When I Picture Myself Being Included, I Don’t See Myself Without My Disabilities

I want to live in a world where my existence is just accepted. I don’t want to have to undergo drastic physical or neurological changes to be perceived as a normal part the world. When I imagine myself in an inclusive and accepting world, I see myself as me unchanged, still disabled but simply in a world where that does not matter.

And yet this is not what people think I should see. This is evidenced by this video, produced for World Down Syndrome Day

In the video, a narrator talks about her life aspirations and goals while the actor Olivia Wilde lives them out. The implication is that the narrator cannot do those things for some reason. That reason is revealed at the end to be because she has Down Syndrome (DS). The narrator concludes with “This is how I see myself, how do you see me?”

The intent of the video is to convey that people with DS should be able to do all of the things talked about in the video. Unfortunately the way that message is delivered is deeply misguided.

It frames the narrator as wanting not only to be accepted and to have opportunities but seeing herself achieving them without Down Syndrome. It looks a lot less like the intended “I want to have what you have” and more like “I need to be fundamentally different to achieve acceptance and opportunity”.

It suggests (though the producers object) that people with DS should want to be Olivia Wilde rather than themselves. From a larger standpoint it says that disabled people generally should see themselves as not being disabled.

It is unfortunate that the producers of this video felt that it would be more effective to have a nondisabled celebrity play out the life and dreams of someone with DS. Besides completely missing the mark on their stated intentions, the people who produced this video lost the opportunity to model how acceptance and inclusion can look.

The video Would have been far more poignant and entirely less infuriating if it had shown the narrator engaging in the activities she described rather than Olivia Wilde.

The use of Olivia Wilde completely undercuts not only the need for disabled people to have opportunities and acceptance because no one questions a beautiful celebrity being able to do those things. People do however regularly question not only whether disable people can do something but whether they should be allowed to.

Sure the nondisabled viewer may finish watching that video and think “of course people with DS should be able to do all those things” but the sentiment isn’t likely to lead to action because without a clear guide what passes for acceptance and opportunity will be defined by nondisabled people. I promise you it will not look like the images of Olivia Wilde with someone with DS swapped in.

It’s interesting that this video came out around the same time as the short film “Guest Room” starring Lauren Potter did.


<p><a href=”https://vimeo.com/120125960″>Guest Room</a> from <a href=”https://vimeo.com/joshuatate”>Joshua Tate</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

This film clearly illustrates why relying on giving nondisabled viewers “the feels” is not going to be effective because it shows so clearly how the reality of people with DS makes nondisabled people uncomfortable. Not just people like the woman in the hair salon who utters “you’re so good with her” but the people closest to the protagonist and her boyfriend. His parents are really uncomfortable with the idea of the two of them becoming parents. Particularly if the baby also ends up having DS (for more on why “Guest Room” is amazing click here).

Charities and nondisabled advocates have been exploiting people’s immediate gut reactions for decades. It is really easy to get people to think “of course the narrator should be accepted”. It is a far harder thing to actually get them to actual acceptance.

This is why it is so important to actively confront the real discomfort that society has with the reality of the full participation of disabled people in all aspects of life, as “Guest Room” does brilliantly. It is also equally important to model and show disabled people participating and being accepted.

When we dream about a better more inclusive reality, we shouldn’t show the status quo and suggest that people who don’t usually fit in should have that too. We should show a world where they actually do.

Or is that really too hard for you to imagine?

