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“How come you can advocate so well for other people, but you can’t do it for you?”
“[Self]-advocacy only counts if you talk face-to-face, because people take writing the wrong way.”
These are some harmful things I was told 5 years ago in the aftermath of dealing with countless access barriers, blame for those barriers and resistance when I put up a boundary to protect my health and safety.
Related: Things I Want to Tell You But Can’t
For these reasons and more, Tara and I want to unpack what’s so wrong with self advocacy?
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What do we mean by “self-advocacy?”
TARA: In simple terms, self-advocacy is defined as speaking up for oneself.
The word seems to have been first used by activists during the disabled civil rights movements of the 1960s and 1970s. Now, though, self-advocacy is most often used by a majority nondisabled population. The education system, and by extension, nondisabled parents of disabled children, view self-advocacy as a central part of most IEPs.
For the purposes of this post, we will be looking at the term through a nondisabled lens.
TONIA: I honestly despise the term self-advocacy because it seems to now be exclusively used by nondisabled people about us. They never use the term about themselves. It seems to be something they feel they need to teach us.
It grates on me the same way “special needs” does in the sense that I don’t believe we need a special term for something that everyone does.
TARA: It does feel like a redundant (and harmful) euphemism!
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Isn’t self-advocacy a good thing?
TARA: Is standing up for oneself good? Sure. However, self-advocacy on its own in the face of systemic oppression does not lead to systemic change. Self-advocacy is now largely used to place the onus of systemic oppression onto disabled people.
TONIA: Thank you for summing this up so well!
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How is self-advocacy connected to ableism?
TARA: Self-advocacy attempts are too often not taken seriously. They are fodder for a cute story on Facebook or an “inspirational” moment. The other side of the situation is the reality that sometimes, self-advocacy of a need or a boundary leads to abuse. Both the inclination to minimize and abuse are rooted in ableism.
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How is self-advocacy about nondisabled people?
TARA: Nondisabled people will often center themselves or each other in a disabled person’s self-advocacy attempt, because of their role in helping the disabled person to master the skill. Either the disabled person is expected to share the achievement, or their achievement of self-advocacy is solely due to the tireless work ethic of nondisabled individuals in a disabled person’s life.
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How might disabled trauma responses be at odds with self-advocacy?
TONIA: My primary trauma response (when not encountering threat or violence) was to fawn -- that is to immediately move to people-please to avoid any conflict.
That meant that telling someone who wanted to help me “I can do it myself” felt dangerous. Because as a lot of nondisabled people know, refusing help by nondisabled people can make them mad.
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| [Tonia and Tara just before their eighth birthday, quietly ogling a wedding cake.] |
Being forced to say no to offers of help (even from authority figures) felt like trauma to me and often moved me into my other primary trauma response, which was to freeze. Either way, I was not doing self-advocacy right according to nondisabled people in my life.
TARA: There is an entire compliance culture that is specifically in place when a person is disabled. Disabled people are expected to endure painful or downright abusive therapies, surgeries or other "treatments." We often rely on a freeze or fawn trauma response as our only course of safety. And then, somewhere down the line in school during an IEP meeting, we are "called out" for the involuntary ways our brains are trying to keep us safe. We are too compliant for the education system. We've failed at being assertive and need a new goal - self-advocacy. This puts the onus of our oppression onto us. Any new issue that pops up is not due to systemic oppression, it is due to our failure to self-advocate.
(And if we succeed at it? Well as I shared earlier, that is either really cute or inspiring, or our parents and team pat themselves on the back for doing such a good job with us.)
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How is self-advocacy weaponized to keep disabled people compliant?
TONIA: Having grown up with self-advocacy as a goal on several of my IEPs, I know firsthand how this goal is used to silence us.
My so-called “goals” for self-advocacy were based on my teacher's and or my peers' judgement. They (as nondisabled people unfamiliar with my disability) were in charge of determining what I needed help with and what I did not.
So, nondisabled people decided when I needed help. Add to that the layer of forced politeness. I had to “appropriately turn down help.” And I also had to instinctively know when to thank “helpers” who swooped in and gave help I did not need, lest I get noticed by a nondisabled adult and the issue reported at the next IEP meeting.
And yes, I went to school a million years ago, but I see evidence of this even today. Nondisabled parents will say: “I taught my child self advocacy, and they used it against me!” when their disabled kid wants to choose their own hairstyle.
Self-advocacy is used as a tool to keep us compliant and to control us. Because whenever I (or other disabled people) actually advocate for ourselves? We are called rude or angry or ungrateful. The flipside of this? We are also blamed for being “overly compliant” even as teachers and parents admit having compliant disabled students is easier for them.
TARA: You touched on a really important point, Tonia. Tone-policing is a major problem for marginalized individuals. When it comes to self-advocacy for us as disabled people, the nondisabled expectation is that we do so in a calm, polite and mild manner. Attempts to stand up for ourselves that fall outside of these expectations are labeled as outbursts. Nondisabled reactions to a disabled outburst can range anywhere from disapproval to punishment, abuse, incarceration or homicide. Multiply marginalized disabled people tend to face more severe reactions to outbursts.
WHAT CAN YOU DO?
- Make it safe (no consequences) for a disabled person to communicate a limit.
- Recognize that everyone naturally advocates for themselves, because everyone communicates in some way.
- Don’t put limits around ways disabled people can advocate. Don’t force face-to-face interaction, verbal communication or politeness.
- Trust the disabled person in your life if they indicate that they are encountering ableism.
- Don’t expect a disabled person to navigate ableism alone.
- Use your privilege! (Everyone has some!) Safe and effective advocacy against systems of oppression requires the partnership of nonmarginalized (or more privileged) persons.
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