Parenting Kids with Disabilities: Advocacy

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Previously on Summer Blog Series 2017: 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 / Autonomy and Consent / Conclusion

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.]

TOO SOON FOR SELF-ADVOCACY:

TW: Emotional abuse of a child

The first comes when I mention it's my turn for show and tell again:

"Maybe [my teacher] will give me another ride up to the front of the classroom!"

"What do you mean?"

"Well, the last time it was my turn, I was going to share the picture of [my new baby cousin.]  And [my teacher] said: 'You can just have a little ride!'  Then she just pushed my whole desk up to the front of the room, with me in it!  It was so funny!"

I don't add that my teacher didn't give me a choice that first time she gave me a "ride."  She just grabbed my desk and pushed it up to the front of the room.  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.

It was too quick and disorienting, but it made the other kids laugh.  It was better, her making them laugh about me than teaching them I couldn't do anything for myself, or calling me "princess."

"She doesn't need to do that.  You can walk up to the front of the room with your walker."

"I know," I say.

"Come here and sit down.  I need to talk to you."

I don't want to.  I just want this to be over.  But I do it anyway, because I have no choice.  (Just like in school.  I have to go along with what the teacher wants, or I'll be in trouble.)

"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'm crabby now that it's been decided I can't have my awful teacher do one fun thing that makes the kids laugh.  "I'll say it."

(Tomorrow.  Or I won't.  No one will know if I don't.  I'll be at school.)

***

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

(Nooooo....)

"I can do it myself..." I mumble, 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 repeat, feeling like every time my teacher called me princess, called me different, and every time she let the other kids boss me around, it's been 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 is getting thick.

"I can do it myself," I'm prompted, in a louder voice.  Angrier.  "No one's going to listen to you if you don't speak up."

"I can do it myself," I repeat softly, feeling humiliated.

"Louder.  You need to say it louder than that."

"I can do it myself."  It's not any louder.

(I can't say it louder.  This is actually as loud as my voice can go right now.)

"You need to be able to tell people these things.  Or else they're just going to keep doing things for you.  Say it again."

It's getting harder to get sound out.  My voice is getting tight.  CP is taking over where it doesn't usually, because I'm so stressed.

"I can do it myself."

(They'll laugh at me.  They'll help me anyway, because they think I'm a baby.)

"You've got to make your teacher believe it.  'I can do it myself!'  Say it just like that."

"I can do it my--"

I break.

I'm sobbing.  Devastated.

(I'm going to be in so much trouble at school tomorrow.  Will my teacher put me in the corner like the bad kids?)

I know I'm to blame. I should have known if I just told the teacher and the other kids, "I can do it myself," none of this would have happened.

But how was I supposed to know?  It's never ever been okay to talk back.  I have to listen to my teacher and do what she says...right?

But no.

It's wrong.

Because I'm wrong.

I'm still crying and I can't stop.  I have to stop.  But I can't.

***

I'm picked up and carried to a chair in the living room.  I'm in the chair.  I'm being held in the chair.  The chair is rocking.

(What is happening?)

"What's wrong, baby?"

(Baby?  I'm so confused.  I just got yelled at forever about not talking back to my teacher...  It's pretty obvious what was wrong.)

I can't say anything.  All I can do is cry into my hands.  Hide my face.

I don't know what's happening, or what to expect.  One minute, I'm being badgered to tears and the next I'm being rocked?  By the same person?

(When am I going to get yelled at again?  When will this be over so I can get up and get away?)

This is terrifying.  I feel so ashamed.  So bad about what my teacher's doing.  So bad about failing to do the thing I'm supposed to do.

I can't make eye contact.  I just stared at the dark blue fabric of the chair.  At the little brown dots.

(I just want to be done.  Please, let me get down.)

***

It feels like it lasts one thousand years.

Afterward - when being held is over and I finally am allowed to get down - I feel like all my movements are slow motion.  Like I have to be super careful. I don't yet know the word vulnerable.  I just know it feels like there's too much air on my skin.  Even though I'm wearing a sweatshirt and jeans.

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

***

Let me be clear: It was never my job as a nine year old child, to tell a grown woman in a power position over me not to do something.

I was not comfortable talking back to people in authority over me, ever.  And heaping all of that responsibility on a child's shoulders was too much.  I was still a child, and that should have been recognized and respected.

I should have been able to rely on adults in my world to speak up for me.  Not bully me and then comfort me when I broke under their pressure.

***

ADVOCATING FOR ME:

It's dizzying, the never knowing what to expect, especially when both extremes happen in the same year. 

One moment, it seems, I'm being harassed into speaking out against an adult's ableism, and the next?  The adults in my life swoop in to save the day.

My adaptive gym teacher isn't nice, but that also means she's not "too nice" in the way my classroom teacher is.

One day in spring, gym class is almost over, and we've been practicing some of the events for Track and Field Day in advance, because my adaptive gym teacher changes things so I can do them.

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

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

Her words stop me in my tracks.  My legs get tight like they always do when things are unfair.  I'm used to just taking an adult's word for things.  Not talking back.  Not questioning.  I had to just follow along, usually.  But this time, I have to know more.  So I work up all my bravery and ask:

"Why?"

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

I feel like crying.  She says this like a red, yellow or blue sticker is the same as a red, white or blue ribbon.  The ribbons everybody else in the whole school gets to earn.  Everybody but me.

She's talking to me like I'm a baby.

Just like all the other people at this school.

***

I'm quiet on the bus on the way home.  I feel so small.  Like I don't matter.  Like no matter how hard I try, it doesn't matter.

"What's wrong?" Tara asks.

"Nothing," I tell her, but I know she doesn't believe me.

We can't keep secrets from each other, so by the time we're home, I have to tell her everything. 

"[My gym teacher] said I couldn't win ribbons on Track and Field Day..." I manage, fighting tears.

"What?" Tara asks.  "That's not fair."

"I know," I agree.  "Don't tell Mom and Dad...please.  There's nothing they can do, anyway.  Hey, where are you going?"

"I'm just doing something..." she says.

I'm so depressed I don't even care what she's doing.  Until Mom and Dad came in.

"Tara said your teacher told you you couldn't get ribbons on Track and Field Day?" they ask.

"You said you wouldn't tell them!" I accuse.

"She was right to tell us.  Did your teacher say why you couldn't get ribbons?" they ask.

"Because she has to do it differently for me!  She said I could only have stickers!"

"What's her name?"

I tell them.  "Why?"

"Because we're going to have a meeting with her tomorrow morning."

"No!  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.

In this second instance, 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.

***

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