Monday, September 18, 2017

Parenting Kids with Disability: Autonomy and Consent

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 / Identity / Inclusion vs. Accommodation / Community / Advocacy 

Dear Parents,

It's hard to believe the final post of the parenting series is here already (aside from the conclusion post next week.)  If there's an area I am passionate about (and that I don't see covered often enough) it's consent and autonomy.

MEDICAL INTERVENTION WITHOUT CONSENT NEGATES AUTONOMY:

I found a letter recently, from an eye doctor in my hometown, who examined me when I was two years old.  It was a few pages long, and detailed symptoms I had, and tests the doctor wanted to try.  The letter ended by stating that the doctor did the best he could to give me these tests "given Tonia's lack of cooperation."

For context?

I lived  nearly the first full year of my life in the hospital out of medical necessity.  I needed heart surgery and  throat surgery.  I had to be trached and needed a feeding tube.  I was surrounded by medical professionals, and while the nurses loved me and took care of me, until family could come on weekends to visit - while those nurses did their best to rotate on a predictable schedule and stick with me whenever possible so I would not have trouble bonding, I learned early to fear doctors.  (When I mentioned this note from the eye doctor to my Grandma, she was quick to defend little toddler me:  "Well, of course you didn't cooperate!  You didn't like doctors!")

ABUSERS TAKE ADVANTAGE OF LIMITATIONS CAUSED BY DISABILITY:

Throughout childhood, I experienced more surgeries.  Physical and occupational therapy.  Countless people putting their hands on my body.  I was taught about strangers, and about being able to say no if people tried to touch certain places on my body, but I found myself unprepared when a child from school came to play and crossed boundaries in every way with my sister and me.

I said I was going to go tell our parents, but the other child blocked the door.  They took advantage of the fact that I could not move fast and made a point to keep us there.  Tara also tried to leave, but the child dragged her further into our room, leaving Tara's back scraped and rug-burned.

When Mom came to check on us, the child from school acted like nothing was wrong at all.  The moment Mom went back upstairs, the torment started again.

We were seven.

[Tara and me on our 7th birthday.  We're pointing to our teeth because Tara had lost one and had a permanent tooth grow in, while I was still waiting to lose any of my baby teeth.]

I could only (finally) tell our parents the next day, after the other child had gone home.

Over the last few years, I have seen more articles about parents teaching their kids about consent and respecting their autonomy, regardless of age.  But I often wonder, where are the kids with disabilities in these discussions?

If they, like us, have experienced the distinct lack of autonomy that comes with needing medical intervention starting at birth, we don't have autonomy.  We are often not asked if we consent to someone else putting their hands on us.

WHAT CAN YOU DO?

This probably sounds beyond scary.  How are you supposed to protect your child when they might need painful medical procedures to stay alive?  When you cannot be there watching every minute of every day?

First, know that autonomy and consent have been woven into every single parenting post thus far.  If you want, go back and read the tips in past posts.  If you don't have time for that, let me give you the bullet points:

1) Don't Assume Your Child with a Disability is Too Young or Cannot Understand:

Start young and teach your child to respect physical boundaries.  Teach your child names for body parts and that their body belongs to them.  Respect your child's boundaries whenever possible.  Talk about it together.  ("I saw you shake your head no, so I'm going to stop tickling you, because I respect you.")

2)  Laughter and / or Hesitation Does Not Negate NO:

Model and teach that even if they laugh or smile while saying / indicating no, even if they hesitate and then shake their heads, that is them putting up a boundary and it should be respected.

3) Teach the Power of YES:

Maybe you've heard "only yes means yes" lately.  As an alternative to "no means no" (which seems to have lost its meaning.)  Teach your child that saying YES means "This is okay."

4) Arm Your Child With a Way to Alert You or Others If They Need Help:

This might be a whistle they can blow, or a safe word they can say that you know means they are in a dangerous situation and need to leave.  Make it clear you will always believe them if they come to you about a boundary that has been crossed.

5)  Take the Time to Talk About Scary Medical Things:

Talk before and after.  Before, be sure to give your child a heads up (age appropriately) about what is going to happen.  After, be ready to listen.  Your child doesn't need to hear that they needed X procedure for X reason (although this might help some kids) they need to figure out what they're feeling.  They need to know their bodies still belong to them, even though something painful or scary happened.

Please don't leave your child with a disability out of discussions about autonomy and consent.

* If you are reading this and have a disability, please know that any harm you have experienced due to a lack of autonomy is not your fault.

Monday, September 11, 2017

Parenting Kids with Disabilities: Advocacy

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 / Identity / Inclusion vs. Accommodation / Community

Dear Parents,

I would hazard to guess that advocating for your kids with disabilities is a huge part of what you do as parents.  First of all, thank you.  Your voices are so powerful and will sooner be listened to and respected than the voices of your disabled kiddos, unfortunately.  Fighting for your kid's rights, for the services they need, for the ones they don't need?  All of these things are so important.

I have two distinct memories related to advocacy from my childhood.  They both happened the same year.

[Image is: Me in a pink sweatshirt with iron on kittens on the front.  My walker is barely visible and I am just starting 4th grade at a brand new school.]
A LESSON IN SELF-ADVOCACY:

The first came when I told my mom that since it was my turn for show and tell again "Maybe [my teacher] will give me another ride up to the front of the classroom!"  Understandably confused, Mom asked what I meant.  So I happily told her how my teacher had moved my entire desk (with me in it) to the front of the classroom for show and tell, so I didn't have to move at all.  She said: "You can just have a little ride!"  I laughed and thought it was fun.  Definitely better than some of the other things she said about me.

Instead of laughing, though, Mom was upset.  "She doesn't need to do that.  You can walk up to the front of the room with your walker."

"I know," I said.  (Seriously, couldn't my mom take a joke?)

"Tomorrow, when you go to school and before show and tell, I want you to ask for your walker and tell your teacher, I can do it myself."

Whoa.  This just got terrifying.  Talk back to a teacher?

"Okay," I said, crabby now that Mom decided I couldn't have my awful teacher do one fun thing that made the kids laugh.

"No, I want you to say it.  Say, I can do it myself."

(Nooooo....)

"I can do it myself..." I mumbled, looking down at my blue sweatshirt.

"You have to say it louder than that so they know you mean it.  You can do things yourself and you need to tell your teacher that.  She doesn't need to be giving you rides to the front of the classroom."

"I can do it myself," I repeated, feeling like every time my teacher called me princess, called me different, and every time she let the other kids boss me around was my fault.

"Say it again.  You need to be able to tell her this.  She can't keep treating you like a baby."

"I can do it myself."  My voice was getting thick.

"I can do it myself," Mom prompted.

"I can do it myself," I repeated, and my voice broke.

I ended up in floods of tears.  Devastated.  Feeling to blame for the most awful of awful school years.  And for the first time in my memory, Mom picked me up and held me in the rocking chair.  She asked me what was wrong.  But I couldn't tell her.  I remember she held me for a long time.  And even afterward, I felt really vulnerable.

I don't remember a thing about that second show and tell.

Today, I can look back at that interaction and I can see what my mom saw.  I can see that my teacher was likely trying to save time by not having to wait for me to walk up to the front of the room, or figure out how to hold something up when I had my walker.  I'm sure my mom saw that my teacher pitied me.

Today, I see more - and I remember more.  I remember how my teacher didn't give me a choice that first time she gave me a "ride."  I remember how she just grabbed my desk and pushed it up to the front of the room.  I remember that she turned it so fast that I was dizzy, and vaguely afraid that the combination of fast movement, my CP balance and the slippery chair would cause me to fall.

Mom was right to teach me.  I think of her lesson often - every time someone offers me help - and I turn it down with a polite, "I got it."

ADVOCATING FOR ME:

There were also times when I could not advocate for myself.  It so happened that my fourth grade year not only gave me one of the most ableist classroom teachers ever, I also got an ableist adaptive gym teacher to go along with her.

My gym teacher was the lesser of the two evils until one day in spring.  Class was almost over, and we had been practicing some of the events for Track and Field Day to see that the adaptations would be suitable for me.

Just before it was time to go, she said: "You know you won't be able to get a red, white or blue ribbon like the other kids."

She said this like, "You know you won't be able to go to the moon like Neil Armstrong."  Like it was just a fact.

Her words stopped me in my tracks.  My spasticity kicked in at the unfairness of it all.  I was used to just taking an adult's word for things.  Not talking back.  Not questioning.  But this was just too bizarre.  I had to know more.  So I worked up my bravery and asked:

"Why?"

"Because there's going to be modifications on some of the events....but you can still get a red, yellow or blue sticker!"

Well, that just made me feel worse.  She said it like I could not possibly know the difference between a ribbon that signifies achievement and a sticker that might placate a toddler.

I went home that afternoon depressed and quiet.  Tara noticed right away and asked what was wrong.  I told her "nothing."  But we  never could keep secrets from each other, and soon, the whole thing came spilling out of me, after I made her promise not to tell Mom and Dad.

My sister has always been smart and even at nine, knew when adults had to know things.  The first thing she did was tell our parents.