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Bad Crip: A Probably Not Comprehensive Definition

Bad Crip

Bad Crip: noun [bǽd krɪ́p]

A disabled who has ever been or is any one or a combination of the following according to a nondisabled person/people;

  1. is not disabled enough (someone who wants accommodations even though there are totally more disabled people who “deserve” to be accommodated more)
  2. is too disabled (someone who asks for accommodations that actually require work to provide)*
  3. can do something a nondisabled person assumed that they couldn’t
  4. couldn’t do something a nondisabled person thought they should
  5. doesn’t “look disabled” (oh I’m sorry, I forgot to dress up as the International Symbol of Accessibility today)
  6. isn’t being inspirational™ right now (see also: Supercrip)
  7. isn’t letting a nondisabled person be inspirational™ for helping them just because the nondisabled person wants to (see also: Charity Poster Child)
  8. doesn’t feel like answering a nondisabled person’s unsolicited questions about their personal medical information (thinks they should have the same right to privacy as everyone else)
  9. wonders why if nondisabled people are so obsessed with their personal medical information, their actual medical diagnosis can’t seem to make it past spellcheck (hemiplegia? I think you actually mean paraplegia)**
  10. doesn’t feel like explaining that “yes disabled people have sex too” to random nondisabled people who think it’s ok to ask strangers about their sex lives (because apparently this is still something people are confused about)
  11. doesn’t care about the unsolicited medical advice from complete strangers (yes we’ve heard of that cream, it’s effects have nothing to do with us)
  12. doesn’t care if you pray for them to be healed
  13. doesn’t think they need to be healed at all
  14. expects nondisabled people to include disabled people in conversations that impact them rather than just accept whatever solutions nondisabled people come up with (otherwise known as: so you’ve come up with a “solution” that doesn’t address disabled people’s concerns and somehow still manages to maintain the status quo)
  15. thinks that they are a human being and deserves to be treated like one
  16. and is generally completely fine with being disabled.

 

Did I miss anything?

*It is somehow entirely possible to be both not disabled enough and too disabled at the same time.

**According to spellcheck, I don’t exist

Update

Because of course I missed things

Embeded tweet from Pamela Hope reads

17. Shuts down able-splaining.

18. Talks about ableism.

19. Has/Hasn’t $.

20. Doesn’t ask permission.

Oranges, Access, Opposition and “Yes, but…”

As things begin to cool down on the discussion around whether or not Whole Foods or other grocers should sell peeled oranges (you can read about how that all started here). I would like to take the time to look back at the discourse and unpack some of the things that came up again and again.

One of the most sweeping arguments used to silence disabled activists in the debate was the argument that “the discussion was about the environment, not disability”. The thing is you can only have one without the other if you have somehow managed to exclude disabled people from the human race. There are about a billion of us after all so that’s a big erasure.

I would also like to reiterate that disabled people have as much a vested interest in protecting the environment as everyone else. Which is why it’s so frustrating that requests to be included in the conversation were often brushed aside. I think it’s also worth mentioning that the way people tried to curb to growth of the disabled population was to sterilize them. Which I can say with all due sarcasm was a complete failure.

Disabled activists have been aware of the negative impact of industrialization on people’s health since the early 20th century. Helen Keller (who was a bad ass) linked industrial working conditions to disablement in the 1920s. She advocated for better working conditions but was brushed off.

Fast forward to this century and we’re still hearing about how conditions in factories are causing unnecessary disablement (I think we all remember the Apple factory scandal).

Being aware of and fighting for the environment keeps people healthier. Beyond that when considering those of us who are already disabled, we will be joining you in either that greener future or that environmental wasteland should sustainable initiatives fail.

Someone  who commented on my previous blog post pointed out that disabled people would not fair particularly well in a dystopian wasteland. Which is  true, but on the other hand we are equally unlikely to thrive in a green utopia built on the understanding that are needs are secondary and can be put aside until the planet has been saved. It is a far easier thing to build in accessibility as you go forward then it is to add it in later. Particularly when the rhetoric going in is that we have to wait. How great do you think the drive to implement accessibility will be when our concerns have been constantly sidelined?

And we absolutely will be in that future with you, disability isn’t going anywhere, even if the current population dies off, more will be born or made through accident or injury. Disability is a permanent part of humanity, better get used to that now. We’ll all be happier for it in the end.

This debate has never been about sacrificing the environment for the sake of disabled people but asking to be considered as part of the solution.

