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allergies and disability justice

Me and allergies BFFs

I have a shitton of allergies. No exaggeration, I think I’m currently over fifty different allergies to various pollens, foods, environmental factors, medications, etc. My allergies range from inconvenient to deadly. Since I started developing them as a teen, I’ve spent a lot of time, money, and energy managing my allergies so that I have a somewhat decent quality of life and, in some cases, not die.

Of my various disabilities, I recently realized that I spend more money and take more medication just to manage my allergies. That my allergies have been requiring me to make certain decisions about my life for a very long time in ways that impact my ability to exist out in the world, to work, and to socialize.

Here is a rundown of my current management regime and relative costs:

  1. I take on non-drowsy anti-histamine every day. The brand I buy (and I buy generic) usually goes for about $0.70/pill. So for a year I’m spending about $260 a year for this.
  2. During seasonal allergy time (for me this is any time that isn’t winter), I usually have to take drowsy/extra strong anti-histamines. Generic benedryl is usually what I use. These are much cheaper but I also need to use a lot of them. Maybe 3 or 4 a year. For about $10 each. So $30/year.
  3. I use a prescribed nasal spray everyday. This costs about $40 every two months or so. For a year: $240.
  4. I use prescribed eye drops as needed. Maybe use about two a year at $35/each. So $70/year.
  5. I also do immunotherapy (allergy shots). One year’s supple is generally $200.
  6. I also have an epipen. Which I don’t need to use often but they expire every two years and cost about $100/each. So let’s say $50/year.

This means my yearly total for managing my allergies is about:

$850.

That’s a lot of money. Only some of the above is covered by my current prescription subsidy from the government. In terms of my income, this is about three weeks worth of work. And this is just for allergies.

A further problem is that my allergies aren’t stable over time. So I can unpredictably become allergic to something or, more rarely, lose an allergy to something. A few years ago, I was tested again and it turned out that my deadly peanut allergy just… disappeared. Lol. I now happily eat peanut butter all the time. Unfortunately, I also developed ‘oral allergy syndrome’ within the past year, rendering me incapable of eating many of my favourite fruits and veggies (fresh, cooked is usually okay)1.

The above doesn’t even include my actual food allergies. Which, thankfully, aren’t that many but just enough to make eating an interesting experience at times. And to require some level of forethought and creativity to ensure I’m eating well (enough). One food allergy though, is the one that requires my epipen (shellfish). So while not plentiful, these have the best chance of killing me.

One allergy that has a serious impact on my daily living is photodermatitis (or photoallergy). In plain terms, I’m allergic to sunlight. It’s worse in the summer than the winter (but in winter I’m usually covered up anyway). I can spend about 15 minutes in direct sunlight before I start getting a rash (that’ll last up to a week). Sunscreen can extend my time to maybe an hour. The best solution is covering up. But this isn’t pleasant to do when its 26 degrees with 100% humidity (and potentially dangerous re: heat stroke).

I’m also allergic to most fragrances. Usually triggering headaches and nausea, or more ‘obvious’ allergy symptoms like sneezing, runny nose, itchy eyes, etc. This is something that has become progressive worse every year since I stopped smoking.

My seasonal allergies… Until most ppl see me during this time (especially before I started immunotherapy), most people don’t quite get how severe my seasonal allergies are. Its also hard to describe. I did have a picture (now lost) of the allergy test I go just before I started immunotherapy. My arms, within a minute of the skin prick, was covered in large, red hives signalling a severe allergy to many different grasses, weeds, and trees. Maybe the best way to describe it is that it was like having a permanent cold from about March to October (sinus headaches were frequent so even that was there).

At this particular point, a few years ago, was when I was literally starting to go to the walkin clinic and begging the doctors to do something, anything to help me. Why? Because I was fucking miserable. Moreover, in an attempt to ensure that I was functional enough to go to work, I was taking so much benedryl that I was frequently overdosing.

