As a Black, non-binary femme who, while pregnant, intended to raise a “gender creative” child after birth, many of my concerns as a parent-to-be weren’t—not surprising, but disheartening nonetheless—addressed in the traditional parenting books I read about, was gifted or purchased.

I had countless romanticized ideas about the experience of pregnancy combined with feelings of paranoia regarding things that could go wrong, anxiety about how I’d cope with the upcoming changes while in recovery for an eating disorder, and general curiosity about what it meant to be pregnant. Due to health reasons, I’d been warned by doctors that my pregnancy would be high-risk and I had to take special precautions to ensure that myself and the baby would be healthy and safe.

Given the alarming statistics and data regarding Black maternal health in the U.S. (according to the CDC, Black woman are three to four times more likely than non-Hispanic white women to die as a result of giving birth as just one concern), I was riddled with worry at the potential for problems. Thankfully, I had a solid support system primarily in the form of an understanding and loving partner who supported me fully. Still, I hoped to find a sense of community or even a small village of people who could relate to my journey as a pregnant person and soon-to-be mom.

I started my pregnancy on Medicaid, enrolled in my final semester of undergraduate studies as a returning student, battling hyperemesis gravidarum—a severe form of vomiting and nausea vomiting—and hoping to have a doula-assisted home water birth. Fast forward eight months to an unexpected hospital birth, after over a day of excruciating but lovingly-supported labor at home, and an earlier-than-planned transition into motherhood.

Despite the last minute drastic changes to my birth plan, any sense of preparedness I had while birthing—and upon returning home with my newborn—was fostered and instilled in me not by any of the conventional pregnancy and parenting books I eagerly devoured early on in my pregnancy, but by a source not available to most prior generations of parents: social media-based forums and pages. I was gifted so many books and out of curiosity and fear of the unknown I read each one cover-to-cover.

I mostly read them with my future doula work in mind, gathering tools and information I could possibly need given the diversity of possible clients in my area. For me personally, though, the book just didn’t help for my unique journey as much as I hoped they would. They lacked the intersectional analyses of different issued related to pregnancy and birth I longed for.

During my pregnancy I experienced racism at my OB office at nearly every visit; I finally stopped going around 35 weeks. Each time I went I wished I had the confidence to advocate for myself and my child. Thankfully, my partner and I were honest and open with each other every step of the way so during moments of stress he would support me. Further, he would respectfully advocate for me if I was on the verge of a breakdown.

The levels of discomfort felt by my partner and I subsequently lead to crippling anxiety. Primarily for me. We would unpack the visits together because the racism we experienced was blatant but we decided to hang in there for as long as possible given the risks of my pregnancy. When we did stop going, though, if we needed help we sought the help of midwives, doulas, and nurse relatives for guidance. As a doula myself, I felt confident in my ability to seek the help of a new doctor if need be or to find other forms of professional, medical help.

Racism During Prenatal Visits isn’t a topic covered in any of the popular pregnancy books so I scoured the internet for people who could relate beyond peer-reviewed articles and academic texts about the intersections between institutional racism and the medical industrial complex. Sure I read those as well, but I wanted personal stories and honest narratives written by other pregnant people with relatable transparency.

There were other issues I yearned to talk with other pregnant people that the popular texts simply didn’t begin to broach: dealing with misgendering as a non-binary femme, choosing a parenting style that no one else in your family takes seriously or will most likely criticize, opting to raise gender creative children, planning for a home water birth with a doula in New York City, coping with body image issues as someone in recovery from bulimia, issues regarding receiving different physical exams during pregnancy as a survivor of sexual assault and rape, addressing intergenerational trauma as a soon-to-be Black mother. The list went on and on (and on) but luckily I eventually found exactly what I was looking for.

About halfway through my pregnancy I saw a shared post on Facebook that led me to a private group for pregnant people suffering from hyperemesis gravidarum. This was the first space I felt I could be open and honest about my experiences because the thousands of other people in the group could genuinely relate to me and I didn’t have to worry about suggestions for ginger or crackers. They, too, knew the struggle of wanting to take just a sip of water only to have your body reject it. Not eating for days, vomiting more than ten times a day, emergency room visits.

There were other issues I yearned to talk with other pregnant people that the popular texts simply didn’t begin to broach like theintergenerational trauma as a soon-to-be Black mother.
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Having found a sense of real community and understanding in that group I began to search for more solace, more solidarity. In time I was a member of about ten different groups that focused on the issues I was dealing with. I would discuss different topics everyday and eventually I made close bonds with people around the world by becoming friends on Facebook, texting, and following each other’s journeys on Instagram. Everything I couldn’t find and would never find in traditional parenting books I found online at all hours of the day.

