a couple inches long in the center of my neck - and shaped like a smile. It's an identifying characteristic for two little girls who dressed and looked so alike that in certain pictures even we can't tell each other apart.

Poem: What Happened When I Spoke Out About Damaging Disability Representation in the Media:  I hear, / "It doesn't matter / That we are the heroes. / That every single storyline that / A character like you possesses / Is steeped in condescention / And stereotypes. / That you always need helping / And saving, / Because someone like you could never / Help / Or save."

Tonia's Big List of Resources for Learning About Disabilities:  A comprehensive list of media and social media accounts of disabled people, updated as I find more books, movies, etc, that feature disabled people.

July, 2014:

Startle Reflex in CP: Please Don't Scare Us on Purpose:  The closest description I could find was of the fight-or-flight response. (It’s what most people might experience during an actual threat to their safety and well-being. Being immediately threatened with physical violence, for example.) This is a response people have no control over. It a physiological response to a perceived harmful event, attack or threat to our survival. It starts in our brain, and causes automatic reactions that come with the startle reflex you can see.

PTSD Recovery Resource: Trauma Box:  I still struggle from time to time. The box (as anything) is not a cure-all, but it’s definitely been helpful. I’m not a professional of any sort. I just thought making this post and putting it out there might help someone else. Remember that your number one priority should be your own health and safety. It’s okay if you’re not ready to deal with your trauma. It took me years to face mine.

June, 2014:

Advice: Dos and Don'ts for Interacting with Someone in a Wheelchair:  Always presume competence. Whether our wheelchair-use coincides with an intellectual disability or not, no one likes to be spoken to in a condescending manner. When speaking to someone in a wheelchair (because you may not know if this person has CP or not) always talk to us as you would anyone else. It’s likely we can understand you perfectly.

March, 2014:

Dealing with Ableism as a Child:  My classroom teacher in fourth grade (the same year the ADA was passed) was a likely well-meaning woman, near retirement age. The minute I joined the class, I was known as “the smiley new student with Cerebral Palsy.”

January, 2014:

POV and Accessibility in Everyday LifeAfter college, I had a job at a summer camp for three summers. Though they had an accessible stall in each cabin, their showers were entirely impossible to use. Just a wide open space enclosed by tiles. There was no way to safely use it. So I had to improvise and wash up at the sink during my break (including my hair.) They did install a bar, but the placement of it wasn’t what I needed, so the issue never really got resolved. The shower chair I had then didn’t have a back (was more a bench) and would not have been sufficient for the situation. Even if I had a shower chair that suited my needs, I would have still needed to navigate out of the wet shower somehow to and then find somewhere to sit, dry off and get dressed.

Friday, April 17, 2015

About Me

I was born in 1981, the second-born in a set of identical twins.  We were born nine weeks premature at two pounds a piece.  I had heart surgery at three days old, as well as a feeding tube.  When I was three months old, my family took me home, but I was rushed back to the hospital when my airway started to close.  I had another surgery to put in my trach, which helped me breathe.  I was finally released from the hospital at nine months old.

At eighteen months old, I was diagnosed with Cerebral Palsy, which, for me, was the result of oxygen deprivation before or during birth,  My CP is called spastic diplegia.  It primarily affects my legs, making the muscles in them tight.  It also affects my balance, posture and coordination.  Growing up, I achieved most of the milestones other kids did, but I achieved them at a slower rate, and had five or six more surgeries by the time I was eleven years old.

I used several different mobility aids.  When I first started walking, through about age five or six, I used a reverse posture walker:

And at that point, I learned how to started learning how to use crutches.  It was scary, and I was often afraid of falling, but I always had people spotting me in those early days, to make sure I didn't fall.  (Thanks, Grandma!)

Despite being a really outgoing kid, I had a lot of internalized ableism.  I grew up thinking that being able meant you were also "better" and so, being disabled made me "worse."  I often asked for my picture to be taken like this because that's how everyone else had theirs taken, and I wanted nothing more than to fit in, even if it meant clutching an unsteady object nearby and being terrified I'd fall.

In fact, I have very few full body pictures, where my walker, crutches or wheelchair were visible.  Lots of them are close up, portrait style.  By the time I was ten or eleven years old, I was dealing with anxiety, depression and self harm (which, I have read, is common among people who have experienced multiple surgeries, and therefore, feel a lack of control over their own body.)  This picture was a rare exception, where both my crutches and my wheelchair were pictured, about six months after my most major surgery, with one more on the horizon.