The interesting thing is that I had done a round of immunotherapy as a teen. This is, often, supposed to be a ‘permanent’ solution to reducing your reactions (for some people, eliminating them entirely). And, yeah, for about ten or so years after my allergies were annoying but most manageable. Until they suddenly weren’t and I was spending spring, summer, and fall regularly overdosing on benedryl.

Okay… but who cares?

I’m writing all of this out so that people understand where I’m coming from in the rest of this essay. Because… I googled ‘allergies’ and ‘disability justice’ today and found, within the first 8 or so pages of search results essentially nothing that was specifically about allergies. Instead, I found stuff like this2:

Fact: Multiple Chemical Sensitivity, or MCS, is a progressive neurological disease that can result in death. Asthma, which often causes sensitivity to fragrance-containing products, can also result in death. Whereas people with allergies might be inconvenienced or temporarily ill from exposure to an allergen (although some allergens are life-threatening to some people), many people with MCS suffer extreme harm from chemical and fragrance exposures, sometimes resulting in progressive and permanent brain and organ damage.

This was the tipping point for me to actually spend time writing about this. While I understand that many people, bc of how the medical-industrial complex works, get defensive about multipe chemical sensitivity (MCS). Many institutions don’t actually recognize this as a real thing.

But this mention of allergies trivializes it and only contributes, overall, to ableism. Seeing something that I experience and that has a constant, daily impact on my quality of life waved away as an ‘inconvenience’ or ‘temporary illness’ with a begrudging ‘hey, you might die but this isn’t as important as dying via MCS or asthma’. I just… fuck you forever.

It isn’t at all helpful to, in trying to establish the legitimacy and seriousness of whatever, to trivialize and dismiss another thing. Especially when both things can lead to death. And at this point, I’m fairly certain that allergies are killing more people than MCS. If only because allergies are more common than MCS.

You can die from both. Both are serious and ought to be treated as such.

Discourse around allergies, disability justice, and scent-free spaces

It is, thankfully, becoming more and more common for many shared spaces to require that participants are scent-free. And this isn’t just in activist circles, btw. My office is scent-free (I was told this on my very first day and rejoiced). Many of the professional conferences (ie, not activism shit) I’ve recently attended have scent-free policies. While I do find that outside of activist circles, scent-free policies aren’t really enforced in the way that they need to be. But. It’s at least a thing.

My problem with how this is usually performed or inacted in activist circles is that they tend to focus on MCS. And if allergies are mentioned at all, they are usually an afterthought. Moreover, because the few times allergies are specifically mentioned in terms of accessibility they are usually lumped in with MCS, giving it the appearance that the only allergies that might need accommodation are fragrance-related (but I’ll get into this later).

I also don’t think I’ve heard any self-identified disability justice advocate really mention allergies as a (possible) site of disability. I’m not blaming them, since if they don’t have allergies that they consider disabling than there really isn’t any reason for them to get into it (esp. since they have their own disabilities that are important and require attention). I guess I’m also somewhat… disappointed that even with googling and trying to find someone who has talked about this within the disability justice framework.

Which is also interesting because if you query “allergies disability justice” what you mostly pull up are various news articles about cases where some judge or other has decided that some allergies to count as a disability and must be accommodated. Or other resources about how to access social assistance based on allergies.

I also don’t recall a single instance of any activist event ever requesting participants to not bring any of the common deadly food allergies. Like. I’ve not seen one facebook event page asking people to not bring anything with peanuts to the event. Some people can be triggered by even the smell or via cross-contamination of some kind. Also have seen no evidence that safety teams are instructed on how to use an epipen or respond to anaphylaxis.

Honestly? Trying to navigate the world with a deadly food allergy often feels like playing russian roulette. You never actually know if you’ll get anaphylactic shock and just… die. You often need to make sure that at least one person attending knows your allergy, knows where your epipen is, and knows how to use it. While anaphylaxis is life threatening, it can be managed if people respond quickly and appropriately.

