Monday, August 21, 2017

Like Looking in a Mirror, Part 3

Maybe someday the novelty of spending time around someone who is just like us will wear off...but it hasn't happened yet.  Maybe you were reading in the winter of 2015 when we first met, or the summer of 2016 when we read some poetry together.

This time, for the first (real) time, we got to travel to her.

[Image is: Us looking at my phone together]
We celebrated.  Laughed.  She took tons of silly selfies.  Showed me all about camera filters.  We took pictures together, and have 6 glorious seconds of video which shows all three of us screaming, "No!" when my sis realized she had accidentally hit 'video' instead of taking a picture.  

We talked about middle school.  About slime.  About Slinkys.  About whether our brothers also have CP.  (They don't.)  

Her reaction to finding this out was the best thing I have ever heard:  

"Oh.  That's sad."

She spent time trying to figure out which of us she is most like.  I think she's a lot like Tara in personality, and gait, but as for a physical resemblance, this kid could be my mini me.  It's so wonderful.

Just being together is so powerful.  There is nothing better than that feeling of belonging that comes with being where "your people" are.  If you get to do this all the time, notice it.  Breathe it in.  Don't take it for granted.  It is beyond amazing.

As amazing as the moment when, she said, very matter-of-factly:  "I don't know how to describe you guys.  Are you friends?  Or are you family?" 

Parenting Kids with Disabilities: Identity

Previously on Parenting Kids with Disabilities:  Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) / What Ableism Looks Like


Dear Parents,

When you think of your child's identity, what comes to mind?  Their color?  Their gender?  Maybe it's not something you think of much, because your child's identity - in many ways - is still forming.  But, if your child has a disability?  That's also an important part of their identity.

When I was growing up, I hated talking about CP.  I still have a hard time saying the whole diagnosis out loud (or writing it) because the first person I ever heard pronounce it correctly was a teacher that was super ableist.  I honestly just preferred that no one talked to me about it at all.  Ever.  Because I didn't identify as disabled.  I identified as nondisabled.  I was "just like everyone else" to me.  I was surrounded by nondisabled kids and adults.  It was the only example I had for what I thought people should be.  So I hated that I stuck out.  I hated that I had something that made me different.

It felt exclusively negative to me.  Like a giant eye staring at me because I was "that girl" with CP.  I never saw myself represented in the media, and if I did, the character was tragic.  One dimensional.  A plot device to pull at the heartstrings of nondisabled audience members.  Well, meanwhile, I felt like nothing and had to look away.

[Image is: Me at age 8.  I'm standing with new crutches but not looking directly at the camera.  My smile is uncomfortable.]
Chances are, your kid just wants to feel like they are not different.  And that's valid.  I think a lot of the reason why nondisabled kids have more self esteem and less mental health issues than kids with disabilities is that they are almost exclusively surrounded by people like them.  Where for us it's rare to find "our people."  And the people we do find, we might not have a lot in common with, so we resent being grouped based on disability alone.

If your child is uncomfortable talking about their disability, first and foremost?  Respect that.  Don't force them to talk about it with you (especially if you are nondisabled.)  Take their cues and let them lead the way.  Let them bring it up.

That doesn't mean never talk about it again.  Because that does imply shame, and if your child can't stand to hear the name of their disability spoken out loud, they are already feeling a lot of it.

So what can you do?

Try Speaking About Other Kids or Adults with Your Child's Disability...Positively:

Are you friends with someone who shares your kid's diagnosis?  Try talking about them in a flattering way:  "Yeah, he got the coolest orange wheelchair!" or "She told the best joke!  It was so funny!"  Hearing you build up others like them will take the pressure off your kid, and it will also allow them to see that "Mom or Dad or Grandma really likes hanging out with people like me."

Find Genuine Ways to Compliment Your Child That Don't Ignore Disability:

"Maya, You tell such great stories!  I love how you use your whole body to act them out!"

"Noah, You're so smart!  You're always figuring out ways to bring your toys with you!"

"Stephanie, You care so much about how other people feel.  You're a  great friend because you never want anybody to feel left out."

Find Examples in Media of Kids Like Yours Doing Something Your Kid Enjoys, Watch Them Together:

Kennedy YouTubing

Fox Sewing

Sami Doing Her Cousin's Makeup

Atticus Skating

Brooke Dancing

Sparsh Singing

Rhema on Bars and Beam (Gymnastics)

Give Your Kids Opportunities to Connect to Other Kids Like Them:

Growing to embrace their disability as a part of their identity is a process.  It will not happen overnight. But something that will help them get there is the opportunity to really connect to other kids like them.  Do you have a family camp you attend every year, geared toward families of kids with disabilities?  Great!  Did your kid make friends with the kid next door who has Down Syndrome like them?  Amazing!  Nurture that friendship!

Pay Attention to How Your Child Is Treated Both at Home and Away From You:

Is your child getting the message that you respect them?  Do your actions communicate respect?  We know how important it is to tell kids they are loved, but kids with disabilities also need the message that they are respected.  Unlike with nondisabled kids, respect is not necessarily a given.  So tell them:

"I respect you.  Your feelings matter.  You deserve to be treated in a way that makes you feel safe and happy to be you."

Make sure your child knows they can come to you if someone at school or other places is singling them out for their disability.  Ask questions, often, like:

"Do you feel safe at home/school?"

"Do kids (or brothers and sisters) treat you the same or different?"

"Does the teacher (or Mom, Dad, other family members) treat you the same or different?"

"What's fun at home/school?"

"What's not fun at home/school?"

But also know, they might feel sad and ashamed.  So pay attention to how they act when they get home from school or another location.