Something that most traditional parenting books leave out are the effects that structural, institutional, and systemic forces have on lived experiences. Race, class, gender (or the lack thereof), nation of origin, disability, sexual orientation, region, and so much more impact our lives in ways that make experiences like pregnancy and childbirth truly unique.

Our bodies alone, and their differences and histories, make pregnancy and childbirth a unique experience, but so do things like the food we have access to, the way we are perceived by others, the type of insurance we have (if we have insurance at all) whether or not we work, whether or not we have a partner or partners, implicit biases medical professionals have toward us based on our race—there is so much silenced and overlooked.

But thanks to the internet, there are online spaces for people with shared experiences to connect, bond, and offer each other support. I’m thankful I found those spaces because they made my journey feel less helpless and made me feel less alone. I didn’t feel silent, I felt understood. My experience wasn’t erased. I, and thousands of others, could be seen and heard in those spaces.

Those spaces helped me see that for some pregnant people and parents, or people considering starting that journey, the most helpful guides to turn to for advice, useful information, and necessary guidance won’t be found on your local bookstore shelf (or online shopping cart). Instead, it’ll be found on social media, most likely Instagram or Facebook. And while we all navigate these journeys in our own way, if you’re like me and enjoy a sense of community with others who genuinely understand you, then I highly recommend you find an online space you consider safe.

Our bodies alone — their differences and histories, make pregnancy and childbirth a unique experience and there is so much silenced and overlooked.
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Sometimes you can’t always turn to family and sometimes the books won’t have answers to your questions. If you go into these spaces knowing you can learn, as a supplement to whatever level of professional and medical advice from doctors or other specialists you seek out, then your journey as a pregnant person or parent can be deeply enlightened and maybe, just maybe, less stressful.

It’s comforting to know that you’re not alone and it’s empowering to feel affirmed. Online communities offer that and I’m grateful I found them during such a major transitional and transformative time of my life.

“Everywhere I look, Lord / I see FB eyes / Said every place I look, Lord / I find FB eyes / and I’m getting sick and tired of gover’ment spies” — Richard Wright, “FB Eye Blues” (1949)

In an August 1967 document, former director J. Edgar Hoover described the purpose of the FBI’s COINTELPro program: “to expose, disrupt, misdirect, discredit, or otherwise neutralize the activities of black nationalist, hate-type organizations and groupings, their leadership, spokesmen, membership, and supporters, and to counter their propensity for violence and civil disorder.” A full 22 years before the Citizens’ Commission to Investigate the FBI would break into the bureau’s Media, Pennsylvania office and unlock COINTELPro’s secrets, Wright lamented the reality of what was becoming a staple condition in everyday Black life: government surveillance.

Although Wright’s poem discussed “FB eyes” lurking underneath his bed, the introduction of a digital age has helped usher in a shift of what surveillance entails. Stories like Amazon giving facial recognition tools to law enforcement agencies in Oregon and Orlando, and a Black activist being jailed for his Facebook statuses, help to highlight surveillance’s new adaptability, both as a culture and an institution. However, our modern surveillance culture has the worst ramifications for Black Muslims.

Black Muslims are used to being surveilled, and the knowledge that somehow you are being watched has found an uncomfortable, yet sometimes distant, residence in the Black Muslim’s mind. This distance allows for new surveillance methods to grow right beneath the feet of Black Muslims, trapping them where they stand before they even have a chance to move. It provides people with almost a false sense of calm that transforms itself into lowered security.

That mission to expose, disrupt, misdirect, and discredit the activities of Black movements, whatever their nature, has shaped the lives of Black people in America before the name surveillance was assigned to it. But for Black Muslims, the discussion of surveillance is similarly evergreen, and even more pronounced. Black Muslims have been singled out as threats, long before things like the development of the Obama administration’s Countering Violent Extremism program (an entrapment program that piloted in Minneapolis targeting Somali Muslim youth) or the Trump administration’s Muslim Ban. Tracing the position of Black Muslims through America’s history helps illustrate not only how elegantly surveillance can adjust itself with the times, but what that entails for the digital landscape Black Muslims navigate today.

Black Muslims are used to being surveilled.
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Perhaps one of the biggest concerns facing Black Muslims is the ways in which current discourse erases the anti-Black roots of America’s Islamophobia. By ignoring how surveillance draws from policing enslaved African Muslims, Black Muslims are left ignored. Black and Muslim are viewed as two identities, instead of one whole that has always been cast as a threat to the American public.

