Tuesday, December 29, 2015

Top 5 Posts of 2015

As the end of the year is upon us (and as I haven't had as much to post lately) I thought it might be a good idea to share the 5 most popular posts of 2015.  It's worth noting, too, that these are the top 5 from this year, which contain original content, not solely a video or a link to another site.  A few new people have found there way here lately, too.  If that's you, these are some great posts to read to give yourself a sense of what I share about here on Tonia Says:

Photo credit to my sis.  April, 2015


Some great dos and don'ts, as well as the importance of privacy, respect and consent of disabled kids.

"Did the disabled person in your life give consent to have this personal information shared with the wider world? If you are writing about us, let us read it.  Let us tell you whether or not we are comfortable with you sharing it with strangers or not.  Keep in mind, very small children cannot consent, and disabled people with intellectual or other developmental disabilities may not be able to consent in a way that is readily understood.  In this case, even more caution is needed.  Think about yourself at a similar age, and what you're about to share with the whole electronic world."

4.  Self-Identifying as Disabled:

In the disabled community, we hear a lot about person first language and that it is how we should identify.  However, many of us prefer what is called identity-first language:

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

3.  About Me:

Want to know more about me and my story?  Click here and see some adorable pictures and video, too!

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

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

Oftentimes, I'll review books, movies or TV shows for disability representation and I was so excited to be able to review Jen and Bill's first book.  I am a huge fan of their show, The Little Couple!  (PS The newest season starts next Tuesday!)

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

1.  What You Need to Know About Pushing Someone's Wheelchair Without Permission:

A common (and frankly, scary) problem for those of us in wheelchairs is when well-meaning strangers come up and push us out of nowhere, without asking first.  Please read this to find out more information about what you can do instead, and, if you're disabled, to know you're not alone.

"Our wheelchairs are an extension of our physical bodies.  (In essence, our wheelchairs function as our legs.)  By rushing over, grabbing our chairs and starting to push us, it's as if you are physically picking up a non-disabled child, teenager or adult you don't know, and carrying them to where you assume they need to go.  Sounds pretty rude, right?  Pretty invasive?  It is.  It's jarring.  It's frightening.  Frankly, it's violating.  There's a good reason you don't see strangers physically transporting each other in this way - without warning, and without waiting for consent."

Sunday, December 20, 2015

Officially Accepting the Liebster Award


You guys, I was nominated for the Liebster Award!  Imagine my surprise when I got a comment on a blog post congratulating me on my "award" when I had no idea I'd been nominated for anything!  
I must thank Vilissa Thompson at Ramp Your Voice! for nominating me!  Vilissa uses her blog to comment on important issues around her dual identity as both a disabled woman and a woman of color.  She has fast become a close friend and someone I can trust to always tell me the truth, even if the truth is a hard pill to swallow.  I admire her heart and unique skill set, and I admire her no nonsense approach to speaking out on issues that need attention, for populations that are often ignored, reviled or pitied.  
I have to say I was beyond shocked to see that my blog was among the eleven she had chosen and I am really thankful for the nomination, support and I'm so happy to see other people finding my blog now, thanks to Vilissa.

What is the Liebster Award?
The Liebster Award is a distinction given to bloggers by bloggers to highlight new and upcoming blogs.  “Liebster” means “beloved” or “dearest” in German.  The award not only recognizes good work, but also gives the blogger encouragement to continue writing.

What Happens When You Accept the Liebster Award?
  • Thank and link to the blogger who nominated you 
  • Create a post on your blog, displaying the Liebster Award logo
  • Answer the 11 questions assigned by the blogger who nominated you
  • Provide rules/instructions for accepting the award
  • Nominate 11 new favorite bloggers for the Liebster Award
  • Come up with a list of 11 new questions for your nominees
  • Notify the nominees
  • Post your Liebster Award blog post link in the comments column of the related post of the blogger who nominated you

My Answers to Vilissa’s 11 Questions:
1)  What caused you to want to create a blog?
It was something that was on my mind for about a year before I actually did it.  What put it over the top was a totally great conversation I had with a friend and former coworker about a blog post she had shared written by the parent of a disabled child, detailing what she thought were great tips on teaching nondisabled kids to interact with disabled ones.  Some of the tips WERE really good, but some were damaging, and I wanted my friend to know that.  After our conversation, I started Tonia Says (July of 2014) and in April of this year, I created Tonia Says on Facebook which I post to more frequently and can be easier to follow.  Also much easier to interact with people there, which I love!
2)  When people think of your blog, what is the first word you hope comes to mind?  
Bridge.
I want to unite those of us with physical disabilities (those with CP, especially.)  But I also want to create a path between disabled adults and parents of disabled kids.  I want all of us to be able to feel free to exchange experiences and respect one another in the process.  I want parents of disabled kids to not hesitate to seek me out when they have a question that I could maybe help with, or just to let another person with CP know that you are not alone.