If your child is nonverbal, keep working to find whatever communication method will work for your kid.  Know that behavior is communication and receive it as such.  Stop in unannounced if you get a feeling that things aren't right.

Your Child Needs You to Be Okay With Their Disability:

So be mindful of how you talk about it.  (Does it mostly come up in conversation for being negative?  Does it come up in conversation solely as an obligation?  Do you feel bad your child can't do X?  Your child probably knows it.)

So practice discussing disability positively.  ("Your disability means you have connections to lots and lots of people who are like you.  They move like you/look like you/speak like you and that's great!  I love you so much that I'm going to keep looking until I find them.  Because I don't want you to feel alone."

Know that in many cases, if asked if we could get rid of our disabilities many of us would say no.  We don't want to get rid of the thing that plays such a big part in making us who we are.  We just want to get rid of the ableism surrounding us that makes us feel inferior for being who we are.

If you can accept your kids and their disabilities, parents, it's a powerful first step toward your child being able to accept themselves.

When I (Finally) Embraced Disability as a Part of My Identity:

As a teenager, I met a few friends with disabilities, but we only saw each other once, for a week out of the year, for three summers.  Otherwise, I kept with my trend of having exclusively nondisabled friends.  They would say things like, "I thought about calling you and Tara to come over this weekend, but we were all jumping on the trampoline and I didn't want you to feel left out."

(Um...so telling me that you were going to include us, but thought better of it, is supposed to make us not feel left out?)

At 18, I started attending a church, that initially welcomed me with open arms and made me feel accepted.  As soon as the third time I came, though, a well meaning woman told me she had a vision about me and God.  In her vision we were dancing, and she did not hesitate to tell me that I was "standing up."  That was the first time somebody there told me that my disability was not acceptable.  I chased that initial acceptance like a high for eight more years.  My self-worth was nearly destroyed in the process.

Around the time I stopped attending church, Tara and I moved into accessible housing.  A place where all of our neighbors are like us.  And while we were not friends with all of them, we did get close to one, who is now our neighbor across the hall.

It all really changed, though, when I started this.  Blogging.  Writing about CP and how it impacted my life.  Because of this, I got to connect with parents like you (some of whom have kids like I used to be.)  Because of this, I got to connect with other adults like me, who had the same experiences I did.  I got to make friends with people who accept me and truly love me for all of who I am, disability included.  Because they get it.

Because they're like me.

I sincerely hope that your child does not need to wait until their 30s to find this level of acceptance.  I hope this post helps you in your journey to both support and respect your kiddo as a whole, amazing human.

So that they can start loving themselves, ASAP.

Thursday, August 17, 2017

Review: The Fosters 5x06 "Welcome to the Jungler"

[Image is: The word CARE with other synomyms for it within each of the letters.]

