I’m going to talk about accessibility. I want you to have a think. Then I want you to pause, reflect and keep thinking.
Before I start, think about what disability access means to you. What sort of things does accessibility require? Make a note of what comes to your head.
While you’re working on that, I’m going to tell you what I often do when I arrive somewhere new. I scan my surroundings to determine how accessible the particular space is. Is the furniture too high or too low or too small? Is there enough space for a wheelchair/scooter to pass through comfortably (with space left over for a companion)? Are there windows? Is there any mold? fresh paint? air freshener? Is there enough space to breathe or get away from other people? Is the lift/ramp in good order and close by? Are there railings? Are there (solid, multiple) chairs? Are there any sharp edges or prominent features that could make movement unsafe? These are just a few of the things that may go through my mind. And I do it all as quickly and discreetly as I can, because I don’t want to stand out to any abled folk who may be observing me. And you know what? Most of these things, most of the time, aren’t relevant to my disability. I’m looking out for my fellow PWD. Which is to say that these things are not that hard to pick up.
Now, when you were thinking about disability access, you probably thought of transcripts and ramps and disabled bathrooms. And those things are important. But did you think about invisible access for invisible disabilities? Where well-known accessibility measures like those transcripts, ramps and bathrooms are often not available (or not properly) the measures that don’t immediately spring to an abled person’s mind don’t have a hope in hell.* And, speaking as someone with an invisible chronic illness, having to out myself in order to perhaps be granted access, with the very real possibility of not being believed, is one of the most unpleasant parts of my life.** I doubt you thought about access to services for people who aren’t accessing them in person. I doubt you’ve ever thought about how to give directions without visual reference. In fact, I bet most of the things you thought of were those that were in your face.
Which brings me to my next point. Accessibility is not just about alternatives and gadgets and adaptations. It’s about you.*** It’s about all the abled people who are in charge of accessibility measures. And that’s not just those of you in a position of authority, that’s you making your way down the street. Remember, you often don’t know who is and who isn’t a PWD, and you don’t know the kind of impact you’re having on them. The world is designed to suit the abled, and it’s every last one of you impacting us. It’s about your attitudes making our lives harder. (Did you ever consider how awful it is to have a loud, public discussion of one’s needs? Did you ever consider that forcing your idea of help on us might be detrimental? Did you consider the kind of devastation you privileging your perceptions over our experiences can lead to?****) It’s about whether you decide our enjoyment, our livelihoods, our life experiences and our humanity are worth your attention.
I am asking for your attention.
Now, I want you to think radically. Accessibility should not be framed as making adaptations to suit those others, those deviant disabled bodies and minds. If there is a space, text, service, mechanism, happening, situation, tradition, something that people are going to engage with, everyone needs to be accommodated.***** My point being. Don’t think of us as others, even deserving others, you must reach out to and adapt to. We’re not brave, broken little souls. We’re human beings. Think of every single person having different needs and circumstances, and centring those people who are having a tougher time of it. Think of providing everyone with what they need. If someone needs more than most, they ought to be given it. Not because they are other, but because they are a person. We’re no more other, or tiresome, or disgusting than you with your various troubles, quirks and loves. The only difference between you and me is that the world has dictated that I am low and you are whole. That’s all.
Think of privileging those bodies and minds that are marginalised in so many spaces. If you think that it’s too daunting, too much, consider what it means for PWD and consider that you’d be happy to do it if it was you. You adapt to circumstances all the time, and you may want to examine your motivations if you’re reluctant to accommodate PWD. Do whatever you can do with the resources you have. Access for my kind of people should not be an afterthought, it should be right there, in your plan, in your consciousness, because it is at the very least as vital as the kind of attention you give everybody else.
I want you to rethink access. Mostly, I want you to THINK.
I have some related links for you to help you with the thinking:
Alena of Perspectives from a Blind Point of View – fabulous blog, by the way – asks What Does Accessibility Mean to Me?
You may have heard of feminist science fiction convention Wiscon. I haven’t attended myself, but they seem pretty accessible from their website. This is an example of doing it right.
WildlyParenthetical delves into invisible disabilities and how they get that way.
I picked up the phrase ‘invisible access for invisible disabilities’ from Lauredhel. She has some suggestions on the subject here.
If you want to learn more about what kind of thing can constitute privileging your perceptions over our lived experience, specific to invisible illness, see annaham’s Invisible Illness Bingo and Invisible Illness Bingo 2: Back for Revenge.
See Jo Tamar’s Accessibility, choice, accomodation and equality. Because alternatives aren’t always good enough, and they’re frequently a tool for demeaning us further.
Cripchick and commenters have lots of suggestions.
Also, this.
Remember that all this, this post, these links, are background. There is no prescriptive means of dealing with PWD; we are not a monolith. Consider the person you’re dealing with as an individual with individual needs. I can barely believe I actually had to type that.
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*Actually, hell’s probably more accessible than some of the places I’ve been to.