Some of the earliest examples of the American government surveying Black people, with the intention of disrupting culture and movements for liberation, can be tracked throughout slavery. Although the period is not commonly conjured when Big Brother’s name is invoked, it’s important to trace institutions back to their earliest manifestations. During slavery, Islam had a significant presence; the estimate is that 15 to 30%, or as many as 600,000 to 1.2 million, slaves in antebellum America were Muslim. And often, they were the ones being watched the most.

Within North America, prohibitions based on observances of Islam helped lay the roots for early manifestations of surveillance of Black Muslims. In efforts subtly influenced by tales of African Muslim revolts in Spain’s South American colonies, and an overall effort to control the religion of a people in order to conquer their spirit, American plantations cracked down on Islam among enslaved people. Documents from Sea Island, Georgia, known as the Ben Ali diary, detailed the ways enslaved African Muslims navigated observing their religion under constant watch. There are records of Muslims observing Ramadan, the month of fasting, which includes gathering to break meals and hold nightly prayers. But, for instance, in the Virginia Slave Code of 1723, the assembly of five slaves was considered an unlawful meeting; every state throughout the south had their own versions of this law, to put an end to religious practices and any hopes for rebellion.

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Although laws forbidding gatherings of enslaved people did not specify Islam, the setup of religion throughout chattel slavery positioned Islam and Christianity at odds. Enslaved Africans were allowed to occasionally gather for the purpose of Christian ceremonies and attending worship. Religion existed as a tool to further control and surveil enslaved people. Plantation owners were unable to manipulate Islam, but their familiarity with Christianity presented them with unique opportunities.

The majority of enslaved Muslims were forced to convert to Christianity. But, for some, Christianity presented new avenues for their own, individual freedom. The National Museum of African American History and Culture notes how some enslaved Muslims, such as Lamina Kebe, pretended to become Christians in order to earn safe passage back to Africa under the guise of performing missionary work.

Targeting visible tenants of faith like dietary restrictions and prayer gave way to an early model of surveillance that continues to feed into the surveillance of Black Muslims today. Although that early method did not occur through FB eyes, the intention was the same. More than anything, COINTELPro existed to paint liberation movements as backwards, savage, and threats to the supposed moral superiority of the United States. Attempts to forcefully convert enslaved people or to otherwise stifle Islam arose from similar beliefs.

Targeting visible tenants of faith gave way to an early model of surveillance that continues to feed into the surveillance of Black Muslims today.
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Now, though, surveillance methods have evolved with the times. “FB eyes” don’t need to linger under your bed when your laptops and phones sit prettily on top of it, after all. In political organizing, it’s standard practice to keep all electronic devices, particularly those with microphones, out of meeting spaces; but what about the times we forget that we can be watched? Agencies can infiltrate organizations today, like in the case of the Black Panthers and William O’Neal, but there’s now the assistance of greater technology. While there’s no need to immediately fear tech improvements, there does need to be more discussion about how a digital age has impacted surveillance, particularly for Black Muslims who sit at a heavily targeted intersection.

In 2008, the Combating Terrorism Center echoed this fear with their release of an article titled “Evaluating the Terrorist Threat Posed by African American Muslim Groups.” Although the article in question is now 10 years old, it’s clear that the fear of Black Muslims is still deeply embedded into the American psyche. COINTELPro in the past targeted proto-Islamic institutions like the Nation of Islam. With the release of The Hate That Hate Produced, a 1958 documentary focusing on Black nationalism, Black Muslims gained now spotlight within the media. Black Muslims, as both a religious and political identity, were portrayed as a domestic threat.

It was fear around Black Muslims that dominated discussions. While some of the visibility would later be turned onto non-Black Muslims, that unease around the Black, the unknown, and the uncontrolled has never faded. Black Muslims were seen within their own politicized identity that the state perceived as one of the greatest threats of the time. An FBI report on the Nation of Islam described the group as promoting “fearless and outspoken anti-white, anti-Christian attitudes…As long as racial inequity continues, the militant and arrogant manner of cult members remains a potential threat of violent action.”

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There, it can be seen how the state already formed the idea that Muslims would equal violent action of some kind. That fear was not only rooted in their Muslim identity, but equally promoted by their Blackness.

In October of 2017, a situation reminiscent of the COINTELPro spill occured: An FBI report warning of a domestic terror threat sweeping across the nation emerged. The threat? Black Identity Extremists. And while the concept of Black Identity Extremists, and thus the surveillance of activists, is not new, it’s important to note how social media is used as a method of surveillance within it.

