Monday, January 25, 2016

Let's Talk About Place Blindness and CP

Place Blindness:  the inability to orient oneself in one's surroundings, as the result of focal brain damage.

Place blindness, (also known as topographical agnosia) is something I have lived with my entire life without knowing it.  Until very recently I'd believed it when people around me told me my disorientation in public places was due to insufficient attention or the fact that I don't drive.  I happened upon one sentence on a social media site that changed everything for me.  It was something like:

Does anyone else with CP constantly get lost?

There was a small internet chorus of "yes!" and "I thought I was the only one!" Then came the response we were all waiting for.  There was a name for this.  Ever since then, it has felt like something has clicked into place for me.

In my brief research for this post, I've seen place blindness associated with autism and brain injuries.  However, there are no results when I search for both place blindness and Cerebral Palsy.  As CP is a result of brain damage, it would follow that at least some people with CP experience place blindness.  (Of my handful of friends with CP, every single one seems to have symptoms of topographical agnosia:  two get lost in Target stores, one said honestly that if expected to, she could not find her way home from three blocks away on a straight sidewalk.)

In layman's terms, place blindness means that I can navigate place to place only if there are significant landmarks guiding me.  I can go to the store beside my apartment building because my building is always in my line of sight as a landmark.  I can navigate inside the particular store because it is fairly small and they keep things in the same place.  I can even venture down the block, if I can see landmarks the entire time.  Landmark A must be visible from my apartment.  Landmark B from Landmark A and so on.  The same is true in reverse.  If the landmarks I rely on were to ever change, I would be lost.  Though I have lived in the same place for 10 years and my parents are 5 minutes or so away, I could not tell you how to get from here to there.  I know both street addresses, and the name of an important highway linking us, but I could not give you directions from place to place.  Likewise if you needed to rely on me to tell you how to get from my parents' house to mine, I would be even more confused, as all previous directions would be flipped and in reverse order.

I've gotten lost for an entire class period (that's the best part of 85 minutes) in my own high school because I arrived at the usual classroom slightly late and found a note that indicated the class had moved to a different room in a hallway I had no idea how to find.  While vacationing out of the country with my family at a resort, I once thought I was following my sister, and belatedly realized I had lost her and was following a stranger.  By the end of a week, I was finally barely beginning to be able to orient myself there.  I have trouble following if people point out something in a "Look over there," fashion.  "Over there," is too vague and I find myself looking everywhere and by the time I find where they mean, whatever detail that was pointed out to me has usually passed.  Your best bet is to point from behind me so I can follow the line of your arm down to your finger to see exactly where you are indicating.  This even extends to specific details on a TV show or video.

Here are a few key locations where my place blindness is the worst:

Parking Lots:  From the time I was very young, parking lots have been super disorienting.  If the door to the building I'm to enter is not in direct line of sight, I've been known to go in the complete opposite direction I'm supposed to.  When I was young, I did this to cope.  I felt if I picked a direction at random (left or right), I had a 50% chance of being correct, and I hated to annoy people by constantly asking, "Where?" This happens especially often if I need to go around the car to get to the door.  Walking back outside into a parking lot is equally baffling, because I can't easily identify someone's car unless they are driving it.

Department Stores:  Shopping in a bigger store is very difficult, because the sheer size is overwhelming.  I think it may have to do with being able to see the entire space from a single vantage point.  When I shop, even in someplace familiar like Target, things only look familiar when I am beside them.  Certain areas, like the food court, the checkout lanes or the multimedia section are fairly easy to find in a particular store because they also function as landmarks.  But in sections like clothing or grocery, I am lost again, unable to fit my surroundings into a larger context.  It is, to me, as amorphous as the lake against the grey sky in the picture below.

[Photo is a lake against grey sky, with blue mist rising off the water.  Photo credit to my sis.  March, 2013]


Restrooms:  Whether out to eat in a restaurant, at a friend's house I have never been before, or getting my hair done at the same place I always do, for some reason, finding the restroom is notoriously difficult.  If I ask where a restroom is and someone tells me "in the back," or "down the hall," for example, I struggle with the unclear directions.  Where is "the back" in relation to where I am?  Which hallway?  And once I find my way there, and exit, relocating my family or friends again is equally daunting and takes extra time.  The whole place looks completely different coming at it from a different angle.

There are some great tips in the link I shared above, but I would also add a few more, especially if you suspect your child with CP has place blindness:

- Teach your child to identify landmarks that may help them orient themselves in public.  ("There's the park with yellow and orange play equipment, that means we are almost home.")

- Make sure they know how to get in touch with you if they need to.  (If possible, teach them to memorize your cell number.)

- Send them out with a sibling or friend when possible, not alone.

- Make sure people who interact with your child on a day-to day-basis (such as teachers) know this is an area of concern, so they know to look out for your child, especially on field trips.

It's my hope that by finding this, you know that you are not alone.  There is a name for what you're feeling and there are ways to learn to cope.  By preparing and understanding that this is an area where you or a loved one might struggle, you'll be better equipped to function in your surroundings.

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Thursday, January 21, 2016

Grey's Anatomy: Disability Representation Series: 12x04 - "Old Time Rock and Roll"



The main disability plot line in 12x04 is one which centers around resident Stephanie Edwards.  Smart and driven, she is willing to do whatever it takes to further her education.  She has worked closely with Chief of Neurosurgery, Amelia Shepherd.  In this episode, Amelia summons Stephanie to assist her with a patient named Rachel, who is recovering from a decompressive craniotomy the previous day.  Amelia tells Stephanie that Rachel is the perfect candidate for early ambulation (which means that the earlier a patient is up and active after a surgery, the better their chances for a full recovery.)  

