Note: This post is in response to a recent Twitter post by Katie Novak. For context, make sure to read Katie’s original tweet and her blog post as well as the many excellent responses that have followed.
For many people, the title of this post would not make sense. They would have a difficult time understanding how I could be proud of something (my disability) that is often seen through such a negative lens in our society. When we think of disability, we often focus on the challenges it presents to people. Rarely do we consider its positive aspects. Yes, there are challenges, and in no way am I implying that we don’t live in an ableist society where disabled people still face a range of obstacles in their efforts to secure civil rights and the opportunity to live a good life. But at the same time, disability as a natural part of the human experience changes our lives in a number of positive ways. For me, the most positive aspect of having a disability is the community, the many wonderful people I’ve met who continue the fight and speak up for themselves with dignity and grace in ways big and small. I am grateful for those who have come before me and made civil rights for disabled people possible. Without them, I would not be here today.
In school we are taught about the civil rights movement as if it were ancient history – something that took place in the now distant past, a time when people of color and women fought for their rights and secured important victories that have shaped our society to this day. Rarely do we think about the civil rights movement for disabled people, or what some have called the “civil rights struggle of the 21st century.” This is not ancient history – it’s going on today as we speak, and in many different ways: from our efforts to get access to an education, to those aimed at securing good jobs, accessible transportation options and the ability to participate in the digital world on an equal basis.
It would seem like discussing language in that context would be focusing on the wrong thing. Why focus on language (disabled vs. person with a disability) when there are bigger problems that deserve our attention? Well, language is the way in which we define who is in and who is out. It explains why of all places, I would feel the most excluded at an event meant to celebrate inclusive education. When a speaker says something like “I don’t see disability” (yes, this has actually happened/happens) it sends people like me a powerful message – I don’t see you, you are invisible to me. Implying that I don’t have a disability is essentially saying that the last 20 years of my life did not take place. My disability is not just what I can do, it is who I am in the world. I see the failure to fully recognize people’s identities as a blind spot within the Universal Design for Learning (UDL) movement (if you’ll pardon the pun coming from a person with a visual impairment). That is why the conversation Katie’s tweet and blog post started is so important.
Having grown out of the universal design movement in architecture, UDL approaches disability from a social model perspective. Sure, this is a better than the medical model that dominated the conversation on disability for most of our history. That model is the one championed by the medical profession and by charities. Disabled people were/are seen as broken beings who need to be made whole through surgery, medication and other interventions. In order to raise the funds needed to research “cures” for disabilities such as autism, charities grounded in the medical model rely on skewed portrayals of disabled people. You are either a helpless victim who needs saving or a “superman/superwoman” who can climb Mount Everest, run an ultra marathon or perform some other exceptional achievement. There is not much of an in-between. Mostly ignored are the majority of people with a given condition who just want to be able to do the same things as everyone else: get up in the morning, have a good cup of coffee, go to a job they love and pays them a fair wage, get home to take care of their kids, and sit down to watch a good movie.
The social model of disability, in contrast, does not focus on “fixing” the person, but rather on addressing the barriers that exist in the environment and keep people from accomplishing their goals, whether it is boarding a bus or learning how to code. Thanks to the social model, we have accessible entrances to buildings that benefit not just disabled people, but those making deliveries, parents pushing strollers and more. Angela Blackwell calls that the “curb cut effect.” When we design for the needs of one, we actually find solutions for the many. Or as Microsoft puts it in their Inclusive Design Toolkit, when we “solve for one, we extend too many.” I am incredibly grateful for the many innovations the social model of disability has brought about that have made my life easier: from the technology I now use to access the Web and compose this blog post to the UDL principles that have improved educational opportunity for me and many other learners.
The success of the social model of disability is actually why disabled folks like me are now in a position to critique it and point out where it falls short. One way in which it does is by failing to fully account for people’s lived experiences. Even if you were to create an accessibility utopia where few barriers existed, that would not erase the last twenty or so years of the life that I have lived as a disabled person. And neither would I want that to happen, as my life would not be as rich and as meaningful without the experiences I have had (both good and bad) from the time I was first diagnosed with my visual impairment to where I am today. And yet that is what often happens within the small community of UDL. I notice that there is a discomfort around the use of the word “disability’ (I joke that it is the four letter word of UDL). I think in part that tension arises from the need to “sell” UDL to the broader education community, in the process forgetting that the movement originated out of a need to do what was right and just (including learners in the margins) not what was popular.
