Wednesday, January 24, 2007

The Good Girl

It was truly frightening.

I'm just now getting my head around it.

Let me explain.

Several times a year I'm asked to do an abuse prevention workshop for people with disabilities. As part of that workshop we do a role play wherein Joe (who assists me in doing this workshop) plays a staff and in that role asks someone with a disability, "How was your day." The person with a disability responds, "I don't want to talk about it." Then the question is asked of the group, "What would a good staff do next?" The answer we are looking for is some version of, "The staff would say, 'That's OK you don't have to talk about it now. We can talk about it later if you want."

This role play is informative to me - it lets me know what kind of world that people with disabilities live in, how they see 'good' staff. I've had all sorts of responses to this question, "Put her in the side room," "Take supper away from him," "Lock him outside," "Don't let her use the phone," "Put her on the floor." Shocking, but a glimpse into how some staff use power in their reltionship to those in care. Disturbing, but not the point of this blog post.

Recently we did this role play and a teenaged woman with Down Syndrome volunteered to be in the role play along with Joe. She nodded that she understood her line, "I don't want to talk about it." So Joe said, "How was your day?" She responded, "Fine." We all laughed and I reminded her of her line, again after Joe delivered his line she said, "Fine."

I then asked her if she ever had a bad day, "No," she answered.

"Never?"

"Never."

Already I was wary but I explained that this was just acting like she sees on television or the movies. Grudgingly she gave her line, "I don't want to talk about it." We all cheered. She smiled.

Later, at break she came to speak with me. Her eyes were full of purpose and her blond bob bounced as she strode up to me. She waited politely for someone else to finish talking to me and then she said, "I'd never act like that." I asked her what she meant. She said that she'd never be rude like in the role play.

I asked her if she ever got angry. She said, "No, I'm happy."

"All the time?"

"All the time."

"Really?"

"It's not polite to be angry. It's not nice to answer back." She spoke with the emphasis of a zealot.

"But what if someone is hurting you? Would you speak up then?"

"No, I'd understand."

"You'd understand?"

"Yes."

"Would you tell your mom or dad if someone was hurting you?"

"No."

"Why?"

"You don't tell on people. You don't get people into trouble." This girl knew rules. Rules dominated how she thought.

I explained that this workshop we were doing was aimed at teaching her that if someone does something that makes her uncomfortable she needs to speak up and tell someone.

She shook her head. "I'm a good girl, I do what I'm told. I'm supposed to be polite. Not be a problem to people."

"If you were in a restaurant and they gave you the wrong order, would you tell them?"

"No, I'd eat what they gave me."

"Why?"

"It's nice. It's polite."

She was really scaring me now.

"But you are saying 'no' to me now, you are disagreeing with me."

Suddenly the realization hit her that she was actually speaking her mind. Her whole demeanor changed.

"Sorry," she said as tears sprung to her eyes.

"No, no, don't be sorry, it's good that you spoke up."

"It wasn't polite, I'm sorry, I shouldn't be a problem."

Now I'm kicking myself. I thought I had made a point that would further discussion, not end it.

During the rest of the workshop she never again volunteered for a role play, to assist in any way. She just sat with her hands in her lap and she smiled at me. That pasted on Down Syndrome smile that I understood for the first time (really) had nothing to do with Down Syndrome it had to do with being down trodden. She was entirely 'nice' for the rest of the time we were together.

She left the workshop by coming up to me and apologizing again. "I'm a good girl," she said as she walked away from me.

I never in my life thought that I would have to think about the politics of politeness. That children with disabilities, like this young woman with Down syndrome who grew up in the community, would be taught to be so ... so ... subservient. Her greatest fear was that she'd be a 'problem' to someone. Ummm. Well there are times she needs to be a problem. She needs to be vocal. She needs to disagree. She needs to stand against the wind.

Surely there is a balance between manners and assertion that we need to hit with people with disabilities. Surely parents, staff, teachers recognize that people with disabilities are already, by nature of their disability, vulnerable to preying others. Surely they shouldn't be made more vulnerable by being taught to 'be a good girl' at all times in all circumstances.

It is sheer common sense to teach people with disabilities to be who they are, find their own voice, determine their own boundaries. The world prefers 'cute, smiley, disabled people' in the same way they once preferred women to be 'gentle, docile and subservient.' Assertion is a skill - it needs to be taught, then encouraged, finally honoured.

I shake my head at my failure with her.

I get frustrated at my own inadequacies in situtations like these.

But I comfort myself by thinking, "At least I tried."

And maybe, maybe, one day, she'll think about what I said.