And yet… this total absence of telling people not to bring potentially deadly allergens to shared spaces is troubling to me. Especially when it is clear that many groups and people are really starting to take accessbility seriously, this oversight ought to be corrected. Especially since with these kinds of allergens they are relatively easy to accommodate (not bring peanuts to a collective space really isn’t that hard and unlikely to create undue hardship for another person).

Above all, it’d be nice to see allergies actually taken seriously in teh Discourse and in activist spaces.

allergies as disability

One of the interesting things about allergies is that the line between ‘inconvenience’ and ‘disability’ is really fuzzy and hasn’t really been explored (no, I’m not willing to just follow government regulations about what they think counts as a disabling allergy). It also (but not quite) one of those common disabilities that people are generally aware of but have a certain level of mainstreamness about them.

Like being near-sighted and wearing glasses. Glasses are an assistive technology. Being near-sighted isn’t a disability under the social model precisely because accommodation for this is common and accessible to a lot of people. People don’t (usually) get discriminated against for being near-sighted (especially not in the post-contact lenses world).

But there are degrees, here. I wear glasses. My prescription, however, isn’t super strong. I think I might’ve just passed the threshold for being required to wear them while driving (but for many years was not required). So my sight is still pretty decent but just bad enough that I really appreciate the extra clarity my glasses provide.

My partner however? If he were to lose or break his glasses, he’d be completely non-functional until we could replace them. This could easily tip into being an actual disability, depending on our access to eye care (his prescriptions are, understandably, very expensive – even with a cheap frame, the lenses alone tend to cost several hundred dollars).

Such ranges also exist for allergies. I’d peg ‘inconvenient’ allergies as the sort where you’re allergic to cats and are fine pretty much all the time until someone invites you over but doesn’t tell you about their cat. So your eyes get itchy, you sneeze a bit, its not awesome, but once you leave it clears up and life goes on. Or hay fever that is treatable by a single non-drowsy anti-histamine. Or a food allergy that causes mild hives. Or contact allergies that make you itchy and not much else. These? Are inconvenient.

But then you get into the range of allergies that cause anaphylaxis and kill people. Which, sure, is the most extreme outcome. But then there are also other ways for severity to be expressed. Like my experience with seasonal allergies before immunotherapy, where I was overdosing on benedryl a few times a week so that I could be minimally functional. Or the rarer, ‘exotic’ allergies like photoallergies. Or cold urticaria (ie, having an allergy to cold – I knew someone in school with this and, yes, its real)3. I also know people so allergic to cats that being around someone with lots of cat hair on their clothing will trigger a reaction.

And sure, while in a lot of cases taking an anti-histamine will solve the problem, it also depends on the severity of the reaction and which anti-histamine you take. For my more severe reactions, I tend to find that only benedryl (or generics of it) will work. This medication causes drowsiness. If I’m trying to participate in some sort of activity and I get a severe reaction and need to take one? My day is pretty much over.

Some allergies also require complete avoidance. Like my sun allergy. Anti-histamines can help, but they don’t prevent or stop the rashes. The only ‘treatment’ is not being in direct sunlight OR in a shaded place where a lot of sun will be reflect into (ie, under an umbrella on the beach). My fragrance one is the same, doesn’t matter how much anti-histamines I’m on, frangrance will still give me a headache and nausea for the rest of the day.

But where is the line?

I’m not sure it is either desirable or possible to demarcate any particular threshold for when allergies become disabling. Ultimately, I think it is up to the particular allergy sufferer. It has taken me a while, but I do think some of my mine (or the whole of them altogether) are disabling.

I mean. If you look at the introduction and see how much money I spend every year just to ensure that I stay alive and am functional… If you look at my lifestyle and how everyday of my life I have to factor in and negotiate my decisions around my allergies… If you look at the cumulative impact of all of my allergies as a whole on my quality of life… If you consider that I might accidentally die as a result of one of my allergies… If you consider how my mobility and ability to participate in a large portion of events is severely restricted by my sun allergy… If you consider that I have an allergic reaction to something every single day and that this is a chronic thing for me…

Yeah. Altogether, I do think this is one of my disabilities. Its hard not see it that when, now that I’ve spend some time really thinking about my allergies and how they impact my life.

