self-advocacy and the power of no

*

Respect your elders, young man.

Always comply with the authorities.

Listen to adults.

Do what you’re told.

*

Good listening.

Good girl!

Great job following instructions!

You did exactly what I asked! You get a sticker on your chart!

I did just as I was told! Hooray for me!

~

As a family, we love to laugh about how cute Katie was when she was tiny and refusing to do something. Her typical method of defiance was, well, adorable. Mostly because her preferred way of expressing her displeasure at something was to scrunch her nose, cross her arms across her chest, set her little feet in her tough girl stance and issue a firm, “No!” followed by “No liiiiiike it!”

As cute and clearly harmless as her bluster might have been, it was effective. There was no misunderstanding the message – “Back off, Bucko “cause I’m not buying what you’re selling.”

Brooke’s refusal mechanism was far less reliable. With no other way to communicate displeasure (or fear or discomfort or pain or overwhelm), she screamed.

Brooke’s language development was echolalic, both delayed (often called ‘scripting’) and immediate (known as ‘parroting’). For example, if we asked her if she’d like a drink, she’d ‘answer’ by saying ‘drink.’ With little to no understanding of what was happening, neither Luau nor I recognized that she was not actually responding to our question, but instead just echoing the last word she’d heard.

Encouraged by her non-answer answer, we might offer some options from which she could choose. “Would you like milk, juice, or water?” To which she would respond, “Or water,” and we would dutifully run off to go get her water. When we handed it to her, she would scream.

Perplexed, we would try to figure out what was upsetting her. “Do you want ice in your water, Brooke? A different cup? Is it too cold? Too hot?”

She had no reliable way to say, “I’m not even thirsty, you jackass. And if I were, I’d want milk. Why are we still talking about the damn water?”

She had no way to say, “No. I don’t like it.”

This weekend, I had the honor of attending a meeting of our local chapter of the Autistic Self-advocacy Network (ASAN). I could talk about the meeting for days, but for now, I bring it up because it was there that a young woman with autism (her preferred language for self-description) said, “It is SO important that people with disabilities are taught to say, ‘No’.”

I don’t remember what led to that sentence and I don’t remember what happened afterward. It was one of those seminal moments when the loose threads that have been swimming aimlessly in my brain find one another and I know that I will have no choice but to do the work necessary to sew them together into a coherent quilt.

Back in February, I was moved to tears by Sparrow’s post, No You Don’t on TPGA.

In that post, she talks about how important it is to learn to say, “No.”

She talks about what happens when our children can’t.

I was raped. I was abused — domestically and otherwise. I was molested. I was taken sexual advantage of. I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies.
spacer
Children like yours — children like I was — are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.

I ached for her. And for my children. For my beautiful ten and twelve year-old girls. I thought about how important it is for me to teach them BOTH that they can and should and MUST be able to say no. It is my job as their mother to ensure that they understand and are able to assert absolute domain over their own bodies, their own rights to self-determination, their own individual wills.

With Katie, that will happen in conversation. With Brooke, it will be more complicated. But in some ways, it will be even more important.

Our children are vulnerable. All are, but ours far, far more than any others. Who better to victimize than people who can’t report their crimes, or who are likely not to be believed or understood when they do? Who better to lure into horror than children who trust by default? Who better to rape than people who were never taught to say no? Who easier to abuse than those who have spent their lives learning to comply with demands, no matter how uncomfortable?

In her 2005 post, The Meaning of Self-Advocacy, Amanda Baggs writes the following.

When one inmate in an institution fights back against the staff in defense of another inmate who is being brutalized, this is self-advocacy. I have only seen this happen once. She was brave and heroic in the genuine senses of the words, and she paid the price for trying to protect me.

When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy. When his initial peaceful methods are ignored in favor of restraining him and violently shoving him into a car so that staff can meet their schedules rather than listen to him, his decision to bite the driver is self-advocacy. I was there in the car with him.

When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy. That was me and too many others I knew.

When inmates of institutions (both traditional and those that masquerade as community), including those who are said to have no communication, devise covert means of maintaining communication and friendship in spite of staff’s attempts to stamp it out, this is self-advocacy.

When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.

Saying no can be a radical act. Respecting no when we hear it should not be. Hearing starts with listening — and with our kids, at least with mine, listening means watching. “No” can be hard to find or understand. But when a human being screams, there’s a reason. Brooke’s scream meant just as much as Katie’s “No like it.” My job wasn’t to just get her to stop screaming, it was to understand WHY she was screaming — and then to give her a better way to say, “No.”

In 2011, I read Kassiane’s post, Advocacy Begins With No, detailing her some of her work with a non-verbal nine-year-old boy.

What’s the first thing little kids tend to learn, to take power over their lives in small ways? The word “no,” right? I wanted C to learn to say no, learn that he could ask for things and get them, learn that he could say he didn’t want to do things and have his wishes respected. A lot of our time was spent playing, with him indicating he wanted or didn’t want things, and me putting into words “No, don’t take your block? Alright!” or something similar when he indicated in any way that he didn’t like what I was about to do, or did like or want something. I wanted to show him that adults could take his wishes into account.

