Thursday, June 27, 2013

Take Two: The Boy, The Photo, The Controversy

A little boy. A photograph. A firestorm of controversy. By now most of us within the disability community are very aware of the story of the class photo of a young boy sitting in his wheelchair, off to one side, the very picture of thoughtless exclusion. When I wrote about my take on the second picture, it seemed that I got a sense of the intensity of opinion about exclusion, inclusion and the variety of ways that people saw the same pictures.

From comments on my blog, and elsewhere, and from emails to me personally, I found my point of view either lauded or soundly criticised. The criticism usually was about my point that the wheelchair was not in the second picture, that they could easily taken a photo which him included while he still was in his chair. I'd like to address 2 of the concerns brought forward to me. I've waited a few days because I want to chat, not shout, about the issues raised by this picture.

The most common thing was, "It was his choice!" And yes, I read that the boy had made this choice. I also read that his family had kept the swirling controversy away from him, they didn't want him pulled into the media frenzy created by the story. On one hand, that's good, on another hand, I'm not so sure it is. I''m guessing all the kids in the class we're so protected from the information. It would be tragic if he was the only one that didn't know why the second picture was being taken. However, back to the point. If he is going to make a decision, shouldn't it have been an informed decision? If information is kept back from someone, purposefully, then any decision they make is, surely, suspect.

Further, "It's his decision to make!" is a fine argument. But ... has everyone forgotten, he's a little boy. Making decisions requires assertion and full understanding of options. Many children, in general, and many, many children with disabilities, are taught compliance, taught to do what they are told, taught not to be a problem to others. For him to have insisted to stay in the chair and that a different kind of picture to be taken would have required an incredible amount of self assurance and assertive skills. I'm guessing that a large percentage of adults would not have the ability to do just that. It's a lot to ask of a little boy. It would also have required him to understand 'inclusion' at a deep level and further, understand his 'right' to make the request. The first picture kind of indicates that maybe he hasn't had a lot of practise at inclusion or a lot of experience of having his needs and rights respected. Just saying.

I am writing this because I have seen so many travesties of care done in the name of 'choice.'

I believe in choice, but I also believe that for choice to be choice, there needs to be several things: self esteem; assertion skills; information involving the choice'; an understanding of options; practise and support.

"The wheelchair isn't important, he is important, he is more than his wheelchair." This is the other theme that came forward. It may surprise you, I agree. With everything said. So why did I write about the second picture having him out of the chair and on the bleacher. Well, because it was the SECOND picture. If this had been the first picture there would have been no controversy, no outrage, no debate. All good. I would have even said, if I'd seen it, that I was pleased that they had looked for a way to include the little boy.

But it was the SECOND picture. A picture that came after the one that was seen round the world. It was the picture that would 'fix' the problem. In the SECOND picture, the wheelchair matters. It certainly matters to me, a wheelchair user. I would think it mattered to many. The SECOND picture showed a boy included, but the inclusion happened when HE adapted to the needs of the photographer by attempting to rid himself of his difference to be more like his peers. Adaption is HIS work. Inclusion requires HIS effort. No one but him did anything different. No one but him was made to change. This was the SECOND picture - there should have been thought about what it meant and what was being said - the first one had been seen by the world, the second one would be too.

So, to be clear, I don't give a bull crap if people with disabilities are photographed anyway they want, in or out of a wheelchair, with or without a cane or a walker. It's none of my business. Pictures are pictures. But in this case it wasn't just a picture was it. It was to be a 'solution' picture ... a picture of 'inclusion.' It meant more. And I believe it failed in every way.

I have been cautious here not to use the boys name and I certainly don't want to be critical of the family in any way. I'm trying to write a general piece about a specific situation because I think there is much to learn from the two pictures and what happened between takes.

They say a picture says a picture says a thousand words. In this case I believe that these pictures spawned millions of words - and any discussion of inclusion and of sensitivity to the needs of others is an excellent thing.