I think other ppl can decide for themselves whether or not they want to consider their own allergies a disability or not.

Beyond the politics of self-identification, however, allergies have been considered – based on context – to be a disability in both Canada and the US. This is one thing I learned by googling ‘allergies disability justice’ today. The context matters a lot and many of the situations appear to involve food-related allergies (mostly bc of the anaphylaxis factor). With various cases of courts determining that, yes, food allergies are required to be accommodated.

This is still something that is being worked out. And, sure, part of the problem is exemplified by the vast diversity of allergies and the varying levels of severity. I’ve also really dealt with a lot of… situations wherein an allergy – medically speaking – really isn’t disabling. But under the social model? There are people who adamantly think that keeping peanuts out of schools if only one child is allergic is a ‘step too far’4:

“Since when is it the responsibility of the schools to police your child? If your child has such severe allergies, maybe you should home school and not expect the school to do your job for you. It’s enough that schools won’t allow peanuts and peanut butter, how can they make sure ALL allergens are kept away? I think this is taking things just one step too far!”

People can be thoughtless assholes when it comes to allergies. And some of them consider even making small accommodations too much work. This is something that I’ve found increasingly frustrating in regards to eating at restaurants.

With people getting more awareness of the various sensitivities, intolerances, and allergies that exist out there, I get that more and more people are asking for ‘special’ treatment at restaurants. These legitimate requests are compounded by fad dieting. People also have come to roll their eyes and simply consider us picky eaters rather than…. say someone who doesn’t feel like dying that day.

Given that allergies can be relatively easy to manage, in comparison to other kinds of disabilities, it’s easy to see why some people just don’t consider them as such. And why, legally speaking, they occupy such a grey zone.

Suggestions for how to accommodate for allergies

So how can orgs/groups/individuals wanting to factor in allergies start to make spaces accessible?

This is a rather difficult prospect given the huge variety of allergies and disparate ranges of severity. I think a good place to start is to focus on the most common causes of anaphylaxis5:

  • medications
  • foods like peanuts, tree nuts, fish, wheat, shellfish, milk, eggs
  • insect stings from bees, yellow jackets, wasps, hornets, and fire ants

Now, medication is unlikely to be a worry for many organizers, so I’d not worry too much about this. However, it might be useful (in case of a medical emergency) to know if any participants have deadly allergies to medications.

Insect stings are also unlikely to require much attention. Except if any of the activities are planned to be outside during the time of the year when these insects are active. This also means, that if nothing is planned in advance, that unplanned location changes do not happen.

For me, it has happened in more than a few occassions that at a conference or whatever if the day is nice and sunny, some sessions will move outside to take advantage of the weather. While I do understand this, it makes it instantly inaccessible to me. If I’ve planned on being indoors all day, I might not have sunscreen, sufficient clothing, or whatever to prevent me getting a rash from sun exposure.

Likewise, I imagine a person at risk for anaphylaxis from insect stings would prefer to know in advance if there are going to be outdoor activities. And that for activities advertised as being indoors, that they don’t move outdoors – regardless of how nice the day might be.

As far as food is concerned, some of these are worse than others? I mentioned that some people have gone into anaphylactic shock after smelling peanuts. Overall, do some research and ban anything that is on this level. All food, all of it, should have a complete list of ingredients. And, if anything is going to have a specific allergen in it, take extra care to prevent cross-contamination. This isn’t only about preparation but serving (ie, do not serve a dish with peanuts even on the same table as anything else, since it is easy to switch serving utensils and cross-contaminate that way).

The food thing is already somewhat addressed by the fairly common practise of asking attendees for dietary requirements. But it might be useful for organizers to know if there is a possibility of anaphylaxis and to make appropriate plans (ie, have a contact person for that attendee when they arrive who will be present during meals or most of the day, who will be told where the epipen is and what to do in case of anaphylactic shock).