The first session, we see Amelia, Stephanie, and an intern named Hannah, all helping get Rachel to the edge of the bed.  Rachel groans in pain and Stephanie suggests maybe they should stop.  Amelia says they can't stop until Rachel either reaches the edge of the bed successfully or reaches a point of intolerance.  Hannah wonders how they will be able to tell when that point is, at which point, Rachel is seated at the edge of the bed and vomits.  Stephanie says it's pretty clear.  She offers to clean up and goes to grab a towel, while Amelia and Hannah help Rachel back to bed and reassure her she did great.  We see Stephanie standing off to the side.  Her hands are shaking and she is short of breath after seeing Rachel pushed so hard after such an intense surgery.

Amelia tells Stephanie she needs her to take the lead on Rachel's next session as Amelia is swamped with patients.  If they miss one day, they'll have to stop the treatment.  Stephanie asks Amelia if that would be such a bad thing.  She wonders if they are pushing Rachel too hard.  Amelia reassures Stephanie that though the protocol is traumatic, it is Rachel's best chance to heal.

When it's time for Rachel's next session, we see Stephanie taking the lead, with an assist by Hannah, in getting Rachel from the bed to a chair a few steps away.  They get her on her feet, and Rachel grasps Stephanie's arm, and pins her with an intense eye contact, as she groans in pain.  Stephanie says that's enough and helps Rachel back to bed.  Hannah protests they haven't gotten Rachel to the point of intolerance yet and Stephanie again insists that Rachel has had enough.



In the clip above, we see fellow resident, Jo, asking Stephanie if she wants to join her for lunch and Stephanie says she doesn't have an appetite because Amelia is making her torture a patient who just had brain surgery.  Jo is jealous at all that Stephanie gets to do and Stephanie decides to let Jo take the lead in Rachel's early ambulation.

In the next scene, we see Amelia confronting Stephanie (and Jo) demanding to know why Stephanie abandoned a patient.  Stephanie admits she couldn't do what she was being asked to do.  She couldn't put Rachel through that amount of pain.  Amelia says Stephanie is too smart for this  and asks her why she did what she did.  Stephanie then discloses that at five years old she was part of a clinical trail for sickle cell anemia, which involved many traumatic medical procedures, and being strapped to a table so she couldn't fight back.  Stephanie remembers her mother telling her, "It's for your own good."  Stephanie shares that it "felt like I was being punished for something that I didn't do.  For something that was inside of me.  And I'm not going to do that to somebody else.  I'm sorry.  I can't.  I won't."

I can't tell you how very deeply this resonated with me, having gone through numerous surgeries as a child myself.  As Amelia says, surgery is traumatic.  When you have surgeries and invasive medical procedures done to you from the time you're born and through your entire childhood, that is traumatic.  That level of powerlessness, and of helplessness is difficult to articulate.  The complete and utter lack of control over the amount of pain I went through from three days old through eleven years old?  It is intense and it did very much feel like I was being punished for something I didn't do, but was inside me nonetheless.  All the medical interventions absolutely were for my own good.  I recognize the need for them.  But they do leave scars, and not just on the body.  I have huge amounts of anxiety around the most mundane doctor or dentist visit.  I'm always told I have high blood pressure, because it's taken in that environment, where my stress level sky rockets because I am triggered.

The next scene in the video shows Amelia coming to apologize for yelling at Jo, and Jo tells Amelia that Stephanie lied about being sick as a child.  



In the next video, we see Amelia telling Richard (former Chief of Surgery and current Residency Director) that Stephanie abandoned a patient and lied about being sick as a child.  Richard looks to Stephanie and asks, "What do you want me to do here?" Stephanie says, "She won't believe me on her own..." and tries to leave but Richard stops her.  Then he tells Amelia that when Stephanie applied to this program, he got a call from a doctor at St. Jude, who ran the clinical trial.  Stephanie says she doesn't talk about being a patient anymore because she is a doctor now, and when she does talk about it, she only tells people she can trust.

What I love the most about this clip is the pause Richard takes to get consent from Stephanie before sharing her medical history with another doctor.  So often, we, in the disabled community, have our privacy violated when people around us share our diagnoses without our consent.  I really, really appreciated Richard's respect for Stephanie and that he waited for her to give permission before he told Amelia anything.



Starting at :50, we see Stephanie back with Rachel and Hannah.  Stephanie tells Rachel she knows this sucks.  When Rachel starts resisting, hitting Stephanie, Stephanie encourages her to "keep hitting me" and "focus on that."  Stephanie encourages her to keep going and tells her she is almost there.  This time, Rachel makes it successfully to the chair.  Stephanie reassures her that she's okay and she did great.  Again, Stephanie needs to step out for a moment, but this time she finds Amelia in the hall.  Amelia tells Stephanie she did excellent work and as Stephanie breaks down, Amelia hugs her and apologizes for not believing her.

I love this episode because it puts a finer point on what looks like medical related PTSD and really did a great job in letting me know I wasn't alone in my own feelings as a child, recovering from surgeries.  What makes this episode even more impacting is the fact that it was based in part on the experience of actress Jerrika Hinton's (who plays Stephanie Edwards) cousin.  Hinton was able to draw on the close familial experience to really give a depth to this storyline that I appreciate so much.

Such a strong storyline and the authenticity of it means it resonates so much more deeply.

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Monday, January 18, 2016

Let's Talk About So-Called 'Special Needs Proms'

[Photo: I'm seated on gray background material, in a blue, fitted, above the knee dress, smiling.  At 17 years old, this was as dressed up as I ever got.  Never a prom-goer, I've always been okay with that.]


Call me naive, but I was not aware that there was such a thing as a 'special needs prom.'  Perhaps it's something new, and I'm sure it was started with the best of intentions, but when this was brought to my attention by a friend last week, I was confused, wary and more than a little grossed out.  While I can definitely see some benefits in an event like this, mostly, I just an event that is rife with ableism.

EMPHASIZING EXCLUSION:
As my friend aptly pointed out, 'Why have a separate prom?  Don't they want to be treated like everyone else?"  Totally fair question.  And while I am sure a prom like this was originally organized to make sure teenagers and young adults with disabilities could feel included, the fact that there is an entire separate event feels exclusionary.