**And you would just laugh at how utterly bizarre that is if you knew the nature of my illness.
*** For me personally, it’s mostly about you. Other people have a different ratio with regard to these things.
**** ‘You look much better today.’ ‘Maybe you should try losing weight.’ ‘Maybe you’re just tired.’ ‘Are you sure that’s what happened?’ ‘My cousin’s boss’ sister’s friend’s tried this thing you should try.’ Just don’t. How dare you presume that we don’t know how to handle ourselves? If we want help, we will most likely ask. These suggestions act to obscure problems, meaning that we’re not given the help we want/need because everyone else has moved on, ’cause you’ve already solved it, right? You do not know better than us.
***** Were you thinking in terms of access to buildings? Open your mind. Think about daily experience.
Note: The possible disclaimer applies to this post.
Thank you.
Yes. Good. Thank you.
I was walking across campus at one of the universities where I do a bit of contract teaching today, and realised that because it runs down a slope, that able bodied people could get around quite easily with the various steps and stairs, but it was a long way around everything for people who use wheelchairs. But I didn’t take the next step and realise that it would be even more inaccessible for people with some invisible disabilities. I also realised, thanks to your post, that I do a bit too much talking when I’m writing something on the whiteboard – very difficult for people who are hearing impaired.
I don’t have anything to add, just saying I’m listening.
What Ariane said. I can’t add anything but I’m glad for this perspective, thanks for writing this. I’ll check out the links too.
Since I don’t think these two points meant to be in contention, I was hoping you would tell me your thoughts on access awareness vs not obscuring someone else’s problems.
I like what you said about not obscuring someone’s problems by offering or, as I believe was implied, insisting help. As much as I am a fan of personal responsibility, I am also a big fan of people listening first and offering suggestions much, much later when suggestions are clearly not being requested.
So my question has to do with this mindset, of not trying to assume the other’s plight, or trying to solve it for them, or offering suggestions for something that you have said we should assume they know how to best handle in their own lives. How do I reconcile that with the being aware of other’s access. It’s not that I think they are mututally exclusive by any right, just wanted to hear your thoughts.
My reflection on this post led to two conclusions, that I should take time to consider the myriad obsticals potentially facing many different people, and that my suggestions would be naieve (I believe I have been classified as the priveleged previously), unproductive, and generally unwelcome. I respect both of these perspectives, but have a tough time reconciling them.
Your thoughts?
Nance, Deborah, Ariane and shiny: I’m glad.
Thomas, I am done with coaxing you out of obfuscation. I am not going to take the time and energy to reword what I have already said to fit into frameworks you are comfortable with. You are not to comment here until you have done some social justice 101 reading. If I find a comment from you in my mod queue, on any subject, however benign you may think it is, at any time in the near future, you are getting banned.
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i’m an OT student, and a person recently diagnosed with ADHD.
thank you so much for your brilliant insights–they are invaluable to me.
Thank you so much, Diane.
Still behind in my reading, but this is beautiful. Well done.
Thank you.
As someone with an invisible disability, and as one who has been reading a lot about disability issues online lately without having been exposed to discussion of them much at all before 1) getting online, and 2) discovering the kinds of sites where such things are considered important, when I read this: think about what disability access means to you. What sort of things does accessibility require? I thought, it requires understanding what a disability is, which you then make clear in your analysis is where the problem begins. Understanding the nature of disability, how varied it is and how great the range of potential impacts on the ways disabled people collectively interface with the larger society, requires a great deal of knowledge to be acquired and considered and applied. Which is why it’s so necessary that these issues be dealt with systemically, rather than each business, institution, organization, or person who deals with the public being expected to manage that individually. Aside from the fact that a lot will simply not bother, and many will not realize the need until someone in their lives is affected, its just a huge waste of energy and other resources which could be going into restructuring society to create fewer problems for the disabled and less confusion for those not disabled in the first place. I’m not suggesting that individuals can’t and shouldn’t be expected to take responsibility for their own behavior and their own impact on others just as a fundamental principle, but its also the case that nobody, no matter how well-intentioned, thinks of everything, and information from those of us who suffer from disabilities is necessary to formulating policy, but we cannot and should not be expected to educate individuals and organizations one by one, over and over, everywhere we go. A formal public process for dealing with the integration of all disabled persons at every level of society is needed, and it has to start with recognizing how many and varied are the kinds of disabilities in this world, which might also help to modify the view of people who think requiring accommodation of disabilities is an exercise in inconveniencing the vast majority of (non-disabled) people for the benefit of a small number of disabled people. The truth is once you begin to realize what a variety of circumstances and conditions the word “disabled” covers, it becomes apparent how wrong the common perception of the relative proportion of those two populations is.
I’m so glad to find people addressing these issues so thoughtfully online. Before I had a computer, literally the only coverage of disability issues I ever saw were the periodic stories in the local rag about an individual who makes a practice of demanding wheelchair access at all public facilities locally, and what a huge pain in the ass he is considered to be.
Oh, co-signed, Maud. I have to rush off, so no time to make links, but google Diary of a Goldfish, Three Rivers Fog, Hoyden About Town, Trouble is Everywhere (it’s a Dreamwidth) and Random Babble – lots of socially conscious disability writing. Also: please stick around, I am so appreciating your comments.
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