Sunday, August 26, 2012


Continued from yesterday (thanks for all the comments).

Please note this what follows written yesterday and not edited as a result of the comments.

... I was absolutely stunned by what she had said. Before continuing, though, I need to say that I immediately understood what was happening. I've seen the 'inclusion run amok' approach to both parenting and service provision. The idea that people with disabilities should only interact with those without has taken strong root in the minds and hearts of many. The irony of including by excluding is obviously not considered. Even so, though I've seen it done to others, I've never had it happen to me. And I didn't like it. Made dispensable. Made irrelevant. Made unwelcome.

There was little time to do anything or say much.

And many will not like what I did.

I spoke to the boy: "I hope no one ever does to you what your mother just did to me." My voice would have communicated that I meant what I said. I couldn't speak to what he felt, I couldn't make that assumption, but I could speak, with authority, about how I felt.

Then, I took a breath, leaving space for protest. No one said anything, so I continued, "Sometimes other people with disabilities know what people without don't. Like what it's like to sit in the front seat, rather than being put into the back."

Mom, regained herself, shocked at what I'd said about her behaviour. Without speaking she grabbed hold of the handles on the back of his chair, and began to push him away. Never has a child, surrounded by family, seemed so utterly alone. He grabbed hold of his tires and held hard. For a second she was unable to move him. He was near crying when he asked, "Does it run well?"

I said, "It does," as he was forcibly pushed away.

It's time the disability community spoke up about COMMUNITY and fought back against the tyranny of the ideas of others.

But this may be hard.

A pipe dream.

Because one of the first things I noticed after becoming a wheelchair user was how my disability affected, not only those without disabilities, but those WITH. Often it seemed as if others with disabilities were embarrassed at being in the same place at the same time with me. As if they purposely avoided eye contact. As if they wanted it clear to others that THEY WEREN'T WITH ME. Sometimes I noticed others with disabilities plainly displaying their relationships with those without disabilities as a kind of, maybe, antidote to the assumption that they'd got off the same bus from the same home as me.

We've been taught, maybe indoctrinated, to believe that relationships with those without disabilities are the more valued. I've been lectured by some with disabilities that the idea of a disability community is ridiculous and the concept of disability pride farcical. Somehow, I believe (and I believe because I choose to believe) that we've been programmed by a constant barrage of messages of our own lack of value and that the value of others can rub off on us.


We have value.

We don't need to borrow the value of another.

And that boy.

The moment he grabbed his wheels in protest - proclaimed an independent spirit.

That moment gave me hope.


CL said...

Wow. I honestly love how you handled this. What you said was better than what I came up with even after thinking about it for a while. "I hope no one ever does to you what your mother just did to me." was the PERFECT response. That mother needed to realize what she was actually saying, and the boy needed to hear that it's not okay to treat people with disabilities -- people like him -- in that way.

I truly think you rocked this encounter. You maintained your composure and spoke the truth in a direct way that had a big impact. Considering you had no time to think, it's even more impressive that you handled it so well.

I feel terrible for the boy, who will probably go through some painful years where he realizes that his mother has problematic views of who he is... maybe it will be something like what I went through as a gay teenager (this is the closest I can come to relating).

But it's so much better for the boy to hear the truth, to be told that those views are not okay, even if it causes some temporary friction between him and his mother. He needs to know.

I still feel so terrible that you were treated that way. It really makes me want to cry.

Anonymous said...

Perfect response.

Team Lando said...

By pushing her son away from the disability community (and any relationship with "disabled people") it would seem that this parent is ensuring that her son will become a vocal part of that community.

Telling a 12 year old what to do without reasons almost guarantees that the 12 year old will do the opposite.

pattib said...

I so agree with CL. I'm sure that little boy will never forget you.

Nathan Dawthorne said...

Fist in the Air: Fight the power!

Rachel Douglas said...

I read it all at once. Uncanny thing...the mother gave me chills and the son gave me chills. One I fear the other I love.

Amanda said...

Thank you so much for talking to the boy and not his mother. I was stunned to read the comments on the last post all focusing on talking to the mother and not the boy -- inadvertently doing to him what the mother wants him to do to you, and completely missing the fact that the boy is the person in the situation who most needs you to talk to him. And then I was the only person who pointed it out -- and most people went on talking like I hadn't said a word. In a situation like that it is so much more important for the boy to be addressed directly by another disabled person than anything you could say to the mother could possibly be. And he is the only one of the two you could have possibly reached.

Pushing him away like that clearly against his will is horrible. I hope he can leave home at the earliest opportunity.

Purpletta said...

What a great response. Kids at that age hold on to those memories & I am sure what you said and showed will help him stay strong through a variety of challenges that will undoubtedly come his way in years to come. It is great to see how strong and determined this young person is - approaching you, asking questions in spite of the edict not to, holding his wheels. I can only hope that his mother will in time hear what you said, see what her son is telling her, and make some real changes in how she sees people... Sorry she treated you this way but so thankful for this boy that you were the one there for him that day.
Amanda, I agree about there being no non disabled people.

