Cussin’ and Discussin’

Mel being human in a world that says I’m not.

Illustration of Momo walking in front of a bunch of clocks, with a

tortoise.

DEVELOPMENTAL DISABILITY, DISABILITY RIGHTS,

SELF-ADVOCACY
I need time. This is about accessibility.
Posted on June 4, 2019
By Mel Baggs

I need time.

It takes me time to understand things.

It takes me time to make words.

It takes me time to respond to things.

To make medical decisions, I need the time to have a two way

conversation with the doctor.

I need time.

Nothing changes this.

Shortcuts and attempts to speed it up slow it down more.

I literally walk faster than I run.

My brain is the same way kind of.

I get there. But I need the time. If it seems fast it’s because I’ve
done it a million times already, many of them slowly.

Many times people assume based on the end product.

So if I have a complex thought they think it’s a fast thought.

I get to complex thoughts slowly usually.

Or they look complex. But they’re actually simple. But they

translate as complex when they combine with language. Or
people think lots of words means complicated. It doesn’t. It can
mean I had trouble finding the right ones.

At any rate if people think they see complicated thoughts they

often think that means fast thoughts. Or they think if I type or
move fast I think and understand fast. Or they think fast in one
context means fast in another.

None of those things are true.

I do best with things outside of what most people think like.

To get usual types of information and respond and have it be

meaningful I need time. Lots of time. I get there but it takes a lot
of extra time whether anyone sees that time or not.

To make it look fast I have to take dangerous shortcuts that harm

me or confuse me.

I get confused easily.

I am good at not showing it. I suspect anyway. Sometimes.

But I get confused a lot. And it takes me time.

All of this is disability related.

I have developmental disabilities. I have cognitive disabilities. I

have physical disabilities. All of these things are part of it in their
own ways.

I usually tell people if you think of me as having a brain injury I

make more sense. It’s the easiest analogy most people are likely
to be familiar with.

But really as labels go I can identify a lot cognitively with people

with dementia, stroke, brain injury, intellectual disability, epilepsy,
autism, learning disabilities, developmental disabilities, and lots of
other things. Some of which are labels I’ve received or qualify for
and some aren’t, but there’s cousinhood going on big time even
when I don’t. Cognitive kinship.

It’s the way thinking works and the obstacles we face in the
outside world that determine our similarities and differences, far
more than what diagnosis someone decided to give us.

That’s one reason I don’t like communities based in a single

diagnostic label. I’d rather seek out familiar people wherever they
can be found. And there’s something degrading about being told
that it’s the labels the medical profession decided to give us that
determines whether we find that kinship. That’s one reason the
developmental disability self-advocacy community insists on
labels as less important than in some other disability
communities. We’ve found a kinship based on common
experiences and common values and desires among other things.
And we prefer that to being divided up by other people’s ideas of
categories. And we’ve had our categories used to erase our
humanity. We have lots of reasons.

Most people with developmental disabilities have cognitive

disabilities of some kind. And many of us, for many reasons, take
time to figure things out, time to respond, time.

This is not just a personal request. It’s about accessibility.

Accessibility isn’t just about what people want. In many places,
including here in the USA, it’s the law.

Accessibility is a disability rights idea.

It has to do with the fact that societies plan for some people to be
there, take for granted that some people will be there, build
everything physical and social around the strengths and
weaknesses of that kind of person. And then other people aren’t
planned for or taken for granted and there’s all these obstacles to
our participation in society. We are the disabled people.

Accessibility is about making it possible for everyone to

participate by removing those obstacles and barriers that
shouldn’t be there, and by building things in ways that make it as
easy as possible for us to be there and participate and be part of
things.

That isn’t the world’s best description but I’m trying. Most people if
they’ve heard of accessibility they’ve heard if things like curb cuts
and wheelchair ramps and elevators. Things that apply to
physically disabled wheelchair users mostly.

Cognitive accessibility is different. Most people haven’t heard of it.

Many physically disabled people who are big on physical
accessibility don’t even believe in it. It’s part of ableist bigotry
against cognitively disabled people.

But it’s huge. Just like physical access it can be life and death.

And for many cognitively disabled people, TIME IS ONE OF OUR

BIGGEST ACCESSIBILITY ISSUES.

You need to give me time to think. Time to understand. Time to

respond. Time to have a back and forth conversation. Time to put
things together. TIME.

And the time needs to be without pressure. Without judging me

for needing more time. Without making me explain why I need
time. Without treating me as demanding. Without acting like your
time is so utterly valuable that to give me even five seconds is a
giant favor. Without acting like cognitive accessibility is a favor at
all. Without all kinds of bizarre conditions in order to qualify as
worthy of your time. Without treating me like I’m asking for special
treatment. Without using the fact you gave me extra time to
demand other things of me later.

None of those things are how real accessibility works. Because all
of those things treat me at best like I’m only welcome under
certain conditions. Like I’m only welcome because you’ve decided
you want to be nice to me today. That’s not welcome. And it’s not
accessibility. A wheelchair ramp that disappears and turns into a
staircase whenever a wheelchair user feels grouchy isn’t access
either.

