TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof)
make in their lives. Today’s story is from Savannah Logsdon-Breakstone, about getting comfortable with asking for crucial accommodations — and setting one’s own boundaries about those supports.
When I first moved out, we didn’t realize that I needed the support
that I do. I’ve talked about some of these things before on this blog,
so I’m going to give each of them a paragraph.
I understand general concepts around money management, but am unable
to consistently apply it to my own life. (Example: I might need
something but not get it, because I’m worried I won’t have enough money,
even though it’s what the money is supposed to be there for.)
Additionally, I have executive functioning issues that mean that making
sure the right things happen at the right time is extremely labor
intensive for me. And finally, my anxiety levels when dealing with
the various sorts of paperwork around money are high enough that I can’t
get it done — I can’t believe the reasonable parts of my brain during an
anxiety episode. Therefore, I have a payee who doubles as a financial
manager. He manages my money, and the paperwork involved.
When I first was living on my own, and a couple of attempts thereafter, I got very sick,
sick enough that it was life threatening. Each case was related to how
my executive functioning skills (specifically around time,
prioritization, identification, and initiation) impacted my ability to
manage my environment. I know how to do the individual tasks, am
physically able to do them (or most of them now — I’ve had physical
health changes) but am not able to manage them or figure out what needs
done, when, how often, and with what urgency. This is not an easy thing
for me. So my sister comes over once a week and together we take care of
what she helps me identify what needs done next. We generally divide up
I attend therapy regularly for the anxiety specifically, though for
other things too. I practice certain things. In fact, I’m considering
volunteering with Librivox, to practice on my anxiety around phone calls.
However, there are some things that I will not be able to change
about how my brain is able to handle things. The need to be okay with
that is higher than my need to be 100% independent from my family right
now. Without being okay with needing support, things can be a lot worse
emotionally. And digging out the ways we are trained to be ashamed of
the need for help, and specifically for the types of help based on
disability, is really difficult.
We have enough difficulties with the myth of the true rugged
individualist, the idea that a person can do all things needed to live
their lives without any help from anyone else. We have infrastructure
to help make travel and transporting good safer, easier, and quicker.
Someone else probably grew, raised, or constructed the fiber that your
clothing is made from, even if you sew your own, or you would not have
time to raise/grow your food, craft your materials, and so on. Even
before modern markets, there are very practical reasons why people lived
in groups ranging from families (ineffective contraception isn’t the
only reason for large families!) to cities. Humans are interdependent; the
quality of our lives is improved by us supporting each other in various
ways. It can be for any number of reasons, and doesn’t require good will
for the standard ways that humans form interdependent networks.
What we run up against is the above mentioned concept interacting
with diverse realities. Because someone who isn’t disabled has their
basic needs supported without additional requests or effort by the
community, those supports become effectively invisible to that person.
But when those of us who have a different set of needs shows up, the
additional support seems “special” even when it is meeting less of the
individual’s needs than a non-disabled person usually gets. This makes
people uncomfortable in other ways, such as making people think
critically about cultural ideas that they operate under. The practical
result often ends up being that people are encouraged not to find the
supports that work best for them and not develop skills they are ready
for, but to instead push to conform to the number or types of support
that a typical non-disabled person might use as much as possible.
Don’t misunderstand, skill development is an important thing for
everyone, regardless of disability status, to engage in. Life time
learning is a great thing for everyone. But when there’s a push to
conform to typicality, the individual’s well being is marginalized. This
goes for a wide range of disabilities.
I have friends with physical
disabilities from childhood who have some very upsetting stories about physical therapists
or teachers who aimed to get them to accomplish things their bodies
weren’t ready for, and some of those friends retain negative body images because of those experiences. Others were pushed to a point where their long term wellness or mobility
was neglected for more immediate gains, and have had age related
decompensation at an accelerated rate because that push caused long term
damage. Thankfully there are people who aren’t like these professionals
out there, but there is still a big pressure within our culture to
So when people ask me, “Why Don’t You Just Learn X,” even assuming that they are
meaning to be helpful or at least positive, I feel defensive and mildly
offended. It’s an emotional reaction, based on being under pressure to
conform to certain expectations, and being taught — for years — that my inability to
perfect those expectations was a moral failure. Trying to undo
the emotional impact of my experience is very difficult.
Essentially, I have a decent idea at this point of what I’m ready to
work on developing, and if I need help figuring out the next step, I’ll