Mom and Dad came to our room to talk to me.  Asked the teacher's name.  They said they were going to go into school for a meeting with her the very next morning.  I remember angrily, tearfully telling them not to, because "She's the teacher and she already made up her mind!  She makes the rules!"

My parents had that meeting and the next time I was in gym class my teacher told me I was allowed to earn ribbons after all.  Even on Track and Field Day, I couldn't forget that the ribbons were not legitimate.  My teacher already said.  The events had to be modified for me.  I shouldn't have been allowed to get ribbons but the meeting with my parents had forced the teacher into giving them to me.  It didn't even feel like I had earned them at all.

Even though it was a difficult experience, I think back on this a lot.  I know my parents advocated for me time and time again behind the scenes, at IEP meetings and in countless other ways.  For some reason, though, it's this instance that stands out to me.

My mom and dad took my word (and my upset) seriously and they did something about it.  They followed through.  They didn't just take my teacher's word for it.  And even though my ribbons felt fake, they felt a heck of a lot better to have than a page full of stickers.

WHAT YOU CAN DO:

1) Teach Your Child To Advocate For Themselves In Whatever Way They Can:

Pick a low stress time (or as low stress as possible) and talk to your kids about speaking up for themselves.  Role playing with toys really helps for these conversations.  Have your kid be the other character first, and you be your child.  Give their character some words to say to refute unwanted help, for example.  Then switch roles, so your kid can practice saying the words themselves.  My mom giving me a "script" to say did help me in later years.

For nonverbal kids, at the very least, teach them to say or indicate "no."  Practice at home.  When they say or indicate "no" make a point that you are paying attention.  You heard / saw that they said / indicated "no" so you are stopping whatever you are doing that they are not comfortable with.

2) Believe Them and Back Them Up:

If you find out something has happened after the fact and your kid is not being respected, first of all, believe them.  Your child's words have weight.  What they say, sign or spell matters.  If you find out something is not right make sure they know you take them seriously and then follow through and back them up.  (This is beautifully illustrated in a blog post by Ellen at EllenStumbo.com.)

3) Do Your Best to Make Sure Your Advocacy for Your Child is Centered on What Makes Them Feel Respected:

Keep communication open between you and your kids with disabilities.  Talk to them about school and what's happening.  What's going well and what they wish could be different and why.  Try to make this a natural part of your day.  Checking in with them because you care.

With school in session again, it's more important than ever that advocacy is discussed and implemented, so kids with disabilities can know they are valued.

Friday, September 8, 2017

Review: The Fosters 5x09 Prom

It’s the last twin recap of The Fosters 5A.  Honestly, this could not have come fast enough, and neither could the news that “ There’s been some response from people in the disabled community about how we have talked about Jesus and that has really informed how we’re talking about him in the next season, how we have structured his story in the next season,” according to Peter Paige.  

Tara and I are both cautiously optimistic that the change we have seen in the last 24-48 hours with regard to how the writers are discussing Jesus in interviews will translate to the writer’s room, and indicate a more respectful portrayal is on the horizon for 5B…