Instead of fostering an environment in schools of genuine respect for all people and making the legitimate high school proms that exist accessible for students with disabilities, the so-called 'special needs prom' was conceived.  This is damaging because it assumes that disabled people are a monolithic group.  There are so many different types of disabilities and within those types, there are different degrees of involvement and different presentations of disability in each person.  To view all disabled teenagers and young adults under the same umbrella term is not doing us any favors.

To segregate us under the assumption that we will not be asked to a typical prom only increases the divide, as my friend so wisely pointed out.

CHARITY:
While I can appreciate that many families with disabled members experience financial hardship, I can't help but feel that by making an event like this completely free and dependent on donations, it's more akin to a charity event than a celebration.  I agree that aspects of prom like makeup and hair, dresses and tuxes, not to mention limousines and dinner, cost an exorbitant amount.  If you factor in the ticket price as well, for an actual prom?  It's a big total.

However, with an event so tied to donations, who's to say that guests themselves can't be expected to bring something to donate, too?  Make the disabled community a part of the process.  Let us give, not only receive.

HOST/BUDDY:
A key facet of this event is the existence of a 'host/buddy' which is a student (ages 15-22, and, presumably, nondisabled) whose responsibility it is to be at the side of the 'honored guest' for the entirety of the prom.  On the website it is stated that the sole responsibility of the host/buddy is to "serve the Honored Guest and make them feel loved, honored, accepted and celebrated."

I find myself wondering how it benefits the students with disabilities to experience 'love, honor, acceptance and celebration' in a way that is manufactured and in fact, disingenuous.  How are the teenagers and young adults supposed to really, fully enjoy themselves with a stranger they have only just met and are forced to spend six hours with, and even be photographed with?

To assign every single 'honored guest' a 'host/buddy' implies that every single person with a disability in attendance requires one.  I know if I were at a prom like this as a high school junior or senior I wouldn't want to hang out with a stranger.  The whole point of a prom is to be able to enjoy yourself with people who enjoy you and who you are around every day.

Alternately, playing devil's advocate, say that a student does require this level of involvement from a 'host/buddy'.  Are there background checks or any other kind of measures taken to ensure that these student volunteers (18 and up) and the adult volunteers are safe people?  If it's going to be a stranger's job to spend six hours at the side of a person with a disability, there should be basic requirements in place for that role - beyond antiquated standards on appropriate dress.  Like it or not, we are a population that is more vulnerable to abuse.  The registration form for student hosts requests only the barest information.  (Name, address, T-shirt size, and Are you available from 3:30-9 PM on the day of the prom? to name a few.)  Not vetting the people around disabled teenagers and young adults is dangerous and honestly shows a lack of foresight.  Not to mention a lack of respect for the disabled population at this event.  We are worth the extra time and effort of being sure we will be treated well.

'NO DATES, PLEASE':
One of the most ridiculous aspects to this prom, in my opinion, is the above request, which is present on the website.  None of these disabled teenagers or young adults is allowed to bring a date.  The emphasis is supposedly on "fun" and "friends."  Essentially, the 'host/buddy' functions as the guest's 'date,' in the most bland sense of the word.

This assumption that disabled teens and young adults have zero interest in dating or romance is just plain erroneous and harmful.  My community has just as much a right to bring a date to prom as our nondisabled peers.  (No one would think to ban dates from a typical high school prom, would they?  No one would go!)  Being disabled often means we are also desexualized by the general public who may view teenagers and adults with hormones as perpetual children.  The truth is, there are just as many different kinds of disabled people as there are nondisabled people.  That means, some or even most of us are interested in dating and romance.  That rite of passage should not be denied us just because of some discriminatory beliefs about our community.

Not only are the prom-goers relegated to spend their prom with strangers, whom they literally meet the afternoon they arrive for the prom, but family and friends who may have accompanied them, must remain outside as part of the "paparazzi" on the "red carpet."  These so-called 'honored guests' are isolated from family or friends who may make them feel more comfortable, and  instead forced to spend several hours with a complete stranger.

I don't know what to call that, but it definitely does not feel like a prom to me.

CLOSING THOUGHTS:
While I'm sure an event like this was dreamed up with the intention to give "everyone" the chance to experience prom, it seems to, in fact, do the opposite.  Solely creating a prom for disabled students effectively stops the need for high school proms to be accessible.  By grouping all disabled students together in one event, it emphasizes that they are seen as collectively "different," and "other."

Not expecting any sort of contribution from the guests themselves to an event such as this feeds the idea that this night to remember is, in fact, a charity event.  Something put on nondisabled people who pity disabled people and labor under the idea that none of us will ever have a legitimate prom experience of our own.

The constant presence of a 'buddy' is both condescending and unnecessary for all involved.  While some guests may benefit from this degree of one-on-one attention, it is not needed for everyone.  I also believe that each and every volunteer should be subject to at least a background check, to ensure they are not a threat to a population already more vulnerable to abuse.

Finally, if the guests want to bring dates, let them bring dates.  Isn't that the point of prom?  And if they don't have dates, let them escort a person of their choice (family member or friend) so they feel fully comfortable and safe in this environment.

Have you ever heard of a so-called special needs prom?  Would you want to/have wanted to go if/when you are of age?  Would you want the disabled teenager or young adult in your life to attend an event like this?  Why or why not?  Sound off in the comments.

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Thursday, January 14, 2016

Let's Talk About The Mighty



At the end of the first week in January, I shared a post by Cara Liebowitz where she detailed a phone call with The Mighty staff members and her suggestions for where the site could stand to improve.  I received a comment which stated that a parent felt that Ms. Liebowitz's list of demands were "harsh" and "off-putting."  But they were interested in "discussion and debate" so they wanted to bring up their point of view.

