NOTE: If you're new here, welcome! When I write about accessibility, you will find that I use the terms "people with disabilities", "PWD", "the disability community", and "disabled people" interchangeably. This is something I deliberately do to challenge our institutional insistence on "person-first language."
I have this thing due to my cerebral palsy where the muscles
in my right hand constantly want to be clenched in a fist. This runs the
spectrum from annoying, since it distracts people, to frustrating, because if I’m
holding something in my left hand I’m basically immobilized, to incredibly
painful. All of my shoulder muscles are nearly constantly tense. Add to this
the practice of mirroring; which is where my right hand just really wants to do
anything my left hand does due to my mixed-up-rewired Frankenstein of a brain.
This results in things like having to ice down my hand after work if I’m
writing all day by hand, my right hand deciding that WE TOTALLY NEED TO CLENCH
A TIGHTER FIST THIS IS A LOT OF WRITING WE’RE DOING. Standardized tests were a
nightmare.
“This thing” is actually a leftover from the Moro reflex, a reflex useful to infants to cling to a parent for survival. It looks
like this should go away by the time a child is 6 months old. I’m not big on
developmental timelines, since there can be a lot of parental anxiety about
that, but I’m thinking 35 is a safe age to say this shouldn’t be happening.
My brain is developmentally disabled, and my
body performs in a way that mimics a baby. So, I have the mind of an infant.
A cat in an astronaut helmet emerging from a door with a key. This is the Accessibility Series logo by On A Roll Designs. |
I’ve chosen to open
this post this way to demonstrate how misleading mental age theory can be, and
how wrong we are when we talk about developmentally/intellectually disabled
adults like this in the library. I know that there are people reading this who are
already thinking, “But you’re not like [insert Person You Know Here!] You’re
high-functioning/verbal/educated/etc!” First of all, please see this
masterpost of how functioning labels can be harmful, and I reject your
desire for me to separate myself a community that is fighting for access,
because we’re stronger together. Additionally, we developmentally/intellectually
disabled people are more alike than we are unalike.
I’ve talked to multiple
people online, particularly nonverbal ones, whose caregivers misunderstand and/or
misrepresent their abilities due to an inability to effectively communicate
with them. I want to point you to two articles that can help you further
understand the extent to which this is an issue:
“Non-speaking,‘low-functioning’” by Amy Sequenzia talks about Amy’s frustration with
functioning labels. Amy describes her experiences with IQ Tests, and how
performance on the test is not necessarily indicative of mental age.
“Mental Age Theory Hurts People with Disabilities” by Ivanova Smith gives a brief
history of mental age theory. Ivanova laments that people with developmental/intellectual
disabilities are regularly assumed to never acquire independence, pursue
education, or have intimate relationships.
Please read those and come back.
Okay, so: how does this relate to libraries?
I hope you’ve already started turning your brain over these
ideas and implications for libraries. Here are some ways I want to encourage
you to do, and think about challenging your institution about, right away:
Talk to people with developmental/intellectual
disabilities: Say hi. Not to the abled caregiver they are with (okay, you can
say hi to both).*
Talk to adults with developmental/intellectual
disabilities like adults: People don’t want to go back to places where they
feel condescended to/patronized. Sure, they may come back, because their
caregiver wanted to go and so they are taking them. If a caregiver tells you
that the adult doesn’t understand what you’re saying, realize that this may not
be the reality. Continue to talk to the adult even if the caregiver answers for
you. Possible script: “Thanks for helping us. Since this is [name]’s
book request, though, I’d like to continue to communicate with [pronoun] as
directly as I can.”
Run programs for adults with disabilities
out of the adult department rather than the children’s department: Or,
truly, anyone with the most experience/comfort with the populations could best
serve the program. Just understand that it is not a children’s program, even if
they are engaging with media or toys with children as the intended audience. There
are plenty of abled adults, for instance, that would attend a Harry Potter
event at every opportunity. We don’t say it’s because they’re not “smart
enough” to engage with media from the adult section, or that the demonstration of this behavior we associate with children makes them like a child in all other ways.
If you are going to have a storytime that
includes adults with disabilities, schedule one that is separate from your
preschool/family storytime: Developmentally/intellectually disabled adults
may like to spend time with kids for reasons that lots of adults do: they’re
friendly and non-judgemental; they have interests in common (tell me you’ve
never had an extended conversation with a kid about dinosaurs or Star Wars that’s
left you PUMPED). Not because they think they are the same. Hell, I bet there’s
a ton of developmentally/intellectually disabled adults who HATE kids and wish
they’d just leave the premises. On the other hand, the ableist framing of
developmentally disabled adults in society paired with ableist social norms may
get you complaints from parents and caregivers in storytime, and may cause a
negative experience for everyone. I agree with those parents on one thing: that
storytime is not for them. Developmentally/Intellectually disabled adults
deserve to be there, just like everyone else, and they also deserve their own
programming and/or to be expected in adult programs.
It may come as a surprise that adults with
developmental/intellectual disabilities are people, just like you are a person.
I hope that one day that’s no longer the case, but until then please help by
educating and reminding yourself and your staff.
* I’m talking to the abled people who are Just Fine specifically
ignoring people with disabilities because you are uncomfortable: Do some work
to overcome your internalized ableism. It is ingrained into the fabric of our
culture and society depends on it to marginalize and oppress over multiple
identities, and that is not your fault. You need to work on it, though, please.
Want more on accessibility? Click here for more in the Accessibility Series.
Are you a disabled/neurodivergent/chronically ill library staff member who would like to guest post here? Click here for more information on writing a post of the accessibility. Posts on accessibility by abled members of the library community are not accepted.
The Accessibility Series was made possible by a grant from Awesome Without Borders.
Hi Bryce, I really love your blog and devour the latest post as soon as it arrives. I would really appreciate your opinion about the following: developmentally/intellectually disabled adults using the teen or children public computers, versus the adult computers (in another separate area). Reasons given for this practice (it's not policy): (1) the youth/YA computers have headphones attached and (2) sometimes these groups of adults are noisy. I would love to know your honest thoughts on that practice. Thanks!
ReplyDeleteHi! Thank you so much for reading and engaging with my blog, I really appreciate it. I have lots of thoughts on this, would like some more info, and would like to find out if there are more resources out there. I'm afraid it would turn into too long of a comment :) Can you email me about this issue at brycekozla at gmail dot com? If we find a workable solution maybe I'll make a post about this specifically.
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