Utter Randomness said...
This comment has been removed by the author.
Utter Randomness said...

Amanda, thank you for the attack, I really wanted to be shamed for my inability to react quickly to situations. My comment yesterday was based entirely on my knowledge that I would have been too stunned to say much of anything and the people would have been long gone before I recovered enough to say any witty thing that you think you would have said in that situation. I'm glad you feel so good about yourself, but I feel that the judgmental, shaming tone of your comment was unnecessary. Yes, it is better to talk to the boy, and I'm glad that Dave said what he did, but I was being honest when I said that in a similar situation, I would be too tongue tied and stunned to say anything witty. Your comment made me feel like a terrible person for it, and I don't appreciate that.

Anonymous said...

as always you and Joe are beacons in teaching in avery kind way. Thanks alot.

crying and smiling all at once

Kristine said...

Wow again. I'm so impressed at how you handled that in the heat of the moment! So impressed.

This reminds me for the thousandth time of why I visit this blog so religiously. I often don't handle the pressure of the moment well, and I feel like reading these stories better prepares me for future moments. It's like running through all these practice scenarios. I may never encounter this exact situation, but possibly something similar, and certainly more subtle versions of the same thing. Hearing your experience, and the conversation around it, and just turning it over and over in my head, gives me a lot more to draw from next time I'm "in the moment."

I wish I could give that kid a hug and be his friend! He definitely reminds me of my own childhood. My parents never discouraged me from associating with other disabled people; that was never an issue. But they had their own well-intentioned ways of communicating my societal worth... And I definitely remember many occasions of grabbing my wheels in protest, both literally and figuratively! He's going to turn out fine, but it's going to be a tough, lonely road...

Belly (Liz McLennan) said...

Great response, Dave. I so admire your quick, clear-headedness.

As for the boy - the image of him, holding fast to his wheels, in defiance of his kind of breaks my heart.

Shan said...

To the other commenters I would say, every one needs compassion. Even mothers like this one. You don't know the journey she's on.

Have you always been just as enlightened as you consider yourselves to be right now? Have you NEVER struggled with prejudice of any kind? Have you never learned a slow and possibly painful lesson?

Belinda said...

Amanda, apologies for not acknowledging your point yesterday.

The nature of blog reading is that it is a hurried thing and responding is a quick thing too!I don't always have time to think of a comment as being a conversation with other readers, and just respond to the post.

I don't doubt that we all thought though, "Oh yeah!" when we read your comment. It was right on.

Purpletta said...

I really appreciate this blog & also the nice group of commenters - everyone here seems to have that commitment to the bigger picture and interest in learning from each other. As somewhat of a 'bystander' because I don't often comment, I have to share that you do seem like a neat group of people.
Utterrandomness, I thought about this scenario all day and didn't come up with anything clever to say I'm response. But I am so impressed with Dave's way of handling it and am thankful to have the opportunity to continue to learn from him and all of you. I respect your being honest in how you'd feel in that situation and think there are many of us who echo your sentiments. Hope you are okay and that you applaud yourself for being forthright. Amanda's comment spoke to me personally too and was a good reminder for me to listen more. Thank you for that, Amanda. And Shan, I am still angry at this mom but admire your ability to see the situation from that perspective - for me a good reminder to myself to examine and re-examine my own reaction to situations and people.
Thank you, Dave, for yet another great post and a lesson on the value of teachable moments.

Purpletta said...

Meant to say " response..."

Andrea S. said...

Amanda, I agree (and agreed) absolutely with what you said yesterday and wish now that I had said so then

Utter Randomness, after reading your comment here I went back and re-read what Amanda said and cannot see where she made any attack or any judgmental or shaming comments, nor do I see any comments that I would interpret as her feeling "so good about herself." I also don't see her singling out you or any one else for attention.

I can only assume that there is something happening in your life that made you read her comments in the way you did. I hope you are able to find a way to come to grips with whatever it is and feel better soon.

I probably would have been too stunned to think of a quick response on the spot too. I don't think that makes me a terrible person and I don't think that makes you or anyone else a terrible person ... it merely makes us people who don't think quickly in certain situations. I think it is more important to consider how we can respond productively in the future rather than spend time incriminating ourselves or feeling like a "terrible" person for being humanly flawed.

I don't think Amanda was trying to make anyone feel bad, because that's not the kind of thing she does. She tends to be very pragmatically oriented at identifying solutions and is usually not interested in laying blame on others. So when she emphasizes the importance of focusing on the boy rather than the mother, she is simply expressing concern for the boy, for the disabled person in this situation who is the most victimized party. (Yes, bad for Dave too, but the boy is a more vulnerable party because as a child he is still mostly under his family's control). And when she points out that she was the only person to really talk about the importance of talking directly to the boy yesterday, I don't read that as referring to people who were saying "I would be too stunned to think of a good response" -- I see her focus as being more on pointing out that suggestions for how to respond to the mother, although certainly well intended and coming from a good place, all rest on the premise that addressing the bigot is necessarily helpful in any way to the victim (the boy). And I don't read this as an attack on the people raising suggestions for responding to the mother either, just raising the concern that the people who are able to get past the "too stunned to think" moment are focusing our energies in the wrong direction. Which is NOT the same as saying that we're terrible people--it's simply a way of saying, "Let's get back to the important issue, which is finding the most effective strategy for helping the boy"

Hope this helps.