I NEED TO TAKE THE JOB IN TAHOE, AND YOU NEED TO GO BACK TO SCHOOL.  WHEN YOU’RE A SENIOR, MAYBE WE CAN FINISH THE TREEHOUSE BUT FOR NOW IT’S BEST FOR BOTH OF US TO GET BACK ON OUR FEET.  I’LL BE IN TOUCH.  GABE
Tonia: Well, this is just devastating.  I hate it because it just reeks of manipulation to me.  Whether he intended it to come off that way, I don’t know.  But for Gabe to disappear and tell Jesus he needs to go back to school and that “maybe when he’s a senior” they can finish the treehouse?  When nobody even talked to Jesus about any of it?  It’s yet another adult attempting to coercively control Jesus and get him to do what they want.  (Gabe and Moms.)
Tara: The letter, while not overtly negative, does nothing to fill the empty space left by Gabe.  Tonia speaks a lot about abandonment being Jesus’s worst fear, and now Moms are actively engineering it to happen?  
This feels like punishment for “Post-TBI Behavior” because it is (from Moms).  But Jesus will not experience it this way.  He will experience it as his bio father leaving because Jesus as he is now failed to live up to Gabe’s expectations.  
Holding that treehouse as a bargaining chip is just plain manipulative.  
I do not approve.
JESUS, MARIANA AND JUDE - JESUS AND JUDE’S ROOM:
Mariana: He’s a man of few words.  
Jesus: [defeated] Yeah, he couldn’t even say it to my face.
Tara: Jesus’s face looks so sad :(
Mariana: Look, I’ve learned to not expect much from Gabe and Ana.  They’re not our parents.  
[Lena and Stef walk in]
Lena: Okay, you guys, I’m gonna ask one more time.
Jesus: I didn’t break the model.
Mariana: We had nothing to do with it.
Jude: Nothing.
Stef: Okay.  We believe you.
Tara:  You cannot tell me that Moms don’t know at this point that Gabe left - if for no other reason than they apparently asked him to leave.  They walk into the room, see the twins’ faces, and then proceed to ask about the model?  You made this bed, Moms.  The very least you can do is follow up with the fallout.
Tonia:  I noticed, too, first, that Jesus and Mariana don’t hesitate to talk about Gabe and Ana and their upset in front of Jude.  Because as a fellow adoptee, they know that Jude gets this.  Whereas of course they would not feel comfortable discussing this in front of Moms (or Brandon, I would hazard to guess.)  And, to be clear, it is on Moms, as the parents, to at least check in with Jesus and Mariana about this, if not have a more in depth conversation.
A second thing I noticed was Moms’ quickness to believe the kids here.  I wonder if the scene would have played out the same if it was only Jesus and Moms.  Would they have taken just Jesus’s word for it? Because I can’t help but think that without Mariana and Jude there backing him up, Moms would not be so quick to believe him.
Lena:  It’s not going to be as easy to convince Drew…There is something you’re not gonna like: Drew is cancelling prom.
Mariana: What?
Lena: He thinks that if someone is upset enough to deface school property, that things could get out of hand at a party where some kids might be drinking.
Mariana: That’s bullshit!
Stef: Mariana…
Mariana: Okay well what if we throw our own prom?  Raise the money ourselves?  How can he stop us?
Stef [to Jesus]  Hello, handsome!
Lena: You look like you’re going to a firing squad, not a prom.
Stef [to Lena] Hey!
Tonia:  A tiny moment, but this made me cheer a little bit inside.
Jesus: Yeah, well, I don’t have a date, I can’t dance, and I’m probably gonna see Emma, so I wish I WAS going to a firing squad…
Stef: Funny!
Tonia:  I find it interesting that last episode nobody even answered Jesus about whether he could go to prom, and here, the expectation is very clear that he go, even though he doesn’t want to.  
Also, Stef?  He’s not trying to be funny.  
Tara: At what point will this arbitrary dancing ban be lifted from Jesus?  As a brain injury survivor who was never steered away from activity during recovery, I’m asking.
Also Moms?  Please take Jesus seriously when he references wishing to die.  :(
Lena: Let’s take pictures!  Okay everybody!  Say cheese!
[All except Jesus]: Cheese!
Stef: [scolding] Jesus, you didn’t say cheese!
Jesus: [defeated and still trying to smile] Cheese.
Stef: [chastising] Jesus!
Tonia:  Nothing in Jesus’s storyline this episode got to me quite as much as this sad, quiet, matter-of-fact “cheese” Jesus says.  It actually makes me scared for him.  That he is clearly depressed and no one around him seems to notice.
Tara: Perhaps instead of insisting that Jesus hide his unhappiness for your sake, you talk to him about how he’s doing?
He has had to adjust to a life-changing injury.  He broke his engagement with his girlfriend (his only visitor) after learning that she accepted his proposal just to urge him back to school.  His biological father left unceremoniously, and the treehouse which was his only hobby is now on hold indefinitely.  
This is too much for any 16-year-old to take on without the support of parents or concerned adults.  But Moms have wanted a lot of this to take place, while actively avoiding having conversations with Jesus for fear of his “outbursts.”
The way this storyline is progressing, it is far too easy to see why disabled people are 2 to 10 times more likely to experience depression than the nondisabled population.  
One fan’s idea that Jesus not saying “cheese” might be aphasia-related is also worth noting.
JESUS AT REBEL PROM:
[Seated in a chair, he scans the warehouse for Emma]
Tonia:  Jesus’s POV here is literally mine at most social gatherings.  I find a chair and I sit.  And I people-watch.  It’s isolating, but it is also my choice.  The difference is, Jesus is being forced to sit out, when we know he and Poppy had a good time together last party.
Tara: Jesus was literally me at every social function post-brain injury.  On the outside looking in.  Feeling separate.  Having no energy for interacting.  Being deeply and quietly depressed.
I think the combination of having a seizure after the last warehouse party, Lena’s warnings about inpatient institutionalization, Stef chaperoning the event and his overall depression has lead to Jesus sitting on the sidelines almost the whole night.  (Note that while Stef is there, she never checks in with him as he is Being Good - never mind that he is miserable.)
Poppy:  Do you want to take a picture with me?
Jesus: Uh…yeah.  Sure.  
Tonia:  I like that Poppy seeks Jesus out here.  How it’s clear she’s attracted to him.  I actually like all of Poppy’s interactions with Jesus.  Because she knows a little about his injury, but mostly she knows him, and treats him as she would anybody else.  Not with kid gloves.
Tara: It says something, though, that Jesus - who previously got along and had a good time with Poppy - will now only grudgingly interact with her.  :(
Photographer: [to unsmiling Jesus]  Smile!  You’ve got a beautiful girl on your arm!
Jesus: [looks at Poppy and both smile at each other]
Photographer: That’s it!  [Snaps pictures]
[Emma looks on as Jesus and Poppy now pose back to back.  Emma is not happy.]
Tonia:  I know this is not necessarily what this scene was going for, but the photographer telling Jesus to smile really reminds me of The Face that many disabled people must wear in public.  The photographer doesn’t know Jesus from anyone.  Jesus’s disability is invisible.  But it doesn’t change the fact that he does have one.  
Existing in public is a tricky thing when disabled.  Either people find you “so inspiring” for showing your face in stores or at social gatherings or they assume your life must be “so tragic.”  Either way, the inclination is there to always smile.  As a disabled person you are vulnerable and your smile can be your only weapon to diffuse a situation.  To soften words that nondisabled people may need to hear but will not like.
Smiling is protective, and the fact that Jesus can’t smile genuinely right now just speaks to his level of sadness, and vulnerability here.  Existing in public while disabled, we very much exist for the Nondisabled Gaze. Because whether seeing us “inspires” a nondisabled person or whether they feel awful for our “tragic” life, the end result is the same:  The nondisabled person comes away feeling better about themselves. 
That is spoken to here in an indirect way, because just like earlier, when Jesus was asked to smile a certain way to put Moms at ease?  Here, he’s asked again to smile, to put the photographer at ease, as well as Poppy.
Jesus’s depressed demeanor is uncomfortable, so he must smile.  Fake it.  To make those around him comfortable.  
Because as is often the case: a nondisabled person’s comfort - their feelings - are placed at a higher level of importance than a disabled person’s safety.
And if he can’t express his unhappiness even through a reluctance to smile, where do all those negative feelings go?   
In my experience?  It just makes you hate yourself more.  Because you’re trying to live up to this expectation that is impossible.  And you know that if people around you know you’re disabled?  They will assume that is the single reason you are depressed. When in reality?  In addition to adjusting to his new disability, Jesus has broken up with his girlfriend, Gabe has left, and Moms are controlling everything he does, even down to how he smiles.
It’s more than just disability, which can take time to adjust to.  It’s the way you’re treated by people who don’t even know you, and by your friends and by your family.  Sometimes, it can feel like there is no escape from it.
That’s why I’m so worried about Jesus.
Tara: Repression of negative feelings leads to either breakdown or outburst.  Sadness or anger.  Sometimes both at the same time.
After I went back to school post-injury, I became a subject of interest to an adult studying brain injuries.  She met with me on a few occasions.  Asked where I struggled academically. About my physical limitations.  But when she asked about how I was impacted socially, I broke down sobbing.
This was significant because, post-injury, I felt an intense disconnect with my emotions.  Everything felt distant and deadened.  As if my entire being was trapped in cotton batting.
Did that mean that I never had an “inappropriate outburst?” No.  I had a few.
You might say that breaking down in front of a relative stranger in an academic setting is inappropriate in and of itself.
The fact remains that the social impact of a brain injury cannot be understated.  This is also why Moms meddling unnecessarily with Gabe and the treehouse is so harmful.
JESUS, STANDING WITH OLIVIA - LOGAN’S DATE - WATCHING MARIANA TALK TO MAT:
Olivia: Is THAT Mariana’s date?
Jesus: No. That’s–that’s her ex.
Olivia: They’re back together.
