In the past couple of months, I’ve spent a lot of time reviewing curriculum and reading some research papers/essays that some people trying to be decent allies have done. A lot of them do an okay job on some things, and a less great job on others. But the most common issue seems to be conflating “disability” and “impairment” in a way that reflects a relatively un-nuanced understanding of the larger disability rights movement.
The most basic definition of the Social Model is along the lines of a person is disabled not by their impairment, but by their environment. Sadly, many people fail to look at this and see more than “society alone is to blame for disability.” I see people who say that social model isn’t realistic, based on this misconception, for individuals with extensive support needs.
This fails to take into account the possible corollary that within an appropriate context, a person’s impairment would be irrelevant to their abilities. Here’s an illustration of that, and a very standard one:
Imagine a wheelchair user named Mary. Mary’s condition includes impairments in being able to support herself due to muscle weakness, so she needs to use a chair to get around. Mary goes into a general world, and there she finds that people who she shares interests with meet in a space that is up stairs without an elevator, and that the coffee shop that said it was accessible actually has a stoop too high to wheel over. But if Mary goes into Accessible Town, elevators are in the buildings and the buildings were built/modded in a way that doesn’t involve stoops, and where the halls and doors are wide enough for her electric chair.
Mary didn’t magically stop having her impairment. Instead, her environment no longer interfered with her ability to participate fully in the community of Accessible Town. Unfortunately, people look at the stories of hypothetical people like Mary and go on to claim that that is all well and good for people with physical impairments, but that those with intellectual, developmental, or psychological impairments. This is inaccurate.
Bob is non-speaking, and uses alternative communication. In general world, people become impatient or dismissive because they do not want to deal with alternative communication. (This is similar to someone who doesn’t speak the typical language in a country they are visiting, unfortunately.) Bob goes to Accessible Town to meet his friend Sue, who is Deaf. People wait for his responses, don’t try to speak for him without his permission, and ask for help understanding when they do not. Bob’s other impairments might preclude him being able to learn much of the sign language his friend Sue uses to communicate, but her interpreter is great at making sure both of them can understand each other, even though they are speaking different languages and styles.
Bob is still non-speaking and still has intellectual impairments. But he is able to not only be actively involved in this community, but to communicate and hopefully have a good time with people with different access needs entirely. In this particular context, his impairments are not disabling him from this sort of participation. He has the support, both technically and emotionally, to be a full participant.
Some people see this as just a fantasy. The standard that they hold up as “too disabled” shifts to higher and higher support needs each time we try to explain how that hypothetical person could be supported. At some point, it has become a game, which is why my examples of the hypothetical Accessible Town will end. The truth is that what access looks like will vary by person. It isn’t an easy thing at all, especially in our current world, to create environments or communities that balance people’s access needs. This seems especially true when the most needed aspect of that process is patience and trust.
Note, if you will, that a condition that may be referred to as a disability might have traits that are not impairments in and of themselves. While stimming can be a coping response to an impairment, perhaps with self regulation or sensory hyper awareness, it is not necessarily so. In some cases it is simply used as an expression of emotion- atypical, sure, but not an impairment. The only disabling factor when it comes to stimming, barring those which involve self harm, is that other people are jerks about it and project prejudices and bigotry about how people are supposed to look. Essentially, it is simply other people’s assumptions, not the behavior interacting with the environment, that creates barriers. Yet it is one of the traits by which Autistics are diagnosed.
The next thing is something that I don’t know how to introduce properly. I see a lot of people approach the idea of Neurodiversity as though it is some new big thing completely different from other disability things. The truth is that it simply is applying the larger disability rights movement to the experiences of people with certain impairments, often defined as Autistics.* It is not some great new thing that we came up with via spontaneous generation, without previous foundations. It was built on the work of many people who live with a wide range of disabilities.
When we talk about both needing disability supports and treating our impairments as differences, we are not being disingenuous. We are not “talking both ways.” And it is not about denying legitimate supports. It is an incredibly nuanced issue, but one that can be summed up in a phrase that isn’t terribly new or specific to Autistics, and is in fact used on materials put out by the Administration on Intellectual and Developmental Disabilities (AIDD):
“Disability is a natural part of the Human Experience.”
This is the core idea here. Disability is one of many natural variances in what the human experience is like. It is not inherently shameful, ”freakish,” or unnatural. It does not rob us of our humanity– that is instead done by the perceptions of people. It is part of the amazing and beautiful diversity of our amazing species, Homo sapiens sapiens. It is a part of who we are and how we are put together.
This diversity can be powerful whether you are a religious creationist (indeed, there are hymns about this), an Atheist who believes in an unmitigated evolution, or any combination thereof. On a personal level, I believe in theistic evolution, and the vast diversity which allows for the survival of the species is something amazing and beautiful and spiritual for me. But I believe that the fact that we are so amazingly diverse, that we live in such a diverse world and are such a diverse species, is something that can be beautiful and powerful regardless of your beliefs. (Reminder: this is not a post about evolution or religion. These are tangential issues.)
When we talk about Autism or any other condition as a difference, we are not inherently denying that people with those conditions face disability. We are talking about how our conditions, and the impairments that might come along with them**, are a natural difference in the species. That those differences, like any number of others, should not bar access, dignity, or respect. That our differences are not things that should be eliminated, but that we should work towards a society in which difference is not a bar to access, be that because of changing attitudes or changing our physical environments.
