I'm Not the "Perfect" Disability Activist You Wanted

Living with out-of-remission Crohn’s Disease is like constantly having the stomach flu.
09/12/2017 09:24 pm ET Updated Sep 14, 2017
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About three years ago, I found the disability advocacy community. As someone who identifies as both chronically ill and disabled, it has always been difficult to find where I fit in society. When I learned about the independent living movement and disability activism, I was thrilled. Finally, I found a community that embraced my differences not as something to pity or put on a pedestal, but as part of who I am.

But lately, the community that I found to be a home just a few years ago has felt increasingly unwelcoming to my existence as a person who is still learning, and a person with a chronic illness. In the past few months, I have had experiences that have made me uncomfortable with expressing my opinions or even talking about my existence with chronic illness. I have felt a pressure within the disability community to think, act and be a certain way that fits the mold of a “perfect activist.”

I have felt the pressure for perfect disability activism in two ways: the expectation to always say and do the right thing, and the pressure to be the right “type” of disabled person. Fitting this mold leaves little room for differences, and no room for mistakes, and unfortunately, I haven’t been able to fit the criteria.

Saying the Right Thing

The disability advocacy community is a complex place. With a massive array of different conditions and labels under the umbrella of disability, there are differences in how subsets of the disability community, and individuals themselves, feel about many different issues, ranging from language used about their condition to policy interests and accommodation needs. Because of this diversity, it is very difficult to know whether you’re saying or doing the right thing. Naturally, people have differences in opinions on certain issues, or they make mistakes when not being informed about another group’s preferences. This calls for activists to step back, listen, and learn.

However, lately when someone makes a mistake, or voices an opinion that is opposed by others, the backlash has been swift and fierce. I have been at the receiving end of this criticism, as have my friends, and other activists. Every single activist I have talked to, including ones who have been on the giving end of this criticism, have felt unsafe in voicing differences in opinions or speaking up for fear of being attacked.

I will admit that some of the time, a stern response is appropriate and necessary, especially for people who have been told time and time again that something they say or do is extremely discriminatory or insulting to another group, but instead of stepping back and listening, they double down and defend themselves. However, use of more harsh and less forgiving “callout methods” have been used not only on these repeat offenders, but also on people who may simply not know that what they’re doing is wrong. It has also been used for simple differences of opinion. As someone with a chronic illness, my experiences and perspectives are different than those of people with other types of disabilities. Instead of recognizing that my opinions are rooted in these differences, some people conclude that I have “the wrong opinion” and attack it.

Nearly every single disability activist I have talked to has expressed discomfort with sharing their opinions or differences due to these swift and severe callouts. And unfortunately, many of us who have felt the sting of these unforgiving responses have also perpetuated callouts against others. I know I may have been to harsh with people who simply have a different opinion or may not know that what they said is wrong, and it’s something I’m actively trying to catch and correct.

Because of this intensity, the climate within the disability community has felt like there’s no room to make mistakes. It feels like expressing a thought comes with the extreme risk of anxiety-inducing backlash, and nobody is safe. Some of us have decided to try to keep our mouths shut and heads down so that we don’t say something wrong. Making a mistake feels like failing as an activist.

The “Right” Kind of Disabled

The disability community says that it rejects the trope of the supercrip. If you aren’t familiar with this term, it refers to the image of a disabled person who valiantly “overcomes” their disability to be as successful as non-disabled people. The problems with this trope could fill a separate article, but the disability community says that it rejects the supercrip ideal because it isn’t representative of us. We aren’t superheroes, we’re just people.

However, while our community says it rejects the idea of supercrips, I have experienced much evidence to the contrary in the past few months. Our movement values the work of medically healthy disabled people, but if you’re not medically healthy, you’re an annoyance, a complicating factor, or even a shame.

My Crohn’s Disease has been out of remission for over a year (*see footnote). In the past six months, I have been told that my inability to participate in physical acts of protests is insulting to other disability activists, even though one day of protesting could be enough to send me to the emergency room. I have been told that my desire for a cure for my chronic, painful, and life-threatening medical condition is wrong and promotes violent rhetoric towards other disabled people who don’t want cures. I have been told that the impact of legislation on my ability to access healthcare is not as important because I’m not visibly disabled. I have been told to hide the fact that I need disability accommodations that other disability activists don’t need, to be ashamed of my own medical needs. I have been delivered the message my physical and mental inability to be in the center of extreme criticism and controversy essentially doesn’t make me a devoted activist, even though my condition is stress-triggered and has real, painful impacts on both my Crohn’s Disease and my anxiety.