JESUS, STEF AND LENA - KITCHEN:
Stef: Did you know that dropping out of school is illegal?  
Lena: California is a compulsory education state.  You have to go to school until you’re 18.
Jesus: What?  So you’re gonna arrest me?
Stef: If I have to.
Tonia:  Oh, perfect.  I’m so glad we’re starting off this episode with yet another threat of institutionalization. <– Sarcasm
Tara: Completely jarring.  Completely unrealistic.  Completely unnecessary.
Jesus: [Looking to Lena] Mama.  Seriously?
Lena: The only way you can drop out is if you pass a proficiency test.
Jesus:  Okay, fine.  Then I’ll just do that.  
Lena: Okay.  Then, you can take the test at school tomorrow.
Jesus: Great.  Can I go now? [Jesus leaves at Moms’ nod]
Tonia: This whole conversation is so strained, and Moms have Jesus practically backed up against the kitchen counter.  
Tara: So, we’re going from no school for months to a high-stakes proficiency test?  This is unfair even without factoring in the brain injury.
Lena:  Thank you.
Stef: Yeah.  I will be your bad cop any day, woman.  What if he passes the test?
Lena: He won’t.  He’s having problems with memory and comprehension.  The test is gonna show that and we can use it to make our case in getting him an educational aide.
Tonia:  Wow. Okay.  So according to some old college papers I found from an intro to SPED class where we learned about TBI, to be considered school-ready, Jesus would have to be able to attend to an academic task for 10-15 minutes.  This proficiency test?  3.5 hours long.  (With no accommodations, because Jesus has not even been evaluated yet.)
Basically, Moms are both abusing their power positions (Lena in education, and Stef in law enforcement) to manipulate Jesus into doing what they want him to do.
(Also, for reference?  We have seen Lena alter Jude’s proficiency test to get into Anchor Beach.  Knowing how far she was willing to go for Jude, when she had only just met him, it’s that much more painful knowing that Lena is willing to send Jesus into this test with no accommodations and zero time to study.)
She is trying to sabotage him here, and it sucks. 
Tara: They went right for the sabotage here, instead of having another conversation with Jesus.  They don’t want to deal with his feelings, they simply want him compliant. :( 
Also, just because Dr. Bayfield the orthopedic surgeon has a friend whose son has a 1:1 aide, this does not mean that Jesus definitely needs one.  At this point, he has not even been assessed yet.  Let the professionals decide this.
And it is all kinds of exploitative to use Jesus’s (at this point perceived) deficits against him to get the outcome you desire.  Moms want to intentionally overwhelm, overload and fatigue Jesus’s injured brain to strengthen their case for an aide. 
1) Jesus has not been in school for months.
2) He is given no time to study.
3) According to old-school SPED handout:
Regular classroom placement
- for students whose cognitive, physical and behavioral limitations have resolved, regular classroom placement can be an emotional support and represents a significant level of recovery.
-CAUTION: A return to regular classroom without any level of support should be done with caution and is not recommended as an initial placement.
^Essentially, this is what Moms are doing.
4) The goal of going back to school after a brain injury is initially less about proving knowledge and more about learning strategies and coping skills.  Academic success is not the point - not right away.
 Stef: A few days ago, you didn’t think he was ready to go back to school.
Lena: Well, a couple days ago, I hadn’t threatened to send him away.  I don’t think being trapped in the house is doing him or us any good.  
Stef: He can still refuse to go, you know?
Lena: Well if he DOES, I think you SHOULD arrest him!  I’m serious!  It’s time for a little tough love around here!
Tonia:  I’d settle for regular love around here, Lena.  Because instead of sitting down with Jesus again for another conversation and really hearing him out, you’re jumping to manipulation and threats of arrest???  
Also, this is a moment where having nondisabled writers on the show really comes through.  Why?  Because we know, based on what Lena says here that she is thinking about her previous threat to institutionalize Jesus, but we don’t see Jesus talking about or thinking through how Lena’s threat impacted him.  We get really obvious insight into Lena and her thought process as the parent, but almost none from Jesus, who the threat was directed at.
This is not something someone just gets over in a day.  Jesus will carry this with him for the rest of his life.  And I think it’s irresponsible (especially if you are going to include such egregious ableism as repeated mentions of shock treatment as a legitimate option and threatening your son with institutionalization for having a TBI) to not overtly convey the harm such words inflict on the people they are used against.
Tara: To continue with Tonia’s conversation about how we do not see how Lena’s words impact Jesus… I would argue that we are seeing the impact, to some extent.  What stood out to me in this episode was Jesus Being Good.  We saw no strong emotion from him at all, which is notable on this show.  To me, this could be misinformed writing - but it also could be a tried-and-true coping strategy of a person used to impermanence.  Making a conscious choice to be unaffected.  
Can we also talk about the fact that Lena seems to be ready for Jesus to go back to school because she is fed up with him?  :/
And regarding the whole arrest thing?   Jesus is more vulnerable interacting with law enforcement with intersecting identities as both an ethnic minority and disabled person.  Disabled people make up a third to half of all people killed by police.  The fact that Moms would so cavalierly discuss this seems super out-of-character.
JESUS AND GABE - YARD, WORKING ON THE TREE HOUSE:
Jesus: And now they won’t even let me see Emma!  Which is like, total bull!  Because besides this with you, and her, I have no life!  You know, I think what makes them so mad is that I’m not going back to school.  But I have a plan!  Why don’t we turn this into a business?  You know, making tree houses!
Tonia:  I’m glad Jesus has someone he can talk to about how he’s really feeling. With all the other kids at school and Moms at work, it’s easy to see why Jesus is feeling so isolated.  And with all this time to mull over what Moms said, it’s no wonder he’s coming up with alternate plans.
Also, Moms are so mad that Jesus isn’t going back to school, but, reminder that when Jesus was ready to talk about it, they kept ignoring him and putting it off.  They didn’t even bring it up with his doctor, which was their reason for putting off a discussion in the first place.
Gabe: Uh, I mean, shouldn’t you just finish high school?
Jesus: No, I can get my GED just like you did.
Gabe: Yeah, in prison.  Look, I wouldn’t do anything like I did.  I mean, I made a ton of mistakes when I was your age.  I think your moms are just trying to protect you, you know?
Tonia:  I actually really find myself relating with Gabe here.  I’ve been in that position where you care about a kid but you don’t want to say the wrong thing for fear of not being allowed in the kid’s life anymore.  That being said, Gabe, abuse does not equal protection.
