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.

 

 

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On the internet, no one knows you’re autistic

When people with autism or other disabilities try to engage in face-to-face communications, it is often made difficult because of a bias, intentional or not, on the part of the other person in the conversation.  Another aspect of the value of social media to autistic people and others with various disabilities is the fact that they are judged not by their appearance nor the quality of their voice, but by what they have to say.

Consider the following excerpt from an autism advocacy blog:

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.

Was that written by a man? Or a woman? Young or old? Black or white?  Disabled , or not?

As someone who spends a lot of time on the phone, e-mail, and IM, it is safe to say that I’ve never met, and will likely never meet, as many as half the people I interact with in the course of a day, week, month. Occasionally, however, I do meet face to face someone I’ve known virtually for a long time. Without fail, my thoughts of what they will be like are completely wrong. (Imagine your favorite radio DJ, then look up their picture online: you’ll see what I mean.)

Unfortunately, the norm in our society is to allow a person’s physical appearance and behavior affect our impressions of that person. In the case of autism, especially what is commonly referred to as ‘low-functioning’, this is especially problematic.

The beauty of social media, and the internet in general, is that your physical appearance doesn’t matter. Your method of communication doesn’t matter (granted, this is mainly because everyone communicates in much the same way online). People accept you – or not – for what you say, for who you are.  Not what they think you should be capable of because of how you look or sound. We can only hope the offline world catches up.

BTW, the excerpt above comes from the Ballastexistenz blog. For an example of someone caught in the act of judging by appearances, check out Kev Leitch’s post If Someone’s Not Broke, Don’t Fix Them.

Most of this post originally appeared  on 27 June 2006 on my blog 29 Marbles.

What would you have done? What would you do today?

What would you have done if a prenatal test for autism had existed when you were expecting, and your child had tested positive for autism?  More importantly, what would you do today, knowing what you now know about autism and being an autism parent, if you were expecting and learned that your child would be autistic?  A comment to my last post from Jen and an article from Susan Senator last year give some insight into the question from an autism mom’s perspective.

From Jen:

I can’t imagine my world without my children in it, but if prenatal testing had been available for autism at that point I probably would have aborted them, as the thought of autistic triplets would not have been one that I could have wrapped my mind around. (needless to say, I was also completely clueless about autism- I think that my two exposures were Rain Man, and an educational aide friend whose wounds I had to fix every night after her “child” with autism bit her all day). I am so glad that I had my children, and as far as I can tell, they are all very happy to be alive. They contribute to the world in so many ways, and we would all be poorer without them.

From Susan:

I found myself worrying about how many otherwise “lucky” children would now never see the light of day. And what might I — an abortion-rights supporter for so long — have done had there been such a screening for autism, before I knew Nat? Now I shudder to think of it. But given that so much of what you hear in the media involves stories of struggle or horrors like the stabbing at Lincoln-Sudbury Regional High School, rather than any of the positive potential of autistic people, autism mainly be forever tied to tragedy. I fear what many people might do with information from an autism screening, if it existed.

The theme that comes through from both Jen and Susan is that any decision in this situation is based on information and the mother (and father-) -to-be’s understanding of what life with autism really means.  Unfortunately, as I’m finding in Prenatal Testing and Disability Rights, the people most often in the position to provide the needed information and education (Ob/Gyn’s and genetic counselors) are quite often the least inclined, and least qualified, to actually provide that information.

Prenatal testing and disability rights

An underlying theme of The Speed of Dark is disability rights in general, but more specifically autism rights in a world where the genetic cause of autism has been determined and a prenatal “cure” is given to any fetus that is found to be autistic.   Of course, here in the real world we aren’t at that point – yet.   But we’re getting there.

Since reading The Speed of Dark, I’ve picked up Prenatal Testing and Disability Rights to try to get a more detailed understanding of the various opinions and considerations around the question.  I’ve given this some thought before – I posted the following as To hear or not to hear, is that the question? in September 2006 – but it’s a big question deserving a bit more thought.

= = == === =====

In the world of autism the question, “If there were a cure available for you or your child, would you use it?” is pretty much rhetorical, food for thought. As such, discussions are more theoretical than practical. In the world of the deaf and hard of hearing, however, cochlear implants mean answering this question has much more practical implications.

At first thought for most ‘hearing’ people (here we go with labels and descriptors again), a technology that would allow or restore hearing seems to be a no-brainer. I think that most hearing parents of deaf children would jump at the chance to make their kids “not deaf.” (For now, I’m going to ignore the fact that the results of cochlear implants vary person to person.) As those kids get older, though, the question becomes a bit more complicated, as the kids (and then adults) establish their identities in the context of the deaf culture. (For a similar discussion of the impact of age on the decision to apply/impose a cure, see my earlier post Thoughts on curing autism.

There are many similarities in the arguments on both sides, and I think that the debate in the deaf community may offer some insights into the same question for autism. For example, the following description of different perspectives could very easily be applied to the question of curing autism:

The (deaf community’s) perception is that there’s nothing wrong. There’s nothing that needs to be fixed. Our perception is, there is something that needs to be fixed. So from the very foundation, we’re diverging in our perspectives.