Jesus: They are?
Poppy: Oh!  Yeah!  They’re TOTALLY back!  That’s her prom date.
Jesus: Wait. Really?  She’s back with Mat?
Poppy: [to Jesus]  That’s not Wyatt?
Jesus: No.
Tonia:  I liked this conversation, because, for once it wasn’t people actively lying to Jesus.  Poppy doesn’t know all the details of Mariana’s past relationships and Olivia knows even less.  So any faulty information Jesus gets here is purely accidental.
MARIANA AND POPPY - REBEL PROM:
Mariana:  What is so important?
Poppy: Jesus told Olivia that Mat’s your ex, so she think’s HE’S your prom date!
Mariana: Well, maybe he WILL be…
Poppy: Well, he’s hot!
Tonia:  And again here.  It’s clear that Poppy’s not reporting back to Mariana that Jesus’s brain injury made him irrational and so he told Olivia Mat’s her ex.  It’s just stated as fact.  
Likewise, Mariana’s reaction isn’t to blame Jesus’s TBI either.  She says maybe Mat will be her prom date!  (This suggests, that at least in this moment to Mariana, Jesus’s words have weight.)
JESUS AND POPPY - SITTING AT A TABLE AT PROM:
Jesus: [Watches Mariana and Emma dance with each other.]
Poppy: Is that the girl you just broke up with?
Jesus: How do you know I just broke up with someone?
Poppy: Because you’re SO miserable, and I’m SO hot, and you haven’t even noticed!  
Jesus: I–uh…  I’m sorry.  You look nice.
Poppy: Gee.  Thanks.
Jesus: [Still watching Mariana dance with Emma]  I didn’t even know they were FRIENDS again…
[Later, Jesus is still watching.  Poppy is still sitting with him.]
Jesus: Why are they slow dancing?
Poppy: Because it’s a slow song.
Tonia: What strikes me here is that Poppy has sat with Jesus at this table all night.  But it isn’t because she pities him.  It’s because she’s hoping he’ll ask her to dance.  She finds him attractive.  She likes his personality (what she saw of it at the last party, for sure.)
I also love that she just talks to Jesus like he’s any guy.  She answers his questions, but she’s still a little annoyed that he won’t ask her to dance.  (I want him to dance, too, Poppy!  He should get to have fun!)
Tara: Most proms last a good 6 hours.  And Jesus is sidelined for 99% of it.  And no one is concerned.
JESUS WAITING FOR EMMA OUTSIDE THE BATHROOM, EMMA’S REALLY DRUNK:
Jesus: Hey, Emma.  So…are you and Mariana friends again?
Emma: We’re lovers.
Jesus: [squints]  
Emma: Just PRETEND lovers so that your neighbor’s girlfriend doesn’t think that she’s after him?  Whatever.  I have to get back to my girlfriend.
Jesus: Hold on.  Emma, hold on.  Look, I–I love you.  Okay?  I love you and I am an idiot.  I don’t care if–if you don’t…want me forever.  All I care about is right now.  And, I– I know that I haven’t…been…myself…lately but I WANT to be me again.  For me.  And also…for you!  I–I wanna be the man that you deserve.  Would you please just give me another chance?
Tonia:  This part really bothered me.  Mostly because Jesus had finally gotten to speak up for himself.  Have his own thoughts and feelings that were not dictated by those around him.  And here he is like days later, taking it all back. 
I can justify it, given his character, to a point.  Does it make sense that he would want to get back with Emma, especially after Gabe left, so that way at least he’ll have someone?  Yes.
But all I can hear in his plea to Emma is the writers, okaying one more instance of Jesus being degraded because of his injury.  The fact that nearly an entire episode passed with no one calling him “stupid” and then he calls himself an idiot?  Proving Mariana’s words about him were right all along? 
Tara: But if enough people call you stupid, or an idiot, or the R-word - or do not refute the notion - you will eventually begin to see yourself that way.  And in Jesus’s case, he already felt that he was not smart.  
Tonia: And for Jesus to be so hung up on “wanting to be the man Emma deserves” with the strong implication that Jesus must change himself in order to be loved or lovable?  It’s just difficult, in these moments, to ignore that nondisabled writers are at the helm here, and that - at this point at least - it feels like their own ableism informed most of this speech by Jesus. 
This is the last thing the audience hears from Jesus.  The message they will carry about him for months until 5B airs.  That not only do people around Jesus think he’s irrational, aggressive, ridiculous and stupid - Jesus actually feels this way about himself.  
In an episode that was mostly free of ableism (in his storyline at least).  This was the parting message and Jesus is saying it out loud, just drives home what everyone else has already said:
“I’m an idiot and I need to be nondisabled - to ‘get better’ - in order to have a prayer of being loved.”
Maybe it’s because it’s the last episode, which means it’s the ninth week in a row we have had to hear these types of sentiments, but this one was just one too many for me :(
Tara: I want to focus on this part of Jesus’s speech:  I know that I haven’t…been…myself…lately but I WANT to be me again.  For me.  And also…for you!  I–I wanna be the man that you deserve.
To me, this feels as if the writers have attempted to envision what Jesus is going through and how he would feel - perhaps by likening it to a person dealing with substance abuse.  Because with substance abuse, there can be a stopping.  
There is no stopping when you’re living with a brain injury.  
Do I understand Jesus’s sentiment about wanting to be himself again?  Absolutely.  I grieved my former self for years.  However, this speech implies more than wanting.  It implies choosing.  It implies, once again, that if Jesus only puts in the hard work, he can fully heal his brain.  And this is not the case.  
I have thought many times, “I wish the injury hadn’t happened.”  “I wish I was the person I was before, because who I am now feels strange and new and different.”  But saying it out loud would have felt futile.  Because no amount of work was going to change the way my brain thought, the way I experienced things, the way I felt my emotions.  My brain injury changed me on a fundamental level.  
And wanting to be the man Emma deserves?  This implies that Jesus is not enough or whole as he is.  And if he continues striving toward impossibility - becoming nondisabled again - instead of taking small steps toward self-acceptance, he will only persist in hating himself.
MARIANA, LOGAN AND OLIVIA:
Olivia: [To Mariana] Where’s your girlfriend?
Mariana: She’s in the bathroom.
Logan: Isn’t that your girlfriend kissing your brother?
[camera pans to show that Jesus and Emma are kissing]
Mariana: [Smiles for a split second before feigning outrage] MY OWN DAMN BROTHER?!  This is the worst prom ever!
Tonia:  Mariana’s comic timing here was everything.
But there are so many loose ends.  So many things left unaddressed.
1) Jesus is still not back to school (this will be covered in 5B, according to interviews)
2) Moms are still planning to take Jesus to LA for shock treatment “in a couple weeks.”
3) Moms still operating very much out of treating Jesus like “symptoms” rather than their son.  I would love to see them having a conversation with him.  Listening to him.  Just generally, I’d love a decrease in the ableism by 100%.
4) Moms need to acknowledge their part in Gabe leaving.  Talk about it with Jesus and Mariana.
5) Jesus is depressed.  I’d like someone to notice.  Be there.
6) IMO, Lena’s threat to institutionalize Jesus has never been appropriately addressed.  As an adoptee, this would have struck lasting fear in Jesus (which Tara referenced earlier in this recap.) It’s not just going to vanish because they gave him a hug.  (I know, as adoptees ourselves, Tara and I are still holding our breath each week about the possibility of Jesus being sent away.)
WHAT ABOUT GRACE?
Tonia and Tara:  Also in this episode, we learned that Brandon’s girlfriend, Grace, has leukemia for the third time.  As seems to be the case whenever there is another story featuring a disabled/chronically ill character, whichever is less “tragic” at the moment seems to take a back seat. IMO a big reason we did not see many of the Unaddressed Things get addressed with Jesus was because Grace’s storyline took priority over Jesus’s.
(And quiet parts of us are adding that Disabled People Hurting never matter as much as How Disabled People Hurting Make Nondisabled People Feel.  That will always be the story.) 
Unlike with Grandpa Adams, we won’t be contrasting Grace with Jesus.  we’ll be comparing them:
In the episode, Brandon tries to figure out why Grace has to move.  When her mom is reluctant to break her daughter’s trust, Brandon says he will ask Grace himself.  Mom outs Grace’s medical information, telling him Grace has leukemia.
Compare:  Brandon once outed Jesus’s medical information to Grace.  Moms have outed Jesus’s medical information to Tess and Dean and the other kids, outside of Jesus’s presence.
Brandon is not honest with Grace about what he knows.
Compare:  Brandon’s not honest with Jesus about things that concern Jesus.  The family is not honest with Jesus.  This is framed as okay because Nondisabled People Know Better.  And we can just see Brandon’s respect for Grace as a whole person fading, as he is overwhelmed by her illness.
Grace is a plot device.  It’s not about her.  It’s about how losing her is making Brandon feel.
Compare: Thus far, Jesus’s TBI has also been little more than a plot device to talk about how hard it is to live with a disabled person.  It’s not about Jesus, but how Jesus is making his family feel.
Tonia:  Though not disability related, I have to say, before I go, that choosing to humanize DREAMers like Ximena, who received DACA as a child could not have come at a more (sadly) perfect time.  And seeing Ximena find sanctuary in the church, brought this clip from The Hunchback of Notre Dame instantly to mind (from around 2:00-2:30) but if you’re like us, you’ll want to listen to the whole song.
So powerful to see this.  I do hope Ximena is okay.
And I hope that my desire for a more respectful, less ableist 5B is not unfounded.
Tara: Thank you all for reading along.  This half-season has been a rough one, and it is so heartening to know that there are people out there who care.  Who want to learn.  
Please know that the comments section is always open for discussion or questions - we would love to hear from you!
PS From Tonia and Tara: After sharing this recap with the writers last night, we received the following response from Bradley Bredeweg (writer and executive producer on The Fosters), which reads:  
we appreciate all of your thoughts this season and we continue to discuss a new path forward for Jesus.  Consider us enlightened

