Monday, May 30, 2016

Let's Talk About Stereotypical Portrayals of Disability on TV


Hey T, Have you seen this season of Bones? It has been interesting and I wondered your thoughts about it.

I received this message from a friend recently along with a corresponding article detailing secondary character, Jack Hodgins’ paralysis in the show’s winter finale.  I was put off by many things in the article alone, and even though I was fairly sure about the kind of portrayal I would see, I checked out five episodes (11x12-11x16) anyway.

wheelchair-567812_960_720.jpg
[Image is: a wheelchair at the top of steep steps outdoors.]

PORTRAYAL ISSUES:

Disability as a Plot-Device:  Hodgins’ paralysis (as the majority of characters’ disabilities in media) exists exclusively as a ‘new challenge’ both for the character, and the actor who plays him.  In this sense, the lives of actual disabled people are viewed as an exercise, not as a reality.  Bones is apparently going to end after a 12-episode season 12.  Season 11 is already half done.  Chances of any depth or reality to this aspect is slim in my opinion.  This is dangerous and problematic because it objectifies disabled people.  Our lives as disabled people are viewed one-dimensionally, as a sad nightmare from which the character cannot awake, and an unimaginable challenge to grieve and cope with.  

Representation:  While absolutely not specific to this show, the issue of casting an able-bodied actor in the role of newly-paralyzed character, Hodgins is an issue.   We not only must contend with the inherent stereotypes coming from the able-bodied writers and directors, but the those of the actor (who uses words like “chair-bound” to describe his character.)

In order to get into character, actor T.J. Thyne, stays in the character’s wheelchair all the time on set, even when it is inconvenient for him (as stated in the linked article above.)  This is viewed as admirable and as proof of just how deep Thyne’s commitment to this new storyline is.  When I read that he was looking to portray disability accurately, I hoped he may discuss speaking with actual spinal cord injury survivors, but no, he chooses to remain in the chair at all times.  

I saw an example of this during a commercial during the last episode I watched via OnDemand.  The actors were a part of some good deed, and as it was on set, Thyne was in the wheelchair, though he clearly was not in-character.  I can’t quite specify just how seeing this resonated as “wrong” to me, but it did.  Perhaps because it takes my (and many people’s) legitimate identities as disabled people and minimizes them to a prolonged instance of disability simulation, which does nothing but promote pity and stereotypes.

The biggest issue I find with able-bodied actors portraying disabled characters is that it always comes off feeling like a mockery to me.  The reason for this is, there are specific things we do as disabled people (and more specifically, things that people who are paralyzed) do, that able-bodied actors do not.  

If you want a great example, watch the way Thyne pushes his wheelchair as Hodgins.  Now, watch Ali Stroker push her chair.  Thyne pushes the chair the way able-bodied people walk.  Using a wheelchair is not the same as walking.  We move differently. I have very rarely seen a person in a wheelchair “pace” for example, but I have seen able-bodied actors portraying wheelchair users do this. I very rarely see wheelchair users in motion who stop just to gesture while the speak and then keep going.  More often, we will use our heads to gesture, or park completely before engaging in a conversation that requires our hands.

It also needs to be said: this singular lens through which disability is viewed on television is limiting at best.  Paralysis is not the only physical disability that exists.  Cerebral Palsy, Osteogenesis Imperfecta and Muscular Dystrophy are just three examples of others that exist from birth.  Straight, white men are not the only people who are disabled.  Women are disabled, too.  So are people of color.  So are LGBTQIA+ people.  Many times, these minority identities crossover and a black woman is disabled, for example. But we rarely, if ever, see these representations on television.  I understand that it is the closest able-bodied people can likely come to envisioning themselves disabled, but it does those of us who have grown up disabled few favors.

This narrative, in particular, feeds the erroneous assumption that disability is the product of something tragic and that our lives post-disability are equally tragic.  

Also, in one horrifying moment, Angela confides in a co-worker that she is “trying to think of ways to kill my jerk of a husband.” It is played for laughs.  There seems to be a lack of knowledge on all parties’ parts that caregivers murdering disabled people in their charge is a frightening reality that we in the disabled community must live with.  (As well as living with the knowledge that those responsible are rarely if ever charged with a crime.)

If there were a disabled person in the writer’s room, or a disabled consultant present, “jokes” like these would never slip past us, and we would know just how chilling it is to hear a wife say those words about her newly-disabled husband.