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Talking about these distinctions isn’t something new. Please consider checking out some of the links below in which a number of other writers have covered similar issues.
That Crazy Crippled Chick: A Musing on the Word “Disabled”
Radical Neurodivergence Speaking: In this place, in this activity, I am not disabled.
Yes, That Too: Ableism is to Blame; A Social Construct
Autistic Hoya: Has an entire tag dedicated to this issue
Additionally, there’s a nice bullet-ed definition of the social model on the KASA website.
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* I personally consider Neurodiversity an issue that covers a wide range of individuals whose brains don’t exactly fit the “typical” brains or ways of working.
** Some people do not follow this, but they are a small subgroup who are often not aligned with the principles of the movement.
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. . . is Media. And media is how people express and communicate. Your voice is a medium, writing is a medium, art and video and. . . Yes, even poking someone repeatedly or jumping up and down or twitching your eyes in a pattern can be using a medium- your body- to communicate.
Everyone can use some sort of media. Before I get protests, I’m including pushing away unwanted things, fecal smearing, and tiny behaviors as well as examples of use of media. Sometimes our methods and medium is ignored or not understood, but that doesn’t make it less our medium. Sometimes we can’t even define exactly what we are communicating with our media yet, but it’s a process. Sometimes, figuring out what we mean- communicating with ourselves- is even more a part of using media than communicating with others.
When we are given the chance to be exposed to new media, new methods of expression, we are being given access to more opportunities to find the way to get it out right. To find communication. Eventually some of us do gain access to media that other people understand our use of. We learn to speak, or sing, or make music or videos. We paint, or sew, or costume; we write, decoupage, rearrange, and stack. We learn to dance, to write, and to find a new way to get the message across to that it is heard. Some of us aren’t given that chance, and some people even find that other people’s media aren’t for them.
When you are someone whose communication methods or media are ignored when you want them observed, it can be an opening to find a new medium to call your own. I learned to type, I gained those skills, and I suddenly had access to a much larger community than I had when speaking or shrieking or running away or stacking dolls gave me.
Indeed, the way that typing opened up writing to me was a better medium in the end for me than those I already had- my fluency writing now is better than my speaking was at the height of my verbal ability. I can use this medium, the medium of digitized writing by the hitting of keys, in times when I can’t even verbally speak at all, in times where my message as a kid might have been lost in other people’s reactions to my screaming wordlessly because I didn’t have the right words to speak any more.
Other people find other media. Some people won’t rely on their media the way I do. Some people might rely on it more.
How beautiful would a poem in just PECs, just the way they are handed, be?
Some media is painful, or dangerous, or scary- or even, in the case of Thich Quang Duc, deadly. Sometimes that can be powerful, while other times- like fecal smearing- it can be too alarming to observers and yes, dangerous, to get across anything, even your own distress. Sometimes the media we know isn’t sufficient to express what we mean- is your reaction to fecal smearing to recoil, maybe even freak out, or is it to find a way to figure out if someone is constipated? (If it’s the second one, I’m guessing you have a little experience with this cross media translation.)
In some cases, the solution is to find more ways to experience and express experience. Gaining new skills, or discovering alternatives. Other times it might be to just let other people react to you burning soundlessly.
The first time someone walked a friend through other signals for “my butt hurts” or that that type of pain is constipation, she nearly squeezed my hand off in joy.
Sometimes, a new medium is just a great way to accomplish something that you might not otherwise be able to do. Creating a more accurate and useful AAC device- even for less- or finding an easier way to collaboratively caption videos on the web. Applying dance to practical mobility difficulties or exploring how movements can be adapted to suit all types of bodies. Crafting tools to navigate difficult sensory environments or using virtual video distribution to share a larger message.
All media, in practice, in use, building and creating access, building and creating our futures.
What does it mean to build access together? What world can we envision when we apply love and justice to our media to find a world where we honor all people, regardless of ability, and their needs?
This summer, I and others will be attending the Allied Media Conference. It’s not a disability conference, or a topical conference. AMC is just brought together by people that believe that we can use a wide range of media to change the world. Within that larger vision, people with disabilities saw a vision for our justice, for a way to create access collectively.
Creating Collective Access allows us to make accessible the potential of media skill sharing, network, and vision planning that AMC promises to people who might not otherwise be able to be a part of it. PwD and our Chronically Ill brethren face access barriers beyond a lack of ramps and braille. Working together and treating access as a matter of community rather than individual “burden” allows us to be a part of building a world that includes us and the potential we can realize through media.
And in turn, we can make accessible the wider community- the world.
What does it mean to explore and honor our potentials, our media, our vision? What sort of world can we build when access is a part of what it means to build communities? When it is a natural part of the creation of change?
I invite others to write about what it means to you- personally or pon the grand scale- to access media. I also hope that you will help me and others by donating to CCA’s Indiegogo. We all came up with cool things to contribute to the returns. I’m contributing custom writing- poems for cheap but if you put in a lot an article or even ghost writing- and my mom is contributing reiki sessions and herbalist consults. Others are contributing zines, books, films, tarot readings, MCS friendly bath products, and even customized baking. You can find out more, including more details about CCA, on the CCA Indiegogo page.
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