Labels, standardization, and missing the point

The problem with putting a label on something is that it becomes all too tempting to commoditize anything that uses the label, to standardize until everything in that label can be turned into a checklist or piece of software. My first real experience with this was with Knowledge Management. So much promise when I first came across the concept and started practicing it in the late ’90s, it wasn’t long (early ’00s) before KM was mostly synonymous with document/content/information management. An inherently complex endeavor well suited to navigating uncertainty was turned into an attempt to capture knowledge as if it were some static thing, to turn every situation into something that can be solved with a past best practice.

I also saw this in my personal life, as I learned more and more about autism and the lives of autistic people. As the parent of an autistic son, I had a lot to learn. The most important lesson I learned was, “If you’ve met one autistic person, you’ve met one autistic person.” And yet, it seemed as if everyone was trying to make me believe that all autistic children were the same, that the “cause” of their autism was the same, and that if I would only do [insert some craziness here] then they would no longer be autistic, or they would be better able to cope, or whatever. Ooh, look, there’s a label, let’s come up with a way to standardize that and get people to use (aka buy) our method to do something with it. Though there may have been some sincere interest in help parents help their kids, mostly it seemed to be about profiting from the situation without worrying about actually understanding the situation.

More recently I’ve been learning about Agile. When I read the original Agile Manifesto I couldn’t help thinking, “Exactly.” This is how I’ve approached most things throughout my career, even though I’m not a developer and don’t work in an “agile shop”. But then I dig deeper and realize that Agile is apparently no different from that early experience with KM. A great idea corrupted by people interested not in the ideas themselves, but in somehow profiting from those ideas. Methodologies and frameworks and do it this way exactly you can’t mix and match because if you do then it is not [insert framework]. And oh by the way you need to take this certification course and take the test because if you don’t then no one will hire you.

OK OK, probably a bit harsh.

All is not lost when it comes to Agile, at least from this beginner’s mind. (I’ve kind of given up on KM.) Ideas such as Modern AgileAgility Scales, and others give me hope that I’m not the only one that thinks this might be the case. I don’t know nearly enough about all of the hundreds (thousands?) of frameworks out there to say that I can use any of them, but I do understand and apply an agile mindset.

I’m still working through these ideas. Would love to hear your thoughts.

A brief case for inclusionary accessibility in design

I was at a local big-box store the other day picking up some hardware for a home improvement project and had the need to visit the men’s room. It is a large store and so has a relatively spacious men’s room, with the sinks just inside the entry followed by a row of four urinals. As I walked in I was struck by the fact that the four urinals appeared to be exactly the same, except for one detail. If you can see the featured image of this post, I’m sure you know what I’m talking about.

I couldn’t help wondering, “Why didn’t they just install them all that low to the ground?”

Of course, that was a somewhat rhetorical question to myself because I can easily visualize how the design process went.

Based on the size of the store, the building codes require us to have four urinals. Let’s go ahead and put them along this wall here and install them at the standard height. Oh, except for one that needs to be lower because, well, you know, the “rules”. Left or right side? Doesn’t matter, as long as we have a short one.

And as a result only one of the urinals was installed lower to the ground, because that was all that was required.

It would be easy enough to say that “accessibility” was not considered in the design process for this men’s room, or that it wasn’t sufficiently considered. I would argue, however, that this design is very much based on a consideration of accessibility. It’s just that the accessibility considered was exclusionary and not inclusionary.

Here’s what I mean.

Back when modern urinals were first designed to be more than an open depression or slit in the ground that men stood around to, well, you know, the only people who would ever use them would most likely be adult men. There was little or no effort made to make it possible for those with physical handicaps to even get into the building, much less any thought given to how they might use the restroom. So the urinals were designed to be exclusively accessible to adult men who could stand up in front of the urinal. (To be clear, this is just an assumption, my impression based on my understanding of history in general.)

Fast forward to today when we know better and make more effort, at least on paper, to make access to spaces and facilities more inclusively accessible. The exclusionary approach is so ingrained in the culture and in design that making something accessible for the “other” is seen as something separate, something that needs to be done because someone somewhere said it had to be done.

An inclusively accessible design for this men’s room would have, in my mind anyway, had four urinals closer to the ground than the old standard (it should become an old standard, anyway). To take it even further, the design and construction standard (and building codes, to be sure) should be changed to reflect this inclusive design approach.

If one of the urinals is going to be lower to the ground than the “usual”, why not just make them all lower to the ground? In this way you are meeting the needs of all (or at least more) with one simple change.

To be sure, inclusionary accessibility is more difficult in some situations than in others. The urinal example above is relatively straightforward compared, for example, to the challenges software and website developers have. Unlike the physical example of the urinal, which can easily accommodate all users with a single configuration, software developers have to understand and contend with often competing and contrary needs.

A basic example is the user interface of a web site in a web browser. Just take a moment and consider how you use the web browser on your laptop. Now, close your eyes and think about how you would use the web browser on your laptop if you couldn’t see it.

For the person who can see the screen, visual cues are typically sufficient and they would likely not want to hear a description of the screen or the layout read to them as they navigate the page. But for the person who can’t see the screen, the actual visual design of the site is unimportant and, for all intents and purposes, of no value. They need another way with which to navigate and to consume the content.

Which gets us back, once again, to the prevalence of exclusionary accessibility in design.

Blind people aren’t going to use a web browser, how would they see it? So we’ll just design it based on people being able to see what they are doing.

