Looking from Both Sides

Looking at Life from Both Sides

Hello, and welcome to Celebrate Creativity. I’m George Bartley. And I promise that starting in the next episode, I'm going to begin to teach you how to use voice control.

But today, I want to talk about accessibility, disability, voice control, and something even larger than all of those: what it means to look at life from more than one side.

There is a phrase that has stayed with me for years from a song by Joni Mitchell: I’ve looked at life from both sides now. I am not quoting the whole song, and I do not need to. That one phrase is enough, because it expresses something I have thought about for a very long time.

I have looked at disability from both sides now.

I have lived as someone who works with people that have motor difficulties. And I have also lived as someone that many people would never assume had a disability unless I told them.

I have looked at communication from both sides now.
As someone who helped others communicate.
And as someone who has known what it means to need a different kind of access to the world.

I have looked at institutions from both sides now.
From the hopeful side, where they want to help.
And from the realistic side, where good intentions often collide with lived reality.

And I think that matters.

Transcript

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Looking at life from both sides. Hello and welcome to Celebrate Creativity. My name is George Bartley, and I promise that starting in the next episode, I'm going to begin to actually teach you how to use voice control. But today I want to talk about accessibility, disability, voice control, and something even larger than all of those. What it means to look at life from more than one side. There is a phrase that has stayed with me for years from a song by Joni Mitchell. I've looked at life from both sides now. I'm not quoting the whole song, and I do not need to. That one phrase is enough because it expresses something that I've thought about for a very long time. I've looked at disability for both sides now. I have lived as someone who works with people that have motor difficulties. And I have also lived as someone that many people would never assume had a disability unless I told them. And that difference between theory and reality is where today's episode begins. I know one of the moments that changed my life happened years ago, and it arrived with the kind of strange dramatic timing that life sometimes gives us, whether we wanted it or not. I was just a teenager, and my family had gone to Washington, D.C. to see Bob Dylan in concert. Now, this was at the fascinating period when Dylan would play folk music in the first half of the concert and rock music in the second half. So even the concert itself had two sides, folk and rock, one voice and then another, one style and then another. Looking back, that detail almost feels symbolic, though at the time it was simply an exciting event. Then the next morning, while walking down the hallway at school, I had my first epileptic seizure. I was rushed to the University of Virginia Hospital in Charlottesville, Virginia, and I was there for two weeks. I was given a diagnosis of etiology unknown, which is a fancy way of saying we don't know the cause. And I was given medication that seemed to have, well, controlled these seizures. And I guess after taking so much medication all these years, the medicine has built up in my body to where that epilepsy is a thing of the past. But I still take my medication faithfully. And I actually think it's a better kind now. But I'll talk to about that way later on in this podcast. Now, this is a serious memory, and I don't want to make light of it. But life has a way of wrapping very serious things in very human and sometimes amusing reactions. Even after that, my dear mother believed that Bob Dylan had caused my seizures. And I must say that has always struck me as one of the most memorable reviews of a performer I have ever heard. Bob Dylan may be a powerful singer, but not quite that powerful. Still, even if Bob Dylan did not cause my seizures, something happened in that period that did change the way I looked at life. I began to understand, perhaps before I had language for it, that the body is not always dependable, that health is not always stable, and that a person can move very quickly from feeling ordinary to feeling completely vulnerable. That is a lesson many people do not really absorb until life teaches it to them directly. When we're young, and sometimes even when we're not so young, we tend to imagine that the default human condition is competence, energy, clarity, and control. We imagine that bodies will obey, that minds will cooperate, that speech will come when we need it, that movement will happen when we want it, and that the systems around us will somehow already be arranged to fit us. But that is not reality. Reality is more fragile, reality is more variable, reality is more human. And over time I came to realize that, well, realize that not through my own seizures, but through the work and communities that shaped much of my life. I was even hired at one point at the Center for Independent Living just outside of Stanton because of my then current disability. And I took a graduate course at Harvard University in Cambridge, Massachusetts, regarding using computers with those who had special needs. And as an American Sign Language interpreter, I became deeply involved in the world of deaf individuals and people with language problems. Communication was no longer some abstract skill that polite society likes to praise in the abstract. It was immediate. It was practical. It was emotional. It was daily life. And that kind of experience changes the way you think. It changes the way you hear people talk about access. It changes the way you hear institutions congratulate themselves. It changes the way you hear companies describe so-called solutions. It changes the way you understand the difference between helping people and actually listening to them. Because disability is not neat. It's not one thing. It's not one category. And it's not one saintly lesson for the able body. And it certainly is not one tidy corporate paragraph tucked into an accessibility page on a website. Disability can be visible. Disability can be invisible. It can be constant. It can come and go. It can be obvious to everyone in the room, or it can be known only to the person living with it, and perhaps a few trusted others. It can affect speech, it can affect hearing, it can affect sight, it can affect memory, it can affect energy, it can affect movement, it can affect dignity. And perhaps most of all, it can affect how much effort it takes to do what other people call simple things. Now that is something the non-disabled world often fails to grasp. People see the result and not the labor. They see that a person got dressed, arrived at