A Google search on Cochlear Implant controversy brings back quite a few listings, here are some examples of comments in the debate:

  • The controversy over cochlear implants in children has many sides. For some in the deaf community, CIs are an affront to their culture, which as they view it, is a minority threatened by the hearing majority.
  • The technology seems like a medical miracle to many hearing parents and doctors who see the technology as a cure for deafness. But the cochlear implant has long been the center of a stormy debate. Some deaf advocates worry that the view of deafness as an illness to be cured marginalizes the deaf and stigmatizes those who can’t –or don’t wish to–use an implant.
  • Most doctors schedule the procedure as soon as possible in young children to increase their odds of acquiring oral language skills. But some deaf advocates worry that hearing parents may wind up making a choice their deaf children would not have made for themselves.
  • That view of hearing loss as pathological is at the heart of the cochlear controversy. On the extreme end, some deaf advocates who communicate only via sign language and shun any attempt to learn oral language, view the device as a threat to their unique, sign-language-based culture. But even to those with far more moderate views, the cochlear implant is a symbol of the hearing world’s desire to “fix” deaf people.
  • The conflict concerning cochlear implants is centered around the definition of disability. If deafness is defined as a disability, in the eyes of many, it is something to be altered and repaired. According to the medical view, deafness is a disability. On the other hand, if deafness is a cultural identity, it should be allowed to thrive and, given the emphasis on diversity in today’s society, should be readily accepted and supported. This opinion is based on the cultural view of deafness. Therefore, although the controversy over cochlear implantation seems simple, it is based on the very complicated and often unstated implications of the true meaning of deafness.
  • Altering a deaf child with surgery at an early age would only cost money once. In contrast, providing interpreting, note taking, and assistive technology would not only continually cost society money; these practices would also create inconveniences for others because of the language barrier.
  • Those who oppose the use of cochlear implants do so for several reasons. These people challenge the supporters of cochlear implants by asking questions such as, “What is normal?” and “Do the quality and quantity of the benefits outweigh the risks involved?”.
  • Parents, confronting a new diagnosis of deafness, react with a wide spectrum of emotions including denial, guilt, the need to blame someone, and the need to find a miracle. Doctors and parents tend to see the child as missing something and view the deafness as a disability that must be fixed to make the child “normal” or whole again. This attitude can have serious social and emotional implications. A child who is told she is “broken” and needs to be fixed will forever see herself as less of a person because of her deafness.
  • The problem is that 90% of deaf children are born to hearing parents. In many cases, these hearing parents may have never met a deaf adult. It is common for parents to be introduced to a number of audiologists and speech therapists when their child is first diagnosed with a hearing loss but to never be taken to meet a deaf adult so that they may receive the other perspective. They are told that something is wrong with their child. It may never be mentioned that deafness is considered to be a cultural identity for some people and that implants are seen as unnecessary. The parents of the deaf child, wanting only what is best for their child, will want to make sure that the child has the opportunity to succeed. If all they have been told is that the child will need to speak to function and that there is a procedure that can provide this, of course they would want the implant. To the parents, it is seen as the instrument of success.
  • Et cetera.

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Different? No doubt. But disabled?

In a recent post suggesting the formation of an Alliance for Autism, Mike Stanton raised a few issues on which parents and adults with autism as a group may need to come to some sort of agreement.  One of those issues are the questions:  Is autism a disability or a difference? Can it be both?

More than just an academic debate, the answers to these questions have very definite real world consequences.  Disabilities are covered by various laws, policies, etc. etc..  Differences, on the other hand, are not.  This was brought home to me when I read the aspie:talk post an adult trying to get accomodations. Although his her issues were more related to not having an official diagnosis, the situation presents a good point of comparison.

If treated as a disability, supported by the proper diagnosis, then the company needs to provide appropriate accommodations to allow the employee to work.  If, however, autism is seen as a difference, then the company is under no obligation to provide this employee any unique accommodation.

In a comment to the post, Al had this to say:

i would lay out what accommodations you need in the workplace without referring to the medical issue… which is unsolvable at this point. just state what you need item by item as matters of personal preference, in terms of “developing a comfortable working environment” and “ways they can help you be happier and more productive.” many of the social problems you have are probably going to exist at any workplace, i would guess, i’m not sure to what extent a diagnosis would alleviate the “micro-social” situation.

Obviously, this is an area where parents and adults with autism may have some differing opinions.

Difference, or disability?  What do you think?  Me, I’m still trying to figure out what I think.

Just the way it is (but don’t you believe them)

Frequent readers of this blog know that in my attempt to understand autism better, I have a tendency to see connections in things that aren’t always directly related to autism.  A lot of times this will come in the form of a song, a TV show, or a main- or sub-theme in a movie (like the X-Men trilogy).

My post yesterday brought to mind Bruce Hornsby‘s (excellent) song, The Way It Is (from the album of the same name).

They say, “Hey little boy you can’t go
Where the others go
‘Cause you don’t look like they do”
Said, “Hey old man
How can you stand to think that way
Did you really think about it
Before you made the rules”
He said, son

That’s just the way it is
Some things will never change
That’s just the way it is
Ah, but don’t you believe them

“Don’t you believe them.”  Don’t listen when someone tells you that you can’t change things, that this is how it was meant to be.  Nothing is “meant to be”, that is the wonder of being human, that we determine what is for ourselves.

Well they passed a law in ’64
To give those who ain’t got a little more
But it only goes so far
Because the law don’t change in another’s mind
When all it sees AT the hiring time
Is the line on the color bar

That’s just the way it is
Some things will never change
That’s just the way it is
That’s just the way it is, it is, it is, it is

Note that in the chorus after the last verse, Hornsby never says “don’t you believe them”.  I don’t know if this was intentional or not, but it is definitely true.  You can make a law, you can tell people what they have to do, but you can’t tell them how to think about others.  That takes education, persistence, and persuasion.

And that, I believe, is the challenge we all face in gaining more understanding and acceptance for autistics, indeed for all people who are different.