3)  Share a memorable moment you had this year.  
Actually seeing that bridge I was talking about being built.  Forging a friendship with a mom of disabled kids and meeting and really connecting with her daughter who has CP, too.
4)  What is a secret talent or gift you have?  
I have a really stellar memory for pointless information.  I can remember dates, times and other details about things people might not find important.  But if you want to know what time a younger relative in my family was born, or what line of dialogue someone says on Grey's Anatomy at a totally unexpected moment?  I've got you covered.  I can also make fish lips and roll my tongue.
5)  If you could say something to your 20 years old self, what would it be?  
You are going to be okay.  You aren't always going to feel like this.  It's going to get better.  I promise.  Just hang on.
6)  What is the best thing about being a disabled blogger?  
The community I found of other disabled bloggers, definitely.  I've met some friends I feel I'll have for life via our shared experiences with disability, our heart for change, etc.
7)  Name one of your goals for 2016.
To keep exercising and to stay healthy.
8)  What was your favorite toy or book as a child?  
I ordered Koko's Story from a book order in second grade and I was transfixed by the knowledge that Koko could learn ASL and communicate so many thoughts.  (For those wondering, Koko is still alive, and turned 44 years old this year.)
9)  Name the book that you must read next year, and why?
Any we decide to read in the little book club that my sis and I and a friend started.  We will likely focus on books with disabled characters and discuss them amongst ourselves.
10)  Why does your voice matter in the disability advocacy realm?  
Because, though many disabled people have shared experiences, there is only one me.  And even if I can only ever connect with one person through this, it will have been worth it.  Connection and community is so vital.
11)  What does being connected with disabled advocates like myself mean to you?
It means we are not alone, and that is so powerful!

My Nominees:
Marissa Bensman at A Crippled Compilation.  Marissa has fast become one of my best friends.  Her sweet, straightforward candor about the reality of life as a woman with a disability really has helped me in so many ways.  She is one of my bridges, and has let me know I am not alone in so many ways.
Fox at Fox Talks With Letters.  Fox is a fellow National Novel Writing Month winner and poet.  As an advocate for the autistic community, Fox is thoughtful, articulate, and brutally honest, telling the truth about important realities that he and his friends who talk with letters, face on a daily basis.
Ryan at i am in my head. Ryan shares about his daily life, including trips to his favorite store, facing discrimination, and how it feels to be in his body with autism.  Ryan's wit and humor as well as his intelligence and presence always come through when reading his posts.
Karin Hitselberger at Claiming Crip.  Karin has a no-holds-barred approach to sharing about her life with CP.  I've read her blog so many times and been like, "So I'm not the only one who feels like this!"  It's a great feeling.
Phillip Reyes at Faith, Hope and Love...With Autism Phillip blogs with beautifully honest prose about the merging of autism with his faith.  His way with words is out of this world, and his insights are so valuable.  
Kathleen Downes at The Squeaky Wheelchair  Kathleen writes about moments I have faced in my own life with an unflinching reality.  She is not afraid to discuss why those of us with CP can't be spontaneous, for example.  She also shares her wit with amazing hand-drawn comic strips.
Cara Liebowitz at That Crazy Crippled Chick  Want brutally honest commentary about some of the hot button issues facing the disabled community today?  Check out Cara's blog for a major reality check and get ready to learn a thing or two.  It's amazing over there.
Kara Ayers at Roll You Home  A place to go if you are disabled and want to start a family.  Check out the story of a disabled couple and how they navigated not only having a biological child, but also adopted one with a similar disability from overseas.
Stephanie Woodward at Ms. Wheelchair Florida 2014  Though this blog has not been updated for quite sometime, its posts remain relevant as ever for me.  For firsthand information on why it's damaging to call someone "too pretty to be in a wheelchair," and a stunning post about a lack of accessibility in homeless shelters as well as other topics, check out Stephanie's blog.
Emily Ladau at Words I Wheel By Emily is on top of just about every single headline that concerns the disabled community.  From the troubling new campaign that tells nondisabled people how to interact with disabled people, to a damaging osteoporosis campaign tagline, Emily addresses it all on her blog.
K at Transcending CP  K is a college student who reminds me so much of me about ten years ago.  She's living with CP, she's a multiple, and she's just trying to find her place in the world.  Her narrative voice is warm and matter of fact.  I always feel like she is talking to a close friend when I read her posts.


Wednesday, December 9, 2015

Grey's Anatomy: Disability Representation Series: 11x12 - The Great Pretender



This moment of representation is small, but I really like it.  In this scene, Arizona (an amputee as of season 9) is hanging out with her fetal surgery mentor, Dr. Nicole Herman.  Dr. Herman has a fast growing brain tumor, and is training Arizona via a lightening speed fellowship, so that all of Herman's knowledge is not lost if the outcome of the surgery is such that she cannot operate again herself.

In the scene below, Arizona laments the way her life used to be, saying, "I used to skate around this hospital," and Herman says, "Why don't you?"  Soon after, and not sounding sorry at all, she says, "Oops," realizing what did happen and why Arizona no longer wears her wheelie sneaks around the hospital.  I like the scene because of the organic way disability is brought up.  I like it because Herman isn't overly apologetic about an honest question, due to the fact that Arizona's amputation temporarily slipped her mind.  Mostly, though, I like it because Arizona lists a whole litany of things that are wrong in her life, her leg being gone is not among them.

This is, mostly, how it is (at least for me.)  People have this belief that because I'm disabled my life should be a certain way and if I have any problems they should automatically all link back to my disability, but usually, that's not the case.  I like that that's represented here.

This is a great scene by the way,  I'm so glad I found it so you guys could see it:



Tuesday, December 8, 2015

Grey's Anatomy: Disability Representation Series: 7x06 - These Arms of Mine



This is one of my favorite episodes of Grey's because it's so creatively done.  The entire thing is filmed in a documentary style, complete with dramatic narration, focusing on how the surgeons are coping six months after a mass shooting at the hospital.  Several were held at gunpoint at different times, some lost friends, and some were forced to wait with patients they could not save, while the patient died.  This will be the first time, I'll be detailing three scenarios in a single episode for disability representation:

Amputation/Arm Transplant:
A patient, known simply as, Zack, is paged to the hospital because he has been matched with a new pair of arms.  Four years ago, Zack lost his arms in a logging accident and they have been searching for a match for him for two years.  His wife, Nora, talks quite a bit about all the ways she adapted and helps her husband with everyday tasks.  Zack is played by actor John Lacy who is not an amputee.  Though not surprising to me, it is a little disappointing.


