PleasePrEPMe Language and Content Guide


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Last updated August 2020.

Through language we transform reality. We dictate what is real. This creates an enormous responsibility to use language to describe and create the best, most radical reality we can imagine—a world free from violence in all its forms; a world where all life, all identities and experiences, and all ways of making meaning are understood as valuable and sacred. Language can hurt or heal; it can cause harm or create liberation—the choice is ours. The Radical Copyeditor

What We’ve Learned About Writing For and About People

PleasePrEPMe’s language reflects our values as an organization by respecting and honoring the bodies, experiences, and choices of all the people we serve. The following guidelines are just that—not unbreakable rules but evolving guidelines for writing with care, empathy, curiosity, and humility.

Person-first language

As a general rule, use person-first language to acknowledge that people and communities are more than their HIV status, their substance use, etc.

  • Use: People living with HIV
  • Avoid: HIV-positive people, HIV-infected people, HIV patients

 

  • Use: Person who uses drugs, people who inject drugs
  • Avoid: Drug users, injection drug users

 

That said, people-first language is not always the best choice. For example, replacing the phrase “sex workers” with “people who exchange sex for money” puts the people first, but it may not reflect their experience and the language they use to describe themselves.

Pay attention to the ways people and communities refer to themselves—and how they prefer to be described by people outside their community—and stay curious about how that language changes over time.

Creating antiracist content

Decolonize Stories—Seek, learn, share and affirm the distinct histories of BIPOC [Black, Indigenous, and People of Color] communities; and unlearn dominant narratives.
The BIPOC Project

. . . [R]ace is not a risk factor for disease, but a proxy for the risk conferred by exposure to racism and structural inequity. Race represents a social determinant of health; it does not signal genetic predisposition to disease.
Anti Racism for Medical Educators

Creating antiracist content for websites, social media, and print is a way to challenge racism as a social determinant of health, including sexual health. Consider the following guidelines in developing or updating content:

Language

  • Use community-preferred terms, such as BIPOC (Black, Indigenous, and People of Color), Black (capitalized), and Latinx. Language evolves, and preferred terms may vary geographically. Be sure to confirm the terms you use are up to date and preferred by the communities you’re writing for and about. See also “Selected Definitions and Preferred Terms,” below.
  • Contextualize race: Include the context of racism as a social determinant of health when discussing the impact of HIV on BIPOC and BIPOC communities, and include the context of historical and structural racism in discussions of racial inequity.
  • Practice cultural humility, staying curious and showing respect for cultural contexts and practices.
  • Respect and retain the speaker’s voice, vernacular, and tone in quotes and first-person stories, such as blog posts.

 

Imagery

  • Use respectful images that center BIPOC joy and power.
  • Make sure BIPOC are not shown consistently in positions of less power, such as frontline staff or patients interacting with white clinicians.
  • Pay close attention to how images frame BIPOC. For example, feedback received during development of HIVE brochures in 2019 noted that pregnant white women are often shown with partners while pregnant Black women are shown alone.

 

See “Sources and Tools,” below, for readings, definitions, and other resources for practicing antiracism and de-centering whiteness. “Beyond Terminology: Zooming Out to Focus on Bias,” by Karen Yin, is especially helpful.

Inclusive, gender-affirming language

“Sex” and “gender” are not the same thing, and there is power in using language that distinguishes between them:

  • Sex is the classification of a person as male or female. At birth, infants are assigned a sex by the attending clinician, usually based on the appearance of their external anatomy and based on the use of a binary system (“female” or “male”).
  • Gender identity is a person's internal, deeply held sense of their own gender. 
  • Gender expression is how a person shows the world their gender, expressed through their name, pronouns, clothing, behavior, voice, hairstyle, and/or body characteristics that society associates with specific genders.
  • Gender is the complex interrelationship between gender identity, gender expression, and the body—how we experience our own body and how others interact with us based on our body.

 

To keep language inclusive and gender-neutral, use singular “they” as a pronoun wherever possible:

  • Use: If your partner has an undetectable viral load on treatment for at least six months, they cannot transmit HIV through sex.
  • Avoid: If your partner has an undetectable viral load on treatment for at least six months, he cannot transmit HIV through sex.

