Grid-Locked by Gratitude

“Stop saying thank you!” mused my friend after I thanked her the tenth time for pushing me in a wheelchair around the Denver Botanic Gardens. At the time, I did not have a chair of my own and felt self conscious about needing assistance, despite having lived with disability for twenty years. Where did that embarrassment come from? Disability Justice leader Leah Lakshmi Peipzna- Samarasinha points out in Care Work: Dreaming Disability Justice that it comes from a long history of disabled people being put in danger by abled institutions and inaccessibility. The idea that we are just lucky to be alive contextualizes every interaction with abled society. If we are conditioned to being shut out, forced to acclimate to an inaccessible world, then the bare minimum of acceptance or accessibility feels like a gift. Or rather, I was taught to be overly grateful for being “accommodated” because to the abled people providing or advocating for the accommodations, the accommodations are “extra.” Abled society does not seem to understand that the meeting of basic access needs is not “extra” because disabled people do not start on a level playing field- by definition, disabled people have needs in order to exist at a similar level of comfort and, dare I say, productivity, as our abled counter parts. In the most basic sense, I could not have gone to the botanic gardens like all the people walking around had my friend not been pushing me, but a cultural history of exclusion indoctrinated me that this was a special allowance.

So-called “gratitude” has long been a tactic to maintain the oppression of Sick and disabled people. Because ableism boils down to such basic rights as one’s ability to enter and use physical space, the “fight” of disabled people has historically been to participate in the public sphere in the most basic way. As a result, our “wins” are things like the ability to use a bathroom, ride a bus, understand a lecture, attend a movie. If and when we strive for more than the bare minimum, we are called ungrateful. “You got your bathroom, so why are you still whining.” Striving for actual disabled wellness- Big Disabled Dreams- are radical because our basic needs are already considered Special. This is reflected in every part of disability services: Special Education, Special Services, even the existence of the over zealous ‘Special Needs Mom’ says that we should be aware of just how extenuating parenting us is. An entire identity is crafted out of caring for our many special, special needs. God forbid we ever forget we are burdensome to our families. Well, ‘we’ is figurative here- my parents knew better than to bring that language into our house.

While I typically refrain from speaking in sweeping statements about the disabled community, vast and uncategorizable as it is, I’m confident every disabled person has been called or thought to be ungrateful by an abled person at one point or another. In the Obama produced Netflix documentary Crip Camp, a young Judy Heummann breaks down in tears while addressing a crowd of community members after finally getting section 504 enforced. “I’m just tired of being grateful to use a toilet,” she says. A similar example that I have is in achieving fire safety for residential students with disabilities at Purchase College. After several months of intense protesting and policy work, administrators tried to buy me out by building me an accessible dorm that allowed me to evacuate independently. Even though my personal situation was “solved,” the actual policy in place did nothing actively to keep students safe, and it was clear I was being placated. As I continued to push, one administrator said I would “never be happy” and should “just be grateful” for the minimal changes I had seen. In one meeting, when I pushed for a specific policy change, an administrator said that “nothing is perfect.” I responded that this wasn’t dining hall food- that if one thing should be letter perfect, it is fire safety. They did not like that I held an expectation. 

When I would come in contact with a problem at my school or in my program after my situation was somewhat resolved, I’d think “I should just be grateful I’m safe, can I really complain if my life isn’t in danger?” Yes, yes I fucking can. Both in my situation in college and Judy’s position with the enforcement of 504, the concept of gratitude is weaponized to halt advocacy and grid lock disabled people in our own oppression. To the oppressor “gratitude” means being content with what you have. When really, being thankful for progress and yearning for more are not mutually exclusive. I can appreciate my ability to get in (and out) of a building, and still want and need more out of life. 

Sometimes, the expectation of gratitude is on a macro level like that of Section 504 and fire safety policy, but it’s harm snakes its way into the mundane. Once, I made the mistake of bringing up personal care assistance to my parents- how lots of people in my newfound disability community utilized personal care attendants and were living full lives. What might it be like, I wondered, if I had personal care help? “But you can live independently.” The conversation quickly devolved into how I was ungrateful for the independent living skills my parents had imparted. Of course I am appreciative I can live independently- it is a privilege I do not take for granted. My interest in personal care help was about going beyond the bare minimum- that maybe life could be enriched if I wasn’t exhausted by spending an entire day doing my laundry and putting it away. My yearning to make that experience better does not diminish my gratitude to be able to do it for myself. Because if being disabled has taught me anything, it’s that being too prideful can and will hurt you. As a disabled adult, trying to keep up with abled standards and making sure everyone knows I’m Happy To Be Here was literally exhausting me. But as soon as my (gr)attitude was called into question, that history came to the surface. I did not bring it up again.

Last Spring, I was placed with two new abled roommates randomly. They seemed nice and communicated directly, so I told them about my ability status within sharing space right away. I explained I couldn’t clean a bathroom, but would hire another student to come in to do it. They insisted that was unnecessary and they’d clean it. I confirmed that a few times before thanking them and then told them to tell me if that changed, as I’d be okay to bring someone in. They said it wouldn’t be a problem, and maintained our bathroom without comment for the rest of the semester. Then, on my way leaving campus at the end of the semester, I received a volatile text in the roommate group chat clearly not meant for my eyes, detailing how I was ‘lazy’ etcetera for “never cleaning.” I let the ableist rant unfold a bit before confronting the girl individually, who quickly backpedaled that her complaint “had nothing to do with my disability,” but they were put off by the task, as I “seemed ungrateful” because I didn’t express my thanks after the initial conversation. There’s that word again. I explained I was not going to grovel in my own home. We had an agreement, and I left communication open for that agreement to change. For the first time, I thought to myself on that bus with tears in my eyes, maybe I am ungrateful. I’m ungrateful for all the presumptuous young abled people who take their ability for granted; I’m ungrateful for being made to feel lesser than; ungrateful that I’m expected to grovel to take up space; ungrateful that my personal expectations are so drastically lowered because I’ve internalized that to strive for more means I’m ungrateful.

The lowering of personal expectations is the unfortunate fall out of the gratitude complex that grid locks so many people with disabilities. I’ve refrained from initiating with people I’m interested in time and time again because I “should just be happy they want to be my friend.” I’ve bitten my tongue when I have a valid reason to dissent a popular opinion because I “should just be grateful to be included” in the discussion. I’ve accepted a lack of elevators because “at least I can climb stairs when I have too.” I’ve suffered in silence when my chronic fatigue and chronic pain are flaring around abled people because how dare I poop on the party I was so graciously invited too. I’ve suffered in silence when my chronic fatigue and chronic pain are flaring around disabled people because a little voice in my head says I don’t have it as bad, that to complain about my symptoms when bodily discomforts are the norm of the group, is to ignore how capable and privileged I am on the spectrum of physical disability.

As this long piece of writing demonstrates, undoing the gratitude complex is deliberate and challenging work. Choosing not to grovel at the feet of those roommates and viewing our conversation as an agreement was a big step in the right direction for me. Writing this and naming everything is another. But the most important antidote to the belief that disabled people should just be content with the (structurally oppressive) status quo, is to keep dreaming big: to craft an alternative in our minds eye that goes beyond the bare minimum, a world where our gratitude is never questioned because it is understood to be inherent; to name our wants with reckless abandon and then take them as seriously as we take our Very Special Needs. I want so many things out of this life, and I am simultaneously so incredibly grateful for everything I have. But instead of proving that to you, I’m going to force myself to keep dreaming, do what I can to leave my shame behind, and go get it all.



Today, This Is Where She Stands.


Sonya