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Designing Accessibility by Default
Your thoughts on disability, accommodations, and not forcing people to *ask* for help
This week, I’m collecting your comments on making space for disability, and considering how big that tent can be. I’ll also have a review of two books on disability and design coming out in the next issue of Plough. Next week, I’ll have highlights from our discussion of the caregiving penalty in our social security safety net.
Previously, I shared three stories about disability and dignity. One was about how broad the definition of “disability” could be, one was a plea for religious communities to be visibly welcoming of disability, and one was an essay on assisted suicide and whether it can ever be a purely individual decision.
I posed two questions at the end of the collection of recommendations:
Where in your life do you most frequently encounter people with visible disabilities? What accommodations made that possible?
Where do you or someone you know inhabit the fringes of disability? How did you decide whether “disabled” fit your understanding of your needs?
To lead off, I really appreciated these comments from Elizabeth about the difference between being open to requests and proactively making accommodations.
I’ve seen the conversation about accessibility for disabilities and other special needs go poorly. Often, those in power will say something like, “Well, if someone needed accommodations, they’d ask, and then we’d help.” But sometimes leaders don’t seem to appreciate that their reactive stance is already a barrier to accessibility.
But this is a convicting topic for me. I’d like to think of myself as an advocate for the marginalized, but my ideals have been challenged as that’s hit closer to home. Someone in my family has trouble hearing, and to be honest, I haven’t always been the most gracious about accommodating their needs when it actually requires something concrete of me (for example, remembering to speak louder than my normal register). You’d think that would be so simple, and it should be, but it’s really exposed a lot of my own selfishness. Anyway, this is embarrassing to share, but I’m learning that creating accessibility might actually require, uh, conscious personal effort on the part of those for whom the system already works. So I want to try to keep that in mind going forward.
I did a poor job of this last night! I was moderating a debate, and waved away a mic, since I’ve got a pretty loud voice, and I wanted to cultivate a more intimate, conversational tone for the room.
I wanted the flattening effect of unamplified voices, rather than the “I AM THE SPEAKER” sense of a dais and a mic, especially when I needed attendees to take seriously that they were free to ask questions or give a speech.
I had to take a mic, though, because they wanted to record the event… and it was a good thing I did, because one student had some hearing problems and needed people to use a mic (and use it well). But I hadn’t thought about the possible tradeoffs when I began.
Barbara said that this discussion and her own experiences made her understand why people feel a pull toward assisted suicide:
The problem, though, is that some of them might not want to recognize that they are disabled. It's a matter of pride, that they can manage. They don't want to recognize it. Or declaring vulnerability makes them more vulnerable. They think about how they came to this time in life, especially if they neglected their health. It's very sobering.
They are fearful of what being disabled actually means, the type of support they might require. Included, their fears that those around them, younger relatives might not want to bother, or might want to put them in care because their needs are overwhelming.
If we teach people, day by day, that dependence makes them disgusting, we should expect they won’t reveal their needs to us. (And we may find ourselves unable to directly acknowledge our own needs, even to ourselves). I do find parenting a toddler helpful as counter-cultural training. It’s much easier for me to find her needs natural and then work to extend that understanding to others.
Catherine gave a positive example, talking about her experience with her partner, near the end of her life:
I'll never forget a small family conference with my adult daughter Nancy, and my life partner, Marge, because Marge was beginning to experience a lot of memory loss and confusion. When Marge said "I don't want to be a burden," my daughter exclaimed "We WANT you to be a burden!" It still brings tears to my eyes that she said that so spontaneously. For the years after that, I was able to remind Marge of what Nancy had said, and it would lift her spirits—and I'm sure it helped Marge realize and ask for what she realized she needed, whether it was a rollator or a ramp, or someone to play a game with her, or take her for an excursion to town for fun.
I particularly appreciated this example, since it’s all non-conventional-familial ties. It can be easy to think we’re only allowed to burden our family, but I find it very moving that it’s Catherine’s daughter who is the one to speak up and ask to be burdened, because that’s the shape love takes when the person you love is in need.
I’d also recommend Gilbert Meilaender’s essay, “I Want to Burden My Loved Ones.”
Finally, I liked this from K, on how the school where K teaches doesn’t always limit its thinking to disability, but simply to a broad spectrum of need.
I work for a community college with a sizeable population of students who qualify for any of a wide range of accommodations, including a number of students with visible disabilities (or at least that fall under the legal "disability" heading, even if they wouldn't consider themselves to have one)—limited mobility, deafness/hardness of hearing, neurodiversity, and others. I guess I haven't thought of accommodations primarily as making those encounters *possible,* so much as their being the logical consequence of the situation our students are in, which is that right now most people need some kind of postsecondary credential if they want a living-wage job. (And that's no knock on non-college options like trade schools, but many trades require a certain range of physical capability, which leaves some students with disabilities needing other options.) So once they're here, classes and services need to be accessible. […]
Figuring out "reasonable" accommodations in higher education can be tricky at times. For less complex situations, our Disability Services office has done a lot of plugging of Universal Design for Learning, which is basically that principle where, if you bake certain accommodations into your course or material design, everybody benefits (for example, making sure all videos have decent captions—helps students with hearing limitations, sure, but it's also helpful for non-native English speakers, as well as people like me who sometimes just have an easier time following an extended explanation if I can read it as well as hear it). Like another commenter said, one limitation is that you run up against your own selfishness a lot (it takes a lot more time to caption videos or find ones with existing decent captions—or even to arrange for our Deaf Studies students to add the captioning, as that program offers faculty and staff sometimes as a service). I'm glad I got a chance to learn about some of the UDL principles, though, and hope some students have been helped without needing to do anything special.
And Catherine provided one more example of designing accessibility in from the beginning, not as an afterthought:
There's a wheelchair-bound advocate in Atlanta, GA who almost singlehandedly got the Habitat for Humanity there to begin building all their homes as "visitable." I love this concept. It's kind to everyone—potential guests and to the inhabitants who want to stay at home even if they break a leg, or worse. I love the idea of extending hospitality—including hospitality to ourselves.
That example really hit home for me. We had to move in August, in too much of a rush and too tight a market to prioritize accessibility. But we have family members who are getting older, for whom a stoop and its steps can be a big problem. I’m hoping to have more flexibility next time.