I think we can find a balance where we make UDL welcoming to both the general public and the disability community. The change has to start with the language we use, and I have a few suggestions:
- Be comfortable with including the terms “disability” and “disabled” in our conversations. Doing so is incredibility validating to those of us who have a lived experience with disability. Whenever you avoid something, you are actually saying something about it, if that makes sense. You are saying “this is so bad” I don’t want to even talk about it. Silence is not neutral – it always “says” something.We can talk about learner variability and disability. The two are not exclusive.
- As a movement that is built on the importance of providing choice and flexibility, we should be comfortable using both person-first and identity-first language as appropriate. Person-first language (e.g. person with a disability, person with autism) is well intentioned in that it seeks to emphasize the worth of disabled people by putting the person in front of the disability (thus the term person-first language). But we don’t need other people to give us self-worth. We can gain our own self-worth if given the opportunity to live life on our own terms.
- We need to be clear with our language to avoid misunderstandings. What I propose is that we start by sharing our own labels in relation to disability. There is precedent for this: you have probably seen speakers who share with the audience their pronouns in order to be clear about their gender identity (mine are him/his). We can do the same thing for disability if at the start of our presentations or professional development sessions we share what we call ourselves: person with disability, disabled person or ally are just a few of the options. We should then explain why we have chosen the labels we want to use for ourselves, and give other people the permission to use theirs. I know this suggestion will be controversial. There is a resistance to labels within the UDL movement (you’ve probably heard expressions such as “labels only belong on clothes”). However, I think labels need to be considered in context. It always depends on who is doing the labeling and why. If an outsider is using the label to demean or lessen the worth of a person, then yest that is problematic. But if insiders (members of a community) choose to use the label for themselves, then it can be empowering and a way to build community.
I personally consider myself a disabled person. While disability is not all of who I am, it is a big part of my identity. My disability is not something separate from who I am (which the term “person with a disability” implies). It shapes my world from the moment I open my eyes in the morning to the time I close them at night. It is not like a suitcase that I get to put down whenever I want to.
There are times when I can “pass.” When I am sitting in front of the computer or at a meeting most people can’t tell that I have a disability. After all, “I don’t look blind.” My eyes don’t look or act any differently than most sighted people. But the moment it is time to go and I have to take out my cane, the gig is up. I don’t always have the option of hiding my disability and neither do I want to do that. It took me some time to come to terms with my disability and to get comfortable in my own skin. I know that is a journey without a fixed timetable. As with most experiences in life, we all process the events in our lives differently, and besides, it is not a race. That is why I take no offense if someone says he or she is a “person with a disability.” That’s fine with me because that’s where they are in their journey, and I was once at that point too.
When I was first diagnosed with my visual impairment, I spent countless hours researching my condition and reading research articles (which by the way were way beyond my understanding as someone who does not have a medical background). It was my hope at that time that there would be some kind of treatment or innovative surgery I could get that would “fix” everything and return me to my former life as a sighted person. I followed the medical model because that is how I was first exposed to disability, through my medical diagnosis. At that point I saw my disability as the taking of something – the taking of my independence (as I could no longer drive). I am quite open in sharing that it was not a great time in my life.
It was only when I started to embrace my disability, when I started to see that I could work with it, instead of around it, that I started to thrive in my life, both professionally and personally. A key point was learning about the work of John Swain and Sally French and their Affirmative Model of Disability, which completely changed my perspective and the way I saw myself in relation to my disability. It no longer became something I had to overcome, but rather something that I drew strength from, even with the occasional frustrations that come from living in a world that doesn’t always accommodate my needs.
I don’t have all the answers, and this post is just a reflection of my own always evolving way of thinking about disability and what it means to be disabled. I cannot speak for someone who has another kind of disability, or even a person with a visual impairment for that matter. There is great variation even within my own community. Some of us need large print, but in my case large print is actually a barrier since it places more of the text outside my limited peripheral vision.
I welcome your feedback on this post, both good and bad. By engaging in difficult conversations, we continue to grow and evolve. I am so grateful for everyone who has shared their experiences on Katie’s blog, especially Joni Degner and Eric Moore. You should really read their posts. By sharing our experiences we give others permission to do the same, and in doing so we build community.
In closing, I want to leave you with a Maya Angelou quote my colleague Mindy Johnson shared with me that now informs how approach all of my work: “Do the best you can until you know better. Then when you know better, do better.” Let’s commit to always doing better and becoming more inclusive. And when we get it wrong (as we all will at some point), let’s commit to continuing these kinds of courageous conversations. We will be better for it.