Accessibility as a Non-Issue:  Perhaps accessibility was touched on more in previous episodes but in the five I saw, accessibility was basically a non-issue for Hodgins.  There is one moment where he meets his friends at a local diner and someone trips over his chair.  They briefly talk about going somewhere else but Hodgins insists that they keep coming to the same place because it’s tradition.

He goes back to work seamlessly.  Hodgins seems to be able to reach and access absolutely everything he could ever need without a problem.  He is able to continue doing his job with little to no accommodations, from what I could see.

Most glaring, for me, was seeing Hodgins navigate with no trouble around his own home.  Especially as his injury (and thus, the chair) is new, I imagined I might see a bit of struggle on his part over carpet, around furniture not positioned with a wheelchair in mind, and navigating doorways that are just too narrow.  

This may seem like I am being nit-picky but accessibility as a wheelchair user is not a given, and just as it is maddening to see fictional shows flagrantly disregard the existence of the ADA and insist that characters in wheelchairs are not provided accessible transportation, it’s equally unbelievable to see a newly paralyzed character encounter no difficulties navigating through his workplace, his home or anywhere else.

STEREOTYPES:

Becoming Disabled Makes Character a Jerk:  I have not seen Hodgins prior to his injury.  I’ve only had the word of fellow characters telling me he has changed to let me know he has not always been an absolute jerk.  He’s very dismissive to his co-workers, and specifically to his wife, whom he also works with.  He ignores her or makes mean comments.

Disabled Character Makes Awful Dark Wheelchair Jokes:  This may seem like a small issue but the way we speak about ourselves as wheelchair users is so important.  I have rarely if ever heard someone in a wheelchair balk at a legitimate comment from a co-worker/friend about out-of-line behavior with a retort asking that friend “what they call themselves for putting down someone in a wheelchair?”  

The reality is, we receive so much pity as it is that the idea of asking for more just seems absurd.  But Hodgins does this, drawing weird, dark attention with bad jokes about his legs not working, and accusing people of expecting him to come to them when he is in a wheelchair.  

Disabled Character Wants to Be Healed:  I understand (as best as someone who has been disabled from birth can) that a new injury later in life can be a huge adjustment.  It can take time.  But again, when the only portrayals we see on television are that of disabled people longing for a cure for their disability, it feeds the notion that we all lead miserable lives and none of us are happy.


Able-Bodied Heroes and SuperSpouse:  This show is full of able-bodied heroes!  Pretty much everyone other than Hodgins thinks they know better than him about what he needs or what should be done about this or that personal issue.  These five episodes are full of Hodgins getting put in his place by the able-bodied characters about how wrong he is to be coping as he is.

SuperSpouse is a variation of SuperParent, Angela, Hodgins’ wife is often the focus of storylines that should focus on Hodgins.  She is sad to be treated so badly (legitimate) however, her long-suffering “it’s just the way he talks to me now.” and “this is him on a good day,” just feed the notion that Hodgins is the recipient of so much love and sacrifice on Angela’s behalf.  He should be grateful and he is not.

In a totally strange example that is somehow both of these themes, Hodgins bonds with some rats, and is all about taking them home and not disposing of them now that they no longer have use in their current investigation.  Hodgins is also very excited about a possible surgery that might restore his ability to walk.

Angela talks to Hodgins at the end of the episode (very condescendingly) about how he seems to value the lives of those rats quite a bit.  (Sidenote: I don’t even know what to say to the idea that Hodgins is identifying with rats…)  Angela tells Hodgins that these rats undergo all kinds of tests that kill them because they are super risky, and isn’t he more valuable than the rats.  Hodgins agrees that he is and that he will be on the lookout for a different surgery which poses less risk to him.  Then they take the rats home.  Disgusting.

Disabled People as Props and Gawking Without Talking:  These two inspiration porn themes were huge in the episodes I watched.  Hodgins is often talked about by Angela outside of his presence.  One instance includes Angela discussing with a friend at work that he can still be intimate because everything still works.

While it is definitely common that women (especially those who are friends) discuss such things, adding disability into the mix creates a new layer that able-bodied people often don’t consider.  As disabled people, we are often objectified by the nondisabled public.  They often feel entitled to very personal information about us, including our diagnoses, how we use the bathroom, and how we have sex.  Angela discussing what Hodgins can still do in bed crosses that line, in my opinion.  If Hodgins were present and at ease with the topic of conversation, it would be another matter.  But I am fairly certain that this conversation would not have happened in his earshot.