When I engaged in debate with people, I begged them to try and consider intersecting environmentalism with accessibility and was almost universally met with a wall of “yes, but…”, rather than engage with the idea that we should try and find a way to do both accessibility and sustainability, people tried to smugly shut the whole conversation down. I will now deal with some of the big ones.

Yes, but plastic is bad.

I’m totally with you, which is why I want things to be sustainable and accessible. For example looking at alternate ways to package prepared fruits and vegetables that would be more sustainable.

Yes, but those Whole Foods oranges cost like six bucks apiece, that’s not very accessible is it?

Again, you are totally right. The thing is Whole Foods is not the only grocery store and this whole discussion really needs to be bigger than Whole Foods, for accessibility to be meaningful it needs to be as widespread as possible and Whole Foods is hardly the only grocer to include precut or prepared fruits and vegetables.

Also for context things that are accessible are far to often more expensive, that’s not a reason for the thing to not exist, it’s a reason to challenge why things that benefit disabled people tend to cost more.

Yes, but Whole Foods pulled those oranges…

I already covered why this needs to be bigger than Whole Foods but the situation is actually more complicated. Sure Whole Food’s pulled those specific oranges and sent out this cheeky tweet

Image description: Peeled oranges stacked in mason jars with the caption “Is this more a peeling?”

The thing is this tweet is just pandering to the people who were so furious in the first place. Whole Foods later confirmed to Upworthy that.

“Many of our customers love the convenience that our cut produce offers, and this was a simple case where a handful of stores experimented with a seasonal product. Orange and tangerine slices have long been a staple favorite in our stores, and we’ll continue to offer them alone with other sliced produce options for customers who are looking for added convenience. We’re glad some customers pointed out this particular product so we could take a closer look and leave Sumos in their natural packaging — the peel.”

So, they just stopped selling peeled seasonal oranges. Yet they pandered to the group of people who were ignoring disabled people and by extension shutting down disabled people. It was only later that they more quietly confirmed that they still had a wide variety of plastic packaged fruits and vegetables for the convenience of disabled people.

By the time this came out, the internet was already crowing about their victory.

Moving on, probably the smuggest of the Yes, buts was

Yes, but aren’t those plastic containers hard to open if you have limited hand dexterity…

And here you thought you had us. This was actually the most insidious argument against accessibility because if it were to be accepted it would undermine every single fight for accessibility, not just the ones involving the environment.

Here’s the thing, there is no such thing as one size fits all accessibility. Accessibility is always going to need to be looked at in terms of options not a singular fix. Arguing that this helps to few people is to constantly relegate all disabled people to a lack of access to more than just food.

the thing is that looking for sustainable options to accessibility is also a great time to start looking at ways to increase the accessibility thus widening the number of people benefited. It would also help highlight people for whom packaging proves to be to large a barrier, so that we can work to make sure that they to get access to food.

When people had exhausted their “yes, but” arguments, they tended to turn to “what, about…” arguments in which they tried to come up with fixes that still gave them the overall win. Most of these suggestions were met with exasperation from disabled people.

The reason for the exasperation was twofold. Firstly, these suggestions were most often made without actually consulting people on what they wanted, needed or were capable of. So they tended to be both ineffective and left disabled people feeling like the person they were speaking to thought that we had failed a single attempt at peeling an orange and had never considered alternate options. Sometimes these suggestions did come from people who seemed genuinely engaged in the conversation but they were generally nicer in their suggestions and acknowledged from the get go that they might be ineffective. The two most common were.

Have you tried one of those plastic (hey isn’t that the thing that got us in this mess in the first place) orange peelers, BTW you can buy them on amazon?

Yes, I have, it didn’t work.

Have you tried using a knife (occasionally specifying a paring knife)

No, and I’m not going to, that’s a quick way to lose a finger. Limited hand dexterity plus spherical object plus sharp implement is a recipe for disaster.

I was literally begging people for a dialogue but it often felt like talking to a brick wall, at one point I had just told a guy that to truly succeed at accessibility, engaging with disabled people is key when he decided that he had not only solved the orange situation but fixed decades of prejudice as well.

