23 When Sustainability + Accessibility Collide (episode page)
Description: In this week’s episode, Cara talks to PhD candidate in Disability Studies, Kim Sauder, about #OrangeGate, the collision of sustainability and accessibility, and her blog post about the kerfuffle.
Hey there and welcome to In Sickness + In Health, a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.
This week’s episode is about something that happened on, and then off Twitter in the past week that dovetails with many issues affecting disabled people. This situation has been most heated where environmentalism, accessibility, and food politics collide, which is something I spend a lot of time thinking about.
Kim Sauder, a PhD candidate in disability studies, wrote a wonderful piece about it on her wonderful blog, The Crippled Scholar, so I asked her about it, because I found myself baffled by it as the situation escalated. So I’ll let her give you a little explainer on exactly what went down with what has now become known as #orangegate...
[Clip of Kim explaining situation]
[intro part two]
If you’ve never had any experience with disability and/or chronic illness, and aren’t close with anyone who has, it might be hard to imagine why people—especially young people—might have a hard time peeling an orange, and therefor have a use for pre-peeled citrus fruit. Like Kim said in the opening clip, it’s not unreasonable for people to look at that photo and see the ridiculousness over the potential for accessibility. This is largely because even though people with disabilities are the largest minority group in the US, disability has been almost entirely erased from our culture. It is perceived, if at all, as something very marginal, affecting only a small portion of the population, so accessibility is often an afterthought, an accident, or ignored altogether. But there’s an awful lot more of us than most people realize.
Listener Lynette shared with me her reasons for buying pre-prepared food. She’s a 22 year old from Michigan who lives with ankylosing spondylitis, reactive arthritis, and fibromyalgia. Symptoms like chronic pain, dexterity and mobility issues, as well as brain fog and fatigue can all make cooking and independence a challenge, like she explains:
[intro part three]
And it’s not just people with mobility and dexterity disabilities, pre-prepared and prepared food help people with a variety of disabilities, though most of these solutions are not universally accessible. There are plenty of disabled people for whom even that orange container is still inaccessible, because it wasn’t really designed with accessibility in mind, let alone universal accessibility, which is something quite difficult to achieve, even when you /are/ doing it on purpose.
This situation could of course spin off into a million other conversations. Chief among them would be the cost of being disabled, and the socioeconomic issues that keep so many disabled people in poverty.
Let’s be honest: the majority of disabled people are likely not shopping at Whole Foods. Many disabled people simply can’t afford to spend extra at fancy pants grocery stores, or on pre-cut produce, and often don’t get access to fresh produce at all. And this could spin off into another conversation about how often we’re told that cooking and eating a whole food diet is simpler, and superior, and if we just ate better, we’d /get/ better… which as we’ve talked about many times on this show, is an oversimplification of how all this stuff works.
I’ve been thinking about this situation a lot over the last few days. Frankly, far more than I’d like to, because this whole thing about the oranges is just ridiculous. I find it ridiculous, because the oranges themselves are a red herring. We can jump down the rabbit hole of 10,000 arguments from either side of this issue, but as Kim points out, it gets us no closer to making the world a more accessible place, no closer to making the world a greener place, and no closer to making so-called “progressive" movements more inclusive to the disabled people they so often leave behind.
When reading those comments from people on the anti-peeled orange side of this, one thing I frequently saw was some variation on the phrase “why don’t you just…” and you can fill in that blank with any number of allegedly simple solutions to a very complex problem. I’ve encountered this in my own life too, when attempting to explain to people why I find something difficult or inaccessible. Cooking, which I’ve had to give up almost entirely, is a perfect example of this:
There are so many places in the process, at each step of the way in meal planning, grocery shopping, prepping, cooking, eating, and cleaning up afterwards, that I run into barriers. Many of those barriers and multilayered, which makes it all very daunting.
Sure, it’s not impossible, and for some people cooking is an integral part of their self care strategy, but as a person with /extremely/ limited energy resources, I have to /very/ carefully consider how I use that energy. But every time I try to talk to someone who does not live with these issues about the fact that I find cooking too difficult to do on a regular basis, they almost instantly snap back with suggestions of “Why don’t you just… get your groceries delivered, or get something like Blue Apron, or hire a housekeeper, or buy adaptive cooking tools, or get a stool to sit on while cooking…” the list goes on.