In another episode, Hodgins is trying to make up for his previously mean behavior by severely overcompensating and buying Angela ridiculously expensive jewelry.  We see she is uncomfortable at the gifts’ cost, but Hodgins insists she have them.

At the end of the same episode, all of the Bones co-workers are out to eat, and they are toasting that Hodgins is out with them again.  At this, Angela elaborates that Hodgins is out with them because she has given the jewelry he gave her to a fellow female co-worker, and in order to “get it back” he has to go out with Angela three more times that month.

Hodgins is not angry at the fact that his wife gave her jewelry (from him!) to another woman.  He is not humiliated that she is treating him like a child by removing what he obviously deems valuable until he does what she wants.  Instead, Hodgins smiles at Angela and holds her hand without saying a word, as if her actions are the most romantic thing he has ever heard.

CLOSING THOUGHTS:

While I used the show Bones for specific examples, I find TV regularly misrepresents disability in these types of ways.  (Past examples include Glee and the remake of Ironside.)

I would love to see that change, especially as I know of so many Deaf and disabled actors who would love to represent characters like themselves in non-stereotypical ways.  As an audience member, I would love to see authentic representation, as well.

It’s my hope that, over time, this continues to change.

***

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Monday, May 23, 2016

Let's Talk About The Time I Dropped My Mom's Mother's Day Flowers on The Ground

THE PLAN:  

It was the day before Mother's Day, and because we are awesome daughters who always plan ahead (not!) my sis suggested before she went to work that I might want to go to the greenhouse and pick up some flowers.  This had been our plan.  Who doesn't love flowers?  (Our mom LOVES them.)

"What kind should I get?"

"Whatever you think are pretty, she'll think are pretty."

Okay, then.

THE BEST ONES:

About 9:30 that morning I headed out, hoping the greenhouse was open.

I got there in a few minutes' time, with only a few missteps (misrolls? - like "the giant sign SAYS the greenhouse is open but how do I get in???")

It was pretty busy.  No doubt everyone else had the same idea.  (We love our moms, but we suck at pre-planning.)  So I perused the flowers, taking off my sunglasses to really appreciate all the colors and determine which were the very best.  I spied a pot of I-had-no-idea-what but gosh they were gorgeous.  I went by them, with the intent of checking out if there were others I liked better, but an irrational sense of ownership washed over me.  I thought, What if someone else takes the best ones???  I can't let them take the best ones!

THE LINE: 

So, I tested the weight of the pot, and as it wasn't massive, I set it on my lap and got in line behind a guy with seriously disturbing tattoos.  (His arms were right at my eye level, to be fair, and I'm pretty sure the ink either depicted someone dead or an alien...on each arm.)

It was a long line and the register was down, but it was a nice day, so I just hung out with my flowers, at a standstill when:

"Sweetheart, can I pray for you?"

He came out of nowhere.  Not Tattoo Guy, but older, squatting in front of me.  I recognized this stance from almost a decade in nondenominational charismatic church.  Praying Man was ready to get his prayer on.

I hesitated for a moment, knowing how dangerous it can be to say no.  But I thought of a helpful article I'd read about all the different ways to say no, when you don't feel safe.  I settled for a pleasant, "Ummm...No, thank you!" with a smile.

"Okay!" said Praying Man.  Not sounding angry, but panicked, like maybe I had The Plague.  In any case, he disappeared like a mirage.

The ladies around me in line were shocked.

("Did he just ask to PRAY for you?  UNBELIEVABLE!")

("You've got to be KIDDING ME!)

So I arrived at the register, paid, and then asked if someone could please stow the pot of flowers in the bag on the back of my chair.  They tried.  Then they told me, "I don't think I'd trust this..."  As they had the better angle, I trusted them.

Off came the fanny pack, which went into the bag.  Now, I had enough lap space to carry the flowers home.  It was smooth rolling across the parking lot, until I saw that the curb cut to the sidewalk was on the other side of a giant speed bump.  I could just imagine these beautiful flowers biting the dust, so I waved down a passerby and asked if she wouldn't mind giving me a hand over the bump.  She did.

THE ROLL HOME:

I was on the sidewalk and on the lookout for the massive crack that stopped me cold on the way there.  I spotted it and rolled over super carefully.

Freedom!

I noticed a woman out of the corner of my eye reprimanding her young daughter.  When she saw me, her tone changed.  For me it was all pity voice, all the time.

