Do you find your disability to be an important part of who you are, or not so much?
Yes, I find my disability to be a really important part of who I am. Being forced to advocate for myself and my disability was actually one of the driving forces that led to me to get my undergraduate degree in Human Services and led me to where I am right now, in graduate school pursuing my Masters of Social Work. I think my disability also drives me to be a more compassionate and understanding person, because I have been so deeply impacted by those who have been understanding to my allergies and accommodations as well as those who haven’t been understanding or compassionate.
“Being forced to advocate for myself and my disability... led me to where I am right now, in graduate school pursuing my Masters of Social Work.”
Furthermore, the fact that my disability is something that so many people don’t fully understand affects my identity because I really try and educate people on food allergies and work for better accommodations for people with food allergies.
As you have grown, how has your relationship with your body (or mind) changed?
I have had life-threatening food allergies since I was an infant but my relationship with my body changed drastically when I had a reaction on campus in the first quarter of my freshman year of college. I ended up having to run out of class and use an epi-pen in the middle of campus and was later transported to the emergency room. I’d had allergic reactions that put me in the emergency room before this experience, but this was most impactful because it was the first experience where I wasn’t surrounded by people that knew me and knew how to help me. It woke me up to the fact that I had been coasting by all this time and I needed to take my allergies more seriously because it was all on me. This experience also changed my relationship with my body because I was diagnosed with Post Traumatic Stress Disorder as a result of this and I began a period of disordered eating that lasted for 6 months because every time I tried to eat food I would have a panic attack and would tell myself I was having an allergic reaction.
Although I was able to seek help for my PTSD and disordered eating, this experience has forever changed the way I relate to my mind and body. Food allergies require being in-touch with your body and mindful of how you are feeling always because that’s the first step to recognizing a reaction, but that can also be anxiety-producing and exhausting because every time my body starts to act up I have to assess if it’s actually an allergic reaction.
How long have you been disabled? Whether it has been your whole life or your impairment occurred more recently, how has that affected the way you have experienced the world?
I was diagnosed with a life-threatening allergy to peanuts and tree nuts when I was a year old. However, it wasn’t until I had to advocate for accommodations and make an ADA claim in my freshman year of college that I realized I was disabled. Although that feels silly to say now, in my experience food allergies had never been acknowledged when discussing disability, so I didn’t realize I had a place in the disability community.
“I didn’t realize I had a place in the disability community.”
If you had the opportunity to be nondisabled, would you take it? Why?
No, I wouldn’t take away my disability as a thoughtful choice because it’s such a big part of my identity and it has driven me to advocate and accomplish things that I’m not sure I would have done if I didn’t have my disability to push me. However, if i was to wake up tomorrow and my food allergy was gone by itself I would feel relieved, because having life-threatening food allergies requires me to be hyper-conscious at all times, which can be exhausting.
Do you have close friends that are also disabled? Are you part of a group or community for disabled people? How have these relationships affected your own sense of identity?
Yes, my best friend from high school has Crohn’s disease and was diagnosed when we were in college. I definitely think it’s brought us closer because we can relate to navigating the oft difficult waters of asking for accommodations in school and the workplace. Having someone close to me to share that identity strengthens my own identity as a disabled person.
I am also a part of several online support groups for people with food allergies. These groups have impacted my identity because they allow me to feel understood and not alone in the barriers I face in terms of encountering ableism and fighting for accommodations. Food allergies are something that so many people scoff at or ignore the severity of, so being in a group of people who acknowledge the severity of food allergies is refreshing and the groups also act as a great resource for questions about accommodations and advocacy.
How has your disability affected intimate relationships for you?
My food allergies have affected my intimate relationships in that when I was dating, it was the first thing I mentioned when things got physical because I can and have had an allergic reaction and gone to the emergency room after being kissed by someone who didn’t realize they had eaten something with nuts in it. It’s also affected my intimate relationships because if someone isn’t concerned about my allergies it’s an immediate deal-breaker. I have a serious boyfriend who is very conscious of my allergies and educates himself about allergy-related things which is really important to me, especially because I want to have kids some day and it’s likely I could have a kid with life-threatening food allergies so I want any partner to be prepared for that.