So many of the methods that we use to teach our kids, ABA most saliently, prize and reward compliance. The lessons that our neuro-typical kids learn about pleasing people are magnified a thousand-fold by this systemic insistence on conformity and obedience. By a reward system that demands ‘appropriate’ or ‘expected’ behavior on the outside, regardless of what’s happening on the inside.

And, to be honest, it scares the crap out of me.

Two years ago, I wrote about a nightmare that I’d had about my girl being sexually abused.

I notice a hot tub a short distance away and consider getting in. I walk closer and find a clump of children in the tub. I see my girl, my Brooke, in the tub. She is naked. There is a little boy on top of her. His arms are around her shoulders, wrapping her in a tight hug.

She doesn’t protest. She loves hugs.

He kisses her on the lips, then gets up and moves out of the way.

I watch in slow motion – as this nightmare within a nightmare becomes clearer. There is a line of boys waiting for their turn.

Brooke has no idea what’s happening.

On Friday afternoon, my girl thought she had made two new friends on the school playground. She didn’t understand that they had been alternately teasing her and running away from her.

“You two are my best friends,” she had said, the moment before they finally turned their backs on her, whispered to one another, then turned back again only to roll their eyes at her before running away, leaving her standing alone.

As Luau tried to take her home, she said, “But we can’t leave my two best friends.”

I am woken by a jagged sob. It’s mine. My pillow is soaked with tears.

I am terrified.

Our children need to know that NO is available to them.

That they have the RIGHT to refuse demands.

That THEY control their own bodies.

That NO ONE has the right to hurt them – EVER.

That what THEY want matters.

And above all, that we are listening.

~

For further reading …

Advocacy Begins With No

No, You Don’t

The Meaning of Self-Advocacy

Emma Refuses to Get Off the Bus and A Self-Advocate is Born

The Cost of Compliance is Unreasonable

Self-Advocacy

23 thoughts on “self-advocacy and the power of no

  1. This recently came up for me, too. Along with it, was a conversation I had with two of my students, who proudly and happily told me that they were learning about strangers in their Health class, and how if a stranger pulls up in a car and offers them candy, to say NO and run away.

    It was all I could do to not launch into a diatribe about how that’s RARELY the way it happens, how saying “no” to strangers is important but that it’s also okay, and necessary, to say “no” to ANYONE, regardless of who they are, and even if we know them. How many individuals do we know who were hurt, in some way, by someone they knew? How many kids didn’t think they could say “no” because Daddy/Mommy/Grandpa/friend/whoever is “in charge” and can do whatever they want?

    So I settled for a casual, “Yup! You know, though, it’s okay to say ‘no’ to ANYONE. Even someone you know. If anyone does anything that makes you feel weird or uncomfortable, you can always say ‘no’ and go get another adult.” And I hoped it was enough.

  2. Jess, a while ago I read Kassiane’s post on TPGA and couldn’t at that point understand it fully. After living a year or two and doing a lot of reading some of my viewpoints are changing. The whole idea of compliance is often intertwined with safety, as in “No, you cannot run in the busy road” or “No, you cannot take that old man’s cane”. But how horrible is it to open our children up to dangers as a result of trying to keep them safe and alive now. These are the tough puzzles of parenting.

  3. I think this can apply to other situations also. My son was actually being “bullied” by the interim teacher while his regular teacher was on maternity leave. Even though my son is verbal, he did not know how to express to us what was happen. Instead he chose not to do his work for her or anything else that she would ask him to do. We found out she was treating him like he was, as my son put it, “a dumb, stupid person” which in fact he isn’t, he is the complete opposite, but her attitude and her not respecting him upset him very much. That was his way of standing up to her. It was a very long end of school year.

  4. ❤ this Jess! It’s such an important topic. Thank you for linking to Emma Refuses to get off the Bus. I get teary just thinking about that day. She still talks about it and brought it up just last night. The worst part was, even when she said, “No!” repeatedly, even when she said, “I don’t go to this school, this is the wrong way!” even then, no one listened to her. It wasn’t until she began screaming and biting herself that they finally thought to call me.
    I am so glad you’ve written about this, because coupled with arming our children with the importance of saying no, we have to educate others of the importance that they then listen and respect those words.

  5. Yes. And on the flip side, children need to learn to respect the “no” too. If no one respects them saying no, they won’t either. I hate even writing this, but I say this as a parent of three boys.

    • I think this is absolutely true. If you never respect anything your kids tell you, why should they ever respect what you have to tell them? They have a right to say no to certain things, just as we all do.

    • I agree. Our kids don’t get a free pass bc of autism. And learning to accept NO, goes a long way in being able to SAY no.

    • My boy does not have autism, but does have a slew of other challenges and diagnoses, his greatest at times being a total lack of impulse control. My repeated mantra to him is ‘no means no’. For everything that needs a ‘no’ answer. Because I want that to be his first thought when he hears the important ‘no’s in is future.