Jesus: Do you think you made a mistake with Ana?  You know, like, not trying to be with her?
Gabe: Yeah.  Yeah, all the time.
Jesus: Do you ever think about about getting back together?
Gabe: [scoffs] She’s with Mike.
Jesus: Yeah, but they’re not, like, married.
Gabe: Here’s the thing.  Choices you make today can stay with you your whole life.  And as far as Ana goes do I wish it had been different?  Yeah, I do.  She was my first love.  Maybe the only one I’ll ever have.  But it’s too late.  And you don’t wanna end up carrying around all that regret.  Trust me.
Tonia:  The first person Jesus talked about in this conversation was Emma.  She is really on his mind here (and why wouldn’t she be, as one of the only consistent people in his life?)  Things undoubtedly feel really shaky with Moms right now and they have felt really shaky with Emma until recently.  Jesus is just trying to figure out what to do to keep the people around him there.  And not to leave, like they all seem to want to.
JESUS AND ANA - KITCHEN:
Jesus:  Ah, hey!
Ana: [covers her engagement ring]  Hi!
Jesus: What’s up?
Ana: Is, um, Mariana here?
Jesus: Oh.  Uh, actually no.  She’s…not home yet.  
Ana: [disappointed] Oh.  Okay.
Tonia:  It always strikes me as strange that Ana shows zero interest in talking to Jesus one-on-one.  (Same goes for Gabe and Mariana.)  It’s like, they will if they have to, but only if they have to.)  I can’t help but feel for Jesus here, especially as Ana doesn’t clarify she wants to talk to them both together, so it just comes off as her not wanting to talk to Jesus.  
It’s also more than a bit irksome that Ana has joined the ranks of people who are clearly uncomortable around Jesus.
Tara: To be fair, Jesus hasn’t been willing or able to build the kind of relationship Ana and Mariana have.  And some relationships are just awkward - not all bio parent/child reunions are perfect.
Jesus: Uh, can I ask you a question…about…Gabe?
Ana: Sure.
Jesus: Do you still, like, have feelings for him?
Ana: What do you mean?
Jesus: Well, I know you’re with Mike.  And he’s a great guy.  But IF you still think about Gabe.  Well, I mean, he…still thinks about you.
Ana: Uh…  How do you know that?
Jesus: He…told me.  He said that you were the only woman that he’s ever loved.
Tonia:  I’d imagine that every adopted kid plays the “what ifs” through in their heads.  And given that Jesus currently has “no life” other than helping Gabe and trying not to step a toe out of line so Moms won’t send him away or arrest him, it makes sense that he would gravitate toward playing matchmaker for Gabe and Ana.  He knows what it’s like not to be told the whole truth, too, so of course he wants the people around him to have all the information they need on a subject.  And I’d hazard to guess that, for Jesus, love is the most important subject there is.
[Mariana walks in from school, sees Ana]
Mariana: Oh!  What are you doing here?
Ana: I just was in the neighborhood and I thought I’d come by to say hi.
Mariana: [touched] Oh.  Well, hi.
Ana: Hi.
Tonia: Keep holding onto that engagement ring for all it’s worth, Ana.  A little awkward for the kids to see it now that Jesus has confessed Gabe’s undying love for you, isn’t it?
Also, it still touches Mariana (and Jesus) to have Ana stop by even if it is to just say hi.  Because it means they’re thought of.  And being thought of means they’re valued.  And that’s always going to matter to these two.
JESUS AND MARIANA - HER ROOM:
Jesus:  Hey.  Can I borrow your phone so I can text Emma?
Mariana: No!  I’m already in enough trouble because of you!
Tonia:  The implication here seems to be that Moms are checking Jesus’s phone to be sure he has no contact with Emma.  (As the last we saw him, after Lena yelled at him, he still had his phone.)
Also, Mariana’s “I’m already in enough trouble because of you” sounds a lot like “I’m already in enough trouble because you’re disabled.”  Because if Jesus had found out about the party pre-TBI and invited himself along, they’d both be in trouble, but Mariana wouldn’t be putting the blame back on him for having a seizure.
Tara: So, Mariana still has her phone after their night out?  But Jesus doesn’t have his or is on restriction?  
Mariana: Hey.  What do you think about Scariana Adams Fostgore?
Jesus: For what?
Mariana: My derby name.  
Jesus: Come on. Moms are not gonna let you do roller derby.  Not after what happened to me.  
Tonia:  Jesus speaks the truth.  I mean, we all remember Lena hyperly quizzing Tess and Dean about why they allowed Logan to play football with its high concussion risk.  Chances are very good that they are not going to sign off on Mariana being on the roller derby team.
[Brandon walks in]
Brandon: Hey, uh, so did you guys hear about Ana and my dad getting engaged?
[Jesus and Mariana make eye contact and stand in sync with each other]
Mariana: What?  Seriously? That’s so cool!  I mean…you’re cool with that, right?
Brandon:  Yeah, I-I-I guess.
Jesus: I wonder why Ana didn’t tell us?  She was here earlier. So, are you sure?
Brandon: It’s what AJ told me.  Oh hang on. [Brandon answers his phone, leaves the room.]
Tonia:  Once adopted siblings, soon to be step-siblings too?  Let’s play How Many Ways Can Three Siblings Be Related?
Tara: Yeah, this is odd.
Jesus: I wonder if Ana didn’t tell us because of what I told her?
Mariana: What did you say?
Jesus: That Gabe still loves her.
Mariana: He does?
Jesus: Yeah.  That’s what he said to me.  It’d be kinda cool if they got back together, right? 
Mariana: Not for Mike.
Jesus: Well, yeah, I know.  But I mean, they were each other’s first loves.
Mariana: Okay.  That doesn’t mean that they should be together now.  People rarely ever marry their first loves.
Tonia:  Mariana, your tone is really close to patronizing here.  Please stop.
Tara: It feels weird that Mariana is siding with Mike here.
Jesus: Some do.  As long as they don’t screw it up.
Mariana: Yeah, well, I want to have LOTS of loves before I get married.
Jesus: I don’t.
Tonia:  I kind of love how the traditional way this might play out is flipped.  Mariana wants to have lots of first loves and Jesus only wants one.  I can’t say I’d feel any differently if everything was changed - including me - and I had no control over any of it.  Especially since Jesus’s own relationship with his Moms is shaky enough that even they have threatened to send him away now that he has a TBI…
JESUS AND EMMA - SCHOOL HALLWAY THE NEXT DAY:
Jesus: Hey.
Emma: Hey.
Jesus: Look, I’m really sorry about last night.
Tonia:  So, I’m a bit slow on the pickup, but it took me until now (actually recapping) to connect that Jesus is on this train of thought with Emma and talking about “unless they screw it up” because he was afraid he had screwed it up by telling her he really didn’t want to see her anyway.  
Also, we do get the specific time reference here: Jesus’s fight with Emma happened last night.  That means Lena threatened to institutionalize him last night.  :(
Emma: Me, too.  I really want to be supportive…of everything.