 

As appropriate, aim for gender-neutral language when discussing fertility, conception, or birth control:

  • Use: Ovulation is the most fertile time for people whose bodies make eggs.
  • Avoid: Ovulation is the most fertile time for women.

Affirming language about transgender people

“Transgender” means having a gender identity that does not align (according to societal expectations) with the sex designated at birth. “Cisgender” means having a gender identity that does align with birth-assigned sex.

“Transgender” is an adjective, not a noun:

  • Use: transgender people
  • Avoid: transgender
  • Never: transgendered

 

Unless writing about trans women or trans men specifically, use language that is inclusive of nonbinary-identified transgender people:

  • people of transgender experience
  • transgender people
  • people of all genders

 

Avoid referring to “people who identify as transgender” as a blanket description for trans people. A transgender person may identify as trans, or may identify as a woman, a man, or another gender.

Use the shorter, more casual “trans” as a stand-alone adjective rather than a prefix, to affirm that trans women are women and trans men are men.

  • Use: trans woman, trans man; trans women, trans men
  • Avoid: transwoman, transman; transwomen, transmen

 

“Transgender” is not a sexual orientation. People of transgender experience may identify as straight, gay, lesbian, bisexual, asexual, pansexual, etc.

Use language that respects a person’s gender identity rather than emphasizes the sex they were assigned at birth:

  • Use: designated female at birth; assigned male at birth 
  • Avoid: born a woman; born a man; biologically female; biologically male; genetically female; genetically male

 

Always use a person’s correct pronouns (and avoid calling pronouns “preferred”). “They” as a singular pronoun is gaining mainstream recognition (and is accepted in Merriam-Webster and American Heritage Dictionary!) but there are plenty of others:

  • Sean presented their data. 
  • Avery is zir organization’s most senior staff member.
  • Nadine shared gher slides with the group. 
  • I followed up with Rae about hir questions.

 

When using singular “they,” follow the same rules as for singular “you”:

  • they did, they are, themself/you did, you are, yourself

 

See “The Radical Copyeditor’s Style Guide for Writing about Transgender People” for more discussion of evolving language related to transgender people.

Here are some additional examples of inclusive and affirming language about people:

Use Avoid

client, visitor

patient

condomless sex; sex without condoms, PrEP, or TasP

unprotected sex

gay (adjective) or lesbian (adjective or noun)

homosexual (may be experienced as an outdated clinical term)

people affected by HIV, populations affected by HIV

high-risk people, high-risk populations

people experiencing homelessness

homeless people, the homeless

person living with HIV

HIV-positive person, HIV-infected person

person who injects drugs

injection drug user

prioritize, tailor to

target

sexual orientation

sexual preference

sex worker

prostitute

 

Writing in Plain Language: A Tool for Health Equity

Plain language writing helps readers find information and understand it as quickly and easily as possible so they can use it to meet their needs. In this way, plain language writing promotes health equity. Here are the basics:

Know your audience. Understand who your intended readers are, and use language that is familiar and comfortable to them.

Start with the most important information. Think about what info your reader is most likely looking for, and organize your material accordingly. Include any background information (if needed) toward the end.

Address the reader directly, as appropriate, to help make the information meaningful and relatable to your reader. For example:

  • For clients: “You can use PrEP by itself or with other HIV prevention tools.” 
  • For providers: “Your clients may have questions about PrEP and hormones.”

 

Use active voice whenever possible. Active voice is usually more clear, concise, and direct than passive voice. For example:

  • “The use of PrEP is safe during breastfeeding.” → “People can safely use PrEP while breastfeeding.”
  • “is protective” → “protects”

 

Keep it short. Express one idea per sentence and cover one topic per paragraph. Shorter, simpler sentences and paragraphs can help break up complex information and make it easier to understand.

Simplify phrases whenever possible, and use words with fewer syllables. For example:

  • “due to the fact that” → “because” 
  • “in order to” → “to”

 

Keep the subject, verb, and object close together to make the sentence easier to follow. For example:

  • Use: “PrEP helps prevent HIV when taken as prescribed.” 
  • Avoid: “PrEP, when taken as prescribed, helps prevent HIV.”