People had been suggesting that we ask people who worked in the produce section to peel the oranges for us. A solution that was widely panned by disabled people for a number of reasons. The suggestion usually went like this

“I work at a grocery store and if a disabled person asked me to peel an orange for them I’d be happy to and I’m sure all of my coworkers would as well”

I’ll take these individuals at their word that they’d be happy to help, I’ll take the fact that they extended the offer to include their coworkers with a huge grain of salt.

There are a number of issues with this scenario.

First we have to find an employee, identify ourselves as disabled and hope they are actually as nice as has been suggested. Then we have to wait while they take our produce somewhere clean so that it can be prepared for us.

So much could go wrong, as I and many disabled asking people for help gets mixed results. Even if they agree they might be busy when we find them so they may say “I just have to finish helping this other customer” or “Just let me finish stocking this shelf” even if they help immediately we still have to wait for them to prepare the food. Our time has value. It is far preferable to just be able to grab what we want off the shelf and go about our day.

What is the person we ask isn’t open minded or decides that we aren’t really disabled or disabled enough to warrant assistance and either demands proof putting us in the awkward position of either trying to justify our disabilities or deciding the violation of our privacy isn’t worth it.

Believe me, doubting someone’s disability and by extension their right to accommodation is real and people get nasty if they think you are either impersonating a disabled person or trying to get special treatment that they don’t think you should be entitled to. The internet is littered with heartbreaking stories of people getting hateful notes on their cars if someone doesn’t think they’re disabled enough to use accessible parking. I actually know someone this happened to (like this one). I have no doubt that even if the staff member didn’t say anything nasty, other customers will.

Sure, we could report abusive staff behaviour to a store manager but that’s just another drain on our time and I’d rather be able to just grab what I want and limit opportunities to experience hateful vitriol.

The guy I was talking about before answered my concerns about abuse with “well, disabled people shouldn’t feel like they have to hide their disabilities and telling people about them will help educate people”.

I would love it if I lived in a world where disabilities could just be a fact of life unworthy of comment, but I don’t live in that world. I live in a world where disclosing my disability shuts me out of jobs (that I’m perfectly qualified for), told that I don’t belong in university (even though my GPA was high). I am so saddened that people think that the onus on fixing discrimination is on disabled people because we can’t. Fixing discrimination needs the cooperation of the people doing the discriminating. Treating disabled people like our needs are special interests is just to be handled not on the same level as those of nondisabled people’s but on a case by case basis by “nice people” reinforces that.

Having to ask for food in a way that isn’t open and available to everyone is a form of gatekeeping and keeps our needs separate and special. This is not the way to equality.

Ultimately, the thing is if we combined the need for sustainability for accessibility, we could go beyond those oranges and start looking at better packaging for everything. I don’t think prepared foods are going anywhere anytime soon. It would be a nice first step to at least start looking for more sustainable packaging to put not only precut fruits and veggies but tubs of spinach and frozen vegetables.

It’s time to look at the bigger picture beyond those oranges, that bigger picture includes disabled people. Please include us in the conversation. Whether it be about food or any other aspect of sustainability.

We started the conversation without you, for more on how this discussion affected us and some of our brainstormed ideas for accessible sustainability click here. Please join in.

 

 

 

When Accessibility gets Labeled Wasteful

Note on Accessibility

There has been some concerns about the contrast on this blog, unfortunately some find it hard to read light text on a dark background while others prefer it. I am looking into getting accessibility options for the blog but until then if you prefer to read dark text on a light background, this post is available on Medium here.

 

So there’s a debate going on, on Twitter right now between disabled people and people who either claim to care about the environment and or just want to complain about “lazy people”

The tweet that started it all

orangegate cropped

Image Description: tweet with a picture of peeled oranges in plastic containers on a grocery store (whole foods) shelf. Tweet reads “If only nature could find a way to cover these oranges so we didn’t need to waste so much plastic on them”

The original tweet has been shared over 70,000 times. Whole Foods has apparently agreed to remove the prepeeled oranges from their stores. Environmentalists and those who hate laziness rejoice!