In February of 2018, the ACLU gathered documents which revealed “the Boston Police Department’s Regional Intelligence Center used a social media surveillance system called Geofeedia to conduct online surveillance in 2014, 2015, and 2016.” The BDP used Geofeedia to monitor hashtags like #BlackLivesMatter and words associated with political action, such as protest. In addition, the BDP monitored the use of various, basic Arabic words and the hashtag #MuslimLivesMatter.

Immediately after 9/11, the New York Police Department’s Intelligence Division created a secret spy division to spy on American Muslims in New York City and the surrounding area. Known as the Demographics Unit, they spied on residential, social, and business landscapes. Of the 28 “ancestries of interests” included, American Black Muslims were featured on the list. According to Black Perspectives, NYPD documents revealed that the NYPD Demographics Unit spied on Black mosque attendants and Black imams throughout New York and New Jersey. Methods of surveillance within the Demographics Unit were varied, given the numerous aspects of Muslim life being investigated. But, they included NYPD officers taking pictures and videos of people leaving and entering the mosques and recording the license plate numbers of worshippers attending services. NYPD also operated remotely controlled cameras on light poles aimed at mosques.

Noted as borrowing from the NYPD’s Demographics Unit, the Countering Violent Extremism program launched in Minneapolis and targeted Somali Muslim youth. The program notes the importance of digital surveillance within identifying signs of extremism. “Digital marketing experts have a sophisticated set of tools and methodologies that are proven to work,” writes a Department of Homeland Security document, “such as discovering a range of relevant information, creating, branding and marketing compelling content, and tracking real-world metrics to identify the most effective content for further distribution.”

These various methods of digital surveillance highlight the dangers of being Black and Muslim within digital space. Black Muslims do not simply face the consequences of anti-Blackness and Islamophobia, but they deal with a particular manifestation of the two that works as a single unit. Understanding anti-Black Islamophobia as its own form of violence allows for discourse to broaden itself, without falling into traps such as those painting Muslims as recently racialized victims of surveillance, when the beginnings of surveillance existed with the racialization of enslaved African Muslims.

“I am America. I am the part you won’t recognize. But get used to me. Black, confident, cocky; my name, not yours; my religion, not yours; my goals, my own; get used to me,” Muhammad Ali once said, a direct confrontation to America’s fear of Black Muslims, the unknown and uncontained. America has long feared Black Muslims, and has attempted to allay that fear by keeping close watch. Moving forward, understanding surveillance requires the conversation to focus on digital justice and keeping in mind how the internet serves as a new playground for “FB eyes” to explore.

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I am a black disabled woman. Those six words convey the essence of who I am — not all that I am, but the lens through which I navigate the world. I am black, and I am disabled. But often, these intersecting identities make me twice as much of an outsider.

I was raised by a single mother, who treated my older brother, able-bodied twin sister, and me as equals. Every bike, pair of roller skates, or scooter that they received, I got one too. I grew up shielded from the eyes of strangers and blissfully unaware of the reality of the world. In fact, I genuinely did not know that I was disabled until I reached middle school, when a boy mocked the way I walked across the cafeteria. Up until that moment, I had lived like I was able-bodied, and never considered that my walk was different than anyone else’s. I had never looked in the mirror and seen something or someone I didn’t like.

There was no going back to that bliss, though. The teasing made me painfully aware of my disability; I knew who I was now, and I didn’t like her. I spent middle school and high school trying desperately to take up less space and draw as little attention to myself as possible.

In college, I made friends who never used my body as a punchline, who saw me for the things that I took pride in showing and entrusting them with. My college years were spent unlearning my self-hatred and growing into a version of myself that I could live with. Yet still, I knew only a few disabled folks, and all of them were white.

When I first started my journey of disability activism, I believed that the entire community was inclusive on principle, that issues facing us disabled people of color specifically were just as important to white disabled folks as their causes were to us. But in early 2016, when I started speaking about issues and problems specific to disabled people of color — the lack of representation in the disability community in both mass media and medical media, the fact that 50% of almost all police shootings happen to disabled black people so that if disabled lives matter we should be speaking up and in support of #BlackLivesMatter — I was met with racial slurs and demands to stop asking for my lived disabled experiences to enter the conversation. This visceral response from disabled white people made me realize that in many ways, disabled people of color are really on their own. After speaking to three of the hardest working, most visible, and brilliant disabled women of color I know, I found that I wasn’t alone in feeling this way.

