Category Archives: Thoughts

The Value of a Disability Identity

I’ve been reflecting a lot recently on what it means to identify as disabled.

Disability is a social construct in many ways, and the social model of disability argues that structural problems (and social expectations) are a root cause of disability. I would argue also that disability is an individual identity. A disability identity something that has helped me make sense of multiple complicated and difficult situations (but I believe it is relevant even in a simpler situation, disability is not by any means a synonym for difficult). It can provide guidance for things such as self-advocacy, education planning, and the use of assistive technologies.

For example, a disability identity might give someone a way to think about the school or work environment in terms of how it can better meet their needs. Accessible technology is part of the solution, but so are modified exam formats that provide an equal footing in measuring knowledge; or the ability to rest when needed (and to have access to quiet, restful spaces). These and other similar choices can have a big impact on inclusion. Yet we still cannot count on administrators remembering this, and people with disabilities and their allies face many small battles all the time to ensure equity along these fronts. When someone says (as I have heard recently) ‘people should go home to sleep’ or ‘we’ll just test this child using the same method as other children so we can see where they stand’ they are advocating for equality rather than equity, for measuring impairment rather than disability.

A disability identity can also suggest the need for political action. This can include volunteer work, protest, advocacy, and more. It gives people permission to go beyond the status quo, to not accept a situation that excludes them or takes away their control or impacts their safety. Instead, they are empowered to ask why this is happening, and how it can change.

A disability identity can also be a guide in personal action. For example, when I was going up for tenure, I sat down with as many potential letter writers as I could to talk about a very important concept in disability: Disclosure. About half of the people I talked to were surprised we were having a conversation about this because they knew and understood that it was neither legal (in many circumstances) nor appropriate (ever) to disclose my disability in any letter they wrote for me without my permission. About half were surprised that I brought the topic up, or even offended, because they had believed they would be helping me by writing about all that I had overcome on my way to tenure. To be clear, I asked all of them not to disclose, and that should always be the default, unless you have explicit permission to say something.

Relatedly, a disability identity highlights where and how we can improve smaller individual interactions by emphasizing the importance of respect and agency. As such, it suggests

  • The difference between being curious (an important way to understand the world) and questioning whether something is needed/laughing (even good-naturedly) about it (which can be invalidating)    
  • The value of checking in (asking how someone is doing, or if something is ok) rather than assuming (saying that “you seem fine today, that’s great”, for example) or avoiding (talking about someone rather than to them for example)    –
  • The importance of giving space. Sometimes it is better to let someone decide when to talk about things rather than pushing for information or constantly asking.   
  • The importance of trust. It is so important never to accuse someone of using their situation to get something they want. It is also important not to assume someone can’t do something just because they look a certain way or have a certain impairment.
  • The importance of acceptance . Letting someone navigate in their own way and not bombarding them with expectations and questions

A disability identity might also change how we approach a research project. In my class on accessibility this quarter, we have frequently asked the question: How would a disability identity change this project. The answer often lies in the questions we ask of a work. For example, we asked — How does this project increase the agency and control of the person it serves? Who does it include and exclude and in what ways? Were people with disabilities used in the project, or were they partners, or even leaders? Should they be authors of this paper? What happened to them after the project ended?

I want to highlight some differences between these questions and the ones immediately obvious from a social model perspective. That suggests questions such as: How does this work tear down structural barriers that they might be facing? Does this work question the status quo or hold it up? What is the context in which this work was done, and what happened after the project ended? These are also important questions, but they cover different ground.

What has fascinated me when talking about these issues with others is the level to which they can be confusing, confounding, confidence-chilling concepts for people without a disability. If you are uncertain what you can say to someone, or feel attacked when people ask for change, keep in mind that you might be missing important perspective, or that the work of educating others about disability might involve a broad brush that catches you up in it even if you are doing the right thing.

Finally, I’ll note that disability identity can also be empowering. If you have a disability, and have not thought of yourself in those terms, or considered those possibilities, it can be interesting to introspect about them. Ask yourself what a disability identity might give you. It does not need to define you, but it might still be part of you.

Contributing to SIGCHI Accessibility

The AccessSIGCHI community (a group of volunteers that are working together with SIGACCESS to identify and address accessibility concerns across SIGCHI) has put out it’s 2019 report. I’m not going to copy the whole thing over here, especially since it’s already up on Medium but I do want to call out some important things about it.

First, although the report is about AccessSIGCHI’s work, it’s also in a way about accessibility across SIGCHI, since that is the goal we are working toward. And as such, it is incredibly gratifying to see the number of people all across CHI also working to make SIGCHI accessible. There are too many to name here (but we tried to name at least those who took on official accessibility chair roles in the report).