The scene above is quite graphic as it contains quite a bit of the arm transplant surgery itself, but toward the end, you can see Zack with his new arms.

Tracheal Tumor/Tracheal Transplant:
Nine-year-old Lily Price is admitted to the hospital with difficulty breathing due to a recurrent tracheal tumor, blocking her airway.  She soon has to be intubated, and pediatric surgeon, Alex Karev, goes from being annoyed by her tendency to blast preteen music from her room, to taking her under his wing.  He even keeps an eye on her while her mother is stuck at work, three hours away.  Eventually, fellow pediatric surgeon, Arizona Robbins, comes up with the idea to grow Lily a trachea with a mixture of her own cells.  We later see her operation was a success, due in large part to Dr. Karev all but living at the hospital for months, to be sure the trachea was growing all right in the lab, remained irrigated, etc.  Lily later invited Dr. Karev to come and speak to her fourth grade class.

This is one of the few situations where I can understand not having an actor with a particular medical complication, as Lily's type of tumor was extremely life threatening. I've always liked this aspect of the episode, because Dr. Karev really looks out for Lily.  He even urges the documentary camera crew to back off when she is upset she can't bring her I-Pod into the MRI machine with her, as seen below:


PTSD:

While obviously focused on the patients, Grey's Anatomy has always been about how they affect the surgeons.  As stated earlier, the entire episode takes place just six months after many of the surgeons were held at gunpoint.  At this point in season 7, we can gather than several of them have been diagnosed with PTSD.  In particular, when plastic surgeon, Jackson Avery, gets trapped between two sets of doors during a false triggering of the hospital's new security system, he is instantly nervous and his attention is on how to get out, and not on his patient, who codes while trapped with him.  Avery is forced to do CPR, all the while calling to a fellow doctor, "I need to get out of here!" and "I need to get out now!"  When the doors are finally opened and Avery is free to leave, he cannot seem to stop himself from continuing CPR.  Afterward, he angrily kicks over a cart in an empty room, and blankly addresses the camera, saying, "It's been hard.  I lost some friends that day."

I have always loved all of the complex ways the show has portrayed the effects of PTSD on multiple people.  It does not present the same all the time and I really appreciate that.  Throughout the entire series, the writers do an incredible job portraying this particular aspect.  Though I was not able to find a full clip of Jackson trapped between the doors and performing CPR, you can see a small clip at :20 in this promo for the episode.  (The promo is so good!)




I'm excited it's my turn to pick tonight, but I have no idea which episode I'll choose!  Especially after Tara picked such a great one!

Monday, December 7, 2015

Grey's Anatomy: Disability Representation Series: 2x04 - Deny, Deny, Deny



Yesterday, I picked season 2, episode 4, Deny, Deny, Deny just because sometimes it's good to see a random episode.  At this point all the surgeons were still interns and the amazing Miranda Bailey was their resident.

In this episode, Bailey introduces Meredith to her longtime patient, Jeremiah Tate, a 26-year-old with Cystic Fibrosis.  Jeremiah was one of Bailey's first patients during her intern year, and she knew nothing, at that point, about treating CF.  Bailey and Jeremiah have a warm relationship and it's clear Bailey really cares about him.  Jeremiah admits to having some pain, then to having seizures.  He thinks his pancreatitis is acting up again.  Bailey asks him where his parents think he is this time, and he says, New Jersey.  Meredith is shocked that Jeremiah hasn't told his parents where he is or that he's sick.  Bailey responds that he understands the reality of his condition but chooses to ignore it.  That "denial works for him."

It turns out Jeremiah will need exploratory surgery.  This is difficult because without it he will likely go into multisystem organ failure, but his body doesn't handle anesthesia well either.  If they don't operate, he will die, and if they do, he has a chance of still dying.  Jeremiah seems at peace with needing the operation, having lived with CF for 26 years,

Just before surgery, Jeremiah appears to be struggling more, and fights to even sit up.  Bailey's explaining paperwork to him.  He signs D.N.R. (Do Not Resuscitate) papers and tells Bailey, "You should probably call my parents."  Bailey responds, "Call them yourself when you walk out of here," and both smile.

In surgery, though, Jeremiah's body seems to be shutting down.  Despite the D.N.R. and a fellow doctor's warnings, Bailey performs C.P.R. on Jeremiah for several minutes.  She eventually calls time of death.  And later, Bailey is the one to call Jeremiah's mother and tell her he has died.

I'm not sure how I feel about this storyline to be honest.  On one hand I always prefer the doctors to care too much rather than not enough, but the fact is that Bailey didn't honor Jeremiah's wishes.  So this one's probably going to stay in ambiguous territory for me, which is annoying, as I have a very black or white/right or wrong personality.  Also, I'm kind of bummed I wasn't able to find video of Bailey and Jeremiah for this post.

We'll see what I get out of whatever episode Tara picks today.

