Neurodiversity, Intersectionality & Why We Need HCBS for Eating Disorders

Author: Noor Pervez (he/him/his)

Introduction

The first weight-loss plan I was ever placed on began at age 7. I have a sharp memory of my mother taking me to the drug store to purchase an ice cream cone, and telling me it would be the last one I had for a very long time. It felt like a threat, and it was. Earlier that same day, I distinctly remember my mother telling me that the doctor said I was too fat, and would get diabetes if my diet didn’t improve. It was the first time I’d ever heard that word - pre-diabetes - and I would hear it annually for the rest of my life. Before I’d even hit double digits, this is what my life became - an ongoing treadmill of cutting sugar, weight loss, and never leaving what was considered “borderline unhealthy”.

This progressed to what I’ve now been diagnosed with, as a lifelong disability - Avoidant Restrictive Food Intake Disorder (ARFID) and anorexia. Everyone around me seemed determined to tell me exactly what my life was going to be like, from my grades and college all the way up to what I looked like and who I would marry one day. I needed control. Eating was one of the only things I had any say over. My case is one that was allowed to thrive, in overwhelming silence. My parents and doctors praised how little I ate, and complimented my weight loss, all while ignoring or downplaying the other signs I was displaying of physical and mental health issues. This went on, completely uninterrupted, until I was 18. I spent nearly a decade encouraged to suffer by nearly everyone in my world.

Asking for Help

The first attempt I made at getting help was my first year of college. I started seeing a counselor on campus. She was visibly overwhelmed by the amount of information I had to share with her. I’d grown up in a small town in north Texas, crushing myself under the weight of trying to be someone I wasn’t. I was so willing to be the perfect daughter for my parents that I’d nearly destroyed all of what I actually cared about. When I started to lean in to the parts of who I was that had obvious community - particularly queer and trans people - I had finally started swaying in the direction of making choices for myself. Going to college (and going to counseling) was one of them. She wanted to support me, but it was apparent that she did not know how to handle anorexia. She referred me to the on campus center for students in recovery, a support center that centered students entering sobriety from substance use disorders and eating disorders.

The CSR was led by someone whose skill set was squarely in substance use disorders, but not eating disorders. He became my point person. I was there every week, tracking my food intake, and explaining my physical challenges with cooking. It wasn’t doing much, but everything ground to a halt when I heard him say, “Nobody gains weight off of fruits and nuts. You’re doing something wrong.”

Advocacy > Help

I left. And for that whole year, I stopped trying to get better. Instead, I centered my efforts squarely on drowning myself in school and policy efforts. I finished proposals for new LGBT+ affirming policies on campus. I filed reports against counselors that intentionally avoided giving trans students hormone prescription letters after meeting WPATH criteria. And I wrote a formal complaint about the center for students in recovery. I followed up, every month, and explained exactly the ongoing impact of the way I was treated, as well as other disabled students in my LGBT groups who had received similar treatment. Within a year, they hired someone new, but the damage was done. I wasn’t going to go back.

This is what life is, for multiply marginalized people seeking recovery from eating disorders. This is what my life always remains. As someone trans, low income, at the time underinsured, queer, fat and a person of color, I literally grew up with the resource deficit. There weren’t resources about eating disorders, or the fact that fat people can have them, available in my parents’ language, and there weren’t resources available to people who had little to no income at all that wouldn’t bankrupt us. To this day, I’ve literally seen one other image of a south asian person in a media campaign around eating disorders - and it was in an article written by one of us. In my 26 years alive, that has not changed. Even when I hit a point where I could seek help, the options I had as a college student in the south outside of hospitalization (which, as a fat person, I did not qualify for) were almost nonexistent.

Advocate, or Die.

My whole life is one big fight. When you live at the intersections of many identities that our society was not built to keep, the options are to advocate or die. As a college student, I found energy in constantly working towards change. As an officer for an on-campus queer advocacy group, I drafted a policy proposal for an LGBT center and more resources, and while we did not get a physical space we got every dollar and other resource asked for. We built off that momentum to get single-stall gender neutral restrooms in all current buildings that had single-stalls, and in all future buildings on campus. That same energy went towards pushing for better eating disorder resources on campus, doing training and having conversations with counseling and new CSR staff to talk about what needed to be improved. Thing is, while I was doing that, I also was not getting help - because they literally did not know how to do that yet. I didn’t have a choice. Everyone around me was struggling, too, and I didn’t think it was fair to leave them out to dry. Tons of trans folks on my campus had eating disorders, and many people of color in general as well. 

We kept each other alive. My queer group members frequently cooked or meal prepped for me for the week, or would check on me to make sure I’d eaten. When I didn’t, they took me to their apartments to have some of what they’d cooked. It was that way about everything. Suicidal? Congrats, you’re staying on one of our couches until you’re out of crisis. Lost your job? We’re pooling our non-existent incomes to make sure you can eat until you’re back on your feet. This was how being a queer at a southern campus worked. We all were struggling, so we all were helping. We wouldn’t make it otherwise.

Eating Disorder Treatment Does Not Recognize Intersectionality

If that sounds like a dramatic systems failure, it’s because it is. That was the case a decade ago, and it is the case right now. Eating disorder standards of care are based largely around returning cis, white women to standards of productivity - being able to parent, or go to work or school. It focuses on weight as a standard of improvement or failure. That sounds familiar, doesn’t it? Eating disorder professionals of color, and trans professionals in the field, have been fighting to try and make room for all of us in a system that fundamentally did not recognize that they needed to serve everyone. 