Tonia:  This line had me waiting for “but I can’t.”  The “but I can’t never came and the “everything” seems to refer to Jesus’s TBI which is now, officially too much for everyone :(
Tara: Yes, look at her word choice here.  She wants to be supportive, but she’s not supportive currently.
Jesus [flirting]: You mean that?
Emma [smiling]: Yes.
[They kiss]
Emma [still smiling]: Do your moms know that you’re here? [whispers] Did you sneak out?
Tonia:  A few blessed seconds of cuteness and fun.  I’ll take it wherever it comes at this point.
Tara: I love these moments.
Jesus [laughs] No, I had to take a proficiency test.  So that I can legally drop out.  
Emma [clears her throat and looks away]: How’d…you do?
Jesus: Uh, good, I think.  
Tonia:  And just like that, the support’s gone. Did Emma think Jesus was apologizing because he came around to her way of thinking?  Is that why she said she wanted to be supportive?  Right about now it sounds like the conditional way everyone else is ‘supporting’ Jesus, which is heartbreaking.
Tara: This test is written as no big deal, but it is a huge deal.  182 questions (reading, writing and math) plus a writing task.  In 3.5 hours.  Unless you want to split up the reading and writing sections, and sit for another 3.5 hours.  We don’t know if Jesus chose to do this, but regardless, he seems to have a bounty of extra energy post-test.
Cognition takes work after a brain injury.  Attending to a task takes work.  Filtering can be almost impossible.  
I can tell you that for my first few weeks back at school (almost 2 months post-injury), I took one class.  An elective.  Choir.  Something completely non-academic.  And after that one 80-minute class period, I would be completely spent.  Exhausted.  Taking 4-hour-long naps.  
So, although Jesus looks none the worse for wear, the actual, real-life implications for taking a test like this the way he did are serious.  Asking him to take the test at this point was nothing less than abusive.  And doing so would have almost certainly hindered his recovery.
Jesus:  Um, but anyway.  I have something for you.  [Jesus takes out a small box.  Offers it to Emma.]
Emma: [laughs nervously and opens the box to find a wooden ring inside]
Jesus: I know it’s not fancy.  But I made it with Gabe.  
Emma [forces a smile] It’s beautiful.
Jesus [smiles genuinely]:  I wanted to give it to you as a promise ring.  You know, until I can get you something…nicer.  Emma, I don’t want to have any regrets in my life.  And I know that you…  You’re the one.  I want to spend the rest of my life with you.
Emma [is not smiling.  Keeps looking down and away.]
Tonia:  This is like, so devastating.  Because I’ve so been here.  So desperate to keep friends that I gave them things I put my whole heart into. 
It just sucks in this case even more so because the scene plays that Jesus (previously pretty dialed into people’s cues, even in earlier episodes this season) seems to be missing all of them here.  So the scene plays out and you are automatically led to feel sorry for Jesus.  In that he “just doesn’t get” that Emma isn’t on the same page with him.
When the reality is?  He likely can’t even face that possibility, because he needs this to work.  He just can’t face one more rejection.  So he’s pushing forward, and hoping that if Emma hears all of what he has to say, she’ll come around.
Tara:  He wants the certainty that at least one person loves him unconditionally.  That at least one person won’t leave.
Emma: Jesus, we’re only 16. 
Jesus: Well yeah, I’m not saying that we’ll get, like, married right now.
Emma: I’m gonna go to college.  Maybe far away.
Jesus: That’s fine.  I’ll go wherever you’re going.  I can do construction, literally, anywhere.
Emma: So much can change.
Jesus: Not if we don’t let it.
Emma: I want change.  I wanna grow and learn and–
Jesus: Well, good.  ‘Cause we could do all that together!
Emma [hesitantly]: Not if you drop out of school.  Education is extremely important to me.  And I [sighs] can’t really see myself marrying someone who’s willfully throwing that away. [Puts the ring box back in Jesus’s hand.]
Tonia:  Ugh, this is just painful.  Emma, break up with him already!  Not that I want you to, but it’s obvious you want to break up.  Don’t string him along.  Also what did Jesus say when you gave him the box back?  That’s a convenient place to end the scene, so you have the last word.
Tara: While I respect Emma’s values, I don’t agree with her saying that Jesus passing a proficiency test is the equivalent of throwing away his education.
JESUS AND LENA - KITCHEN:
Jesus:  Hey.  So, I’m not gonna drop out of school.
Lena: Hard test?
Jesus: Nah.  I mean…  Well, kinda, I guess.  But no, I ran into Emma, and she won’t marry me if I don’t finish school.  So, I’ll get assessed.  Get a babysitter.  Whatever it takes.
Tonia:  So, a lot of times, I look at things from a writer’s perspective.  From a storytelling perspective.  First of all, we have the writer’s lack of a disabled presence anywhere in that writer’s room.  Because seriously how many more times are we going to be subjected to Lena thinking that Jesus is just dumb as a box of rocks when really, he hasn’t even been assessed yet and went into that 3.5 hour test with zero prep and zero accommodations.
And secondly?  This just strikes me as lazy writing.  Not only have they managed to make the conflict between Moms and Jesus (a huge deal) a nonissue, this also, effectively, lets Moms off the hook for any of their gross behavior, (educational neglect, manipulation, and threatening Jesus.)
It has not escaped me either that the writers have skirted immediately addressing how Jesus feels about Lena’s threat of institutionalization from last episode, or the fact that she is still actively pursuing shock therapy for him.  That is just beyond irresponsible.  
Don’t allow yourself to forget that these things are happening.
Tara: The lack of a disabled voice in the writer’s room is glaring when Jesus’s response to a 3.5 hour test is that it was “kinda” hard.
And yes, totally agree with Tonia - so much of this episode is about what was not said, seen or addressed.
MARIANA AND BRANDON - KITCHEN LATE AT NIGHT:
Brandon: Has Ana told you guys about her and my dad yet?
Mariana: No.  I hope Jesus didn’t confuse her.  
Brandon: What do you mean?
Mariana: I guess Gabe told him that he still has feelings for Ana.  And then he told Ana.  I’m sure there’s nothing to worry about.  She loves your dad and she obviously said yes.  You know Jesus.  Ever since his TBI, he’s confused.
Brandon: Yeah.
Tonia:  Seriously, can we stop with the continued implication that Jesus doesn’t know what he’s talking about.  Even if it is to reassure Brandon, there are other ways to do it that are not claiming Jesus misunderstood something he clearly understood perfectly.  And Brandon agreed with her!  Come on, siblings!  Knock it off.
Tara: ^Dismissive ableism.  Presuming incompetence.  These dangerous notions that dehumanize the disabled make abuse, neglect and institutionalization okay.  None of this is okay.  
Do not let the media be your only source of disability education.  Read and watch content made by disabled people.  We exist as more than plot devices or inspiration p*rn.  We are just as human as you are.  See us.