Time isn’t always easy to come by. But we can’t just make our
brains run the standard way. We need more time than usual. Or
we need the time we have used different than usual. Or
something.

Not getting enough time is such a common obstacle to access for

such a huge and diverse group of people. Yet time is rarely seen
as an access barrier. And when people bother to give us the time
we need, it’s treated like a favor. Or like something that isn’t
actually necessary. Something that wouldn’t be a problem to take
away. And it’s our problem if we can’t keep up.

I’m dealing with huge timing issues in the hospital. It affects

everything from comprehension to communication. It’s interfering
with some of the most basic parts of my medical care. I’m getting
exhausted, scared, and discouraged trying to cram my abilities
into a speed that’s impossible for me. And half the time I’m not
even getting the time to explain what I need when it comes to
time: people force the conversations so fast it distorts
communication at best and they can’t even tell it’s happening.

I’m not the only one. I had a roommate who communicated

complex thoughts when we were alone but couldn’t get three
words out around family and staff before they’d all decide what
she was thinking. That’s a lot of things including lack of respect,
but part of giving her respect was giving her time.

Meanwhile I’m always getting lectured on how I don’t respect

people’s time because I make timing mistakes directly related to
being disabled. >_< From people who rarely give me time enough
to understand or respond right to anything.

People turn my access requests into weapons against me.

Requests for time become ways to paint me as demanding or
entitled. If I’m granted time, people will later explode at me if I still
don’t understand.

“I GAVE YOU A WHOLE HOUR OF MY TIME AND I’M NOT

ANSWERING ANY MORE QUESTIONS!” A doctor who was paid
for an hour of consultation about choices between different styles
of feeding tube. Later he happened to be assigned to me for a
totally unrelated procedure and apparently the “favor” of his paid
time meant he couldn’t answer a simple routine question any
patient would ask. All I needed to know was whether I was getting
Propofol during the procedure. Instead he wouldn’t even listen
long enough to find out what I was asking. And I got shouted at
just before a stressful procedure taking place in a room that gives
me PTSD flashbacks every time I see it. I ended up with
somewhat dangerous cortisol issues all because he happened to
be the same doctor paid to spend an hour with me once.

People go out of their way to tell me what a hassle it is to give me

any of their time at all. Even when they’re paid good money for it.
The same people go out of their way to insist I don’t value their
time enough. Often based on a false equality. But also based on
rules I can never predict or follow because they require cognitive
skills I don’t have.

This leaves me in the permanent belief that my time has no value

at all. But that everyone else’s time is worth something close to
infinity.

Mind you, until recently, using words or ideas like “time being
worth something” would never have occurred to me. I’m still not
sure it sits right in my head. And I’m not sure if it not sitting right is
for a good reason or not. It just isn’t a way I think of time. Not the
way they seem to mean it. Of course I barely understand time at
all. But this way still confuses me.

But I do understand the concept of everyone always has to take

time for me. And that this is a huge waste if their time. Because
I’ve heard that my entire life.

I don’t actually buy the idea that my trouble processing time

makes me a bad person who doesn’t understand the huge value
of everyone else’s time. Or a person who needs to be
condescendingly taught about such things. Because that just
doesn’t pass any of my mental smell tests. But the way I’ve been
treated and what I’ve been told leads me to feel that way.

So one barrier to access for many of us is time. But an additional

one is the belief that we barely deserve the time we get, don’t
deserve more, and are just taking away from everyone else’s
much more important time. These add together until we get less
time and lower quality time (like when the person spends the
whole time letting you know you inconvenienced them), when we
need more.

I need time.

But this is more than a personal need. It’s an accessibility issue. It

changes how I’m able to participate in society. Right now it’s
messing up my medical care. It’s a huge important deal, not an
afterthought. And I’ve rarely met anyone with developmental or
cognitive disabilities where time wasn’t an obstacle to access.

So giving us time, when it’s possible, isn’t a favor. It’s an access

issue. And be real careful declaring it impossible, because there’s
usually a solution. A lot of the time when people say it’s
impossible they really mean it’s not important to them or they’ve
always planned their time with a lack of time for us just built in. I
only mentioned possible because there’s some people with
cognitive disabilities whose own time issues make it hard for us to
do this for someone no matter how hard we try. But for most
people that isn’t a problem. And there are often solutions when
time is limited. You just have to start from the assumption this is
both important and possible.

Time is certainly important to those of us who need more of it.

And it’s an accessibility issue just as important as wheelchair
ramps, curb cuts, or Braille. It seems like such a little thing but
nobody wants to give it.
TAGGED: access, accessibility, cognitive access, cognitive
accessibility, cognitive disability, Developmental disability,
disability rights, Self-advocacy, slowing down, slowness, speed,
thinking, time

Author: Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and
where I belong in the world. I relate to objects as if they are alive,
but as things with identities and properties all of their own, not as
something human-like. Culturally I'm from a California Okie
background. Crochet or otherwise create constantly, write poetry
and paint when I can. Proud member of the developmental
disability self-advocacy movement. I care a lot more about being
a human being than I care about what categories I fit into.