Respectfully, this is much more than just a discussion and debate topic to me (and to many in the disabled community.) Ms. Liebowitz was not arbitrarily making a list of demands that suit just her. These are things many in the disabled community have been discussing (and bringing up to The Mighty staff) for a long time. The first time I was published by them I had all of my self-identifying language changed without my consent, and then published it that way. (This is referenced in the editor's note about the taking down of the Meltdown Bingo article, actually.) What is not mentioned there is the fact that in addition to respectfully requesting that my language preferences be restored, I also pointed the editor toward information on the harm of inspiration porn, the social model of disability and brought up the need for at least 50% disabled people on their staff. I did this last April, and was largely ignored on those points.

I found it troubling that Ms. Liebowitz's list of demands was viewed as “off-putting” and “harsh”. In my view, they are absolutely necessary, given the content that has been published on The Mighty (Meltdown Bingo was just the straw that broke the camel's back.) When there is a place online that publishes stories that mock disabled children in severe emotional distress, articles that defend sterilizing a disabled child and stopping puberty, and articles about a dad verbally and emotionally abusing his disabled son, that is dangerous. It isn't just that we are offended. It's that content like this is actually threatening to our safety, our bodily integrity and our basic rights as human beings. If you were to read an article on a site that featured any of the above topics, but about an able-bodied child, the outrage would be swift and fierce. No one would frame a dad screaming at his 5-year-old to do something physically impossible as “Oh that poor dad.” No one would see a story about a 10-year-old being sterilized without her consent as understandable. No one would see mocking an able-bodied child in severe emotional and physical distress as okay. But when these things are written about disabled children, suddenly they are fair game?

When the general public reads things like these (and articles rife with inspiration porn) it informs how they will interact with the disabled population. It puts us at risk. If people think it's okay to take random pictures of disabled people out in public just because someone sees us out and maybe struggling? Without our consent, that is exploitative. It frames us only as objects of pity and able-bodied people that see and help us not as human beings but as angels or heroes. It does disabled people no favors to be viewed as though merely interacting with us is a monumental favor.

I am well aware that not all the contributors are professional writers or bloggers. This is not about insisting everyone become that. It's about The Mighty having a content standard that will no longer allow the dehumanization, ridicule or damage to the very population being discussed on its site. Ms. Liebowitz said that The Mighty articles should have a purpose, she did not specify what that purpose ought to be. Having focus or direction for a piece should not be a hardship, it should be par for the course.

When many people in a minority group say that something is wrong and damaging to us, it is not “jumping on a bandwagon.” It means there is a problem. Instead of being put off by our refusal to tolerate any longer something that harms our community, we would love for you to hear us. Parents, this kind of harmful media will impact the way society treats your  disabled child. If there are people out there who want to make sure he is treated with dignity and respect, wouldn't you want that?

Yes, there are always going to be people who disagree and have a different take on things. I'm sure there are disabled people who don't know about The Mighty or have other things to worry about that take priority over that, or that just don't care. BUT you can't really deny that a lot of us are saying the same thing here: essentially that is that we are being harmed by the constant content that is overtly ableist and/or abusive toward a population that is already at significantly greater risk of being abused.

Ms. Liebowitz said what a lot of us feel. She was bracing herself for disappointment with regard to the phone call because history had shown her that The Mighty and its staff do not value us. The fact that the editors kept their word and were timely was surprising to her, I'm sure. Would it be considered heavy handed and power-driven for a white, straight, able-bodied man to demand to be treated with dignity? I don't think any of us would think twice about that, because we are used to men naturally being in a position of power and asking for what they need and what they deserve. We expect them to. Ms. Liebowitz is  a disabled woman. Our society is not used to disabled women standing up and saying, “enough is enough.”

Demanding to be treated with basic human dignity and respect on the page should never feel harsh or off-putting or power-driven. It should feel reasonable and expected and natural. I want Ms. Liebowitz to know that I absolutely am standing with her.

Author's Note:  Due to The Mighty's continued refusal to hear us, as of January 12, 2016 I have requested that The Mighty remove the two republished articles I shared with them, as it is no longer a place I feel comfortable associating myself with.  You can find the original posts at the links below:

Cautions and Kudos for Able Parents Raising Disabled Kids

Cerebral Palsy Awareness Month: Day 8: Letter to My Younger Self

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Monday, January 11, 2016

Let's Talk About Falling

[Photo is of me, smiling, dressed in a light blue coat with the hood pulled up.  It looks to have been taken when I was 7 or 8.  Photo credit to Mom and Dad, around 1989]

I was around seven years old, and engaged in a serious game of original Super Mario Brothers on the Nintendo Entertainment System with my brother when it happened.  My brother, though only four, was a Nintendo aficionado, and playing against him took intense concentration.  He and I were both on a large leather footstool, and I was kneeling.  My body tensed up as I tried to make Luigi jump over a hole, and I fell forward off the ottoman - stiffly and face first like a tree being felled in the forest.  My face collided with no less than three shelves which held the television set and boxes of our toys.

It wasn't the first time that I had ever fallen - far from it - but it was one of the most memorable.  I didn't cry or even tell my parents.  Just picked myself up and carried on, though my face was sore and I was sure it would bruise (though it never did).

Cerebral Palsy affects many things, including the ability to fall properly.  My header into the shelves was actually preferable to the way I usually went down.  Typically, I fell backward.  I remember, often, coming home from school with a goose egg from falling out of my chair and hitting my head.

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.

When I was younger, slipping or losing my balance were the most common reasons I would go down.  The older I got, though, the more likely it was that I would crash and burn spectacularly due to one second of inattention.  When I was a teenager, I went to climb up the stairs to the main floor of the house.  I was sure I had grabbed the railing.  But instead, I grasped the air, and fell back into the wall behind me, so hard that I dented the plaster.

These days, most of the time, I know better.  I grab for anything I can to slow my momentum.  I do anything I can to ensure I fall forward rather than backward.  And in the moments when a fall seems inevitable but can be avoided, I yell for help and my sis is there to give me a hand.

SIMPLE THINGS YOU CAN DO:

- Practice falling:  This sounds weird, but the more you can train your body's muscle memory in what it feels like to fall forward, and break your own fall, the safer you will be.  So get a mat, and practice from a more reasonable height than fully standing.  Start on your knees and practice putting your hands out in front of you to catch yourself.