Review: Mia Lee is Wheeling Through Middle School by Melissa and Eva Shang

So, it's a rare occasion when I get the opportunity to post a positive review on media here.  But believe me when  I say that Mia Lee is Wheeling Through Middle School is a book you definitely want to check out, especially if you have a kid who uses a wheelchair.  (Or, if you use a wheelchair yourself.  Or if you love a good story.  Basically, everybody could benefit from reading this.)

[Image is: several old books lined up on a shelf]
Mia Lee is brand new 6th grade student at the start of this book.  She has a best friend from elementary school, and she is pretty excited and intimidated by all of what sixth grade will bring.

This book is a rare find, in that, its protagonist is disabled and its written by an author with a disability - a middle school girl with Charcot Marie-Tooth disease, a form of Muscular Dystrophy (Melissa Shang) and her older sister Eva.  That authenticity carries through the entire story.  Because while we don't forget that Mia is in a wheelchair, the story does not center around it.  She's not a hero or an inspiration.  Accessibility issues are not nonissues here, as we are with Mia when she goes to a friend's house and navigates stairs.  She does not face ableism that is dropped or unacknowledged by the author.

Mia is a normal kid.  She stands up to bullies, and she also makes bad choices, too, like taking her aide's keys and seriously considering breaking into a locker.  She has a hobby that she likes a lot - making stop-motion videos.  She has friend problems.  She has crushes.  She has a mom that is sometimes overprotective, and with whom she clashes at times culturally.  (Mom speaks Chinese and Mia understands it well but does not speak it well.  Mom loves Chinese food, Mia doesn't.)  We always know how the ableism Mia faces makes her feel, and because of that, the reader never ever gets the sense that it's okay to treat someone the way Mia is treated at times.

This is a very real portrayal of being a middle schooler with a disability.  But it's also funny and light  She has a great relationship with her older sister, too, which was nice to see.

Seriously if you have a 9-12 year old in your life (but especially one with a disability) check out this book with them!  It's not expensive, and I'll even link you, so you know exactly where to find it:

Mia Lee is Wheeling Through Middle School

Monday, August 14, 2017

Parenting Kids with Disabilities: What Ableism Looks Like

Previously on Parenting Kids with Disabilities: Introduction / Accepting Your Child's Diagnosis / Helping Your Kids Accept Their Diagnosis / Accepting a Subsequent Diagnosis / Presuming Competence / Surgery / Adaptive Equipment / Public Interaction / Adapting / What You Can't See (Invisible Aspects of CP) 

Dear Parents,

Ableism.

It's an -ism lesser known
Less understood
Because it's less discussed.
So let's do it.
Let's talk about it.
This ableism -
What is it -
Exactly?

Ableism is
Discrimination
Against
Disabled
People.

Your kids
With disabilities
Face it every day.

It looks like
Someone mocking
Your child for how
Their disability
Makes them look
Or move
Or speak.

It looks like
Someone dismissing
Your child's word
Because their disability
Means society
Does not take them seriously.

It looks like a pastor
Taking away your child's mobility aids
And insisting
They walk without them.
It's when that pastor
Prays for healing -
For your child to be delivered
Of something that actually shapes
Your child
Into being who they are.

It looks like
A high school kid taking something
Away from your kid
Without consent
And leaving
Because they know
Your kid can't go after them
To get it back.

It's the aide in middle school who
Makes your child feel alienated.
Who reports back to you if
They do something the aide
Does not approve of.
It's making your kid feel
Like there is a double-standard
In place.
One for the other kids,
And one for them,
Because they're disabled.

It's the teacher in elementary school
Who denies your child ribbons on
Track and Field Day,
Because events need to be
Modified.
Because your child
Has a disability.
They offer stickers instead.
Your child feels slapped.
Degraded.

It's when a therapist mocks
Your child's walk.

It's when your child's "no"
Is disregarded.

It's when your child is called
Lazy.  Uncaring.  Inattentive.
When the reality is
Their disability is
Invisible.

It's when your child's adaptive equipment is
"Too heavy."

It's when your child's negative
(But completely valid)
Feelings
Are written off as a symptom
And not treated as legitimate.

It's when your child is regarded
As a list of symptoms.
As broken.  As damaged.
As flawed.
As less valuable.
As less than whole.

It's when your child is blamed
For an inability to control their bodies.
When their actions are viewed as
Misbehavior.  As intentionally
Aggravating.
When, in fact, they are trying
So hard, always,
To stay in control.

It's when a stranger asks "What's wrong with him?"
Or, "Did you know before you had him?"
Or says, "She's too pretty to be in a wheelchair,"
Right in front of your child.
Or pushes that wheelchair
(With your child in it.
Without asking.)
Without regard for the fear they are striking
In your child at that moment.

It's when media constantly paints your child
As a burden.
And being disabled
As the worst fate ever.

[Image is: Me, holding a copy of the book Me Before You, not smiling]


It is loud
Like your child being called
The R-word.
Like your child being hurt
For what they can't help.

It's quiet
Like your child being ignored
When they try to engage
Other kids
And even, sometimes,
Grown ups.

It's when your child
Can't prove they know something
So, it's assumed they don't.
It's when this assumption
That
"They don't understand,"
Is used as permission
To overshare and disrespect.

It's when your child
Is not believed
When they need to be
Believed.

So...

Celebrate your child
For the way adaptive equipment helps them
For their unique way of moving
For finding a way to communicate that works for them.

