Tuesday, October 16, 2018

Responding to Caregivers Looking for Information on Disability

Saturday night I returned from a whirlwind 19 hours in Las Vegas for #NVLA18, where I presented on how library staff need to examine the lessons they've internalized about disability if we really want to get serious about accessibility and welcoming the disability community in the library.

My thoughts on how to talk about the disability community in the library continue to evolve as I learn and grow as a self-advocate. I'm realizing that for multiple reasons we can't talk about disability in the same frame as other marginalization, though it's important to acknowledge that particularly the intersection of race makes a member of the disability community more vulnerable to the societal effects of the abled narrative (follow Vilissa Thompson at Ramp Your Voice for more on the intersection of race and disability). There are specific challenges in regards to accessibility that disabled people face in society and the workplace; and often un-examined feelings about the disability can lead to a neglect of basic access needs.

So at #NVLA18 I tried my hand at a way to talk about accessibility and the way the abled narrative inserts itself into the framework in our profession. I framed the presentation through three overarching lies the abled narrative tells us; how each plays out in libraries; and some things we can do to counter and rebalance our thinking. A tall order for 50 minutes! But hey, I had a lot to say.

One part of the presentation was not only particularly difficult to write but also prompted some discussion afterward, and I thought it might make a good post for everyone to consider:

Accessibility Series logo by On a Roll Designs

I want you to imagine yourself in situation we all have found ourselves at one point or another, if you've ever worked at a public reference desk:

An adult walks up, perhaps hesitant, perhaps nervous. Maybe they have children with them; maybe not. Depending on how well they know you or the library, maybe they fidget with flyers on the desk before they step up. The reference interview begins: "Hi, how can I help you today?"

Th adult, perhaps, takes a deep breath, and says, "My child was just diagnosed with [autism/cerebral palsy/insert congenital disability here]."


How do you respond to this?

There are two extremely common responses that you're not alone in, if this is you:
1) "Oh, I'm so sorry."
2) "That's terrible! But you know, it's not all bad. My brother/son/uncle's fifth cousin/favorite Youtube star was born with [congenital disability] and they're really smart/kind/lovable/etc."

Because of how society views disability, these reactions are understandable. Here's some things to consider, though:
1) Library staff are some of the most trusted members of the community. Chances are they haven't said this out loud in public, and you're the first person they're telling. Your response can mean the world.
2) Major life changes can be particularly traumatic, and many caregivers understandably code a diagnosis as a major life change. One way people can deal with trauma is intellectualization. It is not our place to challenge them into Feelings in the middle of this public place from which they're seeking information.
3) That said, your reaction is your feelings/how you would feel about it. We can't assume that this is everyone's reaction. Maybe they're from a family where this congenital disability is common. Maybe they are just relieved because they knew SOMETHING was different and they're happy to name it. This, by the way, is why I am humbly requesting that you stop sad-reacting every time a Facebook friend announces a new diagnosis in the family. Show them love and support instead.

So  how DO you react? The same way you react to someone saying they want to learn to bake. Or they're planning a vacation. Or starting a business. Please just say "okay" and move on with the interview.

I actually remember multiple times at the desk where I'd have this interaction, and the adult would pause after they said the diagnosis to gauge my reaction. Abled people may not notice this, but I know the look well. They're looking to you. This is your time to be warm, positive, and informative. That's it.

You may wonder why I thought this small interaction was important enough to write a post about. Here's the thing: this can be one of the most powerful things you can do to welcome the disability community in the library. Be warm, positive, and informative. Families will feel accepted; they'll want to stick around. Maybe they'll meet each other and hang out outside of the library for friendship and support.

The reality is, children with disabilities are four times more likely to experience violence than abled children; specifically, it is six times more common for a disabled child to be deliberately killed by a parent or caregiver  than an abled child. Library staff might not be able to change the statistics personally, but re-framing the conversation can definitely help how empowered a caregiver feels at that given moment.

Library staff can hold a powerful role in a family's life, and it's important to own that and be warm, positive and informative for all reference interviews, but especially those in which we're helping them discover themselves.

Rather than feature a specific crowdfund, please take a look and follow @SJWishLists and donate to a PWD in need where you can.

Interested in diving into this topic? I'm running a continuing education course on the disability community in the library November-December 16. Join by Oct 22 for a 10% discount. Hope to see you there!


  1. Hello, may I post this to the California Library Association Youth Services Interest Group Facebook Page?