I hadn't realized just how few pictures of myself also pictured what I used to get around, until I went looking for them for this post.  Needless to say, it's time for that to change:

This is me and my wheelchair, Greenie.  I use Greenie a lot of the time, because I live in accessible housing, and it's a lot easier to get places and also have my hands free to carry things.  Greenie is super reliable and very comfortable.  His special talents include killing bugs.  He also gives me a ridiculously smooth ride, a lovely seat cushion and supportive back rest.  His best feature is his candy apple green color.

And this is me with my crutches.  I use them anywhere I can't take Greenie (anywhere with stairs, that is otherwise inaccessible.)  Their best feature is their slip proof tips, which I find and buy on Amazon every year or so.

It has taken many years for me to come to terms with my status as a disabled person.  I still rarely wear shorts, because I don't like my surgical scars being visible (though the one from my trach usually is.)  And I rarely if ever discuss my history with anxiety, depression and self harm.  These days, my anxiety is mostly under control, depression thankfully has not been an issue since college, and I am twelve years strong in recovery from self harm.

This is me, and I am not ashamed:

Friday, April 10, 2015

Question: How Do I Choose a Mobility Aid for My Child When Professional Opinion is Split Down the Middle?

This is a great question, and a difficult one!  There is no simple answer, but I will do my best.  (Also, it's worth noting that I am not a professional of any sort myself.)

I can understand both sides of professional opinion in this case.  Wanting your child to strive for their highest potential is good.  So is giving them the easiest access to life.  My parents really did not push me (at least in the area of mobility aids.)  There were times when my dad pushed me to write faster, so as not to need extra time to take my PSATs.  In that instance, his pushing was a good thing.  It turned out that I didn't need the extra time and could complete the test without it.  There have been other times, though, where I have been pushed to complete things that were physically impossible for me.  In that case, pushing is very damaging for a child's self-esteem.

In the end, given your child's very young age, and the fact that they cannot advocate for themselves and what they would benefit the most from, it will be up to you (and your partner, if you are co-parenting.)  I absolutely respect doctors and therapists and their opinions, and I am in no way asking you to disregard them.  However, a doctor might see your child once every six months.  A therapist might see them for a couple hours a week.  You see your child every day.

So, use that.  Observe your child and how they move.  Consider questions like, is your child able to use their arms?  Are their arms easy for them to move or are they affected by high or low muscle tone?  Are they able to sit up with a minimum of support or do they require more?  If your child's arms are not affected by high or low tone, and if they are able to sit and balance reasonably well given back support, I (in my completely unprofessional opinion) don't feel like it would be unreasonable to pursue a manual chair.  It would give your child the opportunity to be more physically active and build strength.  However, if your child's arms are difficult for them to move, and impacted by spasticity or flaccidity, and if they require more support than a seat belt and a back rest to remain upright, perhaps, consider an electric wheelchair.  Also, is your home suited better for one chair over the other?  Do you have a vehicle that can accommodate an electric wheelchair if you choose to go that route?  All just questions to consider (and maybe you have thought these through already.)

I just went through the process of getting a new chair myself, and I was able to use a chair of the same make/model that I was considering for a period of a week or two, to see if it suited me.  That would definitely be something to ask as you move on in the process of getting your child a first wheelchair.  It would give them the opportunity to get a feel for it, and you, to observe which chair works for them.  If possible, ask about an option like this at any sort of evaluation your child has.

In the end, it really is up to you.  You know your child.  You're around them and likely have a very good sense of what they can do and/or have the potential to do with time.  It may take your child more time to learn to navigate either chair, but be patient.  If you have any other questions, please let me know!  I hope this helps!

Monday, April 6, 2015

Book Review: Why Is Dad So Mad?

It's rare that I go out of my way to buy a children's book (being that I have no children and that those I do have contact with are growing up super fast.)  But when I saw this book recently, ordering it was a priority.

Written by Seth Kastle, Why Is Dad So Mad? is (as the subtitle clarifies) a book about PTSD and military families.  It is simple, straightforward, and very clear, so that even the youngest children of service members with PTSD can understand it.  Most importantly, it's written by a retired military veteran with PTSD.  He wrote the book to try to explain the changes in him to his young daughters.

Definitely recommend this, and I'm about to add it to Tonia's Big List of Resources for Learning About Disabilities.