All dietary needs are important. But doing the above will help ensure that, um, no one dies from careless food handling or oversight. Especially since anaphylaxis can be very quick, having staff/organizers know who is at risk and what to do could literally save lives.

(But as always… medical information shouldn’t be mandatory nor shared beyond the people who need to know, at least not without the person’s consent).

Scent is already a fairly common thing addressed, but it might be good for other environmental factors to be included in this. Things like warning people if your venue might have a lot of dust. Or mold. Asking participants to wearing something freshly washed and with as little animal hair as possible. As people to notify you if they have service animals so that some kind of compromise can be worked out with ppl who’re allergic.

Perhaps when ppl are registering or giving RSVPs, indicate that if they have any severe allergies that they should mention them so that some sort of action to mitigate reactions can be done.

Hopes for the future

Beyond specific events or spaces, it’d be nice to see more general awareness as to how allergies can be disabling. Either medically/physically or within the social model. And that people… just take allergies seriously as a thing.

I know, for me, having one of the rare, exotic allergies means that whenever I tell people I’m allergic to the sun, they usually don’t believe me. Just met with incredulity and disbelief. I get it. I really do. Being allergic to the sun is fucking ridiculous. It doesn’t make any sense. It didn’t even make sense to me until I understood the physiology of it (I just knew that sun exposure = week long super itchy rashes). Being allergic to cold or water is also fucking ridiculous.

Ridiculous or not, they are real and we do exist. And while I can’t speak to the other ‘exotic’ allergies, I know my sun one really has a major impact on my life. There are simply a lot of things I cannot do. And my movement in late spring, summer, and early fall is seriously restricted. I have to carefully calculate how much time I’ll be outside that day and ensure that, for example, I don’t take a twenty minute walk in the sun. I don’t go to parks. Or really do any outdoor activities at all. I can’t go to the beach6. Being outside in the shade isn’t always possible (concrete, water, etc all reflect UV rays).

More than anything, I think at this point I’d appreciate if people really considered and conceived of allergies as their own distinct thing. Not just as an afterthought when declaring a space scent-free for ppl with MCS or Asthma, especially since allergies reach much further than fragrance. And people could die.

Sadly, I’ve been dealing with my allergies for so long and I’m so used to the restrictions on my life as a result, that it rarely occurs to me to ask for accommodations beyond (pls don’t put shellfish in things so I don’t die). I’m fairly certain I’m not the only allergy sufferer who’s simply adjusted to this and thinks that we have sole responsibility for managing our allergies.

But we aren’t. Because we can’t control everything in our environment. And other people, the community, does play an important role in ensuring that we can fully participate within it.

  1. [This is such a major pain in the ass I can’t even. I get depressed whenever I look at the known cross-reactions because I’m allergic to all of those things. I haven’t tested each cross-reaction, but there is a good chunk in there that have triggered reactions. Here’s a list of ones I’ve logged so far: peaches, bananas, nectarines, plums, melons, cucumber, cantaloupe, honeydew, watermelon, (I think tomatoes but i’m having trouble remembering atm). This is pretty much a list of all of my favourite fruits. So. Yeah. Fucking awesome. 

  2. https://web.archive.org/web/20151121131803/http://www.peggymunson.com/mcs/myths.html 

  3. Omg. I just googled ‘uncommon allergies’ and, yeah, sunlight is one of them. So is cold. But also water, leather, sweat, exercise, and a few others. 

  4. https://web.archive.org/web/20151121154315/http://www.cbc.ca/radio/thecurrent/jan-23-2014-1.2908738/checking-in-food-allergies-in-schools-disability-the-justice-system-and-the-grey-wolf-no-longer-endangered-1.2908739 

  5. https://web.archive.org/web/20151121160120/http://www.mayoclinic.org/diseases-conditions/anaphylaxis/basics/causes/con-20014324 

  6. The last time I went, and I put on sunscreen every hour and sat under an umbrella, I had rashes for a week after over a large portion of my body