MEMORANDUM

Subject: Opportunities to make Zika prevention efforts inclusive of disability narrative

From: Smitha Gundavajhala, Jacqueline Truong and Isabella Toledo, UC Berkeley
School of Public Health
To: Director & State Public Health Officer, Karen Smith
Date: 2/13/2017

EXECUTIVE SUMMARY

Public health emergency efforts, such as epidemics, have historically overlooked the

perspective of persons with disabilities, demonizing disability as a consequence of

contracting certain diseases where applicable. Public health agencies have gone so far as

to produce HIV/AIDS materials (a similar crisis) that are not available to deaf and blind

individuals. The Zika crisis provides us with an impactful opportunity to be inclusive and

equitable in our treatment of disability in public health. This work is especially timely in

the context of federal disinvestment in upholding the ADA, and California as a state has

the agency to set a positive example. This report outlines and evaluates a few options for

doing exactly that.

THE PROBLEM

As no official Zika vaccine has been found (WHO), the primary measure to prevent the

spread of Zika is to prevent it from spreading sexually, and the primary manifestation of

Zika in infected mothers is children with microcephaly. This has led to the perpetuation

of a problematic public health practice: using the threat of microcephaly to encourage

people to make decisions to prevent the spread of Zika, or using the threat of giving birth

to a disabled child as a fearmongering practice to incentivize healthy behaviors. As it is

inconsistent for health agencies to treat microcephaly as a worst-case scenario but then

claim that children born with microcephaly to live with dignity, (Dr. Victor Pineda, UC

Berkeley) there is now an opportunity for public health efforts to heed the disability

rights movement, and to encourage reproductive justice advocates, public health and

family planning services and disability rights advocates to cooperate on this emerging

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MEMORANDUM

issue. How microcephaly is framed in the context of Zika will continue to reflect and

define public health and infectious disease works relationship with disability unless

we intervene.

GOALS

The goals of all interventions and policy options presented will be to reshape the Zika

eradication effort to be inclusive of and equitable to persons with disabilities.

CRITERIA

We are evaluating solutions to the issue stated above on the basis of three criteria: equity

(how much it supports people with disabilities, including microcephaly, to enter the

mainstream), cost (how much it will cost in order to implement the solution), and

feasibility (how likely or how soon an option is likely to be able to be implemented). We

chose these criteria because we wanted to balance a commitment to equity with the

practical, logistical aspects that allow us to realize this commitment.

POLICY ACTIONS

The options presented are based off of a combination of interviews with disability rights

advocates, professors, a pregnant mother, the Alameda County Department of Public

Healths Zika task force, and a family planning center, and online research.

Option A: Reframe Zika awareness and educational materials to be more disability-

inclusive.

Option B: Support in early childhood for children born with microcephaly (due to Zika or
otherwise).

Option C: Have family planning counselors be trained on disability inclusion.

Report: Disability-Inclusive Zika Efforts | 2

MEMORANDUM
ACTION
A: The current framing
surrounding microcephaly
and Zika, according to the
CDC website, is that the
CDC continues to study printed materials going
birth defects, such as
microcephaly, and how to
prevent them. We suggest Feasibility: It is also the
that such language is
reframed as follows:
Zika can cause can be changed with
microcephaly in babies
born to infected mothers.
While we recognize the
strain on mothers who are
unable to meet the needs of
children born with
microcephaly, we are
committed to supporting
these children and their
mothers while we work to
mitigate the spread of
Zika.
B: Reinforces ADA Title II
and IDEA provisions in
education for children
growing up with disability;
namely those that provide
access in schools. Also
provides for additional
funding for early
intervention.
http://www.parentcenterhu
BENEFITS DRAWBACKS
Cost: This is the most cost- Equity: This option has
effective of all of the symbolic benefits for equity,
options, as it only requires but does little for the actual
changes in language for all experience of those living
with microcephaly or other
forward disability, and does little to
advance the aims of the
disability rights movement.
most feasible, as the Inclusivity is a step but does
language needs only to be not in and of itself constitute
approved before materials equity and full integration.
If anything, it is a step
minimal effort. towards more mindful
public health efforts.
Equity: This is the most Cost: Upholding the ADA
comprehensive measure of in the classroom is the most
the options present. This cost-intensive, because it
measure adopts the Social involves wide-scale
Model of disability, implementation and follow-
allowing children born with up over a long period of
microcephaly to live their time (policy change is slow
lives with dignity, and and incremental)
giving them critical support
they need in their early lives Feasibility: This option is
in order to have a better also the least certain in
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MEMORANDUM

b.org/repository/ei- experience later on. terms of feasibility, mostly

overview/ due to our lack of support at
the federal level, since
newly confirmed Secretary
of Education Betsy DeVos
has not indicated that
upholding the ADA is a
priority for this
administration.

C: Require use of online Cost: The materials have Feasibility: There is

modules available via
https://www.nationalservic
e.gov/resources/disability-
inclusion. Track and
enforce compliance by
providing tax incentives
and imposing taxes upon
noncompliant centers as a
means of raising revenue to
cover some of the
administrative costs.
already been developed, so significant administrative
the only startup cost is burden associated with
associated with the tracking and enforcing
administrative burden of compliance.
tracking and enforcing
compliance.
Equity: Family planning is
a useful population-level
intervention, but family
planning as a practice has
historically used the threat
of disability as an aid in
encouraging people to make
better health decisions.

RECOMMENDATIONS

Lobbying and policy implementation efforts undertaken by the California Department of

Public Health should prioritize a combination of options A and B immediately

reframing Zika education and awareness materials while working to establish more

long-term supports for children born with microcephaly. This is, by far, the most

successful approach across equity, feasibility and cost, as it most effectively addresses the

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MEMORANDUM

hypocrisy and erasure perpetuated by public health efforts. If possible, this will be most

successful at increasing equity and inclusion of persons with disabilities when paired

with option C, as family planning services have an increased role in a Zika-concerned

state. However, family planning services may follow the narrative set by public health

agencies, so the administrative effort is least worth the cost and should only be

implemented if the symbolic language changes alone do not bring about changes in the

family planning conversation.

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