work, spoke clearly, answered questions, taught a class, made a joke, or created something worthwhile, and they assume, well, everything must be fine. No, everything may not be fine. It may simply be that the person has become skillful at carrying weight you do not want to see. And because I have lived from both sides of that divide, I care a great deal about how we talk about these things. I know what it is to have a disability that matters deeply, while also knowing that many people looking at you from the outside would have no clue. And that hiddenness creates its own confusion. Because when disability is visible, society often reacts with awkwardness, pity, overhelpfulness, or avoidance. But when disability is invisible, society often reacts with disbelief. If you speak well, people assume you are fine. If you think clearly, people assume you are fine. If you laugh, people assume you are fine. If you function on a good day, people assume there is no bad day. And that too is a misunderstanding. So when I say that I look from at life from both sides now, I mean that quite literally. I have seen how people react to visible disability. I have seen people dismiss invisible disability. I have seen professionals do excellent work. I have seen professionals hide behind language. I have seen kindness. I have seen ignorance. I have seen dignity upheld. And I've seen people spoken about as if they were the were case studies instead of human beings. That is why I feel so strongly about technology and accessibility. Because at its best, technology can be liberating. It can remove barriers, it can reduce fatigue, it can widen independence, it can let thought become action. It can allow a person to do privately, efficiently, and with dignity what might otherwise require assistance, delay, or embarrassment. That is not trivial, that is not decorative, that is not futuristic fluff. That is human significance. And that is why voice control in particular matters so much to me, in addition to, well, practical matters. For some people, voice control might look like a novelty. For some, it might seem like a convenience. For some, it may be the kind of thing they try once, smile at, and then move on and ignore. But to others, it is something deeper. It is a bridge. It is a way for the voice to become the hand, a way for intention to become action, a way for the human being to meet the machine on terms that are more natural, more merciful, and sometimes more possible. When hands hurt, voice matters. When energy is low, voice matters. When fine motor control is difficult, voice matters. When fatigue makes ordinary typing feel like trench warfare, voice matters. When independence depends on whether the machine can hear you and obey you, voice matters. That's why I don't, uh that's why I don't discuss voice control as a toy. I discuss it as a serious instrument of human possibility. And this brings me to a point that I want to make very plainly. Many of the people designing modern technology, even intelligent, well-meaning, highly trained people, do not really know what disabled life feels like from the inside. That doesn't mean they're bad people, and that doesn't mean that they're malicious, and that doesn't mean that they do not care. But it does mean that there's often a gulf between accessibility as described and accessibility as lived. I have read the papers, I have read the statements, and I've read the polished descriptions online, and so often they sound good, they sound respectful, they sound enlightened, they sound progressive, they sound beautifully edited, but they do not sound lived. And there is a difference, a very great difference, because people who have lived disability from the inside know about friction, they know about repetition, they know about fatigue, they know about humiliation, they know about commands that almost work. They know about interfaces that seem brilliant in demonstrations and maddening in real life. They know about needing one small thing to work reliably, not spectacularly, not impressively, just reliably. They know that a feature that succeeds 80% of the time may still fail the person who depends on it. They know that so-called inclusive design is not truly inclusive if it is built without seriously listening to the daily experience of those who need it most. And that is what I sometimes want to say to the great technology companies. Please do not merely admire accessibility, please do not merely advertise accessibility, please do not merely theorize accessibility. Live closer to it, listen more deeply, test more humbly, and understand that disabled users are not a side market of a moral decoration. They are human beings trying to live their lives. Accessibility is not charity, it is not a favor, it is not a sentimental add-on, it's not an annual press release, and it's certainly not a photograph of a smiling user meant to reassure the public that the company cares. Accessibility is reality. It is the point at which technology finally admits that human beings come into a well in many conditions, many bodies, many voices, many strengths, and many limitations. That, to me, is the true subject. Not disability as an itch category, but humanity as it actually exists. And perhaps that is one reason I bristle a little when accessibility language becomes too polished, too abstract, too congratulatory. Because the real thing is messier than that. The real thing includes confusion, the real thing includes trial and error, the real thing includes exhaustion, the real thing includes adaptation, the real thing includes compromise, the real thing includes humor. And yes, sometimes the real thing includes a mother sincerely believing that Bob Dylan caused her son's epileptic seizures. That too is part of reality. Human beings do not live in white papers. Again, we live in stories. And I have learned anything from living and working in the worlds that I've mentioned earlier in this podcast episode, that stories matter because they preserve the texture of life that formal language sometimes strips away. A paper may say user experience. A real story says I was tired, I was frustrated, my hands hurt, I needed the command to work, and when it finally did, I felt a kind of relief that no spreadsheet can measure. A paper may say empowerment. A real story says, for the first time all day I could do something by myself. A paper may say, accessibility feature. A real story says, this gave me back a piece of my dignity. These are not the same. And because I worked in settings where communication itself was at stake with deaf individuals, with people struggling with language, with people in rehabilitation, I have become very sensitive to the difference between a system that appears to include people and one that truly does. To include someone on paper is easy. To include someone in life is hard. It requires listening, it requires patience, it requires humility, and