Hi, my name is Georgia Seltzer and I am a
senior politics major at Whitman College.
And I'm here to present my research on
"Assisted Autonomy" and Sexual Rights for
Individuals with Down Syndrome.
I'm really glad that I'm able to come to
you through this virtual Undergraduate
Conference, and I hope that all of us are
staying home and staying safe and
supporting each other through this hard time.
Something I've been thinking a lot
about lately is the way that this crisis
has illuminated different flaws in the
societal norms that the U.S. really
grasps onto, and what kind of
perspective shift we need to be able to
understand how we're going to heal
through and after this crisis.
Similarly, in this presentation I hope that
we can all engage in questioning our
perspectives and work to try and
destabilize a lot of normative
conceptions including autonomy,
personhood, ability and sex in the Down
syndrome context.
I argue that "assisted autonomy"
increases one's access to
sexual rights for individuals with Down
syndrome. And so we're all on the same
page, I refer to "assisted autonomy" as
one's ability to make decisions or act
with the assistance, but not force, of a
support system. So to structure my
argument, I begin by contextualizing Down
syndrome as an important case study to
provide an "assisted autonomy" lens.
A historical analysis offers insight into
the ways that those with Down syndrome
have been previously dehumanized and
denied rights and autonomy. And
accordingly, focusing on Down syndrome
specifically provides an opportunity to
increase rights to a deserving and often
overlooked group. Additionally, looking at
the different lifestyle choices made by
those with Down syndrome, we're able to
imagine a new possibility for a sexual
"assisted autonomy" in the future. I then
move to the rights framework to both
rhetorically humanize individuals with
Down syndrome and offer a framework for
which "assisted autonomy" can base
its work off of. And then lastly
I provide the concept of "assisted
autonomy" to reject the subordination and
independence-based autonomy that the
U.S. usually uses, and instead propose
my suggestions for how an "assisted
autonomy" could be used in the sexual
framework. So I focus specifically on sex
education and facilitated sex.
Down syndrome is signified by a third copy
of the 21st chromosome, and is a
developmental disability affecting the
development of social maturity, emotional
self control, social communication,
abstract thinking and problem-solving
abilities. That being said, those with
Down syndrome have higher social,
personal and emotional skills than their
communication skills, which lead to
misunderstandings of one's abilities,
especially in regards to relationships
and their ability to have relationships.
So looking at the history of Down
syndrome, it's really important to
recognize the influence of eugenics
movement in the history of treatment
towards those with Down syndrome, because
up until very recently those with Down
syndrome have been denied their
personhood and human rights.
So attempting to suggest a sexual
entitlement today really necessitates
these discussions of autonomy, humanity
and the rights associated with one's
humanity. So in 1883, laws were passed
forcing sterilization and
institutionalization of individuals with
intellectual disabilities, which was
solidified by the 1927 Supreme
Court case Buck v. Bell. And then a few
years - no, a few decades later, during
World War II, Hitler implemented his
Aktion T4 program, which ordered his
soldiers to "kill life unworthy of life,"
which included two hundred thousand
individuals with intellectual
disabilities. And then more recently
after what is seen to not entail the
eugenics movement anymore but we see a
lot of eugenic tendencies,
up until 18- or, up until 1984 doctors in
the U.S. refused under protocol,
life-saving procedures for people with
Down syndrome. And even further,
it was also up until 1984 that feeding
was categorized as a life-saving procedure.
So apparent in these eugenic
practices is the classification of "less
than human," and a lack of entitlement to
those things that are afforded to humans,
like rights or autonomy. So I now focus
on two spheres where individuals with
Down syndrome already participate in
autonomous decision-making, and also
normalize their belonging in the public
sphere. So both of these spheres -
employment and housing - help to imagine a
possible framework for sexual autonomy.
Employment for those with Down syndrome
is divided usually into two different
spheres: one is competitive employment
and the other sheltered employment.
Competitive employment is in the normal
workforce and includes long orientations
and hired employment supports. And
especially helpful in this case is the
use of the concept called "fading," in
which hired supports come to the job but
then come less and less until they're
not needed anymore. Sheltered work on the
other hand is the use of segregated
workshops,
and only hire those with intellectual
disabilities. And while having lower
wages and less room for personal growth,
sheltered employment does offer more
support, including advocacy, case management,
transportation and counseling options.
Both of these options however, show a
certain amount of competence and the
ability to be trusted for those with
Down syndrome, which are both really
important in both the employment sphere
but also in understanding of sexual autonomy.
Housing opportunities are also really
important to analyze, because they also
follow this variable amount of
support and opportunities of autonomy.
So housing consists of four general options:
privately-owned personal housing, vendor
owned, shared living and foster homes.
Personal housing is an option for higher
functioning individuals who can live on
their own with no supports. Vendor owned
is more variable and includes group
homes, community residence and congregate
housing, which can vary from 24-hour
supervision to only a few hours per week
supervision. And then shared living
spaces include an individual with Down
syndrome being paired with an
individual without Down syndrome who's
compensated to be a support system but
also allow for autonomy to flourish.
And then lastly foster homes include - are
an option for individuals who can live with
another family. Housing most specifically
offers a perspective of the variation in
the ability of those with Down syndrome,
and so the best option really depends
completely on the abilities of the
individual. So I use the rights framework
to rhetorically signify personhood for
those with Down syndrome and funnel
direct assistance. And by pairing the
rights framework with "assisted autonomy,"
it helps to address the limitations of
the rights framework: that of an assumed
equity and a lack of access. So rights as
rhetoric provides those with Down
syndrome a claim to personhood through a
claim to rights, which has really
important effects for one's self esteem.