"Do you need help?" she asked, like she'd ask a toddler if they got an owie.

"No, thanks, I got it!" I answered cheerfully.

I was almost to my final landmark, which meant home was nearly in sight when I was jarred forward and had to grab the wheels to make sure I didn't tip over.

Massive sidewalk crack.

Mom's beautiful flowers upside down on the ground.

A new lady came running to help.  She picked up the pot and handed it to me.  Only one yellow flower and a little dirt remained behind but the flowers in the pot were flatter now.

"Do you want me to carry these for you a little way?  I'm going into the store up here."

"Sure, that would be great, thank you so much!"

Just then, a car pulled up.  The voice inside said, "I can drive these over for her."

New Lady eyed me, to see if I was on board.  Asked the woman in the car questions.  She was suspicious and I appreciated it.  I appreciated that she didn't just pass off my flowers to this random person and go on her way.

I agreed, though, to let the woman in the car drive the flowers home for me.  I'd already dropped them once.  It was a miracle they survived.  I knew I'd be silly to pass up help at this point.

"Yeah, that's fine," I told New Lady and she passed the flowers off.  "Thank you so much," I added, to the woman in the car.

But the woman in the car wasn't talking to me.  She was talking to New Lady.  "Yeah, I offered to carry them for her, but she said no.  I KNEW she would drop them!"

Oh crap.  It's Pity Voice.  I just agreed to give Mom's flowers a ride home with PITY VOICE.

New Lady, responded, "Yeah, I just picked them up off the ground..."

"Ohhh.  Thank you for picking them up for her.  That was SO NICE of you!"

So, we were off.  She drove ahead and got out of the car, meeting me at the back door.

Every single thing she said to me was in that tone of voice:

"You're getting your exercise today!"

"Do you need help up this hill?  I don't want to help you if you want to do it yourself..."

"My daughter likes to help out the kids who are in wheelchairs at school, so if she touches your wheelchair, don't worry about it..."

She brought the flowers all the way in, set them on the table and advised me that a little water would perk them right up.

"Thank you so much," I said, and hated myself a little.

When she said "You're welcome," it sounded like she felt like I had the worst life ever, AND that I was some infant who didn't know how to carry flowers home.

I don't think I'd ever been so glad to close and lock my door.

THE MOM SEAL OF APPROVAL:

Sunday morning, I got a text:

"Thanks so much for the flowers and candy.  So nice!"

I apologized for the state of the flowers, but Mom insisted:

"They are gorgeous and will fill back in in no time!"

Well...I can't really argue with that.

[Image is: Mom's pansies, only a little worse for wear.]


***

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Monday, May 16, 2016

Let's Talk About The Evolution of Dreams

The first nightmare I remember ever having was at nine years old.

I was being chased through the streets of a tiny Smurf village with mushroom houses by Ursula the sea witch.  It was dark in the dream, all the Smurf streets were abandoned and the neighborhood was creepily lit.  Even though she was out of water, Ursula was hot on my heels.  I was running as fast as I could with my walker, and Ursula was closing in on me, her eight scary tentacles reaching for me...and then I woke up.


I remember the first time I watched and fell in love with The Little Mermaid.  I was eight years old, and saw it in theaters.  I always strongly identified with Ariel, and Part of Your World was a favorite song of mine for years afterward.  Feeling out of place in my everyday life and longing for legs that worked?  It was my entire young life.

So it wasn't a huge shock that a year after that, I was dreaming of being chased by the movie's villain.  Only now, do I realize the significance of myself using adaptive equipment in the dream, and still facing the inevitability of being overpowered by a giant sea witch, who was way more powerful (even on dry land) than I was.  Only now, does it hit me: Ursula's claim to fame was stealing people's voices.  And maybe, deep down, that was my greatest fear.

[Image is: Me W-sitting on my sister's unmade bed with messy hair.  I'm in a pink sweatsuit and I am smiling.]


--

Throughout my life, most of my dreams have reflected the intense vulnerability I have felt around being disabled.  Usually, my adaptive equipment was not there at all.  I was not specifically disabled in my dreams, but I was always in danger.  I always needed to be saved.

By the time I was eighteen, I dreamed of being able-bodied, running after an able-bodied friend.  I remember feeling so happy, so free.  But in the majority of my dreams, I needed saving, and specifically, I needed saving by able-bodied people.  My best friend at the time.  My parents.  JJ from Criminal Minds.  Whoever...as long as they were able-bodied.