Saturday, December 5, 2015

Grey's Anatomy Disability Representation Series Master Post:

2x04 Deny, Deny, Deny

6x10 Holidaze

8x24 Flight

10x11 Man on the Moon

11x12 The Great Pretender

Grey's Anatomy: Disability Representation Series: 6x10 - Holidaze



So, I'm starting a new thing.  Since I love Grey's Anatomy so much, (and I watch it all the time anyway) I'm going to share my thoughts on disability representation in whatever episode I watch.  Today, in honor of the upcoming holidays, I watched Holidaze.

In this episode, 6-year-old Nicholas Jacobson is admitted to the ER with a persistent severe nosebleed caused by an inoperable AVM.  Derek (neurosurgeon extraordinaire) operates initially and then discovers he cannot access the AVM to treat it appropriately because the hospital doesn't have the equipment for a nasal cavity that small.

At first, Derek is defeated, but not down and out for long.  Soon he, pediatric surgeon Arizona Robbins and plastic surgeon Mark Sloan ask Chief Webber for their Christmas bonuses.  They plan to use them to fund the teeny tiny equipment themselves.

But there's a problem.  There are no Christmas bonuses this year.

There is a brief pause before Derek says, "I write a check.  How much?"  Arizona quickly agrees to split the amount and Mark follows suit, each of them covering a third of the massive expense out of their own pockets.  Derek, Arizona and Mark not only fund the equipment, it's also up to them to make it, as they are on a serious time crunch.  (Nicholas has been readmitted with another uncontrollable nosebleed and is only hanging on because Arizona is transfusing him until all is ready.

Nicholas nearly has to be intubated, but the equipment is ready just in time and instead they bag him until he gets to the OR, where Derek is waiting to clip the AVM.  Below is video of that amazing moment:


I love this storyline, and the representation here, because it shows how surgeons go above and beyond to save a life.  Simply letting Nicholas go home and bleed out is not an option.  They fight for him. This particular aspect of disability representation is very significant, and personal to me.  It matters that the doctors didn't throw in the towel.  It matters that they fought for this little boy.

I'm normally such a stickler for realism, and I'd hazard to guess there are aspects of this storyline that weren't particularly realistic, but I don't care.  I care that they didn't stop fighting for a kid when all seemed hopeless.  

I care that saving his life was the top priority of these doctors.  

Friday, December 4, 2015

In The Time Machine

Yesterday, I found videos of Tara and I recovering from major surgery we had at 10 years old.  

The first is footage taken by Tara's 5th grade classroom teacher.  Mine appears on camera, sitting between us, and acting as interviewer.  

We were 2 weeks post surgery at this point (a week of which had been in the hospital.)  This was taken in January of 1992.  The videotape was meant to be a go-between for school and home, to let the kids know we were still a part of the class, and to let us feel like we were still a part of them:


video

The second video was taken by Tara's and my great grandpa, who loved to videotape everything we grandkids did when we came to visit.  The same was true when they visited us at home while we were recovering.  The second video was taken on February 6, 1992, almost 7 weeks post surgery:

video

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

We've been there, too, friends.  You're not alone.

Tuesday, December 1, 2015

Like Looking in a Mirror

So, last week, a pretty amazing thing happened:  a friend and her family were in town for Thanksgiving and they stopped by to visit.  I do have friends over from time to time.  That's not the amazing part.  That was the fact that this friend brought her elementary school aged daughter along, who also has CP.

It might sound strange that having lived in accessible housing for most of a decade that I don't have disabled friends over (aside from the people who live in our building.)  The fact is, I don't have many disabled friends - and certainly none that can just pop over whenever they would like to visit from several states away.

The fact that this little girl could easily walk in our front doors, our apartment itself, and all around inside, without being impeded by narrow doorways or steps of any kind was pretty amazing to see.  I regularly appreciate the access my apartment provides, but I rarely get to see it enjoyed by a visiting friend.  One who was able to take her walker inside and not bump it against anything.

Aside from appreciating the accessibility of our apartment, though, there was something so awesome about being able to talk to another family connected to disability.  I had not previously realized just how exhausting social interactions were for me simply because they required a lot of effort.  Trying to think of something relevant to offer to the conversation.  Trying to relate to a friend's story that centers around a lot of physical activity when most of my hobbies center around media.  I read, and write.  I watch a lot of Grey's Anatomy.  Not a lot of my friends desire to talk deeply about a book or a TV show.  But our new friend and her daughter did.  They love Girl Meets World and the movie Elf.  We can give each other book recommendations and analyze the content for as long as we want.

It was also notable because for one of the first times I can recall, my sister and I had something to offer.  Many friendships, for me, seem a bit lopsided, because I am always needing friends to come to me (as it is much easier for me to remain in my own space where I can go everywhere versus trying to navigate somewhere less accessible.)  Friends come to me and I feel like there isn't a lot of give and take.  There is a lot of take (from me) and a lot of give (from them.)  This time, though, we could offer advice and insight for this sweet mother-daughter duo, and it felt great.

One of the coolest things I have found about having CP is that it offers an automatic connection to a community - even down to our physical features.  Look at two people with CP and you will see similarities.  We are cut from the same cloth.  We are connected to each other.  And watching this little girl was honestly like looking in a mirror and seeing myself at her age.  From small things like the way she sat on the couch or perched on the back of her walker, to big things like the fact that she used a walker at that age, like I did.