I could do all of those things and still have a really hard time cooking and feeding myself. All of which goes without saying, that many of those measures are prohibitively expensive, and cost money that I, as a disabled person who is unable to work, do not have. Instead I wind up getting prepared food, which is also expensive, and not the best use of my limited and dwindling financial resources. It's not good for the environment, it’s not ideal, but is often my best option, and feeding myself is still a huge source of stress for me.
This is not a request for your advice on how to feed myself, and that “why don’t you just…” reflex seems, to me, to be the same, or at least related to the phenomenon of unsolicited medical advice. And if you listen to this show regularly, you know how much I love unsolicited medical advice. It is almost always ill-informed and obnoxious, and so are rigid and unsolicited suggestions for accessibility measures. You’ll almost always get it wrong, so just don’t do it.
Pro tip: if a disabled person tries to tell you about their experience and explains why something is difficult or inaccessible for them, instead of making a suggestion of something that I promise you they’ve already thought of, listen. And if you still insist on talking, ask if and how you can help.
You can find additional comments and threads from actual disabled people in the Storify I linked to in the show notes. I did not include the negative push back on purpose as self care measure, because so many of those comments were ableist, and very quickly and easily crossed over into eugenics. But if you poke around the tweets I compiled, or the orange gate hashtag, you’ll find them quite easily. At the bottom of Kim’s blog post, which I've also linked to, are some examples of press about the oranges and reactions to it, which was what moved me to do an episode about this.
The truth is being disabled and/or chronically ill is often in direct conflict with environmentalism, and it’s something many of us feel a great deal of guilt about. Kim talks about some of that in this episode, but something that I saw many people bring up on Twitter that we didn’t get to in our conversation is the detritus of living with chronic illness. This of course varies by person, treatment, abilities, and condition, but many of us live every day with guilt about the footprint our health conditions cause us to have.
For example, for those of us with hydration needs, our lives may be a graveyard of Gatorade or Powerade bottles; for those with a port for IV fluids or medication, there is a tremendous amount of sterile supplies that are single use to avoid potentially deadly infections, and the same goes for anyone with a feeding tube, catheter, ostomy, or other medical equipment. To a lesser extent this is also true for people that take injectable medication. Medical waste is often considered a biohazard, and not recyclable for safety reasons. And don’t even get me started on how many pill bottles we go through.
While there may be some solutions to some of these problems, expecting chronically ill and disabled people to conform to a rigid standard of sustainability is unrealistic, and not at all inclusive. And resisting feedback from Actual Disabled People won’t get us anywhere. As Kim points out, it’s possible for us to work together to find more sustainable AND accessible solutions to problems, instead of aspiring to a future where disability and it’s inconvenient truths no longer exist.
The environment is definitely in trouble, and here in the US we FOR SURE have a problem with excessive waste, especially when it comes to food. As my terrible environmental science teacher in high school always said, “The planet will always be here, whether we still are is up to us.” And while that statement has a few problems, it’s a pretty good way to understand why sustainability /does/ matter. We all need to be thinking about ways we can reduce our footprints, but there’s much bigger fish to fry than #orangegate.
As always you can find Kim’s blog, The Crippled Scholar, and the referenced post in the show notes, as well as reactions from other disabled people, linked to in the show notes. Find resources and more from us at insicknesspod.com, and on social media @insicknesspod. If you have any experience with the collision of sustainability and accessibility, or have ideas about how we can better bring those two things together, email me at email@example.com. I’m also still looking for one or two more people to help us with transcription so the show itself can be more accessible, so if you’re interested in helping out with that, please contact me.
I hope you enjoy this episode…
Thank you so much for listening to In Sickness + In Health, if you enjoy the show, please take a moment to rate and review it on iTunes. And if you can help with transcribing our episodes, shoot me an email at firstname.lastname@example.org. Find resources and more from us at insicknesspod.com and on social media @insicknesspod. And don’t forget to be excellent to yourselves and each other.