- Be available:  If you have a child or another family member with CP, recognize that their balance will be affected.  Offer to help and be open to what your family member needs.  My youngest brother often asks, "What can I do?" which works really well for me.  Sometimes, giving us the assistance it looks like we need actually throws off our balance even more, so be patient (it takes a lot of concentration to talk and do something that could potentially result in a loss of balance) and stay calm.  We are nervous already.  Nerves impact our spasticity and make it even harder to move.

- If we fall in front of you, try not to freak out and please don't laugh:  It can be scary and/or unnerving to witness a fall.  For people with CP, though, it's just a part of our lives.  Please don't laugh or make jokes at our expense while we are on the ground and don't gawk and point asking everyone around you if we are okay.  This has been the very best example I have come across to the reaction I prefer when someone sees me fall.

- When possible, take the mobility aid that offers you the most security:  If you are like me, and have a couple different mobility aids to pick from, always choose the one that offers you the most security.  Family and friends, understand that outside factors like weather (rain or snow), linoleum floors, and crowds are all potentially difficult to navigate through, and might mean we would prefer wheelchair to crutches, walker to walking unassisted, etc.

Falling is a part of my reality as someone with CP.  It's just a fact of life that our bodies don't listen to what we want them to do.  But if we can feel a little more prepared, secure and like we can trust those around us to stay calm and offer help when needed, it can make things a whole lot easier.

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Monday, January 4, 2016

Let's Talk About Safety Issues and Disability

{Photo is of our apartment stairs. Photo credit to my sis: January, 2016}

THE ISSUE:
The other day, I watched The Right to be Rescued, a brief documentary released on the 10th anniversary of Hurricane Katrina, which detailed the lack of any kind of plan when it came to rescuing disabled citizens.  They were left behind, abandoned, while the able bodied evacuated.  Many died.

Unfortunately, this isn't the first time I've heard about disabled people being overlooked with regard to emergencies.  Talking to a friend on the phone around the anniversary of September 11th one year, she shared a story she heard about one disabled woman, who insisted coworkers get to safety, voluntarily staying behind because it didn't make sense for more people to perish than necessary.  More recently in September, 2015, Barbara McWiliams died in a California wildfire when firefighters were apparently "too busy" with general evacuations to save her.

IT GETS PERSONAL:
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?

Neighbors were also on high alert, and those who were able in our accessible building were in the hall, looking to each other, wondering what to do.  When the fire alarms go off, the elevator isn't to be used.  At the time, my sister and I lived on the third floor of our building.

Thinking quickly, Tara and I decided to err on the side of caution and make our way down the stairs.  Returning to our apartment, I swapped out my purple chair for my crutches and we began making our way down the three flights of stairs.  Having recently been injured, and not having grabbed shoes, plus with the stress of the situation impacting my spasticity, it was slow going.  Still, I was determined.  When faced with the choice to wait on the third floor with piercing noise and a potential threat, I chose to act.

The long-ago lectures on fire safety echoed in my head.  Always, the first goal is to get out.  A wait and see attitude is just not wise.  So, even though I was the most anxious at the thought of my wheelchair burning, I also knew we had to get out.

We were still on the stairs, making our way down, when the building's caretaker appeared.  "What are you doing?" she asked, sounding stern.

"Getting out," we told her, dumbfounded.

"You're supposed to stay in your apartment when the fire alarm goes off!  You know better than that!"

Tara and I didn't have time to exchange glances, and we weren't about to go back upstairs without the all clear so we continued down.  We were both thinking the same thing:  the caretaker's advice sounded awful and didn't make any sense!  The presence of fireproof doors and sprinklers wouldn't do any good if smoke got to us first.

We made it to the first floor and with the fire department present and trying to disable the alarm, we were assured there was no danger.  Still we waited for the alarm to stop blaring before we returned upstairs.

SOLUTION?
Writing about these issues is difficult for me as it brings up a lot of unsafe feelings due to the fact that there really are no easy answers.  There are plenty of residents in our building who don't have the mobility to get down to the first floor and outside without help.  I've often thought about what would be done in the event of a real fire here.  24 apartments and only a handful of us can independently (albeit slowly) evacuate if necessary.

A friend shared in October about her daughter's school field trip to the fire station.  They had a real fire drill there for the elementary age kids with fake smoke.  Her daughter has CP and found climbing out a window significantly more challenging.  How do we help our kids, she wondered?  How do we help ourselves, I wonder, too.

I don't have all the answers, but I will share what little I have come up with for moments when evacuation is necessary:

1)  Don't be afraid to think creatively.  Living with a disability often means creative thinking.  So, if you are disabled, think about the safest, quickest way out of your residence before an emergency occurs.  In the event of a fire, stay low to the floor, and block the crack under your door with clothes or blankets to avoid too much smoke inhalation.  If you live in an area where flooding is a possibility, keep a life jacket on hand that is easy to put on, so you can stay afloat, should you need to.  Also, if you live in an apartment, do everything you can to ensure a first-floor dwelling.

2)  Be proactive.  The most important thing, I think, is for us to feel empowered in these circumstances that can leave us feeling so helpless.  I firmly believe that doing something is always better than waiting for a fire or flood or impending collapse to happen.  Even if what you are doing seems small, remind yourself that in this way you are fighting for your life.  Know that you are worth saving.

3)  Call for help.  Always have a phone close by and don't be afraid to use it to call for assistance.  Also, know where you are geographically, so you can describe it to the operator.  All these details will help rescuers find you quicker.

4)  If possible, have backup mobility aids stored somewhere else.  My biggest fear in an event where my residence is threatened either by fire or flood, is that I'll not be able to evacuate.  Also, though, that if I do, I'll be separated from my wheelchair and/or crutches.  If you or your loved one has spare mobility aids (old ones that you/they don't use) store them somewhere other than where you live, but somewhere you or a loved one could potentially access if needed.

Let's have a conversation about this.  What tips do you have for those of us who are disabled and could face fire, flood, or another disaster and are in need of a plan and/or resources?