And additionally, the same rhetoric
signifies to society that those with
Down syndrome are entitled to those
rights and are thus fully human. And then
access is addressed because the use of
"assisted autonomy" helps to bridge the
gap for options previously unattainable
for some individuals. And by promoting
sexual rights for those with Down
syndrome, there will hopefully be a
perspective shift that those with Down
syndrome desire sex, are entitled to sex
and also should be assisted in their
engagement with sex. So "assisted autonomy"
again is one's ability to make decisions
and act with the assistance, but not
force, of a support system. And in my
analysis for a sexual "assisted autonomy"
for those with Down syndrome, I propose
suggestions in the form of sex education
and facilitated sex. Sex education relies
on an education about our bodies,
relationships and sexual encounters, and
this is important for everybody but is
often - but this education is usually
provided in schools and not targeted to
those with Down syndrome. Important to
note is that sex education is far from
universal, so I'm only referring to the
schools that are providing the sex
education. So for an "assisted autonomy"
approach for sex education to work for
those with Down syndrome, there needs to
be a specific teaching style that
targets those with Down syndrome and
their learning styles. And this may
include the use of repetition, visual
graphics, storytelling, a more interactive
approach, and the use of facial
expressions. And facial expressions are
really important because sexual
interactions are often nonverbal, and so
you want to be able to practice those
skills as well. All of these teachings
should also be done at home, but in
addition a lot of different concepts
like privacy, self-worth and respect
should also be practiced at home, and
also demonstrated at home. Those with
Down syndrome are very perceptive and so
they will mimic a lot of behavior, so if
they are seeing these values being
practiced at home they're more likely to
practice them themselves in their future
decision making. Consent is another
important aspect of sex education,
and unfortunately its
definitions are really vague which make
it really hard to teach, because one must
be taught more than just that you can
say no and must stop if someone else
says no. But more than that you need to
be able to understand why we are
consenting to things and what it
actually means to consent to something.
That being said instead of disregarding
one's ability to consent and saying that
someone just doesn't have the ability to
do that, we should be working to teach
more directed and specific tools to
those with Down syndrome, to make sure
that they actually understand the
concept. And if you look to other realms
in the workforce,
if needing extra support doesn't
entail that you can't do the job
eventually, and so I think that it should
be the same for teaching consent and
other sexual activities, that we just
must learn to teach in the styles that
are the most accessible to those with
Down syndrome, and make sure that these
understandings are happening. The other
aspect of "assisted autonomy" that I
propose is facilitated sex, which
encompasses any support to one's
preparation for or the act of sex.
And this can be practiced in many different
ways and work similarly to the
employment and housing sectors, in that
every individual has varied skills and
abilities and thus their need for this
"assisted autonomy" in the facilitated sex
realm is going to be different. And I
just propose the following as options
that could be used for facilitated sex.
Health care practitioners have the
opportunity to practice "assisted
autonomy" by offering a full explanation
of birth control and reproductive health
care options so that the individual can
make their own choice of what they want
to do. And then third party supporters
can also help
in an assistant autonomy approach
through physical and emotional support.
Physical support is already practiced
for people with physical disabilities
currently, and that includes things like
undressing, positioning and physically
moving people for sex, but emotional
support has yet to be used very widely.
So I suggest that that gets included in
the use of facilitated sex, which would
include helping someone access birth
control, finding social spaces
to meet partners
and facilitating consent. So consent
facilitators are there to assume the
consent ability of the members engaging
in their sexual interaction, but all
the while clarifying the stakes of what
the action entails and making sure that
consent was given before an action, and
then they leave before any actions
actually occur. I also suggest that the
use of fading that we discussed in the
employment section can be used here as
well, as consent facilitators can be used
less and less over time. Lastly, sex
surrogacy provides a unique opportunity
to enforce the sexual rights of those
with Down syndrome. And the aim of the
sex surrogate is to nurture a person's
sexuality and to help them gain
self-esteem, sexual health and confidence.
This may involve everything from
touching to sexual intercourse. Sexual
surrogates undergo a formal training for
the job, including ways to help sexual
dysfunction and overcome sexual fear.
One change I would make to the current
sexual surrogacy approach is the use of
a progress narrative. Currently one uses
a sexual surrogate to work through
dysfunction or a fear, and however I
propose that the use of a surrogate be
used as a service that one pays for and
does not have to have a time limit or
any type of futuristic goal. And the only
reason I really use the word surrogate
rather than prostitute, is
I think it's important the surrogates
have a certain amount of training for
how to communicate best with those with
Down syndrome before engaging in sexual
interactions. This can also be compared
back to the shared living spaces
described in the housing section where a
person without Down syndrome is
compensated to be a support system for
the individual with Down syndrome, while
also creating an opportunity for their
autonomy to flourish. So in conclusion
the history of maltreatment toward those
with Down syndrome marks a shameful
dehumanization of deserving and capable
individuals. While "assisted autonomy" for
Down syndrome sexuality may look
different than how our norms have
constructed images of autonomy, ability
and sex, we must learn how to shift our
perspective to understand Down syndrome
ability rather than disability, and find
ways that we can shift structures and
expectations to better support the
rights they're entitled to.
As Michael Warner says, you learn that
everyone deviates from the norm in
some context or other, and that the
statistical norm has no moral value.
Thank you for listening, and feel free to
reach out if you have any questions.