The problem is that this discourse completely ignores how preprepared food impacts people with disabilities. The most common complaints about the sale of these oranges is either the wastefulness of the additional packaging (which is true but somewhat misdirected as I’ll discuss later) or that anyone who buys this must be incomprehensibly lazy.

As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food. I actively avoid eating oranges, not because I dislike them (they are definitely tasty) but because I have so much difficulty peeling them. Any attempt to peel an orange is likely to result in an unappetizing mess because I’ve squeezed the orange to hard while trying to maneuver it for peel removal.

I don’t have access to peeled oranges from my grocery store though I’d probably take advantage of them if I did. I do buy precut vegetables all the time because it is more convenient and safer for me to do so.

Preparing food with limited mobility is both hugely time consuming and potentially dangerous. While adapted cooking tools do exist to help offset those issues they are really expensive (I wrote about that here).

Anything that helps make my regular acts of daily life safer and more convenient is always a plus. So I was one of a number of disabled people who pushed back against the wholesale shaming of preprepared foods. The responses I got were informative in looking at how nondisabled people disregard and try and shut down discussions of accessibility. Rebuttals to inserting disability and accessibility into the conversation included what I consider the most ridiculous attempt to maintain the moral high ground. It was,

I mean accessibility is nice and all but you know that wasn’t the thinking behind this product. It wasn’t designed for disabled people.

You know what, that’s probably entirely true. Whole foods was probably trying to cater to the convenience aspect. This is supported by the fact that the protest against the product on environmental and anti-lazy grounds was so successful.

The thing is this argument is hilariously irrelevant. In fact it shows that things don’t need to be directly conceived as accessible products to function that way. In many way things that are accidentally accessible are better than things that are specifically designed to be. This is because things that are accidentally accessible are marketed and available to everyone and are thus likely to be more easily available that an accessible product which is likely only sold in specialized stores. Seriously, accessibility that requires no thought to implement is the best.

Other arguments I got were,

Peeled oranges have a shorter shelf life so how convenient are they really?

This is true and it indicates just how much planning has to go into living while disabled. I have to plan my meals around the fresh produce I buy more strictly that others because I buy some things precut. This can be inconvenient but it pales in comparison to being forced to rely more heavily on canned or other processed foods that have a longer shelf life. My disability doesn’t disappear just because a whole head of cauliflower will last longer in my fridge than smaller prepared florettes.

and

Peeled oranges are certainly going to cost more than unpeeled and isn’t that a barrier?

Also true but here’s the thing, being disabled is expensive and costs for accessible products can be prohibitive. It is however easier to budget for the extra dollar or two that prepared fruits and vegetables are going to cost every couple weeks than the dozens or hundreds of dollars buying adapted cooking equipment will cost up front. This is a case where the cost should be the cause for protest not the cost being used as an excuse to protest the product. I’m all for my life being more affordable.

Other disabled activists dealt with other arguments. The person who argued most ardently with me was actually pretty tame and seemed more clueless than anything as they clearly didn’t think their arguments through and went away quietly when I calmly rebutted their arguments. Others were not so lucky. Things got a lot messier and ableist as Twitter user Ana Mardoll learned as she systematically tore apart those arguments (for a full view of this thread click here)

Issues arose when protesters prioritized the environment over the experiences of disabled people. Though as Ana points out those plastic food containers are hardly new. They are a ubiquitous sight at any grocery store deli housing things like artisanal cheese, salads and mac & cheese. Yet how is it that the wastefulness arguments crops up over something that is accessible, rather than the widespread use of plastic containers generally. Not to mention at least these look like the could be reused or repurposed. Where is the protest over bags of prepared salad? I guess peeling an orange is to easy but the convenience of salad in a plastic bag is to much to be denied.

Ana further points out that disability inherently comes with a greater need for product consumption. Disabled people need mobility aids and other tools that inevitably have an impact on the environment. Many of the people she encountered appeared to suggest that in the fight for the environment, disabled people are too inconvenient and should not be accommodated.