  6. Oye! This is such an important topic but it’s hard to read or think about. It’s scary stuff. This is the stuff that I REALLY worry about. Not the school grades or how many birthday party invites we get. I worry about bullying and abuse (in any way).

  7. K has no issue telling me or her teachers NO, but she follows along with peers, which is obviously the scary part. I’m always trying to teach both kids this whole concept of not going along with the crowd, or what any one individual wants them to do. What is PRIVATE. WHY it is private. What to do, who to tell, etc. We’ve had some issues with this, so it’s practically a daily conversation. They are so “trained” for the rewards and charts, etc, though…it can be tough to navigate. It’s def something to really make sure the school realizes, too…teaching that compliance isn’t always the right thing.

  8. Our biggest fear that our sweet girl would be bullied or abused by anyone in any way what so ever. Even a mean look can totally undo her. I worry……so so much.

  9. This post is wonderful, I may blog about this….as a parent who helped my two boys understand THEMSELVES…which then they could understand OTHERS and then UNDERSTAND that they could make a decision of NO, this is crucial for our kids. This is one of the many reasons I stopped ABA and started RDI, which its very BASIS is to help our kids become DECISION MAKERS….not people pleasers! Fast forward now and my oldest is 16 and youngest is 12 ( and two kids in there too haha) THEY UNDERSTAND Persective and have excellent self awareness. RDI stands for Relationship Development Intervention…www.rdiconnect.com

  10. This is such an important issue and I fear we (the general “we” as opposed to you and I) only ever just touch the tip of the iceberg.

    I have been working tirelessly, and without much support, to get Nik’s school to work with me to teach him not only the concept of NO, but the right of choice and expressing refusal; it falls on deaf ears or is given mere lip service. Then they wonder why there is a sudden increase in “undesirable behaviors” including eloping and self-injury. It’s heartbreaking and maddening as hell because I can’t be with him 24/7 and I can’t help him translate his needs. And even then, I don’t always understand what he needs either. But I try; I make sure he understands that I WANT to understand.

    This, everything you’ve touched on and MORE, is the reason that it is crucial to give EVERY person a means of communication — including teaching them to say the things we don’t want to hear.

    • See, this is exactly it, isn’t it? The ‘behaviors’ that are so clearly an attempt to COMMUNICATE. It’s heartbreaking when the focus is on the behavior itself and not WHAT IS CAUSING IT.

      And this …

      it is crucial to give EVERY person a means of communication — including teaching them to say the things we don’t want to hear.”

      A thousand times amen.

      Thank you. And if you need some back-up at school, I might know a few people 😉

    • Hello Niksmom — I totally understand what you’re going through. We’ve been dealing with this issue through most of our son’s schooling. What’s made a big difference is that in the last few years we’ve had “safety goals” written into his IEP. They’re really more self-advocacy goals, but the last thing a middle school wants is for their students to self-advocate! Instead, by framing them as “safety” goals, I talked a lot about how this would save them from being open to lawsuits (eg, “God forbid a student should force D. into taking a pill or other dangerous substance, and he would have no way of saying “No!” That kind of tragedy would certainly open the school up to litigation, and no one wants that…) My son had endured years of bullying, and inappropriate sexual contact, but he had no way of telling us until he began to type. Once he did, it was heartbreaking. Now I place the most emphasis on safety/self-advocacy goals, and I have high expectations for compliance. Does your son have a one-on-one aide? Can that person be your “eyes and ears” to make sure there is follow-through on safety goals? Because, of course, writing the goal is only the beginning, right? The real struggle comes with getting school personnel to comply!

  11. This has been a constant fear for me.. so imagine my thrill when one day, out of the blue on our way of the door, I ask my son if he wants his jacket or if he is okay. He attempts his communication, which was a little unclear so I got his jacket and started walking toward him.. He looks me dead in the eye, repeats what he said earlier and pushes my hands down.. in other words, “I’m okay mom. I don’t want the jacket”. This was huge!! He always had just gone along. There are no little victories!

  12. When my own daughter began involuntary vomitting (and only on school mornings), it was her comminication. She is very verbal but could not put words around what was bothering her. A series of direct “yes or no” questioning was the only way to bring it out. Once we got to the problem, she was able to provide details, but I beg all of you to “listen” to the NO’s you don’t always hear. It may be screaming, biting, anything….just pay attention and do your best to find out why because they are saying no and we need to hear it.

  13. Thank you for this. It’s huge! I have only begun to wrap my mind around it. You got my attention and the links for further reading are hammering it home. Thank you.

  14. Interesting-I shared on my page Sparrow’s blog from this page-It moved me so much-Only got one like from a dear friend so far-Usually my funny posts or pics of the family get likes like popcorn going off by now-No matter – this post had nothing to do with popularity-just awareness- I hope all of my fb buds are just being creepers and are still reading it-lol! ❤

  15. Pingback: Self-advocacy and the Power of No | CANadda

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s