Editor’s Note: This week our nation saw too much gun violence driven by racism. To my BIPOC community — please take care of yourselves and one another. I chose not to write about it this week as I have nothing new to add to the conversation. Doing so would only add to the echo chamber of rhetoric instead of action. My action this week to fight the violence is to be an ally to the Disability Justice community; an area I need to learn more about, and I think makes me a better ally and member of the BIPOCs community as well.
We welcome back now a regular guest writer to Fakequity, Carrie Basas. Carrie is a white ally who frequently writes for us about disability justice. Carrie recently told me about how she attended a funeral by Zoom (teleconferencing) and how being intentional with the design-led to more inclusive results. I’ve invited her to expand on this conversation and to talk about ableism.
By Carrie Basas
Last week, I attended a memorial service of a queer, disabled, Latina mentor who was killed by the healthcare system. Her insurance denied her the $2,000 medication that would have ended an infection. It chose, instead, to pay over $1-million in healthcare costs that were effective only in ending her life. My friend was a fierce, compassionate advocate. She fought to dismantle discrimination against disabled parents. She highlighted how assisted suicide devalues disabled lives. She protested cuts to Medicaid. If anyone could have survived incompetence and ableism, it would have been her, but it’s not that simple. That scares me.
My community created a Zoom video call option for the memorial, which was inclusive on many levels. Those of us not in Denver watched the livestream, complete with ASL interpretation. There were captions in the video call. Remote participation also brought our community together in ways that wouldn’t have been possible given people’s disability-related barriers for travel, including the economics of it for our largely poor community. I was reminded that I can stop being so anxious about access when my people are in charge of it. We don’t always get it right for one another but I rarely see someone shamed for asking for it for themselves or others.
Contrast that experience with other conversations that I’ve had lately outside my community. I say “disability justice,” particularly accessibility or inclusive design and find:
- People get very emotional and defensive.
- Non-disabled people start protecting one another, sometimes even soothing one another.
- There are loud sighs, the verbal equivalent of “Not this again” or “I’ve been very busy.” Sometimes, people skip the sighs and just say those things.
- People point out how much they have already done and wait for a thank you.
Sometimes, non-disabled people defend their participation in perpetuating access injustices and barriers to belonging by claiming it wasn’t their intent. These are folks that might be very woke about other issues, yet, when it comes to disability, there’s just something different about the conversation. Systems reinforce oppression and those that control them do, too, whether or not they intend it. We should know this from even the very bad diversity trainings we’ve attended: impact is a better metric than our retorts and excuses that we aren’t haters.
Why is recognizing ableism as systemic and structural so difficult? I see too many organizations equating “doing disability” with optional. Over twenty-percent of the U.S. population has disabilities but when our community expects non-disabled people to fight for access and belonging for us, then we are seen as rallying for fringe, self-serving issues.
Why can’t we see that how we communicate and meet, where we hold things and how we talk about those differences have important impacts? Once we mangle an access justice conversation into whether or not a non-disabled person has good intent, then the next agenda item is questioning the disabled person’s intent and reasonableness. When we hide behind good intent, we are not only defensive but also shaming and silencing of disabled people for expecting to be part of communities. Separate is not equal. Lobbying to be treated with the same level of respect shouldn’t be a condition of any relationship, professional or personal.
Recently, I’ve stopped thanking people profusely for making things accessible. I realized that I was getting irked when people looked at me waiting to be thanked. I used to be effusive but now if I sense smell that they are looking for it because they see their accessibility efforts as heroic or good deeds, then I am reticent to thank them. I’m withholding gratitude for people honoring my lived experiences after I’ve had to ask them to do so a few times. Quietly, I’m sincerely grateful to others for not disappointing me but there aren’t many premade cards for that holiday.
Why have I gotten to be such an ingrate? I’m taking my lead from BIPOC organizers that I respect. I doubt Erin would go up and thank someone for not being such a big racist today. And I’m pretty sure my friend wouldn’t have sent heart-shaped notes to the doctors who doubted her bodily wisdom and honored their professional brilliance and immediate costs, instead. It comes down to being in a respectful and justice based relationship.
When you decide to work toward disability justice, you can no longer operate under a charitable mindset. When you work to be anti-ableist and anti-racist, for example, you chip away at all the exhausting, relentless labor that disabled BIPOCs carry daily. Doing that means you’d be really offended if they baked cupcakes in your honor and handed you a trophy.
You do it because that’s what needs to be done and not by the people most marginalized by access injustices. You take some of the load because it’s your turn and it’s right– and we have every reason to expect it from you. We should not have to ask you with multiple “pleases” and “thank yous.”
I perform a dizzying dance of self-accommodation in my life (e.g., arriving at inaccessible meetings 30-45 minutes early to figure out where to park, moving furniture around, sitting close to the front, limiting my liquids as to not test your bathroom accessibility, self-regulating disappointment, rubbing myself down with your grandpa’s ointments). I try to make my access without needing non-disabled people to help because they are often disappointing and make me feel more vulnerable and alone, intended or not. I’m a person with a history of being excluded, acted upon, patted on the head, patted down, talked down to, stared at, shunned, and infantilized.
So often disabled folks feel like we have to go along to get along because it means keeping our jobs, reputations, supports, or healthcare. We are dependent on non-disabled people’s good graces to let us in or let us stay. We are told that our lives are judged as worthy or not by charitable non-disabled people who “see beyond our differing abilities” (ps: please, never use that phrase). These kinds of attitudes are ableism. Ableism in its clearest form kills people in my community. It wasn’t just one person.
What does everyday ableism look like? Absolving yourself from your impact, defaulting to intent and thinking “I didn’t mean to exclude people with disabilities.” Seeing disabled people as less than other people; we hurt and love just as much as others. Not realizing that you see our requests as annoyances and not wanting to realize that. I have this little voice in my head from others who told, showed, or reminded me that people like me aren’t often let into non-disabled spaces. It’s a privilege and honor; I’d better be grateful. This is ableism and oppression; as a society, we can do better than this.
The next time you plan an event, host a meeting, engage with others ask yourself what you are doing to create a space welcoming of people with disabilities. Access is a start to reaching towards disabilities justice.
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