Take your child
With a disability
Seriously.

Know that supporting your child
And respecting your child
Are not the same thing.

Make sure your child
Experiences both
From you.

Because your child's words are
Valid.
They are
Valued.
They should be protected
And know
Always
That they are enough
And whole.

Believe in them
And believe
Them.

Friday, August 11, 2017

Review: Wonder by RJ Palacio

This book centers around 10-year-old main character, August Pullman, who was born with "something similar to Treacher Collins Syndrome" according to the author.  Auggie has been homeschooled since Kindergarten, and has done well.  He's smart and sweet, if a bit sheltered.

AUGGIE:

The first 20% of this book (I read on Kindle, so all I had to go by were percentages) was fantastic.  This was all from Auggie's perspective and it felt authentic. His perspective felt so true to life for me (as that kid who was different growing up.)  The stares and reactions he endured felt real.  I loved his closeness with his parents.  I loved his parents as characters, especially his mom, who felt especially real to me.  And did I mention?  Auggie has the sweetest old dog.  I pictured her like this:

[Image is: an old and super cute golden retriever in a wheat field.]
Auggie does okay in school but is super isolated and sad.  Kids tease him and no one will touch him.  Toward the end of 20%, August goes to school around Halloween, dressed differently than he planned to be - as something called The Bleeding Scream - covered from head to toe.  His friend (one of two that he has made thus far) does not recognize Auggie because he's not in the Star Wars costume he planned to wear.

Because of this, Auggie is just feet away when Jack says: "If I looked like Auggie, I'd kill myself," and laughs, with a bunch of kids who bully Auggie.

And at this point?  The POV switches and we get 5 other perspectives for the next 60% of the book. 

VIA:

We hear from Auggie's sister who talks about how hard it is on her to have Auggie for a brother.  (The author also somehow misspells trach "trache" and says this was in Auggie's mouth...um...trachs don't go there...)  Auggie's sister and her friends used to dress him up when they were young.  Auggie loved it.  The girls all thought Auggie looked like E.T...  (I know kids can be cruel but come on.  He's a child, not an alien.)

Auggie's sis has started at a new high school and no one knows about him there.  When she auditions for the school play and gets the part of understudy for the lead, she deliberately does not tell her parents about the show because they will bring Auggie.  When they do find out, Dad offers to come and Mom says she will stay home with Auggie.

Via throws a fit that both her parents will not come to her play.  Auggie asks: "Can I come?" and Via insists: "No!  You won't like it!" 

Auggie, by now, has caught on that his family is not telling him something and demands to know what they're lying to him about.  He screams:  "Tell me!  I'm not r*t*r*d*d!"  (The author has justified her choice to include this word because "That's how kids talk.")  I had heard her quote before I read the book and I assumed one of the other characters said it, not the main character with Not Treacher Collins Syndrome.)  A kid with his background would likely know - more so than the average kid - how much that word hurts.  I found it hard to believe he would use it, and offensive that the author felt the need to include it.  Especially in a children's book.

Auggie runs to his room, crying, and waits for his mom to come and follow up with him, which she does, usually.  He waits a half hour.  And then Via comes to his room and tells him he has to come quick, because their dog, Daisy is really sick and has to go to the vet.  Their parents don't think Daisy will live.  Auggie and Via have to say goodbye.

The whole fight becomes a nonissue as the kids hug and cry and say it was silly to fight.

OTHER PERSPECTIVES:

We heard from Justin, Via's boyfriend, who really did not do much except function as a plot device.  I have a sneaking suspicion he was only included because he had Tourette's Syndrome.

We heard from Summer - one of Auggie's few friends at school - how she sat with him at lunch the first day "because she felt bad for him."

We heard from Jack, who was singled out by the principal as a "nice kid" to show Auggie around, before school started.  We learn Jack balked at this initially, because when his mom told him about Auggie, Jack knew who he was.  Because Jack, his little brother and their nanny had seen Auggie out eating ice cream the previous year.  He panicked.  His little brother made a rude comment.  And the nanny gathered them up to walk away as fast as she could and then reprimanded them all - herself included - for how horribly they reacted.  Jack and his little brother rudely describe Auggie's face and Jack agrees to help him only because he feels guilty.

And we hear from Miranda, Via's former best friend, who has the lead in the high school play, but fakes sick when she realizes Auggie's in the audience, so that Via can have the lead.  She has known Auggie since he was little, and even gave him an astronaut helmet which he wore every time he went out in public for two years.  But Miranda sacrificing her part for Via (when they are not even friends anymore) just felt pitying to me.

AUGGIE AGAIN:

Auggie gets hearing aids and is self conscious about wearing them.  (I did like this aspect!)  But his sister thinks that with a face like his, hearing aids should be the least of his problems... :(

Eventually, Jack punches a kid for calling Auggie a freak, and Jack and Auggie are somehow friends again???  (Even though if a friend said they'd rather die than be like me, that'd pretty much be the end of the friendship, even if we  were only ten.)

Punched Kid's mom makes a big stink.  She emails the principal and tells him that she thinks the "pressure" and the "burden" of being friends with the "special needs boy" is too much  and the "regular kids" should not have to deal with it.  She also demands to know how Auggie even got into "their school" since it is not "inclusive."

The principal writes back, but so misses the point of everything when he insists to Punched Kid's mom that "Auggie does not have special needs.  He is not handicapped or disabled in any way."  (Except that if you're born with a condition that means you were trached and have had multiple surgeries, that affects your hearing and your ability to eat?  That counts as a disability and the principal is not helping by erasing Auggie's.  He does very little to address Punched Kid's mom's ableism.  (Even the kids at school know that she photo shopped Auggie out of he class picture for herself and some of the other moms...)

