Aleja is a senior anthropology and music double major at Pomona College. She has Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome, and she is proud to be a head mentor for DISCOVR, a disability peer mentor club at Pomona.
"Through grappling that sudden change, becoming more interested in advocacy and politics of all of it was a really fundamental transformation from a medical patient to a politicized community, from hating my body to understanding that yes my body doesn't work the way I would like it to all the time but also I'm operating in systems that other disabled people are operating in that are not kind to us or built for us. It’s been a really valuable reframe in terms of how I can love myself in both worlds." - Aleja
1. How did you become interested in disability advocacy?
I have a hereditary condition, so I’ve had it my whole life, but I didn't know I had it until I started having some pretty significant stuff happening around when I was 16 in high school. So I always talk about becoming disability … like I was going to be this way my whole life, it’s not like someone who had a car accident. But I definitely had a drastic identity change, where I went from a very intense athlete, intense level of not having limits on my body to having a whole lot of them. Through grappling that sudden change, becoming more interested in advocacy and politics of all of it was a really fundamental transformation from a medical patient to a politicized community, from hating my body to understanding that yes my body doesn't work the way I would like it to all the time but also I'm operating in systems that other disabled people are operating in that are not kind to us or built for us. It’s been a really valuable reframe in terms of how I can love myself in both worlds.
2. What has your experience been like on campus surrounding disability awareness and stigma, especially the disability mentorship program that you founded?
I would say it’s a mix, because I had exceedingly ableistic stuff towards me and people not wanting me in spaces, and that has not been my experience at Pomona...my professors have been exceedingly supportive, I’ve had like one or two ableist comments made towards me here, which were a daily thing in high school. It’s night and day about how safe I feel on campus… Most people at Pomona are considerate and caring. But that’s not the same thing as having institutional support systems that we deserve. I definitely think that a lot of stuff isn’t set up considering students like me are here, except there are lots of students like me...So I think with DISCOVR, we recognize there’s this lack of community, this is not something we talk about when we are pushing for certain changes at the ASPC level. Just not present on campus in any social way. Like you have accommodations and that's where disability ends. That’s not how I experience disability in my life, it’s part of everything if I have support in it: in my social identity, any time I’m interacting with academic institutional forces there’s something missing… If you talk about public representation, we get banners for all sorts of different groups' history months, disability has a history month, it’s never up there, I have yet to see any campus administrator talk about disability in any way besides something that needs to be accommodated for. According to a Campus Climate report, 27% of non-disabled students said they considered leaving Pomona at some point but 52% of disabled students said they had seriously considered leaving Pomona.
3. Do you think disabled individuals are perceived primarily as a medical issue or “broken” without considering other intersectional issues?
Yeah, I think for the most part, lots of people are like that, I think certain communities... for instance, the deaf community has been able to bond together a little bit more have been able to fight that a little more effectively. Although there's still high levels of kind of medicalization there, I definitely like for instance, I fight against the language to describe what's going on with myself, ... I tried to talk about having a hereditary condition instead of a disorder. I also try, for instance, the common terminology for what's going on with me is that my collagen is weak, which is like a highly loaded term. I think something more like loose or like, I don't know, floppy, you know, there's just like, ways of describing myself that are less negative. And it's not that I don't need medical help, right. The way I'm sitting here is that I take meds, the meds help me, meds are a good thing for me. But the idea that this is like, both solely a medical problem, and also the idea that because you need medicine, you're broken and need to be fixed are like too big weights, you kind of carry around.
4. How do you feel like someone could better support you when you visit a medical or mental health institution? Do you feel like there are ways that people can shift their mindset?