Monday, September 4, 2017

Parenting Kids with Disabilities: Community

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 / Identity / Inclusion vs. Accommodation

Dear Parents,

“I know JUST how that lady talked to you because that has happened to me a lot in my life.”

“Mine is the same way.”

“It's so nice to know that you feel similarly, because I felt so conflicted about being frustrated by it.

There was a time when I never heard these words of solidarity, when I never felt the connection that comes with giving and receiving understanding in such a way that only happens when you speak to someone about an experience who has endured the same.  Community is powerful.

[Image is white text on a blue background that reads: I will always be there for you Tonia and Tara.  Underneath are three flowers.  Sweet, supportive words from someone in our community.]


Your child has community in school and they have family at home, and both are vital.  But there is also a need for kids to connect with other people with the same disabilities they have.

EARLY MEMORIES OF COMMUNITY:

Growing up, my connection to the disabled community was limited to the other disabled child in my preschool.  Or the classroom that was a catch-all for a child with any type of disability when I was seven and went to summer school.  I had so much internalized ableism then, that I used to come home and tell my sister how “cute” the older boy in the wheelchair was, not because I had a crush, but because he was more severely impacted by a disability and could not speak verbally.  It’s the same reason I wanted to always be around the Deaf boy, though we could not communicate.

In middle school, I was again grouped with the only other girl who was disabled in my grade.  We sort of became friends, based on proximity, but did not have much in common.  Once, she swore at me, and called me a vile name in art class and the teacher asked her if she was okay, ignoring me altogether.

Suffice it to say, growing up, forging a sense of community was difficult.  My disability was never framed as anything more than something I needed to improve upon.  Adults in my world concurrently treated children like me with too little understanding and too much pity.

If you want the unvarnished truth, I grew up thinking I was supposed to be nondisabled.  This is not to say that I was out of touch with my reality as a child with a disability.  That fact was never lost on me.  But I had a constant sense of, “I’m just like them, I just use a walker.”  “I’m just like them, I just use crutches.”

My goal was always to be “just like them.”  The problem came when I constantly realized that I would fall short.  That I would never be just like them.  That actually, no matter how hard I practiced, how much I stretched, how strong my legs became, I would never walk independently.

SUMMER CAMP:

It was in sixth grade when my mom raised a concern at my first middle school IEP meeting that I was not accepting my disability.  She was right.  I wasn’t.  And I’m glad she was paying attention.

The following summer was my first at Camp Courage.  I was thirteen, and it was the first time I’d ever been around so many other kids with disabilities.  For the first time, I didn’t feel like I stuck out.  I had a wheelchair, yes, but so did almost everyone else.  The nondisabled were happy to help.  I never felt like a burden or like I brought them sadness or pain because of what I could not do.  The name of the game was adapting.

So, we all got to do arts and crafts and make homemade pizza and eat dinner for breakfast, but we also all got to swim and horseback ride and try activities we didn’t get to do at home.  We got to have shaving cream fights and go to dances.

I made a best friend, and we came back to camp for two more summers.  My last summer there, there were four of us.  Four best friends, all happy to be there, loving the fact that for this one week every year, everybody was “the kid in the wheelchair,” so no one stuck out.

I had a long way to go.  I still looked upon my cabin-mates with pity, believing that I, (the least physically impacted by disability in our friend group) was “lucky” and would often respond when a friend needed a hand, because “I could do more than they could.”  I was exposed to many different types of disabilities and I learned not to stare at other kids who looked different.  I didn’t ask them about their disability because there, no one wanted to talk about that stuff, we all just wanted to have a good time.

It was the beginning, though, of self-acceptance for me.  It was extremely important that in those difficult teenage years I had a place where I could just be myself and I didn’t have to be the one disabled kid in the sea of nondisabled kids, constantly reminded of what I was missing.

I finally started to realize it was okay to be just who I was.

MENTORS:

After camp, throughout high school, college and even beyond that, I surrounded myself with nondisabled friends.  Even when I moved into accessible housing ten years ago, I didn’t forge friendships with many of the others who live here.  It was not an automatic community by any sense of the word.

Because of this, again, my eye was often drawn to all the ways I was unlike my peers.  They could be spontaneous.  They could go in the haunted house at the State Fair.  They could walk and run.

They just could, while I could not.

Over the past couple of years, though, since I started blogging, I have slowly started forming my own little community.  As of now I have four people I know I can reach out to anytime, about anything.  Three of them have CP, and the fourth uses a wheelchair full-time.

The thing is, all of these people are younger than me.  I have never had a mentor with my same disability.  Definitely not when I was a child, and not now.  However, I believe we create what we need in life, and over time I have been able to create community.  While I know not all of them look to me in the sense that I am a mentor (and that’s fine) I try to instill in the 20-somethings not to let the sense of community stop with them.  I encourage them to be there too, for younger kids with CP.  When they say, “I wish they had you to talk to like I do,” I say, “They don’t have me.  They have you.  They’re lucky to have you.”