Jayne Wales said...

The fact that this has meant people sat up and noticed and commented is surely a good thing. In the past this would have not raised any eyebrows so it is an example of how the world is changing for the better. I too agree that people use choice as a reason very badly and do no think that through at all. Sometimes it is laziness that makes people say he is for example neglecting himself, it is his choice...bah rubbish!
Oh God when you are young how you just want to fit in and not be different. You would give anything usually not to stand out. Even if you assure kids that's ok it is such a hard thing to do. It takes such a lot of strength and confidence to stand out in anyway from the rest. The solution was not thought through with him truly included but am sure there were all sorts of reasons for it. One day he will look back when he is hopefully in a position to do that and tell us all what he thought about it. He will then be a proud young man able to express himself confidently in an even better world. That's my prayer

CL said...

I imagine the boy might have genuinely wanted to be photographed without his chair, only because he has been taught in countless subtle ways that his chair = exclusion, and the kids without chairs are included. So it might not have just been a lack of assertiveness but a lack of consciousness about what it meant that the adults decided to remove his chair from the photo.

It's hardly the same thing since it's not about inclusion, but I used to beg my parents to let me take my school pictures without my glasses. I had been taught that glasses were ugly and nerdy, so they made me ugly and nerdy, and I wanted to look "pretty" in my elementary school photos. In retrospect, pretty messed up.

Tamara said...

Still totally agree with you. I don't think the parents made the right decision. I think your point about it being the second picture is a good one.

When it comes to it being the boy's decision, I'm skeptical. I know that I have to be very careful when presenting choices to my son - if I really want him to decide for himself. I know I can easily persuade him to my way of thinking. And I often did that without intent, so now I know I need to be more careful in my presentation. And as you said, this child is very young. Was he upset about the first picture or just the mother? I don't remember reading that he came home upset. I only remember her being upset when she saw it.

I remember some parents who led a group of young adults with DS to a state's disability day with the legislators for a local DS organization. One father presented a slide show at the organization's annual meeting. He talked about all the disability advocates who were protesting some severe cuts in state programs as if they were some horrible people. I think he said something about attracting more bees with honey and talked about how respectful and nice they were to all the legislators, how they got to talk with a couple personally. Um ... no, nothing about complaining about the budget for people with disabilities! I think that just might qualify as being taught compliance, do what they are told and not be a problem to others.

And my last "point". She put the picture on Facebook. That opens it up to public opinion. I think I've read a few things that it was the mother's decision and we shouldn't question it. Well, if you don't want your opinion questioned, don't put it on Facebook. Happens to everyone.

Anonymous said...

I agree with you on the nuances: my mind said WTF! when I saw the second picture, after I had seen the first picture just before.

To make it right, I would have expected to see the boy IN HIS WHEELCHAIR but included better in the 'correction,' 'solution,' or even 'apology' picture.

So the second one was wrong IN CONTEXT of the whole controversy. Not in and of itself.

The other point being missed is that not all children who use wheelchairs can so easily leave them to sit on a bench. So it is a bad general solution.

Becca said...

Well, you know my thoughts from Facebook, and I agree with you on all counts 100%. I'm just so surprised that so many people feel so differently about it. Urgh...

Anonymous said...

Jayne has very good points, as do you Dave. I am hoping that someday we will hear how this child felt about the situation. I truly had not thought about how the child might feel about being out of his chair and that to him it might be a good thing in the moment. That thought brings me to the longing we all had to be exactly like everyone else regardless of who we are. Dave, your points about it being the SECOND photo were on point. I do have to agree that it being the second photo makes it feel much different.
What a quandry!

n. said...

i just wish these posts, and any comments by wheelchair users on the posts, were required reading along with the famous photo and its "solution".

Alison Cummins said...

It’s not the little boy’s job to make a point for anyone else no matter where the picture was seen. I don’t know what possibilities were thought of or offered to him, but whatever was proposed to him as a choice should not have been about what would be best for the rest of the world it should have been about what was best for him.