Not to mention, of course, to be able to really relate to this girl about her experiences specific to disability was pretty monumental.  Growing up, I had no disabled mentors.  My parents didn't have any disabled friends.  (I don't fault them for that.  In fact, it wasn't something I even thought about until a couple of years ago.)  But being able to be that for someone else is great.  Whether she ends up wanting my input or not remains to be seen, but just the fact that the connection has been forged, I think, is a step in the right direction.  I think it's so important for disabled kids to be able to have connections to disabled adults.  To be able to ask us "Did this ever happen to you?" in the same way it's great to be able to offer suggestions to her mother about adaptive equipment around the house.  It's something meaningful, and something that can really make a difference in a family's life.

Meeting this new friend and her daughter in person offered a connection and an ease of interacting that I have rarely known, and I am so grateful for chances like these, to get to know people in my community.  Honestly, connections like these are my dream.  I have wanted so much to create bridges between parents of disabled children and disabled adults.

I think, together, we may have just built our first bridge, and I am thrilled about it.

The hair and the clothes may have changed in the 25 years since I was this little girl's age, but the resemblance between us was so uncanny.  By far, one of the coolest things I've ever witnessed.

Monday, November 30, 2015

Book Review: Me Before You by Jojo Moyes




A few days ago, a friend recommended I read this book.  She said it featured a character who was disabled.  So, my sister and I checked it out.  We finished the book in two days.  There were good aspects, but largely, this review is going to be cautionary.  Spoilers will be included, so if you don't wish for the plot to be given away, please click away now.

I found the plot fairly predictable: Lou, a young, financially struggling, able bodied woman, who lived a fairly predictable and safe life goes to work for a disabled, rich man, Will.  Actually, she goes to work for the man's mother.  He is barely seen for the first several chapters, except pre-injury.

From early on, I braced myself.  There were ableist comments from Lou's family and friends when they learned she would be taking on a carer/companion position for Will.  They speculated about his physical functioning, and joked inappropriately about him.  When Lou started working for Will's mother, Lou had a disconcerting habit of referring to Will as "the wheelchair."  (This did get better throughout the novel, thank goodness, but the fact that it was there at all was extremely off-putting.)

Everyone in Will's life, from his mother to his main nurse to Lou, were horribly presumptuous, and had horrible habits of not asking Will what he would prefer, but instead making assumptions.  To me, Will, a character who was living as a recent quadriplegic, had reason to be snarky and short, but he was made out to be unreasonable, problematic and automatically othered.  The main narrator in the entire story was Lou.  Lou is made out, for much of the book, to be the able bodied savior.

At their very first meeting, Will makes a very strange show of groaning and making all kinds of noises to try and throw Lou off.  I found it strange and out of character for a 35 year old grown man to do something like that.

When Will intentionally finds a way to break photographs of an ex girlfriend and best friend who had since gotten together, Lou takes it upon herself to try to fix the frames.  She doesn't seem to take his actions into account whatsoever.  But even more troubling, Lou never reads the binder of information regarding Will's medical needs.  She lacks a basic knowledge of paralysis and she repeatedly blatantly ignores Will's lack of consent.

Lou regularly equates Will with Thomas (who is Lou's four year old nephew.)  Will has no access to outdoors.  Will's mother is frighteningly dehumanizing when she speaks of her son - calling him a "thing."  We come to realize that Will's mother hired Lou in a last ditch effort to convince Will to live.  Because Will wants to go to a special Switzerland clinic where assisted suicide is practiced.  Will's mom says that Lou is "the only only one who can get through to him." Will's father is worse, wanting Will to go to Switzerland and choose to die so that he, himself will have the freedom to leave his wife.  Horrifying.

In an effort to show Will what he has to live for, Lou organizes outings for him, but she discusses these outside of Will's presence.  When she does bring the idea up to him, she does not allow him to object, but takes him out anyway, where they have an awful time, and Will isn't even interested in what the activity was to begin with.

Lou's lack of professionalism was stunningly neglectful.  She gets too drunk to be reliable changing his catheter (twice!) causing Will to get a massive infection that could have easily killed him.  But this is brushed under the rug by the author, couched in a "but they had a good time" sense.  On their final trip, romance has started to blossom between Lou and Will, and Lou naively believes she has changed his mind.  He tells her she isn't enough for him.  He is still planning to follow through with his plan.  Instead of maintaining the barest modicum of professionalism, Lou first leaves Will stranded on the beach in her anger.  This is brushed past by the author (we literally never know how he gets back to the hotel.)  She even refuses to feed him on the flight back home.

I find it troubling, to say the least, that a story like this was pitched as a romance, or that so many who read it felt that Lou and Will would have been remotely suited for one another when she couldn't even be counted on to see to his basic needs when her emotions got in the way.  Another book about why a disabled character doesn't think their life is worth living isn't something I think that's remotely needed.  It reinforces all the harmful stereotypes:  that disabled people exist only to teach lessons to able bodied people, that we have more value dead than we do alive.  We got literally everyone else's perspective who mattered in this book: Lou for most of it, but we also heard from her sister, from Will's parents and Will's primary nurse.  Who did we never hear from?  Who never got a chapter from his perspective?  Will.

This book being authored by an able bodied person does it a great disservice, in my opinion.  Because there are things that get missed.  There was a scene where Will was given a cup of a certain height and a straw of a certain height which allowed him to drink from it unassisted.  The author (as Lou) commented that this was a "small thing," when a disabled author would know that independence for us, is no small thing.

Ironically, the single redeeming quality in this book was the ending.  Will ends his life on his own terms, not being talked out of it by an immature, naive Lou.  He was able to take control back of his life in the only way he could.  While I don't support that narrative, nor what harm it causes my community, in making it Will's own choice, it was important that the story ended the way it did for him.  I didn't appreciate how his life and death "liberated" Lou and made her more able to embrace things in her own life.  Will's life had value because it was his life, not because she had epiphanies from simply existing around him.

