With multiple perspectives on disability-related topics, who are the “right" people to talk to?
It seems fitting to start this blog with a post that intersects my life as a disabled person, my life as an advocate for disabled people, and my life as a PhD researcher in Disability Studies. When examining my positionality and reflexivity, I often reflect on this trifecta of identities, and the ways that they coincide and clash. Today’s topic is one such way.
This past week, when meeting with the other researchers in my Disability Studies cohort, a tangled web of fantastic discussions emerged, each point tying into the next. Disabled and nondisabled researchers respectfully discussed their differing positions on heavy topics. I was both overjoyed and overwhelmed by this amalgamation of voices: overjoyed by the important points that were discussed, overwhelmed by the need to mentally keep track of said points, along with who discussed them and why they were being discussed. It was towards the end of this meeting, when my energy was spiraling downwards, that a question prompted a surge of adrenaline:
“Who are the right people to talk to?”
The question was presented from a research-lens. Who are the right people to talk to about a specific disability-related topic, in order to generate rich data about said topic? My first instinct is: disabled people. “Nothing about us without us” is still chanted by many disabled people, including myself, in order to stress the importance of listening to disabled people’s voices. Historically, disabled people have been omitted from research and discussions on disability-related topics. In order to right this wrong, research on disabled people must be conducted with disabled people, centering disabled people’s voices. Nothing about us without us.
We now have an answer to the question. “Who are the right people to talk to?” Disabled people.
Except, like life, it’s complicated...
Which disabled people?
Who are the right disabled people to talk to?
As the original question was asked after different disabled people had offered different viewpoints on a topic, I can only assume that the underlying inquiry was something along the lines of: “Who do we talk to, in order to get the real answer?” Which disabled people will tell us the Truth about XYZ?
At the trifecta of my identities as a disabled person/researcher/advocate is my relativist ontology: my core belief that everything is relative. There is no Truth. Specifically, there is no one disabled person who can tell you the Truth about an issue, wrapped up like a tin of shortbread, for you to easily digest. Just as every disabled person is unique, every perspective will be unique. If I interview fifteen disabled people for my PhD, I expect to have fifteen different transcripts. These transcripts may have many similarities, but they will also have unique aspects from each individual disabled person. Disabled people are not a homogenous group; intersectionality ensures that no two disabled people will have the same exact answers.
I recently wrote these notes for my participation on a panel: The Future of Disability Through The Intersections:
The hardest part about being a disabled advocate, a disabled researcher, and a disabled person, in general---especially if you’ve grown up in a small rural town---is that you have this identity, this experience, this voice...and some days, you might be the only person in a room who is disabled, the only person talking about disability [disability studies, disabling barriers, the rights of disabled people, etc.] Some days, it’s just you and your voice. Other days, it’s you and one billion voices.
On the days when you’re the only person in the room, you don’t just want your voice to be heard, you want to scream. You want everyone to listen to what you’re saying.
On the days when you realize that there are millions of people who are also disabled, millions of people with their own unique identities and experiences, you realize that it’s not enough to just start screaming. You’re going to be screaming things that don’t affect everyone; that screaming could even hurt someone.
Ultimately, the hardest part of advocacy is recognizing that, because of the intersectionality of identities, lived experiences, and individual ideas, you can’t be the voice of everyone. Instead, you should be their microphone, the vessel through which other voices are heard.
Through these notes, I highlight a paradox, which leads to uncomfortable question: ‘to what extent should my voice be heard?’ This question is one that I am always considering, when speaking/writing. I am someone who has remained silent, when I should have screamed, and I am someone who has screamed, when I should have remained silent. Moreover, I am someone who has gotten it “wrong”.
The more I grow in my identity as this trifecta of a disabled person/scholar/advocate, the more I recognize the harm of flippantly passionate posts, such as: “Disabled people want/need XYZ” or “This is offensive to disabled people” or the dangerous: “This is NOT offensive to disabled people”. Due to the intersectionality of identities, experiences, and ideas, these posts can never apply to every disabled person. This is also why, when researching disabled people, you cannot consolidate an amalgamation of disabled people's voices down to one Truth. It has taken me a long time to learn that being disabled does not give you the ability to speak on behalf of all disabled people. Every disabled person has different identities, lived experiences, and ideas; therefore, every disabled person has a unique voice.
Furthermore, when the topics of intersecting disabling barriers are being discussed, it is important to find people with those intersecting identities, instead of ‘settling’ for any disabled person. i/e: Though I am disabled, I am also a white cis woman. As such, I should not be the loudest person speaking on the issues of police brutality against nonwhite disabled individuals, nor should I be the loudest person speaking on the stigmas that disabled transgender people face in medical practices, etc. My voice should still be in the conversation; I should just be in a supporting role, rather than center-stage. In this sense, there is a hierarchy of the “right” people; at the very least, there are subjective instances when certain disabled people are more qualified to speak on a topic.
Notably, just as posts with all-encompassing statements can be incorrect and harmful, so too can the underlying assumption: ‘All disabled people must think XYZ.’ Not only does this assumption ignore the aforementioned intersectional differences between disabled people, the concept of a uniformed consensus can also contribute to feelings of imposter syndrome, whenever one’s ideas are perceived to differ from the ‘norm’. i/e: ‘All disabled people clearly think XYZ, but I think ABC, so I must be a bad advocate/a bad disabled person/the wrong disabled person to talk to’. This is what inspired the title of this article: The “Right” Cripple.
What does it mean to be the "right” cripple? In less crass terms, what does it mean to be the “right” advocate? What does it mean when you’re a disabled person, trying to be an advocate, but you have opinions that may differ from the perceived norm? Moreover, when we’re only guaranteed so many years on this spinning rock, should we even spend large chunks of our time worrying about this? The answer to the last question is that anxiety will ensure that we have no choice, that we must keep contemplating and discussing these questions. Furthermore, we must constantly be reflecting on our positionality, in order to ensure that we do not dismiss the positionalities and voices of others.
Thus, the answer to the question “Who are the right people to talk to?” is complicated. In my opinion, there is no such thing as the “right” cripple. There is no “right” or “wrong” way to be disabled, because everyone has different experiences and perspectives. Therefore, there is no one disabled person who is going to have all of the “right” answers, for right answers are subjective. Instead, I would argue, perhaps controversially, that there is a “right” and “wrong” volume, that we all must continuously consider.
One cannot keep their voice silent. Yet, one cannot speak so loudly that they talk over someone else. In the end, being a disabled advocate (/researcher/person) means constantly reflecting on when to speak and when to hand the microphone over.
I certainly picked a heavy topic to start this blog. The more I wrote, the more I realized just how complicated the topic was. With each sentence, I tried to make sense of my own positionality, explaining where I metaphorically stand. However, as a relativist, I concede that I don’t have all of the answers...
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