Second, we are making progress– more and more conferences are appointing accessibility chairs, for example. And ACM is moving toward a more accessible publications format (HTML) and thinking about accessibility in the process.

At the same time, accessibility is challenging us all to rise to new levels. Lack of accessibility is analogous to an inequitable tax that some face and others do not. It can cause issues with physical safety, trigger health effects that are non-trivial to cope with, or simply bar someone from participating in their own research community, and all of these have happened to people I know in the last year.

Change often seems incremental, and can be conditioned on not only the knowledge and caring of an accessibility chair, but choices made as far back as selection of and negotiation with a venue and as far out of the control of leadership as a rude push, by a person in power, in line for food.

For these reasons, it is critical that we not only set up goals and guidelines, not only hire expertise, but also work every day to raise awareness, to give a voice to those in our community with disabilities, and to empower them.

Accessibility is a hot topic in CHI research right now. It was one of the top keywords among submissions to CHI 2018 for example. If you are doing accessibility research, which benefits your career, but not accessibility service work, which benefits the careers of people with disabilities, ask yourself if you should change this. If you already volunteer, thank you!We need more volunteers, and we also need more representation and inclusion of people with disabilities in SIGCHI!

While we should not expect people with disabilities to do the service work necessary to improve accessibility, we should empower them to do so. This means giving people with disabilities a chance to be represented among the leadership where they can help to make decisions, address structural inequities, and have power to go with their strong voices. We must cultivate leadership and provide opportunities for people with disabilities. And we should focus those opportunities where they will have the most impact.

Last, while volunteer efforts go a long way, accessibility work sometimes costs money. It makes a big difference when it is possible to hire an expert to review a website, assess legal requirements for site accessibility, or hire a firm to provide captioning services. Budgeting for accessibility from the get-go, or having voices in the room where budgeting decisions are being made, will help to shift the balance from accessibility constantly being a burden to it being a standard.

Accessibility is a wicked problem, as I’ve said before. Even with the best of intentions and a lot of hard work, it is easy to miss something or get it wrong. But if we continue to dialogue about it and work together, I do believe we can make SIGCHI even more accessible. Mistakes will happen, but with dialogue we can learn from them. By working together, we can record them so others can learn too. And in the process we will show all of SIGCHI that they are welcome and respected in our community.

Fostering Science Education and Positive Technology Use at Home

I have been asked in a couple of different forums about how I have gone about parenting my children with respect ot technology. What came out of that thinking lacks any formal reference to literature, but it does represent my experience. I’ve always felt that despite many potential negatives (and despite being mostly a homesteading luddite sort at home), technology has an important positive role to play as well in my children’s development.

Technology today is a human creation; underlying that creation is a set of crafting skills. The ability to imagine an artificial action in the world, create an image or a movie, print a mechanical object, or send a message all depend on these skills. Yet many of our children never progress beyond simply consuming the artifacts and messages that others create. This article explores, through a series of anecdotes, my personal parenting experiences with technology and tries to shed light on some of the challenges and opportunities my family faced.

My daughter is 2 or 3 or 4. She sees phones around her, and is fascinated by them. Relatives give toy phones that light up and ring to my dismay. Parents are begged for phones. Swiping an iphone or ipad is so intuitive she can do it with ease. We work hard to put computers and phones away in front of the kids, and to do housework, play, singing, and other acts of togetherness when parenting them…. A few months (or a year) pass. I am sick with chronic Lyme disease for many months and years, and find myself learning to parent slowly rather than trying to do everything. We build a cloche, two screws at a time, cuddle, and nap together. One day I am too exhausted to get off the couch. In a fit of desperation I give in to repeated requests… to teach the children to knit, something I know is usually not introduced until first grade at their school. Am I a bad parent? One session and suddenly they’re off and running with this skill they have seen in almost every moment of quiet sitting.

We work hard as parents not to use technology in front of the children, and generally include them in our life rather than structure ours around theirs. All the same, as a parent, the questions I find myself asking about technology readiness and craft readiness are not that different whether it is digital technology, music, knitting, or anything else that the children so desperately want to participate in sometimes before they are of the traditional ‘age readiness’. I wonder why and whether one thing is worse than another. We settle on the rubric that physicality and creativity are important, but balance is equally important. Are they getting social time, exercise, play? Are they learning to handle frustration and self entertain? What is any activity substituting for that would be prefered? We try to minimize the ones we don’t like the answers for.

