When E2 was diagnosed with a plethora of allergies and so plunged us into a startling new world of food dangers, I began researching the subject. I was hoping to educate myself in the science and management of her condition, but found myself diving head first into its politics. I had never considered that food allergies would have a political element to them — indeed, I had never much considered food allergies at all — so I was amazed when I discovered what an inflammatory issues they can raise, creating a reaction that often borders on hate in otherwise ordinary people.
It was our realtor who really got me thinking about it. He has a client who has recently had to sell her house and up sticks because the local school district has no peanut policy and it is simply too dangerous to send her son to school there. When I mentioned E2′s allergies, the realtor suggested that perhaps I ought to be researching local allergy policies as well, so that we don’t end up in the same situation in a few years’ time. I was gobsmacked — I’d been thinking of E2′s allergies in terms of eliminating foods, not potential houses and towns and school districts!
My initial reaction, as an inexperienced allergy-parent, is that I’d want E2′s school to eliminate her most dangerous allergens (nuts and eggs) as much as they reasonably could, at least during her youngest years, and to set an example of support for her that would present a firm stance against any bullying or dangerous behaviour by her classmates. To me, in my position, it seemed reasonable to want a school to take steps if it could to ensure that its allergic students were safe while they were in the school’s care. But I could quickly see from my research that, to many people, it was not. To what seemed to be the majority of people, it was more reasonable for allergic students to eat their lunches separated from the rest of the children — at another table or perhaps in another room — and to be excluded from activities that might be dangerous to them (school birthday celebrations, field trips), or even to be segregated out altogether — homeschooled — rather than to have their medical needs impact the food choices and activities of the rest of the school.
Realising that I am very new to this and that my gut reaction is hardly an impartial one, I took a poll on a internet-forum I belong to, to get a better feel for others’ thoughts on the subject. The reaction backed up what I’d suspected: over 60% felt that no foods should be banned from schools, even if there were students with severe allergies to them, and that the more reasonable course of action was to segregate allergic kids to reduce the danger. I came away better educated, but deeply disheartened. I do not want E2 to be singled-out like that, ostracised from lunches and school activities. School is hard and children are cruel… I was hoping for a different attitude to emerge from my research, one that made it easier for my daughter to blend in rather than be excluded.
At one point in the discussion, I asked if severe allergies could be considered a disability. I was thinking in terms of them being recognised as the legitimate and serious medical conditions that they are — rather than less serious food preferences or intolerances as they often seem to be regarded — and thus being afforded a legal status which would compel schools to take the sorts of measures that are required for children with conventional disabilities. I was not trying to denigrate the enormous challenges that the disabled face or even to put allergies on the same level, just trying to think of a legal umbrella under which they could be placed, but my suggestion caused some offense in the discussion. I saw the point, suddenly suspected I was acting like the sort of over-precious parents that I instinctively dislike, and backed away. But I still wondered where allergies could be placed on the spectrum between full disability and full “normality”. Certainly a child who is only minutes away from death should he come into contact with a wayward peanut must be considered to be some distance away from “normal” on that spectrum. And when the penalty is that quick and that severe, are his parents over-reacting if they want to control his environment to remove that possibility as much as is possible?
So I was intrigued to see, only a couple of weeks later, that the Office of Civil Rights has asked a school board to re-examine its decision that a child with severe allergies did not have a disability and so did not warrant a 504 plan. The OCR found that,
“the Division’s decision that the Student is ineligible for Section 504 services could result in death or serious illness of the student, and that this case therefore involves ‘extraordinary circumstances’ that support a substantive OCR review of the result of that decision.”
It would appear there is something to this disability debate — something that, while rightly not calling an allergy a disability in the same sense as more conventional disabilities, yet still may eventually compel schools to take measures that handle allergies from a position of inclusion rather than exclusion, integration rather than segregation, accommodation rather than anger. I imagine the parents of children with conventional disabilities wanted the same for their children when the possibility of mainstream schooling first became a reality for them, and I suspect there was a similar hostility from the general public to the changes it would require, which has lessened over time. I hope that eventually severe food allergies can come to be seen in the same way.
And there is an unrealistic part of me that hopes that struggle can all be sorted and finished within the next four years, for E2′s sake.