Intersectionality, defined by Kimberlé Crenshaw as “a metaphor for understanding the ways that multiple forms of inequality or disadvantage compound themselves, and create obstacles that are not understood by conventional ways of thinking” is critical here. Basically: if you don’t look at the system you’re building as something that can and will have people who hold more than one marginalized identity, there’s going to be problems you didn’t expect. The eating disorder treatment system did not expect to have to serve us. And they’re struggling to cram us into something that barely includes us to this day.

The whole mentality that eating disorders don’t discriminate is a lie. This is not just for the obvious reason - that treatment is not available or feasible for a huge amount of people, particularly poor and working class people - but also because eating disorders do in fact discriminate. There are populations likelier to have eating disorders specifically because society is creating that same lack of control over their lives that I had, when I was younger. Low income? Trans, and want to have physical transition tools you can’t afford? Disabled, and don’t have control over what aides enter your home every day because of the one agency in your town that does what you need? Eating disorders thrive off of the idea that you have no real choices. So, you take the one you can get, even if it hurts you. It’s trying to serve an unmet need.

Our Recovery System Doesn’t Work For Everyone.

While we are talking about the system: it isn’t tenable for most folks. For someone working in food service, for example, a sudden months long hospital stay for treatment could mean losing their job, along with any minimal health benefits they have. Outpatient hospital care faces largely the same problem - it isn’t practical for most people to drive or take public transit in for breakfast, back to work, then lunch, back to work, and then dinner (and back home). There wouldn’t be enough hours left to actually do work. At which point, we return to the original issue: time off, which your average person doesn’t have enough of. In areas with strong paid medical leave, you might be able to get some treatment in, but that leaves you vulnerable if you or a family member falls ill again before the next year. For that matter, even if you do manage to pull the time off to go to the hospital or treatment center: there are barriers to access there as well. 

Many of these programs are in facilities that are not physically accessible for wheel or powerchair users, and most of them do not have the kind of day to day supports necessary to support a medically complex person for a week, let alone a month (and not every facility is flexible and competent enough to make sure people have time to seek that care elsewhere during treatment). For disabled folks in particular, there’s a long history of fear of institutions. This is because there’s a long history of, essentially, disabled people being put away in a separate facility, separated from society, where we can be forgotten. These settings lead to poor care, abuse, injury and death. While hospitals are not designed to serve the same purpose, the rates of discrimination and abuse against disabled people in them are fairly similar. I’ve yet to see data about this in recovery centers in any centralized way, but these issues are likely to persist. It’s also worth noting that access to non-white cultural foods, correctly gendering people, giving people frequent access to their friends and family and the like are all frequently cited issues in these programs.

Home- And Community-Based Services for Eating Disorders

There’s already an alternative model for what better care for eating disorder patients could look like. It comes from the disability community. HCBS, also known as home- and community-based services, are supports that allow disabled people to live our lives freely in the community instead of in an institution. Examples of HCBS might include help with preparing meals, help going to doctor’s appointments, help with preparing medication for the week, and/or helping people get dressed and use the restroom. The fundamental idea here is that putting these services in home puts the control back towards disabled people, as opposed to our care teams.

In the case of eating disorder care, I see this looking like clients communicating with a counselor regularly either in home or via telehealth (or in person at their office if that’s more accessible), and having them and a registered dietician work in home. This allows them to see in real time what challenges people might have when trying to cook or eat food, and to talk them through options. For example, if it’s an issue with muscle tone preventing chopping food, they could help them find where to get pre chopped vegetables, and to get access to OT if it’s desired, to try to build muscle tone for that purpose. If the problem is emotional, then they can be in the moment and process with the client. Consistency and practicing in the actual environment you’ve got with the tools you actually have is part of figuring out cooking and eating, both emotionally and physically. We do nobody any favors by trying to make people guess through it alone. This might seem radical, to people outside the disability community, but think of it this way: the changes you’ve asked us to make to our lives (namely potentially risking our livelihoods and the insurance that keeps us able to see you, for treatment) is also pretty radical. Our system is missing massive amounts of people it’s supposed to serve. It’s going to take some big changes to meet that need.

Advocate. Don’t Let Us Die.

Nothing can become more inclusive until treatment and society does. Providers, my statement to you is this: the system you’re working under excludes most of the people who most need your help. If you’re not working to change that, you’re effectively accepting it. You can advocate for these systems to change, or you can continue leaving us to die. Inaction does not excuse you from impact.

Author: Noor Pervez (he/him/his)

About Noor: Noor is a student organizer turned disability and LGBT+ educator, community organizer, public speaker and internet researcher. He focuses on the intersections of disability, race, gender identity, sexuality and religion. Noor works for ASAN as Community Engagement Manager, and is on the board as an accessibility leader at Masjid al Rabia, a queer, trans, and woman-centered and led mosque. He is an AAPD Paul G. Hearne Emerging Leader Award recipient, and is using the funding to begin the process of making an Easy Read translation of the Holy Qu’ran. This project is designed to make learning about Islam accessible for people with intelletual and developmental disabilities. He has bylines at Rooted in Rights and the Disability Visibility Project blog, and can frequently be found posting about his beagle, KIBBY, on Twitter at @SnoringDoggo
Email: noorpervez17@gmail.com
Instagram: @ttnobi