I think there's a general assumption, right, that like, doctors know how I need to be different... So one of the really awful ways our medical system is set up is that transitioning from pediatric doctors to adult doctors is awful... So I had these doctors, I felt good with. I've been kind of shopping adult doctors for over a year now trying to make sure I find good fits. I was with this cardiologist and she's automatically assuming, I have these specific goals. She's saying, 'you know if you just exercise more, you could go off your meds.' It's kind of like well, I have a very busy life and I don't want to commit to exercising two hours a day to go off meds that have no side effects and no long term side effects. Also, I was exercising two hours a day and I never was able to go off the meds. But there was never any point where she asked like, 'Do you want to go off your meds? Is that a goal you have in the future?' It was just like meds are always bad, you should be off them as soon as possible. Your body should you should be pushing yourself as hard as you can to have like a normative body. First of all, she never asked whether I tried intense exercise, she never asked all of these things. So I think understanding that people have different desires for what they want their bodies to do and... really being patient focused in terms of goals and the language they used to describe themselves, instead of just saying coming in and being like I'm managing your problems in five minutes. That would make a huge difference.
5. What would you consider to be an ideal healthcare experience for you?
I think I've had fairly good ones… There's so many truly awful and horrific things that have happened that when I have someone that I feel like is listening to me, supportive of me, like non judgmental, and actually has the medical knowledge to properly do things for me, I consider that like such a win, and I leave very happy… I saw a doctor for the first time on Friday. There were a lot of amazing things about it. She took a lot of time with me. I think that's you know a general issue with doctors is the way they have to move so quickly… So she really took time to listen to me to form kind of a personal connection with me. I think a situation also where like, there's not an expectation that we're all going to be the same. So for instance with the rigorous exercise thing, my sister has a similar health condition to me, pretty much the same thing. For her exercising two hours a day is absolutely a part of how she feels good every day, it's something she enjoys, she doesn't see it as a burden. For me, it was always like, I could be doing other things, and this doesn't make me feel good. So an understanding of each person as an individual in that situation, along with quality listening, and then like, probably language changes. But I think there's a fear when you walk into a doctor's office, that there's this, you know, concept of compliance, right? The idea that if you're seen as not behaving in the way a doctor would want you to, they can withhold meds… I've heard of seriously, chronically ill people who get, essentially, their legal rights taken away, because… the doctor can essentially say, like, we're filing for like guardianship over you… I had a friend who’s doctors weren't able to help with extreme GI issues and they tried to put her in a psych ward. It's like, just because you can't help her doesn't mean this is a psychiatric problem, right? Most the vast majority of experiences, I don't think like the doctor seeing you is thinking about this... Sometimes I like comparing it to police violence. Maybe the majority of interactions people have, especially disabled people, with doctors are actually not bad, but because like there's these horrific abuses of power, like any time I'm in that situation, because I have experienced my own personal moments where doctors have abuse their power, I'm worried about what that next thing is going to say. I'm trying to consciously monitor the way I relate to this person, because I perceive them to have so much more power than me, because I need these meds, I need these doctor's notes, and I need all these things. So I do think also, like some type of trauma-informed training, I think the fact that med school doesn't really ever sit down and say, ‘Okay, what does racism in medical institutions look like? What does ableism in medical institutions look like?’ It is such a huge problem. And so, you know, if doctors came in assuming I had had medical trauma instead of like, assuming that this was like a non stressful interaction for me, I think that would also make a difference.
6. How have your experiences been with resources on campus such as getting accommodations going to one store or even student health?
I think the accommodations process actually is working very well these days... Since they brought Mace in who's like the new... accommodations coordinator, I think it's gone really smooth. I don't even have to go in person... The first couple years, they kept asking for new notes and I was like, this is genetic I'm not gonna change... I think accommodations in general are really good, it's just like, that's a bare minimum kind of support. Then beyond that I think... that the health center and Monsour are underfunded... At student health I have met really, really qualified people... I'm pretty much using them as urgent care... I think it would make a difference for me if there wasn't such a huge turnover there... Especially by the time you're a sophomore or junior and you've been in two or three times a year... [you] like this person, especially if you're dealing with medical trauma, then you can feel safe asking for the specific nurse practitioner or doctor. That would make a huge difference... Yeah, I don't know if you saw it, there was this article of horror stories of student experiences in student health centers in the Washington Post, like nine months ago... Definitely nothing at that level at Pomona, but it kind of shows like that this is kind of a systemic problem across universities... Literally people who died because they didn't get the care they needed at student health, like why not?