--

Things started to change around the time I started blogging two summers ago.  I started dreaming of being the damsel in distress less and less.  Then, there was the time when I dreamed about being rescued by Ali Stroker.  It was a turning point, in that, it was the first time I dreamed about a disabled person in an empowering way.  I still obviously was feeling vulnerable, but was beginning to feel safe in the company of other disabled people.

Slowly, over time, my wheelchair has made appearances in my dreams.  Six months ago, I dreamed I was flying around my neighborhood with SuperGirl and Captain America, keeping it safe from evil.  And these days, for the first time, I dream about hanging out with other disabled people.  We join forces.  We are equals.  I feel powerful.

--

I don't think it's a coincidence that as I've grown more comfortable and confident in my identity as a disabled person, my dreams have also changed.  Blogging, and connecting to other disabled people has empowered me and changed my inner voice.  It has changed the way I feel about myself.  I am more powerful and present in my body and feel more comfortable speaking up for myself.

And I want to thank each and every one of you for supporting me, and reading along.  It means the world to know that I am part of yours.

***

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Monday, May 9, 2016

Let's Talk About Accommodation-Policing

"That person doesn't need that scooter!  I saw them walking into the store!"

You've heard this before, I guarantee it.  Right?  You're at work, or you're out and about, and someone (usually able-bodied, usually well-meaning) makes a comment like this.  It's for the good of disabled people everywhere, they reason, their super hero cape hidden away under their hoodie.  Sometimes, they even have a disabled family member.

This topic came up a week or two ago, when an acquaintance asked my advice on what she should tell a friend who previously used her mother's accessible parking pass to park closer to school and thought it was no big deal.  Now, though, she has become passionate about no one ever using an accessible parking spot unless she is sure they are appropriately disabled.

Well, I don't have the magic answer.  But I do have a story to share.

--

[Image is: Me, freshman year in high school, dressed in a red sweatshirt and dark green winter coat.[



It was just a few months into 1996.  (Prince's Party Like It's 1999 remained so futuristic that we partied like it was...you guessed it...1995.  ...That meant dancing with your camp counselor in tie-dyed shirts and having shaving cream fights.  Totally PG.)

It was a Friday.  This particular night, I went with my family to see a movie and then to a restaurant for dinner.  This was apparently a popular idea, because the place was packed.  The entire parking lot was full - my dad had to drive around a bit until an accessible spot opened up - so we could park our giant van.

Once we parked, Dad went inside to inquire about the wait.

Half an hour.

And even the area that invited people to wait to be seated was full.  As two of the four of us kids had a difficult time standing for a long period of time and as Mom was more than seven months pregnant with our youngest brother, Dad made the call that the entire family would wait in the van.  He would run in and check availability every so often.

Dad had barely returned to the van to wait with us, the radio on, when an unfamiliar woman approached his side of the vehicle and asked if he had an accessible parking sticker.  It was prominently displayed on the dashboard of the van.  So, Dad was a bit irked, but indicated the sticker anyway.

My siblings and I were unusually quiet, wanting to know what our parents would do next.  What this woman would do next.

She spoke first.

"Can I see it?"  (Her mother was disabled, and apparently she needed to see that our parking sticker was legitimate.)

Now, my parents had had enough.  Dad said no, she couldn't see it.  Mom was shocked and angry.  She asked, "Do you want to see my daughter's crutches?"

Things reached a critical point when my parents got out of the van (perhaps to get the argument away from the kids) and continued going back and forth with the woman.  She was screaming.  They were shouting back, defending me.  Defending us.  There was swearing.  The woman even made it personal with Mom.

By the time Mom and Dad got back in the van, my sister and I were both crying.  My sister was embarrassed.  I was feeling like I should not have come along on the family outing, because this would have never happened if my parents could have just parked in a regular spot.

We left, and ended up going to a pizza place that was a family favorite, where I tried to collect myself and look like I hadn't just been crying.

As a teenager, I blamed myself.  It never occurred to me that I was not the problem in this situation.  That this woman could have been in the wrong, verbally attacking my family and making us feel so terrible we left and ate somewhere else.

It wasn't my fault.

I just wanted to spend time with my family, and we just wanted to be able to wait together in a way that did not leave half of us exhausted.

--

Now those of you who know me might say, "But you use a wheelchair!  You look disabled!  She had no right to do that to you and your family!"