Maybe ... some parent, or teacher, or staff will read this ... and maybe ...

But I just don't know.

18 comments:

carole said...

A guy I know who uses a respite home near me is a 'good boy' who doesn't want to cause trouble.

He will, sometimes, and very timidly, tell me that someone was horrible to him. But I am merely a visitor. I have no link to this other person, and as far as I can tell, the horribleness happened a month ago. Maybe more.

Slowly, slowly, slowly, staff are working with him to let him know that it's OK to tell someone to stop what they're doing to you. It feels horrible poking him in the ribs (gently, wthey're teaching not torturing) and interrupting when he speaks. Slowly, slowly he is learning to say "stop it".

Too slowly.

What if someone hit him?
What if someone raped him?
What would it take before he said "stop it" and took action?

Luckily, his tormentor is less extreme than the examples above.

Yes Dave. It's scary

ballastexistenz said...

I think I used to be a lot like her, but fortunately not extreme enough that a good friend couldn't gradually teach me I didn't have to apologize all the time, I didn't have to look around to figure out what the rules were and then follow them, I didn't have to be afraid of thoughts (and I was afraid of thoughts, I honestly thought when she kept telling me to repeat to myself that I could think my own thoughts, that she was trying to get me killed).

Julie Porter said...

Mr. Hingsburger - I am a self-diagnosed stalker! I google you at least once per month to see if you will be presenting in Illinois (where I live). I can't tell you how excited I am to find your blog.

This story made me cry. I've worked with adults with developmental disabilities for about 14 years, and I've seen what you describe too many times. In my relationships with those I support, we often joke around and pretend to disagree and even be angry with one another. They don't know it, but these interactions really are informal role plays. Over the past few years, I have seen some people become much more comfortable with disagreeing with me. I always tell them that I'd much rather be cursed out with honesty than "pleased" with a lie.

Anyway, I'm sure I'll be reading your blog on a daily basis! Thank you for being an ongoing inspiration.

Rachel said...

Chilling.

Belinda said...

"I always tell them that I'd much rather be cursed out with honesty than "pleased" with a lie."
Julia's words really hit home. Isn't this what we want in all of our relationships.
Being set free from being "nice" is a battle common to all of us (except brave souls such as Dave)but the consequences of this bondage are more devastating to people with so little voice to begin with.

Michelle said...

This made me sad to hear how the young lady responded each time. It sounds like that has been something told to her over and over, by her parents?

You shouldn't feel like you failed her. This has obviously been ingrained in her over years and years - you had a day with her. Not enough time to undo what had already been done all those years.

I do hope she can take something away from the workshop though.

Belinda said...

Thinking back many years (Dave you might remember this person)we were trying to teach someone to make choices by giving him a drink we knew he liked and something like lemon juice as an alternate. He drank the lemon juice.

But one day I DID see him speak up! It was in a planning meeting. The nurse from "health services"(this was in a home that was a satellite of the institution) said he needed to go on a diet. He said "No," and she persisted and said, "Yes, you are fat." He said, in his gruff, unclear, yet VERY clear way,while pointing at her, "No,no,no,no--YOU--fat!" And she was!

I didn't quite know how to recover my composure!

Nickie said...

I found your post through the Disability blog carnival. I am so glad to have read this. Learning to say "no" can take a long time. I think you planted the seed with this young lady.

For years, I thought I had to accept the way people treated me. If they did something I didn't like, I didn't speak up. I am grateful that I had people who planted seeds. and taught me to say no.

Your words wwill probably come back to her when she needs them most. Thank you for sharing this story. It is an excellent reminder for all of us.

Shelley said...

As the mother of a child with DS your post obviously had a particular resonance for me. I spend a fair amount of time helping her to 'fit in' via various therapies and the rest of the time just loving her! I can see this scenario in her future (not desirable I know!) but at the moment the little brat thinks she is so clever whenever she is able to make us do what she wants which is reasonably often. I hope that that young woman has further opportunities to question why she has to be so 'good' all the time - and why she shouldn't be able to have her own thoughts and opinions too.

ballastexistenz said...

I just remembered something that happened to another client of one of my staff. (We were both in a supported living program and knew each other.)

That staff person stood up to people in front of him all the time, and sometimes got results. She said "No" to people and things happened. Etc.

He'd been in a group home most of his life prior to that and "no" wasn't in his vocabulary. But after watching her for a long time, he started saying "no" sometimes, and asking for things he wanted instead of passively accepting whatever he was given.

Unfortunately, the agency was a fairly corrupt one (they gave promotions to anyone who clients reported as abusive, as far as I could tell, and then labeled us bad/combative clients), and fired her once they realized she had some part in showing him how to stick up for himself.