sometimes it requires the willingness to admit that the people closest to the problem understand it better than the people paid to define it. I believe that deeply. And I also believe something else. I do not believe accessibility is only for the disabled. That may sound strange, but hear me out. The truth is that every human being is only temporarily able-bodied, temporarily fully resourced, temporarily untouched by limitation. Age comes, illness comes, fatigue comes, accident comes, pain comes, confusion comes. And for many people, one day, the very accommodations they once considered marginal become central. So when we talk about voice control, captions, screen readers, diction, dictation, larger text, reduced motion, alternate input, simplified commands, we're not talking about fringe luxuries for a tiny group. We're talking about design that acknowledges the actual arc of human life. A design that improves the work towards commands that everyone uses. And if we were wiser, we would stop treating accessible design as specialized kindness and start treating it as realistic design. This is one of the reasons that I want this podcast to keep returning to, or that is one of the reasons or lessons that I want this podcast to keep returning to. And I think you'll see in future weeks that as I teach uh certain aspects of voice control, the philosophy behind it will become more and more relevant, or at least I hope so. And that's another reason why uh I feel that my own perspective may be worth something here. Certainly not because I know everything, not because my experience is universal, not because one life can stand for all disabled lives, certainly not, but because I have stood in more than one place. I have lived with seizure disorder, I have seen what it means to live with vulnerability, I have worked in communities where communication barriers were not theoretical. I have interpreted, I have listened, I have observed, and I I have had a disability people could take seriously. And I have had a disability many people would not have suspected. You could say I have looked at life from both sides now. And that double vision gives me something I want to offer in these episodes. I want to speak as someone who does not romanticize disability but also does not reduce it to tragedy. I want to speak as someone who values technology but does not worship it. I want to speak as someone who can be grateful for what Apple and others have done to make possible in their modifications for disabled individuals, while also saying plainly that too much accessibility talk still floats above the ground instead of walking on it. I want to speak as someone who believes that creativity does not disappear when the body falters. In fact, sometimes creativity becomes even more necessary then. Because creativity is not only painting or music or literature. Creativity is adaptation. Creativity is persistence. Creativity is finding a new route when the old route closes. Creativity is discovering how thought can still move outward and into the world when the usual mechanisms fail. And that is why accessibility belongs on a podcast called Celebrate Creativity. Because accessibility, at its best, is creativity in the service of dignity. It is invention meeting reality. It is design meeting need. It is language meeting silence. It is voice meeting obstacle. It is possibility meeting limitation and refusing to disappear. And that is really beautiful to me. Not beautiful in the sentimental sense, but beautiful in the deeply human sense. And that is also why I feel so much hope. For all my criticisms, and I do have them, I am not cynical. I have seen too much good for that. I have seen what happens when a person is fully understood. I have seen what happens when communication opens up. I have seen what happens when a tool uh uh actually fits the life of the person using it. I have seen dependence shrink. I have seen confidence rise. I have seen the relief that comes when one small daily task becomes possible again. Those things matter. And if this podcast can do anything worthwhile, I hope it can help listeners see accessibility not as a side issue, but as one of the places where human creativity becomes most meaningful. Because a machine that dazzles an engineer is one thing. A machine that serves a person well is another. And if I may put it this way, the real test of technology is not whether it looks impressive in a product launch, the real test is whether it helps a human being live with more agency, more dignity, and more possibility. That is the standard I care about. And I care about it not only because I have read about those things, but because I have lived near them, worked among them, and in my own way, lived them. So, yes, I have looked at life from both sides now, from the side of disability and from the side of apparent normalcy, from the side of helping others communicate, and from the side of needing better forms of communication myself, from the side of institutional promise, and from the side of lived reality. And from where I stand now, I would say that the future of accessibility will not be built merely by smarter code, it will be built by deeper listening. It will not be built merely by better slogans, it will be built by greater humility. It will not be built by merely brilliant people imagining what disabled users might need. It will be built when disabled people and those who have truly lived in that world are heard not as symbolic participants but as sources of knowledge. This is what I believe. And I suspect that many of you listening, whether disabled or not, know something of this already. Because life has a way of teaching us all, sooner or later, that we are more fragile than we thought, more dependent than we imagined, and more in need of one another's understanding than we may wish to admit. In summary, if technology can meet us there honestly, then it deserves our praise. If it only fattens or flattens itself, then it deserves our skepticism and even disdain. And if this podcast can help draw that distinction a little more clearly, then perhaps that will be one small contribution worth making. Now my hands are beginning to hurt, so I think I'm going to take a day or two off, possibly. I know this pain will lessen uh when I've uh learned how to use voice control faster, but that will only come with time. In fact, though, my ultimate goal is to do a podcast, a complete podcast, sitting back in my chair with my hands crossed and not even touching the computer. Well, thank you for listening to this point, and let me say that I've, well, hopefully gotten this out of my system. I'm going to largely devote the rest of this podcast series to how to use voice control and ideally how to build up some speed. Thank you for listening to Celebrate Creativity. My name is George Bartley, and until next time, may the tools you use serve the life you actually live in.