I am encouraged by some recent examples of incorporating accessibility in digital design. WordPress, for example, requires that “all new and updated WordPress code must conform with the WCAG 2.0 guidelines at level AA”. The upcoming St. Louis Service Design and UX Conference has accessibility as a focus; I hope that the speakers will at least touch on this idea of inclusionary design. And I am especially encouraged by the growing (slowly growing, but growing) awareness and use of human-centered design principles.

But none of this matters if “accessibility” continues to be seen as something separate from the main design, an add-on for the “others” that can’t use the “real” version.

We need to become inclusionary not just in our design work, but in how we see the world as a whole.

 

 

Division in the Autism Community – what next for us?

“It’s very hard for members of the three groups to find common ground.  People tend to see autism through the lens of personal experience.  An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non verbal, cognitively disabled, and self injurious. ”

Source – Division in the Autism Community – what next for us?

Don’t ask me, ask him (about the autism C-word)

A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right?

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by what I learned.

If the child study team that gave us the diagnosis had asked me that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”) But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make.

At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 20, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for out autistic kids, even if the path is a bit longer or rockier. It is, after all, their life to live.

Devote more time to your kid’s strengths than their shortcomings

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don’t have natural talent with numbers, you’re still forced to spend time in that area to attain a degree. If you’re not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent – any parent, for that matter – will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not.

But that doesn’t mean that is what we should be doing.

Normal people aren’t normal either

Set in the near future (30 years or so), Elizabeth Moon‘s novel The Speed of Dark is the story of Lou Arrendale, an autistic man presented with the possibility of being cured, his contemplation of what his decision – either way – would mean, and the consequences of his eventual decision. As you might imagine, Lou gave quite a bit of consideration to what it means to be normal. (Even in the future, it seems, there is a desire to make people “normal”.)

I do not think everyone else is alike in every way. She [Dr. Fornum] has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic, and I know that they know and do different things. The cars in the parking lot are different colors and sizes. Thirty-seven percent of them, this morning, are blue. Nine percent are oversize: trucks or vans. There are eighteen motorcycles in three racks, which would be six apiece, except that ten of them are in the back rack, near Maintenance. Different channels carry different programs; that would not happen if everyone were alike.

And some of his thoughts based on a specific situation:

Sometimes I wonder how normal normal people are, and I wonder the most in the grocery store. In our Daily Life Skills classes, we were taught to make a list and go directly from one aisle to another, checking off items on the list. Our teacher advised us to research prices ahead of time, in the newspaper, rather than compare prices while standing in the aisle. I thought- he told us – that he was teaching us how normal people shop.

But the man who is blocking the aisle in front of me has not had that lecture. He seems normal, but he is looking at every single jar of spaghetti sauce, comparing prices, reading labels. Beyond him, a short gray-haired woman with thick glasses is trying to peer past him at the same shelves; I think she wants one of the sauces on my side, but he is in the way and she is not willing to bother him. Neither am I.

As parents we often spend a lot of time trying to help our kids to fit in, to be normal (even as we ask them, “If everyone was jumping off a bridge, would you jump too?”). Of course, this is often because our kids want to fit in. And there is nothing wrong with that.

But if you find yourself trying to get your kid – autistic or not – to fit in, to be more normal even if they don’t want to be, take a moment to ask yourself why you are doing it. And think about what it is that you are trying to get them to do. Is it something that you think Everybody is doing, when in fact Nobody really is?

Perseveration, or perseverance? Obsession, or passion?

The distinction between “perseverate” and “persevere” is one that I have often wondered about. What I’ve come up with, in a nutshell, is this:

  • perseverate is bad, keeping at something for no real purpose
  • persevere is good, keeping at something in pursuit of a meaningful goal.

Another way to look at it is that someone who perseverates is acting on an obsession, while someone who perseveres is pursuing a passion. In his article Passion Versus ObsessionJohn Hagel provides some insight into this distinction as he reconsiders his earlier question, “When does passion become obsession?“:

To say passion becomes obsession is to make a distinction of degree. It implies that obsession is a more passionate form of passion—too much of a good thing. However, I’m now convinced that passion and obsession do not vary in degree, but in kind. In fact, in many ways they are opposite. [original emphasis]

A real challenge for all parents, but especially parents of autistic kids, is to understand the difference between an obsession and a passion of our kids. Consider the following, a passage that I wrote comparing two different authors’ views on the effect and value of video games:

To Prensky, video games are a passion that can lead to positive learning and skills…. For the Bruners, video games are an obsession that lead to destroyed lives.

If you read the entire article, you will see that the amazing thing is that both Prensky and the Bruners had basically the same understanding of how games work and draw players in but come to wildly different – opposing – conclusions about what it means. For one, games provided an outlet for passion; for the other, games are a destructive obsession.

So how exactly do you figure out if your kid’s behavior is an obsession – so you can help understand and overcome it – or a passion that you can nurture and encourage?  For many parents, especially of “normal” kids, this can seem pretty straightforward: if your kid is interested in something weird, it is an obsession; if it is something more common, then it is a passion.

But just a few seconds thought, serious thought, and you realize that this is not a very good way to make this distinction. Or, as teenage autistic Luke Jackson asks (in a quote that I’ve used before) with more than a hint of sarcasm:

When is an obsession not an obsession?

When it is about football.

For parents of autistic kids, this question is more than academic. Perseveration, or what we believe is perseveration, is a hallmark of autistic behavior. But what if what we are seeing is really just good old-fashioned perseverance?