People who conceded that disabled people should be able to buy peeled and prepared food were sometimes still unwilling to give up the environmental angle and suggested that we should just ask the clerk at the register to peel the oranges upon purchase.

This is both an issue of hygiene because, I pretty sure those oranges in containers were peeled in an environment that was more controlled for hygiene than the store checkout where the clerk has been in contact with dozens of people and their money without the benefit of regular cleaning.

Also disabled people should not have to jump through additional hoops to get things which is both an unnecessary wate of time but forces us into a role where we must ask for help.

The issue here isn’t that the environment isn’t important. It absolutely is but environmentalism has most definitely ignored disability and accessibility. Basically if something is billed as environmental. It is almost certainly inaccessible. Consider the love affair with ogling (though mostly not actually moving into) tiny houses. No micro home is ever going to be wheelchair accessible and many of them depend on loft space accessed by a ladder for sleeping so even ambulatory people with limited mobility can’t use them. They are a popular trend in cutting the carbon footprint though. Downsizing generally is considered the easiest way to become more environmentally friendly. It is however just not really an option for disabled people where additional space and adapted devices are required for daily living.

Far to often if a location heavily touts its low environmental impact, you can assume it’s going to be inaccessible because they are cutting electrical use by not having things like an elevator.

I keep thinking of my stay at the Planet Traveler Hostel in Toronto several years ago while in town briefly for my sister’s wedding (before I moved here for school). It is touted as being very environmentally friendly. While there the owner bragged about all the environmental upgrades. The thing is you can’t get anywhere in the building without having to go up or down at least one and usually more flights of stairs. Stair that are narrow and pretty steep. I showed up the with my luggage and wearing my AFO so stairs not the greatest. I managed but it was uncomfortable and time consuming. If I was any less mobile than I am, it wouldn’t have been an option and I’d have had to beg family members for money to pay for a hotel (as I had been unemployed for over a year at that point and had spent the last of my money on the plane ticket)

I would love to see containers with prepared food get more environmentally friendly but more importantly environmentalists need to start considering disability and accessibility whether it be in finding more sustainable way to create the products we rely on to accessible sustainable housing. What I don’t want to see is people throwing disabled people under the bus because they’d rather get rid of a product than figure out a way to deliver it sustainably.

Also if your main concern over the peeled oranges was a rage over widespread laziness. Basically anything that benefits lazy people is going to be accessible to some degree so embrace the convenience (or just don’t buy it) and don’t add a level of shame to buying a product that actually makes our lives easier and which in conjunction with other similar products can actually improve our independence and quality of life.

Updated to add this horrendous defense

So basically disabled people should not be allowed to expect or demand better access to food because we never used to have it. *sigh*

and the argument is off Twitter and Whole Foods is being condemned by the environmally conscious site Treehugger here ableism is unfortunately winning the wider war for narrative dominance.

Update 2

The Huffington Post has gotten on the “Thank god, Whole Foods scrapped this thing” bandwagon with no mention of how disabled people have engaged in the conversation.

Both Reuters and GOOD have written about this and managed to mention the disability perspective.

Also from Mashable

Update 3

This horrible article from Global Citizen is a thing. It presents the disabled protesters as whiny and ill informed and further suggests that we have loads of accessible food options (no sources were cited for this claim)

Update 4

A great blog post from Antioch College Food Committee which actually starts to unpack the inaccessibility of much environmental activism and is committed to considering how their choices in eco living might impact access to food.

Update 5

Image description: Peeled oranges stacked in mason jars with the caption “Is this more a peeling?”

So Whole Foods sent out this Tweet which pretty much confirms that they at least have not considered the disability aspect as mason jars may be more environmentally friendly but they are certainly less easy to open that a plastic tub. So much for requests for more accessibility along with sustainability. While I’m sure they are not actually selling these jarred oranges. It shows that they are not listening to this side of the conversation.