Please Let Me Decide When I Want 'Independence'
Today I called an organization for people with disabilities to ask for help with something. I explained what I needed and asked whether it fell within the services they provide. The person on the other end of the line responded, “We try to encourage people with disabilities to do as much as they can independently.”
I felt hurt and ashamed because she seemed to be implying I shouldn’t have asked for help. Her statement suggested she could assess what I was capable of better than I. Although I’d thought through what I wanted help with and why, I began doubting myself: maybe I just needed to suck it up and do it on my own?
As my shame and anger subsided, I began considering her words “We try to encourage people with disabilities to do as much as they can independently.” I wondered… well, why? Who chose this goal? Do most of the people this organization serves want to “do as much as they can independently” and am I alone in having her statement rub me the wrong way?
In my opinion, “independence” is a misleading term. It casts people as individual agents rather than acknowledging we share a planet and its resources. I’m dependent on an array of other humans, from my mail carrier to farmers to electric company employees. We interact with people, animals, and plants, and are therefore interdependent.
That being said, I’m grateful to be able to do certain things on my own, and know my abilities are a form of privilege. For instance, I like having my own apartment. When I stayed at a psychiatric crisis respite program, I felt overwhelmed by others’ emotions and constantly monitored people in order to avoid being hurt. I appreciate being able to live “independently” because it allows me to avoid interpersonal stress.
When the woman on the phone implied I should act independently, I doubted myself partly because what I can and can’t do is far from clear. Many tasks fall into a gray zone of terrifying things, things I can do sometimes, or things I can do by myself but might do better with support.
For example, I can articulate ideas, but struggle to explain my psychiatric disability. I’ve been given labels including post-traumatic stress disorder (PTSD), delusions, paranoia, and borderline personality traits, yet I don’t experience these as “symptoms” separate from my self. I move through a terrifying yet mystical world. I usually feel no distinction between what is “real” versus what is “mental illness.” Nonetheless, I’m expected to explain how this “mental illness” affects my life in order to get services and benefits I need. I can do this myself, but I’ll do a more complete and accurate job if someone helps me.
I think we should have the right to decide for ourselves how much and what kinds of independence to strive for. I wouldn’t feel hurt by someone speaking for themselves and saying, “I want to do as much as I can independently.” I believe in fighting structural barriers that limit people’s ability to be independent.
At the same time, please don’t shame me for asking for help. If your organization can’t assist me, it’s fine to say so. However, please assume I’m able to define what I’m capable of and where my limits lie.