Savannah Nast - Positive Women of the World: PWOW

This book was created in Tkaronto, which is a Kanienkha word meaning where there are trees in water, and on the historical territory of the Huron-Wendat, Petun, Seneca, and most recently, the Mississaugas of the Credit First Nation.

This territory is covered by the Dish with One Spoon Wampum Belt Covenant, an agreement between the Haudenosaunee and the Anishinaabe and allied nations to peaceably share and care for the lands and resources around the Great Lakes.

Some language used by the interviewees could be harmful or may have changed and evolved by the time of publication. It is important to this project that the women used their own language to describe their own experiences. Language is ever evolving. It is important to learn about harmful language that could increase stigma, and to change our vocabularies to be safer for the people around us.

Use terms like:

• Person living with HIV (not HIV-infected or AIDS patient). Use person-first language to help remove the stigma. Person or people living with HIV emphasizes life.
• Disabled (not special needs or handicapped).
• Sex worker (not prostitute); sex work is a profession.
• Sober (not clean); people who use substances are not dirty.
• Vertical or perinatal transmission (not mother-to-child transmissions). This former term perpetuates cis-normative language and blames the parent.

Continue to learn about other ways you can change your language to be more inclusive. It is an excellent way to be an ally and unlearn harmful language.

Women is an umbrella term, it includes trans and cis women, Two-Spirit, and femme folks.

HIV is short for Human Immunodeficiency Virus. HIV is different from AIDS, which stands for Acquired Immune Deficiency Syndrome. HIV can become AIDS when HIV goes untreated for a long period of time. Not everyone who has HIV will develop AIDS, and in the present day, very few people living with HIV will ever develop AIDS.

There are treatments for HIV in the form of antiretroviral drugs, which allow people living with HIV to remain healthy and have a typical life expectancy. The earlier you know your HIV status, the better.

There are four ways HIV can be passed on.

1. Having insertive sex either with your anus, vagina, or frontal hole with someone who is HIV-positive with a detectable viral load.

2. Sharing drug/substance gear, such as needles or syringes, with someone who is HIV-positive with a detectable viral load.

3. Giving birth while living with HIV and not being on treatment.

4. Through breast or chest feeding.

There are five fluids that can transmit HIV: they are semen, vaginal fluids (including menstrual fluids), rectal fluids, breast/chest milk, and blood.

HIV is a fragile virus, and it cannot survive outside of the body. You cannot be infected with HIV from toilet seats, sharing dishes, or food. HIV is not passed through the air, and you cannot get HIV from kissing or sharing a drink.

In many of the interviews, women mention CD4 count or CD4 cells. CD4 cells, also known as CD4+ T cells, are white blood cells that fight infections. CD4 cell count is an indicator of immune function in people living with HIV. A normal CD4 count is from 500 to 1,400 cells per cubic millimetre of blood. At levels below 200 cells per cubic millimetre, patients are at a greater risk for opportunistic infections, which can lead to someone developing AIDS.

For more information:

https://www.actoronto.org/health-information/hiv

You may have heard of the U=U campaign, where an undetectable viral load means you cannot transmit

It is important to note that not everyone living with HIV can reach an undetectable status. There can be challenges accessing HIV medication, and some people on HIV medications can still not reach an undetectable status. Additionally, an undetectable viral load in the blood does not necessarily mean a person has an undetectable viral load in their breast and chest milk. It is also important that breast and chest milk for infant feeding are often not included when discussing U=U. As this is a book about HIV-positive women, this gap in the U=U movement is important to mention. With this in mind, U=U messaging has not generally been extended to include infant feeding: more research is needed.

For more information:

https://www.catie.ca/resource/understanding-uu-for-women-living-with-hiv-icaso-community-brief

ACB African, Caribbean, and Black

ACT AIDS Committee of Toronto

ADHD attention deficit hyperactivity disorder

AGM annual general meeting

AIDS autoimmune deficiency syndrome

APAA Africans in Partnership Against AIDS

ART antiretroviral therapy

ASO AIDS Service Organization

BA Bachelor of Arts Degree

BC British Columbia, a province in Canada

BIPOC Black, Indigenous, and People of Colour

Black CAP The Black Coalition for AIDS Prevention

CAMH Centre for Addiction and Mental Health

CAYR the AIDS Committee of York Region, now known as CAYR Community Connections

CBSA Canadian Border Services Agency, border patrol/border services officers

CEO chief executive officer

COPD chronic obstructive pulmonary disease

CS Caesarean section, C-section

CD4 CD4 cells, also known as T cells, are white blood cells that fight infections

CMHA Canadian Mental Health Association

DC District of Columbia; Washington, DC

EDD estimated delivery date (regarding giving birth)

HALCO HIV & AIDS Legal Clinic Ontario

HIV Human Immunodeficiency Virus

HPV Human Papilloma Virus

IBS irritable bowel syndrome

IQ intelligence quotient

ITP immune thrombocytopenic purpura, a blood disorder characterized by a decrease in the number of platelets in the blood

LGBT Lesbian, Gay, Bisexual Trans

LGBTQ2S+ Lesbian, Gay, Bisexual, Trans, Queer, Two-Spirit, plus

LGBTQIA+ Lesbian, Gay, Bisexual, Trans, Queer, Intersex, Asexual, plus

MA Master of Arts Degree

MAC Mycobacterium avium complex

MIG welding Metal Inert Gas welding

MP member of parliament

MRI magnetic resonance imaging, medical imaging technique used to create detailed images of the organs and tissues in your body

OAN Ontario AIDS Network

ODSP Ontario Disability Support Program

OHIP Ontario Health Insurance Plan

OW Ontario Works, Ontario financial assistance program

PHAC Public Health Agency of Canada

PLDI Positive Leadership Development Institute

POOF Protecting ODSP and OW Funding

PMTCT Prevention of Mother-to-Child Transmission

PSW peer support worker or personal support worker

PTSD Post Traumatic Stress Disorder

PWA Toronto People with AIDS Foundation

PWOW Positive Women of the World (this book/project)

PYO Positive Youth Outreach, a youth group at ACT

RPN Registered Practical Nurse

REM rapid eye movement, the deepest stage of sleep

SAD seasonal affective disorder

STI sexually transmitted infection (previously/commonly referred to as STD, sexually transmitted disease)

• STD is an outdated term; the term disease is inaccurate and increases stigma of sexual health. Please use STI instead.