There is a sequel.  I don't plan to read it.

Friday, October 23, 2015

A Response to The Cerebral Palsy Foundation's #JustSayHi Campaign from Someone With CP

When I first saw news about this campaign on social media yesterday, I was flummoxed:


Now that I've had time to consider it more, I feel even more strongly about speaking out about the problems this campaign exacerbates.  I'm sure it was started with the best of intentions, but the bottom line is that it does nothing but widen the gap between people with CP and those without it.

Unless you are an ultra friendly person, who genuinely does greet everyone you see with a "hi", something like this is singling us out unnecessarily.  (And as Emily Ladau so brilliantly pointed out in her article #JustActNormally - A Response to The Cerebral Palsy Foundation's #JustSayHi Campaign:  ""If you swapped out disability for any other appearance-related identifier, how would this campaign go over? ‪#‎JustSayHi‬ to Asian people. #JustSayHi to people with red hair. #JustSayHi to people who look like they weigh more than you do.")  No one likes being singled out.

Having CP for me means second guessing people's motives a lot.  From the time I was very young, I was aware of the fact that some people treated me differently because of my CP.  This campaign makes me keenly aware that now, when I go out, and someone does something as innocent as greeting me, I'll wonder, "Why are they saying hi?  Is it just a greeting or are they doing it because of that campaign?"  I don't want to spend time second guessing why people are talking to me.

Here's the honest truth:  if I'm out shopping, or with friends or family and I don't know you?  Chances are, I just want to be able to carry on with what I'm doing and not be worried that someone I don't know will seek me out to #justsayhi in order to "start a conversation" with me.  Plus, I can't shake the feeling that the whole "start a conversation" business is actually an in to ask really invasive questions.  I don't want that.

I hate the fact that a campaign like this even exists, to be frank.  The idea that the general public needs to something like this to teach them how to interact with people like me does nothing but make me feel like I am difficult, different, other, and separate.  In reality, I am just a person.  Just a woman.  Yes, I have CP.  Yes, my disability is a huge part of my identity.  But I don't want people seeking me out solely because of that identity.  It's patronizing.  It's condescending.  It's dehumanizing.  Please, just don't do it.

If you want to talk to me, do it.  I'm a pretty friendly person.  Ask me what I'm reading.  What I think of the latest episode of Grey's Anatomy.  What I'm passionate about.  What I love about my family.  About my friends.  But talk to me because you want to get to know me, not because I have Cerebral Palsy.

And not because of some campaign.

Wednesday, October 7, 2015

World CP Day

Today is World CP Day, which is all about making the world better for those of us with CP.

Having CP does come with some perks.  First and foremost, a great community of people who are living with it, too.  Our shared experiences with it.  Our particular facial features (I like to call it CP Face) which are often seen among people with CP.  We have awesome transportation (seriously, let's hear it for Greenie, my wheelchair.)

As World CP Day is about making the world better for us, here are a few things I'd like to see improved upon:

Awareness:  Look up Cerebral Palsy on your own time. Learn about it.  Realize that having CP is not a tragedy.  It is not something to be overcome

Access:  This goes beyond physical access (which, of course, is needed and awesome) and extends to conversations about things that concern those of us with CP.  Don't shut us out of those conversations.  Don't shut us down because we are not saying what you think we should.  We are the only ones who can speak for our own experiences as disabled people.

Ableism:  Telling someone with CP "I've never seen you as handicapped", pushing us without permission, or demanding we educate you are all forms of discrimination against disabled people.  Extend to us the same common courtesy you would to a nondisabled person.  We deserve the same respect.

CP Friends, celebrate yourselves and each other today!  Happy World CP Day!


Monday, September 28, 2015

Question: Do you ever have trouble with your feet and lower legs swelling?

I haven't, actually!  The only thing I have trouble with is my legs feel cold a lot.  Gotten better since getting a couple pairs of legwarmers.   But elevating your feet and looking into those support stockings sounds like a good start.  The only thing I can think to recommend is a good Google search, and if things don't improve in a reasonable amount of time, perhaps, see your doctor?  Sorry I can't be of more help with this.

Updating

If you're here a lot, you may notice that the little green bar along the top of my blog has changed some.

I've added a 'Home' button so you can easily find your way back if you are on an individual post.

I've also added an 'About Me' section (what was previously my No Shame Day post, which, I feel, gives a good summary of me.)

You'll also see a section called 'Published Works' where you can see my work in other places, outside of this blog.

'Favorite Posts' still exists (and has now has Tonia's Big List..." and "Do's and Don'ts' linked there.)

And finally, the 'Contact Me' button will take you to my Tonia Says Facebook page, which is the easiest way to get in touch with me.

Sunday, September 27, 2015

Tuesday, September 22, 2015

What You Need to Know About Blogging About Your Disabled Kids

It's only been a couple of years since I began my journey as a disability advocate, and in those two years, my eyes have been opened to a big problem: Parents crossing the line when blogging about their disabled kids.

My only saving grace from this, personally, is that the internet didn't exist in my house growing up until I was 17.  So, for nearly all of my childhood, even the possibility of sharing about myself or my sister to the masses was simply not an option.  Add to that my mom's reluctance to even be tagged in pictures on Facebook, much less share family's personal business with anyone outside the family and my grandma only ever complaining about very minor things unrelated to my sis or I in a private diary, I have been in the clear.  The only sharing about me is done by me.  