“If someone isn’t concerned about my allergies it’s an immediate deal-breaker.”
How has your disability affected relationships with your family?
Growing up, my family and I treated my allergies a lot less carefully than I do now. There wasn’t the same wealth of knowledge that there is now, and we were not as concerned with things like cross contamination so we always had my allergens in the house. After I went through my experience in my freshman year of college that led me to take my allergies a lot more seriously, my family also changed with me and changed their practices. My family has always been the most understanding about my allergies.
How has your disability impacted your experiences with the healthcare industry?
My disability has impacted my healthcare experiences just by how expensive it is- both epi-pens and the emergency room visits that I am required to make after I give myself my epi-pen. Additionally, I have my own allergist who deals with my allergy portion of my health, but when I talk about my allergies with some of my other doctors, I often encounter ignorance about food allergies that is pretty alarming for healthcare professionals.
How has your disability impacted your experiences with education?
My food allergies have greatly impacted my experience with education. When I was a freshman in undergrad I had to make an ADA claim with the school because they refused to accommodate my food allergy by allowing me to have a dining plan that didn’t require eating in the dining halls. These school professionals told me that I was overreacting and that I should just eat in the dining hall despite the fact that there were allergens everywhere, poor cross contamination practices, and the fact that they hardly ever labeled for allergens. I had my accommodations rejected and ended up working with the disability office to have them push my claim, which they were able to do but it took several months. This impacted my education because I was so incredibly disappointed to be attending a school that did not want to accommodate my life-threatening allergies that I even thought of transferring because of what an incredibly stressful experience the entire process was. If it wasn’t for the amazing people at the Disability office who helped me, I likely would have transferred.
“I even thought of transferring because of what an incredibly stressful experience the entire process was.”
My allergies also impact my education in that I have to advocate for myself both in the classroom and in my practicum settings.
However, I also feel that my food allergies have made my education more positive in certain ways. When advocating for myself and my accommodations, I often get a lot of questions from my classmates about food allergies, and I’m able to provide a lot of information about food allergies and explain how serious they are. Being in Social Work and Human Services, I find it important to help my classmates understand allergies because they are likely to encounter clients with food allergies in the future and I want those clients to feel understood and have their allergies taken seriously. My practicum is at Child Protective Services and I find it especially important that my other classmates there understand food allergies because if a child has food allergies, a social worker should be making sure that everyone who has placement of that child knows how to keep a child with food allergies safe.
What is the worst experience of ableism you’ve dealt with?
When I was a sophomore in college, I participated in WWU’s lobby day. When I signed up, they had an area on the form to indicate any allergies or accommodations, so I noted that I have an anaphylactic allergy to peanuts and tree nuts. On the bus there, the leaders started to pass out food with peanut butter in it and I asked them if they could wait to hand out that part of the snack after the bus had stopped, because I can have a reaction by being in an enclosed space with my allergen everywhere. At first the leader agreed but then a couple minutes later spoke to me again, seeming annoyed at what I had asked and tried to pressure me to just let them do it, but I stood my ground because I had notified them of my disability. Then, on the bus ride back to school the leaders again tried to hand out food with peanut butter in it and when I asked them if they could wait to hand the that part of the snack out until we were off the bus they acted extremely put off and several people loudly complained and shamed me for having to accommodate me. I posted a Facebook status expressing disappointment about how an event that was organized around advocating for issues, including issues around accessibility blatantly ignored the accommodations of one of its attendees. As a result I later received an apology email that implied that if I was frustrated it was solely my fault for not explaining my allergy well enough and made no acknowledgment of how rudely I had been treated or the fact that I was made to feel like a burden on two separate occasions.
“Several people loudly complained and shamed me for having to accommodate me.”
If there was one thing you could get every nondisabled person to understand, what would it be?
I wish people could understand how serious food allergies are and how frustrating it can be to hear people talk about them like they are a joke. For instance, joking about food allergies isn’t very off-limits, in fact there’s plenty of memes and comedians who make jokes about how ridiculous it is that their kid can’t bring peanut butter to school. I wish people understand how demeaning those jokes are and how they work to perpetuate the idea that people with food allergies are just dramatic and that food allergies don’t deserve accommodations.