Meanwhile, things haven't changed a whole lot on the school front for Auggie.  He is still pretty isolated and kids put mean notes in his locker calling him an orc.

AUGGIE IS ATTACKED :(

Then it's time for the class trip to the nature reserve.  Auggie has a lot of fun for the first two days.  On the third night, Jack has to go pee, and there is somehow a line (in the boys' bathroom???) so Jack and Auggie go to the woods (off limits) to pee.

Some 7th graders from another school find them and start being horrible to Auggie about his face.  They won't let Jack or Auggie leave.  Shove him down where he gets hurt and starts bleeding.  His sweatshirt is nearly torn in half.  Some other 5th graders (former bullies) hear the commotion and somehow decide to step in and protect Auggie and Jack.  They all manage to get away.  They are hiding out in a cornfield when Auggie realizes he doesn't have his hearing aids.

The kids try to search in the dark but it is no use.  Auggie starts crying (sobbing) he is so hurt, so scared.  And because of his mom's warning that he shouldn't swim with his hearing aids on because they cost a lot of money.  He is sure he will be in trouble.

They never find his hearing aids.

Not until days later when they are discovered.  One of the 7th graders from another school that beat up Auggie broke his hearing aids and kept them in his locker.)  The principal asks if Auggie wants to press charges.  Auggie says no, because the bully "will never learn," and he is "getting new hearing aids anyway."  The principal urges him to talk to his parents, but this is never followed up on.

All the kids in school have heard the rumor of the big 5th graders coming to Auggie's aid. Suddenly, Auggie is like the 5th grade mascot. The child everybody says hi to now that he has been so hurt, and is so vulnerable without hearing aids when they previously made it their mission to avoid touching him for fear of catching The Plague.  When they called him a freak and ignored him.  It makes little if any sense to me why elementary aged kids - and former bullies at that - would step to fight even bigger kids when a kid they didn't care about was in danger.

Honestly, this aspect was the most upsetting: how brutally Auggie was assaulted and how that somehow made him desirable to other kids.  

And it felt like a huge miss (and likely an oversight due to being a nondisabled author) that this issue Auggie's adaptive equipment being stolen and broken was never properly addressed.  It's alluded to that Auggie feels out of sorts without his hearing aids, but he is mostly okay because he is "getting new ones."  

But getting new adaptive equipment is not as easy as going to the store and getting a thing you need.  The process takes months, likely especially for Auggie, because his hearing aids needed to be custom-fitted for his ears.  There is no mention of any actual punishment for the kid who did this to Auggie.  So he walks around for the last few days of 5th grade hearing the ocean in his ears.

THE ASTRONAUT HELMET:

On his way to 5th grade graduation, Auggie's dad casually tells him that he threw Auggie's astronaut helmet out.  Auggie is stunned and angry.  He wore this out in public for two years straight.  It made him feel safe.  Protected from people's stares.

His dad is clearly not expecting Auggie to be so upset and reasons that "I just missed seeing your face."

Again, it's obvious Dad was not trying to be malicious here, but this is where a conversation, or a series of conversations would have been appropriate.  

Think about it.  If somebody took something that you used every day, that you loved and relied on to keep you safe in the world?  And they threw it away?  That would be a huge violation.  Auggie gets over this pretty quickly, though,  (More quickly than I know I would) and simply asks his dad to "please not throw anything else of mine away without asking me first."

But Dad already has done that.

So who's to say he'll do anything differently in the future?

Again, this feels like a miss due to the author being nondisabled.  Because a parent doing something like this did not strike me as "no big deal."  It struck me as a pretty big one.  Not something that a kid would just get over in a minute.

THE AWARD:

Once at graduation, there is an award ceremony.  And while some kids earn gold, silver and bronze medals for academics or sports, Auggie inexplicably earns the last award of the day.

What's it for?

Well, no one really knows.

It might be for "being courageous".  It might be for "being a good friend."  It might be for "being of good character."  But it was clear (to Auggie and to me) that this was one of those awards that's given out to the poor, tragic disabled kid, who must have a really hard life.

I hated these types of awards.  Most disabled kids and adults I know hate them, too.  But Auggie says, "If they want to give me an award for being me, that's fine!"  And, "It's like the people you see sometimes and you can't imagine what it's like to be them.  Whether it's somebody in a wheelchair or somebody who can't talk.  Only I know I'm that person to other people.  Maybe to every single person in this whole auditorium."

It's clear that Auggie's perspective is being written by someone who is not like him.  Because he is being framed as the "other" here.  The "outsider".  And very rarely if ever do children readily accept getting overt attention for something like a disability.  Because the attention they're used to getting for it?  Is not positive.  Plus, being disabled is not an achievement.  

Auggie did not work toward a goal over time and he did not see his hard work pay off in any way that would have merited this particular award.  (I could see him earning an academic award, but instead the author made the choice that he earn the Inspirational Award.)

To finish?  The boy who has always been uncomfortable in crowds and having his picture taken, goes up proudly and smiles, taking the award he knows he did nothing to earn.  He poses for tons of pictures for his new "friends" who love him as a mascot.  As someone to pity.  But don't really know him at all.

CHOOSE KINDNESS:

The moral of the story is simple: When you can choose to be anything, choose to be kind.

There is nothing inherently wrong with kindness.  Except that when you have a disability, the line between kindness and pity blurs severely.  People see someone with a craniofacial condition, or another visible disability and their inclination is that we need them to be overly nice to us because our life is just so hard.

So, instead I challenge you:  Choose dignity.  Choose respect.  Choose to get to know the person in front of you before making a snap judgment about how much they suffer.

Because uninformed disability attitudes harm us more than our disabilities ever will.