Passing on this sense of belonging, of being a part of something will help the community and the bond among us grow even stronger.  For those with CP, I point out the physical characteristics that make us like each other, that mean we are a part of this very particular community, with specific facial features and movements and that it’s not a bad thing, because it means that we belong somewhere.

Perhaps, the most rewarding is being there for a child who also has CP.  She calls my sister and me her “role models” and wants to be like us when she grows up.  It’s flattering.  And it’s beyond amazing to see someone so much like me, growing up before my eyes.

To think that once upon a time, I thought that I was the only one.

Friday, September 1, 2017

Review: The Fosters 5x08 "Engaged"

[Image is: a picture of the word EVOLVE with synonyms for it within each letter]
FAMILY DINNER - KITCHEN:
Mariana: We moved prom up this year, so we don’t have to compete for venues, but now we’re way behind.  So I was hoping my lovely family could pitch in?
Jesus: Can I even GO to prom?
Callie: I’m probably not gonna go…  Aaron’s in college.  
Brandon:  Yeah. Same here.
Tonia:  So…is no one gonna answer Jesus’s question?
Tara: It is referenced later that Moms have been actively avoiding conversations that may lead to “outbursts.”  However, in doing so, Stef is literally pretending Jesus does not exist here.  Please don’t be like Stef.  All people appreciate being acknowledged and feeling heard - disabled people included.
Brandon:  I know this is kinda last minute but Dad and Ana’s engagement party has to be this weekend.
Jesus: Uh, can Emma come?  Come on, it’s been a week.  So I can see her, right?  
Tonia:  I was surprised to learn Lena specified a time limit on banning Jesus from seeing Emma.  It’s been a week since Jesus has been threatened with institutionalization.  A week since Lena started her scary-as-hell search for cures for him.  We know they’ve gone gluten free for him, controlling what he eats, already.  I guess I should be glad he’s eating spaghetti with the fam?
Tara: It has also been a week since the 3.5 - 7 hour proficiency test and less than a week since the neuropsychological assessment that took “all day.”  It is a fact that these tests took place within days of each other.  I am so horrified.
Lena: Honey, it’s a family party, so no girlfriends or boyfriends.
Tonia:  Since when don’t Moms allow SO’s at parties?  (Just since trying to control every move Jesus makes?  Yeah, I thought so…)
Jesus: [scoffs]  Uh… Emma’s not just my girlfriend…
Mariana: [teasing] Right.  She’s your FIANCEE.
Stef: Mariana…
Jesus: [puts his napkin down, gets up from the table]  I’m done.
Tonia:  This stuck out to me when we watched.  The re-emergence of “I’m done” which we heard Jesus say really early on in his recovery.  He’s clearly stressed.  And Mariana just gets a mild reprimand for totally mocking the legitimacy of Jesus’s engagement to Emma.  No wonder he’s done…
Tara:  Aphasia worsens with stress.  Aphasia worsens with stress.  Aphasia worsens with stress.
Moms and Mariana do not take his engagement seriously.  
Jesus is forced to revert to what he can say, which is “I’m done.”  It is important to note that this is not an issue of impoliteness. 
Also, remember that with aphasia, the phrase “I’m done” might communicate more than “I am finished with my dinner, and I would like to be excused.”
Other possible meanings include but are not limited to:
- “I’m frustrated, and I need a break.”
- “I’m overwhelmed, and I need a break.”
- “I’m upset about Mariana teasing me, and I need a break.”
- “I’m upset that Moms won’t allow me to see Emma even though I’m not grounded anymore, and I need a break.”
Lena:  Hey.  Could you please ask to be excused?
Jesus: Yeah.  Can I be excused?
[pause]
Lena: Yes, you may.
Jesus: Thanks.  [Jesus leaves the kitchen]
Tonia:  My favorite thing about this is the way Jesus asks to be excused, because as words on the page, his tone might read as Jesus “being good.”  Quiet.  Obedient.  But there’s an urgency here.  His tone of voice communicates so much more than his words.  He’s losing patience.  Can’t put up with being treated like this.  Nor should he have to.  
Tara: Lena does treat this as an issue of politeness.  She is policing Jesus’s speech and forcing him past his limits.
In this instance, Jesus has enough framework to be able to complete the required exchange, but the fact remains that Forcing “Acceptable” Speech When Confronted With Someone’s Limits Is Abusive.  
Consider what may have happened if Jesus had been unable to ask to be excused:
1) He may have been forced to sit with the family, while stressed and physically unable to take a break.
2) Jesus decides to leave the table without being excused, prompting Moms to reprimand him.
If either one had happened, Jesus would be receiving punishment for his communication disorder.  
As the scene played out, Jesus’s limits were not respected.  He was treated not with understanding, but as someone being willfully rude.
Tips: 
1) Accept the communication the person is able to give you.  (Remember that behavior is communication.)
It may not be pretty.  It may seem “rude.”  But give them the benefit of the doubt.  Chances are high that they are using the only words available to them at a given moment.
2) Ask clarifying questions that the person in question can say/indicate yes or no to if needed.
3) Set aside a time (ideal for the person with aphasia) to discuss how you can best support them communication-wise.  Realize that this will likely be an ongoing conversation.
4) Be patient.  Know that the person with aphasia is doing the best they can.  
Mariana: Is he ever gonna be normal again?
Tonia: Okay, Moms you seriously need to derail this ableism train.  I’m not kidding.  Jesus is normal.  It’s normal for someone to want to get away from being consistently dismissed, controlled and not taken seriously.  The fact that Stef and Lena are just letting comments like this slide and not taking anything Jesus says seriously is only hurting him more.
Tara: This notion hurts not only TBI survivors but disabled people in general.  Our brains and bodies will never conform to a nondisabled standard.  To ask us to “be normal” is asking us to hate ourselves.
JESUS AND GABE - GARAGE APARTMENT
Gabe: [eating a plate of spaghetti]  Mmm.  Thanks for the food.
Jesus: Yeah, it would’ve gone bad anyway.  So, we’re having a party on Saturday for Mike and Ana…
Gabe: I know.  Ana invited me.
Jesus: Yeah, well, you gonna go?
Gabe: I don’t think Mike would want me there.  I know her parents won’t.  
Jesus: But they wrote you the letter.  To get you off the sex offender list.
Gabe:  It’ll get awkward.  Trust me.
Jesus: Why?  ‘Cause you still love her?
Gabe: I never said that.
Jesus: Yeah, you did.  You said she’s the only woman that you’ve ever loved.
Tara: (What was that about Jesus having trouble with memory and recall?) ;)
Gabe: Okay.  But she’s marrying Mike, so–
Jesus: Because she doesn’t know how you feel about her!  Maybe.  I–
Gabe: Well, neither do I.  But I’m pretty sure it wouldn’t make a difference anyway.
Jesus: Okay.  Well, they’re getting married in a MONTH.  So just…if you figure it out?  Don’t wait until it’s too late.
Tonia:  So much about this exchange stands out to me.  First, I just breathe a giant sigh of relief that Jesus and Gabe are having a legit conversation where Jesus’s words have weight.  
But also?  Jesus only knows one way to relate to his bio parents (referenced in season 2) and that is to take care of them.  Here, he brings Gabe food.  This always feels especially poignant knowing how thoroughly the twins were neglected as babies and prior to foster care at age five.  He’s looking out for Gabe.  Taking care of Gabe.  Making sure he has enough to eat, and also trying to ensure that Gabe’s relationships are repaired and he has no regrets.  
Because if Gabe is happy, then he won’t leave, and Jesus won’t be abandoned again.
STEF AND LENA - THEIR ROOM, BEFORE BED:
Stef: How long are we gonna let Jesus think that he’s engaged?  I mean, I say we go in there right now and tell him that he’s not getting married.  He is going back to school or I WILL arrest him.
Tonia:  Oh that sounds like a perfect plan, Stef <— Sarcasm  Also, newsflash?  Emma accepted the ring! 
Tara: Jesus does not think he’s engaged. He is actually engaged.
Lena: That’s not gonna work.  Trust me.  I’ve seen it.  The more we demand, the more defiant he gets.  Besides, does it matter what the motivation is if it gets him back to school?  
Tonia:  OH MY GOSH MOTHERS.  
Maybe you could try this thing you seem to employ with all your other children?  And instead of assuming Jesus is automatically going to get defiant you sat down and talked with him.  
Since his brain injury, I have not seen one conversation that is just them checking in with their son because they genuinely want to know how he is feeling emotionally.  Even the conversation when Jesus found out about Emma’s abortion was brought about because he came to them, and they were checking in with him to cover the fact that they already knew about the abortion…
I wish they would just respect him enough to talk to him…
Tara: I don’t even know what to say.  Stef thinks the engagement is a figment of Jesus’s imagination. Lena doesn’t care that he (thinks he’s) engaged as long as it gets him back to school? 
Stef: What does Emma think about all this?
Lena: Well, you said yourself she’s got a good head on her shoulders.  And for all we know, with Jesus’s TBI?  This whole thing could be in his head.
Tara: Dismissal is ableism.  
Lena:  I seriously doubt she agreed to MARRY him.
TaraWow. And here we have the notion that Disabled People Are Unattractive And/Or Unworthy Of Being A Spouse.  By Jesus’s own mother. A kick to the chest would hurt less.
Stef: I think that we should find out.  
Tonia:  I can’t explain how painful it is to see, so consistently, how little faith Moms have in Jesus now.  Just how little they value him and respect him as a human being.  
This is a very real depiction of ableism that people with brain injuries can and do endure.  But it’s also shown that Moms are right in treating Jesus so terribly, because he has a brain injury.  And that is just plain dangerous.  No matter what disability someone has, always presume competence (assume they are capable of understanding you, of making decisions, etc.)  A brain injury is not a free pass to abuse someone.  Being family to someone with a brain injury is not a free pass to control and dismiss them.  To threaten them with institutionalization and look up torture methods to “cure” them.  That’s not love.  That’s not help.  That is ableism.  That is abuse.
I guarantee you, though, if the ableism around Jesus were not a thing (even just from his family) he’d feel that.  His stress level would go down, and then, maybe, he’d be able to open up to his family when he needed to talk, or needed advice or help with something.  Jesus would be able to start to come to terms with what’s happened to him.  And he’d be able to feel loved while he did it.
Tara: These types of comments chip away at the self-worth of the disabled community.  
LENA AND EMMA - LENA’S OFFICE AT SCHOOL, THE NEXT DAY:
Emma: You wanted to see me?
Lena: Oh, Emma.  Hi. [Lena walks over and takes Emma’s hands, looking to see if she is wearing Jesus’s ring.]  How are you?  [Emma isn’t wearing the ring.]
Emma: Is everything okay?
Lena: [Lets go of Emma’s hands.]  Yes.  Everything is fine.  We just wanted to let you know why you haven’t been allowed at the house.
Emma: [nervously] I get it.  I told him, he shouldn’t have gone to that party.
Lena: Well, we didn’t want you to think it had anything to do with YOU.  And we are so grateful for how supportive you’ve been of Jesus and his recovery.  Thank you for convincing him to come back to school.  Honestly, we don’t know what he’d do without you.
Emma: I–I’m happy to help.  Whatever it takes.
Lena: [nods and smiles.]
Tonia:  Of all the comments I have seen on this scene with Emma and Lena, none have addressed how truly gross this scene is.  
To call Emma down to your office just to tell her how awesome she is and how grateful you are for her to be there for Jesus.  Like, would they do that for any of their other kids’ SO’s?
Making a point to praise a nondisabled student for being a friend/SO to a disabled one (and your son at that) communicates that disabled people are hard to be around and hard to love.  That we are burdens and that it takes someone heroic to “put up” with us.