Rosemary said...

Love your response. Love the little boy's determination .

Anonymous said...

I didn't comment on the first post - as I wanted to see what Dave did. After all what Dave did is more important than what I think he did or should do.

I must say that I agree with Shan about judgment of the woman. After all - there are a lot of assumptions here. Dave assumed she was his mother - but maybe not - could be a caregiver or teacher or aunt out for the day. He assumed he was surrounded by family - but maybe not - could be students or a birthday party. We don't know the history nor the players of the scene so some grace needs to be given.

I'm just thankful that this terrible situation was met by someone like Dave - who has the experience and care to deal with something like this.

And as always - we learn from the things he shares.

Amanda said...

Andrea is absolutely right on all counts. I tend to come across different to some people than I actually mean things. At any rate I never intended to make anyone feel bad, and feel bad about that myself. Nor was my comment about making myself feel good.

And I was not referring to people's inability to come up with a fast response. I'm typically far more unable to respond quickly to thing than the average person, unless I have rehearsed similar situations beforehand, or unless it was a particularly good day for some reason. In fact I'm so unable to respond quickly to things that a lot of people's first impression of me in public situations is that I have no thoughts in my head at all, and I can't go out in public alone safely because there's too much probability that people will call the police to report someone "wandering disoriented and unresponsive", even if I'm going to the corner store for a bag of flour. I doubt I'd be able to respond to this situation quickly either. In fact I doubt I'd be able to respond at all, at least not fast enough before (as I predicted) the woman would start rolling him away, because I can't speak, turning on a communication device takes time, and so does typing.

But Dave didn't ask how I'd personally respond. He asked what he should have said. I fully expected that he might have himself been unable to respond, and I would never fault him or anyone else for that. I'm in less position to fault anyone for that than most people. Of course I also don't fault people for saying they themselves wouldn't have been able to come up with a response, because not all blog comments are direct precise responses to questions in the post. (Just in case anyone interprets my comment on the actual content of his question as "shaming" people who didn't respond to it precisely.)

Anyway, my response was entirely directed at comments that were clearly advice on what to say. I was honestly surprised nobody seemed to be thinking through who was the most affected by the conversation, and how he would be affected by such responses. I wondered how many people were thinking to imagine how he would be feeling, in detail, and how he might be affected by a variety of responses.

And yes, I was disappointed that few people who responded with advice, advised Dave to respond to the boy. But I can't even think of "shaming" anyone for not responding as I did. That requires a degree of, ironically enough, ability to respond quickly to things in detail and with intent to manipulate people's feelings, that I don't possess. Even if I wanted to manipulate anyone into feeling bad about themselves. Which I don't. And again, I feel bad that anyone ended up being hurt by what I've said. But, social skills and all that. I may be able to predict how this boy might feel about certain responses, but I'm not able to predict how strangers, whose situations I know even less than the boy's, will feel about a blog comment I make. That's too foggy and complicated.

And in case it's not clear, the purpose of this comment is to explain in detail what I did and didn't mean by things, so that people won't feel "shamed" by my comment. It's not intended to make anyone feel bad in any way. Explaining that because recently when I tried to explain myself to someone who thought I meant something hurtful someone else, she was hurt by my explanation because she thought I was presuming she didn't know things she already knew. Don't explain and people get hurt by things I didn't mean, explain and people get hurt by things I didn't mean. See why I can't predict responses to my comments?

Amanda said...

Oh and, I'm sorry I didn't even think of people responding in their heads without saying anything. I was responding entirely to what I could see.

Belly (Liz McLennan) said...

Shan, I think I love you. You are absolutely right about lack of judgement and empathy.

Bang on.

Colleen said...

Dear Dave:

I think that your response was perfect.

Shan - no I have not always been as "enlightened" as I am now. It has been through people taking the time and effort to confront - sometimes gently, sometimes not - and to model, that I have grown the little bit that I have. (I still have an enormous way to go!)

I think that the mother is trying to protect and control her son in unhealthy ways. He is going to rebel - I loved that he held the wheels to prevent her, even for a moment, from controlling his movement. She has to let go of her fear for him and support him to find his own way - just like every other mother in the cosmos. Because her child has a disability , she is not exempt from letting her son go. It is harder to let that child with a disability go - often we have had to fight for her/his life - but if we do not let them go then we become a handicap. That boy has wings - you can see it in this brief exchange - he needs to be able to spread them!!!