Other disabled people, though?  Not so lucky.

Now, I know what you might be thinking:  "What line?  Where is it?  No one told me there was a line!"

Well, as the previous acronym used in What You Need to Know About Pushing Someone's Wheelchair Without Permission was so useful, here is another one to consider before you blog about more personal aspects of your disabled child's life:  CARE.

I know parent-of blogs are for other parents of disabled kids, and they are focused on how your child's disability impacts you.  However, for these guidelines, parents will need to step aside and allow the disabled person to be your focus.

C - Consent
verb
  1. 1.
    give permission for something to happen.

Did the disabled person in your life give consent to have this personal information shared with the wider world? If you are writing about us, let us read it.  Let us tell you whether or not we are comfortable with you sharing it with strangers or not.  Keep in mind, very small children cannot consent, and disabled people with intellectual or other developmental disabilities may not be able to consent in a way that is readily understood.  In this case, even more caution is needed.  Think about yourself at a similar age, and what you're about to share with the whole electronic world.  

A - Apt

adjective
  1. 1.
    appropriate or suitable in the circumstances.

Is your blog the appropriate place to share that your 18-year-old pees in the bathtub?  Or that your 12-year-old holds their bowels until they have an accident because it's the only thing they feel able to be in control of?  Nope.  Probably best to save those types of things for private journals, or personal messages to a family member or a close friend who knows you and your circumstances very well.  Is your blog the appropriate venue to share that you feel like ending not only your life, but your 15-year-old's as well, because their behavior is just too difficult?  That would be one for your therapist's office.  (Seriously, if you feel like this, make an appointment with your mental health professional ASAP.  Don't blog about it.)

R - Respectful


verb
  1. 1.
    to act in a way which shows that you are aware of (someone's rights, wishes, etc.)

Ask yourself, does this post, or this blog, respect my child and their dignity?  Does it respect my child's community?  Posts that detail a doctor offering an abortion after a baby's in utero diagnosis - and detailing how - after that moment you did not feel you were carrying a baby, only a diagnosis?  These are crushing to read as a disabled adult in your child's community.  Posts, videos, or pictures detailing your child's autistic meltdown or shutdown?  So disrespectful.  Pictures of your children in vulnerable positions (distressed or in pain after a surgery?)  No.  A photo of your school age child or teenager in just a diaper, or bra and undies?  Unacceptable.  Posts about how it's like your NICU baby (who is alive, despite medical complications and premature birth) died because they are not home with the family?  Break my heart, and I hope that child never finds that post when they grow up...  

E - Edifying


adjective
  1. 1.  to teach (someone) in a way that improves the mind or character.

Write your blog with your child's dignity, personhood and self esteem at the forefront of your mind.  To help with this, let me give you an example of a blog post from a parent's perspective that is not meant to edify:

Sometimes, being a special needs parent is really hard.

This morning, I got up to get all 4 kids out the door for school - my girls with CP - to 4th grade, and my boys to kindergarten and preschool.  They all caught their buses, and I thought I'd have a couple of hours to get the kitchen back into shape, grab some breakfast, throw some laundry in, clean the house and maybe run to the store before my youngest got home at 11:15.

But the kids were barely gone an hour before the phone rang.  It was my daughters' school.  One of my twins (Jessie, who's CP is more severe) had an accident right after getting to school.  She's been toilet trained reliably since she was a toddler, so this caught me off guard.  It made me so frustrated and upset.  I see all the other 9-year-olds and I know none of them are still having incontinence issues, especially at school.  I hid my frustration...and let's face it, my anger (none of the other moms in the neighborhood have to deal with this!  Their 9 year olds are playing sports, going to the park and doing all the things my kid can't do.)

She was so embarrassed - almost crying, but kept it together - and was very quiet the whole way home.  She didn't say much to me as I helped her out of her dirty clothes and into the tub.  I don't think she's sick, so that's something.  I'll close with this picture of her all cleaned up and watching some TV with her little brother.  Still a little down but always inspiring.  I can't imagine living with a disability every day like she does.  I don't think I'd make it.  Sometimes I feel so guilty she can't have a normal life, though.

Please tell me some other CP-moms relate to this...

...versus one that is edifying:

This morning, I got up to get all 4 kids out the door for school - my girls with CP - to 4th grade, and my boys to kindergarten and preschool.  They all caught their buses, and I thought I'd have a couple of hours to get the kitchen back into shape, grab some breakfast, throw some laundry in, clean the house and maybe run to the store before my youngest got home at 11:15.

Unfortunately, the girls' school called about an hour after the bus dropped them off.  Jessie had to be picked up.  No details, because her privacy is non-negotiable.  Suffice it to say, she had a rough morning, and is home now, trying to unwind a bit and watching some cartoons with her little brother.

Sometimes, being a parent is hard.  I'm not sure if today was a reality check or if it was just a glitch, but it's tough to see any of my kids having a hard time.  Let's face it, it's tough to be a mom some days, and to know what to do.  It's hard to have to drop everything, when I really hoped to get a shower and maybe catch a few minutes of Kelly and Michael, in between loads of laundry.

Guess it'll have to sit in the DVR a while until life calms down...

I sincerely hope this is something parents take on board and feel free to use as a resource when blogging about your disabled kids.  Until next time, here's my face, bidding you a serious farewell:



Friends, what is something that your parents or caregivers have done that let you know they care?  Sound off in the comments!