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Sunday, January 3, 2016

Grey's Anatomy: Disability Representation Series: 10x15 - Throwing It All Away



This episode of Grey's Anatomy is a favorite for me, in large part, because of these scenes with Arizona.  It's moments like these (two seasons after the plane crash and Arizona's amputation) that give me hope that her injury has not been forgotten about.


In the first 30-40 seconds of the first clip, we see that Arizona's prosthesis has fallen victim to her daughter's sippy cup full of juice.  

A couple of things stand out about this to me:  first, seeing adaptive equipment in a person's natural environment.  Arizona doesn't sleep with her prosthesis on anymore than I could sleep in my wheelchair.  At night, it (and my crutches) are beside my bed (just like Arizona's leg is beside hers.  

The second thing is Arizona, frustrated, telling Callie that she has told Sofia (their toddler) not to play with her leg.  Callie corrects Arizona.  At least in Callie's presence, Arizona has not yet told Sofia that her leg is not a toy.  I like this moment because it points to a very important aspect of having adaptive equipment around children: we want them to be comfortable around it, and not afraid of it, but we also want them to respect it, and to understand that we need it to move around.  I think it makes sense, given that Arizona is relatively new to her injury, that this conversation may not have come up yet.

The next 10 seconds of the clip, we notice that Callie has come into the bedroom with a box.  She, Arizona and Sofia have recently bought this new house and are still unpacking boxes.  Callie has stumbled upon Arizona's wheelie sneaks.  She asks Arizona what she wants them and Arizona says "trash."  She has no use for shoes with wheels anymore.  

I like that Callie asked what Arizona preferred she do with the shoes in this instance, and I like seeing the reality of the continued adjustment for Arizona, regarding what to keep from her former life, and what to let go of.

From :57 to 1:47, we see Arizona at work, talking to a little boy, Jared, about the surgery he'll need.  Jared is distracted by Arizona's prosthesis, which is visible under her scrubs.  Jared asks, "Are you a robot?"  Jared's mom is pretty mortified and reprimands him to have, "Manners!" but Arizona laughs and tells Jared that he has a "valid question."  She then explains, in simple terms, that she was injured and lost her leg, and got a new one.  Jared asks, "Can you jump super high?" And Arizona says "no" but when his mother isn't looking, she nods at Jared and mouths, "yes," and Jared is impressed.  

I love that children's curiosity and questions are addressed this way, as well.  Too often, kids innocent questions are shut down by mortified parents and kids grow up to be nervous around disabled people, or prone to ignoring us altogether - a side effect of being taught to ignore our disabilities.  I love that Arizona addresses Jared's question directly and honestly (and also with a little humor).  I often share the story of the moment my youngest brother surprised me with the question, "Why don't I have crutches like you?"  I responded with as much candor as Arizona, and my brother was able to accept this answer and move on.  

At 2:54, we see Stephanie and Jo, discovering an abandoned 9-month-old baby in a cardboard box outside the hospital.  It's Arizona who discovers the baby has surgical scars on his chest and they immediately begin to assess his cardiac health.  

I appreciate that this aspect is shown because its presence is a comment on how medically fragile babies (and by extension, disabled people) are at risk for abuse or abandonment.  We don't know why this baby was abandoned, but it's a safe guess that his medical needs played a role.  In an episode dedicated to the theme of discarding (things, people, and experiences) it's notable that this baby is abandoned like trash himself, and was only found by chance.

At 3:27, Arizona is struck by a gurney being pushed by Stephanie, and the fall breaks Arizona's prosthesis.  Stephanie is understandably shaken and sorry, but Arizona says it's okay, she has another in her car.  She has to wear her "old beater leg" until her other one is fixed, even though it chafes her.  
This is another great instance where just the existence of a scene and its content is such an important part of the commentary on disability issues.  Grey's doesn't give us a lecture on the fact that adaptive equipment is expensive and ridiculously difficult to obtain.  They show us that.  Arizona doesn't have 12 billion spare legs.  She has one spare in her car, probably, for an unforeseen event like this.  It's a spare because it stopped working for her and the 5 years, or however much time insurance tells her she has to wait before renewing adaptive equipment passed so she was allowed to get another, which was covered.  With her good leg injured, Arizona is forced to wear one that hurts her.  But, as she says, "it's better than nothing."  So, so true.  And I love that this scene exists to comment on these types of moments experienced by the disabled community.


Through :48 on the second video, we see Arizona and Cristina (who is my favorite character!  Yay!) doing a work up on the baby who was abandoned.  Arizona asks how the baby is doing and Cristina lets her know what she has found out regarding some of the medical procedures the baby has had done.  Arizona asks, "Have you cuddled him?  If I was left in a cardboard box, all I'd want is cuddling, right?"  Arizona picks up the baby and holds him.  Before she leaves, she hands the baby to Shane, who is nervous.  Cristina, though, says, "Take the baby.  She's right.  He should be cuddled.  You're not gonna hurt him."  

I love this scene because Arizona is so aware of the baby's emotional needs and not just as a set of symptoms.  And once she draws Cristina's attention to that fact, Cristina continues to make sure the baby's emotional needs are met (through Shane) once Arizona leaves.  I think it is no exaggeration to say that when she first lost her leg, Arizona felt worthless, but now that time has passed and Arizona's gotten her sense of self and confidence back she knows our worth does not lie in what we can physically do.  

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.  This seems obvious but there are still so many people out there that would sooner ignore the disabled population, say it's like their medically fragile baby died just because they are not perfect, or actually abuse and murder disabled people.  Those grave facts make it clear to me just how necessary and powerful it is to have a scene like this included in Grey's Anatomy - especially as doctors and surgeons themselves are typically very focused on fixing and healing and not necessarily on emotional needs.