 

Use positive language. Positive language is clear and empowering! For example:

  • Use: “Remember to refill your prescription so you have a steady supply of PrEP.”
  • Avoid: “Don’t forget to refill your prescription or you might run out of PrEP.”

 

Use plenty of headings to show how your material is organized and help direct readers to the info they need. Write descriptive headings that are meaningful to the reader. Avoid writing headings as an outline that only you understand.

Use lists (rather than long sentences) to help readers understand requirements or steps in a process. Keep lists to seven or fewer bullets to improve retention.

You can find many more guidelines for writing, designing, and testing materials for readability at PlainLanguage.gov/guidelines.

Create Content in Languages Spoken by the People You Serve

As much as is possible, involve content experts who are fluent in the languages of your audiences from the beginning. This approach can yield more comprehensible and relevant content, rather than a direct translation.

Try to use translators who are well versed in your subject area. For example, translators with medical knowledge may be able to both translate and improve clinical content. If possible, make time and funds available for a translator and separate proofreader. In general, you pay translators by the number of words in the translated content, not the original word count in English.

Involve translations as early in the process as possible, and be aware of language rules in considering layouts. (Translating from English to Spanish expands word counts by 125% or more, for example.)

Include translated content in outreach and communications, social media posts, and advertising.

Using consistent language across your channels reinforces messaging about HIV prevention and sexual health, and helps readers understand the services and resources available to them. Here are some common terms and phrases used in discussing HIV, HIV prevention, and health care.

ABC

 

  • AIDS, not AIDS virus (AIDS is a diagnosis and cannot be transmitted) 
  • BIPOC (Black, Indigenous, and People of Color) 
  • Black (capitalized), not black 
  • client, not patient 
  • compared with (used to illustrate similarities or differences), vs. compared to (used more rarely, to strongly assert that two things are similar) 
  • condomless sex, not unprotected sex

DEF

 

  • Descovy PrEP 
  • external (“male”) condoms

GHI

 

  • health care, not healthcare
  • HIV, not HIV virus 
  • internal (“female”) condoms 
  • internet, not Internet

JKL

 

  •  Latinx, Latina, Latino, not Hispanic (except where the latter is community preferred)
  • living with HIV, not HIV positive or HIV infected

MNO

  • Medi-Cal

PQR

  • post-exposure prophylaxis
  • pre-exposure prophylaxis 
  • PrEP, not PREP

STU

  • sex partners, not sexual partners 
  • sexually transmitted infection (STI), not sexually transmitted disease (STD) 
  • transgender, not transgendered 
  • Truvada PrEP

VWXYZ

  • website, not web site, Web site, or Website

Creating Accessible Content

Creating 508-compliant/accessible content helps meet the needs of people with a range of disabilities—visible and invisible. A plan for creating accessible content should be baked into project development from the start, both to ensure accessibility for all users and because it is easier to implement that way.

The Web Content Accessibility Guidelines are the definitive resource, but PleasePrEPMe’s top tips include:

  • Add descriptive alt text to images that support or further explain the content. Avoid using simply decorative images where possible. Don’t use “image of...” in alt text, as screen readers already indicate this when they encounter image files. 
  • Hyperlinked text should describe the link. For example: 
  • Use heading formatting tools (starting with H1, then moving through H2, H3, etc.) instead putting headings in bold, to help screen readers navigate your document or site. 
  • Ensure all content is easily accessible and navigable using keyboard functions, such as the “tab” key. See the keyboard accessibility tips from WebAIM to learn more. 
  • Evaluate color contrast on websites to ensure content is legible to people with various sight abilities. The Web Accessibility Initiative has more info on color contrast and links to color contrast checkers you can use to evaluate your site.

Ask for Feedback, and Pay for It

Prioritize time and funds to gather and pay for feedback from your intended audience when developing or updating projects and content. Gathering, listening to, and paying for input and feedback helps ensure what we create aligns with the needs and priorities of the people we serve and values their time, labor, expertise, and lived experience.

For example, we piloted the PleasePrEPMe navigation training with 23 navigators, frontline staff, and other non-clinical staff at health departments and community organizations across the United States. Pilot participants weighed in on the format, length, and content of each module, and each received a $100 stipend. Their candid assessment showed us where we were on track and what gaps to address in our course content.