Vilissa Thompson is the founder of Ramp Your Voice!, a group promoting disability self-advocacy; she has osteogenesis imperfecta, also known as brittle bone disease. Thompson is a social worker who got into disability activism because she didn’t see herself represented in the disabled community.

“I have experienced microaggressions when I have combatted disabled whites who are harmful to the community,” Thompson told me via email. “By ‘harmful,’ I mean that they have voiced racist and bigoted comments/posts that are severely problematic.” When I participated in Thompson’s #DisabilityTooWhite hashtag, which criticized the media for whitewashing disability, I got a sense of what she means. After a few of my tweets got some attention, I spent the days that followed blocking white disabled folks who called me slurs and told me I was an embarrassment to the movement and community because, like Thompson, I was bringing the issue of erasure within the community to light.

Maysoon Zayid is a writer, actress, tap dancer and advocate. Like me, she has cerebral palsy. I first became aware of her work when her TED talk, “I got 99 problems…palsy is just one,” went viral, with well over seven million views; the talk helped shape the way that I saw cerebral palsy and in turn, myself. Zayid, who dreams of acting on the soap opera General Hospital, became a disability advocate when she realized that disabled actors were being shunned in entertainment and media.

“I realize that in order to achieve my mission, I would need to change how Hollywood looked at and portrayed disability,” Zayid told me. “I am a fierce advocate for disabled actors playing disabled characters instead of non-disabled actors ‘cripping up.’ Those portrayals are harmful to the community. Visible disability, much like race, cannot be played and the portrayals come off as cartoonish and offensive. So I want to change that.” Zayid is developing a comedy series written and starring herself titled “If I Can Can,” a show that will have disabled cast and crew members. It has taken her seven years to find producers.

While Zayid works to change the face and attitude of disability in Hollywood, she’s having to do the same thing in the disability and Muslim communities. She says that she spends a lot of time explaining to the disability community that when race comes to play in disability experiences, being a disabled person of color adds another layer of discrimination. Maysoon sad it was very hard to convince people that it’s even more dangerous to be a person of color and disabled and that, as a Muslim-identifying woman she’s dealt with a lot of bigotry in the community. In fact, she was kicked out of the very first CP Facebook group she was in because she mentioned privilege.

Alice Wong, who has spinal muscular atrophy, is the founder and coordinator of the Disability Visibility Project, which promotes disability stories, history, and culture. Wong considers herself a researcher, storyteller, connector, and “digital amphibian,” which she describes as a creature that splashes between online and physical spaces. With Thompson, she is the author of #GetWokeADA26, a report that features the experiences of disabled people of color.

Wong uses the Disability Visibility Project to promote and champion the works of disabled people of color, and to share articles and essays related to disability in the hopes of starting conversations and dialogues. From what I’ve seen, it works. The project’s Facebook page provides a space for conversations that just don’t get to happen in the more visible, mostly white spaces we are otherwise expected to go to for resources. When the film Me Before You premiered, I saw discussion about its ableist nature and harmful portrayal of disability there before I saw it anywhere else. Wong has worked tirelessly to give disabled people of color a voice in the spaces that normally shut us out. She hopes that collecting and amplifying the voices of disabled POC will lead to greater awareness of what happens at the intersection of ableism and racism — including, she told me, the tokenism that can happen when someone is a noteworthy disabled person of color.

“While disability visibility is important, there are real trade-offs and risks to this visibility for marginalized folks. It’s tiring when people constantly ask me for resources or assistance within the disability or Asian American communities to represent some aspect of myself,” says Wong. “The labor and responsibility of representation is very real and a bit unfair when there are so few ‘known’ to the disability community. It’s on them to seek out and understand DPoC (disabled people of color) and to discover new voices and people rather than relying on the usual suspects like myself.“

As visible disabled women of color there are quite a few things that we hope the disability community learns about us. For Wong, it’s an understanding that the disability rights movement’s principles of interdependence, community, and vulnerability look different for disabled people of color than they do for white disabled people — but that’s okay. What isn’t okay is calling someone divisive because they acknowledge these differences. For Zayid, it’s the end of bigotry in the community. Thompson and I agree that the disability organizational leadership needs to step up and support disabled people of color. There are so many of us doing great work and often, we aren’t even invited to participate in their projects and initiatives.

Disabled organizations should be hiring disabled people of color and allowing us to spearhead projects. They should acknowledge when they mess up and give a sincere apology while taking steps to make sure it won’t happen again. The disability community has a long way to go and as we fight for inclusion of people of color in mainstream media, we must remember that the fight starts at home, in this community. If your disability activism isn’t inclusive, it isn’t activism.

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