TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof)
make in their lives. Today we are featuring a Q & A with Sara M. Acevedo, discussing how her well being depends significantly on not being exposed to scented products, yet how infrequently those accessibility rights and accommodation needs are taken seriously, viewed respectfully — or met.

2711481737_853e09879f-5222983
Photo © Philippe Leroyer.
Creative Commons License.
[Image: Black-and-white photo of a ponytailed
white woman in profile, inside a mist/gas cloud.]

Sara M. Acevedo sacevedoespinal.wix.com/neurowitching

TPGA: When you need to enter a new room or meet new people, what are some factors you have to worry about?

Sara M. Acevedo: Before
attending an event, coming into a new meeting space, or a new social
space, there are some things that are not simply relevant, but actually
vital
for me to consider: Among other external factors, my priority
remains the exposure to chemical and so-called ‘natural’ scented
products and fragrances (including perfumes, body lotions, deodorants,
and hair products among others), as they represent a hazard to my
overall well being. In this sense, both the physical/physiological and
the psychological/ emotional aspects of my being are impacted negatively
by the exposure to scented products.

At the physical level, exposure to
these products causes me insufferable migraines, as well as nausea,
vomiting and dizziness.

At the psychological and emotional levels, I
feel debilitated and exhausted from constantly being forced into
positions where I either have to expose and justify my sensory needs, or
to educate my non-disabled peers on the concrete causes and effects of
chemically induced ‘poisoning.’ By the same token, I feel isolated as my
efforts often result in my peers labeling my sensory experience as
‘petty’ or my needs as ‘inconsequential.’

The truth is that for many
people, short-term exposure to chemical products represents a tremendous
health hazard due to low to high grades of poisoning resulting in skin
rashes, eye irritation, severe migraines, nausea, and vomiting, as well
as asthma attacks and even respiratory arrest. An array of scientific
studies demonstrates that, in most cases, the root cause of these
responses to chemical-product poisoning is primarily neurological, and
that sensory accommodations are as valid as other forms of access
accommodations.

Having said this, I argue that no amount of scientific
data should trump embodied testimonies coming from people in our various
disability communities — our sensory access needs and accommodations
are not acts of good faith or favors, they are our rights!

TPGA: What can happen to you, if you aren’t accommodated?

S.A.: Chronic
migraines are a part of my lived experience. I have lived with
migraines for as long as I can remember — all the women in my family
suffer from severe pain caused by the chronic inflammation of the
hundreds of small blood vessels in the brain.

Chemical scents and
fragrances are some of the primary triggers of migraines for me. The
root cause of my migraines is indeed neurological. In the past, denial
or delay in accommodations around my sensory needs has resulted in
prolonged migraine crises. Long-term migraines can and do disable my
executive as well as cognitive functions, causing me to miss
consecutive days of work and school. In addition, my emotional well being
is also compromised due to the feelings of extreme vulnerability and
frustration caused by consecutive days of severe pain. From a
capitalist/productivity lens, my absence cause little to no
inconvenience to an employer; from a human dignity lens, I am left to
suffer the material consequences of a social world that remains
unaccepting of our embodied experiences as valid and legitimate
manifestations of human difference.

If my coworkers/classmates
cover themselves in perfumes and colognes and or spray their offices
with air ‘fresheners,’ or attend enclosed spaces wearing scented body
lotions/deodorants without care for the concrete impact that those
products have on my overall well being, I am likely to feel (and have
felt) unwelcomed and isolated from my own work space.

If on the other
hand, my employer places obstacles and barriers to something as simple
as removing high fluorescent lighting sitting directly above my desk
(because it represents a ‘safety hazard’) while simultaneously not
allowing me to have a warm light system instead (as simple as a standing
lamp), I am left with the message that my not only my presence is
inconvenient, but also that my body is a liability.

TPGA: When you tell people about the accommodations you need, are they usually respectful?

S.A.: There
is usually a sense of complete ignorance around what accommodations
unrelated to wheelchair access (for instance) are also covered under
ADA, the Americans With Disabilities Act.  I am often addressed with questions touching on why I need those
accommodations (in terms of ‘diagnosis’ or a medically certified version
of my lived experience), as opposed to questions around how external
factors such as fluorescent lighting or scents/fragrances affect my
physical and emotional well being as a valued member of the community.

Others simply show ‘compassionate’ looks and/or words, only to return
heavily scented the next day. I can certainly attest to the lack of
care/interest/knowledge around these issues within able-bodied spaces.
And, again, way outside the realm of medical diagnosis, our embodied
experiences deserve to be valued and respected as they are and for what
they are — as we voice them.

TPGA: What are some simple ways to make more environments not just tolerable but comfortable for you?

S.A.: I
wish there was a fabulously mysterious way to simply shake my nose and
de-scent everyone as I enter public spaces — Boom, neuromagic! This is
especially so within enclosed spaces such as BART, where my experience
of discomfort is much more heightened.

I think that to bring true
acceptance around invisible experiences such as sensory sensitivities
and needs, multiple voices and perspectives need to join in the
conversation. Collective critical engagement with and action around
these issues can lead to concrete changes within the spaces that we
inhabit in our everyday. How much more could I accomplish in this fight,
if my voice were not the only one? If at each turn, someone else decided
to show up unscented to a shared space? If at each turn, someone
confronted the use of heavy scents and created mindfulness about
entering elevators, and other enclosed spaces? If at each turn, someone
would show up for people who remain quiet about their identities and
shared a bit of information about the effects of chemical products in
libraries, for instance? What would happen if we started by reflecting
on how our own individual hygiene practices can potentially affect
others in the train, on the bus, in a crowded art gallery, at the
office?

I think that ‘tolerance’ is a disingenuous way of
engaging with the magic that is difference — it limits us to think that
things ought to remain as they are, for there would otherwise be ‘chaos’–  as if there were no room for the wonderful world of the unfolding
within chaos. I think that feeling comfortable for me includes being
recognized, being validated, and being valued fully for the person that I
am.

Currently, I often continue to be received as an inconvenience
within able-bodied spaces. I am convinced that as long as the dominant
majority continues to see different forms of embodiment as a liability
or as a threat to able-bodied comfort, things won’t start shifting. I
will not feel comfortable, even if I am accommodated ‘because the law
requires it so,’ until my sensory experience is valid and accepted, as
opposed to systematically challenged and devalued.

While I
believe that policy is a necessary form of both conceptualizing and
concretizing collective struggles for inclusion, access, and full
community participation — my senses also appeal to the very radical idea
that different forms of embodiment and experiences are to be valued and
amplified without the official boundaries of social institutions — as an
act of mutual recognition and respect.