Well, guess what?  When I was sitting in that van with my family 20 years ago, I didn't look disabled.  My crutches were on the floor of our van, where they always were, out of sight of this lady in the parking lot.  I didn't look disabled then.

And for a few seconds when I get in and out of a vehicle, before you see my adaptive equipment, I might look able-bodied.  But the fact is, I'm not.

I know people abusing their family member's accommodations is an issue, unfortunately.  I know that some use the accessible stall because it fits more people, or allows you to really stretch your legs.  But when people talk about able-bodied people passionately defending the disabled people who "really" need the accommodations in question, I remember being a teenager that night.

I remember feeling degraded.

So, I urge you, before you make a public stink or leave a nasty note about someone using a scooter in a store, or parking in an accessible spot, consider a few things:

THERE IS NO SINGULAR WAY TO LOOK DISABLED:

One-fifth of the population is disabled.  That does not mean that all twenty percent of the population are wheelchair users.  And not all those wheelchair users are paralyzed.    Not everyone who is disabled looks like they need accommodations.  Some walk unaided a short distance, but need help for longer distances.  Some can't carry things and walk at the same time.  Just because it appears that we are able-bodied, doesn't mean we might not deal with chronic pain, breathing, lung or heart issues that make exertion like walking difficult.

And while it does happen that accommodations are abused, there is also the chance that in your zeal, you are ostracizing someone who does need those accommodations.

Realistically, that person using their family member's parking sticker isn't going to stop doing it until they realize it's wrong.

DISABILITY IS COMPLEX:

I read a statistic recently that 85% of people who use wheelchairs are able to stand up.  I'm not sure how accurate this is, but I do know that I am one of those people.

Sometimes when I'm shopping, I have to stand, and clutch at shelving in order to reach an item.  This doesn't mean I need my wheelchair any less.  These days, though, I'm extra aware of how I am perceived in these moments.

Will someone get angry at me for faking a disability even though I'm totally not faking?  (I swear, I'm just short, and in my chair I am shorter...)

My mobility is impacted by things that people on the outside may think are completely random: the weather, my emotional state, or whether I will be around crowds.  Those of you with CP, though, understand that cold weather makes us tense up, and so does being upset or nervous - and nothing makes me more nervous than being in a crowd.  Being tense makes it harder to move freely.  I'm more apt to choose my wheelchair in most instances because of these things.

So while standing for a moment is possible, my wheelchair is also completely necessary.

CHANNEL YOUR PASSION TO HELP US INTO AREAS WHERE WE REALLY COULD USE YOUR SUPPORT:

To do this, listen to the disabled person or people in your life.  What matters to us?  What do we need?  What are we fighting for?  Then ask how you can best support us in reaching that.

There are as many different varieties of disabled people out there as there are nondisabled.  We all have different dreams.  Different hopes.  Different desires.  I don't speak for every disabled person (it's why my blog is called Tonia Says.)  So ask the disabled people in your life what they need your help with.

But be prepared to accept that we may not need your help.

We may be okay just as we are.


***

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Sunday, May 8, 2016

Let's Talk About Perseveration on Grey's Anatomy (Season 12)

Those of you who are watching Grey's Anatomy this season know that there has been a major storyline concerning Callie, Arizona and their daughter, Sofia.  It has culminated in a revised custody arrangement.  

[Image is: a courtroom]

Since the hearing, I have seen fans of the show flummoxed by Callie's behavior, wondering how she could do something so impulsive, so rash, as to risk custody of her daughter in order to follow her girlfriend of one year across the country.

I will admit, I was among them.

What was Callie's deal? I wondered.

Then, I talked to my sis, the day after the most recent episode (12x22, Mama Tried) aired.

"Other characters have done the same thing," she said.  "Meredith took her kids for a year."

"Right, but she didn't take the kids away from Derek."

"No, that's not the point, though.  Grief changes the brain just like trauma does.  So what I'm saying is, can we judge her?"

Up until then, I'd forgotten completely that Callie Torres is a brain injury survivor.  My sis never forgot, because she's one, too.  She was instantly able to put Callie's behavior into context, so that for me, it ceased to be random, confusing or out of character and instead came into stunning clarity.  Specifically, when my sis spoke of Callie's perseveration.

Callie demonstrates what seems to be stuck-in-set perseveration, which is defined as: "[when a TBI survivor]  may persist with a strategy to solve a problem beyond the point at which it ought to be clear that the strategy is not working."  In this case, perseveration means that Callie repeats her plans to move to New York regardless of Arizona's concerns.