At :50 to 2:20 we see Arizona and Callie with patient Alyssa Cramer, a preteen girl with Arthrogryposis, which is causing her severe pain.  She is in for another corrective surgery that might or might not have an impact on her pain.  Alyssa asks if she can have a double amputation instead of the scheduled surgery but her father is worried about disabling her.  Alyssa says, "Disable me?  I'm disabled now." Callie, who has worked on Alyssa for years, tries to convince her to go with the scheduled surgery but Arizona surprises them all when she says, "I'm not so sure."  Callie is upset that Arizona didn't back her up and says it's like Arizona wants Callie to "throw away" three years of hard work on Alyssa by agreeing to an amputation. 

What I love about this scene is the fact that we see Alyssa speaking for herself about what she's experiencing.  Her dad fears the stigma she'll face if she gets the double amputation, seeing the surgery as taking something away from his daughter, instead of realizing what she'll gain from a life largely free of pain and aided by prostheses, should she choose to wear them.  It's really notable that Arizona can see what Alyssa might gain from amputation, and it says a lot about her own healing that she is able to recognize how the surgery will help Alyssa instead of seeing it as someone "giving up" on Alyssa, or seeing Alyssa as less than whole.

From 2:21 to 3:13 we see Arizona seated on a couch with her prosthesis beside her, while Miranda helps bandage another of Arizona's blisters from her beater leg.  Alex comes in to pitch an idea for little Jared, to cut down on the invasiveness of his surgery and the length of his recovery.  Alex is midway through his explanation when he realizes Arizona is without her prosthesis, and instantly turns around and says, "I never see you like that!"  Once he leaves, Miranda smiles and says that Alex "came off his hinges" when he saw Arizona without her leg.  Arizona then says "There are two kinds of looks that you get: Without the leg on, they feel sorry for you, and with the leg on they think you're amazing and brave or...a robot..."  

She's not wrong.  The same thing goes with other adaptive equipment. Without it (and even sometimes with it) I get pity, and if I am out in public, I'm doing "such a good job."  I like these moments because they make me feel so much less alone.

And finally, from 3:13 to 4:33 we get this amazing conversation between Alyssa's dad and Arizona.  He asks if Arizona has kids and when she says she does he asks how she could recommend a double amputation.  He worries about kids making fun of Alyssa if she is "crippled" and Arizona interjects to correct him by saying "disabled."  He asks how she could do that and Arizona wordlessly pulls up her scrubs a few inches revealing her prosthesis.  Alyssa's dad is stunned and asked how long Arizona's had it.  She says she's had it since before they met, and he says he never noticed.  Arizona says simply, "Why would you?"  She shares about her fears from early on in her recovery - that she wouldn't be able to care for her daughter, or work, and that now there are "very few things I can't do."  
This scene is so full of goodness:  Arizona correcting Herb's ableist language.  Arizona choosing to reveal her own medical history because she knows it will help Alyssa if her dad understands that a double amputation won't limit her daughter nearly as much as being bedridden and in pain all the time.  I love that Arizona tells him she had fears early on, but she adapted, and is now able to do many of the things she did before.  She shows him his ableist ideas are wrong and harmful, and he is able to maybe come around and understand that amputation is for the best in this case.


From :22 to :57, Callie confronts Arizona about telling Alyssa's dad amputation is the right call.  She is so invested in doing the originally planned surgery, Callie cannot consider doing an amputation on Alyssa.  Even when Arizona points out that Callie has done palliative amputations before, Callie says they were on a soldier - a grown man - not a child she has been trying to help for three years.  Arizona says that she thinks Callie might be afraid to amputate in this case and that it might be Arizona's own fault (due to Arizona believing that Callie was the one to amputate her leg, which has caused many problems between them.)

This scene is interesting because it shows us that the trauma of the accident that caused Arizona to need an amputation didn't stop at Arizona.  It extends to Callie, too.  Living with Arizona post-injury and dealing with Arizona's anger for months has changed Callie and made her want to fight even harder for people to retain their intact bodies.  I love, though, how Arizona gently starts to challenge that notion.  Given that Arizona's pretty far along in her own healing process and in finding her identity now as a disabled woman, it's great that she's able to caution Callie that she is too close to this and is letting her emotions take over her judgment.

From 3:18 to 4:40 we see that the Cramer's have asked to see Arizona.  Herb needs to hear again that Arizona thinks amputation is the right call.  She begins to explain, and Callie jumps in...and agrees with Arizona, having realized that more surgery would likely mean more pain for the rest of Alyssa's life.  Herb says, "She'll never run?  I'll never walk her down the aisle?" and Callie says (brilliantly) "Not unless we amputate."  Herb agrees and asks them to schedule an amputation.  He wants her pain to stop today.  Alyssa hugs him and thanks him.  

I love this storyline because it challenges the notion that a person needs a whole body (or a working body) to be happy.  What we need are people who listen to what works for us, and adaptive equipment that will help us live the lives we want to live.



Through 1:53 of this next video, we see the ongoing storyline involving one of the residents, Leah, having lodged a formal complaint.  Arizona has assumed the complaint was against her (since Arizona cheated on Callie with Leah but now is back together with Callie.)  It turns out, though, that Leah's complaint is actually against Callie, who, as Leah points out, "chose not to teach me in a moment which put a patient's life in danger."  Arizona takes this to heart and during Alyssa's amputation, Arizona puts aside her and Leah's personal history and teaches Leah, encouraging her to watch because Arizona is going to have Leah do the other leg herself.  

I continue to be struck by just where Arizona must be in her own healing process to be able to perform the very surgery that she so resented for so long.  I think it shows that she has come really far in how she views herself and also what was done to save her life.  She's moved through her grief and her anger.  I also appreciate that she can take a note.  When Leah points out that Arizona and Callie chose not to teach her, Arizona steps up and makes a point to do just that.  She keeps it professional and does her job as lead surgeon at a teaching hospital.  She doesn't let her emotions lead, she makes sure Alyssa is taken care of, and she also  teaches Leah.