It’s entirely credible that a second-grader would feel that sticking out as little as possible, however that was acheived, was what he wanted. Or that this was a welcome opportunity to sit in physical proximity to a classmate — shoulder-to-shoulder — physical contact divorced from a helping context like anyone else.

I don’t see a need to read anything else in. I don’t feel that coaching him to make a point to millions of people he doesn’t know anything about is necessarily more in his best interests than just accepting that he’s happy with this choice and not arguing with him that a different choice would be even better because more in line with a grown-up’s agenda.

Maybe he wasn’t offered any choices. I have no idea. But it’s not his job to educate me and the photo should not be critiqued on those grounds.

Princeton Posse said...

Excellent discussion! Thanks Dave et al.

Colleen said...

Dear Dave:

This issue has so many people expressing passionate opinions.

I think inclusion starts with the strong belief in the premise that everyone belongs now, together, let's figure out how we make it work.

I think that the little boy is too young to carry this decision on his own. But I do think it should be about him and his classmates.

I wonder if what we are seeing is the struggle to make inclusion work. Struggles can be messy. And people make big mistakes along the way. I do not mean to justify the exclusion, just that I am uncomfortable making judgments without knowing a lot more. All I can say is that I think people are struggling here and I would rather see that than big mistakes and no struggles.

We know that we are a long way from true inclusion. We will get there as long people believe it is worth struggling for.

Just some thoughts

Rachel said...

In general, as I've read all of the discussion about the two pictures, I find myself having a very hard time with comments about what the child "really" wanted, from both sides of the aisle. Yes, it's true that with all of the pressures to fit in and to be compliant, the little guy's decision might have been less than fully informed. On the other hand, when I see comments along the lines of, "He just didn't know what he wanted because he didn't have all the information," I'm uncomfortable, because it feels like it also subtly disempowers the child. It leaves out a third option: That he is simply adapting to the world as he experiences it, at his stage of development, in his environment, and in a way that is absolutely brilliant *for him* and that makes him feel great about his experience.

Children often have a wisdom that goes beyond adult analyses, especially when it comes to how to navigate a situation in which their options seem narrow. I can remember many times like that as a child, knowing that I didn't have all the information the adults had and yet having excellent instincts about how to navigate the situation *as it was*, not as it might be at some future time. The idea that people are unaware of what's really going on in their situations and need people outside the situation to enlighten them flows throughout the culture we live in and it's very problematic. It's not that we shouldn't comment and discuss; I'd be a hypocrite to say that, since I do it just like anyone else. But I'm always aware of a tension between respecting the person's authority in the situation and doing social commentary. Reading between the lines of your piece, it seems that you hold that tension as well.

I completely agree with you about the fact that you can't read the second picture outside of the first one; as a solution to the first one, it's problematic and raises all kinds of questions. But I think that these questions have more to do with our interpretation of the boy's life than with the boy's experience of his life. I think you've done a great job making that distinction. It's so, so important to not let our interpretations stand in for the experience of the person at the center of the issue.

Kristine said...

I appreciate your specifying that this discussion is about a situation, not the specific family. I'm trying to keep my comments in the same tone. And I like N's comment, that commentary by people in wheelchairs should be required reading with the photos! I always think the best parents-of-disabled-kids are those who form relationships with disabled adults. Not that we're all going to agree and be able to give The Official Answers regarding disability, but we can usually provide a more nuanced and experienced point of view than those who observe disability from the outside.

I'm less curious about the boy's opinions now, and more curious about what he'll say when he looks back on this when he's older. I know that when I was his age, I had a lot of thoughts and emotions that I simply couldn't verbalize. I found my voice as I got older, discovered the disability community, and heard/read things that resonated, that gave words to my early experiences, and that let me know I wasn't alone in my perceptions. As a kid, though, I was an expert in picking up on adults' wishes, and giving them what they wanted. (I think most kids are masters of that skill.)