These situations have combined to send me the message that I’m not the right type of disabled person for the disability community because I can’t meet these specific standards. I can’t medically persist through unexpected conditions and I have to keep my health in mind first. I am still welcome here, but must downplay my differences so I don’t attract the disdain of other activists and so I don’t inconvenience them. The disability movement talks about accepting all types of disabilities and differences, but I feel like I have no choice but to hide my true self.

Why I’m Speaking Out Now

I have been afraid of speaking up against what I have experienced, in terms of both my ideological and physical differences from other activists. I have kept quiet as fellow activists, knowingly or not, insulted me for not fitting their standards. In a community that takes pride in its diversity, the fact that differences from the “perfect disability activist” mold are demonized is heartbreaking. I have kept quiet about this to protect myself, but since these problems only seem to be growing, it’s time to break the silence around these expectations.

All I have ever wanted to do is the right thing, and to make a positive impact through my work. Now more than ever, it feels like the right thing to do should be clear, but now more than ever, I’m afraid to speak up and engage with the disability community. I’m afraid of expressing my opinion on things that affect me as a person with a chronic illness because my differences could draw backlash and harsh callouts that exacerbate not only my anxiety, but my stress-reactive Crohn’s Disease. I’ve tried to shrink my presence and step back, but drama still ensues.

I’m tired, burnt out and constantly afraid that my differences will cause unintended consequences. It’s clear that I can’t fit the mold of the perfect disability activist that seems to be expected right now, but the silly thing is that every single activist I’ve talked to has felt this same exact pressure, and felt that they, too, cannot meet this impossible goal. They have felt attacked for mistakes or differences to the point of being afraid of speaking up.

I’m going to make mistakes. I’m going to do my best to learn from those mistakes. I can’t always do what people expect me to do due to the limits of my condition, but I’ll still try my best, even if my “best” is devalued by those who don’t understand how my Crohn’s Disease limits me. I’m not going to be your perfect activist, because it’s impossible. If perfection is what you’re expecting, you’re setting all of us up for failure by fixating on complex and unnecessary infighting, unconsciously (and sometimes consciously) preferring certain “types” types of disabled people over others, and creating a hostile environment for newcomers to our community and the next generation of activists.

The disability community needs solidarity in these difficult times. But if solidarity means fitting the mold of the perfect activist, being the “right type of disabled person” who always says the right thing at the right time, I’m not your person. But I’ll still be here, listening, learning, trying my best to do the right thing, and waiting for the day when it’s once again safe to be myself.

*In an effort to fit in the disability community and to spare myself the shame of my own disease, I have not spoken bluntly about what it’s like to live with my specific chronic illnesses. Living with out-of-remission Crohn’s Disease is like spending every moment of your day with the stomach flu. It starts well before I’m supposed to wake up, in my dreams, which are suddenly interrupted by pain and spasms. As I come out of my sleepy fog, I’m up and running to the bathroom at 2 a.m., 4 a.m. and 6 a.m., doubled over in pain.

Before I can truly “wake up” in the morning, I have an alarm clock set for an hour prior so I can take pain medications and anti-nausea medications, which sometimes don’t even work.

Through the day, bouts of pain, nausea and fatigue hit at random times, interrupting my concentration and sometimes forcing me to work twice as hard to be as effective as I would’ve been in remission. Typing causes joint pain in my hands and fingers from arthritis related to Crohn’s.

At this point, I’ve been reduced to a mostly liquid diet of Ensure, with occasional bowls of cereal, or yogurt, or applesauce so that I can try to make it through the day without serious pain and bathroom symptoms.

Ive lost 40 pounds in just a few months from malnutrition. Meanwhile, I’m juggling doctors who are debating whether I need surgery, to try a risky clinical trial, or if I need to go on what they consider my “last option:” a medication that nearly killed me from complications only a few years ago.

Along with the complexity of Crohn’s Disease, I also have anxiety that triggers panic attacks, chronic hip pain due to a prior bone infection, and some less severe, but still irritating, minor conditions. Most people don’t see these problems and assume that because I look and sound fine, I must be fine, but this is a daily, painful, exhausting, and heartbreaking struggle for me.

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