Moms truly think so little of Jesus, it’s breaking my heart.
Tara: Let’s also not forget that the real reason she’s checking in is to check the legitimacy of the engagement.  Jesus has told her that they are engaged, but Lena needs the Authorization of a nondisabled person to make it true.  Jesus’s words do not carry weight on their own.
STEF AND LENA - THEIR ROOM, THAT NIGHT:
Lena: So…Emma is not wearing the ring.  I called her into my office today just to, you know, check in, and thank her for supporting Jesus.
Stef: Well did you happen to ask if they were engaged?
Lena: No, I didn’t want to embarrass her.  But she seemed perfectly fine.  Everything between her and Jesus seemed status quo.  You know, I really just think this whole engagement thing is all in his head.
Stef: Alright.  Good.
Lena: Oh, also…I invited her to Mike and Ana’s party tomorrow.  
Stef: Oh?
Lena: If she’s the one keeping Jesus on track, I really don’t think keeping them apart is the best idea, do you?
Stef: I guess not.
Tonia:  Emma’s keeping Jesus on track?  So Jesus gets no credit for his own progress?  (And way to micromanage everything Lena, after you said that Emma couldn’t come to the party…)
Tara: Notice how Lena is concerned with not embarrassing Emma.  She is unconcerned about embarrassing Jesus because she feels he is not himself - just a pile of TBI symptoms. 
JESUS AND EMMA - FRONT DOOR, AS EMMA ARRIVES FOR THE PARTY:
Jesus: [smiles] Come in.
[They kiss]
Jesus: I missed you so much.
Emma: I missed you, too.
Jesus: You look amazing.
[Emma laughs as Jesus looks at her in her dress.  They are still holding hands]
Jesus: Oh.  You’re not…wearing…the…ring?
Emma: Oh, yeah…  I was worried about your moms seeing it.
Jesus:  Don’t be.  They know we’re getting married.  And they’re totally cool with it, too.
Emma: [looks freaked out] Really?
Jesus: Yeah.
[Emma searches her purse, finds the ring and puts it on]
Jesus: Come on.
Tonia:  Really, though, what else is Jesus supposed to think?  When Moms don’t talk to him.  They haven’t said a word to him about his being engaged.  I’m sure he figures if they didn’t approve he’d know it.
And Emma accepted the ring!  (I know I said it before, but it bears repeating, especially as Emma’s carrying it around in her purse!)  I resent the fact that Moms are persisting in believing it’s “all in Jesus’s head” when no one around him has given him a reason not to think it’s not true.
Emma said, “I can’t marry someone who isn’t going to school.”
Not, “I can’t marry you.”
So of course Jesus thinks if he goes to school, Emma will marry him!
Tara: Right.  These are not Unreasonable Assumptions.
ANA, MIKE AND ANA’S PARENTS, VICTOR AND ELENA AT THE PARTY:
[Victor spots Gabe across the yard]
Victor: Is that…?
Ana: Yes.
Elena: What’s he doing here?
Mike: Oh good!  Gabe decided to come!
Ana: Stef and Lena are letting him live here while he helps Jesus with a school project.  Please be nice.
Tonia:  A reminder that Gabe is here only and essentially as a pity gift for Jesus and that as soon as Moms are tired of having him there (which, they were from the start) Gabe won’t be there anymore :(
JESUS ARRIVES AT THE PARTY IN THE BACKYARD:
[Jesus spots Gabe across the yard and acknowledges him happily.  Then, he stops to say hi to Victor and Elena]
Victor: Look at this guy!
Elena [hugs Jesus] So handsome!
Jesus: [hugs Victor.  Poses for a picture with Victor and Elena.]
Tonia:  The moments with Jesus, Victor and Elena were very much background, but I noticed them, because of how happy Victor and Elena were to see Jesus.  How warmly they received him.  How, to them, he is the very same boy.  With the very same worth.  To whom they give the same love and the same respect they ever did.
Especially as Jesus missed out on spending time with Grandma and Grandpa Adams, it was nice to see him being loved on by Victor and Elena.
Tara: This was a much-needed breath of fresh air.
STEF AND EMMA - PARTY:
Stef: Emma.  Hi. [hugs her.  Emma looks uncomfortable probably because she knows Stef is not a hugger.]  How are you?  
Emma: Good!
Stef: Good to see you!  Thanks for coming!
[Emma gets water from the water cooler.  Stef sees the ring on her finger]
Stef: Oh!  The–  That’s the, um, the ring that Jesus gave you?  
Emma: Yeah.
Stef: [takes Emma’s hand] Oh, it’s–that’s–  Wow, that’s very pretty…
Emma: Thanks.
[Stef tries to catch Lena’s eye across the yard.  Eventually gets her inside with some excuse about Stef having something in her eye.]
Tonia:  Again, Stef can barely disguise her disgust for the ring Jesus made.  She says it’s “very pretty” but her tone says the ring is dirty, cheap, and worthless.
Tara: I think it may have been less disgust and more Oh-My-God-I-Can’t-Believe-It’s-True-I’m-Freaking-Out.
STEF AND LENA - KITCHEN, CONVERSING IN HUSHED TONES:
Stef: She’s wearing it!
Lena: What?
Stef: The ring!  The engagement–it’s out of Jesus’s head and on her finger!
Lena: [sighs] Well, maybe she doesn’t think it means what JESUS thinks it means.
Stef: I think we need to ask her: ARE THEY ENGAGED?
Lena: Right now?  In the middle of the party?
Stef: No, not now.  But soon.  Very, very soon.
Tonia:  Because God knows now that Jesus has a brain injury, he clearly does not know what being engaged means… <– Sarcasm  Moms, please stop this nonsense.  You need to start accepting the child in front of you.  Because your ableism, your lack of confidence in him, your abuse of him is harming him more profoundly than his brain injury.
Tara: Um yeah. It was out of Jesus’s head the moment he proposed.  Catch up, Moms.  And stop being gross.
JESUS AND GABE - PARTY:
Jesus: Hey!
Gabe: Hey!
Jesus: Did you talk to Ana yet?
Gabe: What?  No!  No, I’m not going to, Jesus.  This is her engagement party.
Jesus: Maybe that’s why she invited you.  So that you’d realize that this is happening and you would say something.
Gabe: [considering]
Jesus: Come on.  What’s the worst that happens?  She says no?  [Ana walks up, Jesus tells Gabe under his breath] Say something.
Ana: Hey!  Glad you came!
Gabe: Yeah, I’m not so sure your folks feel that way…
Ana: Oh, they’re fine.  I promise.
Jesus: I am gonna go grab some food.
Tonia:  Jesus, still working so hard to make sure Gabe is happy.
Tara: In this week’s episode of AfterBuzz TV, Brandon Quinn who plays Gabe was being interviewed.  He made a point to say that the episode made it seem like Jesus was leading Gabe, but that actually those thoughts had been in Gabe’s head all along.  Jesus is not being Unreasonable here.
Adriana (Jesus and Mariana’s bio cousin, and the official photographer for the party): All right!  Let’s take a birth family photo!  Come on!
Jesus: Come on! (Jesus, Ana, Gabe and Mariana all stand in a line, arms around each other)
Adriana: Okay, everybody, get close!
Victor (looking on with Elena) They are a beautiful family.
[Stef and Lena look uncomfortable and do their best not to watch as Adriana takes the picture.]
Adriana: Three, two, one!  Perfect!  Oh, it’s so cute!
[Jesus takes the camera and shows the picture to Ana, Gabe and Mariana.  Jesus and Mariana are really happy.]
Tonia:  Moms’ reactions to this picture is just aggravating to me.  Your kids have biological parents.  One of those biological parents is getting married to Stef’s ex.  You both agreed to host their engagement party at your house.  So your twins’ biological family is going to also be present.  
We saw back in Quinceanera, that Jesus and Mariana have very few pictures of themselves from when they lived with Ana.  Mariana kept one in her room in the pilot, that Jesus ripped.  In the Quinceanera photo montage, there is one baby/toddler photo a piece for the twins.  They go from being babies to five in no time flat.  They had maybe one picture with Ana.  They have no pictures with Gabe, and certainly none of the four of them together.
in short?  This picture is important to Jesus and Mariana.  Moms have a ton of pictures with their twins over the last eleven years.  You can’t let Jesus and Mariana have this one with Ana and Gabe?  It’s probably the only one they’re ever gonna have.
Stef and Lena have had the privilege of having family pictures.  They have so many they probably don’t even consider it a privilege.  But to be photographed with a biological parent or parents is a privilege.  To get to see your own features reflected back in someone’s face. To have proof that you look like them.  You came from them.  To see your smile in their faces.
Jesus and Mariana look so happy that this picture is being taken.  I wish Moms at least tried to act supportive.  After all, when the party ends and everybody goes home?  Jesus and Mariana are their kids.  The twins know it and so do the Moms.  I just wish they could have been happy their kids get to have this moment with Gabe and Ana, and this picture, which, they might never get an opportunity to get again.
And particularly after Victor and Elena talk genuinely about “what a beautiful family” they are, Moms’ reactions just seem rude and immature…
Tara: Yes, it is a shame that they seem so threatened by something so small that will mean so much to their kids.
JESUS AND EMMA - PARTY, LISTENING TO BRANDON AND GRACE SING FOR MIKE:
Jesus: Someday soon they’re going to be throwing a party like this for us.
Emma: [looks uncomfortable] Be right back.  [She walks in the house.  Lena sees this.]
Tonia:  Ugh, Jesus is so happy.  And again, no one is telling him the truth.  Stop lying to him, please.
Tara: She still can’t treat him as fully human by giving him the dignity of the truth.
MARIANA AND JESUS - PARTY, TOASTING ANA AND MIKE:
Mariana: Hi!
Mike: Hi!
Mariana: That was beautiful, Grace and Brandon.  Ana, I just wanted to say congratulations.  I’m so happy that you found Mike.  He’s an amazing guy.  And you guys are totally soulmates so… I’m so happy for you!
Jesus:  Uh, yeah!
[crowd laughs gently]
Jesus: So, I, um–  Well, I guess I never really…uh, thought that I’d be at an engagement party for my birth mom.  I never really thought that we’d have a relationship with you.  Or you, Gabe.  But um…one thing that I know is that it’s never too late.  Even if you think it is.  So, yeah, that’s pretty much what I wanted to say…
[crowd laughs again]
Tonia:  I was so secondhand embarrassed when Jesus was giving this toast, but it wasn’t out of bounds. 
It annoyed me, though, that we heard Stef say: “Hear, hear!” to Mariana’s toast and when Jesus is speaking, she and Lena are just standing there with their arms crossed.  Like they are waiting for him to say something wildly inappropriate…
Tara: Very sweet toasts. 
[Brandon shepherds Jesus aside, whispers]  What the hell was that toast?!
Jesus: What do you mean?
Brandon: This is my dad’s engagement party!
Jesus: Okay.  Look.  Brandon, if Gabe and Ana still have feelings for each other?
Brandon: It’s none of your business!
Jesus: Do you really want your dad to marry Ana if she still loves Gabe?
Brandon: You’re unbelievable.  Just stay out of it, okay?
Tonia:  One of the only moments in the episode where ableism was not at the center of the family’s interactions with Jesus.  But he’s still shown to be out of line here.  Like he needs to be taken in hand.  So maybe the ableism isn’t so distant as I thought?
Tara: Just because Brandon read into the toast doesn’t mean that it wasn’t completely sweet and appropriate.  Jesus does not need scolding. Ana, Mike and Gabe are all grown adults.  Let’s just take a breath.
LENA AND EMMA - LIVING ROOM:
Lena: Hey.  What are you doing in here all alone?
Emma: [tearfully]  Sorry.  I was just taking a break.
Lena: Honey, are you all right?
Emma: [nods, holding back tears]  I really want Jesus to get better and go back to school, but I’m not ready to be engaged.  
Tara: Emma is verbalizing the trope that Romantic Love Cures Disability.  She thinks because she agreed to marry Jesus, that he will not only go back to school but Get Better. 
Lena: Jesus’s recovery is not your responsibility.  It’s his.  And it’s mine and it’s Stef’s.  And I’m so sorry that I didn’t think about the burden I was putting on you.
Tonia:  Lena!  Seriously? Jesus’s recovery is his responsibility?  What kind of ableist ridiculousness is that?  Your son has a brain injury.  No matter how hard he works, he will always have a brain injury.  You cannot change him.  He cannot change himself.  Please stop trying and start being there for him.  He doesn’t need a drill sergeant, another doctor or another therapist.  He needs a mom.  
He is not a burden.  He’s your son.
