512 words
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This week, I'm sharing my sister, Tara's responses to these questions. I love talking to Tara about anything disability-related, her perspective is so different from mine. She often thinks about things I forget to even mention. Her voice is so valuable.
Here's what she has to say:
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Were you allowed to say “I can’t” when you were growing up?
TARA: If I indicated fear as a young child, that was occasionally acceptable. “Can’t” was largely viewed as manipulation and / or l*ziness.
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What do you mean as a person with a disability when you say, “I can’t?” (Are there cultural nuances to the phrase that get misunderstood?)
TARA: Sometimes, “I can’t” indicates a firm limit, as in “My brain / body literally cannot do the thing.” And sometimes, it refers a projected overextension of my bodymind’s capabilities. And the latter, I think, can be particularly misunderstood.
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What risks or vulnerabilities exist in saying “I can’t” as a disabled person?
TARA: Honestly, it’s opening yourself up to all sorts of potential ableism, from microaggressions to gaslighting to all sorts of abuse.
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Do you have any memories of saying or wanting to say, “I can’t?” How was this limit received?
TARA: I remember being in a swimming class as a very young child. I knew I couldn’t swim, even after several lessons.
One day, the swimmers were made to swim from one adult to another, several yards away. I sobbed and clung to the adult who held me. I don’t recall saying, “I can’t.” (An undiagnosed communication disorder made speaking in certain situations impossible.)
The response to my intense fear and nonverbal “no” was to be pushed out into the open water of the swimming pool, where I promptly began to sink.
I was not rescued immediately. It seemed that they waited to see whether I would begin to swim after all, before coming to the conclusion that I did, in fact, need intervention.
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| [Tara, left, and Tonia, right, smiling on Christmas morning. We are 4 years old.] |
What message was conveyed to you because of moments like this?
TARA: So many messages were conveyed by that moment: “The world is scary.” “Your feelings don’t matter.” “Your safety doesn’t matter.” “You are powerless against those bigger than you.”
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Have your experiences contributed to the way you set or struggle to set boundaries?
TARA: Compliance culture is huge in the disability community. As such, boundaries really have no place for many of us growing up.
I honestly had no boundaries for a very long time. It took decades for me to understand that boundaries were actually healthy to have, and that they applied to me.
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I think that it's important to include disability in teaching about cultural competence in the world. So often, this competency is portrayed as being solely rooted in race/ethicity, customs, religious behaviors, etc. But how to approach disability with compassion and sensitivity is often neglected (sometimes substituting some version of tolerance, which is far from adequate and completely dehumanizing), and this is a huge oversight.
ReplyDeleteI'm definitely with you on this.
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