At 1:56, we see Cristina coming into the attending's lounge to update Arizona on the baby (whom Cristina has crassly named "Oscar" because he was found in the trash.)  Arizona is bandaging her blisters again.  When Cristina notices, Arizona says, "Bad leg day," and Cristina, not missing a beat, comes over, sits down heavily beside Arizona, props her feet up on the table and says, "Me, too."

I love this moment because, first of all, Cristina does not flinch at Arizona without her prosthesis, as Alex did earlier.  She was in the plane crash, too, and is well aware of the extent of Arizona's injuries so they do not faze her.  I also love that Cristina doesn't fall all over herself or become awkward when Arizona mentions she's in pain related to her injury, Cristina simply says, "Me, too."  She isn't super self conscious about it.  I always appreciate a lack of fear and/or awkwardness.  To me, it indicates a level of acceptance that isn't really matched by any of the other surgeons so far.  (Though, to be fair, Cristina is the only one who was stranded in the woods with Arizona.  The others - Miranda, Alex, Callie, etc - don't have that insight.)

Next, Cristina asks if Arizona still dreams about the plane crash.  Arizona says she does, especially when she's anxious.  She says she dreams of their coworkers, who were also trapped with them, and the pilot.  Cristina admits that she dreams about Arizona screaming - says she wouldn't stop screaming - and sarcastically but gently thanks her for that.  They hold hands briefly and Arizona says "Good job today" treating the baby.  Cristina says he is a lucky kid.

I love this brief moment of connection because we actually rarely see Cristina's guard down in this manner and I wonder if Arizona being in a more vulnerable state (without her prosthesis) brings this out of Cristina?  They are tender, asking after each other, knowing the trauma of the crash was equally devastating psychologically, if not more than physically.  Cristina, who is typically quite guarded and sharp is softer here.  I love seeing that, and I love how honest they are with each other about how the crash still impacts them today.


Through :45 in the final clip above, we see Callie, home and frustrated, after a difficult day at work.  What strikes me the most is that in her list of things that made her day terrible, Callie says that she "failed a patient."  She still sees Alyssa needing a double amputation as a failure, because her treatment option as the orthopedic surgeon didn't work.  We also hear Callie address Arizona's cheating with Leah and how she keeps thinking she and Arizona are okay now, that they've bought a house and are moving forward, but now she's dealing with some of the fallout borne of Arizona cheating on her and Callie is not sure they will ever be okay again.

This perspective is interesting because it is so layered.  Callie and Arizona look at the same patient and come to the same conclusion ultimately but Callie sees it as a failure, likely because she feels she has failed Arizona, also, in making the call to amputate Arizona's leg.  Life is messy.  Relationships are not cut and dried, and when one person goes through something so traumatic and the other is left in limbo waiting?  That's a trauma, too, and we can see that it has affected Callie.  Even though, as Arizona has said, she wasn't on the plane, almost losing Arizona left its mark on Callie.  They are coming from such opposite places with regard to this and that is a difficult thing when it's someone you love.  I like that they don't shy away from showing that here.

At :45, Arizona says that for over a year she has been thinking only about herself and Callie snaps that she shouldn't apologize one more time because it's getting very hard to keep forgiving her.  Arizona talks about how she had to figure out how to be herself again and who she is now.  She talks about how she was previously a naturally happy person who used to skate at work, and then the accident happened and "everything was hard.  Everything took thought and planning."  Arizona says she wanted to tear down who she was, throw it all away and start again.  That she is starting to have a sense of who she is now.  She has realized she doesn't need much to be happy but who she does need is Callie and Sofia.  But Arizona is afraid that she's realized all of this too late and therefore has made Callie give up on her.  Callie turns and walks out of the room, causing Arizona to break down in tears.  

I appreciate this part of the scene so much because it's been a long time coming.  Arizona has done a lot of rebuilding and a lot of soul-searching.  But more than that, she has made mistakes.  I cannot tell you how much I appreciate the fact that Arizona, while disabled, is still portrayed as fallible.  She hasn't become a perfect, innocent angel due to her amputation and she hasn't become a monster because of it either.  She's human.  She makes mistakes.  She hurts the people she loves.  I cannot tell you the amount of media I see out there where the disabled character is either can do no wrong, or is disabled because they are bad, or they become bad and bitter once they are disabled.  All of these are portrayals that dehumanize disabled people.  They do us no favors.  That's why I appreciate so much that Arizona retains her humanness.  I also love that she addresses the process she had to go through adjusting to certain aspects of being disabled - lacking spontaneity - etc. which is something many disabled people (myself included) can attest to.  Arizona's fear of Callie "giving up on her" has been prevalent since after the crash.  However, early on, Arizona felt that Callie would be "giving up on her" if she let them amputate Arizona's leg.  Now, she is afraid Callie will leave her.  And in this moment, it appears she has.

At 2:16, though, Callie walks back into the bedroom, with Arizona's wheelie sneaks, still in their box.  Callie hasn't thrown them away after all. She kneels at Arizona's feet and, softly, honestly tells Arizona, "You shouldn't have to give up anything," while sliding the shoes on her feet.  Then, we see Arizona skating on the sidewalk in the dark, in front of their house, Callie supporting her.  They are both laughing.

This is such a lovely moment of acceptance, forgiveness and love.  I found myself thinking, too, that Callie knows what it's like to have to redefine who you are after an injury.  It's only been a couple of years at this point, since a car accident caused Callie to suffer (among other things) a traumatic brain injury.  While not the same thing, Callie knows what it's like to fight your way back from something like that.  She knows how, in the heat of the moment, you may lash out, hurting those closest to you out of frustration.  She knows, too, that Arizona never gave up on her.  So, without patronizing or pitying, Callie ministers to her wife, and yes, there is something almost reverent about it.  It's so powerful watching these two women supporting each other so that Arizona can hang onto a piece of her previous self that made her so truly happy.

This is such an excellent episode and has so very much depth and really important aspects of disability and positive representation that are rarely seen.  It might be one of my favorite episodes of Grey's ever, for disability representation.  (I know you couldn't guess by the 4,000-word-long epic blog post dedicated to it.)

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