These kinds of depictions of disability…they like…slowly seep in. And when we must watch them over months?  Without a single contrary voice daring to speak up and say, “This is wrong?”
It feels like Moms are right.
And that is devastating.
Tara: re·cov·er·y rəˈkəv(ə)rē/noun 1. a return to a normal state of health, mind, or strength.
Again, usually there is a certain amount of improvement to be expected post-brain injury.  A certain amount of recovery, if you will.  But the brain injury will never go away.  
Burden, Lena?  Kick me in the chest again.  As disabled people, we are constantly expected to justify our existence because of ableist beliefs like this.  The belief that disabled people are burdens leads to the justification of our murders at the hands of our caregivers.  
Emma: So you’re not okay with us being engaged?
Lena: No.  No, of course not.  Honestly, honey, we just thought that maybe it was all in his head.  We should have asked you.
Emma: It’s okay.  I think it sort of IS all in his head.  I never said that I would marry him.
Lena: We’ll talk to him, okay?
Emma: Would it be okay if I talked to him first?
Lena: Yeah.  Yes, of course.  Come here.  [Lena hugs her]
Emma: Thank you.
Tonia:  Emma, you gave Jesus a nonverbal yes by accepting the ring.  You didn’t give him solid no, verbally or otherwise.  You put the ring on today in front of him.  That’s not in his head.  It’s a reasonable conclusion to draw.
Tara:  Lena tells Emma OF COURSE WE DON’T APPROVE, but has said nothing to Jesus over the past week to indicate this.
[Stef comes in, Emma says “hey” as they pass.  Stef comes to join Lena in the living room]
Lena: Maybe my mom was right about indulging Jesus.  
Tara: Indulging him how? I am seriously asking. 
Lena: I can’t take the path of least resistance just because I’m afraid of the outbursts.
Tara: Hello Ableism, my old friend… It’s the tried and true TBI = AGGRESSION stereotype.  Can’t say that I’m happy to see you.
Stef: Hey.  There’s no “I” in this.  It’s “we.”  We’re not giving up, okay?  We’re not giving into this thing with Jesus.  We’re going to fight to get our boy back.  Whatever treatment it takes, we’ll try ‘em all until something works.  Okay?  When are we gonna see that doctor in LA?
Lena: In a couple weeks.
Stef: Okay.  So in the meantime?  We take away that treehouse and whatever else we have to, to get his attention.
Tonia:  So many things disturb me in this conversation:
The notion that they are in a “fight” to get “their boy back” when Jesus is literally right there in front of them.  He did not get body-snatched or stolen.  
That they are cavalierly going to try “all” the treatments.  Including shock therapy, because that’s what’s in LA.
Their method of “getting Jesus’s attention.”  Perhaps the treehouse was a project that Moms let Jesus do out of pity or indulgence, but that is not on Jesus.  He has done nothing that would merit their arbitrarily revoking the one thing that’s giving him any joy.  It’s been days and I still, truly don’t know what Jesus did wrong that would merit such a crushing consequence.
Also?  By taking away the treehouse?  They will be sending Gabe away.  The only person other than Emma who Jesus has felt like he can confide in.
I keep saying this - but it keeps being true - I am so beyond devastated for what this will mean for Jesus.
Tara: This “thing” with Jesus?  It is called disability.  It is not something to fight, but rather something to accommodate. His brain is not holding him hostage.  It is working overtime to create new pathways - trying to help him.  
There is no cure for brain injury.  There is adaptation.  Accommodation. Apology when you make a mistake. Patience. Presuming competence. Respect. Love. 
Shock treatment  is abuse.  It induces seizures and causes subsequent brain injury.  To continually pitch this as a legitimate treatment option is irresponsible and harmful.  
It makes me sick that while Moms would never consider ECT for each other or Jude to cure their homosexuality, they would jump at the chance to use it on Jesus. 
Please writers, value disabled life more than this.
And as if the looming threat of torture is not enough, Moms are now taking away the treehouse and presumably Gabe.  
Because existing as a disabled person is wrong and apparently requires punishment.  
JESUS AND EMMA - JESUS’S ROOM:
Jesus: [smiling]  There you are.  Should we, uh–  Should we shut the door, or?
[Emma does]
Emma: I love you.
[Jesus smiles]
Emma:  But…  But I can’t wear this if it means what you think it does.  [Emma takes off the ring and gives it back to Jesus]
Tonia:  It means engagement, and you knew that when you accepted the ring, Emma.
Tara: Yes, let’s not keep up the facade that it’s all in Jesus’s head.  Just admit that you didn’t want to hurt his feelings and that’s why you accepted the ring.  Tell him you don’t want to marry him.
Jesus: Wait.  Wait, wait, wait, um…  Are you…breaking up with me right now?
Emma: No.  I’m…not.  But we’re too young to be engaged, Jesus.  And I can’t be your only reason for going back to school.  You need to do that for yourself.
Jesus: Wait.  I’m sorry.  So that’s why you said yes. [He drops the ring on his desk]
Emma: I never said yes.
Tonia:  OMG Emma, just say you’re breaking up with him!  Stop pitying him.  You’re not doing him any favors by staying with him because you feel bad for him.
Tara: The truth’s out. Even accepting Jesus’s proposal was a manipulation.
Jesus: Well, if that’s how you feel then maybe we SHOULD break up.
Emma: Jesus.
Jesus: No, I’m not a charity case!
[Mariana overhears, comes into the room]
Emma: I never said that you were!  
Jesus: Well you think that I can’t survive without you?!
Emma: That’s not what I meant!
Jesus: You know what, Emma?  I don’t need you.
Tonia:  Yes, Jesus!  So happy to hear him tell Emma he is not a charity case!  It feels so beyond gross to know that you are a “project” to someone, not an equal.
Tara: Trust that we can tell when you hold these beliefs about us.  And consider whether you would want someone to hold these beliefs about you, right now, as you are.
Mariana: Yes, you do, Jesus!  She stuck by you this whole time!  She’s been, like, the best girlfriend ever!
Tonia:  Again with the Nondisabled Savior nonsense.  Stop it, Mariana.
Tara: You do not get to tell Jesus what he needs, Mariana.  He can figure that out for himself.
Jesus: Oh, and now, all of a sudden, you like her?  You guys are friends again?  Well, that’s great, but you know what?  Leave me the hell alone.
Emma: Jesus.
Jesus: I mean it, okay?  Let’s just call it.  
Mariana: Don’t do this.
Jesus [to Mariana] You need to stay out of this.  [To Emma]  And if you don’t want me forever, then I don’t want you at all.  So just go.
[Emma and Mariana stand there as Jesus turns away]
Jesus: Just GET OUT, Emma!
[Emma leaves]
Mariana: You’re so stupid.  [leaves too]
Tonia:  So again, we have Emma and Mariana not taking Jesus seriously.  He has to tell Emma to leave four times - has to raise his voice and yell before she will.
Tara: And stupid appears to be Mariana’s go-to insult for Jesus these days.  This word is second only to the R-word in terms of the harm it does to those with disabilities, particularly those with brain injuries.  She does not respect him or his decisions. She does not view him as competent.  It is heartbreaking that even his twin thinks so little of him.
Jesus [slams his hands on his desk.  Looks up and out his bedroom window to see Moms talking to Gabe and Gabe walking away from them]
Tonia:  And cue my heart breaking some more, because this moment?  Is Moms telling Gabe he has to move out because they are taking the treehouse away from Jesus.  And Jesus has no idea yet. :(
Tara: This just keeps getting worse.
MARIANA AND EMMA - FRONT STEPS:
Mariana: Emma!  He doesn’t mean it!
Emma:  I know.
Tonia:  Ladies, lets have a talk:  Jesus does mean what he says. Feeling like a charity case sucks and it’s completely reasonable for him to want to break up with Emma after finding that out.  
Tara: Yet another version of Not Presuming Competence.  Saying Jesus “doesn’t mean” something because he is disabled takes away agency over his own life.  It is another means of nondisabled control.
Mariana: He’s gonna get better.  He really is.  
Emma: When?
Mariana [hugs her]  I miss him, too.
Tonia: Jesus may make more progress, he may not.  He has a brain injury.  That did change him, but not the way you think.  Because it did not steal him.  He is not gone.  He’s right in front of you.  And he’s rightfully angry that no one is treating him with any dignity or respect at all.
You both are the ones who need to change.  Accept Jesus as a person.  Talk to him, don’t just react to what you think he might do.
Tara: This conversation spoke to my worst fear post-brain injury - that I was a different person.  An unlovable burdensome shell.  
felt so different in my brain and body that I could not fathom that my family’s love for me had not changed.  Despite their reassurances, this is still something I am struggling to come to terms with almost 20 years later.
Mariana and Emma don’t love Jesus for who he is now - they tolerate him.  
They’re waiting for the “old Jesus” to come back.  And that specific version of Jesus does not exist anymore.  This is a new version of the same person.  
And the notion of “getting better” in the colloquial sense will not happen with Jesus.  His brain is injured.  And while the brain is able to make new pathways, the injury itself will never go away.  Waiting and expecting him to “get better” in the way one “gets better” from a broken leg is an exercise in futility.    
JESUS AND MARIANA - HANGING POSTERS AT SCHOOL, THE NEXT DAY:
Jesus: You know, Stratos doesn’t even care about Anchor Beach Academy.  He just wants revenge against Anchor Beach ‘cause of Nick!  
Mariana: [shakes her head]
Jesus: I mean, it’s crap! If anyone deserves revenge, it’s you and me because of what Nick did to us.
Mariana:  You’re right.
Tonia:  It’s interesting.  This is the first time I can recall that Jesus has mentioned Nick and what he did to both of them.  (Previously holding Mariana at gunpoint and then in a later episode, knocking Jesus out, causing his TBI.)
Tara: This strongly mirrors my experience.  It took months for me to 1) heal physically enough and 2) to even begin to come to terms with what happened to me to be able to discuss it.
[Jesus and Mariana continue down the hall]
Jesus: I gotta go to the bathroom.
[Jesus stops short of the bathroom to look at the model of Anchor Beach Academy]
LENA AND STEF - KITCHEN:
[Mariana and Jude walk in]
Lena: Hey!  How’d it go?  Did you get the posters hung?
Jude: Yeah.
Mariana: No one was there.  It was perfect.
[Lena’s cell phone buzzes with a call from Drew Turner, principal at the kids’ school]
Lena: Hello?
Drew: I need you to come to the school now.
LENA AND DREW - AT SCHOOL:
Drew: So, I come in today to get a little work done, and I find this.  [Drew gestures to the model of Anchor Beach Academy, smashed]
Lena: Oh my God.  Who did this?  Why would someone–
Drew: No idea!  So I checked the security cameras…and your kids were the last ones in the building.
Tonia:  I don’t like the insinuation that Jesus hulked out and smashed the Anchor Beach Academy model.  And it makes me really nervous because I still feel like Moms have it in their back pocket to send him away, especially if they are sure it will “help.”
Tara: Hmmmmm… I wonder who will be the fall guy? :/
JESUS - GARAGE APARTMENT:
Jesus [knocking]  Yo, Gabe!  
[Jesus opens the door to find Gabe gone.  His stuff is gone.  The bed is stripped.  Blankets folded on top.  There’s a letter left behind, Jesus’s name is on the envelope.  He sits down, holding the envelope.  His face is stunned and sad.]
Tonia:  No matter what that letter says, you can bet Jesus is going to take Gabe’s leaving personally.  
(And I love how Moms did not even bother telling Jesus and Mariana that Gabe moved out.  So Jesus - and eventually Mariana - will have to find out whenever and however, and be shocked and hurt.) <– Sarcasm
So now, Jesus doesn’t have Emma or Gabe to talk to and confide in.  I am so worried for him.  I hate that Moms did this.  :(
Tara: This show gets harder and harder to watch every week.  We feel a sense of duty to speak out against the horrific offenses against our community.  
Representation matters.  
TV teaches people how to treat people who are different from them.  
But we are hurting.  And we are tired.  And we have never been more glad that the hiatus is just a week away.  Because we need a break.
And during that break, we will hope that our words have made a difference.