As Arizona is Sofia's adoptive mother, and as they currently have joint custody, Arizona sees no other alternative but to take Callie to court in order to revise custody.  Arizona has talked to Callie multiple times, and each time, Callie persists in sharing her plans, to "show [Arizona] she has thought this through."  Callie seems to be unable in these moments to really attend to what Arizona is saying.

Examples of perseveration from 12x20 "Trigger Happy"

Neither my sis nor I had a clear answer about whether anything else could have been done in these moments to "derail the perseveration train," as my sis said.

In this final scene, Arizona intentionally slows her own speech for emphasis.  This seemed (to my untrained eye) to allow Callie some extra time to process and respond to her words.  (My sis noted, though, Callie seems to resent it.)  

  
Final scene from 12x20 "Trigger Happy" starts at 1:26.

My sis pointed out, too, that "you don't know you need someone to slow down, for example, until you know it."  We spoke about how long it took us to be able to talk about her injury and for her to articulate specific things that were related to her brain injury.  My sis is more than 15 years out from hers, and it took nearly all of them for us to be able to have these conversations.  Callie is "a baby" (only 6 years out) according to my sis, and it takes a long time to be able to specify what you need, and to know what is brain-related.

In this case, it seemed like nothing short of the hearing was going to stop Callie in her plan to move with Sofia to New York.  Ironically, her car accident did come up at trial, but was not discussed in much detail.  Neither was Arizona's plane crash, or the subsequent amputation of her leg.

My sister's theory relating to brain injury has contextualized Callie's behavior in a whole new way for me.  And it's my hope that perhaps her insights will provide others with similar understanding.  For me, it brought such a sound explanation out of what I previously perceived was "out of character" behavior.

It makes complete sense, if viewed in this light.

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Wednesday, May 4, 2016

Review: Dance Moms 6x18: One Last Dance

It's not often that I find disability representation on shows where there is usually none (or very little.)  But last night's episode of Dance Moms had quite a bit.  Not so much representation, though, as inspiration porn.  It features four of five common inspiration porn themes Able-Bodied Heroes, People as Props, Gawking Without Talking and the SuperParent were all prevalent here.

[Image shows a little boy happily swinging in an adaptive swing.  His wheelchair is beside him.]


Abby gives one of the little girls on the mini team a solo, entitled For My Brother, and then asks the girl's mother to "share a little about him."  Now this girl's older brother is not at the studio.  He's at home.  Mom immediately wells up with emotion and says, "I'm sorry.  It's really sad."  Mom is consoled by her daughter, while the daughter and all the other little dancers get emotional, too.

Mom proceeds to share super personal details of her son's medical history.  Trauma surrounding his infancy that resulted in surgery and a subsequent brain injury.  "He doesn't walk," she says.  "He doesn't talk."  It sounds a lot like Cerebral Palsy to me, but no one comes right out and says that.

If you've been reading here long at all you know how I feel about a disabled person's medical history being shared without their consent or permission.  For context, the boy in question looks to be a young teenager.  I don't know the extent of his disability, but I remain pretty committed to my feeling that if a child cannot consent to the sharing of their personal information in a way that is readily understood, or they genuinely don't or can't understand what they are being asked, don't share.  That's when extra caution is needed, not less.

Abby says this will be a very special dance for the little sister to do in honor of her brother.  Abby speaks via interview about how this girl is very mature in all areas.  And that this is because she "has to be."  Because "the person she should be able to look up to, she has to take care of."  She says the dance will show "what it's really like at home."

There are so many things I take issue with here.  First, the notion that having a disability automatically demotes you from your birth order in the family. (It doesn't.)  This older brother is still older than his younger sister, regardless of what happened to him when he was a baby.  Secondly, the insinuation that a ten-year-old child is somehow responsible for taking care of her older brother is just plain incorrect.  (Mom says in an interview that they have nursing care.)  Also, I want to know how Abby presumes to know what it is like for this little girl at home.  Because it sounds to me like Abby is just going out of her way to portray this older brother as a burden to his family.

The totally damaging view of disability does not stop there, though.  One of the other mothers (with two daughters on the elite team, who are leaving the studio as this is their final week) has a problem with Abby dedicating so much of her attention to the mini team and not on the two longtime students.  So she cuts off the mini mom with a swift, "I'm sorry this has been your life, but..."

Not "I'm sorry your kid had a traumatic infancy."

I'm sorry this has been your life.

