It’s interesting how humans love categorizing and labeling things. Having things in common can create bonds and encourage empathy. They make people feel not alone, and helps them explain themselves to others in an easy way.
However, this phenomenon is at odds with our desires to be special snowflakes, where we see diversity and acceptance of differences as what creates beauty in the world. This side hates labels and categorizing, because those things are seen as limitations to ourselves and limiting to our ability to have a deeper understanding of varied human experience.
It’s also important to note that for some people, the label makes them feel like a special snowflake. As we get older, we keep asking ourselves, “What is normal?” We sort of conclude that normal doesn’t exist, but we still use the word to generalize to large populations, like its the average or median. It also becomes questionable on what typicality is. Is there a typical? Is our current idea of what is typical the actual typical? Or does society have a standard that we consider to be the typical, but is actually nowhere close?
People who are anti-label are also inclined to hate the idea of normal and typical. While it isn’t good to compare yourself to others for everything (as I tend to do), does that mean we shouldn’t compare on certain things? Sometimes it’s that comparison that makes us realize something is up and we need help.
Labels can be limitations to some, and empowerment to others. It even goes so far sometimes that some individuals feel empowerment from limiting themselves to their label, and others feel limited because they feel like they are being told that the label is the only way for them to feel empowered, which is ultimately limiting how they get to feel empowered.
We should not dictate how people should feel when it comes to their relationship with labels. We need to move in a direction that isn’t label oriented so that people who don’t like or identify with certain labels can still get the help they need. This means the ultimate goal of physicians and providers should not be to reach a diagnosis. It is especially important to at least make the goal not be to find a diagnosis as soon as possible. This problem is the result of the fact that we are living in a society that requires a label to access certain kinds of help or acceptance.
Labels don’t usually explain everything about an individual, but those individuals may still identify with the label because it allows them to move forward and get help or easily explain themselves to others because that is how the current system works. Others do not want to label themselves with something they don’t think perfectly explains them, or they don’t want the stigma that may come with a particular label, or they don’t think the label fits them. This may be because of their personal outlook on life, which also may have been influenced by the part of society that dislikes labels. That is a perfectly valid understanding as well. It’s also important to understand how different parts of our society and culture(s) reflect and influence our personal understanding of the world.
It seems that the “mainstream” disability activism is very pro-label. It also feels funny to call any disability activism “mainstream” because I think it’s only been very recent that disability awareness has become talked about. But from my experience with YLF (California Youth Leadership Forum for Students with Disabilities), there was a push for disability pride. The idea being that we should be proud of being disabled, of having a disability, of having this varied human experience so that we can diversify the world, of creating an identity as a disabled person. Disability awareness has an internal debate between person-first language and identity-first language. Historically, disabilities have been pitied, and society has tried to erase disabled people. This is why having people being okay with being disabled is kind of radical, because having a disability of any kind is not seen as something to be proud of by mainstream abled society, because it is seen as something that needs to be fixed and cured. Many parents advocate for people-first language with their disabled children. They say it’s because they want their child to be seen as a person first, and that their child’s disability shouldn’t define them. However, this may come out of these parents’ desire to separate the disability from the abled child they longed for. It’s painful for me to read about parents who cried when they first got their child’s diagnosis, because it comes from a place of pity, and a lot of that pity is towards themselves and how they know others will pity them, and how they are mourning for the abled child they thought they would have. But that child is still there. Mourning for what they could have been limits the celebration for the person that child is going to become. A lot of diagnoses were there beforehand too. For autistic people, they were always autistic. Mourning for the “normal” child that will never develop is cruel because that child was never at any point in their life that “normal” child.
Language shapes the context of future conversations. I am now seeing how the current identity-first language and label-oriented reality leads to an interpretation of pro-labels and pro-medication. However, there are still realms where anti-labels and anti-medication and people-first language occur, and that side can’t help everyone either.
Privilege and oppression are intertwined. They are not black and white occurrences in the world. What is privilege in one scenario is oppression in another.
It is important for us to realize that we live in hypocrisy. Society gives mixed messages, and our biases reflect how we see the world and which messages we let in or are more sensitive to.
(Written in December 2015)