We are on a train. The train ride is 9 hours long, my children are 4 and 6 if I remember correctly. We have brought a movie, books, felt, yarn, conductive thread, LEDs, batteries, buttons, a multimodal cornucopia of ways to engage. We read, make yarn sculptures, walk the train. Sometime during the train ride I have the goal of learning how to make felt bracelets that can light up. The kids are fascinated. We lay the bracelet flat, but have to think about its top and its bottom and the circle that it creates when the snap is closed. Where does the thread need to go to create this effect? Can we make anything other than bracelets? What about a bookmark, that can tell you which page you were on? You could have two snaps, and fold it over to connect to one or the other depending on which page! The excitement is palpable, and the craft is more than do-able by both children. We make mistakes, plan badly, correct, eventually succeed. I wonder if I am breaking some rule by trying out a 6th grade exercise involving electricity on my 4 and 6 year olds, but I see nothing but pleasure and creativity in their response.

As a computer scientist, what has always fascinated me about technology is the power of arcane acts to create whatever I can imagine, and the importance of imagining good, useful things to create. Around this time I was also beginning to think about how to bring technology into my childrens’ middle-school curriculum, and this project was a first attempt. I am delighted by the invention of the bookmark and by the immediacy of the experience as well as the way it builds on the crafting skills my children already have.

We are leaving on sabbatical for a year. The children are 5 and 7. EBooks are big, it is 2011. Taking a library along would be impossible, but there is a plethora of free and excellent children’s literature (60 years old or older) available on amazon for the Kindle. We buy one and take it on sabbatical along with a drop spindle and a big pile of wool. We also buy the Rosetta Stone software. By the end of the year of travel, we have read innumerable books aloud. The children are used to kindles and have discovered at least one game which we ask them to stop playing. We have invented as many stories as we’ve read, and spun enough wool to knit a pair of socks by the end of Fall, which are completed just in time for Winter.

The kindle feels like a technology win. I like the fact that it is easy on the eyes, and that it lets us dig into so much great literature. Rosetta stone is like a game, but it also feels like a win. It is amazing how easily the kids can pick it up, and it helps lay the groundwork for them to learn two languages during the year we travel. I love the fact that it is so synergistic with other things we are doing (practicing as a family, working with a tutor, immersion in school). It turns out that the human tutor we see most often in the Rosetta stone software actually lives in Zurich, where we are as well. The connections between what we do in our technology, and what we do in our lives are rich and deep and our choices feel positive and right.

The children are older, maybe 3rd and 5th or 4th and 6th grade now. They have learned a little about Scratch programming, another technology that almost any crafty parent could pick up though of course I bring an ease and expertise to this because of my background. We try Raspberry Pis as well, a tiny computer that costs around $30, which they can experiment with and even destroy. We assemble 3D printer kits together because of my research.

I also want to set good examples of creative media use. I try to help with the computational things. All are unsatisfying. Scratch is so artificial. The Pis are slow, and hard to understand for the kids. Joint work is much harder in this realm. Meanwhile, technology’s negative side starts to rear its head. Among my own children and other children we know in the same age group, shockingly considering the age, some are caught reading pornographic fan fiction on a kindle, looking at pornographic videos, having their identity ‘stolen’ to text a hurtful message in their name, watching a spoof of a popular song dance video that turns out to be extremely raunchy.

I start to wonder what I have brought into my children’s lives and how I will proceed.  We have many conversations about pornography, about privacy, about how every online act is essentially public.  This feels similar to sexual education. Talking more, and earlier, but of course in age appropriate ways, is the foundation on which positive parenting can happen. Parenting this requires vigilance, openness, learning, and attention. This wondering is not confined to technology, however.  A child’s awakening to the larger world is a fragile process and I conclude that I need to be as involved and aware as possible, but I have no answers.

These early years set the tone for our work as parents in a technological world. Hard limits in the domain of ‘media consumption,’ with the understanding the forbidden is sometimes more attractive than that which is experienced, discussed, and controlled. Concrete examples of positive uses of media such as learning language, reading emails together from far-away relatives and reinforcing what they are learning in school about searching for information online and evaluating what is trustworthy. Strong support for creative uses of technology, in collaboration with local organizations that support these activities in camps and after school sessions help foster this as well. We ultimately choose to allow unlimited use of the most challenging and creative of applications of technical skills, to support passion, and to teach balance with physical and social activity, as well as other hobbies.

To foster this in a positive fashion, we create a rich home environment that included homesteading activities, craft activities, music, cooking, and we gave them both the opportunity and responsibility to participate in that. We teach them to love the act of creation in many domains. We moved into a neighborhood where both children have friends nearby. All of these things helped to fill their time and create a healthy competition with technology. We’ve reached an equilibrium where the computer is just one of many hobbies, to be used for those things it is good at. Mixed in with all of this, we allow ourselves to enjoy and be amazed by their successes, whether online or offline. And the journey continues…