Can I just say that those of us who are disabled are not life-ruiners?  The notion that we are is nothing short of damaging.

The single thing that was done right (which I am fairly sure was for the cameras) was when Abby went up to the older brother at the competition and talked to him about the dance.  Like, it shouldn't be worth noting that someone is decent to a disabled person, but some people are freaked out at the idea of talking to a disabled person.  So, kudos to her for that...I guess....

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Monday, May 2, 2016

Let's Talk About The Gap Between Disabled Adults and Parents of Kids with Disabilities

One morning, not too long ago, I was talking to my grandma on the phone.  Sometimes, we talk about disability-related things, and blogging.  One such conversation took a bit of a shocking turn when Grandma told me, "You know, right up until the time you girls were born, babies like you weren't raised at home.  They were institutionalized.'

I don't know why this came as such a surprise.  I've read of cases of mothers giving birth to medically fragile babies and being advised to institutionalize them as late as 1990.  For some reason, though, the thought never occurred to me, when thinking about my own birth and infancy.

According to Grandma, "We didn't know the first thing about raising disabled babies.  We didn't know anyone who had done it, and there wasn't the internet like there is today, to connect with other families.  But we wanted you.  We wanted to raise you and have you at home with us.  So we figured it out.  Your mom and I figured out how to clean your trach.  Your mom went to every physical therapy appointment with you and learned what was reasonable to expect for you to be able to do and what wasn't."

[Image is: Me and my sis, around age 2.  We are on a hardwood floor, wearing yellow sundresses and pigtails.  We are petting our grandma's cat, Miss Kitty.]


I often think about this when I interact with parents who have kids with disabilities.  There remains such a tremendous gap between us.  I have spent a lot of time wondering why this is.  My friend and fellow blogger, Ellen Stumbo articulates it like this:  "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."

When I posed this to my grandma, she also added, "We spoke for you...and we did your thinking for you, too!"

I've never heard it put quite like that before, but I think it makes a lot of sense.  It must be difficult for parents now to step back when their children (or adults in their child's community) speak up about something.  Parents, grandparents, aunts and uncles...I have known all of them to be particularly fierce in their love and protection of me and my sister.  We needed it.  We need them.

--

Even when we are grown up, we never stop needing our parents and other adults in the family - but the way we need you sometimes changes.

WE NEED YOU TO KNOW WE ARE ON YOUR SIDE:

It makes sense you are on the defensive.  It makes sense because you are used to fighting for us to have everything we need, want and deserve.  You fought through exhaustion and sleeplessness.  You learned to demand things.  You learned, though you could not fight every single battle, to win the ones you knew were worth fighting.

As an adult in your child's community, we have been where your child is right now.  We know how to articulate what they are too little to share.  Big feelings they may not have words for until they are grown up.  So when we speak up, know we are doing it for your child.  We are on the same team you are.  We want what's best for your child, too.

WE NEED YOU TO BACK US UP:

When we say something is harmful to our community, we are not saying it to hurt your feelings.  We are saying it because it actually harms us.  Trust that adults in your child's community have walked (and rolled) where your child has.  And if we speak up about damaging portrayals in media, or ableism in everyday life, back us up.  Parents and family members love and support us every day, and that is awesome.  Know that boosting our voices about issues that directly impact us is the most amazing way to express that love and support.

WE NEED TO FEEL NEEDED:

I can't think of anything more powerful that a child with a disability can see, than their parents or family members making friends with adults with their same disability.  Kids need role models.  They need to know there are people like them who grow up and are happy.  They need them to know their disability gives them identity and community and a place to belong.  That it is not just something that makes them different.

We are so used to needing people and asking for help.  It's so amazing to be able to help someone else.  So, Mom, Dad, or Grandma, if you have a question about how to deal with your child's hurt feelings about being left out, or if you need a suggestion about how your child can best carry money with them using a wheelchair, or how to address self-esteem issues, talk to us.  We want to help.  And we may have some really helpful suggestions...

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We come from different places.  You know trauma relating to our disability (such as a diagnosis day) that those of us who have not known any different never experienced.

We know difficulty around public perception and attitudes around our disability.  We struggle to integrate our identity as disabled people into our personhood, while surrounded by voices who tell us disability is not a good thing.  That we should ignore it.  Not speak of it.  Use different language...when all of those things are ours to choose.

But we all want the same thing, essentially:

We want your children to grow up knowing they are loved and respected.

We are here, parents.

And we still need you.

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