Compliments 101 by Cheryl Green

The first rule of complimenting a disabled person: There’s no actual rule for what we will or should take as a compliment.

The second rule: If we don’t feel complimented by your compliment, don’t blame our attitude. Perhaps what you said doesn’t feel affirmative to everyone.

The third rule: It’s important for me, one person, to not write a list of rules that’s supposed to cover 20% of the U.S. population and millions worldwide. That’s why my first two rules seem wishy-washy. They’re more “perhapses” than “rules.”

Here’s where I’m coming from. It’s very easy to find lists of etiquette advice for the disability community. (As if etiquette was more important than respect, dignity, and trust.) If a list is written by someone with an acquired disability, it might not reflect values of people who have experienced oppression and stigma their whole lives and who engaged in the disability civil rights movements (or anyone else with an acquired disability). Or if a straight, white person has written it, it’s not likely to resonate in communities of color and/or queer communities. Yet, people see a list written by one person and assume that the author spoke for all of us. Cue the clicking of the Facebook “Like” button 1.4K times.

We are a massive group with an even more massive set of different experiences. What entitles one person to write rules on behalf of everyone?
I’d like to pop back over to Rule #1. Let’s dig into a frequent compliment in my community–the traumatic brain injury community–that turns my stomach. I want to tell you why I don’t like it even though most people I’m friends with love it.

“I wouldn’t have known you had a brain injury if you didn’t tell me!”
Some people feel enriched by this compliment. That’s great. That supports my points that we have different experiences and perspectives, and the first rule I wrote might have some value.

I get why this is intended as a compliment and is taken as such: if someone becomes disabled, many people have a goal to get “normal” again, and others around them want that too. I’m not opposed to rehab for regaining lost skills; after all, some of my rehab was extremely valuable. I’m happy I relearned how to not get lost on the bus and that I now have control over my temper. What I’m opposed to is the notion that being, or passing as, normal merits a compliment.

When TBI is your label, many people want to tell you how much better you’re doing all the time. I have a friend who regularly tells others that they’re improving soooo muuuuch. I get this from her even though I’m not actively seeking to improve anything. I would prefer to receive the type of compliments given to non-disabled people over compliments that reinforce the notion that getting more normal must be a universal goal. After all, sometimes when she says I seem soooo muuuuch better, it’s because I’m hiding my impairments and attempting to pass. She’s complimenting me because I could fool a stranger into using the line I dread so much: “I wouldn’t have known you had a brain injury if you didn’t tell me!”.

This line, as a compliment, is ableist and normative. It shows how isolated and silenced my community is. If you really knew how many of us there are and how diverse we are, you would realize that brain injury experiences are on a spectrum. Sometimes we look and act just like someone without a brain injury; sometimes we look and act just like people with other kinds of impairments or identities. When it’s used on people with very apparent impairments, I see it as one of those ability-washing tropes that assumes everything about disability is negative and is to be ignored in favor of the perceived positive aspects of the person. Never mind that some people with substantial brain injury impairments are excited about and proud of themselves on this life path that only a brain injury could have led them down. Never mind that an observer’s idea of what is positive in a person with brain injury doesn’t always match the person’s own self-perception.

My own belief–and feel free to get defensive and tell me I’m over-sensitive here–is that this compliment also reinforces the pity and dismissal we feel toward people with lifelong impairments because we feel they’re unlucky that they never tasted “normal” like we once did. They don’t have the luxury that we brain-injured folks have of getting better. So we should give thanks that we can!

I don’t buy it. I don’t buy that my non-disabled youth was inherently better than the youth of my disabled friends because of my non-disability status. I was there. I didn’t enjoy my youth, and I know disabled people who did enjoy their youths. What I had for sure was more access and privilege than your average disabled kid. And I wish that was the topic of conversation, not observations about an individual’s capacity and willingness to be or get or act “normal.”

As long as people with brain injury are objectified and reduced down to our brain injury story and our impairments (or ability to hide or compensate for them), as a group we will love to be told we don’t seem disabled. You know, like “one of them.” Personally, I don’t feel complimented when someone says I don’t seem like I have a disability. Because to compliment me on my seeming normalness is to insult those who can’t hide theirs or wouldn’t want to. It’s fine as a statement of fact because honestly, I know that I pass. But passing is not my source of pride. It’s just something I can do because my impairments are now very mild and because I’m good at hiding them when I want to and paying the price later in private.

I often go on about how people with brain injuries are people, not patients. We’re people. Therefore, I ask you to not be surprised by our impairments, our seeming lack of impairments, or our genuine lack of impairments. And when you have the urge to give a compliment, you might want to find out what our own sources of pride are first. Because if you compliment us on something we take no pride in, then be prepared that it might not feel like a compliment to one of us.