Sunday, September 20, 2015

3 Things Disabled People Aren't Required to Provide The Nondisabled Public

1.  Education:
"How can those without a disability be educated if those with the disability feel that it is not their job?"  

Many times, we, as disabled people are looked upon to educate the people around us (at their demand.)  The reality is, we do not exist to educate the nondisabled population.  How can you be educated if not by demanding a disabled person give you an answer to your question?  You can Google, searching for resources specifically written by disabled people.  The information is out there, if you choose to look for it.  If we choose to share information about our community, that is one thing, but we are in no way required to educate you.  (If you are looking for a place to start, try Tonia's Big List of Resources for Learning About Disabilities.)

2.  Explanation:
"Why are you in a wheelchair?"

I can't count the times that I have been out, and been suddenly questioned in this manner by someone I don't know well, or don't know at all.  By asking questions such as these you are demanding to know someone's medical history, which is extremely personal, and not for public consumption.  The existence of a wheelchair, crutches, a walker, a trach, even a limp, is not an invitation to ask this question.  If you have a family member or friend who is disabled and they bring it up with you, then feel free to listen.  Follow our lead with this.  If it doesn't come up in conversation, assume it's off the table.

3.  Inspiration:
"Are you taking your daily walk?  To inspire me?"

I walked out of my apartment earlier this summer to the above question from someone who lives and works the accessible housing where I currently live.  The question caught me so off-guard, I could not think of a response (and because I was concentrating on walking and not tripping or falling.)  But what I wished I could say was, "No, I'm actually walking for me and my health.  It has nothing to do with you."  In short, disabled people don't exist to provide inspiration to nondisabled people by doing humdrum, everyday things.  Looking at us in this way is reductive and damaging.  We are whole, complex people, not objects nondisabled people can measure their own suffering against.  We have days when we're crabby.  Days when we're frazzled.  Days when we are greedy, selfish and mean.  We are not one-dimensional,  and perpetually sweet or positive.  We also have days that are awesome.  We deserve to experience both extremes.  We deserve to be able to live our lives without being looked upon as objects of pity or inspiration.

So, what can you say when you see us out?  Nod, or say hello.  The same as you would anyone else.  


Disabled friends, how do you wish the public would interact with you?

Saturday, September 19, 2015

What You Need to Know About Pushing Someone's Wheelchair Without Permission

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

I froze.

I couldn't speak.

This man spoke Spanish, and I had studied it all four years in high school.  I could understand much more than I could speak, but at that moment, my foreign language comprehension was stalled.  That is, until I heard the word salida.  I knew that meant "exit," and my panic increased.  We were headed for the doors, then outside and then, who knew where?

Luckily one of the girls I was traveling with also had a passing understanding of Spanish and caught the word, too, insisting "No salida!  No!"

This was not the first time I had been pushed without my consent, but it was the scariest. I have used a wheelchair since I was around seven years old.  Recently, I found myself a part of a conversation about this very thing.  A mother and her daughter (in a wheelchair) were at a store.  Mom was checking out at the counter, while her daughter took her time on her way to the front, looking at things in the aisles.  Moments later, her daughter appeared, being pushed by a woman neither of them knew.  Mom saw her daughter's frustrated expression and asked, "Did she ask you to push her?"  The woman responded: "No.  I just helped her, and brought her to you."

While most of the people who chimed in regarding this discussion recognized how wrong it was, a few did not.  The fact that the random woman was "helping" a school age child who did not need help or ask for it did not seem to matter.  What did matter?  The random woman's feelings.  She was only trying to help, after all, and she meant well.  Mom should have introduced the child to the stranger who pushed her without consent.  Mom missed an opportunity to educate.  The child should have been grateful.  Polite.  Should have said thank you.

I was even told that if we (disabled people) do not educate non-disabled people, how are they supposed to know it's not okay to push a person against their will?

So, non-disabled people who need a tutorial, here's a clever acronym for you to remember.  Whenever you see an unfamiliar child, teenager or adult in a wheelchair during your day-to-day life, and decide that we need your help:  STOP.

S - Stop
This is a pretty simple step.  Just stop, before you rush to our aid.

T - Think
Our wheelchairs are an extension of our physical bodies.  (In essence, our wheelchairs function as our legs.)  By rushing over, grabbing our chairs and starting to push us, it's as if you are physically picking up a non-disabled child, teenager or adult you don't know, and carrying them to where you assume they need to go.  Sounds pretty rude, right?  Pretty invasive?  It is.  It's jarring.  It's frightening.  Frankly, it's violating.  There's a good reason you don't see strangers physically transporting each other in this way - without warning, and without waiting for consent.

O - Offer Help
Come around, so you can see our faces, and say something like, "Do you need a push?"  This gives us the dignity and the opportunity to either accept your help, or turn it down.  (If we say or indicate "no", accept that and move on.  Don't insist on helping us.)

P - Push Only If You See/Hear Consent
If, and only if you see or hear consent, you are welcome to push us.  There is no reason for 3-year-olds or 6-year-olds to not have handlebars installed on their chairs just to dissuade eager pushers.  It's ridiculously unnecessary to suggest a 10-year-old should have a sign on the back of their chair declaring them independent, or insisting they will ask if they need help.  Just like there is no reason a 19-year-old should be pushed toward the exit of an airport in a foreign country without consent.  Being in control of our bodies and where we go is a basic human right.


Disabled friends, can you relate?  Have you ever been pushed without permission by a stranger?  How did it make you feel?  Sound off in the comments.