But sometimes it takes watching someone else do it, to realize you can do it too. (It helped that this staff had herself once been a client and had a good understanding of the power structure from the other side.)

Anonymous said...

Squee! A friend on an e-mail list I'm on posted this comment, and I'm just amazed in the "small world" way. He was pointing out the similarities between the way disabled people and women have traditionally been taught to behave.

Anyway, the only thing I can say that might be useful is to suggest that you might try to think of something you might have done or said that would have had a better effect on this woman.

--Mia in Victoria

Xuxan said...

This reminds me of my fears when my son was young (now 23 with Down syndrome) and we would practice in the car saying no. I would say things to him to which he was to respond NO in a very loud voice. It took a long to get him to say no above a whisper. It's paid off. Now he says no to me when I want him to do things he doesn't want to do and sometimes slams the door to boot. A part of me is furious and a part of me is cheering him on!

captaiN dandY said...

The “Good Girl Syndrome” seems to go far beyond the recipients of service in the developmental disability field. I believe it is a learned behavior, with its roots established in the providers of service, afraid of appearing ungrateful for the crumbs they are given known as “funding”.

I don’t know how many times I’ve seen a provider silenced by the mere thought that if they advocated STRONGLY for an individual they’d piss off those holding the purse strings, jeopardizing their program. It happens here in Oregon all the time. It may also be a fear that they’ll develop a reputation as being “difficult”, and that hoped-for upward career move will be disrupted. Of course in the meantime the individual’s need goes unmet, but that’s the price paid for getting along.

It makes perfect sense to me that many folks with developmental disabilities turn into people pleasers when I look at their “role models”. I believe that it’s time for ALL involved in this field to stop being more concerned with playing nice and getting along, and demand that the entitlements of our people are realized.

Connie said...

Truly frightening indeed.

When my daughter was 15 I took her to a women's self-defense class. I told her I'd take it with her as moral support. My rationale was that I wanted her to feel empowered enough to know she could defend herself, and how, if ever the need arose. There was one other Mom there with her daughter, but most of the women in that class, young and old, were there as survivors of prior abuse. (Fortunately my daughter and I were not.) There were no visible signs of any physical disabilities amongst the participants.

It was a very powerful experience getting to know some of these women and learning of their struggles. Many of them were there as a result of finally coming to the conclusion that they did not deserve to be mistreated. For some of them it took years, and a great deal of counseling, to muster the courage to take that weekend long course.

It was very clear that the emotional scars ran so very deep.

I often wonder how those women are doing today...

Thirza said...

Oh, that is sad. But you know, maybe this is just the first baby step towards her realizing she can say no and speak her mind. I hate to think of her being such a "good girl" that she doesn't let people know if she's having some kind of discomfort that are the onset of a medical crisis or something.

Kat said...

Thank you for this post. Very well said.

My son has autism. He recently suffered verbal and emotional abuse from an adult in his life. It made me realize the limited ability he has to defend himself in these situations (which makes him an easy victim). But the most appalling thing was that when he and I did speak up, many people wrote it off BECAUSE of his disability (well he has autism so he probably doesn't understand the humor... arg).

Corina Becker said...

I have something of this that I'm trying to fight off. As a semi-dependent, I find myself complying with my caregivers' wishes and "being good" because I am afraid that if I speak up for myself or disagree with them, that I would be left to fend for myself, without knowing how to do so. The prospect of this is so frightening, that I have endured a lot of hurt.
It's a survival tactic.

However, it's wrong. It's abuse, and it's wrong. And I hope that the women and others learn that it's okay to stand up for yourself, have an opinion and disagree. (be polite, but it's okay to disagree)

What helps a lot is to create an environment where having an opinion or making a choice is not bad, and is encouraged. Too many of us, I think, live in situations where we purposely will agree because we think that it's what we're suppose to do, and in order to keep things calm, and get the supports we need. We don't want to be seen as a bother, or be a burden. This can also be by just not saying that something, even a medical issue, is wrong.

Thank you.

Anonymous said...

I feel like as people with disabilities we're constantly expected to improve. To act less disabled. I know for me, this constant pressure and the reprimands and rebukes that have gone with it throughout my life have encouraged me to develop this good boy/nice guy mentality. I can't stop being disabled, and people are always frustrated with me because of my disability, but if I'm nice and helpful and submissive, maybe they'll appreciate me anyways. It's a very negative behavior. Of course, inevitably the people around me start getting frustrated with me because I'm so accommodating.