I agree that once this went public, and once there was a SECOND picture, it became bigger than just a class photo. In fact, I'm a little concerned about the repercussions. When it's school photo time this fall, how many photographers, teachers, and parents will have this incident fresh in mind, and be eager to apply their new understanding that inclusion means ditching the wheelchair? How many more times will the (very well-intentioned) message be passed along that the disability and the chair, not other people's thoughtlessness, is the problem?

I'm in favor of choice of course, but I think it's a weird choice to have presented him with in the first place, unless it was originally the kid's idea. Getting out of the chair at home isn't the same as getting out at school. And getting out for an activity isn't the same as getting out for a photo. He didn't get out of his chair to physically relax, or to socialize in a different way; he got out with the intention of appearing "normal." It's so odd to me.

And it's odd, to me, that staging the photo ever became such a big deal. The situation isn't a new one! Class photos and wheelchairs have both been around for a loooooong time! I don't remember there generally being any discussion or issue when I was in elementary school. I filed in with everybody else. I was usually placed at the end of the front row. We were all equally spaced from each other. It never occurred to me that my chair was causing any sort of problem. It wasn't a problem. I cringe to even think about all the hassle of calling in someone to get me out of my chair, and sit by me in the photo so I didn't fall, and having everybody in the class staring, because they'd never seen me out of my chair before, and suddenly being seen as someone who was moved and placed by others, rather than someone who moved on her own... It just seems like so much unnecessary fuss. I have a hard time imagining a kid requesting all the fuss and extra attention, if the adults hadn't first decided this was An Issue.

Anonymous said...

I totally got what you were saying the first time around. My son was photographed sitting with the class as long as they could lift him. Now he is in his chair at one end but still with the class. I think because they had botched inclusion with the first picture they should have shown inclusion in the second, not exclusion of the chair. We have been fortunate that everyone who is involved first hand with my son in the school system has included him 100%. It is the administration that doesn't get it. We got the curb cut the year after he left one school and it has taken them over a year to ramp one class he needs to get into. I really don't get how anyone could think the first picture was fine. I also try to give my son the ability to speak up for himself. Often I print up your blog posts and he wants to bring them in to the principal to educate him on disability. Our mantra is if there is only one door open it should be the one everyone can use. We got that from you. My son is only 10 so he's going to need you around and blogging for a while more.

Adelene said...

"I believe in choice, but I also believe that for choice to be choice, there needs to be several things: self esteem; assertion skills; information involving the choice'; an understanding of options; practise and support."

This sounds very much like you're saying that he-as-he-is is not good enough to make decisions, so other people should make decisions for him. I don't think this is a position you actually want to support, though. If you do - who gets to decide when he's good enough - skilled enough, has enough self-esteem, whatever - to make his own decisions, and how do you propose to stop that person from deciding that he only meets those criteria when he's agreeing with them?

Dave Hingsburger said...

Adelene, you have an excellent point, that's not what I meant but that's what I wrote. I needed to have written that more clearly. I am going to do a blog post in the future about exactly the point you bring up. Thanks.

Unknown said...

Thank you for this. In both of your posts on the issue, you've managed to express my feeling on the issue much better than I have.

I appreciate the choice of a little boy, and I appreciate that part of the job of responsible adults is to teach the children we interact with about autonomy and about spec thing the choices of others.

But I also can't help but be reminded that part of our job as responsible adults is to help ensure that the children we interact with get what they need, and not just what they want.

And I can't help but wonder if what this little boy needs in the long run - along with his classmates, and his teachers, and a photographer or two - is a very visual, lasting, public reminder that he can be fully included and embraced in exactly the way he publicly moves through the world - wheelchair and all.

He will undoubtedly face passive, physical barriers to inclusion throughout his life. What a powerful message it would have been to be able to pull out an old class picture as a reminder that active inclusion can overcome even structural exclusion.