In the end, I’m not asking people to stop saying that line I dread so much. I ask that you consider whose values it represents when you give it as a compliment. And if “I wouldn’t have known you had a brain injury if you didn’t tell me!” doesn’t seem like it would make your conversation partner glow with pride, perhaps a different type of compliment is in order or none at all. After all, having an intimate relationship to disability does not mean someone is lacking in pride and requires validation and compliments from others. Sometimes we like to talk about the weather too.

Disability Visibility Project- Interview with Alice Wong

 

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Alice Wong

What is the disability visibility project and how did it get started?

Disability Visibility Project: A Community Partnership with StoryCorps is a year-long grassroots campaign encouraging people with disabilities to record their stories at StoryCorps (3 locations: Atlanta, Chicago, San Francisco and a mobile tour) celebrating the upcoming 25th anniversary of the ADA in 2015.

As a public radio nerd, I love listening to NPR and one of my favorite segments on Morning Edition are stories from StoryCorps. Last year StoryCorps San Francisco had an event at the Contemporary Jewish Museum where they brought together the actual people featured in some of their most popular stories. At the event the presenter talked about community partnerships and it made me think about the disability community. I went up to someone from StoryCorps and asked whether they had any current community partnerships with a disability organization and they said no. I was really surprised since there’s such a rich disability community in the Bay Area. I thought this was a golden opportunity to do something.

Fast forward about a year and after several conversations and lots of emails, StoryCorps San Francisco formed a community partnership with us. They set aside a number of reservations just for members of the disability community in the Bay Area with a separate link from their general reservation system. The other StoryCorps locations and their Mobile Tour are aware of the project as well since we expect people with disabilities to participate at all locations.

What motivated you to initiate the project?

After living in San Francisco for over 10 years, I’ve been so lucky to be in contact with some amazing people–activists, academics, parents, professionals, artists, whatever. I know that a lot of national disability organizations are planning some major events in 2015 and I thought this could be my small way of giving back to the disability community. Our history rarely shows up in high school textbooks. We have to value our stories and document our culture in as many ways as possible. StoryCorps provides a platform for people to do that by having a conversation with a friend. It’s a simple act that most people do everyday. Those recordings will be archived at the Library of Congress which is a pretty cool thing.

How do people get involved?

For people in the SF Bay Area, Atlanta and Chicago, I would go to StoryCorps’ website and book an appointment through their reservation system. When people make their reservation online, they should mention the Disability Visibility Project in the Notes section of the online form so the recording is tagged. If there aren’t any appointments that available, I’d consider joining their wait list. For people who don’t live in those 3 areas, I’d periodically check their Mobile Tour to see if there are any future dates in their region. For more details on how to participate and updates on the project, they can check our website or join our Facebook group.

What kinds of stories are you looking to record?

Some people asked whether they have to talk about the ADA or not and my answer is it’s completely optional. The Disability Visibility Project is using the ADA as a springboard to have people with disabilities reflect about their past, present and future. Everyone has an interesting story to tell. It can be about your passions and hobbies, your personal life as a sibling, parent or spouse or something about the work you do. Much of it might depend on your interview partner and what you two share together when it comes to the disability experience. People don’t have to talk about activism, disability rights or legislation like the ADA or section 504 of the Rehab Act but they could if those topics are important to them.

Why is this project needed?

This is an overused word, but I think the Disability Visibility Project empowers people. Rather than waiting for historians to identify and document events that are ‘significant,’ StoryCorps and this project encourages people to decide what’s important. All people can create and record history and all people have stories that are worth sharing and preserving. What’s exciting to me is that when people make tag their recordings a part of the Disability Visibility Project, those stories will be part of a distinct collection that can be searchable by the public at the Library of Congress. The mission of our project is simple:  ‘Recording disability history, one story at a time.’

Criptiques Podcast Episode 1: Emily Ladau

Welcome to the first ever Criptiques Podcast. On this episode, I talk with Criptiques contributor and Words I Wheel By blogger, Emily Ladau. We talk about language, disability activism, growing up with a disabled mom, and the Criptiques anthology.

Emily Ladau

[ Emily sitting in wheelchair, smiling at the camera, in a white sweater ]

Transcript: 

Hi, my name is Caitlin Wood and you’re listening to the Criptiques podcast. Today my guest is Emily Ladau who’s a Criptiques contributor, and also does the blog WordsIWheelBy.com. You can find more information about Criptiques at Criptiques.com and visit us on Facebook.


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Books are here!

Ten boxes worth of Criptiques books have just arrived on my doorstep! Now we get to the fun part- actually sending them out!

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[Image description: three pictures. Left hand corner is a stack of brown boxes with a blue Criptiques book lying on top. Underneath is a picture of the blue Criptiques book on top of a blue Criptiques shirt and black and white sticker and button. To the right is a large closeup photo of the Criptiques cover].